With apologies to Donald Yetter Gardner
All I want for Christmas
Is my two good legs
My two good legs
Just my two good legs
Gee, if I could only have my two good legs
Then I could say goodbye to needles
It seems so long since I could say
May I have the pleasure of this dance
Gosh, o gee
How happy I’d be
To walk without annoyance
All I want for Christmas is my two good legs
My two good legs
Just my two good legs
Gee, if I could only have my two good legs
Then I would be a happy camper
Back when I had two good legs
There wasn’t anything I couldn’t try
But now when I exert myself
It makes me want to cry
All I want for Christmas is my two good legs
My two good legs
Just my two good legs
Gee, if only could only my two good legs
My spine would have all of its myelin
Then I’d could embrace every season
Then I’d feel blessed beyond all reason
MERRY CHRISTMAS EVERYONE. I hope Santa treats you well, that you are surrounded by love, and bathed in happiness.
I’ve never been a fan of winter. Having lived in New England for most of my life, I do enjoy having four distinct seasons, and I love the sight of the snow falling outdoors, provided I don’t have to commute in it. White Christmases are wonderful, but those have been a hit or miss proposition over the years. Before MS entered my world, I enjoyed frolicking in the snow, engaging in snowball fights, sledding down a steep hill, and even removing snow from the driveway and sidewalks, at least some of the time. I don’t mind the chilly temperatures. but could do without the bitter cold and wind. The truth is, once the Super Bowl is over, I’m ready for spring, but February and March seem to last forever.
Getting around during the winter could be cumbersome at times, but it was never unmanageable. Over the last several years however, clearing portions of the driveway and sidewalks have become progressively more difficult. So has been getting around on a snowy terrain. Nonetheless, there wasn’t anything winter could throw at me that I couldn’t handle, until this year, that is. There is an old foe that I have succumbed to, whom I no longer bother trying to challenge. That foe is ice.
Ice has become the bane of my winter existence. We rarely get ice storms, but the snow invariably leaves frozen stretches on my driveway and sidewalks regardless of how well they are plowed or cleared. Plus, the snow often turns into slush, which freezes easily. Worst of all, the snow on or surrounding these surfaces melt during the day and re-freeze at night, leaving a flat, frozen, and often invisible slick of black ice that can easily take me down. And if there is a melt followed by a long stretch of subfreezing weather, the ice can linger for days, but I digress.
We received our first snowfall of the year last week. It wasn’t a large accumulation, and the snow was easy to remove. The next day was clear, the sun was bright and a lot of the snow melted. When the sun set, the temps dipped below freezing and the standing water froze solid. I ventured outside the following morning to move something in the back yard, and had to cross the driveway to do it. On my way there, I mistakenly stepped on one of those frozen slicks and stopped dead in my tracks.
I used to be able to simply shuffle my feet along an icy surface to get where I needed to go, but the deteriorating balance has made that more difficult. What little strength or control I have in the bad leg is rendered moot by a slick surface, and the good leg, which handles most of the body weight, tends to slide more on icy surfaces because of the weight it handles. If that slides out from under me, I would lose complete control and the results would be both comical and ugly.
Unfortunately, I was on a slanted surface, and I soon learned that negotiating icy surfaces that are even remotely slanted is impossible. Gravity takes over, my body starts leaning, and my feet started sliding. Even my cane was rendered useless because rubber-tipped canes have no traction on ice.
I was literally stranded on what looked like a four by four section of driveway, and I was completely helpless and vulnerable. I couldn’t crawl, because that meant I would have to move my feet to get onto my knees, but if I did that, they could slide out from under me. I couldn’t gingerly slide my feet either because the bad leg was on the downhill slide of the slant and kept moving in that direction. I could see myself doing a split on the ice, tearing my groin and hamstrings in the process, howling in pain.
After the initial panic subsided, I saw that all I had to do was reach over, plant the cane into a small pile snow that was within arm’s reach at the edge of the driveway, and pull myself off across the remaining two or three feet without having to lift my feet off the ground. Once I was on solid, snow covered ground, I waddled a few feet down the snowy lawn until I reached a flatter, unfrozen section to the driveway, and made my way back into the house.
With ice, every step is an disaster waiting to happen. It snowed again yesterday and left a thin film on the driveway and sidewalk. When I went to get the mail, I swear I heard the theme from the movie Jaws playing in my head, except the slick sidewalk was lurking instead of a Great White Shark. It didn’t bite me this time because the snow that covered parts of the walk did not have an icy foundation, and my feet could easily grip the snowy surface.
