They didn't believe me. The didn't think at the ER that my daughter was in the peril, the life threatening state she was in and they told us to "take a seat." I saw her decline, went up to the Charge Nurse and pleaded with her to give my daughter fluids. I was told to "sit down." Then, my daughter fainted, and I flipped out. I mean, full on screaming, "Help, help, someone help my daughter. She is dying! Help us!" The charge nurse put her firm hand on my shoulder and told me to "Be quiet, she is fine." A strength rose up in me and I started screaming louder, "Someone help us! My daughter is unconscious! Someone fucking help us!" The security guard rushed us over to the triage station, they took my daughter's blood pressure and it didn't register, at which point they rushed her back into an ER room, a doctor came flying in and said, "3 liters of IV fluid STAT." I watched her come back to life, I felt her essence return as I wept and held her hand. If I had ever doubted my strength and willingness to do anything and everything to help my daughter, it was erased that day.
It is so good to "see" you again Mary; I've missed you. I envision the infamous Shirley MacLaine scene at the nurses' station - It's true what they say, a mother can probably lift a car up and off her child - the depths of love....
When our son was 2 months old and had to be hospitalized for a week, a technician called me on the phone in his room to let me know that the results of a specific test out of many, were back & that one of the nurses at the station on his floor would be able to pull them up for me. (They took the tests on Friday, but you can't get any results until Monday, therefore we had been awaiting the test results going on 3 days & the technician was being so kind in letting me know the moment they came back.) My husband had gone down the hall to get us some drinks from a vending machine and on his way back, he saw me at the nurses' station from adistance, in what he called, "Shirley MacLaine" mode at the nurses' station. We can laugh about it all of these years later.
Thank you, Mary. Yes, that technician didn’t have to call me. She had been in Jimmy’s room earlier that day & knew I was anxious to get the test results back as they were looking at some serious illnesses. I really thanked her!
I had the exact same experience reading Mary's powerful narrative. The panic, the adrenaline coursing through your veins, seeing your daughter going through something and you are totally powerless and helpless in that moment.
Mary, I applaud you for what you said and did that day in the ER with your daughter. Our maternal instincts take over when our children are in danger. I have never held back when either of my children were in danger or need of help. I am sorry for what you and your daughter had to endure that way and am happy things turned out as they did.
I bet you do. You knew what was happening with your daughter, but no one in the medical profession was listening to you. HER MOTHER. The security guard was amazing. I am glad your daughter doesn’t remember it. ❤️
Emilie, I thought the same thing! And when we left hours later, he was still there, and I thanked him profusely and told my daughter what he had done for us. He told me, "I have a child too. We do what we need to do, don't we?" The kindness of strangers always staggers me.
Jun 2Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
Wonderful essay. I could easily put myself in the place of one of the "moms" and know I would have made plenty of missteps. There was a time in my younger adult years when I came to a place where I had lost both parents (one to suicide, one to cancer) and a marriage, and found myself the matriarch of our family line in my mid thirties. I had three children and was still recovering from complicated grief and emotional illness, and hadn't worked in fifteen years because of it. I had to get a job, no matter that anxiety attacks dogged my every waking moment. I met a man...a strong man....a capable man. I jumped at the chance to marry him. It turned out he was an abusive narcissist. Add shame to the list of what I felt. But I only let it go on for a couple of years and then I took my children and left him. I became an independent, strong woman for the first time in my life. That push to survive and even thrive became who I am. I've had to use it several times...through several medical emergencies, and it has taken some terrible experiences to grow that skill but it changed the way I saw myself in a good way.
This is a story you might consider writing about, as a memoir, Linda. I was married to the same man -- brilliant, strong, but an abusive narcissist. We had 3 children and when I left him lock, stock and proverbial barrel, I had never had a real job, had only just graduated from college. I left everything behind me and then was standing there in the dark, hands empty, no keys. I had to completely reinvent myself.
Someone said recently that poison can be medicine. I have been thinking about this. Poison was that horribly destructive marriage, but pulling myself out of it over the next decade was my medicine, and without the poison, I could never have accomplished what I did.
Do you think this is a way to look at all our life's tragedies, disappointments, perceived failures? Maybe we take the bad poison, turn it around and look at it for a while, and then use it as an impetus to act -- through art, through our work, through our lives, which I think also stand as cautionary tales, or else examples. Your story today is a grand example for me of strength, resilience, exercising agency and you are also noticing that in each successive painful experience, you are gaining more and more strength. You have found out who you truly are.
Nancy...so true! That's exactly how I look at it! I actually used this as well as other painful experiences in my life to guide me towards a career as a psychotherapist.I also write a"memoir" type Substack (it's next to my name here) and another one on unhealthy relationships.I love your analogy about poison!
I think I would like to say that poison can lead to medicine. You nailed it when you wrote, "Poison was that horribly destructive marraige, but pulling myself out of it over the next decade was my medicine, and without the poison, I could never have accomplished what I did." I am reinventing myself at this very present time, therefore I know what it took for you to do it. Always remember how strong you are, Nancy. We don't grow in life during the happy times, the celebrations, when things are going smoothly. We grow during times of adversity, darkness. And if we are wise, we learn from everything we have experienced and come out, yet once again, even stronger and wiser. Times of adversity can change us into people we never dreamed possible, in a positive way. This is just my humble opinion.
Yes! Susan, this is so right on. We don't grow in life, until we do the one thing we thought we couldn't do. This is how character is built. Maybe this is why, as I'm approaching my 70th year on this planet, that I can only feel really safe, really at home, with my "tribe," those people who have loved and lost and keep loving and keep losing people all around them. They are the heroes who know that to love anyone deeply is to already acknowledge we will lose each other. And yes, in the darkness, in those hours when you don't think you can stand it one more second, you find you can. And that strength builds and builds. But there are those among us who avoid pain and deflect from any argument or unpleasantness. They are the ones I find I can no longer entertain. I just don't get it. I prefer to hang out in "vulnerability land." It's where authenticity and real acceptance lie. Thank you for your humble opinion today (smile).
Your words are beautiful. Life is filled with adversities of different levels. I myself never deflect from nor ignore them. I look things head on & address them. What I have learned over the years is that trustworthy people are difficult to find. So when I know someone is, I guard our trust between us with all I can. I was burn a very trusting person which used to concern the elders in my life. Hugs.
Your elders were concerned because they didn't want you to get hurt, Susan. You are a very sensitive person and they saw this in you. But never change, Susan. Never let go of that part of you that refuses to deflect from Truth. We are living in a post-truth society right now, so it's more incumbent upon us, perhaps more now than ever before, to hold fast to the truth as we are experiencing it. To not turn away from something because it's inconvenient or painful. Trustworthy people may indeed be harder to find, but you know what? When you find one, don't let them go. My friends, the ones who are in the "inner circle," are gold to me. They are people who have been with me for decades. I would lay down my life for them. And it's such love as this, that makes life worth living for. And even fighting for.
Nancy, you have no idea how much your words mean to me. You are a very wise woman. When I was younger, I always assumed that people had the same intentions that I had when beginning a friendship or relationship, which were honesty, loyalty and having one another's backs. Even to this day, as much as I have learned over time, I have to catch myself from sharing too much too soon. I will never change in my truthfulness. It is a part of my very being. I just have to guard it more closely and share it with those whom I know i can trust. My two children (now adults) always used to say to people when they would tell them how nice they thought I was, "Yes, my mom is very nice. But don't ever lie to her. She doesn't accept it." I don't lie, Nancy, and I don't tolerate lying from others. I am an interesting combination of truth, wearing my heart on my sleeve, yet at the same time, do not cross me nor people I care about and love. Because I have absolutely no qualms about speaking my mind. People who know me joke about this; conflicts, disagreements, do not intimidate me at all. As my older sister has always said to me, most people's minds slow down in conflicts, etc. She said my mind doesn't slow down at all and I see things through to the end. Thank you for your words, your wisdom. Yes, I have learned that life is about finding our tribe and sticking to them.
I am sorry for everything you experienced at such a young age in life, Linda. And you were young. Be very proud of taking the steps which you took on your own to become the independent, strong woman that you are today. Continue to love and respect yourself. Hugs!
As my friend who is visiting and just left to sign papers on her first home purchase of her life, at 55, said, “ this is scary, but I am strong and can do hard things.”
Jun 2Liked by Suleika Jaouad, Holly Huitt, Carmen Radley
I also carry around with me in my dreams a Starbucks coffee cup and a protein bar, forever wandering the halls of the hospital, trying to stretch my legs and take in a different view. For months I stayed with my daughter, who was preparing for a bone marrow transplant, then got sepsis and then contracted Gullian Barre syndrome and was bedridden, unable to walk. Day in and day out I showed up at 8 am and sometimes didn't leave until 10 or 11 at night. Then my daughter starting asking me to stay overnight as well, and I just couldn't do it. Without a decent night's rest, I couldn't get through those long days that went on for months. The nurses were my saviors, they encouraged me to leave at night. Go home and rest, you have to rest. We will sit with her if she needs us. And they did sit with her when they could. I would leave and a sweet, young nurse would step in and hold my daughter's hand, comforting her during those hardest nights of her life. In the morning, as I walked the 3 blocks back to the hospital, I would say to myself "you will look back on these days and you must must trust that you made the best decisions based on where you were at during this most difficult time". And I find myself losing that trust and beating myself up (my daughter is no longer with us) "why didn't I stay overnight as well?" Now that I am rested and clearer in my head, I am an unfair judge of myself. I have to remind myself daily that I made prayerful, deliberate decisions based on those days. It's so hard to forgive myself that I often remain haunted, tearful, and full of regrets.
Also Liz Gilbert wrote about the difference between serving and servitude over at Letters from Love today. Might provide a bit of relief to read her wise words.
One thing that has helped me a lot with self-flagellation is something my therapist reminds me of when I berate myself for how I have handled things in the past. She reminds me that I am now looking back on things with knowledge I didn't have at the time, with more wisdom and maturity, and then expecting myself to have made past decisions based on what I could not have known then. I'm so sorry, Terri.
As someone who cared for an ill daughter for two years while she battled an impossibly difficult brain cancer, I relate to your words and moments of deep guilt and aching regrets. Existing in that most exhausting and terrifying state of caregiver is beyond challenging. It is so unfair. I, too, try my best to look back on the season with compassion for myself. But the guilt wins sometimes. So much love to you ❤️
I am so sorry to hear your daughter is no longer with you. And the inner voice is a harsh judge. I just listened to a podcast with a former navy seal and he said something I latched on to. “Remember but do not dwell”. In his particular case he was talking about having lost fellow seals, the sorrow and grief that comes with that but channeling the idea that they would want him to go on and continue living.. I took his message to heart and repeat it often to myself in momentary times of looking back on regrets etc.
The effect of saying it to myself stills the inner critic.
Why do we do this to ourselves. Forgiving myself for perceived sins/wrongs/bad behavior or deeds is something that I wonder if I will ever really reconcile. I think of the following scenario...your best friend comes to you with this statement: "It's so hard to forgive myself that I often remain haunted, tearful, and full of regrets."
And you would say what do her? You would very likely wrap your arms around her, wipe her tears away, and tell her that she is not in control of life events, that everyone is doing the very best they can do. You would respond with compassion.
Yet we never seem to be able to give the same compassion to ourselves. When my daughter died 16 years ago, I blamed myself for a million things that looking back now, I had little control over. Yet this is also a thing mothers do. Take on the whole of responsibility for our children's lives, all our lives. But it's just not sustainable. I am heartbroken -- reading your story, Terri, because it's familiar. And in this one moment, I'm just sorry you suffer from these feelings, but also want you to know you are not alone in experiencing them. I know, logically, that the only way out is to acknowledge, with heart wide open (yes, even though it's broken), an acceptance of all things before which we are helpless. To acknowledge our shared humanity. But damn. It's not easy.
