THE STORY OF MY LIFE’S NEMESIS… MULTIPLE SCLEROSIS
Yes, you’re right. It is unusual. Who begins their story with an apology? What’s that about?
Well, I’ve written two books. The first was my memoirs. The second was all that I forgot to include in the first. So before you conclude me to be a perfect narcissist, I apologize for writing about myself, again.
This time, however, the slant is different. I write with the hope that the story of my own battle with Multiple Sclerosis might offer someone out there a better understanding of the plight that affects more than a million Americans. I don’t expect to reach a million people, but if I can help but one individual to cushion their path, to answer a question or offer a helpful perspective, it will have been worth the effort. So, here goes…
If you are newly diagnosed, think of your disease not as a sickness, but a challenge. Your attitude toward it means everything. What should you expect going forward? Do know that everyone’s experience varies. I can only tell you of mine, but one of the remarkable things about MS is that all cases are different. Maybe the same, but different.
Those lucky enough to have MS need to realize that this is a condition that can be lived with. Sure, it’s a gut punch to get the diagnosis. Sure, it profoundly complicates the victim’s life, but it’s not the end of the world. In fact, I hesitate to even use the word “victim”. Who is not a victim of one thing or another in life? Who hasn’t ever been stung by a bee? Fallen off their bike? Been in an auto accident?
Believe me, there’re many diseases out there that are devastating. I have relapsing/remitting MS. I got off easy .
In retrospect, it should have come as no surprise. Neurological diseases are no stranger to my family and, indeed, the apple doesn’t fall far from the tree. Dad passed with complications of Parkinson’s Disease. Mom was steeped in Alzheimer’s. second cousin Gretchen battled ALS for six years.
You see, it was just something I woke up with. Who knew what it was? I sure as hell didn’t. At least it wasn’t painful. Speaking of painful, you might be under the impression that if you were to whack your ankle with a sledge hammer, there would be resulting pain, right? Not so that morning.
It was 1982. Yes, nearly 40 years ago. First thing one morning, without prior notification, my legs from the knees down, were completely numb. No, I didn’t hammer my ankle. I didn’t need to make the numb point that badly, but the phenomenon sure was alarming.
How abruptly the condition had beset me. It made no sense. What was this?
Do realize that I was one of those clueless, invincible young men who really didn’t need to see a doctor. After all, the only oddity was that my legs were numb. This too would pass, I reckoned.
Turns out, it did. The numbness went away. I never went to the doctor. Did I really need a doctor to tell me that whatever it was would go away? Of course, it would. I was clueless as to what was happening. I think the condition is called “ young and stupid.”
After a few months, another oddity reared its ugly head. Suddenly my left eye was agitated. Vision was blurred. The eye itched and was sore. As with numb legs, I had no clue about this.
This time I resolved to visit an optometrist. He had a dismal bedside manner, but knew his business. He referred to my condition as Optic Neuritis. A litany of tests yielded nothing more than that diagnosis. This would go away, the doctor said. At least he said it, not me. There was nothing he could do.
I was nearly out the door, when the last stroke of his pen yielded a script for an MRI . He wanted to count out the possibility of Multiple Sclerosis which, unbeknownst to me, was often preceded by Optic Neuritis.
Indeed, there had been signs. In the early days I just thought that I was being a little too careless. One day I backed the car into the garage door. It was easy to accept that. The door was in disrepair, anyway. The car was un-injured.
While filling potholes in the lane, I rammed the front-end loader into a tree. That bent the frame of the loader, requiring a repair bill to the local welder. Were either of these events precursors of my disease? Who knew ? I wasn’t even questioning that yet.
So, I made the appointment. An MRI, if you’ve ever had one, is accompanied by a hideous cacophony of bells and whistles while the patient hunkers in a tiny, claustrophobic chamber, motionless. Despite the sound effects, the MRI revealed the needed answers about my condition.
Lesions on my brain, lesions on my spine. It was the first time I’d ever heard the term Relapsing/Remitting MS when I sat before the initial Neurologist discussing the results.
Damn it . That’ll teach me to go to a doctor! Since then, I’ve seen more doctors than I care to even think about. Still do, but that comes with the territory.
The first Neurologist couldn’t do much for me, anyway. He indicated that until there were viable drug therapies available, a visit to him would amount to little more than a social visit. Great, I thought to myself. These neurologists are hard partiers. I had always wanted to hang out with one!
Many times since then, I have observed others with Progressive MS. Sure as you’re reading these words, I got the better end of the MS deal! Progressive MS is not a picnic. I wish there was a milder way to put it.
Many years since that initial MRI, therapies have improved. A cure is still being sought. Meanwhile, MS medicines seek only to “slow the progression” of the disease. A cure would be a whole other matter.
