To those of you who read my friend, George Kouri’s article What Life is like with a Severe Disability, this is another version of what could’ve been his life had situations been different. This is my life experience as a person with a chronic disability. Some of you might’ve read my first AC article, Duchene’s Muscular Dystrophy – A Case Study and Clinical Synopsis, but that is mainly a scientific study of my disability and a rather dry read that many of you won’t be patient enough to get through. This article here will be a personal account. I planned on an article such as this and discussed it with George briefly back when I first told George about AC but just never got to it. I have been busy with my own horror site for the disabled, Wheels of Terror (wheelsofterror.com – yes, this is a plug), which George and I began in 2004 (he writes reviews, helped with or slogan “We Put the DIS in DISmemberment” and helps promote us). I will write more about the site in a future article. Back to the meat of the subject.
My disability is Duchene’s Muscular Dystrophy, which differs from George’s disability. There are forty types of muscular dystrophy with different conditions, onsets and mortality rates. Duchene’s is considered the most severe type but that isn’t to say George’s or others’ types of muscular dystrophy aren’t as bad; it’s just that more people with my disability have learning disabilities (near 60 percent) and nearly 90 percent of us die around age 20.
Duchene’s is a progressive disability which means that it gets continuously worse, like in stages. Each stage is a new plateau of severity which is the most irritating and painful aspect. Just when I become accustomed to the current level of severity and its associated problems, BAM! it gets even worse and I’m even more limited to do things able-bodied, or as I like to refer to as “walkers”, people, and even my last level of limitations, take for granted.
I’ll just take my life chronologically as it’s the easiest way to see the evolution of my disability, which is unlike most other disabilities.
I was born on November 12, 1975. My parents had already separated but hadn’t signed the divorce papers yet. I have never met my father and he was mostly out of my mother’s life by then. She had worked in the restaurant industry as a short-order cook throughout her nine month pregnancy because my father didn’t help her out financially at all. She had to give a deposit to the hospital and make payments for the doctor’s fees before, during and after my birth.
I need to go off on a tangent now. My mother has a learning disability, attended special education classes and never graduated high school. She quit school at 15 to work. She can read, perform basic math and write so she can lead a normal life on her own. Now, my father’s a totally different story. Being in special education classes in school, my mother had self-esteem issues and didn’t believe she could find a “better” man so she married my father in 1972 at the age of 23. My father attended special education classes as well (not alongside my mother). He cannot read, write (except his name) and cannot do math whatsoever. I know it’s no reason to dislike him but to top it off, he didn’t help with child support at all. The courts put him in jail for a while and child support was taken out of his earnings and later out of his social security checks which I still receive today.
Back to my birth. I was born in 1975 when my mother was 26. Her high blood pressure caused complications and she wouldn’t dilate so she needed a C-section. She almost died and the doctor told that she shouldn’t have another baby. After a few days of recovery, she returned to work and my grandmother and uncle babysat me.
I was born a healthy baby without any noticeable complications. I even surpassed expectations by walking at seven months old. I’ve heard that I started dancing to music at nine months old; that’s an “AWWW!” moment.
I was tested for kindergarten at age 4 and passed but it was thought best I not enter kindergarten due to my smaller size. I entered at age 5.
The first signs of my disability occurred a few months into my kindergarten attendance when I sprained my ankle and it took four months to recover. I was taken to an orthopedic doctor at age 5 and was told that I had coordination and muscle problems. I got a biopsy on my right leg at age 6 and it was determined to be Duchene’s Muscular Dystrophy.
I started having trouble walking and by age 7 I required a wheelchair. I was transferred to a school with better accommodations for disabled students and physical therapy while keeping me mainstreamed. I didn’t take the changes well, no one ever talked to me about the changes I’d undergo (my mother and family didn’t know either and so I didn’t do well in school (a few B’s, several C’s and a few D’s).
