I wrote this back in 2017 for my Creative Writing class while taking online college courses, an adventure in itself! The assignment was to craft a personal, non-fiction yet creative essay about a life experience. I poured my heart into it and was thrilled to receive a 98 out of 100. This piece holds a special place in my heart, and I hope to expand on it someday. Who knows? It might even become the preface to my first book about living with disability and Fibromyalgia.
⚠️ Trigger Warnings: Disablity, Medial Trauma, Near Death in Childhood, Birth, Surgeries, Severe Depression, Anxiety, Mental Health Challenges
These puke brown, almost but not quite shag carpet covered stairs are my enemy; every journey up or down them is a perilous battle where I risk life and limb. The stairs won this one. My lanky, five foot ten body meets the stairs and top landing in a hard, ungraceful crash. My right knee slams into the edge of the top stair as my hands, elbows, and face kiss the carpet, as I fall up the stairs, again. Lying on the second floor landing, I start to laugh through my tears. “God F-ing damnit! Not again…” I curse as a myriad of pains shoots through my body. Most people would be sore but go on with their day, not me; it’s off to bed for me. I’ll likely be bedridden for two or three days, have to up my morning and night pain pill dosages, and I'll be covered in a lovely assortment of bruises for weeks. This is all thanks to Fibromyalgia.
I’ve never been someone who can take good health for granted; my health challenges began the moment I was born. I was clinically dead when I was delivered via C-section. I’m told I was a terrifying shade of blue, so terrifying that there are no hospital birth photos. Five months later my parents found me blue, not breathing, and dead in my crib. My father began CPR on my lifeless body as they rushed to the hospital. Just two blocks from the hospital, the car stalled in the slushy, freezing snow, so my father ran the rest of the way while still trying to breathe life into me. I survived Sudden Infant Death Syndrome thanks to my parents’ hope that they could save me and the team of doctors and nurses that resuscitated me. The doctors never figured out how I survived, even after a liver biopsy and two years of medical study at the Children’s Hospital every Saturday. Surviving death twice was just the start of my relationship with being ill, though so far, I think I’m in the lead.
Being sick was something I got very good at in my childhood. Every school year I used up the maximum allowed sick days; some years, I went well over. I had severe asthma and allergies, caught every cold, flu, and virus that went around, and was so clumsy that I probably should have been put in a bubble for my own protection. Reflecting on my childhood sickness, I remember two things clearly: the enjoyable sick days at home, where I lay on a lounger in front of the television and was spoiled by my parents, and the terrifying days in the hospital where I fought to breathe. I give my parents a lot of credit for making sure I didn’t feel like a “sick kid”. They taught me to approach each day with a positive outlook. I still went camping, fishing, hiking, horseback riding, white water rafting, and I attended summer camp every year from the 3rd grade until I graduated high school. We just had to prepare more and take extra precautions. The theme of being ill has always been a part of my life. My asthma and allergies improved as I reached adulthood, but other things took their place.
My neurosurgeon thinks my Fibromyalgia might have been triggered by a series of surgeries I had from 2007 to 2009. During that time, I had five surgeries. The first was a carpal tunnel release in my left hand, which was exciting because I got to be awake for it and I got a great pair of pink fuzzy socks with non-slip pads out of the deal. I vividly remember lying on the operating table. The air in the room was so cold it gave me goosebumps; I was covered with heavy, itchy blankets, and a metallic clean smell filled the space. There was a metal topped table with tools laid out, making it look more like a torture dungeon than an operating room. As a nurse put a painful tourniquet on my left arm, I asked excitedly, “Doctor, since I’m awake, can I watch what you’re doing?” He gave me a deadpan look as he stuck a giant needle into my palm to inject local anesthesia, roughly massaging the fluid under my skin. “No,” he said flatly, pulling a drape in front of him. When he did the same surgery on my right hand, I asked again, but got the same answer.