No, not easy at all, Nancy. I am so sorry you lost your daughter. It is a grief that will reside with you, always. Because, as others have said, as mothers, our children are a part of our very body. They are our flesh. Our blood. This is a profound truth. A holy thing if ever there was one.
I have lost many of the people I love the most in the world. I have lived with the shame of a life I did not live, to the fullest. I have learned to forgive myself because I cannot waste what little time I have left throwing ashes on my head. I must forgive myself daily.
I understand, because I believe, that his life is transitory. My mother use to say it is school for the soul. I think she knew what she was talking about. The truth is, life is not easy. How right you are! But, oh, it is such a lovely ride. Music, flowers, the ocean, art, little children who always speak the truth, our beloved pets. Add to that friendship, sacrificial love, stories of strength and resilience ( everyone has a story!), the northern lights, good books!!! Chocolate!
In no way do I mean to minimize the pain of regret. I live with it. I only know I do not want it to have the last word. Or, as Godric says in Frederick Buechners' book of the same name,
" What's lost is nothing to what's found. And all the death there ever was, set next to life, would scarcely fill a cup".
I just turned 69 in February. And as that birthday presented myself, all I could think about was how filled with regret I have become. I'm working on this, though. I am working it out. I also lost my beloved Elsa, my gorgeous beautiful girl, my Rhodesian Ridgeback, last September 11th, and I got her after my daughter died, so losing my angel, my canine companion, who sat with me, staring into fireplaces, walking in woodland forests, traipsing through snow together. She is gone.
So many are gone.
But here's the thing.
We are lost. We are found.
We touch each other in ways we cannot fathom. We find each other in the dark, and in this strange connection, because I don't know where you are in the world, dots connect, we find each other, and in some small way, we feel so much less alone in the universe.
You know. You are a traveler. Someone who has been to many lands, known many loves, have survived much pain. I sense you are part of a tribe I keep trying to find. There are a few I have found, but it restores my faith in human nature and in life itself when someone emerges out of the darkness to grab my hand and tell me, "What's lost is nothing to what's found. And all the death there ever was, set next to life, would scarcely fill a cup."
Sending love to you tonight, from the Pacific Northwest, where we're experiencing an atmospheric river. A type of baptism, some say.
Nancy, it is so good to hear from you. For a while I couldn't find you here. Yes, I agree. This community gives us hope and, as you eluded, friendship. I felt that with you one of the first times we wrote to one another.
I am in Wisconsin, but I feel like I am in the Pacific Northwest. So much rain, which we need. But enough, already!!!
I am watching your weather as my granddaughter drove out to Washington with two friends the day after their high school graduation. Don't even get me started about my worrying heart!!!!
Oh, the heart break of losing a dog and for you, a companion that held you in place as your heart was breaking. I am so sorry. It is just so difficult to say goodbye to these faithful friends.
It would be an honor to be a part of your tribe and to set a place for you at my table. Above all else, I long, long, long for a community to belong to. To be loved and accepted and challenged and supported. It is the most basic need.
We always worry when our kids are on the road, Jacqueline. But here's too an opportunity to forge another path -- instead of worrying, try letting your granddaughter go, trust that she is learning how to care for herself, make good decisions. If she weren't on a quest, she might be denied this valuable experience. Who knows where it might lead her, because you never really know, in the end, where your future will end.
Dogs.
I am not ready. Elsa was my soul mate. There will never be another her. So perhaps in time, I'd opt...for an older dog. A dog who has been through some of the same traumas we've talked about. A dog I can identify with. One of our tribe. But not yet. I need more time to process and visualize. I always said if you can't visualize a thing, it's not likely to happen. And as I'm typing these words out, I can't see it clearly in my head.
I have been to Milwaukee once, many years ago and so loved that city, but it's the only time I was ever in Wisconsin. I know you are having rains there, too, yes? Living in a rain forest, it can for some people be too much water, but I love it. I came from central California originally, and I have had enough of heat. Give me rain! So it's okay with me. And truly, it often inspires my writing!
Reading The Heat Will Kill You First by Jeff Goodell. SIGH!!!! I do not do well in the heat and the humidity. This latitude is already feeling the effects of a heating planet. Perhaps I will migrate further north, as many animals do!!!
Yes, if being a mother has taught me anything, it is that I must let that lead on my loved ones go. Their life must follow its' own trajectory. Their lives must write themselves. But I can pray, and I do!!!
Have a wonderful week, Nancy. It has been good to connect. Thank you!
you’ve said it so well - when we are rested is when we’re most capable of tearing ourselves down for what we did in the hardest moments. I have so much respect for you for holding on to the threads of balance that you could during that time, because how precipitous a place that was.
Oh, Terry...had you not rested, you would not have been able to be the strength and also the soft place to fall for your daughter. May your heart find a peace and in that place, warmth, knowing that you were and always will be, her mother. Sending so much love.
Terri, my heart goes out to you. I am so sorry for your loss of your daughter. I cannot even fathom the pain that brings. I do wish you would learn to forgive yourself. We do the best we can, with what we are facing and dealing with in the moment. It is so easy for any of us to look pain once we are out of a crisis and judge what we chose to do back then. But we aren't being fair to ourselves when we do this...I wrote a post here today and it's below if you want to read it as I speak about how I have learned to forgive myself for my 'missteps' during times of trial. It wasn't easy, but I learned to do it. My hope for you is that you do as well. Sending love and positive energy.
Making prayerful, deliver decisions is the definition of love. You used all the tools you had to do the best for her. Thank you for sharing what I’m sure is hard to talk about. Big hugs.
Suleika, I just love all the dog adventures! I used to volunteer at an animal rescue. There was a scruffy beagle I just adored. I would take her on adventures and give her treats. It was hard not to bundle her up and take her with me so I did the next best thing and found her a forever home. I also can relate to scooping up pups along the road. I’ve even kept extra leashes and treats in my car. Lentil is a doll. Sunny too and the regal River. I had to laugh over my pre-dawn coffee too picturing you and Jon surrounded by your pack. It’s these moments that make life even richer. There’s beauty in the discord and finding harmony. I am so excited too for your art show with Maman! May the wild and beautiful adventures continue like Nancy Drew and the Case of the Wandering Wonder Dog!🐕 so much Love to you all. Woof! 🐾💛🐾💫🐾💛🐾
Thanks to the girls for protecting Scruffy Dog. Sorry but I’m a bit perturbed at the guys for insisting on leaving her/him in danger. (I also keep spare leashes in the trunk of my car.)
When I got back from tour, Mum had been in our local hospital for most of the week. The diagnosis, ‘a large tumour in the neck, exactly where brainstem meets spinal column’, have been drip fed to us over the previous week. We knew we were heading for major surgery, high risk of horrific side-effects, and that assuming she survived the 12 hour surgery.
Covid restrictions meant only one visitor in hospital and my dad had been holding this role. He is the worlds worst carer, despite a huge heart and deep love for my mother.
There were six days before surgery date and, very high on steroids, Mum was allowed home. And so I stepped out of life, and into my role is carer. Who knew for how long? A week? We prayed more of course - but the shadow over survival, and if so with what quality of life, was like a heavy storm brewing overhead with no letup, no development, no wind to move it on, just stagnant air. Waiting.
After six days of being at home, lots of laughter but full of fear, surgery day arrived. The night before both my siblings and I stayed over - the first time just the five of us had been in the house alone for probably 30 years - and it was a very early start to get Mum up, washed all over in the special bug-killing shower gel, and into the car for the drive to the hospital.
Fortunately for me, while my position was always nurse-carer, my older sister is a doctor - so the ‘official and important’ stuff was dealt with by her. Perfect teamwork.
We waited for five hours in the waiting room on the ward. Maybe the longest five hours ever? Entertainment became surreal. One of the machines bleeping played (in very mechanical bleeps) the opening five notes of a piece of Bach, and every time - mainly lying across a row of chairs - I burst into chorus with the rest of the phrase. And there was interpretive dance too - after lifting my mum onto the toilet - literally anything to distract from the reality of what was going on.
The biggest laugh, which I pray didn’t feel at her expense (though honestly don’t think she was in a state to care), was when Mum suddenly gasped. She grabbed her forehead and made excruciating pain noises. My sister and I were horrified ‘What’s wrong? What’s wrong?’ We shouted jumping up and poised to raise the alarm. ‘I can’t remember the name of the dog at the hairdressers!’ she almost sobbed.
Never fear, a quick Instagram check - after a mad guessing game - Elvis. Of course it’s Elvis! (This may have been relayed in schrade fashion - why wouldn’t you?!) Crisis averted.
And, almost immediately, the team were at the door. It was time. Nurses, Anaesthetist, the Consultant and his sidekicks, and they wheeled her away. Never to really be seen in the same way again.
Twenty-four hours later, all four of us (Dad, two siblings) were allowed to see her on HDU. In slurred speech she introduced us as ‘her two brave boys’ and ‘her two naughty girls’ To become our legacy!
Things went pear-shaped, tits-up, disasterous shit from then on.
Jumping from HDU, ICU, HDU, ward, ICU, HDU, and so it went on. There were another seven brain surgeries to follow.
For those of you shuddering at the dollar signs floating in front of your eyes, welcome to our (very fast failing) NHS. It cost not a penny.
On Mum’s 75th birthday three weeks after the initial surgery, about three operations in, she fell into a coma. In fact, she never came round after surgery number four - this one an emergency surgery in the middle of the night.
The coma lasted three or four weeks, but to be honest, maybe they were some of the easier weeks. Everyday we would pitch up. Sit by her. Hold her hand and talk to her like she was there, part of the conversation. We would give her a gentle wash, massage her hands and feet, and read to her.
Regaining consciousness didn’t really improve things. She never really returned to us. She would sit and stare blankly, no sign of recognition and no ability to do anything for herself. Dark, dark days as we would sit and play her favourite films desperately hoping for a spark of recognition. None came.
After four more surgeries with no improvement, but on raising alarm bells - by which I mean - amongst other things - breaking down in a random corridor and meeting one of Mum‘s ICU nurses we hadn’t seen for weeks, and with the care of a beautiful newly-qualified Neuro Doctor, another scan was done.
This showed a new and extensive bleed on her brain,
In the biggest neuro-department in Europe, the Consultant told us ‘Every doctor in our department has operated on your mum’.
There was no question in any of our minds that letting her die was the very best option for her.
Mum wasn’t in a rush. It took another 23 days before she eventually slipped away. 02/09/22. She had only one dose of paracetamol and was peaceful for the whole 23 days. Surrounded by family. Surrounded by love.
Oh. Was this prompted about me?! Sorry I got distracted!
My lasting memory was my abundance of cheer. I would arrive at the hospital, put on my mask (metaphorical, but of course also literal) and whatever horrific state I found her in, I would put on my best loving, caring and upbeat voice and get on with the care she needed. Not one to hide my emotions - really ever - in ‘normal’ life, I took on a whole new ability.
There wasn’t room for tears and sadness until the end. There needed to be gentle care and an ever living feeling of hope. How else was she going to find the fight to improve?
My last gift to my mum - not with standing playing her Unaccompanied Bach Violin Sonatas the night before she left us - was the promise that I made to her in those last days at home. She made me promise ‘even if she was half dead’, I would shave the whiskers on her chin.
How do you judge ‘half-dead’? - especially when holding vigil!
Early morning, private moments, just me and her. I kept my promise. She left this world bristle free.
I stayed with my Dad as he was dying. Before he lost speech , he urged me to not forget to feed the horses. As he lay dying I kept telling him the horses were fine, not to worry, I'd take care of them. He hadn't had horses since he was a child.
I love your funny memory of your mother gasping as she tried to remember the hairdresser's dogs name:) I tried my best as well to stay light and pleasant around my dying husband. I'm not so sure that was good. Most if the time I would cry my tears when he was not around.