Public parking lots and sidewalks are even worse. At least I can to a certain extent control how well my home base is maintained when it comes to snow and ice removal, but all bets are off in pubic areas. At least the handicap parking areas are close to most entrances, provided some yahoo hasn’t decided to take the last open spot to park in because there wasn’t an open space nearby.
I once toyed with the idea of moving to a warmer climate when my working days are over, but as much as I dislike being cold and dealing with the snow, heat and MS are not a good match, so I don’t see myself leaving New England permanently. Maybe finding a more temperate place to live from January through March is the next best thing.
Either that, or I need invest in a lot of driveway salt. Maybe wearing a helmet, shoulder, elbow and knee pads when I venture outside would be a good idea too!
I love sliding into bed at night. By that time, my body is tired and stiff from having to carry itself on one good leg throughout the day. My hip is sore, my lower back is barking, my foot is dragging terribly because I can barely lift it, and my knee won’t bend without a significant effort. In fact, it is ramrod straight, and almost feels like it is hyper-extended, although it doesn’t hurt.
When I slide under those soft, warm covers, I can feel my body exhale and melt into the mattress. It feels like I’m weightless, and this poor body, that has trudged and wobbled around all day, finally has a chance to lay prone and release the pressure that has coiled inside it.
The flip side of this is that I have to drag my ass out of its warm cocoon the following morning, which is often the most difficult accomplishment of the day.
First of all, it’s a struggle moving in bed, other than the periodic leg twitching. Turning onto my side is an endeavor, particularly when I turn to my left. The only way I can accomplish that is to reach across the mattress, grab onto its side with my right hand, and literally pull myself onto my side. Turning to my right is easier, but instead of grabbing the mattress, I have to tuck my right arm behind my back and flop over onto my side, like a fish out of water. I therefore have a tendency to sleep on my back all the time, which has forced me to sleep with a pillow under my knees to prevent my back from getting sorer and stiffer, which further complicates the turning process.
So by the time my alarm alerts me to the new day, my body is fully rested, but it also feels like it’s one hundred years old. You see, I can’t just sit upright from a prone position anymore, and as I have already mentioned, turning on my side isn’t as easy as it sounds. Getting out of the left side of the bed is almost impossible, so after I turn to my right, I literally have to shimmy my lower half to the side of the bed, push myself upright, then gently grab the bad leg and place it on the floor. The good leg easily follows. That’s the simple part.
My leg is the weakest first thing in the morning, so I feel like a newborn colt when I stand for the first time every day. They are also unsteady and, like the colt, it looks as if I am learning to stand and walk for the first time. Compound that with poor balance, which is also at its worst first thing in the morning, and I’m sure I look like a staggering drunk as I make my way to the bathroom. I literally have my right hand on the wall from the time I get out of bed until I reach the bathroom, and there have been many times where that short distance from the bed to the wall almost ended in failure. It feels like gravity is doing it’s best to suck me down onto the floor, but it hasn’t happened yet.
I am a lot steadier when the morning bathroom routine is completed, but the limb is still very weak. The next mountain to climb is getting dressed. Getting my clothes on above the waist is a piece of cake, but not so much with the lower half. Underwear used to be an issue until I learned that the easiest way to get them on was to simply grab the bad leg by the ankle and place it where it needs to go. Same with the socks, but there are two complicating factors in play.
The first is that I am not flexible at all, and I don’t think any amount of stretching, which is hard to do in the first place, will change that. If you have ever strained your lower back, you how difficult it is to put any article of clothing on your legs or feet. That’s how it is for me, minus the searing back pain. Some mornings, the body is so stiff that it feels like the act of getting my leg high enough, and bending my body forward enough to get my socks on, will result in a hernia, a rupture, or a complete blowout of the lower back. Maybe all three.
Then there is the balance issue. Most people think that balance is an issue when one is standing, but it can also be a problem when you’re sitting. When I’m getting dressed, if my butt is to too close to the edge of the bed, and I’m leaning forward a little too far, gravity will take over and I’ll crumple to the floor. Falling is embarrassing enough when you’re upright, but falling when you are already sitting down would be the ultimate humiliation, even if nobody is there to see it. It hasn’t happened yet, but I have come close several times. Mostly when my mind is somewhere else.
