Moving Forward: Learning to walk again for the first time - A Familiar Sting by Vern Beachy

I wonder if this is what heroin addicts feel like.

The needle tore a hole in my skin as the nurse at Mercy Hospital in Des Moines pushed it in my arm to start the drug flowing through my vein.

The sting was familiar.

I had been dealing with needles since I was first diagnosed with multiple sclerosis in September of 1998. Every medication for MS comes in the needle form, either a shot once a day, once every other day or once a week. There are differences in the meds, but they all made me feel like crap and a person couldn’t point to a specific benefit beyond; “this may slow down the progression of the disease.” I had made the comment many times that I would make a lousy IV drug user because I hate needles. Although I would assume the benefits of using something like heroin are felt immediately, whereas I just think the MS drugs suck.

How does it feel?

Alright.

Is it burning?

Nope.

It felt kind of cool actually. Not in the sense of a “Fonzie aura” but in the sense of the opposite of warm. My nurse at the infusion center adjusted the speed of the drip on the IV bag hanging on the pole next to the recliner. She wanted it to take about an hour to empty the bag. I could feel it going in but it didn’t really feel like anything. I was preparing myself for what was coming, at least from past experiences with the so-called ABC drugs for MS—Avonex, Betaseron and Copaxone—I was expecting to start feeling crappy as the minutes ticked away and the little drops of drug disappeared into my vein.

They call it flu-like symptoms. Yeah, real good. And Katrina was Hurricane-like. I was given Avonex when I was first diagnosed, and that was my choice. I didn’t know anything about the drugs for MS. Heck, I didn’t know anything about multiple sclerosis at the time and I thought I would be on a pill or something for a month or two before it was cleared up and I could go back to hiking again and training for that marathon. What’s more, I thought MS was some software company in the Pacific Northwest.

Choosing Avonex as a drug ‘therapy’ was easy, compared to the other choices I had. Avonex was taken once a week; the others were everyday or every other day affairs.

Yes, give me the once-a-week option.

Bastards.

Mild, flu-like symptoms. It wasn’t just feeling like I had the flu…it was supposed to be a MILD form of that.

Teeth-chattering, cold sweats and body aches. I was constantly on the lookout for the guy who took a baseball bat to my body while I slept. It felt like I should have bruises on every part of my body, but when I looked in the mirror I didn’t see any indication of how I was feeling. I looked like myself, no welts, no abrasions, and no bruises. But I sure felt like a Mac truck took me for a ride on its grill and that little ornamental dog was digging its heels into me.

I glanced at the clock on the wall. It was one of those school cafeteria-type clocks with a sweeping second hand. White face, black letters and it was just after 10 that morning. I wondered if I would be in lousy shape when the little hand reached the: 25 mark. From what I was told, a bad reaction would come shortly after the infusion started and by: 25, I was sure I would suck…or not suck.

It was my benchmark and honestly it was the only one I had at that point so I noticed things like a sweeping second hand on the white-faced school cafeteria-type clock.

My benchmark came and went and I was still feeling pretty good, so another benchmark popped into my mind: I came into the hospital on crutches and I thought I may—just may—walk out of here CARRYING, not using, my crutches. That would be a good thing because I was sick, absolutely sick of sitting on this MS fence any longer. It is an absolute truth that movement equals freedom. Walking impairment is one of the most common and disruptive consequences of MS.

I wanted drastic results and I didn’t really care which side of drastic the results came, I just didn’t want to hear the doctors say: “Well, we think this will help you in the future.”

Future schmuture, what about now? What about today? Just give me something I can look forward to, not more pie-in-the-sky platitudes about how this MAY slow down the progression of MS.

Not good. Well, it IS good, but it was not good ENOUGH.

I was in a “I really, really, really don’t care” kinda mood because, not six months before my wonderful wife, the love of my life, had died by her own hands and I was praying to God that He either kill me or cure me and I really, really didn’t care which. Actually, I preferred death because at least then I would be cured of this crappy, insidious disease that made me want to eat a gun on more than a few occasions, and I would be next to Melinda again. That’s all I wanted, not much, just that.

I was thinking I would have to call someone back home—an hour and a half away—to take care of my dog in case I had to spend the day, or a few, in the hospital. I didn’t have to make that call to someone; I wasn’t even sure who I would call.

How are you feeling?

Not bad.

You’re almost done the nurse told me as she checked on the flow from the IV bag on the pole.

I hadn’t tried to stand up but I was sure I would be able to do that when I got done, especially since I didn’t go the opposite way and puke my guts out or something like that. I would later get the hospital bills and they listed Tysabri as chemotherapy. I’ve seen a lot of people who had undergone chemo and their stories are not pretty: nausea, hair loss, extreme fatigue, Diarrhea, bleeding, infection, mouth sores; the whole haunted house of horrors.