I do wish they’d hurry up, though. What would a “cure” look like in my case? Isn’t the damage already done? A “cure” would mean a reversal, a repair of very complicated deterioration of nerves that has already taken place. What is the likelihood of that? Not great. I guess I’m permanently damaged goods.
MANY QUESTIONS, CONFUSING ANSWERS
What is Multiple Sclerosis, anyway ?
The human body is quite the electrical device. Thousands upon thousands of electrical impulses are transmitted at any given moment throughout the body via the body’s “wiring”, that is to say its nerves.
Have you ever observed telephone wires that stretch outside along the road from pole to pole? What do all of these wires have in common? Each and every one is coated with a sort of sheath called insulation. What would happen if these wires weren’t insulated? What would happen if one touched the other and wasn’t insulated? Nothing good! There would be sparks and short circuits everywhere. Nothing would work. Pull the fire alarm. You’ve got problems!
Each of the body’s nerves are insulated, too. They must be. Remember, they are transmitIng electrical signals from the brain to whichever part of the body. The nerve’s insulation is called myelin. In a nutshell, Multiple Sclerosis is the deterioration of myelin. Does that cause short circuits in the body? The answer to that question would be… “Welcome to my world !”
Don’t worry. I self-relinquished my driver’s license years ago. One little erratic, involuntary movement caused by a “short” in the body could easily cause an accident. It is a very real possibility.
O.K. I had this diagnosis in 1982. Initially, it was NOT a huge factor in my life. Would it come to be? I didn’t know. I could function fine for the time being. I was fortunate.
Our daughter, Sunshine, provided the levity when the kids sat at the dining room table, such that I could break the news of my diagnosis to them all at once. It was a bit too traumatic for Sunshine. She fainted! Good thing she was seated.
With a farm to maintain and a busy business to operate, thank God my wife was there to handle the lion’s share of responsibilities surrounding three kids. She also held a corporate IT job. Talk about double duty.
We both maintained a fever pitch in those days. Now, when I contemplate all that we accomplished, I am staggered by what we did. The vigor of youth is something to behold.
Was this disease going to squelch my long-held goal of retirement by age 50?
Would I still get all of those paddocks fenced? All of the hay made every year? Multiple additions to the house?
Thankfully MS is a disease slow to progress. Who knew? I was determined to not let it get in the way, but I had some hustling to do if I wanted to get to retirement at 50.
In the meantime, I hooked up with another Neurologist, renowned for his research and expertise in MS, Dr. Jeffrey Greenstein, a South African native, practices in Philadelphia . He has taken good care of me for many years now. He does to this day.
Over the years, my good doctor has kept his practice on the cutting edge of MS drug development including involvement in clinical trials for new drug therapies. That fact alone bolsters my confidence in him. He’s not falling asleep at the wheel.
That is not to say that I’m wild about the monthly trip to Philadelphia. Most of those are for a visit to the infusion room. They are as they sound. A half dozen or so patients sit in a room, each aside a wheeled stand apparatus from which hangs a bag of Tysabri, Ocrevus or whichever latest and greatest MS drug.
The infusion takes about an hour and a half to drip out of the bag and into my vein. I spend most of the time writing. Such efficiency, don’t you think?
Years ago, when I was being treated with a different drug, I had to give myself a weekly injection at home. There’s something a little disquieting about giving yourself a shot, but one grows accustomed. I tried to look at the bright side. Diabetics do this every day.
The efficacy of all the meds I’ve tried over the years has always seemed elusive. There’s been Avonex, Tecfidera, Copaxone, Interferon and, I’m sure a couple that I can’t remember. The years whiz by and to what extent the progression of the disease has been quelled…hey, I still have a pulse .
Of all the meds, the infused drug Tysabri has been the best for me. No, it’s not a cure, but surely I experience less “episodes” than before.
The efficacy of MS meds has heretofore been a measure of the extent to which they reduce the patient’s number of episodes. What is the nature of MS episodes?
First, an episode is a recurrence of one or a few symptoms that the patient has probably not experienced for a while. Get it? Relapsing/Remitting.
It might be just weariness or poor balance. It might be a return of numbness or blurred vision. It might be inability to walk without a cane or a wheelchair. It might be inability to concentrate on whatever the task. It might be all of the above.
Then again, it might be the Mother of them all… a knock down, drag out incident of VERTIGO, completely debilitating vertigo.
I experienced a vertigo episode once in an unusual setting for such. I was perched at the bar at the Pittstown Inn ! That is not the place to be under the vertigo circumstance.
I only had it a handful of times in my MS “career”. Fortunately this instance at the Inn was not accompanied by vomiting, as vertigo had been on prior occasions. Thank God for small favors!
So there I sat, totally incapable of sitting upright, my temple planted flat on the surface of the bar attempting to have an intelligible conversation with the kindly folks sitting next to me. Judy had left me there and rushed outside to get the car.