So now the chore is almost complete. I am fully dressed and ready to take on the new day, but before that can occur, I have to take my first trip down the stairs. This is the most perilous thing I do all day, not only because of the unsteadiness, but also because I have my socks on, which tends to make the wooden stairs feel very slippery. Plus, it is dark, so I make sure to count every one of those fourteen steps until I reach the ground floor. One hand is firmly on the rail and the other is sliding along the wall when I make that trek, which helps not only maintain my balance, but will keep me upright if the foot slips or the knee doesn’t bend and I lurch forward unexpectedly. As you can tell, I fear falling down those stairs. I don’t think it will ever happen, but I believe that if I were to ever suffer a life-threatening MS related mishap, falling down those stairs would be the most likely scenario.
Once I’m downstairs, all I have to do is get my stuff together for the ride into work, followed by the final act of putting my shoes on and tying them, which often takes two or three attempts. You see, the AFO brace I wear is in that shoe. I have to hold the leg by the calf and aim my toes into the shoe. Once they are in, I can lean forward, hold the back of the shoe with my fingers and slide the rest of my foot in, before I tie the strings. I’m sure this process looks very odd to someone who witnesses it for the first time.
Now I’m golden. The stiffness that existed twenty minutes earlier is gone, and my strength and balance is starting to come back, although it will take another hour or so to reach maximum capacity. I’m ready for the day and all that comes with it.
By day’s end, the body is once again tired, ragged and spent. I’m off my feet for most of the evening after dinner and the evening chores are done. My rocker recliner calls and welcomes me as I watch television with my wife. Once it is time to turn in, the legs protest having to carry my 190 plus pounds once again. It actually feels like a thousand pounds, but I shuffle up those stairs one last time to start the bedtime routine, then slide under those blessed covers and let the tension melt away. It has become my favorite time of the day.
I wish I could say the same thing about the next morning, but one has to look at the bright side. At least there is a next morning.
The brain is an amazing organ, a super computer that far exceeds anything technology can fathom, and hopefully never will. On the medical front, numerous clinicians have told me it is the final frontier, the one true mystery that remains to be solved, certainly not in my lifetime. Perhaps never.
The brain controls everything, and is also a focal point for those of us who suffer from MS. Some of us have lesions on the brain, some of us have demyelination of the spine, and some of us have both. Today’s focus however is not on the physical aspects of the brain and how it relates to us, but the mental aspect. If we let our imaginations run wild and generate fear and anxiety about our present and future, we aren’t doing ourselves any favors. Simply put, we have to tell our minds to shut up.
Easier said than done, admittedly. We can’t change our DNA, or how we are hard-wired. Some of us are more anxiety-ridden, or prone to bouts of it, than others, while some are better at letting things slide. But nobody who has a chronic illness is exempt from thinking about the implications of their reality. Even those who are more kumbya and better at letting things slide struggle from time to time, and I am a textbook example of that.
I’ve stated a number of times that my attitude is not to dwell on the what-ifs or the why-me’s, and I stand by that. I try to keep my condition at arms-length, and lock it inside a secure vault somewhere in the recesses of my mind. However, there have been and continue to be times where the doubts, which I call Messi*, break free of the vault and run amok. I can feel the physical fallout when that happens, and the struggle is to corral Messi and drag her sorry ass, often kicking and screaming, back into the vault, and double the locks.
For instance, when the symptoms first started to appear and I wasn’t yet diagnosed, I didn’t have a clue what was going on, but I knew it wasn’t good. One train of thought was that I might have ALS, which really freaked me out. It was actually a relief when I learned it was “only” MS.
Every time there was a new twitch or strange sensation, Messi started speculating on what it meant, and it was never kind. As my progression slowed with the help of a good neurologist and the drug/apheresis routine he placed me on, I came to terms with my condition. I set it aside and worked hard to not let it rule my life.
Still, when something changes, I hear Messi growling. For instance, when the progression rose above the knee and made everything harder, it was hard to ignore. I started doing the math, which went something like this: I’ve had this for ten years, and for the first two the symptoms progressed quickly, stabilized, then progressed again this year to where it is now. So that either means I’ve got another ten before I really have to start worrying, or it means that I’m wheelchair bound in two to three. Therefore, I need to do a, b and c. But what if it happens more quickly? What happens if I can’t work, etc., etc., etc.
Here’s another example: I do a lot of keyboard work, and have always been able to type quickly and accurately. I never look at the keyboard. Once I got MS, I noticed a more typos, but dismissed it because they didn’t appear to be too many to dwell on, and thought I might be noticing what has always been there because of this new thing I was dealing with. Now, however, I can’t type a paragraph, and sometimes a sentence, without a typo of some kind. In fact, I’ve made four of them in this one sentence before I cleaned it up. Does this mean the MS is beginning to progress into my hands, or is my keyboard getting old and decrepit? If I go down that particular progression path, I’ll be a basket case. So I deposited this concern in a separate compartment inside that vault, and will address it during my next neurologist appointment.
