I started to come apart in the aftermath of losing my husband. I was completely overwhelmed and disoriented trying to adjust to a brand new reality. It was a monster, and to a lesser degree, remains so. What anchored me to life? - long walks, mindful breathing, music, finding this collective at the right time (I had never journaled), losing myself in cooking and also developing a keener sense of observation and gratitude for simple things - my cat crossing my keyboard or a decisive nod from a sidewalk passerby.
One of the most unique and insightful pieces I've heard on telling our stories is itself a story, by Donald Davis. Here's the link if you're interested: https://youtu.be/wgeh4xhSA2Q?feature=shared
Nocapes, Your question, "What anchored me to life?" is just the question I need as a life line today. Thank you. And, deep happiness that your new reality is so beautiful and evolves moment to moment.
Yes. Exactly. If ever the simple instruction to live one day at a time were applicable, it is, as Suleika says, when the ceiling falls in. When the walls cave in, too, it is so difficult snd lonely to dig yourself out of the rubble. Merr survival is exhausting, but a victory in itself. Please be good to yourself. ❤️
One perk of waking multiple times during the night is being awake right when this newsletter comes out. I needed to see the message in your essay after a tough week grappling with some family health-related concerns. Thank you for sharing with such open-hearted vulnerability. Sending much love you way.
Dearest Suleika - I’ve missed your thoughts and words, in essence, your voice. While you are comforted by the words of others, your words are also comforting. So much love for you.
Oh, Margo - this right here: “ I learned more from her than I ever expected, like how to simply exist as a human being—a skill I am still working on.” Right!
As life brings swerves and curves and two-by-fours, the ability to regulate and experience peace in the midst of it all is necessary for survival. Yet wisdom can be elusive when we need her most. As I've gotten older, my greatest defense is to surrender - not giving up but allowing the situation to teach me and show me something I would otherwise miss. To bear witness rather than fight or hide from it. Like baby girl - to breathe. I'm convinced that chaos and calm and everything in between is a part of the journey. I hope to live with more grace and gratitude along the way. 🫶🏾
"As I've gotten older, my greatest defense is to surrender - not giving up but allowing the situation to teach me and show me something I would otherwise miss. To bear witness rather than fight or hide from it." Gorgeous and true. ❤️
This speaks volumes to me, Suleika! I’m incredibly awed by you and what an impact you’re able to make, leveraging your strengths, while being in a ‘weak’ position. I’m honored to be here! ✨
Suleika- Thank you for sharing your story. As always, your words capture my full attention, and I am grateful that you spoke on this particular issue. As a brain cancer patient, I too looked up my diagnosis and prognosis to see how much time I had left. I did this because I have my wife and two girls to consider. After reviewing numerous medical websites, I was devastated upon learning about my condition. Depression set in and I had no way of controlling it.
People would tell me that it will all work out. “You’re tough! You’re A Marine! You have been through worst!” But no Marine Corps training prepares you to take on this situation. They forget that I am human first before I am a Marine; that I have two little girls and a wife who depends on me. What about their feelings? They’re not Marines who have to mental toughness to deal with this. How do I instruct my ten-year-old to be tough and not to worry?
I got out of my depression by leaning more about my condition, and how to change my lifestyle to prolong my life. I stopped drinking alcohol even though I was a social drinker. I stopped eating processed foods and started eating more fruits and vegetables. Although I was very active with exercising, I found a passion to play tennis because it is the only thing, surprisingly, that keeps me balanced (I’m soooo addicted to it). Most importantly, I try to enjoy my life spending it with people who support me, rather than spending time with people who tell me unrealistic things.
The only issue I have a problem adjusting to is my side of the family not supporting me as I expected. I don’t know if it’s because they will outlive me -my mother, father, and my three siblings- but since I’ve been diagnosed, they’ve never stop by to see me. I struggle with this issue, and the only way that I find not to dwell on it is to distance myself with them as my therapist had suggested. Taking away the toxicity of how my own family reacts to my condition and replacing it with focusing on the support from others, is how keep myself from going insane.
Thank you so much for addressing this issue. I truly appreciate your efforts to discuss difficult topics and make suggestions on how to best address these issues. One love ❤️!
Ray, so many thoughts were running through my mind while reading your words. I don’t often use the word “hate, but I do hate cancer. We live in a society in which so many people don’t know how to respond to severe adversity, to traumatic situations in life. One of my brother’s sons was diagnosed with leukemia when he was 6 years old and I remember some of the comments made to he and his wife, which while made with good intentions, were anything close to positive or realistic. (I am happy to share that my nephew turned 26 in December.) I myself have the insidious physical disease of ME/CFS. I lost a few of my friends when I first had it in my 20’s; friends who I was very close to. Rather than trying to understand or educate themselves about my physical ailment, they became impatient with the limitations the disease placed upon my body. It went into blissful remission for years, but came back out in 2019 from severe stress. Your therapist was wise in his/her advice. Time and experience have taught me to only allow positive, caring people who truly have my back in life into my daily life. We can’t change people; they are who they are and it isn’t our responsibility to change them. It hurts when the very people we thought would be there for us in life, aren’t. But we can get through it by changing our own expectations for our own wants and needs. If letting go of some people in your life means a healthier emotional life for yourself, then do it. I have been through extraordinary life-altering changes in my own life the past several years and I am a different person as a result of it. The trauma and stress of these years are what brought my ME/CFS out of remission, but I accept it as part of my journey. Beautiful things can come out of our darkest moments. Trust me on this as I am a living example of it. You will be in my prayers and please keep us abreast of how you are doing as you traverse the waters of this thing called life. ❤️ (P.S. I love playing many sports, but tennis is my all time favorite sport. I miss being able to play it while my ME/CFS is active.)