So hard isn’t it… there can’t be a right way I guess. We do what we can in the moment, and I’m very sure your husband knew this. Much love to you - and glad you enjoyed the memory, I always look out for Elvis when I pass by! ❤️
Beautiful and lovely and here is to your mum!!! Thank you for sharing this! I took care of my mother when she was diagnosed with ovarian cancer. When she died, with humor, what she was teaching me was how to live.
If one chooses to dwell, life can be seen as full of missteps--but that is or can be Self-flagellation. From a vantage point of age which I never expected--I could have made other choices- of course-we all could- but essentially I believe most do their best in a world that is complex and can be seen as unfair as so many suffer and are suffering way beyond the self. I have immense gratitude to my teachers who led by example, especially Lee Stern-- who never hesitated to climb up 6 flights with a peanut butter sandwich--working for what was beyond the personal to the universal.
Ooof, the self-flagellation rings so true. I lived in that headspace such a long time, and in many ways, I think we’re encouraged to. Society can be judgmental, but I love your reframe and I’ve come to belief that myself. We are all doing the best we can with what we know in an often hard world.
So difficult and increasingly more so, when I was in self flagellation period my friends were Billie Holliday, Lou Reed, Bessie Smith.. not Sylvia Plath..etc I chose those that fit and I love them dearly.. part of the whole. xxoo
Ok, so this is really raw. When I went into my scheduled induction I was diagnosed with preeclampsia. My blood pressure was 201/103. I spent a week in the hospital with them trying to get my blood pressure under control. My daughter was healthy thankfully. After 24 hours of trying to have a natural birth because that was something I thought I would have control of after 3 years of fertility treatments and help with a donor egg, I looked at my wonderful doctor and said, I think we need a c-section. We were in shock and fought to go home which was right for us. Less than 2 years later, my best mom friend with her second had an extreme birth trauma and almost died, her daughter is extremely disabled. Her life has completely transformed and she has taught me so much. I love her dearly. She is powerful and a fighter and has a wonderful voice in writing and in her pain she can still comfort. I am in art school trying to find my voice ❤️🙏 🩸 🫀
Preeclampsia is dangerous. I am happy things went well for you and your child through it! One of my best friends from college had it with her 3rd child & they had to take her via ambulance for an emergency C-Section. She didn’t see her son for 3 days as they were stabilizing her after delivery. A close friend of mine who was older than me lost her daughter to a very sudden onset of preeclampsia. Her granddaughter lived and my friend and her husband were very close to their son-in-law, an essential in their situation. I am sorry for your friend’s experience. Her daughter is beyond lucky to have her as her mother. I hope your artwork helps you on your journey.
I was in the lost-me space after my daughter left for college. It took a couple years to know who I was, and that after daily morning intentions to ‘be me’. Now, facing back surgery this month, feeling physically and emotionally vulnerable, I don’t know who I am again. If I am not my quick moving doing self, do I have any worth?
I wonder sometimes if this feeling of dislocation and worthlessness is essential for our ability to renew ourselves. I hear you loud and clear. Losing my husband 2 years ago, I still wrestle with feeling insignificant, yet do experience brief moments of deep connection. I wish you great good luck with your surgery and will look for you. Keep writing.
For a year and a half I made most of my decisions based on my husband's illness. Teach, take leave, teach, oh damn, sorry kids, sorry co-teacher, this is not good news, teach and tell 6 year olds I am back to try to pull through the last 3 weeks of school, because my husband died.
How did I navigate all this, long walks, when I could go for walks, and a camera so I could keep an eye on my husband, and a little book called The Caregiver's Tao Te Ching. These two things were a big help to me. I really didn't find anyone who I could talk to, who would really understand what I was going through. I didn't really want to waste my breath with those that were asking, just to be asking. It was too sacred to share. I now am searching for me. I was the caregiver of my terminal husband, now I am the widow. All the things I was observing others do (that I secretly dreamed of doing after my husband died) take trips, eat in restaurants etc, I don't know how to do. I feel like a wanderer, not able to make decisions. It has only been a little over a month since my husband passed, so I know I need to give myself time to gather up the pieces of who I am now. I keep looking for a retreat to help me with this process, but haven't found the right one, or maybe the truth is I am just really scared.
I haven't lost my husband, but I have lost a daughter, and the one thing no one ever told me is how much grief feels like abject terror. I always thought it was sadness, but to this day, I have never felt sad. It's like that feeling in your gut when you're sleeping peacefully upstairs and you hear glass breaking downstairs, and you're alone and don't have anything to serve as a weapon. That adrenaline, that sheer primal horror, panic, terror at what you know is coming up after you. That level of fear. No one ever told me. And even after 16 years, two books on grief, and a world of sisters and friends who have rallied around me in the worst of times, I think it comes down to a quiet acknowledgement that we're not in control of anything. We have two choices in such situations: we can drown in the anguish and pain, or we can allow it to propel us into new and uncharted territory. But Julie, you're only a month out, which is to say, it's just happened to you. It will take a while to figure it out. In the meantime, remember to be gentle with yourself. When grief comes knocking on your bedroom door, don't ignore it. It will only get stronger. Just let it in, invite it to sit at your bedside, give it what it wants, feed it. After a long time, it will become a familiar face at the table.
Nancy, I am so sorry to hear that you lost a daughter. We are never the same after we lose these important people in our lives. I think that's where the fear comes from as well, that knowing we have no control over some things in life. It can all be taken away. The most understanding words someone said to me were: you must feel like you have lost a part of yourself. I thought to myself, that's it! I didn't know how I felt, but she nailed it. I was wandering and feeling homesick, but I couldn't go home because that door had closed. Your words to invite those feelings in are what I am trying to do, and to also use this experience to live an even fuller life, but first I just need to gather myself up and give myself lots of love and care. My first big decision was to resign my teaching position that was very stressful and take a much lesser paying job as a para. I just know I don't want to bypass this time of healing.
Much love to you Nancy for taking the time to offer your wisdom. Sending you well wishes on your journey!💜
Julie, thank you for sharing this very real experience of trying to reinvent yourself, give yourself permission to grieve, and to just be. I'm going to be the first person to commend you for giving up teaching. I'm way past retirement age myself, but am still teaching due to necessity. But this profession can take so much out of you, is often thankless, and requires so much mental and emotional energy. No doubt you are already feeling better just transitioning to a paraprofessional status.
But you said something that is so true -- it's as though we've lost some vital part of ourselves that we also know we can never retrieve, despite our best efforts or belief in magical thinking. You do well to be gentle with yourself, to give yourself lots of love, care, to be patient with yourself, to withhold any judgement (and to not buy into any judgement others might try to impart to you). And maybe it helps to know that as horrible as it is, you truly are not alone in this journey. Many others join you (me included), and there has always been some comfort I've gotten from knowing that as bad as it gets sometimes, I'm not the only person in the world who has lost anyone they love. Thank you, Julie!
I’ve not been where you are, but I have a friend who is just past the one year mark. I think scared is exactly it – – her healing is complicated by the chronically ill son, which means her caregiving is not over. But I think the fear is real. I read something beautiful in Susan McCain‘s book bittersweet last night, first said by Nora McInerney (whose book Terrible, Thanks For Asking may help you laugh through your tears, especially over a glass of wine as you take yourself out to that dinner you deserve), your husband will always be with you, an indelible presence, as you grow and heal, as you learn to live in this world again. I hope that gives you a little strength to get out and do something special for yourself today. May his memory be for a blessing. Big hugs.
Thank you so much Ilene, for taking the time to write this caring message. Oh my, I feel for your friend having to do another round of caregiving. I am sure you offer much support to her. Thank goodness we have so many angels on earth to help lift us up. Much love and well wishes to you and your friend!💜
Dear Julie, Thank you for sharing your experience and for the reference to "The Caregiver's Tao Te Ching" I just downloaded it on Kindle and there is nothing else that I know of like it.
I wish I could have been there for you to talk to. You are in what I call the “daze stage.” The shock and immediate duties are over, the food gifts are eaten, the flowers have faded. Now what? When you are up to it, I found this book to be helpful.
We live in what many call a grief illiterate society. People aren’t comfortable with, or don’t like, seeing or feeling other’s grief. Or they hide their own. Both are extremely unhealthy. Open up to those whom you trust. Your words, “I didn’t really want to waste my breath with those that were asking, just to be asking” is very wise on your part. There is no time limit on grief nor “correct “ way to grieve. This is your journey. Grieving is a process. Take it one day at a time as you learn who you becoming in this part of your life. ❤️
Julie - “It was too sacred to share.” I understand that. Maybe sitting with yourself and writing your journey through this whole experience is your start in the process of absorbing this magnificent grief and finding your pathway forward. You were dealing with so much that I would venture to say you were in survival mode, and maybe still are. You were a caregiver, you were taking care of your school children, etc. You were in a whirlwind and now that you aren’t swallowed up by so much of the day to day action, maybe now you can start to find your footing from so much upheaval. Maybe writing how you feel down will help you share it with others because your experience is worth speaking about. I’m already inspired by you, and you’ll find your way around all the rawness that has happened. Give yourself grace, gift yourself joy even if it’s in the smallest way like witnessing a sunset/sunrise, a bird singing, etc…Grasps the firsts and rebirths you will go through. Your life is as much a gift as was your husband’s. Lean into what comforts you. Wishing you a wealth of healing.💗
I set my career to the side during the pandemic while I was caring for my elderly aunt. I was juggling everything, from home health care to bills, all the meals, keeping her entertained, along with the little work I could do. My aunt eventually died at age 94 in 2022, at home, in her own bed, with hospice at the very end. I still beat myself up for the times I got impatient and frustrated. I wanted her to feel safe and cared for in her last years. While I know she was, I wasn’t perfect in the way I dealt with things, and it weighs on me.
As I'm typing this to you, Micheline, my husband is down south in San Jose, California, caring for his 95 year old mother, and her sister, who is 85. People like you are like angels on this earth. I know many people who are kind, compassionate even, but who would make ineffective caregivers because it's just not within their capacity to do those things necessary -- much of which is messy and thankless -- they just can't do it. You are different. A niece who would "set her career aside," -- no small decision, with potentially long range ramifications -- juggling health care decisions, paying bills, dealing with meal prep, keeping her aunt's spirits up, is nothing short of heroic. So let me be the voice of redemption here for a moment. You are, for me today, more inspirational than anyone I've known recently. You are the epitome of what is right with this country. You are an angel, someone who cares deeply, loves deeply. What should weigh on you, my friend, is the knowledge that you rose to an occasion, made your dear aunt's last days bearable. She knew she was loved. How could she not have known that? And what more peaceful, magnificent way to leave this earth, than to know you have been truly loved. Sit with that idea for a while, and especially in every moment in which you believe you were "not perfect."
Oh, Nancy, that is so kind of you. Sending my love to your husband and his elders, too. I was the last person my aunt saw in the night when she died. I had a video monitor and I could see that she had slid off her pillow. I went in to quietly shift her back. She looked up at me, and said, “Oh, Mick” (my nickname is Micki, for those who don’t know). I took her hand and it was ice cold. I rearranged her and covered her back up. Sometime, a few hours later, she was gone. I’m glad she knew I was there with her before she went to join the ancestors.
So she was conscious until the very end, thanking you, acknowledging your presence. No moment in our lives is as sacred, and to share it, to bear witness and provide strength and love as that person is crossing over the River Styx, is a great privilege and honor. I truly hope in the days, weeks, years ahead, that you remember that, take it with you, and don't let anything else weigh upon you.