One last example: I participate in a number of message boards for people living with MS. I view myself as a MS veteran, and consider it important to give back and share my wisdom and experience, particularly to those who have just been diagnosed. Being part of these boards makes me feel useful, and also provides ideas for things to write about in future blog postings. Unfortunately, it also makes me realize how better off I am compared to what I read. There are so many people who suffer far worse than me, and are dealing with a lot heavier shit that I am in terms of family, relationships and other personal matters that I never considered. Messi feeds on that, and is begging to whisper “that’s going to be you” in my ear over and over again, trying to make me a believer. I know I have nothing to worry about on the family side of the equation, but the physical part? I already knew that everything they mention is part of the deal, potentially. But actually reading what people endure and what it does to their lives is more agonizing and makes it real. That could be me. Who the hell knows?
So it is a constant battle to keep Messi locked away and sedated, knowing full well one trigger event could occur that will unleash her, and perhaps make her impossible to contain. I don’t doubt the unleashing part of that scenario, but I would like to think that I will eventually be able to reel her in, somehow. Like I said, we are who we are, and I am a glass-half full, eternal optimist kind of guy. That will be my saving grace.
After all, we can’t change the cards we were dealt. Bemoaning our fate only shines a light on what we’ve lost, and can lead us down the slippery slope of what an uncertain future might bring. This train of thought only serves to add more stress that will stoke our anxieties and often raise hell with our symptoms. It’s fruitless and self destructive.
I saw a question posted on a message board recently that asked if we mourned the person we once were. I didn’t like what the question implied, because the me who didn’t have MS isn’t dead. I wasn’t body-snatched while everyone was asleep and replaced with a clone. I’m still the same guy, albeit one who limps like quasimodo seeking sanctuary, is in danger of falling every time he gets on his feet, is in danger of falling down the stairs if he isn’t careful (two more typos corrected), and has a hard time putting on and taking off his underwear, socks and shoes every day. I still have the same values, the same feelings, the stuff that made me the unique person I am. The only thing that has changed is my perspective. I’m not terminal, for God’s sake.
I’m fine with the premise that, in the words of a fellow blogger, it is okay to not be okay. https://msgracefulnot.com/2017/11/28/its-okay-not-to-be-okay/
And, I don’t see that changing, as long as my mind doesn’t provoke Messi.
*Messi is a play on words, combining the term MS with mess, which it does with my head. I refer to Messi as she because, in my opinion, females have the knack for pushing men’s buttons. I also believe while they are the more protective species in the animal kingdom, they are also more vicious.
Living with MS can be frustrating, grueling and depressing. Having said that, there is more good than bad in my life, and I thought it appropriate during this traditional time of the year to recognize and give thanks to everything that is good in my life, and keeps me going.
I am thankful for my family, who loves me, supports me, has never thought of me as damaged goods or anything less than I have ever been. The same applies to my friends, from Maine to Southern California, from Florida to Washington, and all points in between. Thank you all.
I am thankful for my colleagues at work, who are an extended family and have never treated me with pity, or expect anything less from me than they would expect from themselves.
I am thankful that I can still work full time be productive, and provide financial support for my family.
I am thankful that I can still walk, exercise, drive, get around (albeit with some difficulty) and lead a mostly normal life.
I am really, REALLY, thankful that I don’t live with pain.
I am thankful for my neurologist, who has limited my progression and kept it at a glacier-like pace.
I am thankful for modern medicine.
I am thankful that I am not afraid of needles.
I am thankful the sight of blood doesn’t freak me out.
I am thankful for those of you who read and follow this blog, for your comments, encouragement, and friendship.
I am thankful for all of you who have read my manuscript and helped me get it to the point where (hopefully) 2018 may be the year it gets published.
I am thankful that my parents, who have been gone for two years and whom I miss dearly, both lived to a ripe, old age and were able to see my son grow into his late teens. I am grateful for everything they taught me. I am thankful that they did not lose their mental or physical sharpness like a lot of people their age, and that they did not linger or suffer.
I am thankful for seeing the Red Sox win not only one, but three world series championships during my lifetime.
I am thankful for being on this side of the dirt.
Happy Thanksgiving everybody. I hope you all have a happy, healthy and joyous holiday season.
The symptoms were subtle when I was first diagnosed, but after a few years into my battle with MS, the progression became steadier, and I began to use a cane whenever I left the house. The interferons I was injecting myself with weren’t doing a damn thing, and I had become dissatisfied with my neurologist because he appeared unsure about how to proceed. In fact, he once called another neurologist to confirm a thought he had while I was in the office with him. This didn’t inspire a lot of confidence, so I decided to make a change .
