Welcome to “What’s Your Story?”, the occasional Tuesday space where I invite YOU to participate in the writing. Every episode, I offer a new writing prompt. In 200 words or less, YOU get to tell YOUR story.
Your Life Altering Experience
It was 1991. On Friday, I ran 6 miles and then went to a poetry reading at Brady’s. I woke up on Saturday and could barely run across the yard without needing to lie down. On that Spring day, I entered the world of chronic illness.
That’s the story that I’m gonna tell. How about you? What life experience changed everything? Big or small, when was your reality altered forever?
Was it a spiritual experience or a near death experience? Was it a job, a relationship or a degree? Did you get sober or did you get sick? Was it a day when everything finally came clear to you? Was it a day when everything fell apart? Maybe yours was just a minor shift. That’s ok! I can’t wait to hear.
Tip of the Week — Use your own voice. Sometimes to get started, I like to record myself telling the story into my voice memos app. Then I transcribe exactly what came out of my mouth.
Keep it 200 words or less. (Word Counter) Have fun. Don’t hold back. Leave your contribution in the comments. I’ll go first.
It started with a non-specific urethritis. Walking out of the office at the Kent State health center, an HIV pamphlet caught my eye. "If you've ever had an STD, you're at greater risk to be HIV positive." I'd never had an STD, but I had just had a UTI which I thought could have been sexually transmitted.
It was 1991. My sister Johanna and I were living with our parents at the time. I drove all by myself to Akron to be tested for HIV and then I returned home to wait for the results. For two weeks, I moved through the world as if there were a dark cloud hanging over my head. The fear of AIDS haunted my young anxious brain. On Friday, I ran 6 miles and then went to a poetry reading. Jo's new poet friend Kat slept over that night.
In the morning, I lay down in the backyard and I felt so weird in my body. My feet ached and my brain felt numb. It was different than any cold or flu I'd ever experienced. The next week, I returned to Akron to receive the negative HIV results but the weird symptoms never went away. I've been living with ME/CFS ever since.
On May 2nd 2011 I was attending a yoga teacher training class for the second day in a row. I had given it my all the day before, but on this day something was very different. It was as if gravity had become stronger. I couldn’t do any standing poses, I felt weak, nauseaus, flu-like. I had to lie down for the remaining week’s worth of lessons. I’ve been living with ME/CFS ever since and today I’m 99% bedbound. I lost life as I know it that day.
On November 27, 2013, I attempted suicide. Prior to my attempt, I had lost my job, income, home, and marriage. Most importantly, I lost a sense of self. I didn't know who I was or why my life mattered. As a seasoned mental health therapist, I am one of the few writers about suicide who is writing a phenomenological, lived experience account of what it was like for me to become suicidal, attempt suicide, survive, and thrive in the aftermath. Attempting suicide was the worst and best thing that ever happened to me. Bearing faithful witness to my story, has been the healing balm that has softened my sorrows. The self I am is not who I was before. Transforming and transcending my old life has been challenging and delightful. I no longer ashamed or guilty for what I went through. The night I was being detoxified in the hospital, my ex-wife told our neighbor, "I can't believe Michael messed up his suicide attempt, I would have been able to keep the house." My memoir will be an essential part of my legacy.
WOW! all I can say, I am so glad you are here with us today. the words at the end of your comment by your x wife summed up your suffering, how could she be so cruel? Would love to read your memoir. Rock on and keep living your authentic self, you matter.
At the end of the summer of 1970, I returned from a long time of travelling, when my Dad drove down our driveway, over a wooden bridge and out of reach. For a time. Long enough that I felt him gone. His green VW Beetle gone. His art and singing and his love of me, also gone. I went unconscious while still going about my life. I have no memory of two weeks. Now, I call that state, "going underground." I came back while seated in school where a friend gently asked if I was okay. I returned but stayed suppressed, dropped out of classes and sports, until a day in Spring when Mom announced Dad was coming home. I had visited him nearby, but coming home was different. I put small vases of flowers in every room of the house. Dad tried to stay but he left again. Then my anxiety spiked. I felt helpless to speak my mind. I wrote racing thoughts on a page. Later when we met at a friends house, I told him I missed him. He said nothing. It became hard for me to speak simply and sincerely for many years.
When I was 35, my boyfriend noticed a lump in my right breast. The cancer-industrial complex is real, and it processes people with the dumb efficiency of an assembly line. For the first few months of mammograms, biopsies, and consults, I was told again and again that the lump was likely benign. When my surgeon finally called with the news that I had a grade three tumor that had spread to my lymph nodes, I laughed, because of course, why not?
I was a strange character in my 20s and 30s. Beautiful, brittle, ferociously intelligent, weirdly—probably maddeningly—naive, and also a dedicated party girl, a devotee of peak experiences, a lover of music and art and psychedelics, kind of a scenester, petite and harmless looking (but my mercury is in Scorpio so I carried a shiv), a high femme with an a e s t h e t i c, constantly underestimated, especially by men. An arts journalist, I documented my experiences with wide-eyed narcissistic (in the original, mythic sense of the word) obsession. No one really knew what to make of me, least of all me. After my diagnosis, all that had to stop. My casual friends fell away and I found out who my ride-or-dies were. (Are. Those people are still with me.) A year and a half of chemo ruined my health, started my long slide into ME/CFS.
After a few years of miscarriages, the Doctor told me (not exactly in these words) that my shriveled up eggs would never produce a baby. We were at a devastating fork in the road: trust the universe and embrace a child-free life OR spent an enormous amount of money and put our trust in science. We just dropped those little science experiments off at college.