Susan, thank you for your kind words. I admit that although I am very disappointed with my family, it’s also my fault for expecting them to react a certain way. I keep telling myself that they will come around, using the excuse that they can’t handle what will happen. But I’m not like them. I have morals, principles, and standards regarding the values of humanity. I can no longer expect people to react to my condition, my hopes, or my feelings. I must stay true to myself and let go of every aspect of what to expect, and just live in the moment; the moment that will take my breath away. Thanks again for your support and input. By the way, I hope you caught the finals of the Australian Open. It didn’t disappoint!
Ray, you are welcome. Remember to stay true to your own words: I must stay true to myself. It is the healthiest way to live. It is how I live my life. Yes, I did see the finals of the Australian Open!
I am sorry that yours has never gone into remission. It is a difficult disease to live with and sadly, not understood by too many people. If you ever want to connect, just let me know!
Ray, I am so sorry you are dealing with the additional wound of a family unable or unwilling to support you. It is disorienting, isn’t it? It is, also, with distance and time, revealing.
When my husband left me almost two years ago, my four children left me, as well. He is not their father. The betrayal cut through all that I had believed about my job, my joy, of being their mother. A good mother, as they told me often. All the pieces of my heart, broken, at my feet.
Your strength lies in your humility, your devotion to your wife snd children, snd ultimately, in your understanding that those that love you, are where your true healing begins, and ends. I send you love.
@Jacquelin Deslsles-Bangert, thank you for your kind words. Yes, I struggle with it because my family, who indoctrinated us in believing that family always comes first, have shown the complete opposite of what they have preach for so many years. I finally realized that I have no control of their actions, but I can create a new paradigm for my children by teaching them family values through practical application. We not only have to teach it, but we also have to show it which wasn’t done in our home during my upbringing. I can only hope to turn this damnation into my salvation by teaching and practicing love, affection, and unity to my children, so they will be able to understand the true meaning of family values. Thanks again for your input. It is truly valued! ❤️
You will bear good fruit, Ray, because your heart and mind have turned towards what truly matters. Your children will always have your example snd I pray their own lives will be a testament to your love. “ Damnation into salvation”. Damn! I love that!!!
Dealing with people’s response to my cancer has been as challenging as the disease itself. People I’ve known for ten years or more just melted away, and although it was amazing to me just who did show up, I am still nursing the disappointment I feel about the other ‘friends’.
At the same time I was in hospital a friend lost her 16 yo son to Sudden Adult Death Syndrome, and I have been troubled by the fact that even her own father and sister refuse to show up for that, accusing her of indulging in her grief. I tell you this because I think illustrates just how hard - in fact impossible - some people find dealing with mortality. The rejection, the coldness is so painful, even when we understand that it’s down to their own terror and anger at what can’t be controlled or neatly edited into a certain and positive outcome.
Valarie, thank you so much for sharing your thoughts and experiences. I too was nursing the disappointment of my parents, sisters, and friends who knew of my condition but never thought to reach out to say our do anything. In my family’s case, act accordingly to your son’s emotional needs during this dreadful time of my life, is the very least that they could have done. If they were more involved by coming over, seeing my children, taking the initiative to do things with me asking, I would be more happy to know that they do love and care for me and my family. Instead, they say that they love me over a text message. Really, a text messages??! These are the things that I just don’t understand, but now, I don’t have to worry about it anymore. Taking away the toxicity of this situation by spending time with the people who have been there since day one, puts my emotions and mental stability at ease. I really starting to love this community because I’m feel that I’m not alone. Thank you again for your support.
If you don’t mind, I would like to keep in touch regarding your love for dogs. I just received my little guys a month ago, and I love him dearly. I see you know and write about dogs which I’m learning how to train my little guys to respond to my seizures. London is currently going through basic obedience training and will start advance training soon. I would love to hear your feedback on this topic if you don’t mind.
Ray, thank you for your openness.... I know the pain of family rejection with a cancer diagnosis... mine was breast cancer.... mastectomy....1978. The only way I was able to cope was to distance myself from the toxicity. I was still me, I am intelligent, productive, but my mother relegated me to a "defective" status. It lasted until her death. Through counseling, I realized it was her perceptions, her issues. I choose to remove myself from the situation. I say this with a reserve..... it still hurts, we are taught from children, family is there for you..... mothers love their children..... Here again, the variances play a role..... a spectrum. Ray, your family is your wife and children. As extended family on TIJ, I stand with you. By the way.... my recurrence in 1990.... 12 years clean.... thought I was home free. I got serious with counseling..... the stress was killing me. She never knew about the second mastectomy. Made life changes as you have. Am 85.
Marilyn, I appreciate your support and your input. Yes, it is frustrating to me. I spent a lot of time crying for my family, but I have no more tears to shed. Since taking my advice from my therapist, to block out all the toxicity, I’m in a much better place. Thanks for sharing your thoughts and experiences. I look forward to our next meeting. Cheers!
It was surprising to me too learning that our families deal with our diagnoses their own way - and often in ways that don't support us. I had uterine cancer and am NED after five major surgeries. I actually had a cousin tell me that I didn't know what it was like to be close to death ( she was wrong), and also that I couldn't have medical PTSD ( also wrong). Keep playing tennis and enjoy moving your body! All the best to you❤️❤️❤️❤️
JeanineBee9, thank you taking the time to read and respond to my message. I truly appreciate it. I’m sure you were perplexed when your cousin said those words, and even more perplexed by her lack of empathy. That’s exactly how I feel about my situation with my family. What’s most disturbing is how certain members of my family managed to stay silent on the issue. Over and over again are start to think why? Is it because they can’t handle another person dying from cancer. At least tell me what you are feeling so I can understand, but the silence is probably the worst feel of them all. I hope they can come around, so we can grieve together. My door is always open to them, no need to knock! Thank you again for your time, your input, and your support. ❤️
Thank you for such a thoughtful comment. Family are always interesting. A long time ago, my step-father advised me to “hope for the best but expect the worst” and sometimes this can be helpful - so whilst we hope for a certain response, we are also prepared for the what others say and do that isn’t this. People have different reasons for keeping their distance: grief, worry about saying the right thing, simply not knowing how to support, being frightened that you will die, being in shock, having an unresolved issue with you that they haven’t raised and so on. Cancer brings out all sorts in us and our families and friends - the good, the bad, the ugly. I set up a Caring Bridge page - which isn’t well known here in the UK - and this was a blessing in disguise as it allows people to visit and find out what’s going on…. but I can also see behind the scenes who has visited. So I’ve been surprised at who has cared enough or been curious enough to take a peak. It’s also been helpful in that seeing people who haven’t dropped by, finding alternative ways of communicating - usually a friendly holiday card or birthday card from me to them so that they can see that I am interested in their lives and the world hasn’t stopped. I wish you, your wife and children all the very best with what you are going through. Keep playing those aces.