Do not beat yourself up. You unselfishly set your career aside to care for your elderly aunt during the pandemic. If that isn’t love, what is? None of us are constantly patient under difficult circumstances. We do the best we can at the time. Be kind and gentle to yourself. ❤️
I am a mother of two beautiful adult daughters as well as a retired critical care RN and still teaching yoga for 20 years. I share that because I’m a caretaker deep in the marrow of my bones. I think all women, mothers or not, have an innate capability of being caretakers. My life blew apart about 8 years ago when I found out that my partner/fiancé was having an ongoing relationship with a woman 36 years his junior, I had 2 major surgeries within 5 months of each other, and my oldest daughter had her first psychotic breakdown. I left my fiancé, found another place to live, and had my daughter move in with me. Her partner of 13 years couldn’t deal with my daughters mental illness and I couldn’t blame him. The first six years of my daughter’s illness included multiple calls to 911 ( now 988), countless ER visits, multiple psychiatric hospitalizations, and multiple trials of finding the right medications to treat the mental illness she will always have to live with. She lost her home, her career, her 2 cats, and her partner. She’s been a bit more stable but like Suleika’s memoir, we live “ between two kingdoms”. My heart breaks for her at times and I’ve witnessed her courage, her wisdom, and her will to continue on. I discovered painting with acrylics during this time and who knew? Painting has been my succor, my lifeline at times. I’ve learned one of life’s deepest lessons that to be of service, no matter what, would break my heart wide open to a deeper compassion, an ability to listen more with my heart not my head, and to never judge anyone’s grief less than my own.
Suleika, your memoir and your commitment to art as an act of survival has been the truest inspiration for me, thank you, thank you, thank you.
" Painting has been my succor, my lifeline at times. I’ve learned one of life’s deepest lessons that to be of service, no matter what, would break my heart wide open to a deeper compassion, an ability to listen more with my heart not my head, and to never judge anyone’s grief less than my own." So beautiful, so true. ❤️
You are a strong woman, Lynn-Marie. This is beautifully written and expresses so much in different areas. Have you ever watched Steel Magnolias? I think I know every line by memory in it at this point. There is a heart wrenching scene in which it is the women who are the ones facing the crisis head on, as the men feel compelled to leave. We are wired differently. Like you, I never judge anyone’s grief nor trauma, as less than my own. May you continue to find strength and healing in your painting. ❤️
I never tire of it! I didn’t want to go into detail about that particular scene, not knowing if you had seen it or not. One of my nieces & I bounce lines off of each other from it when the mood strikes us. 😉
I resonate with the lost dog and keys adventure. It says something about the self and community of friends that takes responsibility for said return. Frenchtown is a beautiful community. I bicycled there weekly from Lambertville during COVID. I was up visiting my mom’s grave two weeks ago at Ferncliff in Hartsdale, I lost my keys. I retraced my steps all the way back to Malcolm X and Betty Shabazz’s grave. No keys. I finally climbed on the hood of my car to look in the windshield. Nil. As I swung my body around to get off the hood, the doors unlocked. The keys were hidden between my pants and body. What’s lost, shall be found… in life and Life.
This prompt brought tears mostly because I am also a mom who left my name at the door. And even 16 years after the worst of the crises have become memo, I find I am still a mom who left my name at the door. When I write my grief and try to sort through what it was like to be that hurt soul at the bedside who is only known as mom – – as generically as every mom in the NICU— my otherwise charming 19-year-old daughter asks me to erase that part of myself.
I coped by seeing her through my camera lens – – 17 rolls of real film in 49 days of her tenuous hospital stay, days she doesn’t remember because Athena was a new born. Days I spent crying in the maternal lactation room and nights when I could not sleep for fear she would not be there when I returned in the morning. I posted updates and pictures to a blog that I’ve taken down to help her heal.
Alexa, I see you because I am you. (Just asked Amazon to play your music and it starters with Red River Run!)
Suleika, you’ve done it again—made me laugh and cry at once.
I have answered this prompt over and over again in the past 19 years. Most recently in an essay that I am proud to have had published last week and I hope some of you might read.
The essay was nothing short of gorgeous, Ilene, and thank you for sending the link. Absolutely gorgeous.
As an aside, I copied that recipe, and since I'm growing thousands of tomatoes this summer, it's first on my list for a fall comfort food. Blessings to you, dear lady, and your precious Charlotte.
Thank you, Nancy! I have a better tomato soup for you :-) (Clarke’s is good, but a bit fussy). It’s something like this https://www.gimmesomeoven.com/roasted-tomato-soup/ when I find the right link, I’ll send it!!
When my husband, Frank, was dying of brain cancer, I knew I was hanging on by a thread sometimes. I had to keep working, for the insurance. I had to take time off, to take him to medical appointments, when he could no longer drive. When he became bedridden, I had to depend on my Mom and sisters to stop by, to fix him lunch, if I could not get away from work. His daughter, my stepdaughter, volunteered to take a turn doing it often. But I soon discovered, that was not a blessing after all. My house would be a disaster when I got home and my husband had given her his ATM card and password to get money for their lunch and anything else she might need. She took advantage of that and kept the card, using it often. He could not remember giving her the card or getting it back. When I finally got a minute to check the bank account, I was shocked. I cancelled the card and got the bank to issue a new one for me only. During all of this, I knew I needed to find some way of finding some serenity. Whenever I could, mostly when at night, I played music, listening with headphones. Many of the songs were upbeat, fast songs that I could dance around the room too. My dear friend Terri, made several CD’s, titled them “girlfriends” and all female singers. It was my salvation!! It’s been 20 years now, as he passed away in November 2004.
I have since remarried but I will be forever grateful for the music and my family and friends who got me through it.
First off I was bubbling over with giggles reading about Suleika’s 2-hour detour. That for sure could be a children’s book. So much adventure in 2 hours. I could hear the dialogue and see your faces so vividly as if this was a small play acting out in my head. I could see it all so clearly. Jon, “Why do you have that dog on a leash?” 😂 The dog I envisioned could look nothing like the dog you led back home, but he was scruffy and happy all the same. What a delightful and lovely adventure. So colorful and vibrant. Dogs and icecream. 🐶🍦
Then when I read Alexa’s submission, about half way through I had to put my phone down as the tears flooded my eyes. I am her, she was me…I’ve been that mom and I am still her.
My daughter had cancer and I dove down to the deepest depths to care for her. I shed my skin, myself, waved goodbye to all my hopes and aspirations, and dove straight down to the bottom. I immersed myself in her care. Somehow I managed to learn to breathe in that water without coming up for air. The weight of it, slogging through it when it became murky and hard to find my way.
It’s been a little over 5 years since her diagnosis and she is thriving, but I’m not. She is out of that water, dried off, restored, renewed, and in a new water less murky, it’s vibrant, crystal blue, filled with life. I find myself still in the murk, tangled in the aftermath, tangled in the neglect for myself. Sometimes I am able to pull myself up out of that murky water, but I’m still dripping in it, smelling like it, tasting it. Unable to find a towel to dry off, unable to wipe off the stains and residue from being in such murk for so long.
The residue is the guilt and shame for not being able to bounce back fully. Lungs full of water and weight still choking on the residue.
Sometimes I’m able to join my daughter in her crystal blue surroundings. We splash and play, and I’m always reminded of how lucky we are. Even that joy is sometimes backed by survivor’s guilt.
I wish the transition from then and now was smoother. Even after writing this down I feel
guilt and shame that I struggled with this experience. I wasn’t the one sick, but it made me sick. It made me stop caring for myself, which I think I’d do all over again in order to soldier my daughter through back to the life she deserves. I would hope I’m wiser and better from this experience even though it feels like I lost so much of myself in it. Part of me feels those pieces of me that feel lost aren’t really lost they’re just drastically changed, they’re foreign in feeling, and I’ll come into myself again. Fully realized, fully alive.
I'm awed by how beautifully you've been able to articulate your experience, Stephanie. Keep doing that, keep writing. You will find your way through. ❤️
Thank you Suleika for that encouragement. It has been beautiful to find so many treasured souls this week who have been through similar experiences. TIJ is a place of inspiration and healing. I will keep writing my way through. 💗
Stephanie, I cried at Alex’s prompt for the same reason and your response has me in that place too. I am you and you are me in 19 years after my experience,, YOU have finally found the words to articulate how I feel.
I too found myself in your beautiful essay you linked. Specifically this…
“And in doing that, I’d hidden how fragile I’d become. I’d shattered myself to protect my baby, though I didn’t realize it at the time. I was so exhausted that I didn’t quite see how alone I was.”
When I read that I had to put my phone down and let how much that resonated, sink in. I felt for you, and for so many other voices in this community and beyond who have lived this experience. We are bonded in our experiences, and there is a comfort in knowing we are really not alone.
Sending love to you as you gather up and integrate who you are now. You will have so much more wisdom, understanding and compassion for others after being broken open like this. 💜
“I wasn’t the one sick, but it made me sick. It made me stop caring for myself, which I think I’d do all over again in order to soldier my daughter through back to the life she deserves.” This. Yes.
Stephanie-such a beautifully written articulation of mom feelings; I cannot express with such eloquence how much I feel the same. Four years ago, my son had a complete spinal cord injury. It was during the pandemic, and I wasn't allowed to be there. The past 4 years has involved so much fighting for him. It is so worth it, because he is doing so well. But the battle will go on forever. Even so far out from the orignal injury, I experienced a meltdown just last week -over a denial of an ongoing procedure that has helped him to live his best life. We (mostly me) will fight for it, of course. No one wants to hear about these grievances after 4 years. I feel so solitary and sometimes alone in the fight. But at the same time I know how lucky I am that he is here to fight for and I am indescribably grateful for that gift--he is in water that is filled with life, if not crystal blue.
Yes! I’ve been there too so many times! I find when my brain starts to spin its wheels while writing, it’s time for for me to leave my desk and go for a long walk outside.
They didn't believe me. The didn't think at the ER that my daughter was in the peril, the life threatening state she was in and they told us to "take a seat." I saw her decline, went up to the Charge Nurse and pleaded with her to give my daughter fluids. I was told to "sit down." Then, my daughter fainted, and I flipped out. I mean, full on screaming, "Help, help, someone help my daughter. She is dying! Help us!" The charge nurse put her firm hand on my shoulder and told me to "Be quiet, she is fine." A strength rose up in me and I started screaming louder, "Someone help us! My daughter is unconscious! Someone fucking help us!" The security guard rushed us over to the triage station, they took my daughter's blood pressure and it didn't register, at which point they rushed her back into an ER room, a doctor came flying in and said, "3 liters of IV fluid STAT." I watched her come back to life, I felt her essence return as I wept and held her hand. If I had ever doubted my strength and willingness to do anything and everything to help my daughter, it was erased that day.
It is so good to "see" you again Mary; I've missed you. I envision the infamous Shirley MacLaine scene at the nurses' station - It's true what they say, a mother can probably lift a car up and off her child - the depths of love....
When our son was 2 months old and had to be hospitalized for a week, a technician called me on the phone in his room to let me know that the results of a specific test out of many, were back & that one of the nurses at the station on his floor would be able to pull them up for me. (They took the tests on Friday, but you can't get any results until Monday, therefore we had been awaiting the test results going on 3 days & the technician was being so kind in letting me know the moment they came back.) My husband had gone down the hall to get us some drinks from a vending machine and on his way back, he saw me at the nurses' station from adistance, in what he called, "Shirley MacLaine" mode at the nurses' station. We can laugh about it all of these years later.
"Shirley MacLaine mode" for sure!!! I am so thankful for you, for that technician. When people are humane, it is so beautiful.
Thank you, Mary. Yes, that technician didn’t have to call me. She had been in Jimmy’s room earlier that day & knew I was anxious to get the test results back as they were looking at some serious illnesses. I really thanked her!
And that I had to wait over the weekend. We mom’s, right?
Meant to write a distance, not adistance. I wish there was an editing function on here. 😉
actually there is an editing function. the 3 dots to the right of the entry, after it's submitted :-)
Thanks Judi . I’ve often needed to edit and did not know that 3 dot solution .
I had the exact same experience reading Mary's powerful narrative. The panic, the adrenaline coursing through your veins, seeing your daughter going through something and you are totally powerless and helpless in that moment.
Nancy, we have shared in this horror. Thank you for your, well, honoring us all with terrifying truth.