For me it was my hysterectomy. I had fought to have the surgery for years due to severe bleeding, endometriosis and adenomyosis - but I was constantly denied. Told I “might want kids” (despite being too sick to care for myself) or that I might “meet a man who wants kids.”
My needs and health always came second to a hypothetical baby and a hypothetical man. They finally did the surgery as an emergency when I began literally bleeding out in the ER… it was rushed and fraught with complications that almost cost me my life.
The recovery was 11 months long and incredibly difficult - but my life completely changed after that point. For the first time in years I could function again. I was only 24 and had never really had a life that wasn’t spent in bed or hospitals. I travelled, worked two jobs I loved, lived out my dream of becoming a theatre critic and moved all over the country having incredible experiences.
It also fundamentally changed my dating life - because having to tell potential suitors at 24 that you’re completely barren is a wee bit awkward.
As a result I’m now in my 40s and still childfree - dealing with a ton of new and debilitating disabilities. On my most difficult days I remind myself of the 10(ish) years of good health I had after that surgery - and I’m proud I made the most of them.
I had just turned 12 a few weeks before the hide-and-seek game that November night. The full moon was rising, and the sky darkened early as it tends to do in the fall. I had found the perfect hiding place: on the roof of a neighbor’s garage built into a hillside. It was fenced to prevent accidents, but that didn’t stop me from climbing the wrong side. The wind was knocked out of me when I woke on the concrete driveway. My brothers said they thought they heard a door slam as my little boy’s body hit the ground. I couldn’t walk due to the pain, but a teenage neighbor carried me to my house, and I crawled up the back stairs so my parents couldn’t hear me. Mom found out in the morning and took me to the hospital. Two slipped discs and a back brace for 6 months—no more sports. Dreams of a future physicality were altered. I stayed inside all winter but managed to play little league baseball my last season. We won the championship that year even with my injury. I tried to move up in the leagues the next year but wasn’t up to it. Thankfully, I’ve had no back problems and never have spent more than a few hours in a hospital for the rest of my more cerebral life. I will celebrate my 64th birthday next month.
In October of 2023 I was having upper back pain. My father's health was declining, so I attributed it to stress. So did my doctor. So did my physical therapist. I did all the PT exercises but the pain never seemed to go away, it just got worse and worse. So bad that I went to the ER one night, they gave me steroids. Weeks later I finally got a referral to an orthopedist, who ordered an MRI, which took even more weeks to schedule. On March 20, 2024 I went for the MRI at 6:30 a.m. That day I went to a lunch meeting, and turned my phone on silent. Driving home in the afternoon, a few blocks from home at a stoplight, I checked MyChart. "Malignant." They had been trying to call me all day. I was admitted to the hospital that night, and paced the circular hallway hour after hour. At 5:30 a.m. the hematologist came to my room and said they thought it was Multiple Myeloma. She called it good news, because it wasn't a stage 4 cancer that had metastasized to the bone. But Multiple Myeloma is not curable. Yet.
I ran a half marathon in September 2019. In November I turned 50 and went to Thailand. While there I pulled my neck attempting to do a difficult yoga pose, and subsequently worsened it with a thai massage. I couldn't run for several weeks when the pain finally subsided, only to fall ill with the worst flu of my life. I struggled to regain my fitness, I would go for a short run and be exhausted for days, and then... covid hit. I struggled to exercise without pain and fatigue, resorting to afternoon naps instead. In my desperation I applied for a new job, far away from home, thinking the change would do me good, instead I had the worst 12months of my life. Severe job stress, a bout of Covid, and a failing body meant I couldn't give my all and the lack of health care brought me back to the city desperate to improve my health. Multiple doctors visits, countless blood tests and many tears later, in March 2024 I finally got my ME/CFS diagnosis and my life before had ended, there would be no returning to good health, no more running, no more mountain climbing, I was housebound, jobless and alone.
I’m so sorry to hear that you’ve joined the club of the chronically ill - but I appreciate you sharing your story. Many people don’t understand how easily it can happen - your health and previous life wiped out in the blink of an eye.
There’s a great supportive community on here though - and we can all connect from bed!
Day of the week? I guess I do know - it was a Wednesday. I was at work as a database programmer, the position that I started after coming back from maternity leave. That was the day I got the most terrifying phone call I’ve ever gotten. It was my at-the-time husband, saying the pediatrician said the test was positive and was referring us to a specialist. A little while later, he called again. The specialist’s office had called and wanted to set up an appointment for the next day. That’s how I know it was a Wednesday, because that first appointment, it was on a Thursday. And the second appointment was the following Monday. OK, so it’s not the worst phone call you can get, but it’s got to be in the top 10 - “the specialist got your referral and they want to see you tomorrow.” My precious baby girl, just nine months old, had gotten the diagnosis that changed her life, and mine, forever.
here’s an excerpt - might still be over 200 words, but it captures the gist of the experience.
The next thing I knew, I was looking up into the soft stillness of the starlit midnight sky.
I heard a howl, more like that of a wolf or coyote than a human, that pierced the peace of the tranquil suburban landscape.
I soon realized the source -
It was me.
And I couldn't turn it off.
It continued for what seemed like forever (though in actuality it was probably only a couple minutes) until I could finally collect my thoughts, and process where I was - in the middle of my front yard.
"Mr. Waddell - Are you OK?”
In a rush, the officer's words came back to me.
Victim of sexual assault by her then-boyfriend…Given herself an abortion (with God knows what drugs)… In a secret relationship with a 21-year-old boy… Self-medicating with alcohol and pot…
"Yeah, I'm okay."