Thank you for sharing your thoughts, Juliet. Yes, I have to stop expecting things from people. I have thought that my family’s lack of response or action was due to them not being able to handle things. But, since my diagnosis, they have made decisions to help others, while my immediate family was left behind. For example: one of my sisters lives less than a mile away from me, and hasn’t been to my house when I received my diagnosis, wake brain surgery, radiation, and chemotherapy. My wife’s sister, who was staying in Maine at the time, came to NJ to watch my little one while my wife took me to the hospital. That’s is a 14 hour ride from Maine to NJ and another 14 hours returning. This is what I’m trying to understand but have difficulties with this particular situation. There are other situations that would make anyone sit and say what have I done to deserve this treatment, but I can’t dwell on them anymore. All I can do now is to spend time with the people who have been there for my family and me. This is the only recourse I have left. Thanks again for your support. By the way, England is an amazing place to visit and live.
Years ago, a doctor told me that a general prognosis means nothing. Every patient is unique. Ignore any odds - especially since they were probably calculated based on white males, who dominated all those studies. Your path is your own. I have all faith for you.
My father had a heart attack three weeks after my brother was born. The doctors told him he could expect to live another five years. He lived another 18 years. Things are happening in medicine all the time.
To go in the dark with a light is to know the light. To know the dark, go dark. Go without sight, and find that the dark, too, blooms and sings, and is traveled by dark feet and dark wings. -Wendell Berry
When one sense is taken away, the other senses become attuned and heightened.
Suleika - thank you for the raw truth of your words: we are all medical unicorns. We never know what is waiting for us around the corner, playing hide and seek. “Uncertainty is part of being human.” You sure got that right, and it is a lifelong struggle to get comfortable simply hanging out with that uncertainty. This past week, a very close friend - started treatment at MSK. She is still in shock having been diagnosed, operated, and infused in a very short time. The advice given to her by her care team is, “don’t dwell on it” which personally, I thought to be bizarre advice, because honestly - how can you not dwell on that life altering diagnosis? But perhaps what they should have said is: don’t focus on the median. Instead, channel the variation and embrace the uncertainty that makes us human. We are all flying by the seat of our pants on this wild ride of life. Thank you for sharing your story and your honesty. They are gifts, and an inspiration to so many. I wish you a long life of variation.
all summer i was facing doctors, including one at MSK, who said, "let us do the worrying," as if i could just abandon my worries at the foot of their expertise. oh, that we could airdrop into the front lines of medicine -- especially oncology -- and transplant the words you so wisely and finely offer: "don't focus on the median." i found myself paralyzed by the numbers and odds i was seeing as i of course did all my own worrying. dear suleika, i ache for you reading your words, knowing so well the topography you travel. and as i read through the incredibly loving comments, i marvel at the miracle of how much empathy and holy communion there can be as we all hold hands and pray each other strong.....
Your words, “ holy communion”, has brought tears to my eyes. As the world burns down around us, let us keep faith with one another. Praying you into a healthy life.
Barbara - you are so right. Suleika's words are powerful, and her approach to navigating "the topography" is more powerful than any oncology drug can provide. Good luck to you as well Barbara. We are are your community of holy communion.
I am a somatic experiencing healer! After pushing down my own trauma for 20 years it surfaced, I could no longer push it down and had to deal with my traumatic history. It was hell for 7 years, but I resurfaced like a beautiful lotus coming thru the mud, and ultimately studied Somatic Experiencing for 3 years so I could give back. Thankfully I’ve become genuinely me, no longer hiding .
Bless you all who are suffering or have suffered. This life isn’t any easy journey, and to be able to live through it and share our journey with others is a community of soul medicine. Love you Suleika, Holly, Carmen❤️❤️❤️❤️
Sherri Rosan, Somatic Healing sounds interesting. Is it solely a self-help practice or are there practitioners to help? Will get "Waking the Tiger" by Dr. Peter Levine as you recommended.
Sherri, Thanks for the book reco. I have a beloved yoga teacher who became a teacher of somatic yoga and now, I believe, a somatic healer. I've never understood and maybe you can help -- is this an approach that is part of "regular" therapy, or in addition to it? We know our daughter has somatic trauma from all her infant and childhood medical treatments. Some kids can go through it and move on; she cannot and 8 years of talk therapy has not gotten her too far. Looking for other avenues so any quick insight is much appreciated. Thanks~ Ilene
It’s not talk therapy. It’s moving safely into the body and feels ng good sensations as a foundation before approaching the trauma. And not to retraumatize the client. With a skilled practitioner it’s amazing how the client can be free. Trauma isn’t so much about the event but how the event gets frozen in the body. SE guides the melting process of the frozen trauma to guide the client to freedom.
Thanks Suleika - a brilliant piece of writing. I see statistics as an "ill-fitting" jigsaw in that there is so much discrepancy around their meaning. I did something different almost two years ago. I turned down the opportunity of a stem cell transplant. I didn't like how my body had responded to that point and simply wasn't convinced it was right for me or my rare mutation. It was a tough decision because I didn't know the outcome - other than a cure no longer being an option. I tried other chemotherapy that didn't work and just over a year ago I was given a prognosis of a few months to live. Specifically I was told it was highly unlikely I would see 2024. My mum died two weeks ago and I'm so relieved that she did not have to go through the pain of seeing another of her daughters die before her. Whenever I feel down, I remind myself I am a living miracle (!) and that always makes me chuckle. I do not dwell on the "what if's". Perhaps crazily, I do not "make the most of each day left" because that adds unnecessary stress and urgency. I utterly love the life I have right here right now. Excuse me - I must dash, my son is coming to visit and I need to dance in the shower whilst I wash my hair.