Nocapes, yes! That scene! "Give my daughter the pain medication!!!" You are beyond kind to "see" me, and I thank you.
Wow. I can imagine the fear and panic in that situation. So thankful you rose up and fought for her!
Linda, even as I was typing it this morning, my heart began to race. I thank you so much for these words, "...rose up and fought for her."
Because that is precisely what a mother bear does – – rise up and roar
Sometimes we need to keep screaming when no one is listening!
Evelyn, yes!!
ooof. I'm so sorry this happened to you and your daughter. I had a friend call 911 from the ER wait room. I've never forgotten that hack.
Sarah, wow, never thought to do that!
♥️♥️♥️
Moms know best.
Dear God. I am so sorry you had to experience that
Mary, I applaud you for what you said and did that day in the ER with your daughter. Our maternal instincts take over when our children are in danger. I have never held back when either of my children were in danger or need of help. I am sorry for what you and your daughter had to endure that way and am happy things turned out as they did.
Susan, thank you. I still have internal trauma from that...my daughter does not remember. I am so thankful for that, for her.
I bet you do. You knew what was happening with your daughter, but no one in the medical profession was listening to you. HER MOTHER. The security guard was amazing. I am glad your daughter doesn’t remember it. ❤️
Thank God the security guard heard you while the nurse chose not to.
Emilie, I thought the same thing! And when we left hours later, he was still there, and I thanked him profusely and told my daughter what he had done for us. He told me, "I have a child too. We do what we need to do, don't we?" The kindness of strangers always staggers me.
You were a mama tiger fighting for her cub- fierce mama energy, Mary❤️
Thank you, JB9. Oh, that Mama energy is some powerful stuff.
Wonderful essay. I could easily put myself in the place of one of the "moms" and know I would have made plenty of missteps. There was a time in my younger adult years when I came to a place where I had lost both parents (one to suicide, one to cancer) and a marriage, and found myself the matriarch of our family line in my mid thirties. I had three children and was still recovering from complicated grief and emotional illness, and hadn't worked in fifteen years because of it. I had to get a job, no matter that anxiety attacks dogged my every waking moment. I met a man...a strong man....a capable man. I jumped at the chance to marry him. It turned out he was an abusive narcissist. Add shame to the list of what I felt. But I only let it go on for a couple of years and then I took my children and left him. I became an independent, strong woman for the first time in my life. That push to survive and even thrive became who I am. I've had to use it several times...through several medical emergencies, and it has taken some terrible experiences to grow that skill but it changed the way I saw myself in a good way.
This is a story you might consider writing about, as a memoir, Linda. I was married to the same man -- brilliant, strong, but an abusive narcissist. We had 3 children and when I left him lock, stock and proverbial barrel, I had never had a real job, had only just graduated from college. I left everything behind me and then was standing there in the dark, hands empty, no keys. I had to completely reinvent myself.
Someone said recently that poison can be medicine. I have been thinking about this. Poison was that horribly destructive marriage, but pulling myself out of it over the next decade was my medicine, and without the poison, I could never have accomplished what I did.
Do you think this is a way to look at all our life's tragedies, disappointments, perceived failures? Maybe we take the bad poison, turn it around and look at it for a while, and then use it as an impetus to act -- through art, through our work, through our lives, which I think also stand as cautionary tales, or else examples. Your story today is a grand example for me of strength, resilience, exercising agency and you are also noticing that in each successive painful experience, you are gaining more and more strength. You have found out who you truly are.
Nancy...so true! That's exactly how I look at it! I actually used this as well as other painful experiences in my life to guide me towards a career as a psychotherapist.I also write a"memoir" type Substack (it's next to my name here) and another one on unhealthy relationships.I love your analogy about poison!
I think I would like to say that poison can lead to medicine. You nailed it when you wrote, "Poison was that horribly destructive marraige, but pulling myself out of it over the next decade was my medicine, and without the poison, I could never have accomplished what I did." I am reinventing myself at this very present time, therefore I know what it took for you to do it. Always remember how strong you are, Nancy. We don't grow in life during the happy times, the celebrations, when things are going smoothly. We grow during times of adversity, darkness. And if we are wise, we learn from everything we have experienced and come out, yet once again, even stronger and wiser. Times of adversity can change us into people we never dreamed possible, in a positive way. This is just my humble opinion.
Yes! Susan, this is so right on. We don't grow in life, until we do the one thing we thought we couldn't do. This is how character is built. Maybe this is why, as I'm approaching my 70th year on this planet, that I can only feel really safe, really at home, with my "tribe," those people who have loved and lost and keep loving and keep losing people all around them. They are the heroes who know that to love anyone deeply is to already acknowledge we will lose each other. And yes, in the darkness, in those hours when you don't think you can stand it one more second, you find you can. And that strength builds and builds. But there are those among us who avoid pain and deflect from any argument or unpleasantness. They are the ones I find I can no longer entertain. I just don't get it. I prefer to hang out in "vulnerability land." It's where authenticity and real acceptance lie. Thank you for your humble opinion today (smile).
Your words are beautiful. Life is filled with adversities of different levels. I myself never deflect from nor ignore them. I look things head on & address them. What I have learned over the years is that trustworthy people are difficult to find. So when I know someone is, I guard our trust between us with all I can. I was burn a very trusting person which used to concern the elders in my life. Hugs.
Your elders were concerned because they didn't want you to get hurt, Susan. You are a very sensitive person and they saw this in you. But never change, Susan. Never let go of that part of you that refuses to deflect from Truth. We are living in a post-truth society right now, so it's more incumbent upon us, perhaps more now than ever before, to hold fast to the truth as we are experiencing it. To not turn away from something because it's inconvenient or painful. Trustworthy people may indeed be harder to find, but you know what? When you find one, don't let them go. My friends, the ones who are in the "inner circle," are gold to me. They are people who have been with me for decades. I would lay down my life for them. And it's such love as this, that makes life worth living for. And even fighting for.
Nancy, you have no idea how much your words mean to me. You are a very wise woman. When I was younger, I always assumed that people had the same intentions that I had when beginning a friendship or relationship, which were honesty, loyalty and having one another's backs. Even to this day, as much as I have learned over time, I have to catch myself from sharing too much too soon. I will never change in my truthfulness. It is a part of my very being. I just have to guard it more closely and share it with those whom I know i can trust. My two children (now adults) always used to say to people when they would tell them how nice they thought I was, "Yes, my mom is very nice. But don't ever lie to her. She doesn't accept it." I don't lie, Nancy, and I don't tolerate lying from others. I am an interesting combination of truth, wearing my heart on my sleeve, yet at the same time, do not cross me nor people I care about and love. Because I have absolutely no qualms about speaking my mind. People who know me joke about this; conflicts, disagreements, do not intimidate me at all. As my older sister has always said to me, most people's minds slow down in conflicts, etc. She said my mind doesn't slow down at all and I see things through to the end. Thank you for your words, your wisdom. Yes, I have learned that life is about finding our tribe and sticking to them.
Born, not burn. I wish there was editing was possible on here. 😉
No worries! This happens to me all the time. :)
What an amazing concept. I’m gonna have to think about it. And I think you are all so brave to take those steps and reinvent yourselves.
❤️❤️❤️
Linda!!!!!! Kicking ass and taking names! Your piece here, is an inspiration for me. Thank you.
Thanks, Mary!
I am sorry for everything you experienced at such a young age in life, Linda. And you were young. Be very proud of taking the steps which you took on your own to become the independent, strong woman that you are today. Continue to love and respect yourself. Hugs!
As my friend who is visiting and just left to sign papers on her first home purchase of her life, at 55, said, “ this is scary, but I am strong and can do hard things.”
Yes...recently read a book, "Feel the Fear and Do It Anyway." Great book and philosophy!
I also carry around with me in my dreams a Starbucks coffee cup and a protein bar, forever wandering the halls of the hospital, trying to stretch my legs and take in a different view. For months I stayed with my daughter, who was preparing for a bone marrow transplant, then got sepsis and then contracted Gullian Barre syndrome and was bedridden, unable to walk. Day in and day out I showed up at 8 am and sometimes didn't leave until 10 or 11 at night. Then my daughter starting asking me to stay overnight as well, and I just couldn't do it. Without a decent night's rest, I couldn't get through those long days that went on for months. The nurses were my saviors, they encouraged me to leave at night. Go home and rest, you have to rest. We will sit with her if she needs us. And they did sit with her when they could. I would leave and a sweet, young nurse would step in and hold my daughter's hand, comforting her during those hardest nights of her life. In the morning, as I walked the 3 blocks back to the hospital, I would say to myself "you will look back on these days and you must must trust that you made the best decisions based on where you were at during this most difficult time". And I find myself losing that trust and beating myself up (my daughter is no longer with us) "why didn't I stay overnight as well?" Now that I am rested and clearer in my head, I am an unfair judge of myself. I have to remind myself daily that I made prayerful, deliberate decisions based on those days. It's so hard to forgive myself that I often remain haunted, tearful, and full of regrets.
Sending so much love and prayers for peace, Terri. You deserve it ❤️❤️❤️
Also Liz Gilbert wrote about the difference between serving and servitude over at Letters from Love today. Might provide a bit of relief to read her wise words.
One thing that has helped me a lot with self-flagellation is something my therapist reminds me of when I berate myself for how I have handled things in the past. She reminds me that I am now looking back on things with knowledge I didn't have at the time, with more wisdom and maturity, and then expecting myself to have made past decisions based on what I could not have known then. I'm so sorry, Terri.
Thank you for that, Linda. I needed to hear your words of comfort.
It's not easy to integrate that into something we can really hang on to. It is comforting, but it takes work for those like us. Blessings!
As someone who cared for an ill daughter for two years while she battled an impossibly difficult brain cancer, I relate to your words and moments of deep guilt and aching regrets. Existing in that most exhausting and terrifying state of caregiver is beyond challenging. It is so unfair. I, too, try my best to look back on the season with compassion for myself. But the guilt wins sometimes. So much love to you ❤️
I am so sorry to hear your daughter is no longer with you. And the inner voice is a harsh judge. I just listened to a podcast with a former navy seal and he said something I latched on to. “Remember but do not dwell”. In his particular case he was talking about having lost fellow seals, the sorrow and grief that comes with that but channeling the idea that they would want him to go on and continue living.. I took his message to heart and repeat it often to myself in momentary times of looking back on regrets etc.
The effect of saying it to myself stills the inner critic.
Remember but do not Dwell . Thank you Evan . That’s life changing
Oh Terri. So many of us beat ourselves up. Please give yourself some grace and love. You were and are a wonderful mother.❤️
Sending you lots of love, sleeping at night allowed you to care with so much love in the day ❤️❤️❤️
Why do we do this to ourselves. Forgiving myself for perceived sins/wrongs/bad behavior or deeds is something that I wonder if I will ever really reconcile. I think of the following scenario...your best friend comes to you with this statement: "It's so hard to forgive myself that I often remain haunted, tearful, and full of regrets."
And you would say what do her? You would very likely wrap your arms around her, wipe her tears away, and tell her that she is not in control of life events, that everyone is doing the very best they can do. You would respond with compassion.
Yet we never seem to be able to give the same compassion to ourselves. When my daughter died 16 years ago, I blamed myself for a million things that looking back now, I had little control over. Yet this is also a thing mothers do. Take on the whole of responsibility for our children's lives, all our lives. But it's just not sustainable. I am heartbroken -- reading your story, Terri, because it's familiar. And in this one moment, I'm just sorry you suffer from these feelings, but also want you to know you are not alone in experiencing them. I know, logically, that the only way out is to acknowledge, with heart wide open (yes, even though it's broken), an acceptance of all things before which we are helpless. To acknowledge our shared humanity. But damn. It's not easy.
No, not easy at all, Nancy. I am so sorry you lost your daughter. It is a grief that will reside with you, always. Because, as others have said, as mothers, our children are a part of our very body. They are our flesh. Our blood. This is a profound truth. A holy thing if ever there was one.