The biggest lie I've ever told. But it’s what you’re supposed to say, right?”
THe truth was, in no way was I okay. I'd failed. Failed my wife. Failed my family.
And especially failed my daughter.
It felt like an avalanche of shock, shame, and unbearable guilt had descended over me, leaving me unable to move, unable to breathe.
“What have I done?”
“Will she ever be okay again?”
“How could I not have seen?”
“I must be the worst father in the history of the planet!”
“How could I let my desires, my dreams, blind me like that?”
These thoughts echoed through my head, as I tried in vain to process what was happening.
I’d invested so much of myself, my time, and effort, as well as seventeen thousand dollars of the equity in our home, in pursuing my dream to be a health coach.
I’d done it for my family - or at least that’s what I told myself - to provide the life I wanted them to have, and to give my daughters the opportunity to fully pursue their own dreams. And here I’d been so self-involved that I had missed all the signs of depression and trauma, and lost sight of what is truly important.
The Pain arrives on August 19, 2019. I’m rinsing shampoo out of my hair when the left side of my face is suddenly beneath an oncoming freight train. My hands and feet start tingling. I quickly get dressed only to roll up into a ball on our bed. I am also nauseous, so I stay completely still for fear of throwing up.
This moment, like many to come, is entirely without nuance. I do not feel fear or sadness, and I do not think anything other than Owwww. The Pain is all and obliterates all else. My sense of self boils away into the stale air of the bedroom.
Ten minutes later, it stops. The headache, the burning, the nausea, all of it. I sit up and take a few deep breaths. I am sweating in my pajamas, though I don't remember putting them on. I sleep in shreds and slivers that night, and wake up with a pounding sensation that makes me shudder and wince at the thin strands of sunlight slicing through the bedroom curtains.
I was in college at San Francisco State University in the film department. My teacher was Fred Padula. He asked us to make a short film. We were to take still photos of the subject and then make the film. I was actively protesting the war in Vietnam. I noticed a housing development on the hillside where all the houses were identical. I wondered if the ideas and views of the people were also in lock step and what they would think about the war. I went door to door to ask them, carry my tape recorder. The result was a short film called “My House “. It won an international film festival award and a standing ovation. I was shocked. I entered the film in the national student film festival, and it won an honorary men-tion along with George Lucas’s Sofi short. For about 20 years I was jealous of the fact that he was rich and famous. Then I watched that short Sofi film recently and realized that he was a corporate feature producer, and I was a film poet. Also, a friend pointed out that his family bankrolled his production. (Don’t know if that’s true, I’ll have to ask him.) The success of my film scared me. I developed an idea that I was “afraid of success.” The event and that film class seem to have changed my life. Here is a link to the film:
When lockdown was upon us, I viewed it with the excitement of a school kid on a snow day. No getting up early, no long commute. Getting my work done in quiet. I’d knock off early and have a beer on my deck.
Little did I know that I had already inhaled the virus, likely through my mouth since I’m a mouth breather, since my main symptom was shortness of breath (as if the aerosol particles went straight to my lungs), and since my nasal swab came back negative.
I was sick for six weeks initially. Then better for three weeks. Then WHAMMO, I became sicker than I had been before - intractable fatigue, burning limbs, air hunger, lung burn, cognitive issues, like using incorrect verb tenses and not finding the word for spatula, instead having to bark at my husband, “the thing that turns the eggs!”
I kept working at my executive job. Then I couldn’t. Then I went back. Part-time, full-time, back to part-time. The dance went on for two years until finally I had to give it all up - my career, my hobbies, my joys in life. But I am finally rounding the corner on hope.
I’m so glad you’re rounding the corner on hope Amy - and that you’re sharing your journey with such honesty and transparency. It’s important for people to understand the devastation it can cause but also to celebrate incremental gains in health!
I’ve also been the person yelling “the thing that flips the eggs!” Solidarity fellow egg flipper!
Haha they really are. When I’m riding the struggle bus extra hard I will literally be practically mute and just gesticulating wildly like a game of bad charades. My carer never knows WHAT I’m trying to get at. Suffice it to say Pictionary or charades would clearly NOT be the game for me.
My most recent life altering experience happened in March 2024. I have had many in my 49 years of life. I should have died at-least 6 times that I know of. For certain God has a plan for my life and still needs me here on earth. I’m going to include the link to what I wrote after I got some of energy & a semi clear mind back. I’m still connecting things up 5 months later and having new memories pop up that was happening or harming me in the background; that although I was living in this nightmare allergy situation, I could not see the truth clearly. I don’t have the energy to rewrite it I’m sorry and condense it down so here is the link I’m sure it’s over 200 words. I apologize in advance for all the run on sentences— that’s just how I talk LOL blessings to all the writings above me. I’ve read everyone — what stories you all have. I’m honored to read them and share part of mine. Hal has encouraged me to keep writing and I’ve been wanting to but when I have a 2 hour window of energy I usually use it to try to shower and eat and maybe walk out to check the mail. I am mostly in bed because I’m so exhausted all the time. And have no energy. Every joint and muscle aches now that I’m detoxing too. Ok here’s the link I promised:
Two days before Christmas 2003. I left work early for the holidays, but I felt lousy and went to bed early. Next morning, burning up with fever. Urgent Care said my fever was 105.3. Sounds like a radio station. Told it was the flu. Two days after Christmas, terrible cough sent me to see my family doctor. He said it was bronchitis and prescribed antibiotics. A week later, returned to work with my cough still terrible. Boss let me leave early to go back to the doctor. He diagnosed pneumonia and sent me for a chest x-ray. That showed enlarged heart. Sent for echocardiogram. That showed congestive heart failure.