A big hug, Juliet. We each make choices that fit us. Thank you for the reminder, to live on our own terms, not by other's expectations or statistics! You're a miracle. No further qualification is needed. I hope you're having a lovely time with your son. Enjoy the small moments.
You are an inspiration. Loving the life you have right here right now is the goal, always. I hope you enjoyed your son's visit as much as the dancing in the shower.
Oh Suleika, i believe this is one of your essays that talk to me most. Whatever ordeal we go through, i believe stories of how others went through pain, heartbreak and grief are the greatest comforters. And I like that your conclusion is that these stories are powerful not only because they are inspiring but mostly because they make us feel less alone. “Somebody somewhere sometimes felt or feels as utterly lost and broken as I do now.” That is the magic of stories, told or written, sung or played. And just like Jon often said about music and songs, these stories often reach us when we most need them. Thank you both and this entire community for the magic ✨.
I agree, Nathanaëlle. My favorite books are those that have made me feel less alone in my experience. And this is what I hope my own writing about infertility and mental health does for others. The gift in sharing about our struggles is discovering that we are not alone. ❤️
"That they’ve loved and lost and continued on—maybe in this human form, maybe in the words they leave behind." This one has hit me so hard; the pain and heartbreak and deep privilege of loving so deeply. That the depth of our love ultimately cannot save anyone, but facing the grief and fear reflected back at us instead of avoiding or hiding from it has such an impact -- the importance of showing up. Thank you ❤️
Also, the imagery in Margo's essay about stepping over a rubbish bag reminded me of something I wrote a few months ago about opening up and examining those rubbish bags that are handed to us upon birth without our consent... https://tamzin.substack.com/p/rubbish-picking-for-gemstones (this seems awfully self-promo of me which I really don't mean it to be!)
I love your piece. It is so true that we start out with baggage that keeps getting added to and if will not just go away until you confront it, but as you say there are gems inside along the way that we can learn from and that form us.
Doesn't seem like a self-promo at all. We write our stories because we need to. And when someone else reads them and embraces them, it is like they have embraced our children, or seen our hearts, and that helps us heal. Clicking over to read it now.
I am trying to leave and scared to go. This time, I have others to consider, like my daughter who has grown up here, with this other person...this person who has morphed into a scary stranger, kind one moment and then days of us walking on egg shells. I fell apart again in the shower. It has been my "fall apart place" for a few years. I do not know how to put myself back together. I'm like Humpty Dumpty. I just want peace, I want comfort, and I will live not knowing if it will visit me again. Suleika, I am sending the strongest of healing vibes to you and I thank you so deeply for creating this place for us all to have a soft place to fall and a solid place to get up. (I'm still working on the getting up)
Mary, I can feel your struggle. I wish I was there to hold your hand as you walk this fragile journey into a brighter and safer light. I send you love and if I could, courage. ❤️
Thank you, Suleika, for always being so honest and open with us. I can’t imagine the fear that you are experiencing every day. I hope the fact that we are all pulling for you, praying for you (I don’t believe in God, but I pray to the universe all the time), and holding you in our hearts helps a little. Hoping and praying to the universe that this quarter’s biopsy brings continued good news. ❤️
When the COVID pandemic started, i became much more depressed (my depression started in 2018 after my MA graduation). During the pandemic, i could feel sth was wrong and i was unmotivated to be an English teacher, and as i had learned subconsciously through years, i tried to not only push away and suppress any negative thoughts and feelings, but also try not to listen to what these negative thoughts and feelings were telling me. Finally, in 2022, after being fired from a language institute where i worked as a teacher for a few months, i had this moment of "GOD, I FEEL SO MISERABLE, Spare me from this misery !!!!!🙏🙏🙏🙏. That was when i started going to weekly therapy sessions to solve my issues (anxiety, depression, and people-pleasing). Beside these, i didn't understand the emotions i experienced at all, especially the strong emotions of sadness and anger, and i was afraid to step out of my comfort zones.
Anyway, now after a few years, i understand my emotions much better than before, and i've become more courageous to try doing things i used to shun from doing in the past. I can also see this courage in my recent paintings as well (you can see a part of them in my tonight's Note).
I started to come apart in the aftermath of losing my husband. I was completely overwhelmed and disoriented trying to adjust to a brand new reality. It was a monster, and to a lesser degree, remains so. What anchored me to life? - long walks, mindful breathing, music, finding this collective at the right time (I had never journaled), losing myself in cooking and also developing a keener sense of observation and gratitude for simple things - my cat crossing my keyboard or a decisive nod from a sidewalk passerby.
Incredibly honored to have played a part in your anchoring. ❤️
Incredibly indebted, beholden and enamored - you're a mom, daughter, sister, friend to us all - Sending love and light your way -
One of the most unique and insightful pieces I've heard on telling our stories is itself a story, by Donald Davis. Here's the link if you're interested: https://youtu.be/wgeh4xhSA2Q?feature=shared
Thank you so much for your beautiful work!
Nocapes, Your question, "What anchored me to life?" is just the question I need as a life line today. Thank you. And, deep happiness that your new reality is so beautiful and evolves moment to moment.
You should know that I look for you every week. Sending love your way.
That means more to me than perhaps you will ever know. Thank you!
Yes. Exactly. If ever the simple instruction to live one day at a time were applicable, it is, as Suleika says, when the ceiling falls in. When the walls cave in, too, it is so difficult snd lonely to dig yourself out of the rubble. Merr survival is exhausting, but a victory in itself. Please be good to yourself. ❤️
Yes and yes. Beautifully put.
See you.🫶🏾
The simplicity of what what you share here makes it all the more profound. I think of you often and wish you peace and happiness.