I work for a large health system, and when I asked my boss if he knew anyone in the MS field I should consider, he deferred to the organization’s Medical Chief of Staff for a recommendation, and was given the name of a neurologist close to where I work, who was reputed to be one of the best clinicians in the state. I made the switch, and later learned that he was the guy my former neurologist had called that day.
During our first appointment, he declared I should change medications, which made me happy. I had come to hate injecting myself, particularly when I didn’t notice any improvement whatsoever on the progression front. In hindsight, I don’t know why I agreed to take them in the first place, because I knew they were designed more for the relapsing remitting (RRMS) kind, than the progressive kind I had. Tysabri wasn’t an option because the blood test he ordered when I scheduled the visit indicated I had the JC Virus. After listing the options available to me, he recommended I start monthly infusions of steroids and a chemo drug called cytoxan. Shocked might be too strong a word to describe my initial reaction, but I was definitely surprised and confused. I mean, how in the world would a cancer drug help me. It seems silly now, but all I thought about at the time was getting sick and having my hair fall out, and asked him if I would have to deal with that.
He assured me the dose I would be getting wouldn’t cause those side effects, and I would be given an anti-nausea med just in case. When I asked why he believed this was the appropriate way to go, he explained that MS was an auto-immune disease and described what that meant. To paraphrase, my immune system had run amok, and my body was cannibalizing itself in terms of the demyelination that had occurred. The chemo would suppress the immune system so it would stop attacking my body, thus putting brakes on the progression. This explanation made sense, so I consented to the monthly routine.
This decision was made with a lot of trepidation that I didn’t share, because I didn’t want to sound like a wimp (I don’t have that issue anymore). Part of the anxiety evolved from the fact that I would be getting monthly blood tests to check my liver enzymes, because the chemo had the potential to fuck up my liver, which thrilled me. There were other things they would be checking to make sure the chemo wasn’t doing more harm than good, but that was the one that I latched onto.
My other fear was I would become susceptible to every germ known to mankind, because I would be shutting my immune system down. Consequently, I assumed I would be sick all the time, catching colds and any flu bug or any virus that was floating around. I thought the winters would become an especially miserable, unending chain of one illness after another. After all, wasn’t this a logical assumption, given that my front line of health defense was going to be taking a siesta? I was afraid that the devil I didn’t know would become worse than the one I did, but hoped that the reality would be different, and that the treatment would turn out to be the lesser of the two evils.
That was seven or eight years ago, and I look back at that time with amusement. Why? Because the weirdest and most ironic thing that has occurred since I’ve been getting these infusions, is that I’ve been remarkably healthy. Unusually healthy, in fact. Just mentioning it makes me wonder if I am jinxing myself for the upcoming cold and flu season, but I can’t deny the truth.
When I first started the treatments, I may have encountered the occasional cold, sinus infection or flu. I can’t say for sure because I don’t remember those kinds of details from that long ago, but if they did occur, they were far and few in between. What I can say with absolute confidence, is the last cold I had was two or three years ago, and it was short-lived. I don’t remember the last time I was sick with the flu, had a stomach virus, or anything like that. Last year, everyone in my household had something, and had it on more than one occasion. I also work in a large office, where everybody was sick at one time or another. Not me. I was the oasis of health in a sea of sickness at home and at work. I’m sure germs were floating all around me on a daily basis, yet I remained unscathed. It’s bizarre.
Is this pure coincidence? I think not. I believe that even though I’m trying to put my immune system to sleep, it remains overactive enough to shield me from the maladies that latch onto everyone else, yet not so active that the progression accelerates. I guess my neurologist knew what he was talking about.
This winter is going to test this theory, because I have switched to a new chemo agent that I will take every six months, instead of one Friday every month. You see, even though I didn’t get sick, I felt like I had the flu every Sunday that followed the Friday infusion, a parting gift from the chemo. This new drug will be administered twice a year and actually kills certain cells (T cells?). I assume this means the drug is stronger, takes longer to get out of my system, which in turn means it takes longer for the cells that it kills to be replenished enough to give them another whack. My next scheduled infusion isn’t until March, so it will be interesting to see if I will enjoy another illness-free winter. Should that occur, how can I not conclude that my over-active immune system is like Pac-Man, gobbling up every germ seeking shelter before it can settle in my sinus or gut?
A definite plus, but I’d rather have two good legs.