Twenty years later, I'm still here after three cardiac arrest, two strokes, a pulmonary embolism, and two heart transplants.
I have had many life altering g experiences, both positive and negative. I will focus on the one that made me feel the most comfortable with myself.
In spring of 2017, I chose to change my nursing license to inactive. At age 70, I wasn't comfortable with my abilities to make quick decisions for treatment. I had already retired, but this prompted deep introspection.
I had no single passion like all of my life's heroes. Was I an aimless drifter through life? No, I was always focused on something. It was just that the somethings changed often - politics, civil rights, housing inequities, public health nursing , raising children, running a home day care, fostering and adopting special needs children, advocating for children in the educational, judicial, and medical systems, volunteering, etc. It bothered me that I was a generalist. No single passion, no single area of expertise.
One precious day, the revelation came. The life decisions that I made were all to work for a better, kinder world. Suddenly, I felt whole.
Man pretty full circle moment here for me. Last year in January, this guy came to me at work and told me a girl I’d been sleeping with had HIV. I immediately panicked, and clocked out to go the nearest urgent care to get tested. I did not go in. I was too afraid to get out of my car. I went home and cried myself to sleep that night and for the next 5 months I lived in the scariest, most anxiety crippling experience I can imagine (other than this one time for like 15 mins when I did dmt a few years back lol). I couldn’t sleep, I couldn’t talk to people, I wanted to die, yet I was afraid of dying. I’d never been more afraid in my life. I eventually worked up the courage to get tested. When the results came back negative I’ll never forget the relief. I almost didn’t believe it because I’d gotten sick with flu like symptoms 2 weeks after me and the girl had first hooked up. There were many other factors that played into me believing I’d had it, but my doctor told me I might just be a hypochondriac, especially because a month later I insisted they test me again just in case. Negative again. Very embarrassing but I wanted to be sure! lol! Also weird coincidence, the girl who supposedly had it goes by “kat” as well lol. Pretty sure they guy who told me that was her ex and he lied. But yeah all I had drying those 5 months was my guitar, and the rooftop of the parking garage where I worked. It was all that kept me going. Don’t know where’d I’d be without it. My guitar was what woke up, and what kept me going. I would sleep with my guitar next to me so I could play it as soon as I woke up. A year later here I am, I’ve got a girlfriend with a kid on the way. She has a 2 year old already so I’m also a step dad. (I say stepdad but this is my kid yo, I love her like my own) I have band. I told my bandmates what happened to me last year, first time I’d ever told anyone other than my girl. They were so supportive it almost brought me to tears. But yeah I know what you mean. The dark cloud, the anguish, the fear. I’ll never forget that as long as I live. It made me so strong. All I had was me, and I was enough and now I’m fine. I’m sorry you’re going thru what you’re going thru with you’re condition. But I believe you will get thru it, and I’m glad you’re here sharing with the world the wonderful gift of music you have!! Kind of long sorry! Lol
About this time 7 yrs ago a dr decided I should get my prostate checked. The psa reading came back as 174. Quite hight. And this began the tortuous experience of being diagnosed with purportedly terminal illness. After biopsies and what seemed like a general Run around a Kafkaesque castle of miss assigned appointments and disconnected loss I eventually met with a consultant Oncologist who told me in the coldest and most abrupt manner what the future held.
She was very specific. 2.5 yrs with no treatment. 4 years with Hormones and 6 yrs with hormones and chemotherapy. This sort of news sent me into a swirling world of further disconnect. That evening her words sunk in and I went into shock. I new it was shock as was shaking uncomfortable and very cold. So I wrapped up warm got stoned and went to sleep. In the morning when I woke up I looked in the mirror and set my goal on surviving the 6 yrs in hope of new therapies coming in line. The cancer had spread through my Lymphatics up into chest cavity and has started to eat into one of my ribs. This is the end of year 7. Psa 1.5.
In 1981 I made a decision that changed my life entirely. My life leading to this decision bears some explanation. I was almost 40 years old, was living with my sister and niece. My father had recently passed away so my mother (who was a cancer patient) and was not expected to live much longer also came to live with us. I was the youngest child and was very immature and dependent on my mother.
Also at that time I experienced the break up of a relationship that was very meaningful to me.
I actually was emotionally ill but l did not know the extent of it at that time. I had been brought up in church and sunday school until I left home and no longer wanted anything to do with a god. I reached the total end of me and knelt beside my bed and told God that if He could do anything with my life it was now His.
My life changed drastically and positively. Not necessarily quickly and without pain but I know I have made the absolute best decision I ever made. I'm now fighting breast cancer and recovery from an addictlion. That has brought me into contact with some truly remarkable , loving people and I am very thankful for all of the things God has bought me through.
It started with a non-specific urethritis. Walking out of the office at the Kent State health center, an HIV pamphlet caught my eye. "If you've ever had an STD, you're at greater risk to be HIV positive." I'd never had an STD, but I had just had a UTI which I thought could have been sexually transmitted.
It was 1991. My sister Johanna and I were living with our parents at the time. I drove all by myself to Akron to be tested for HIV and then I returned home to wait for the results. For two weeks, I moved through the world as if there were a dark cloud hanging over my head. The fear of AIDS haunted my young anxious brain. On Friday, I ran 6 miles and then went to a poetry reading. Jo's new poet friend Kat slept over that night.
In the morning, I lay down in the backyard and I felt so weird in my body. My feet ached and my brain felt numb. It was different than any cold or flu I'd ever experienced. The next week, I returned to Akron to receive the negative HIV results but the weird symptoms never went away. I've been living with ME/CFS ever since.