I didn’t feel any of that right then so I expected to skip out of the hospital and maybe run a marathon or two before I got home that day (well, not exactly, but that was where my mind was going). I had heard several stories of people in the clinical phase of the drug that they got up out of their wheelchairs right away.

Nah.

Nope.

It didn’t happen that way.

The IV machine started beeping, indicating that the bag was empty and I was done. The nurse came back, flushed out the IV line, took my blood pressure and checked my pulse.

Still feeling alright?

Yes.

She started taking the tube out of my arm and told me I had to stay here in the chair for an hour before I was free to go. I knew about the hour wait because the doctors want to make sure a person doesn’t “freak out” or their body doesn’t go into convulsions or something like that.

It would be better if a person was in the hospital when, or if, they freaked out and not, in my case, driving down some two-lane blacktop in backwater Iowa trying to get back home after the hospital visit.

Fair enough. I grabbed the remote to the TV and tuned into some daytime crime show and not an episode of The Price is Right or whatever was airing at that time. I really didn’t pay much attention but I knew I didn’t want to watch Drew Carey talk and laugh while some freaked out fat woman tried to guess the price of a bottle of shampoo.

Homicide: Life on the Street was more my speed and I found it on a Chicago TV station. So, I tried to relax while Pembleton was man-handling some random drug dealer who may have also been a killer. Chances are that dealer was a killer; otherwise they wouldn’t spend so much time focusing on him during the episode.
Crimes are solved in an hour and I have to spend the hour relaxing so doctors can be at the ready if I freaked out…or something like that.

I didn’t go loony so the nurse cleared me as “fit to go home.” I put the recliner back to its upright position, locked the tray table, gathered my crutches lying on the floor and proceeded to get up. I push myself up using my arms because my legs are usually not up for the exertion. It was at that moment that the hope of walking out of the hospital carrying my crutches seemed to go into the “you wish” category.

I lumbered to get out of the chair. I didn’t feel any different, but I didn’t feel really crappy either. I was buzzed but I wasn’t completely drunk. Sometimes I feel like I have to explain to people who stare at me that I am not really drunk but, rather, I have multiple sclerosis. They look the same.

MS makes you feel like you are drunk all the time. I stumble around and run into walls. I drive—if I DO drive—with one hand over one eye because the double vision is fairly bad all the time and I usually want to try and determine if there are two cars heading my way or four.

It makes a difference.

In those cases I want to aim my car toward the grassy ditch and not the two or four SUV’s barreling down on me. I figure the ditch would be much better. I keep thinking of Tom Cruise in the movie Days of Thunder just before he hits the cement wall with his stock car and says “Oh, this is going to hurt.” I had one of those moments several years earlier when I was driving my Yamaha 850 Midnight Special motorcycle around Pinnacle Mountain near Little Rock, Arkansas, and some guy in a white Blazer decided, at the last minute, to turn into a driveway off of the main highway and I swerved to his left to go around him and he then turned left.

“Oh, this is going to hurt!” I thought as my highway bar cut into the side of his Chevy and opened a gash like it was a sardine can. The accident broke my right foot but I was able to limp into the cop car that later came to take me to Greenbrier, Arkansas, where I would become a guest in their jail for a few hours…something about an unpaid speeding ticket or some garbage like that. Melinda, my girlfriend at the time who would later become my wife, was convinced MS was responsible, in part, for the accident. I just thought it was because some dumb redneck didn’t feel the need to use his turn signals.

I think I was right but I also think Melinda may have had a point. It would be another three years before I decided to give up riding motorcycles altogether after realizing I couldn’t lie to myself any longer about the progression of the disease.

I hobbled out of the hospital using my crutches and into the parking lot. I didn’t feel any differently from when I opened the hospital doors two hours earlier. I wanted to feel ‘dead’ because the wound of recently losing my wife was fresh and in the ‘blister’ stage. While I wanted to be ‘dead,’ I wasn’t and didn’t feel any different. I wanted to feel different but I was continuing to straddle the MS fence.

I had to stop a few times on the way out to the car and lean up against the wall because of the extreme fatigue associated with the disease. While I take short rests, it never really seems to help much because the fatigue is much deeper than someone who is “worn out.” The fatigue sinks down to, and through, your bones.

I felt a little disappointed when I was making my way to the car. Sure, I knew in my mind that I may not see any results right away, but I was still a bit disappointed. I took comfort in the fact that the new drug didn’t kill me, but it seemed to be of little comfort.

I was still straddling that fence and I wanted a push. One way or another I wanted to be pushed into the next phase of this life, or the next one.

My double vision was still there and still annoying as I put the keys in, cranked the engine and proceeded to hit the Interstate for the drive home. I wasn’t thinking about the drug and the IV very much as I drove, I was slowly resigning myself to the fact that yet another MS drug would do little for me.

I was on Avonex for just over a year after I was diagnosed and I told my neurologist in Albuquerque: That’s it…no more. It got to a point where I would begin to prepare for my weekly injection into the leg muscles (rotate between four places so a person wouldn’t have to shove that needle into the same place but once a month) and as I opened the little, square alcohol cleaning pad I would get nauseous.