I have lost many of the people I love the most in the world. I have lived with the shame of a life I did not live, to the fullest. I have learned to forgive myself because I cannot waste what little time I have left throwing ashes on my head. I must forgive myself daily.
I understand, because I believe, that his life is transitory. My mother use to say it is school for the soul. I think she knew what she was talking about. The truth is, life is not easy. How right you are! But, oh, it is such a lovely ride. Music, flowers, the ocean, art, little children who always speak the truth, our beloved pets. Add to that friendship, sacrificial love, stories of strength and resilience ( everyone has a story!), the northern lights, good books!!! Chocolate!
In no way do I mean to minimize the pain of regret. I live with it. I only know I do not want it to have the last word. Or, as Godric says in Frederick Buechners' book of the same name,
" What's lost is nothing to what's found. And all the death there ever was, set next to life, would scarcely fill a cup".
I send you love.
Dear Jacqueline,
I just turned 69 in February. And as that birthday presented myself, all I could think about was how filled with regret I have become. I'm working on this, though. I am working it out. I also lost my beloved Elsa, my gorgeous beautiful girl, my Rhodesian Ridgeback, last September 11th, and I got her after my daughter died, so losing my angel, my canine companion, who sat with me, staring into fireplaces, walking in woodland forests, traipsing through snow together. She is gone.
So many are gone.
But here's the thing.
We are lost. We are found.
We touch each other in ways we cannot fathom. We find each other in the dark, and in this strange connection, because I don't know where you are in the world, dots connect, we find each other, and in some small way, we feel so much less alone in the universe.
You know. You are a traveler. Someone who has been to many lands, known many loves, have survived much pain. I sense you are part of a tribe I keep trying to find. There are a few I have found, but it restores my faith in human nature and in life itself when someone emerges out of the darkness to grab my hand and tell me, "What's lost is nothing to what's found. And all the death there ever was, set next to life, would scarcely fill a cup."
Sending love to you tonight, from the Pacific Northwest, where we're experiencing an atmospheric river. A type of baptism, some say.
Nancy, it is so good to hear from you. For a while I couldn't find you here. Yes, I agree. This community gives us hope and, as you eluded, friendship. I felt that with you one of the first times we wrote to one another.
I am in Wisconsin, but I feel like I am in the Pacific Northwest. So much rain, which we need. But enough, already!!!
I am watching your weather as my granddaughter drove out to Washington with two friends the day after their high school graduation. Don't even get me started about my worrying heart!!!!
Oh, the heart break of losing a dog and for you, a companion that held you in place as your heart was breaking. I am so sorry. It is just so difficult to say goodbye to these faithful friends.
It would be an honor to be a part of your tribe and to set a place for you at my table. Above all else, I long, long, long for a community to belong to. To be loved and accepted and challenged and supported. It is the most basic need.
Will you get another dog?
Love,
Jacqueline
We always worry when our kids are on the road, Jacqueline. But here's too an opportunity to forge another path -- instead of worrying, try letting your granddaughter go, trust that she is learning how to care for herself, make good decisions. If she weren't on a quest, she might be denied this valuable experience. Who knows where it might lead her, because you never really know, in the end, where your future will end.
Dogs.
I am not ready. Elsa was my soul mate. There will never be another her. So perhaps in time, I'd opt...for an older dog. A dog who has been through some of the same traumas we've talked about. A dog I can identify with. One of our tribe. But not yet. I need more time to process and visualize. I always said if you can't visualize a thing, it's not likely to happen. And as I'm typing these words out, I can't see it clearly in my head.
I have been to Milwaukee once, many years ago and so loved that city, but it's the only time I was ever in Wisconsin. I know you are having rains there, too, yes? Living in a rain forest, it can for some people be too much water, but I love it. I came from central California originally, and I have had enough of heat. Give me rain! So it's okay with me. And truly, it often inspires my writing!
Rain is never just rain. :)
Reading The Heat Will Kill You First by Jeff Goodell. SIGH!!!! I do not do well in the heat and the humidity. This latitude is already feeling the effects of a heating planet. Perhaps I will migrate further north, as many animals do!!!
Yes, if being a mother has taught me anything, it is that I must let that lead on my loved ones go. Their life must follow its' own trajectory. Their lives must write themselves. But I can pray, and I do!!!
Have a wonderful week, Nancy. It has been good to connect. Thank you!
you’ve said it so well - when we are rested is when we’re most capable of tearing ourselves down for what we did in the hardest moments. I have so much respect for you for holding on to the threads of balance that you could during that time, because how precipitous a place that was.
I often say to myself these days that I'm doing the best that I can...🙏
Oh, Terry...had you not rested, you would not have been able to be the strength and also the soft place to fall for your daughter. May your heart find a peace and in that place, warmth, knowing that you were and always will be, her mother. Sending so much love.
Terri, my heart goes out to you. I am so sorry for your loss of your daughter. I cannot even fathom the pain that brings. I do wish you would learn to forgive yourself. We do the best we can, with what we are facing and dealing with in the moment. It is so easy for any of us to look pain once we are out of a crisis and judge what we chose to do back then. But we aren't being fair to ourselves when we do this...I wrote a post here today and it's below if you want to read it as I speak about how I have learned to forgive myself for my 'missteps' during times of trial. It wasn't easy, but I learned to do it. My hope for you is that you do as well. Sending love and positive energy.
Sending you love and hugs.
I’m sending you love, Terri, as you continue to walk with your grief. ❤️
Making prayerful, deliver decisions is the definition of love. You used all the tools you had to do the best for her. Thank you for sharing what I’m sure is hard to talk about. Big hugs.
Suleika, I just love all the dog adventures! I used to volunteer at an animal rescue. There was a scruffy beagle I just adored. I would take her on adventures and give her treats. It was hard not to bundle her up and take her with me so I did the next best thing and found her a forever home. I also can relate to scooping up pups along the road. I’ve even kept extra leashes and treats in my car. Lentil is a doll. Sunny too and the regal River. I had to laugh over my pre-dawn coffee too picturing you and Jon surrounded by your pack. It’s these moments that make life even richer. There’s beauty in the discord and finding harmony. I am so excited too for your art show with Maman! May the wild and beautiful adventures continue like Nancy Drew and the Case of the Wandering Wonder Dog!🐕 so much Love to you all. Woof! 🐾💛🐾💫🐾💛🐾
I love, love, love that you keep extra leashes and treats in your car.
Slip leads are best! Thanks, Mary. :)
Thanks to the girls for protecting Scruffy Dog. Sorry but I’m a bit perturbed at the guys for insisting on leaving her/him in danger. (I also keep spare leashes in the trunk of my car.)
When I got back from tour, Mum had been in our local hospital for most of the week. The diagnosis, ‘a large tumour in the neck, exactly where brainstem meets spinal column’, have been drip fed to us over the previous week. We knew we were heading for major surgery, high risk of horrific side-effects, and that assuming she survived the 12 hour surgery.
Covid restrictions meant only one visitor in hospital and my dad had been holding this role. He is the worlds worst carer, despite a huge heart and deep love for my mother.
There were six days before surgery date and, very high on steroids, Mum was allowed home. And so I stepped out of life, and into my role is carer. Who knew for how long? A week? We prayed more of course - but the shadow over survival, and if so with what quality of life, was like a heavy storm brewing overhead with no letup, no development, no wind to move it on, just stagnant air. Waiting.
After six days of being at home, lots of laughter but full of fear, surgery day arrived. The night before both my siblings and I stayed over - the first time just the five of us had been in the house alone for probably 30 years - and it was a very early start to get Mum up, washed all over in the special bug-killing shower gel, and into the car for the drive to the hospital.
Fortunately for me, while my position was always nurse-carer, my older sister is a doctor - so the ‘official and important’ stuff was dealt with by her. Perfect teamwork.
We waited for five hours in the waiting room on the ward. Maybe the longest five hours ever? Entertainment became surreal. One of the machines bleeping played (in very mechanical bleeps) the opening five notes of a piece of Bach, and every time - mainly lying across a row of chairs - I burst into chorus with the rest of the phrase. And there was interpretive dance too - after lifting my mum onto the toilet - literally anything to distract from the reality of what was going on.
The biggest laugh, which I pray didn’t feel at her expense (though honestly don’t think she was in a state to care), was when Mum suddenly gasped. She grabbed her forehead and made excruciating pain noises. My sister and I were horrified ‘What’s wrong? What’s wrong?’ We shouted jumping up and poised to raise the alarm. ‘I can’t remember the name of the dog at the hairdressers!’ she almost sobbed.
Never fear, a quick Instagram check - after a mad guessing game - Elvis. Of course it’s Elvis! (This may have been relayed in schrade fashion - why wouldn’t you?!) Crisis averted.
And, almost immediately, the team were at the door. It was time. Nurses, Anaesthetist, the Consultant and his sidekicks, and they wheeled her away. Never to really be seen in the same way again.
Twenty-four hours later, all four of us (Dad, two siblings) were allowed to see her on HDU. In slurred speech she introduced us as ‘her two brave boys’ and ‘her two naughty girls’ To become our legacy!
Things went pear-shaped, tits-up, disasterous shit from then on.
Jumping from HDU, ICU, HDU, ward, ICU, HDU, and so it went on. There were another seven brain surgeries to follow.
For those of you shuddering at the dollar signs floating in front of your eyes, welcome to our (very fast failing) NHS. It cost not a penny.
On Mum’s 75th birthday three weeks after the initial surgery, about three operations in, she fell into a coma. In fact, she never came round after surgery number four - this one an emergency surgery in the middle of the night.
The coma lasted three or four weeks, but to be honest, maybe they were some of the easier weeks. Everyday we would pitch up. Sit by her. Hold her hand and talk to her like she was there, part of the conversation. We would give her a gentle wash, massage her hands and feet, and read to her.
Regaining consciousness didn’t really improve things. She never really returned to us. She would sit and stare blankly, no sign of recognition and no ability to do anything for herself. Dark, dark days as we would sit and play her favourite films desperately hoping for a spark of recognition. None came.
After four more surgeries with no improvement, but on raising alarm bells - by which I mean - amongst other things - breaking down in a random corridor and meeting one of Mum‘s ICU nurses we hadn’t seen for weeks, and with the care of a beautiful newly-qualified Neuro Doctor, another scan was done.
This showed a new and extensive bleed on her brain,
In the biggest neuro-department in Europe, the Consultant told us ‘Every doctor in our department has operated on your mum’.
There was no question in any of our minds that letting her die was the very best option for her.
Mum wasn’t in a rush. It took another 23 days before she eventually slipped away. 02/09/22. She had only one dose of paracetamol and was peaceful for the whole 23 days. Surrounded by family. Surrounded by love.
Oh. Was this prompted about me?! Sorry I got distracted!
My lasting memory was my abundance of cheer. I would arrive at the hospital, put on my mask (metaphorical, but of course also literal) and whatever horrific state I found her in, I would put on my best loving, caring and upbeat voice and get on with the care she needed. Not one to hide my emotions - really ever - in ‘normal’ life, I took on a whole new ability.
There wasn’t room for tears and sadness until the end. There needed to be gentle care and an ever living feeling of hope. How else was she going to find the fight to improve?
My last gift to my mum - not with standing playing her Unaccompanied Bach Violin Sonatas the night before she left us - was the promise that I made to her in those last days at home. She made me promise ‘even if she was half dead’, I would shave the whiskers on her chin.
How do you judge ‘half-dead’? - especially when holding vigil!
Early morning, private moments, just me and her. I kept my promise. She left this world bristle free.
I feel lucky to have read this extraordinary comment today. The humor, the heartbreak, the promises kept—all of it wonderful. ❤️
Thank you so for your kind words. They mean so much x
This is beautifully and soulfully written. ❤️❤️❤️
I stayed with my Dad as he was dying. Before he lost speech , he urged me to not forget to feed the horses. As he lay dying I kept telling him the horses were fine, not to worry, I'd take care of them. He hadn't had horses since he was a child.