Weird; it’s almost like the stress brought on by your anxiety triggered the ME/CFS.
Yes. That’s a good theory.
Wow! That must havew been quite the experience!
On May 2nd 2011 I was attending a yoga teacher training class for the second day in a row. I had given it my all the day before, but on this day something was very different. It was as if gravity had become stronger. I couldn’t do any standing poses, I felt weak, nauseaus, flu-like. I had to lie down for the remaining week’s worth of lessons. I’ve been living with ME/CFS ever since and today I’m 99% bedbound. I lost life as I know it that day.
Wow. Blessings on your beautiful journey. ❤️
Damn that gravity, it really does feel like the enemy sometimes.
Yup!
Michael Robin
On November 27, 2013, I attempted suicide. Prior to my attempt, I had lost my job, income, home, and marriage. Most importantly, I lost a sense of self. I didn't know who I was or why my life mattered. As a seasoned mental health therapist, I am one of the few writers about suicide who is writing a phenomenological, lived experience account of what it was like for me to become suicidal, attempt suicide, survive, and thrive in the aftermath. Attempting suicide was the worst and best thing that ever happened to me. Bearing faithful witness to my story, has been the healing balm that has softened my sorrows. The self I am is not who I was before. Transforming and transcending my old life has been challenging and delightful. I no longer ashamed or guilty for what I went through. The night I was being detoxified in the hospital, my ex-wife told our neighbor, "I can't believe Michael messed up his suicide attempt, I would have been able to keep the house." My memoir will be an essential part of my legacy.
Thank you for sharing Michael. I’m honored to have your words here. Hal
WOW! all I can say, I am so glad you are here with us today. the words at the end of your comment by your x wife summed up your suffering, how could she be so cruel? Would love to read your memoir. Rock on and keep living your authentic self, you matter.
Powerful
At the end of the summer of 1970, I returned from a long time of travelling, when my Dad drove down our driveway, over a wooden bridge and out of reach. For a time. Long enough that I felt him gone. His green VW Beetle gone. His art and singing and his love of me, also gone. I went unconscious while still going about my life. I have no memory of two weeks. Now, I call that state, "going underground." I came back while seated in school where a friend gently asked if I was okay. I returned but stayed suppressed, dropped out of classes and sports, until a day in Spring when Mom announced Dad was coming home. I had visited him nearby, but coming home was different. I put small vases of flowers in every room of the house. Dad tried to stay but he left again. Then my anxiety spiked. I felt helpless to speak my mind. I wrote racing thoughts on a page. Later when we met at a friends house, I told him I missed him. He said nothing. It became hard for me to speak simply and sincerely for many years.
Wow. Margot. I’ve never heard about this. Thank you so much for sharing. ♥️ H
When I was 35, my boyfriend noticed a lump in my right breast. The cancer-industrial complex is real, and it processes people with the dumb efficiency of an assembly line. For the first few months of mammograms, biopsies, and consults, I was told again and again that the lump was likely benign. When my surgeon finally called with the news that I had a grade three tumor that had spread to my lymph nodes, I laughed, because of course, why not?
I was a strange character in my 20s and 30s. Beautiful, brittle, ferociously intelligent, weirdly—probably maddeningly—naive, and also a dedicated party girl, a devotee of peak experiences, a lover of music and art and psychedelics, kind of a scenester, petite and harmless looking (but my mercury is in Scorpio so I carried a shiv), a high femme with an a e s t h e t i c, constantly underestimated, especially by men. An arts journalist, I documented my experiences with wide-eyed narcissistic (in the original, mythic sense of the word) obsession. No one really knew what to make of me, least of all me. After my diagnosis, all that had to stop. My casual friends fell away and I found out who my ride-or-dies were. (Are. Those people are still with me.) A year and a half of chemo ruined my health, started my long slide into ME/CFS.
Wow. I had no idea. What a wonderful share. Thank you, Rachel. ♥️
After a few years of miscarriages, the Doctor told me (not exactly in these words) that my shriveled up eggs would never produce a baby. We were at a devastating fork in the road: trust the universe and embrace a child-free life OR spent an enormous amount of money and put our trust in science. We just dropped those little science experiments off at college.
KK! I laughed out loud... and then I cried. It's beautiful. I'm so glad you shared. ❤️
Love this so much.❤️❤️
For me it was my hysterectomy. I had fought to have the surgery for years due to severe bleeding, endometriosis and adenomyosis - but I was constantly denied. Told I “might want kids” (despite being too sick to care for myself) or that I might “meet a man who wants kids.”
My needs and health always came second to a hypothetical baby and a hypothetical man. They finally did the surgery as an emergency when I began literally bleeding out in the ER… it was rushed and fraught with complications that almost cost me my life.
The recovery was 11 months long and incredibly difficult - but my life completely changed after that point. For the first time in years I could function again. I was only 24 and had never really had a life that wasn’t spent in bed or hospitals. I travelled, worked two jobs I loved, lived out my dream of becoming a theatre critic and moved all over the country having incredible experiences.
It also fundamentally changed my dating life - because having to tell potential suitors at 24 that you’re completely barren is a wee bit awkward.
As a result I’m now in my 40s and still childfree - dealing with a ton of new and debilitating disabilities. On my most difficult days I remind myself of the 10(ish) years of good health I had after that surgery - and I’m proud I made the most of them.