The smell of the Isopropyl alcohol made me sick to my stomach because I knew what was coming: cold night sweats, chattering teeth and that same jerk with the baseball bat would visit me sometime during the night and pound my body into submission.

My nurse told me to take two tablets of Ibuprofen before I injected the drug and the side effects wouldn’t be bad.

I think she said two pills but I quickly realized that two bottles weren’t enough. I was chomping them like Chiclets. The clinical dose for IB is 800 milligrams…each individual pill you buy over the counter is 200 milligrams. So, as a routine I take four pills right away. I don’t bother with two at first and then two more later if I am not feeling any better.

Nope.

Four pills, and THEN if I am not feeling better in about a half hour (patience is a virtue that is lost on me) I will take four more. I found out that the feet-floating-medicine-head feeling comes at about the 1600 milligram level for Ibuprofen.

From the research I have done on pills and other drugs, IB is a liver-killer…or can be. It’s a good pain-reliever and the World Health Organization has IB listed on the Essential Drugs directory.

The routine blood work I have gotten since being diagnosed with MS always comes back A-Okay, but if you see my doctor walking the streets somewhere, just don’t tell him I toy with the 1600 milligram level of Ibuprofen. I think I routinely say I take two or three pills at a time…so back me up on that.

No harm, no foul. My liver seems to be handling it so far.

The side effects of Avonex got better after a few months and I felt like I was cruising well. I was in the first year of diagnosis and that meant my nerves were on fire and would get inflamed quite a bit of the time, so “relapses” are common.

But I had five of them in that first year.

No more cruising even though I didn’t feel as crappy as I did at first.

That changed, however, at about the 9-month point.

The bad side effects got progressively worse. Another question came to my mind: Why? Why do I continue to take these shots with the long needle when all I get out of it is beaten up and chattering teeth and the attacks keep coming?

Good question.

I didn’t have the answer. Most of the time—I am assuming—people in my situation just quit taking the drugs. I wanted to wave that white flag: I surrender…just kill me now, life is not fun being saddled with a chronic disease.

My doctor then prescribed the drug called Copaxone, a shorter needle (subcutaneous as opposed to intramuscular, which means the needle doesn’t have to go in as far) but it’s an everyday affair.

Copaxone didn’t make me sick like Avonex, but the attacks continued. More questions of “So, what’s the point?” I never got the answer.

I would drive and not get real tired, at least I didn’t think so until I had to stop for gas or something to drink or use the bathroom. Using the bathroom is a frequent occurrence and I stop in the convenience stores in the little towns I pass through to use the services. When I shut the car off and get out while grabbing my crutches from the floor in the backseat I begin to realize just how tired I get from the road. I check several times to make sure I shut the car off because my body still feels like it is on the road and that “road hum” will permeate everything.

“Road hum” is very annoying because a person can’t get away from it. It is always there. In the middle of the night laying in bed that “road hum” will drive you absolutely crazy if you let it.

More ibuprofen. That seems to help…sometimes.

When I talk to other people with MS and they use the word “insidious” to describe the disease and I know in my mind they are talking about “road hum.” That is what I call it. Another good word that elicits nods from those with the disease is “buzzing.” You can always add “burning” to that as well. I could shove my hands in a snow bank and the snow would sizzle and melt because my hands are burning up. Someone struck a match and thinks it is neat to hold it under my hands and feet.

It’s not.

Trust me…it is “insidious.” If you have MS and are reading this I can almost see your head nod in agreement.

I stopped at a convenience store, hobbled to the back where the restroom are located, did my business and walked back to the car. I really wasn’t interested in making a purchase even though I was sort of thirsty, I just wanted to get home and sink into my Queen-sized bed and drift off for a few hours. After a nap I may—MAY—feel decent enough to go out and grab a bite to eat.

But, then again, maybe not.

It depends. It always depends. On what? That’s another good question and if you know the answer I would like to be informed. There are, however, two things that will almost always force me to cry uncle; stress and heat. It wasn’t hot, in fact it was November in Iowa, but that stress thing was a killer. When I began taking Tysabri I was at the most disabled I had ever been.

Stress.

A four-letter word.
2006 has started somewhat decently for me, but I quickly had several MS relapses and in June my wife passed away by suicide.

Oh, buddy.

I could write more about that, and I did, in a book entitled “A Tear-Stained Letter.” In this instance, however, the words “Oh, buddy” sort of says it all and puts it in a nutshell, so to speak. Any words beyond “buddy” would be pointless and wouldn’t work to enhance or underline how I felt.

“Oh, buddy” is a mouthful.

It drips with despair and I was dripping. Some may say I still am.

And I still couldn’t walk. Another drug that gives only superfluous hope.

Or so I continued to think. I was wrong, but it would be another two months before I found out how wrong I was.