That feels both heartbreaking and very sweet! Thanks so for sharing ❤️
Your story about your mom was filled with tenderness, humor and love. ❤️ Thank you for sharing with us!
I love your funny memory of your mother gasping as she tried to remember the hairdresser's dogs name:) I tried my best as well to stay light and pleasant around my dying husband. I'm not so sure that was good. Most if the time I would cry my tears when he was not around.
So hard isn’t it… there can’t be a right way I guess. We do what we can in the moment, and I’m very sure your husband knew this. Much love to you - and glad you enjoyed the memory, I always look out for Elvis when I pass by! ❤️
Thank you Rebecca!💜
Just read how recently your husband died and come back to give you a big hug xx
Thanks for the hug 🫂 💗
Beautiful and lovely and here is to your mum!!! Thank you for sharing this! I took care of my mother when she was diagnosed with ovarian cancer. When she died, with humor, what she was teaching me was how to live.
If one chooses to dwell, life can be seen as full of missteps--but that is or can be Self-flagellation. From a vantage point of age which I never expected--I could have made other choices- of course-we all could- but essentially I believe most do their best in a world that is complex and can be seen as unfair as so many suffer and are suffering way beyond the self. I have immense gratitude to my teachers who led by example, especially Lee Stern-- who never hesitated to climb up 6 flights with a peanut butter sandwich--working for what was beyond the personal to the universal.
Ooof, the self-flagellation rings so true. I lived in that headspace such a long time, and in many ways, I think we’re encouraged to. Society can be judgmental, but I love your reframe and I’ve come to belief that myself. We are all doing the best we can with what we know in an often hard world.
So difficult and increasingly more so, when I was in self flagellation period my friends were Billie Holliday, Lou Reed, Bessie Smith.. not Sylvia Plath..etc I chose those that fit and I love them dearly.. part of the whole. xxoo
Ok, so this is really raw. When I went into my scheduled induction I was diagnosed with preeclampsia. My blood pressure was 201/103. I spent a week in the hospital with them trying to get my blood pressure under control. My daughter was healthy thankfully. After 24 hours of trying to have a natural birth because that was something I thought I would have control of after 3 years of fertility treatments and help with a donor egg, I looked at my wonderful doctor and said, I think we need a c-section. We were in shock and fought to go home which was right for us. Less than 2 years later, my best mom friend with her second had an extreme birth trauma and almost died, her daughter is extremely disabled. Her life has completely transformed and she has taught me so much. I love her dearly. She is powerful and a fighter and has a wonderful voice in writing and in her pain she can still comfort. I am in art school trying to find my voice ❤️🙏 🩸 🫀
Preeclampsia is dangerous. I am happy things went well for you and your child through it! One of my best friends from college had it with her 3rd child & they had to take her via ambulance for an emergency C-Section. She didn’t see her son for 3 days as they were stabilizing her after delivery. A close friend of mine who was older than me lost her daughter to a very sudden onset of preeclampsia. Her granddaughter lived and my friend and her husband were very close to their son-in-law, an essential in their situation. I am sorry for your friend’s experience. Her daughter is beyond lucky to have her as her mother. I hope your artwork helps you on your journey.
I was in the lost-me space after my daughter left for college. It took a couple years to know who I was, and that after daily morning intentions to ‘be me’. Now, facing back surgery this month, feeling physically and emotionally vulnerable, I don’t know who I am again. If I am not my quick moving doing self, do I have any worth?
I wonder sometimes if this feeling of dislocation and worthlessness is essential for our ability to renew ourselves. I hear you loud and clear. Losing my husband 2 years ago, I still wrestle with feeling insignificant, yet do experience brief moments of deep connection. I wish you great good luck with your surgery and will look for you. Keep writing.
Sending you love and strength for your surgery, Kathryn. You have worth, always. ❤️
I will imagine you emerging for your post surgery chrysalis self as an even stronger and quicker version of yourself❤️
You will find your new self. Though more vulnerable you will hopefully make new discoveries and some of them will be life enhancing.🙏
Wishing you all good things. 💕
For a year and a half I made most of my decisions based on my husband's illness. Teach, take leave, teach, oh damn, sorry kids, sorry co-teacher, this is not good news, teach and tell 6 year olds I am back to try to pull through the last 3 weeks of school, because my husband died.
How did I navigate all this, long walks, when I could go for walks, and a camera so I could keep an eye on my husband, and a little book called The Caregiver's Tao Te Ching. These two things were a big help to me. I really didn't find anyone who I could talk to, who would really understand what I was going through. I didn't really want to waste my breath with those that were asking, just to be asking. It was too sacred to share. I now am searching for me. I was the caregiver of my terminal husband, now I am the widow. All the things I was observing others do (that I secretly dreamed of doing after my husband died) take trips, eat in restaurants etc, I don't know how to do. I feel like a wanderer, not able to make decisions. It has only been a little over a month since my husband passed, so I know I need to give myself time to gather up the pieces of who I am now. I keep looking for a retreat to help me with this process, but haven't found the right one, or maybe the truth is I am just really scared.
I haven't lost my husband, but I have lost a daughter, and the one thing no one ever told me is how much grief feels like abject terror. I always thought it was sadness, but to this day, I have never felt sad. It's like that feeling in your gut when you're sleeping peacefully upstairs and you hear glass breaking downstairs, and you're alone and don't have anything to serve as a weapon. That adrenaline, that sheer primal horror, panic, terror at what you know is coming up after you. That level of fear. No one ever told me. And even after 16 years, two books on grief, and a world of sisters and friends who have rallied around me in the worst of times, I think it comes down to a quiet acknowledgement that we're not in control of anything. We have two choices in such situations: we can drown in the anguish and pain, or we can allow it to propel us into new and uncharted territory. But Julie, you're only a month out, which is to say, it's just happened to you. It will take a while to figure it out. In the meantime, remember to be gentle with yourself. When grief comes knocking on your bedroom door, don't ignore it. It will only get stronger. Just let it in, invite it to sit at your bedside, give it what it wants, feed it. After a long time, it will become a familiar face at the table.
Nancy, I am so sorry to hear that you lost a daughter. We are never the same after we lose these important people in our lives. I think that's where the fear comes from as well, that knowing we have no control over some things in life. It can all be taken away. The most understanding words someone said to me were: you must feel like you have lost a part of yourself. I thought to myself, that's it! I didn't know how I felt, but she nailed it. I was wandering and feeling homesick, but I couldn't go home because that door had closed. Your words to invite those feelings in are what I am trying to do, and to also use this experience to live an even fuller life, but first I just need to gather myself up and give myself lots of love and care. My first big decision was to resign my teaching position that was very stressful and take a much lesser paying job as a para. I just know I don't want to bypass this time of healing.
Much love to you Nancy for taking the time to offer your wisdom. Sending you well wishes on your journey!💜
Julie, thank you for sharing this very real experience of trying to reinvent yourself, give yourself permission to grieve, and to just be. I'm going to be the first person to commend you for giving up teaching. I'm way past retirement age myself, but am still teaching due to necessity. But this profession can take so much out of you, is often thankless, and requires so much mental and emotional energy. No doubt you are already feeling better just transitioning to a paraprofessional status.
But you said something that is so true -- it's as though we've lost some vital part of ourselves that we also know we can never retrieve, despite our best efforts or belief in magical thinking. You do well to be gentle with yourself, to give yourself lots of love, care, to be patient with yourself, to withhold any judgement (and to not buy into any judgement others might try to impart to you). And maybe it helps to know that as horrible as it is, you truly are not alone in this journey. Many others join you (me included), and there has always been some comfort I've gotten from knowing that as bad as it gets sometimes, I'm not the only person in the world who has lost anyone they love. Thank you, Julie!
I’ve not been where you are, but I have a friend who is just past the one year mark. I think scared is exactly it – – her healing is complicated by the chronically ill son, which means her caregiving is not over. But I think the fear is real. I read something beautiful in Susan McCain‘s book bittersweet last night, first said by Nora McInerney (whose book Terrible, Thanks For Asking may help you laugh through your tears, especially over a glass of wine as you take yourself out to that dinner you deserve), your husband will always be with you, an indelible presence, as you grow and heal, as you learn to live in this world again. I hope that gives you a little strength to get out and do something special for yourself today. May his memory be for a blessing. Big hugs.
Thank you so much Ilene, for taking the time to write this caring message. Oh my, I feel for your friend having to do another round of caregiving. I am sure you offer much support to her. Thank goodness we have so many angels on earth to help lift us up. Much love and well wishes to you and your friend!💜
Dear Julie, Thank you for sharing your experience and for the reference to "The Caregiver's Tao Te Ching" I just downloaded it on Kindle and there is nothing else that I know of like it.
I wish I could have been there for you to talk to. You are in what I call the “daze stage.” The shock and immediate duties are over, the food gifts are eaten, the flowers have faded. Now what? When you are up to it, I found this book to be helpful.
https://amzn.to/3X5GdTR
We live in what many call a grief illiterate society. People aren’t comfortable with, or don’t like, seeing or feeling other’s grief. Or they hide their own. Both are extremely unhealthy. Open up to those whom you trust. Your words, “I didn’t really want to waste my breath with those that were asking, just to be asking” is very wise on your part. There is no time limit on grief nor “correct “ way to grieve. This is your journey. Grieving is a process. Take it one day at a time as you learn who you becoming in this part of your life. ❤️
Sending much love xx
Julie - “It was too sacred to share.” I understand that. Maybe sitting with yourself and writing your journey through this whole experience is your start in the process of absorbing this magnificent grief and finding your pathway forward. You were dealing with so much that I would venture to say you were in survival mode, and maybe still are. You were a caregiver, you were taking care of your school children, etc. You were in a whirlwind and now that you aren’t swallowed up by so much of the day to day action, maybe now you can start to find your footing from so much upheaval. Maybe writing how you feel down will help you share it with others because your experience is worth speaking about. I’m already inspired by you, and you’ll find your way around all the rawness that has happened. Give yourself grace, gift yourself joy even if it’s in the smallest way like witnessing a sunset/sunrise, a bird singing, etc…Grasps the firsts and rebirths you will go through. Your life is as much a gift as was your husband’s. Lean into what comforts you. Wishing you a wealth of healing.💗
Sending big hugs and love to you from New Zealand, dear Julie 🤗🤍
Dear Julie
I set my career to the side during the pandemic while I was caring for my elderly aunt. I was juggling everything, from home health care to bills, all the meals, keeping her entertained, along with the little work I could do. My aunt eventually died at age 94 in 2022, at home, in her own bed, with hospice at the very end. I still beat myself up for the times I got impatient and frustrated. I wanted her to feel safe and cared for in her last years. While I know she was, I wasn’t perfect in the way I dealt with things, and it weighs on me.
As I'm typing this to you, Micheline, my husband is down south in San Jose, California, caring for his 95 year old mother, and her sister, who is 85. People like you are like angels on this earth. I know many people who are kind, compassionate even, but who would make ineffective caregivers because it's just not within their capacity to do those things necessary -- much of which is messy and thankless -- they just can't do it. You are different. A niece who would "set her career aside," -- no small decision, with potentially long range ramifications -- juggling health care decisions, paying bills, dealing with meal prep, keeping her aunt's spirits up, is nothing short of heroic. So let me be the voice of redemption here for a moment. You are, for me today, more inspirational than anyone I've known recently. You are the epitome of what is right with this country. You are an angel, someone who cares deeply, loves deeply. What should weigh on you, my friend, is the knowledge that you rose to an occasion, made your dear aunt's last days bearable. She knew she was loved. How could she not have known that? And what more peaceful, magnificent way to leave this earth, than to know you have been truly loved. Sit with that idea for a while, and especially in every moment in which you believe you were "not perfect."