I had just turned 12 a few weeks before the hide-and-seek game that November night. The full moon was rising, and the sky darkened early as it tends to do in the fall. I had found the perfect hiding place: on the roof of a neighbor’s garage built into a hillside. It was fenced to prevent accidents, but that didn’t stop me from climbing the wrong side. The wind was knocked out of me when I woke on the concrete driveway. My brothers said they thought they heard a door slam as my little boy’s body hit the ground. I couldn’t walk due to the pain, but a teenage neighbor carried me to my house, and I crawled up the back stairs so my parents couldn’t hear me. Mom found out in the morning and took me to the hospital. Two slipped discs and a back brace for 6 months—no more sports. Dreams of a future physicality were altered. I stayed inside all winter but managed to play little league baseball my last season. We won the championship that year even with my injury. I tried to move up in the leagues the next year but wasn’t up to it. Thankfully, I’ve had no back problems and never have spent more than a few hours in a hospital for the rest of my more cerebral life. I will celebrate my 64th birthday next month.
Thanks for sharing J.E. -- I could feel that thud on the concrete. It's all been bonus since that night, I guess.
In October of 2023 I was having upper back pain. My father's health was declining, so I attributed it to stress. So did my doctor. So did my physical therapist. I did all the PT exercises but the pain never seemed to go away, it just got worse and worse. So bad that I went to the ER one night, they gave me steroids. Weeks later I finally got a referral to an orthopedist, who ordered an MRI, which took even more weeks to schedule. On March 20, 2024 I went for the MRI at 6:30 a.m. That day I went to a lunch meeting, and turned my phone on silent. Driving home in the afternoon, a few blocks from home at a stoplight, I checked MyChart. "Malignant." They had been trying to call me all day. I was admitted to the hospital that night, and paced the circular hallway hour after hour. At 5:30 a.m. the hematologist came to my room and said they thought it was Multiple Myeloma. She called it good news, because it wasn't a stage 4 cancer that had metastasized to the bone. But Multiple Myeloma is not curable. Yet.
Wow. Katherine. I was so glad to see your name pop up here. Thank you. I'm sending you so much love on your journey. We're not 35 anymore, are we? ❤️
Heck no we're not.
One precious day. You’re doing it, Annette. Thank you. ♥️ H
Slightly over, don't hold it against me.... :)
I ran a half marathon in September 2019. In November I turned 50 and went to Thailand. While there I pulled my neck attempting to do a difficult yoga pose, and subsequently worsened it with a thai massage. I couldn't run for several weeks when the pain finally subsided, only to fall ill with the worst flu of my life. I struggled to regain my fitness, I would go for a short run and be exhausted for days, and then... covid hit. I struggled to exercise without pain and fatigue, resorting to afternoon naps instead. In my desperation I applied for a new job, far away from home, thinking the change would do me good, instead I had the worst 12months of my life. Severe job stress, a bout of Covid, and a failing body meant I couldn't give my all and the lack of health care brought me back to the city desperate to improve my health. Multiple doctors visits, countless blood tests and many tears later, in March 2024 I finally got my ME/CFS diagnosis and my life before had ended, there would be no returning to good health, no more running, no more mountain climbing, I was housebound, jobless and alone.
Dammit. I'm glad to meet you, Lisa. I'm finding out that I'm not alone. Thank you. Hal
I’m so sorry to hear that you’ve joined the club of the chronically ill - but I appreciate you sharing your story. Many people don’t understand how easily it can happen - your health and previous life wiped out in the blink of an eye.
There’s a great supportive community on here though - and we can all connect from bed!
Thanks, yeah it's crazy how much your life changes!! Thankful for such a supportive community to connect with though
Day of the week? I guess I do know - it was a Wednesday. I was at work as a database programmer, the position that I started after coming back from maternity leave. That was the day I got the most terrifying phone call I’ve ever gotten. It was my at-the-time husband, saying the pediatrician said the test was positive and was referring us to a specialist. A little while later, he called again. The specialist’s office had called and wanted to set up an appointment for the next day. That’s how I know it was a Wednesday, because that first appointment, it was on a Thursday. And the second appointment was the following Monday. OK, so it’s not the worst phone call you can get, but it’s got to be in the top 10 - “the specialist got your referral and they want to see you tomorrow.” My precious baby girl, just nine months old, had gotten the diagnosis that changed her life, and mine, forever.
Oh wow. Clarissa. One of the top 10 worst phone is not a call I would want to receive. I'm so curious what happened next. Thank you for sharing. Hal
She is 20 and doing well, all things considered. I am sketchy on the details because it’s not really my business to be telling her story, y’know?
Great idea!
I just did a post on this!
here’s an excerpt - might still be over 200 words, but it captures the gist of the experience.
The next thing I knew, I was looking up into the soft stillness of the starlit midnight sky.
I heard a howl, more like that of a wolf or coyote than a human, that pierced the peace of the tranquil suburban landscape.
I soon realized the source -
It was me.
And I couldn't turn it off.
It continued for what seemed like forever (though in actuality it was probably only a couple minutes) until I could finally collect my thoughts, and process where I was - in the middle of my front yard.
"Mr. Waddell - Are you OK?”
In a rush, the officer's words came back to me.
Victim of sexual assault by her then-boyfriend…Given herself an abortion (with God knows what drugs)… In a secret relationship with a 21-year-old boy… Self-medicating with alcohol and pot…
"Yeah, I'm okay."
The biggest lie I've ever told. But it’s what you’re supposed to say, right?”
THe truth was, in no way was I okay. I'd failed. Failed my wife. Failed my family.
And especially failed my daughter.
It felt like an avalanche of shock, shame, and unbearable guilt had descended over me, leaving me unable to move, unable to breathe.
“What have I done?”
“Will she ever be okay again?”
“How could I not have seen?”
“I must be the worst father in the history of the planet!”