Thanks Teri - I believe if we knew each other, we'd be very good friends. Sending love -
I agree. I get teary when you say that. Sending love right back!
Same.
Great words
✍🏼💫💛
I’m sorry for your loss. Your ways of coping are beautiful and inspiring. Wishing you well!
Gratitude for simple things - Amen to that!
One perk of waking multiple times during the night is being awake right when this newsletter comes out. I needed to see the message in your essay after a tough week grappling with some family health-related concerns. Thank you for sharing with such open-hearted vulnerability. Sending much love you way.
Love to you, Abby. I’ll think of you and send a blessing at 12, 2, 5 and so on. Tossing snd turning and praying.
❤️😘
Hear hear! Same here! Sending love your way.
Lots of love Abby
Thank you! 💕
❤️ thank you!
Sending you love, Abby. ❤️
Thank you! I’m okay. ❤️
Dearest Suleika - I’ve missed your thoughts and words, in essence, your voice. While you are comforted by the words of others, your words are also comforting. So much love for you.
Oh, Margo - this right here: “ I learned more from her than I ever expected, like how to simply exist as a human being—a skill I am still working on.” Right!
As life brings swerves and curves and two-by-fours, the ability to regulate and experience peace in the midst of it all is necessary for survival. Yet wisdom can be elusive when we need her most. As I've gotten older, my greatest defense is to surrender - not giving up but allowing the situation to teach me and show me something I would otherwise miss. To bear witness rather than fight or hide from it. Like baby girl - to breathe. I'm convinced that chaos and calm and everything in between is a part of the journey. I hope to live with more grace and gratitude along the way. 🫶🏾
"As I've gotten older, my greatest defense is to surrender - not giving up but allowing the situation to teach me and show me something I would otherwise miss. To bear witness rather than fight or hide from it." Gorgeous and true. ❤️
This speaks volumes to me, Suleika! I’m incredibly awed by you and what an impact you’re able to make, leveraging your strengths, while being in a ‘weak’ position. I’m honored to be here! ✨
Love your words of wisdom, Tammy! ❤️
This is beautiful and wise. Thank you.
Suleika- Thank you for sharing your story. As always, your words capture my full attention, and I am grateful that you spoke on this particular issue. As a brain cancer patient, I too looked up my diagnosis and prognosis to see how much time I had left. I did this because I have my wife and two girls to consider. After reviewing numerous medical websites, I was devastated upon learning about my condition. Depression set in and I had no way of controlling it.
People would tell me that it will all work out. “You’re tough! You’re A Marine! You have been through worst!” But no Marine Corps training prepares you to take on this situation. They forget that I am human first before I am a Marine; that I have two little girls and a wife who depends on me. What about their feelings? They’re not Marines who have to mental toughness to deal with this. How do I instruct my ten-year-old to be tough and not to worry?
I got out of my depression by leaning more about my condition, and how to change my lifestyle to prolong my life. I stopped drinking alcohol even though I was a social drinker. I stopped eating processed foods and started eating more fruits and vegetables. Although I was very active with exercising, I found a passion to play tennis because it is the only thing, surprisingly, that keeps me balanced (I’m soooo addicted to it). Most importantly, I try to enjoy my life spending it with people who support me, rather than spending time with people who tell me unrealistic things.
The only issue I have a problem adjusting to is my side of the family not supporting me as I expected. I don’t know if it’s because they will outlive me -my mother, father, and my three siblings- but since I’ve been diagnosed, they’ve never stop by to see me. I struggle with this issue, and the only way that I find not to dwell on it is to distance myself with them as my therapist had suggested. Taking away the toxicity of how my own family reacts to my condition and replacing it with focusing on the support from others, is how keep myself from going insane.
Thank you so much for addressing this issue. I truly appreciate your efforts to discuss difficult topics and make suggestions on how to best address these issues. One love ❤️!
Ray, so many thoughts were running through my mind while reading your words. I don’t often use the word “hate, but I do hate cancer. We live in a society in which so many people don’t know how to respond to severe adversity, to traumatic situations in life. One of my brother’s sons was diagnosed with leukemia when he was 6 years old and I remember some of the comments made to he and his wife, which while made with good intentions, were anything close to positive or realistic. (I am happy to share that my nephew turned 26 in December.) I myself have the insidious physical disease of ME/CFS. I lost a few of my friends when I first had it in my 20’s; friends who I was very close to. Rather than trying to understand or educate themselves about my physical ailment, they became impatient with the limitations the disease placed upon my body. It went into blissful remission for years, but came back out in 2019 from severe stress. Your therapist was wise in his/her advice. Time and experience have taught me to only allow positive, caring people who truly have my back in life into my daily life. We can’t change people; they are who they are and it isn’t our responsibility to change them. It hurts when the very people we thought would be there for us in life, aren’t. But we can get through it by changing our own expectations for our own wants and needs. If letting go of some people in your life means a healthier emotional life for yourself, then do it. I have been through extraordinary life-altering changes in my own life the past several years and I am a different person as a result of it. The trauma and stress of these years are what brought my ME/CFS out of remission, but I accept it as part of my journey. Beautiful things can come out of our darkest moments. Trust me on this as I am a living example of it. You will be in my prayers and please keep us abreast of how you are doing as you traverse the waters of this thing called life. ❤️ (P.S. I love playing many sports, but tennis is my all time favorite sport. I miss being able to play it while my ME/CFS is active.)
Susan, thank you for your kind words. I admit that although I am very disappointed with my family, it’s also my fault for expecting them to react a certain way. I keep telling myself that they will come around, using the excuse that they can’t handle what will happen. But I’m not like them. I have morals, principles, and standards regarding the values of humanity. I can no longer expect people to react to my condition, my hopes, or my feelings. I must stay true to myself and let go of every aspect of what to expect, and just live in the moment; the moment that will take my breath away. Thanks again for your support and input. By the way, I hope you caught the finals of the Australian Open. It didn’t disappoint!