I was coherent, but devoid of any ability to sit up straight. At least I was making these folks laugh. I mentioned to them my thoughts as to how this must look: There he is, the Pittstown Sot. What a shame. This early in the evening and he’s pancaked there on the bar! How does his wife tolerate that?
Judy re-joined me at the bar with the car parked just outside. She, the bartender and the kindly couple joined in to help me hobble to the car. It wasn’t a pretty sight. While driving me home, Jude was lucky enough to contact some next-door neighbors via her cell phone. They were there, ready and waiting, to help usher me bedside when we got home. Good neighbors are invaluable!
I zonked off to sleep. Within a few hours I was wide awake as though nothing had happened. Another day, another episode.
Writing about all of this fun episode stuff has certainly been a less than pleasant walk down Memory Lane. In those days, it was an attempt to live a normal life when things weren’t too normal. It was attempting to conduct business as usual when, suddenly and unpredictably, retching my last meal was holding sway.
The most memorable episode took place on what I’ll call ‘auction day’. Aside from my publishing business, I occasionally dabbled in real estate investing. I purchased a neighboring property that was an exemplary candidate for New Jersey’s farmland preservation program.
For nine months that farm consumed my every day, getting it ready for re-sale and running it through the tedious preservation process. It was a labor of love, an intense regimen of work. My selected method of re-sale? Public auction.
Early morning. Auction day. Jude and I were at this farm tending to last minute details when I was overwhelmed by an MS episode. Intense nausea, vomiting, the whole nine yards. When re-composed, a buddy or two propped me up on a chair under the auction tent, but the goings-on were a blur.
I was slumped in my chair when I heard the hammer drop. To our good fortune there was hardly a question whether the final bid was acceptable. “Mark it sold”, exclaimed the auctioneer! Feeling better by that time, the ride home was, well, palatable.
OK, you’ve imagined the compromising circumstances that are rendered to the MS sufferer. Did I mention other niceties like loss of bowel control? Bladder control? It’s sort of a cruel hoax. Fortunately I’ve been able to quell most of these symptoms with dietary changes recommended by my doctor.
Then there are details that seem to defy sensibility. Why, for example, is taking a shower my most difficult part of every day? When finished with a shower ( of only moderate temperature ) I am thoroughly exhausted, barely able to make it ten feet to a chair to begin dressing. That’s with my walker, incidentally.
I can only guess it is my overall incapability to stand for very long. After shaving and showering I’ve been on my feet for a while. I know that sounds pretty pathetic, but it is what it is. I can’t remain standing for very long.
Janice Dean is a meteorologist for Fox News in New York City. She is noted for her upbeat presentation of the weather, for her personality and good looks. Her book, MOSTLY SUNNY, is the story of her own battle with MS. Janice describes interactions with people that are similar to my own.
Folks keep telling Janice how good she looks, in near disbelief that she is contending with an illness that has her not feeling so well inwardly. It doesn’t show. The disease is stealthy.
In like manner, the most common comment that I hear is “ well, you look good”, seemingly a rebuttal to the fact that I’m now 67 and contending with a serious disease. In her book, Janice refers to MS as “the look good disease.”
It is a curious juxtaposition. Maybe I look OK, but the disease speeds up the aging process. It is sometimes debilitating. It is frequently frustrating. It is exhausting more often than not. With balance compromised, the fear of falling is part of the everyday.
My motor skills are largely depleted. Buttoning a shirt may take 15 minutes if I can even complete it at all. My dear wife is talking me out of making morning coffee, a decades old tradition in the household. I leave too much of a mess!
Surely there is much that I used to do that is no longer in the cards. Horses were a big part of my life. I haven’t been on one in years, but do I ever still love to watch them in the paddocks. Not to mention, when Judy and friends come riding past the house it is the ultimate vicarious experience.
I was just about to put a lid on MY STORY when another little detail finally floated to the surface. It is secondarily related to MS, but in my quest to notify the newly diagnosed, I would be remiss not to mention it. Unfortunately it has to do with something you may be doing a lot of, as time goes on.
You may find yourself seated and less physically active than you wish. Hand in hand with that is a condition known as Edema, an accumulation of lymphatic fluid in the lower legs and feet. Swelling occurs. Perhaps itching spots which, when scratched, may bleed. No, it’s not sexy, but it is what it is.
MS is a process of capabilities that seem to be slipping away a bit too hurriedly. This is why I feel incredibly blessed to have retired at 50. I’ve been able to stay ahead of the disease a little. I’ve been making up for lost time for a long time. Life is good.
RETIREMENT! NOW WHAT?
Seventeen years ago I reached age 50, the notch where I had in mind to retire. It was sweet music when our financial lady said, “Go ahead !”
