Published Book or Work by:
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My Own Prison
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| Published by Albuquerque Journal |
| November 2000 |
| First person summary of how life has changed after diagnosis of chronic disease.
By
© 2002 Vern R. Beachy
The words that rolled off his tongue like a silk stocking should’ve hit me like a ton of bricks, but they did not. I didn’t exactly know what to think, but I knew my lack of knowledge had everything to do with it.
I knew what the letters stood for, but I didn’t know what they meant. I didn’t have a clue and it would be some time before I actually understood the meaning of multiple sclerosis. Then again, who could possibly understand the meaning of MS?
Certainly not me.
Certainly not the people who I later met in a support group.
Certainly not my friends and
Certainly not my family.
“No answers” would be two words with which I would become intimate.
That’s okay for some things, but it just doesn’t seem adequate in this case, especially when TV shows refer to someone with MS as having a fatal disease. It’s not a fatal disease Everyone has to die: I just may go a little bit sooner than most.
That’s all.
That’s it.
I guess that is better than being alone at the end of a long life. But, then again, give me a long life with the ability to run, to feel something besides numbness, to have a steady hand, to have the luxury of parking in the spot farthest away from the mall doors and enjoying the walk to the entrance, to have the luxury of climbing my mountain. It’s the little things that matter.
A few people (those that know me well) ask what it’s like. I am stumped to provide an answer because it is hard to describe. No, scratch that, it is IMPOSSIBLE to describe. Oh sure, you can use metaphors to give them an understanding, but it’s only cursory and doesn’t (can’t) hit the depths of what a person with MS endures everyday. The disease offends me, but questions about it do not. Sometimes you feel that talking about it will help, and other times you want to push it out of your mind because you find yourself complaining constantly. Nobody likes a whiner.
But it never goes away. You have a life sentence and many times you want to hurry up and finish it. Then, reality hits you in the face: you see someone in constant pain from other problems or diseases and think to yourself that the situation could be worse.
Much worse.
There is very little pain associated with MS (at least in my case, but every person is different), which is a good thing because I don’t think I would have the strength, physically, to deal with pain. The fatigue associated with your body constantly fighting the misfiring nerves is something that sinks down to, and through, your bones. I used to hike constantly. An 18-mile trek up the mountain was a good start to a nice weekend, and I made the hike quite often. Now, washing my car will exhaust me to the point where I have to lie down for a few hours.
Besides “what’s it like?” the other common question I get asked is “when did you know?” I have to chuckle a little bit at that because it is a funny story in a twisted sort of way.
I was training for a marathon.
Yep, within a span of six months I went from the best shape I had been in my life to a state of inability and disability that continues to go downhill. The marathon is the one that is held every December in Hawaii. I was about to begin daily workout sessions with a trainer sponsored by the Easter Seal’s Society. It was something I knew would be a challenge and it was for a good cause: raise enough money through donations and the group will spring for your trip and your personal trainer. I had to supply the effort, but that was a challenge that I wanted to take head-on. I had been living in Albuquerque for about 2 years and had been staring at the 11,000-foot mountain that loomed on the eastern side of the city and thought, one day, I will climb that hill.
I did. Several times.
I had become quite an avid hiker and my dog, Courtney, was my constant companion. I had even joined a hiking club and met some fascinating people that took the sport seriously, but in a fun way. La Luz was the ultimate challenge for hikers. 18 miles up and back. A grueling, but wonderfully beautiful trail. I tried it, succeeded, and wanted more. I kept going back. I was having fun. I asked myself why I didn’t start this sort of activity much sooner in life and not wait until I was in my mid 30s.
I didn’t have the answer.
A woman named Jennifer was my contact point at Easter Seals and I was planning on doing a series of stories about the whole experience to be broadcast on the radio station where I was news director. I was anxious and serious about the adventure. My mind was ready and my body was quickly getting there. My routine included early morning workouts at the gym and daily, two-mile hikes in the evening with Courtney. As a pug, she wasn’t one for intense and fast hikes. Her little legs worked three times as hard as mine, but she was having fun exploring and she would push me to keep going. Sometimes at the end of a long day I just wanted to crash out on the couch and take it easy. But, her deep, brown, soulful-looking eyes kept my head in the game and we rarely missed our daily jaunts in the foothills.
But it was time to start thinking about running and not just hiking. I knew they were totally different sports, both in mind and body. I had never been much of a runner. But, then again, I had never climbed an 11,000-foot mountain until six months earlier.
It was an early Saturday morning and I walked to the arroyo near my home that leads to the foot of the mountains. I was alone. The sun was barely up and the breeze was light and cool. Perfect. I was all stretched and ready to go, to begin my journey that would end later that year in Hawaii.
I ran for about a half of a block and stopped.
I felt like I was going to fall down when I was jogging at a comfortable pace. I felt like I had run the marathon already and was bracing for a much needed rest. I looked behind me and had barely passed the bridge. Not even a block. I had better get that trainer in a hurry if I am going to eventually go 26 miles. I had better get cooking because I must be in lousy shape.
I was not. I was lean and healthy. I knew the endurance was there, just look at that mountain and tell me it doesn’t require endurance to scale its height.
I didn’t have endurance that day. I didn’t know it then, but I lost my endurance the day before and have yet to get it back.
I never called the Easter Seals Society to line up a trainer. They faxed me some more information a few days later, but I never replied. I never did any marathon stories from Hawaii.
But I did meet Jennifer again.
I left work early that day so I could make an appointment with my doctor. In the back of my mind I knew I had let it go too long. Most people would’ve opted for the ER instead of waiting for a few hours to see a doc, but I figured what are a few more hours?