“How could I let my desires, my dreams, blind me like that?”
These thoughts echoed through my head, as I tried in vain to process what was happening.
I’d invested so much of myself, my time, and effort, as well as seventeen thousand dollars of the equity in our home, in pursuing my dream to be a health coach.
I’d done it for my family - or at least that’s what I told myself - to provide the life I wanted them to have, and to give my daughters the opportunity to fully pursue their own dreams. And here I’d been so self-involved that I had missed all the signs of depression and trauma, and lost sight of what is truly important.
The Pain arrives on August 19, 2019. I’m rinsing shampoo out of my hair when the left side of my face is suddenly beneath an oncoming freight train. My hands and feet start tingling. I quickly get dressed only to roll up into a ball on our bed. I am also nauseous, so I stay completely still for fear of throwing up.
This moment, like many to come, is entirely without nuance. I do not feel fear or sadness, and I do not think anything other than Owwww. The Pain is all and obliterates all else. My sense of self boils away into the stale air of the bedroom.
Ten minutes later, it stops. The headache, the burning, the nausea, all of it. I sit up and take a few deep breaths. I am sweating in my pajamas, though I don't remember putting them on. I sleep in shreds and slivers that night, and wake up with a pounding sensation that makes me shudder and wince at the thin strands of sunlight slicing through the bedroom curtains.
This was my first migraine, one of many to come.
I was in college at San Francisco State University in the film department. My teacher was Fred Padula. He asked us to make a short film. We were to take still photos of the subject and then make the film. I was actively protesting the war in Vietnam. I noticed a housing development on the hillside where all the houses were identical. I wondered if the ideas and views of the people were also in lock step and what they would think about the war. I went door to door to ask them, carry my tape recorder. The result was a short film called “My House “. It won an international film festival award and a standing ovation. I was shocked. I entered the film in the national student film festival, and it won an honorary men-tion along with George Lucas’s Sofi short. For about 20 years I was jealous of the fact that he was rich and famous. Then I watched that short Sofi film recently and realized that he was a corporate feature producer, and I was a film poet. Also, a friend pointed out that his family bankrolled his production. (Don’t know if that’s true, I’ll have to ask him.) The success of my film scared me. I developed an idea that I was “afraid of success.” The event and that film class seem to have changed my life. Here is a link to the film:
https://youtu.be/E_mwNapry2M?si=KF0vaxF8k2FTnvIX
Here is a link to a recent film about the memories of the world.
https://youtu.be/AnzP6RDjVOQ?si=X_ligZPGK3QVERsA
Peter! Your first Note. Yay. I look forward to watching your film. I’m glad you’re my friend. H
I just watched the film,Peter. Loved it! (FYI. It’s 2 1/2 minutes. Really worth the watch)
When lockdown was upon us, I viewed it with the excitement of a school kid on a snow day. No getting up early, no long commute. Getting my work done in quiet. I’d knock off early and have a beer on my deck.
Little did I know that I had already inhaled the virus, likely through my mouth since I’m a mouth breather, since my main symptom was shortness of breath (as if the aerosol particles went straight to my lungs), and since my nasal swab came back negative.
I was sick for six weeks initially. Then better for three weeks. Then WHAMMO, I became sicker than I had been before - intractable fatigue, burning limbs, air hunger, lung burn, cognitive issues, like using incorrect verb tenses and not finding the word for spatula, instead having to bark at my husband, “the thing that turns the eggs!”
I kept working at my executive job. Then I couldn’t. Then I went back. Part-time, full-time, back to part-time. The dance went on for two years until finally I had to give it all up - my career, my hobbies, my joys in life. But I am finally rounding the corner on hope.
I’m so glad you’re rounding the corner on hope Amy - and that you’re sharing your journey with such honesty and transparency. It’s important for people to understand the devastation it can cause but also to celebrate incremental gains in health!
I’ve also been the person yelling “the thing that flips the eggs!” Solidarity fellow egg flipper!
These cognitive workarounds are SOMETHING, aren’t they? 🤪
Haha they really are. When I’m riding the struggle bus extra hard I will literally be practically mute and just gesticulating wildly like a game of bad charades. My carer never knows WHAT I’m trying to get at. Suffice it to say Pictionary or charades would clearly NOT be the game for me.
My most recent life altering experience happened in March 2024. I have had many in my 49 years of life. I should have died at-least 6 times that I know of. For certain God has a plan for my life and still needs me here on earth. I’m going to include the link to what I wrote after I got some of energy & a semi clear mind back. I’m still connecting things up 5 months later and having new memories pop up that was happening or harming me in the background; that although I was living in this nightmare allergy situation, I could not see the truth clearly. I don’t have the energy to rewrite it I’m sorry and condense it down so here is the link I’m sure it’s over 200 words. I apologize in advance for all the run on sentences— that’s just how I talk LOL blessings to all the writings above me. I’ve read everyone — what stories you all have. I’m honored to read them and share part of mine. Hal has encouraged me to keep writing and I’ve been wanting to but when I have a 2 hour window of energy I usually use it to try to shower and eat and maybe walk out to check the mail. I am mostly in bed because I’m so exhausted all the time. And have no energy. Every joint and muscle aches now that I’m detoxing too. Ok here’s the link I promised:
https://open.substack.com/pub/blayney/p/poisoned-in-portland?r=8wr2f&utm_medium=ios
Thank you for sharing. I look forward to reading your story. H
Thank-you! Hal!! 🩷
Two days before Christmas 2003. I left work early for the holidays, but I felt lousy and went to bed early. Next morning, burning up with fever. Urgent Care said my fever was 105.3. Sounds like a radio station. Told it was the flu. Two days after Christmas, terrible cough sent me to see my family doctor. He said it was bronchitis and prescribed antibiotics. A week later, returned to work with my cough still terrible. Boss let me leave early to go back to the doctor. He diagnosed pneumonia and sent me for a chest x-ray. That showed enlarged heart. Sent for echocardiogram. That showed congestive heart failure.