Truth be told, I wasn’t sure that I would’ve been able to work much longer, anyway. Nearly falling asleep at my desk was getting commonplace. So, the timing of my retirement goal and the timing of my overall incapacity to work was simultaneous. Uncannily so. I love it when a plan comes together. It took less than a day to adjust to retirement.
I have long believed that you become what you think about most of the time. If you’ve been thinking about retirement for a long time, chances are that you’re well on your way to getting there. You’ve made provisions for such, gradually.
Coping with this disease becomes a matter of attitude adjustment. Just for the record, self- pity has no place here. There are just too many people in worse shape than me.
You need not acquiesce to MS. Do your work, despite setbacks, fight back. Seek to find the brighter side of the situation. It is consoling, for example, how MS lays bare the kinder natures of people.
There are times in a public setting, for example, when folks will see that I am struggling just to get from point A to B. People want to help. They go out of their way to help, even if it’s just holding a door open or moving a chair out of the way, even moving themselves out of the way.
Emerson once wrote, “there is always some great leveling circumstance”. Indeed, I’ve had a leveling circumstance. I have MS, but the circumstance augurs in my favor. Fortune and fate have both been kind.
Go ahead. Re-write the book on retirement to your liking. Surely it’s not a time to just fold your tent. There will be plenty of time to push back on the recliner as it is. Do the things that you’ve always wanted to do while you’re able.
To that end, I’ve had a few limitations. I have for a long time, but that doesn’t mean that I can’t get perched on the John Deere Gator and take a leisurely drive around the farm. That never gets old.
Sadly, I did have to give up my driver’s license a few years back. That one hurt. I had one of those short- circuit incidents in a storefront parking lot. My foot depressed the gas while my brain was telling it to brake. I was just plain lucky not to run anyone over, like the store owner who I barely missed.
Obviously that was something that could happen to me again. I suppose that I could have just continued to drive, but no. That was just too scary, not to mention unsafe.
Regarding the farm and the work involved, I’ve been real fortunate. The hay is made by a fellow farmer who I’ve known since grade school. He’s efficient, neat as a pin and fair. It’s tough work. He makes it look easy.
Judy and I were blessed one day in 2010 when Sam Dalley walked onto the farm, back when Sam was still in high school. His Mom happened to mention to Judy that her son loved to split wood.
Well, trumpets blared and the winged seraphs of Heaven bestowed comfort over all the lands ! Sam was a Godsend who, to this day, does much of the work that needs to be done here on the farm. Oh, and we pay him for it, too.
Seriously though, our place involves more maintenance than most folks would be willing to bite off. Sam has much to do with the upkeep that I haven’t been able to do for a long time.
I would be remiss if, in this same discussion, a ton of kudos didn’t go to my dearly beloved. Judy is out there every day doing work that needs to be done, as if watching over me isn’t chore enough.
Over the years, living with MS has certainly required some adjustment. Using a cane is common. Using a walker, less so. Occasionally a wheelchair is necessary, but I have fun with it. It could all be but the lyrics of a country tune. “Is there anything fair out there? She got the recliner and I got the wheelchair.”
Speaking of making adjustments, why not intermix my drug regimen with a bit of ancient Chinese medicine? The jury is still out on my acupuncture sessions, but there’s been no harmful side effects. I remain vigilant for any positive results and have started to so witness.
Bottom line? We’ve both had a relaxed retirement for years now, and it’s been where we want to be… here on the farm. Yes, my MS gets in the way, but not in an overwhelming manner. I will say this, though: I awoke this morning at 3:36 thinking about some treatise that I’d been working on a while ago.
I couldn’t remember what it was, but then it came to me. I write these final words now. Whew, maybe my MS was getting in the way, but I’m back now.
Farm work is pretty much out of the question, so I’ve changed the work that I do. It is far less strenuous, but still calls for a little mental acuity. That’s right. I write! The pay is lousy, but it’s what I love to do.
We recently had a deck built on the end of the house offering the best view. I have dubbed this deck the “Writer’s Perch”, given its inspirational view. It invites a deliberate pace. I take heed. I write slowly, read slowly, walk and talk slowly.
I guess that’s the MS talking, but it’s my preferred pace anyway. There it is again, the leveling circumstance.
Here on the Perch, a car infrequently motors by, more commonly , a horse and rider. The pace befits me perfectly. I’ve written two books, a bundle of poetry and my blog suffers from an occasional dearth of content, but I’m having fun.
I’ve typed it all, pecking with one finger on my iPad mini. Apple instructs not to attempt a book on a mini, but I read that after writing two.
Life deals all of us a deck of cards, you know. They are what they are. Play your hand. Enjoy the game. Unless there is an awfully good excuse not to, stay positive. Go placidly.
From the Writer’s Perch, I am Pete Tucker