Ray, you are welcome. Remember to stay true to your own words: I must stay true to myself. It is the healthiest way to live. It is how I live my life. Yes, I did see the finals of the Australian Open!
I definitely will. Thank you. ❤️
Susan, I also have ME/CFS, but mine has never gone into remission. I'm sorry that yours came back. I like your positive attitude. 💜
I am sorry that yours has never gone into remission. It is a difficult disease to live with and sadly, not understood by too many people. If you ever want to connect, just let me know!
I'd love to connect!
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Ray, I am so sorry you are dealing with the additional wound of a family unable or unwilling to support you. It is disorienting, isn’t it? It is, also, with distance and time, revealing.
When my husband left me almost two years ago, my four children left me, as well. He is not their father. The betrayal cut through all that I had believed about my job, my joy, of being their mother. A good mother, as they told me often. All the pieces of my heart, broken, at my feet.
Your strength lies in your humility, your devotion to your wife snd children, snd ultimately, in your understanding that those that love you, are where your true healing begins, and ends. I send you love.
@Jacquelin Deslsles-Bangert, thank you for your kind words. Yes, I struggle with it because my family, who indoctrinated us in believing that family always comes first, have shown the complete opposite of what they have preach for so many years. I finally realized that I have no control of their actions, but I can create a new paradigm for my children by teaching them family values through practical application. We not only have to teach it, but we also have to show it which wasn’t done in our home during my upbringing. I can only hope to turn this damnation into my salvation by teaching and practicing love, affection, and unity to my children, so they will be able to understand the true meaning of family values. Thanks again for your input. It is truly valued! ❤️
You will bear good fruit, Ray, because your heart and mind have turned towards what truly matters. Your children will always have your example snd I pray their own lives will be a testament to your love. “ Damnation into salvation”. Damn! I love that!!!
Dealing with people’s response to my cancer has been as challenging as the disease itself. People I’ve known for ten years or more just melted away, and although it was amazing to me just who did show up, I am still nursing the disappointment I feel about the other ‘friends’.
At the same time I was in hospital a friend lost her 16 yo son to Sudden Adult Death Syndrome, and I have been troubled by the fact that even her own father and sister refuse to show up for that, accusing her of indulging in her grief. I tell you this because I think illustrates just how hard - in fact impossible - some people find dealing with mortality. The rejection, the coldness is so painful, even when we understand that it’s down to their own terror and anger at what can’t be controlled or neatly edited into a certain and positive outcome.
Sending so much love to you, your wife and girls.
Valarie, thank you so much for sharing your thoughts and experiences. I too was nursing the disappointment of my parents, sisters, and friends who knew of my condition but never thought to reach out to say our do anything. In my family’s case, act accordingly to your son’s emotional needs during this dreadful time of my life, is the very least that they could have done. If they were more involved by coming over, seeing my children, taking the initiative to do things with me asking, I would be more happy to know that they do love and care for me and my family. Instead, they say that they love me over a text message. Really, a text messages??! These are the things that I just don’t understand, but now, I don’t have to worry about it anymore. Taking away the toxicity of this situation by spending time with the people who have been there since day one, puts my emotions and mental stability at ease. I really starting to love this community because I’m feel that I’m not alone. Thank you again for your support.
If you don’t mind, I would like to keep in touch regarding your love for dogs. I just received my little guys a month ago, and I love him dearly. I see you know and write about dogs which I’m learning how to train my little guys to respond to my seizures. London is currently going through basic obedience training and will start advance training soon. I would love to hear your feedback on this topic if you don’t mind.
It would be my pleasure to talk dog with you 😁
Thank you.😊
Ray, thank you for your openness.... I know the pain of family rejection with a cancer diagnosis... mine was breast cancer.... mastectomy....1978. The only way I was able to cope was to distance myself from the toxicity. I was still me, I am intelligent, productive, but my mother relegated me to a "defective" status. It lasted until her death. Through counseling, I realized it was her perceptions, her issues. I choose to remove myself from the situation. I say this with a reserve..... it still hurts, we are taught from children, family is there for you..... mothers love their children..... Here again, the variances play a role..... a spectrum. Ray, your family is your wife and children. As extended family on TIJ, I stand with you. By the way.... my recurrence in 1990.... 12 years clean.... thought I was home free. I got serious with counseling..... the stress was killing me. She never knew about the second mastectomy. Made life changes as you have. Am 85.
Marilyn, I appreciate your support and your input. Yes, it is frustrating to me. I spent a lot of time crying for my family, but I have no more tears to shed. Since taking my advice from my therapist, to block out all the toxicity, I’m in a much better place. Thanks for sharing your thoughts and experiences. I look forward to our next meeting. Cheers!
Dear Ray-
It was surprising to me too learning that our families deal with our diagnoses their own way - and often in ways that don't support us. I had uterine cancer and am NED after five major surgeries. I actually had a cousin tell me that I didn't know what it was like to be close to death ( she was wrong), and also that I couldn't have medical PTSD ( also wrong). Keep playing tennis and enjoy moving your body! All the best to you❤️❤️❤️❤️
JeanineBee9, thank you taking the time to read and respond to my message. I truly appreciate it. I’m sure you were perplexed when your cousin said those words, and even more perplexed by her lack of empathy. That’s exactly how I feel about my situation with my family. What’s most disturbing is how certain members of my family managed to stay silent on the issue. Over and over again are start to think why? Is it because they can’t handle another person dying from cancer. At least tell me what you are feeling so I can understand, but the silence is probably the worst feel of them all. I hope they can come around, so we can grieve together. My door is always open to them, no need to knock! Thank you again for your time, your input, and your support. ❤️
Thank you for such a thoughtful comment. Family are always interesting. A long time ago, my step-father advised me to “hope for the best but expect the worst” and sometimes this can be helpful - so whilst we hope for a certain response, we are also prepared for the what others say and do that isn’t this. People have different reasons for keeping their distance: grief, worry about saying the right thing, simply not knowing how to support, being frightened that you will die, being in shock, having an unresolved issue with you that they haven’t raised and so on. Cancer brings out all sorts in us and our families and friends - the good, the bad, the ugly. I set up a Caring Bridge page - which isn’t well known here in the UK - and this was a blessing in disguise as it allows people to visit and find out what’s going on…. but I can also see behind the scenes who has visited. So I’ve been surprised at who has cared enough or been curious enough to take a peak. It’s also been helpful in that seeing people who haven’t dropped by, finding alternative ways of communicating - usually a friendly holiday card or birthday card from me to them so that they can see that I am interested in their lives and the world hasn’t stopped. I wish you, your wife and children all the very best with what you are going through. Keep playing those aces.