My hand surgeon may not have the best bedside manner, but he was the one who found my macroadenoma pituitary tumor. Learning I had a tumor pressing on my optic nerves, and that it was a threat to my vision, was terrifying. "This is it. This is going to kill me. If it doesn’t, I’ll wake up blind. I’m only 34, and I’m going to die. I don’t want to die. I’m not ready." I never said I wasn’t dramatic...I did four years in high school drama club, I have a diploma in overreacting. On April 8, 2008, a benign tumor was removed through my nose in a three and a half-hour surgery. The surgery was supposed to be a simple, 45 minute routine procedure. But, like most things in my life, it turned out to be anything but. Waking up from that surgery was the worst pain I’d ever felt: both nostrils packed, my skull felt like it would crack open, my lips cracked, and even opening my eyes caused stabbing pain. Despite the pain, the experience at Saint Joseph’s Hospital was wonderful and taught me a lot about myself. After four days in ICU, I decided to approach future health challenges with a positive attitude. If something as scary as a tumor could turn out okay, I could handle anything else. Right?
My last two surgeries were carpal tunnel release again on both hands, along with cubital tunnel release, which left cool Frankenstein-like scars on my elbows. I now have five pairs of nice fuzzy socks! By February 2010, I had recovered from all the surgeries and things at work returned to normal, no more short term leave or working half days as I recovered from my many surgeries. I was filled with excitement. I had dedicated fourteen years to the same company, with a long term goal of advancing into a leadership role and ultimately retiring there. But I knew something was wrong when I started falling asleep at my desk and running off to the restroom crying whenever I was asked a question. I loved being an IT Project Manager; it defined me professionally and personally. I always said “yes” to challenging projects or difficult clients; I thrived on tight deadlines and mounting stress, but not anymore.
By May 2010, I could no longer ignore my symptoms, my struggles to wake up and get out of the bed, the all consuming exhaustion, head to toe aches that moved and changed all day long, the brain 'fog' that made thinking feel impossible, and the emotional breakdowns when facing stress or challenges. I was diagnosed with severe Fibromyalgia after blood tests, an X-ray, and a thorough exam of being poked, prodded, moved, and questioned. I didn’t know it then, but this was the start of a physical, mental, and emotional roller coaster. I went on short term leave to keep my job while my doctor tried various medications, diets, and supplements to control my symptoms. The side effects were worse than the Fibromyalgia. I experienced a zombie like state, changes in appetite, dulled senses, blurred vision, slurred speech, crippling depression, mood swings, violent vomiting, hot and cold flashes, sleeplessness, and if left to my own devices, I could sleep up to 20 hours a day. I wasn’t living, only existing, but I hoped one of the medications would let me return to work and live a somewhat normal life.
We thought Lyrica was the solution; after a month on it, I returned to work part time. I still had moments where I had to hide in the women’s restroom because of overwhelming questions or take mini naps at my desk, but at least I was working. It only lasted a month before I could no longer see well enough to avoid obstacles while driving, speak clearly, or sit for four hours. The side effects and risks became to much and I had to stop taking it and at that time, I used all of my Short Term Leave, so I either had to return to work full time or go on LTD. I couldn't return to work no matter how desperately I wanted to, I loved my job, my team, and I saw my future there. Going on long term disability shattered me; I lost hope of returning to my career, or any career, and I felt worthless. Those days blur together in a haze of pain, self loathing, a medicated zombie state, and a depression I thought I’d never escape. My depression felt like a smothering blanket, enveloping me in darkness. I don’t know how my partner tolerated me then; I was reduced to a helpless, sad child.
It’s been six long years since my journey with Fibromyalgia and disability began. Chronic pain affects every part of your life; you can’t escape it, and nothing prepares you for it. Sitting here in my adjustable medical bed (a gift from my father) with a Ziploc bag of medications on my lap, I still see my depression blanket folded at the foot of the bed. We stare at each other often, and I wonder when it’ll creep over and smother me again. It might be tomorrow or a week from now, but I’ll be ready. I’ve learned my number one weapon against it is hope. I hope that each day will be a bit better, that I’ll accomplish more, finish college assignments, or feel up to working on some art. I hope through the pain and depression. I hold on to memories of good days, knowing I’ll have many more of them.
I created this ribbon a few years ago
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