I manually maneuvered my wheelchair until age 9 and needed a motorized chair which wasn’t good because we lived in an apartment with eight steps. So the motorized chair was left at school, to which I’d transfer from my manual chair.
My grades had been mediocre and worse. Teachers and my family let it go. That is until fifth grade, when I had a very strict teacher, Ms. Era, who acted more like a drill sergeant and students feared her. She seemed to single me out and yelled at me to do better. After about five months of her constant scolding and tough love, I finally started doing better. But B’s weren’t enough, she wanted A’s. By the end of the year, I was getting A’s and tested and passed for A-level math in sixth grade. This began my extreme focus on academics and grades. It was almost an obsession and it’s all I thought about.
In sixth grade, I began having problems lifting my arms in class or for other things such as putting the key in the elevator. I endured my physical limitations. My grades kept up and I was on the honor roll all throughout middle school, high school and dean’s list in college.
By high school, I could no long lift my arms at all but that’s about the only new progression of my disability for a few years to come. Nothing changed but I had a few fits of coughing at the end of my high school senior year but I thought nothing of it although I should’ve for use in a few years in the future.
My grandmother passed away in 1993, my senior year. She had cancer. It hit us hard. Now it was just me, my mother and uncle.
My only concern was my grades and I didn’t notice girls really or, if I did, I never acted on it because I was too shy. A girl flirted with me in tenth grade but I pushed her advances away. Another girl, who was disabled and had known me since third grade, flirted with me, especially our senior year, but I again ignored her advances and she was too shy to bluntly ask me out. I recently found out that I was her first crush. I was stupid not to notice!
After graduation, I and three disabled friends, including the girl who liked me, my best friend who was visually impaired and had a crush on her (weird love triangle!) and the girl’s friend in a wheelchair, went out to the mall to spend gift certificates given to us by the aides from school as our graduation presents.
As we shopped, eventually we split up and my best friend went with the girl in the wheelchair to the record store, while I went with the other girl to the book store. While together,she pointed out some sex books as a hint. (By the way, as a graduation gift, her best friend gave me a box of condoms! I thought it just a joke gift and didn’t take the hint that it was for me and her friend.) Now, right there among the book stacks, we shared our first kiss. It was sweet and neither of us will ever forget it.
I and the girl shared a few more special and tender moments together but never had enough privacy to be truly intimate. After a few months into our freshman year of college (I in our hometown and, for bad memories that I can’t go into, she in New England), we went to the mall together, kissed a little and I gave her poetry. I was in love with her and, soon after, I told her so in a hand-written letter and asked her out as my girlfriend. She responded and said that she was sorry but had to refuse because she had a boyfriend in New England. I was devastated but moved on with my life. We remain friends to this day.
My college grades were great with my accounting degree and later switched to finance. Everything was going well until October, 1996. I collected comic books and would pick up my subscriptions at the store on my days without classes.
On this particular day, my mom and I went to the store and I got an order of hot chili to go at a good steakhouse there. I had taken Fibercon that morning which affects my story soon.
We got home, I read a few comics and ate the chili which made my nose run. At around 10 PM a coughing fit began and wouldn’t stop. At 11:35 PM with a Seinfeld re-run on TV, I rushed to bed to rest and try to cough better. Once in bed, the coughing wouldn’t end. It got worse and worse. My mom and uncle changed my position repeatedly but nothing helped.
Suddenly, my throat and airways were completely blocked by a mucus plug (it was brought on by congestion from my nose running and expansion of the Fibercon into my esophagus) and my lungs were too weak to cough it up. I blacked out.
I later found out that my mother performed CPR, which she wasn’t trained to do, called 911 and ran to neighbors, one of which was a nurse for help. No one answered and my family panicked.
I woke up to a policeman and EMT who gave me oxygen. I was taken to the hospital emergency room. I stayed in for about a week. I was sent home with a nebulizer (a machine which sprays a medicinal mist into the lungs) to help with the congestion, a suction machine for the congestion, a bi-pap (like a ventilator) and orders to get a coffolator (a machine with a mask which shoots a blast of air a into the lungs to help cough).