Thank you for sharing your thoughts, Juliet. Yes, I have to stop expecting things from people. I have thought that my family’s lack of response or action was due to them not being able to handle things. But, since my diagnosis, they have made decisions to help others, while my immediate family was left behind. For example: one of my sisters lives less than a mile away from me, and hasn’t been to my house when I received my diagnosis, wake brain surgery, radiation, and chemotherapy. My wife’s sister, who was staying in Maine at the time, came to NJ to watch my little one while my wife took me to the hospital. That’s is a 14 hour ride from Maine to NJ and another 14 hours returning. This is what I’m trying to understand but have difficulties with this particular situation. There are other situations that would make anyone sit and say what have I done to deserve this treatment, but I can’t dwell on them anymore. All I can do now is to spend time with the people who have been there for my family and me. This is the only recourse I have left. Thanks again for your support. By the way, England is an amazing place to visit and live.
Years ago, a doctor told me that a general prognosis means nothing. Every patient is unique. Ignore any odds - especially since they were probably calculated based on white males, who dominated all those studies. Your path is your own. I have all faith for you.
Thank you for this.
That’s great advice! And very comforting
My father had a heart attack three weeks after my brother was born. The doctors told him he could expect to live another five years. He lived another 18 years. Things are happening in medicine all the time.
To go in the dark with a light is to know the light. To know the dark, go dark. Go without sight, and find that the dark, too, blooms and sings, and is traveled by dark feet and dark wings. -Wendell Berry
When one sense is taken away, the other senses become attuned and heightened.
May it be so. 🙏
Ah. One of two favorite authors of mine! Thank you for sharing.
Thank you for this wonderful quote, I hadn't heard it before and it so rich.
Two beautiful essays; what a blessing for the beginning of a new day in the quiet dark as gentle rain. falls. Heartfelt gratitude to all.
As a. friend said to me once as she grappled with a terrible illness, "I don't live on paper, I live in the world."
I love this!
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Suleika - thank you for the raw truth of your words: we are all medical unicorns. We never know what is waiting for us around the corner, playing hide and seek. “Uncertainty is part of being human.” You sure got that right, and it is a lifelong struggle to get comfortable simply hanging out with that uncertainty. This past week, a very close friend - started treatment at MSK. She is still in shock having been diagnosed, operated, and infused in a very short time. The advice given to her by her care team is, “don’t dwell on it” which personally, I thought to be bizarre advice, because honestly - how can you not dwell on that life altering diagnosis? But perhaps what they should have said is: don’t focus on the median. Instead, channel the variation and embrace the uncertainty that makes us human. We are all flying by the seat of our pants on this wild ride of life. Thank you for sharing your story and your honesty. They are gifts, and an inspiration to so many. I wish you a long life of variation.
"We are all flying by the seat of our pants on this wild ride of life." An excellent point. ❤️
all summer i was facing doctors, including one at MSK, who said, "let us do the worrying," as if i could just abandon my worries at the foot of their expertise. oh, that we could airdrop into the front lines of medicine -- especially oncology -- and transplant the words you so wisely and finely offer: "don't focus on the median." i found myself paralyzed by the numbers and odds i was seeing as i of course did all my own worrying. dear suleika, i ache for you reading your words, knowing so well the topography you travel. and as i read through the incredibly loving comments, i marvel at the miracle of how much empathy and holy communion there can be as we all hold hands and pray each other strong.....
Your words, “ holy communion”, has brought tears to my eyes. As the world burns down around us, let us keep faith with one another. Praying you into a healthy life.
I am all in for "holding hands and praying each other strong". Beautiful words ....wishing you comfort and healing!
Barbara - you are so right. Suleika's words are powerful, and her approach to navigating "the topography" is more powerful than any oncology drug can provide. Good luck to you as well Barbara. We are are your community of holy communion.
"The privilege of heartbreak—to have loved that deeply, that ferociously, even when you know it’s going to hurt like hell."
🙌❤️ This is everything.
And scary too Eva, but it can transform us on this harrowing journey
I am a somatic experiencing healer! After pushing down my own trauma for 20 years it surfaced, I could no longer push it down and had to deal with my traumatic history. It was hell for 7 years, but I resurfaced like a beautiful lotus coming thru the mud, and ultimately studied Somatic Experiencing for 3 years so I could give back. Thankfully I’ve become genuinely me, no longer hiding .
Bless you all who are suffering or have suffered. This life isn’t any easy journey, and to be able to live through it and share our journey with others is a community of soul medicine. Love you Suleika, Holly, Carmen❤️❤️❤️❤️
Hi Sherri! I’m curious about the practice of somatic healing. Could you recommend a source for a beginner?
Read “Waking The Tiger” by Dr Peter Levine
Cool! I will. Thank you. 😊
Sherri Rosan, Somatic Healing sounds interesting. Is it solely a self-help practice or are there practitioners to help? Will get "Waking the Tiger" by Dr. Peter Levine as you recommended.
Practitioners. I myself studied it for three years. Their are practitioners all over USA and overseas
Sherri, Thanks for the book reco. I have a beloved yoga teacher who became a teacher of somatic yoga and now, I believe, a somatic healer. I've never understood and maybe you can help -- is this an approach that is part of "regular" therapy, or in addition to it? We know our daughter has somatic trauma from all her infant and childhood medical treatments. Some kids can go through it and move on; she cannot and 8 years of talk therapy has not gotten her too far. Looking for other avenues so any quick insight is much appreciated. Thanks~ Ilene
It’s not talk therapy. It’s moving safely into the body and feels ng good sensations as a foundation before approaching the trauma. And not to retraumatize the client. With a skilled practitioner it’s amazing how the client can be free. Trauma isn’t so much about the event but how the event gets frozen in the body. SE guides the melting process of the frozen trauma to guide the client to freedom.