“You didn’t have a stroke,” the doctor said, as he sat across from me in the small but sterile examining room not quite 15 minutes after he gave me the ‘once-over.’ I honestly thought I had suffered a stroke. The right side of my face was tight and distorted, I was seeing double, but the strange thing was: I had lost my sense of taste. It felt like I had burned my tongue, except without the pain. And I was unsure of myself when I walked, my balance was questionable.
“You may have MS but I want you to see a neurologist to confirm my diagnosis.” Like I said, those words rolled off my shoulder and I shrugged them off because I lacked the knowledge. I had heard about MS before, but no one I knew had the disease, so, therefore I wasn’t affected.
Until now.
The trip to the neurologist the next day was short and sweet. 30 minutes for the MRI, five minutes with the doc, a lifetime of changes.
My MRI looked like my brain was engulfed in snow-covered slopes. The white spots, he explained, were scars. Damaged areas of nerve. Do I want a daily or weekly shot to slow it down?
What?
At that point I was still struggling with not being able to run and the doctor was asking me if I wanted to inject myself once a day or once a week. There is no cure and there are no guarantees. There are just 3 drugs on the market for MS and they are only designed to slow down the progression. The damage that is done cannot be reversed.
I took the once a week option (who wouldn’t?) and walked out of his office a few minutes later with a video from the drug company showing me how to mix the drug, inject it and a booklet on MS.
And a lot of questions.
The benchmark for the first drug I was on, Avonex, is minimizing the attacks to once every two years. I had five in less than a year and the shot made me sick for two days each week. I would take it on Friday so as not to miss work from being sick, but my weekends sucked. When I officially “failed” on Avonex, my insurance company agreed to pay for the daily shot of Copaxone. Shorter needle, but an everyday affair. It’s not just a shot either. Other medications in the pill form come with the disease. A person becomes a virtual walking pharmacy. Every day you think you want to take a ‘drug holiday’ because the effectiveness of the shots and the pills are in doubt. You ask yourself ‘so why do you take them?’ Good question. Sometimes you don’t.
If you believe the hype, there is a cure for MS around every corner in a seedy bodega that caters to the alternative med set. Well-meaning friends and relatives spurt forth-anecdotal evidence that brings people out of wheelchairs and allows them to discard their canes. “I know a guy who says he has a cure for MS.” (Really? Why is he keeping that valuable little secret to himself? He could be a gazillionaire). “Pour this stuff in your bath for a few weeks and the MS will go away.” (No kidding? Wow, cool. Let me try that little trick, it’s bound to make my life much easier).
Nah. Been there, done that. Doesn’t work. Wish it did, but it doesn’t.
The bottom line for those claims is that they come from people who do not have a medical degree to back them up. I don’t mean to dis the alternative medicine folks who work to cure what ails you, but it doesn’t work. Not ironically, the “cure for MS” comes from those who do not have the disease.
Nowhere in the book of life is an instruction sheet on how to deal with a chronic disease. You take one day at a time. You learn to deal with limitations. You learn to deal with the ever-changing face of those limitations. Stone cold sober I could NEVER pass a field sobriety test. Every neurologist I have seen over the past 2 years (and there have been many) give me the test as a way to determine the level of disability or progression. I fail it before it even starts.
That heel-to-toe thing is a killer.
The finger-to-nose test usually ends up in my eye.
Standing still on one foot is something I used to do in the past.
It’s all in the past.
I placed a phone call to the local chapter of the National Multiple Sclerosis Society a few months after my diagnosis. I wanted to learn a few things. I wanted to talk with people who had the disease. I wanted to learn more, but not TOO much more. I did NOT want to hang around support groups with people who are in much more advanced stages of the disease than I.
I didn’t want the reminder.
Yes, I know what my body will eventually look like years down the road. But, just like the “fatal disease” comment, I didn’t need to be reminded.
The phone call brought out the irony of my contact with Jennifer months earlier. She was the Director of the Rio Grande Division of the National MS Society. The last time I had spoken with her I was interested in lining up a marathon trainer for the challenge in Hawaii.
She had since changed jobs.
I had since changed my life.
Jennifer recognized my name and my voice (I get the voice recognition thing all the time because of my years in radio). We laughed at the irony. We had to. I couldn’t script that coincidence in any short fiction story that I could, or would, write. It wouldn’t be believable, brushed off as too coincidental. Even though all fiction is based on a pack of lies, it has to be based somewhat in fact in order to be embraced by the reader.
Life becomes a myopic view of time, much like B.D. and A.D. Before Diagnosis and After Diagnosis. It’s the same for anyone who has endured any sort of trauma, such as a car accident or other paralyzing event. The B.D. part gradually fades with each passing day but never, ever, goes completely away.
I don’t want or seek sympathy. Nope. Leave that for someone who really needs it or wants it. This guy doesn’t. A friend once said that he was uncomfortable telling me about his recent trip to Europe. I didn’t tell him this, but that remark offended me. No one should apologize for being able to live his or her life. I live my life, it just happens to be different than most.
That’s ok. No hard feelings here. I live vicariously through those with ‘normal’ lives, those who do not rely on canes or wheelchairs, those who get up each morning and don’t wonder whether they are going to be able to walk to the bathroom or keep hold of that coffee cup as you lift it to your lips. I live vicariously through those who do not have a blue and white Crip placard hanging from the mirror in their car. I know it is not PC to call people with handicaps “Crips,” but I can do that. Humor is not lost on those with handicaps.
I saw a shirt one time that bore a rather funny (in my mind) slogan: “I’m not drunk, I have MS.”
I am looking for that humor. I promise to keep it up as long as you do the same.
We have to laugh. Don’t take that away.
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| Autobiography
, General
, Health/Medicine
, Humor
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