Nancy ❤️❤️❤️
Oh, Nancy, that is so kind of you. Sending my love to your husband and his elders, too. I was the last person my aunt saw in the night when she died. I had a video monitor and I could see that she had slid off her pillow. I went in to quietly shift her back. She looked up at me, and said, “Oh, Mick” (my nickname is Micki, for those who don’t know). I took her hand and it was ice cold. I rearranged her and covered her back up. Sometime, a few hours later, she was gone. I’m glad she knew I was there with her before she went to join the ancestors.
So she was conscious until the very end, thanking you, acknowledging your presence. No moment in our lives is as sacred, and to share it, to bear witness and provide strength and love as that person is crossing over the River Styx, is a great privilege and honor. I truly hope in the days, weeks, years ahead, that you remember that, take it with you, and don't let anything else weigh upon you.
That is so comforting. Thank you, Nancy.
Thank you, Nancy, I'm now sitting in this perfect moment with healing tears after reading your beautifully compassionate and wise words. ❤️🩹
So beautifully said, Nancy.
Do not beat yourself up. You unselfishly set your career aside to care for your elderly aunt during the pandemic. If that isn’t love, what is? None of us are constantly patient under difficult circumstances. We do the best we can at the time. Be kind and gentle to yourself. ❤️
Thank you!
I am a mother of two beautiful adult daughters as well as a retired critical care RN and still teaching yoga for 20 years. I share that because I’m a caretaker deep in the marrow of my bones. I think all women, mothers or not, have an innate capability of being caretakers. My life blew apart about 8 years ago when I found out that my partner/fiancé was having an ongoing relationship with a woman 36 years his junior, I had 2 major surgeries within 5 months of each other, and my oldest daughter had her first psychotic breakdown. I left my fiancé, found another place to live, and had my daughter move in with me. Her partner of 13 years couldn’t deal with my daughters mental illness and I couldn’t blame him. The first six years of my daughter’s illness included multiple calls to 911 ( now 988), countless ER visits, multiple psychiatric hospitalizations, and multiple trials of finding the right medications to treat the mental illness she will always have to live with. She lost her home, her career, her 2 cats, and her partner. She’s been a bit more stable but like Suleika’s memoir, we live “ between two kingdoms”. My heart breaks for her at times and I’ve witnessed her courage, her wisdom, and her will to continue on. I discovered painting with acrylics during this time and who knew? Painting has been my succor, my lifeline at times. I’ve learned one of life’s deepest lessons that to be of service, no matter what, would break my heart wide open to a deeper compassion, an ability to listen more with my heart not my head, and to never judge anyone’s grief less than my own.
Suleika, your memoir and your commitment to art as an act of survival has been the truest inspiration for me, thank you, thank you, thank you.
" Painting has been my succor, my lifeline at times. I’ve learned one of life’s deepest lessons that to be of service, no matter what, would break my heart wide open to a deeper compassion, an ability to listen more with my heart not my head, and to never judge anyone’s grief less than my own." So beautiful, so true. ❤️
You are a strong woman, Lynn-Marie. This is beautifully written and expresses so much in different areas. Have you ever watched Steel Magnolias? I think I know every line by memory in it at this point. There is a heart wrenching scene in which it is the women who are the ones facing the crisis head on, as the men feel compelled to leave. We are wired differently. Like you, I never judge anyone’s grief nor trauma, as less than my own. May you continue to find strength and healing in your painting. ❤️
Oh yes! I’ve watched Steel Magnolias and I’m going to watch it again!!!
I never tire of it! I didn’t want to go into detail about that particular scene, not knowing if you had seen it or not. One of my nieces & I bounce lines off of each other from it when the mood strikes us. 😉
Thank you Susan. It seems like everyone in this beautiful Isolation Journal group is full of wisdom, encouragement, hope, and humility.
I wholeheartedly agree!
I resonate with the lost dog and keys adventure. It says something about the self and community of friends that takes responsibility for said return. Frenchtown is a beautiful community. I bicycled there weekly from Lambertville during COVID. I was up visiting my mom’s grave two weeks ago at Ferncliff in Hartsdale, I lost my keys. I retraced my steps all the way back to Malcolm X and Betty Shabazz’s grave. No keys. I finally climbed on the hood of my car to look in the windshield. Nil. As I swung my body around to get off the hood, the doors unlocked. The keys were hidden between my pants and body. What’s lost, shall be found… in life and Life.
This prompt brought tears mostly because I am also a mom who left my name at the door. And even 16 years after the worst of the crises have become memo, I find I am still a mom who left my name at the door. When I write my grief and try to sort through what it was like to be that hurt soul at the bedside who is only known as mom – – as generically as every mom in the NICU— my otherwise charming 19-year-old daughter asks me to erase that part of myself.
I coped by seeing her through my camera lens – – 17 rolls of real film in 49 days of her tenuous hospital stay, days she doesn’t remember because Athena was a new born. Days I spent crying in the maternal lactation room and nights when I could not sleep for fear she would not be there when I returned in the morning. I posted updates and pictures to a blog that I’ve taken down to help her heal.
Alexa, I see you because I am you. (Just asked Amazon to play your music and it starters with Red River Run!)
Suleika, you’ve done it again—made me laugh and cry at once.
I have answered this prompt over and over again in the past 19 years. Most recently in an essay that I am proud to have had published last week and I hope some of you might read.
https://www.eatdarlingeat.net/post/tomato-soup-for-the-soul
Happy Sunday to this beautiful community
The essay was nothing short of gorgeous, Ilene, and thank you for sending the link. Absolutely gorgeous.
As an aside, I copied that recipe, and since I'm growing thousands of tomatoes this summer, it's first on my list for a fall comfort food. Blessings to you, dear lady, and your precious Charlotte.
Thank you, Nancy! I have a better tomato soup for you :-) (Clarke’s is good, but a bit fussy). It’s something like this https://www.gimmesomeoven.com/roasted-tomato-soup/ when I find the right link, I’ll send it!!
Thank you so much, Ilene! When my tomatoes come in later on, this recipe will be fantastic to try. You are so appreciated!
I absolutely loved the dog story!!
When my husband, Frank, was dying of brain cancer, I knew I was hanging on by a thread sometimes. I had to keep working, for the insurance. I had to take time off, to take him to medical appointments, when he could no longer drive. When he became bedridden, I had to depend on my Mom and sisters to stop by, to fix him lunch, if I could not get away from work. His daughter, my stepdaughter, volunteered to take a turn doing it often. But I soon discovered, that was not a blessing after all. My house would be a disaster when I got home and my husband had given her his ATM card and password to get money for their lunch and anything else she might need. She took advantage of that and kept the card, using it often. He could not remember giving her the card or getting it back. When I finally got a minute to check the bank account, I was shocked. I cancelled the card and got the bank to issue a new one for me only. During all of this, I knew I needed to find some way of finding some serenity. Whenever I could, mostly when at night, I played music, listening with headphones. Many of the songs were upbeat, fast songs that I could dance around the room too. My dear friend Terri, made several CD’s, titled them “girlfriends” and all female singers. It was my salvation!! It’s been 20 years now, as he passed away in November 2004.
I have since remarried but I will be forever grateful for the music and my family and friends who got me through it.
First off I was bubbling over with giggles reading about Suleika’s 2-hour detour. That for sure could be a children’s book. So much adventure in 2 hours. I could hear the dialogue and see your faces so vividly as if this was a small play acting out in my head. I could see it all so clearly. Jon, “Why do you have that dog on a leash?” 😂 The dog I envisioned could look nothing like the dog you led back home, but he was scruffy and happy all the same. What a delightful and lovely adventure. So colorful and vibrant. Dogs and icecream. 🐶🍦
Then when I read Alexa’s submission, about half way through I had to put my phone down as the tears flooded my eyes. I am her, she was me…I’ve been that mom and I am still her.
My daughter had cancer and I dove down to the deepest depths to care for her. I shed my skin, myself, waved goodbye to all my hopes and aspirations, and dove straight down to the bottom. I immersed myself in her care. Somehow I managed to learn to breathe in that water without coming up for air. The weight of it, slogging through it when it became murky and hard to find my way.
It’s been a little over 5 years since her diagnosis and she is thriving, but I’m not. She is out of that water, dried off, restored, renewed, and in a new water less murky, it’s vibrant, crystal blue, filled with life. I find myself still in the murk, tangled in the aftermath, tangled in the neglect for myself. Sometimes I am able to pull myself up out of that murky water, but I’m still dripping in it, smelling like it, tasting it. Unable to find a towel to dry off, unable to wipe off the stains and residue from being in such murk for so long.
The residue is the guilt and shame for not being able to bounce back fully. Lungs full of water and weight still choking on the residue.
Sometimes I’m able to join my daughter in her crystal blue surroundings. We splash and play, and I’m always reminded of how lucky we are. Even that joy is sometimes backed by survivor’s guilt.
I wish the transition from then and now was smoother. Even after writing this down I feel
guilt and shame that I struggled with this experience. I wasn’t the one sick, but it made me sick. It made me stop caring for myself, which I think I’d do all over again in order to soldier my daughter through back to the life she deserves. I would hope I’m wiser and better from this experience even though it feels like I lost so much of myself in it. Part of me feels those pieces of me that feel lost aren’t really lost they’re just drastically changed, they’re foreign in feeling, and I’ll come into myself again. Fully realized, fully alive.
I'm awed by how beautifully you've been able to articulate your experience, Stephanie. Keep doing that, keep writing. You will find your way through. ❤️
Thank you Suleika for that encouragement. It has been beautiful to find so many treasured souls this week who have been through similar experiences. TIJ is a place of inspiration and healing. I will keep writing my way through. 💗
Stephanie, I cried at Alex’s prompt for the same reason and your response has me in that place too. I am you and you are me in 19 years after my experience,, YOU have finally found the words to articulate how I feel.
Ilene - thank you 💗.
I too found myself in your beautiful essay you linked. Specifically this…
“And in doing that, I’d hidden how fragile I’d become. I’d shattered myself to protect my baby, though I didn’t realize it at the time. I was so exhausted that I didn’t quite see how alone I was.”
When I read that I had to put my phone down and let how much that resonated, sink in. I felt for you, and for so many other voices in this community and beyond who have lived this experience. We are bonded in our experiences, and there is a comfort in knowing we are really not alone.
Sending love to you as you gather up and integrate who you are now. You will have so much more wisdom, understanding and compassion for others after being broken open like this. 💜
Thank you Julie 🤗🥰💗
“I wasn’t the one sick, but it made me sick. It made me stop caring for myself, which I think I’d do all over again in order to soldier my daughter through back to the life she deserves.” This. Yes.
Stephanie-such a beautifully written articulation of mom feelings; I cannot express with such eloquence how much I feel the same. Four years ago, my son had a complete spinal cord injury. It was during the pandemic, and I wasn't allowed to be there. The past 4 years has involved so much fighting for him. It is so worth it, because he is doing so well. But the battle will go on forever. Even so far out from the orignal injury, I experienced a meltdown just last week -over a denial of an ongoing procedure that has helped him to live his best life. We (mostly me) will fight for it, of course. No one wants to hear about these grievances after 4 years. I feel so solitary and sometimes alone in the fight. But at the same time I know how lucky I am that he is here to fight for and I am indescribably grateful for that gift--he is in water that is filled with life, if not crystal blue.
It is hard to know when you are in the creative flow and when to take a break and recharge.
I have gotten lost in that fog and ruined many poems that way. But, you can always erase,
start over, begin again. Take another road on another day. The right image will come
in a dream, on a walk, when you are watching the birds…it’s all part of your journey.
Beautifully said.
Thank you Suleika for sharing your world and your heart with all of us. A gift to the world 🙏
Yes! I’ve been there too so many times! I find when my brain starts to spin its wheels while writing, it’s time for for me to leave my desk and go for a long walk outside.