I took two semesters off from college to recover. This was a new stage of progression: difficulty breathing and more back pain from my scoliosis, which caused my spine to curve into my left lung causing a 70 percent decrease in lung capacity in it.
I refused to use the bi-pap because it felt weird and seemed like giving up. I used the nebulizer at first but the induced coughing from the mist was too much to handle. My mom repeatedly called my respiratory doctor for help, to which he repeatedly responded by saying to continue the mist, that I just have to suffer and eventually that she was harassing him!
I quit the nebulizer; the suction machine just gagged me. Six months later, after daily coughing fits and difficulty eating, I started using the bi-pap at night.
My insurance didn’t cover the coffolator but I e-mailed a coffolator manufacturer and they donated an older model to me for free! My medical supply company showed us how to work it. After a few months, a big shot at the medical supply company harassed us rudely to give the coffolator to them for other patients; yes, so they could rent it out! We refused because I might need it, I did ALL of the work to obtain it and their rudeness.
The bi-pap at night helped me to stop coughing as much but they wanted me on a ventilator which I tried but I set the alarms off too much by breathing against it (I need deeper breathes, not full respiration.
In the spring of 1997, I returned to college but, after a few weeks, due to needing help with positioning because of my pain, my mother started attending classes with me. I graduated magna cum laude in 2000 with a BA degree in finance.
Since graduation I’ve been unable to find a job in finance or any field. I’ve tried everywhere for years but nothing ever worked out. It hurts because I want to work but can’t work onsite and every at-home opportunity is either a scam, requires that I work onsite at first or have experience. For the past few years I’ve given up actively searching for work and just sell online to supplement my disability income.
I’ve still never met a woman for a relationship other than the disabled girl I mentioned but, even she wasn’t really a girlfriend. I’ve met several women online (three local) but for one reason or another (distance, want to just be friends, etc.) it has never worked out. I will write more about this in another article.
In 2001, I met a local 19 year old girl online and we became close and I asked her out. She stood me up three times and after the last time, she had gone out with a 33 year old man, whom we both knew, as friends and ended up moving in with him! I later found out that she had family problems and I was unable to help her get away so she went with him because he could help.
Anyway, after two days of crying about her, I had what I thought to be severe heartburn for three days. The pain worsened so we had to call 911. It turns out my left lung collapsed! I spent three weeks in the hospital and returned home right before Christmas.
A few progressions of my disability have occurred in the past few years. I lost the ability to control my motorized chair. I’ve lost the ability to use my hands to write. The worst progression is that I now need to use my bi-pap 24/7 which I hate because I feel the disability has won.
We had a scare in September 2005 at 2 AM, when the power went out for about six hours. Our cordless phone went out (we had no standard or cell phone) and I had no battery backup for my bi-pap. Luckily, I was up in my chair and hadn’t eaten so my breathing was as good as it could be. My mother ran out to the neighbors to call 911. We were all panicking to get me help. After twenty minutes, we finally got a phone and called 911. My uncle got me down the steps and another twenty minutes until the ambulance arrived. By that time, I was struggling to breathe. I spent a few hours in the eergency room to use their power. I found out that a drunk driver had crashed in a power line pole.
Since that power outage I’ve prepared for it if it occurs again. I have two battery backups, two phones (one standard), a rechargeable lantern, a rechargeable flashlight and tons more. I love redundancies!
Well, that’s a quick rundown of my life with a severe disability. I’ve lived a sheltered life with my family which some might think “weak” but, without anyone else, it’s either this or a nursing home. I love my family and they help me tremendously but wish things were different. It’s tough to appreciate the love of relatives as much as strangers because they’re “supposed” to love you (usually). I’ve friends who love me as friends but nothing more. Sometimes I wish it’d end, other times I fight for it not to. Life as John Gugie isn’t fun and is a struggle every day but I never quit.