Twenty years later, I'm still here after three cardiac arrest, two strokes, a pulmonary embolism, and two heart transplants.
It's been a wild ride.
Wow. That 2nd to last line took my breath away. So many bonus lives for one person. Thank you so much for sharing. Hal
Definitely playing the bonus round over here. Double overtime.
I have had many life altering g experiences, both positive and negative. I will focus on the one that made me feel the most comfortable with myself.
In spring of 2017, I chose to change my nursing license to inactive. At age 70, I wasn't comfortable with my abilities to make quick decisions for treatment. I had already retired, but this prompted deep introspection.
I had no single passion like all of my life's heroes. Was I an aimless drifter through life? No, I was always focused on something. It was just that the somethings changed often - politics, civil rights, housing inequities, public health nursing , raising children, running a home day care, fostering and adopting special needs children, advocating for children in the educational, judicial, and medical systems, volunteering, etc. It bothered me that I was a generalist. No single passion, no single area of expertise.
One precious day, the revelation came. The life decisions that I made were all to work for a better, kinder world. Suddenly, I felt whole.
Man pretty full circle moment here for me. Last year in January, this guy came to me at work and told me a girl I’d been sleeping with had HIV. I immediately panicked, and clocked out to go the nearest urgent care to get tested. I did not go in. I was too afraid to get out of my car. I went home and cried myself to sleep that night and for the next 5 months I lived in the scariest, most anxiety crippling experience I can imagine (other than this one time for like 15 mins when I did dmt a few years back lol). I couldn’t sleep, I couldn’t talk to people, I wanted to die, yet I was afraid of dying. I’d never been more afraid in my life. I eventually worked up the courage to get tested. When the results came back negative I’ll never forget the relief. I almost didn’t believe it because I’d gotten sick with flu like symptoms 2 weeks after me and the girl had first hooked up. There were many other factors that played into me believing I’d had it, but my doctor told me I might just be a hypochondriac, especially because a month later I insisted they test me again just in case. Negative again. Very embarrassing but I wanted to be sure! lol! Also weird coincidence, the girl who supposedly had it goes by “kat” as well lol. Pretty sure they guy who told me that was her ex and he lied. But yeah all I had drying those 5 months was my guitar, and the rooftop of the parking garage where I worked. It was all that kept me going. Don’t know where’d I’d be without it. My guitar was what woke up, and what kept me going. I would sleep with my guitar next to me so I could play it as soon as I woke up. A year later here I am, I’ve got a girlfriend with a kid on the way. She has a 2 year old already so I’m also a step dad. (I say stepdad but this is my kid yo, I love her like my own) I have band. I told my bandmates what happened to me last year, first time I’d ever told anyone other than my girl. They were so supportive it almost brought me to tears. But yeah I know what you mean. The dark cloud, the anguish, the fear. I’ll never forget that as long as I live. It made me so strong. All I had was me, and I was enough and now I’m fine. I’m sorry you’re going thru what you’re going thru with you’re condition. But I believe you will get thru it, and I’m glad you’re here sharing with the world the wonderful gift of music you have!! Kind of long sorry! Lol
wow! Thanks so much for sharing. H
About this time 7 yrs ago a dr decided I should get my prostate checked. The psa reading came back as 174. Quite hight. And this began the tortuous experience of being diagnosed with purportedly terminal illness. After biopsies and what seemed like a general Run around a Kafkaesque castle of miss assigned appointments and disconnected loss I eventually met with a consultant Oncologist who told me in the coldest and most abrupt manner what the future held.
She was very specific. 2.5 yrs with no treatment. 4 years with Hormones and 6 yrs with hormones and chemotherapy. This sort of news sent me into a swirling world of further disconnect. That evening her words sunk in and I went into shock. I new it was shock as was shaking uncomfortable and very cold. So I wrapped up warm got stoned and went to sleep. In the morning when I woke up I looked in the mirror and set my goal on surviving the 6 yrs in hope of new therapies coming in line. The cancer had spread through my Lymphatics up into chest cavity and has started to eat into one of my ribs. This is the end of year 7. Psa 1.5.
Wow. It’s an honor to read your story. Thank you so much for sharing.
Thank you Hal.
In 1981 I made a decision that changed my life entirely. My life leading to this decision bears some explanation. I was almost 40 years old, was living with my sister and niece. My father had recently passed away so my mother (who was a cancer patient) and was not expected to live much longer also came to live with us. I was the youngest child and was very immature and dependent on my mother.
Also at that time I experienced the break up of a relationship that was very meaningful to me.
I actually was emotionally ill but l did not know the extent of it at that time. I had been brought up in church and sunday school until I left home and no longer wanted anything to do with a god. I reached the total end of me and knelt beside my bed and told God that if He could do anything with my life it was now His.
My life changed drastically and positively. Not necessarily quickly and without pain but I know I have made the absolute best decision I ever made. I'm now fighting breast cancer and recovery from an addictlion. That has brought me into contact with some truly remarkable , loving people and I am very thankful for all of the things God has bought me through.
Thank you for sharing. God has blessed you and me both, Pat. Sending love, big sister. ❤️
D
you're all brave
Wow, You’ve really been through it, sister. I’m over here routing for you. Keep going.