Thanks!
Thanks Suleika - a brilliant piece of writing. I see statistics as an "ill-fitting" jigsaw in that there is so much discrepancy around their meaning. I did something different almost two years ago. I turned down the opportunity of a stem cell transplant. I didn't like how my body had responded to that point and simply wasn't convinced it was right for me or my rare mutation. It was a tough decision because I didn't know the outcome - other than a cure no longer being an option. I tried other chemotherapy that didn't work and just over a year ago I was given a prognosis of a few months to live. Specifically I was told it was highly unlikely I would see 2024. My mum died two weeks ago and I'm so relieved that she did not have to go through the pain of seeing another of her daughters die before her. Whenever I feel down, I remind myself I am a living miracle (!) and that always makes me chuckle. I do not dwell on the "what if's". Perhaps crazily, I do not "make the most of each day left" because that adds unnecessary stress and urgency. I utterly love the life I have right here right now. Excuse me - I must dash, my son is coming to visit and I need to dance in the shower whilst I wash my hair.
A big hug, Juliet. We each make choices that fit us. Thank you for the reminder, to live on our own terms, not by other's expectations or statistics! You're a miracle. No further qualification is needed. I hope you're having a lovely time with your son. Enjoy the small moments.
Thank you
Keep dancing, Juliet. You are beautiful!
You are an inspiration. Loving the life you have right here right now is the goal, always. I hope you enjoyed your son's visit as much as the dancing in the shower.
Both were good fun! Trying now to have some quiet time! Thank you!
Sending much love and strength to you. It sounds like you have an abundance of both already ❤️
Thank you
🤗
Oh Suleika, i believe this is one of your essays that talk to me most. Whatever ordeal we go through, i believe stories of how others went through pain, heartbreak and grief are the greatest comforters. And I like that your conclusion is that these stories are powerful not only because they are inspiring but mostly because they make us feel less alone. “Somebody somewhere sometimes felt or feels as utterly lost and broken as I do now.” That is the magic of stories, told or written, sung or played. And just like Jon often said about music and songs, these stories often reach us when we most need them. Thank you both and this entire community for the magic ✨.
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I agree, Nathanaëlle. My favorite books are those that have made me feel less alone in my experience. And this is what I hope my own writing about infertility and mental health does for others. The gift in sharing about our struggles is discovering that we are not alone. ❤️
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"That they’ve loved and lost and continued on—maybe in this human form, maybe in the words they leave behind." This one has hit me so hard; the pain and heartbreak and deep privilege of loving so deeply. That the depth of our love ultimately cannot save anyone, but facing the grief and fear reflected back at us instead of avoiding or hiding from it has such an impact -- the importance of showing up. Thank you ❤️
Also, the imagery in Margo's essay about stepping over a rubbish bag reminded me of something I wrote a few months ago about opening up and examining those rubbish bags that are handed to us upon birth without our consent... https://tamzin.substack.com/p/rubbish-picking-for-gemstones (this seems awfully self-promo of me which I really don't mean it to be!)
I love your piece. It is so true that we start out with baggage that keeps getting added to and if will not just go away until you confront it, but as you say there are gems inside along the way that we can learn from and that form us.
Doesn't seem like a self-promo at all. We write our stories because we need to. And when someone else reads them and embraces them, it is like they have embraced our children, or seen our hearts, and that helps us heal. Clicking over to read it now.
I am trying to leave and scared to go. This time, I have others to consider, like my daughter who has grown up here, with this other person...this person who has morphed into a scary stranger, kind one moment and then days of us walking on egg shells. I fell apart again in the shower. It has been my "fall apart place" for a few years. I do not know how to put myself back together. I'm like Humpty Dumpty. I just want peace, I want comfort, and I will live not knowing if it will visit me again. Suleika, I am sending the strongest of healing vibes to you and I thank you so deeply for creating this place for us all to have a soft place to fall and a solid place to get up. (I'm still working on the getting up)
Thank you Mary. ❤️
Blessings Mary
Thank you, Sherri.
Mary, sending you love and strength to do what you need to do to be safe.
Thank you, Abby. Love and Strength so appreciated.
Mary, I can feel your struggle. I wish I was there to hold your hand as you walk this fragile journey into a brighter and safer light. I send you love and if I could, courage. ❤️
Thank you, Suleika, for always being so honest and open with us. I can’t imagine the fear that you are experiencing every day. I hope the fact that we are all pulling for you, praying for you (I don’t believe in God, but I pray to the universe all the time), and holding you in our hearts helps a little. Hoping and praying to the universe that this quarter’s biopsy brings continued good news. ❤️
When the COVID pandemic started, i became much more depressed (my depression started in 2018 after my MA graduation). During the pandemic, i could feel sth was wrong and i was unmotivated to be an English teacher, and as i had learned subconsciously through years, i tried to not only push away and suppress any negative thoughts and feelings, but also try not to listen to what these negative thoughts and feelings were telling me. Finally, in 2022, after being fired from a language institute where i worked as a teacher for a few months, i had this moment of "GOD, I FEEL SO MISERABLE, Spare me from this misery !!!!!🙏🙏🙏🙏. That was when i started going to weekly therapy sessions to solve my issues (anxiety, depression, and people-pleasing). Beside these, i didn't understand the emotions i experienced at all, especially the strong emotions of sadness and anger, and i was afraid to step out of my comfort zones.
Anyway, now after a few years, i understand my emotions much better than before, and i've become more courageous to try doing things i used to shun from doing in the past. I can also see this courage in my recent paintings as well (you can see a part of them in my tonight's Note).