The New Normal

Normal

2019 will mark the eleventh year I have been living with MS. After it rudely introduced itself,  first on a treadmill and then a few weeks later when I was outside mowing the lawn, the symptoms weren’t that cumbersome. It took a couple of years before it permanently changed the way I walked, and the progression has been slow but steady ever since.

Some years have been worse than others on the progression front, but the result has been the same: my physical abilities are worse on December 31st than they were on January 1st.  That isn’t unusual given the nature of my beast, but as I was cruising with the blimp the other night watching a video that chronicled the Red Sox magical 2018 season, a thought occurred to me that in retrospect was both surprising and sad.

I honestly can’t remember what it feels like not to have MS.

That doesn’t mean I don’t I remember the life I once had, the one with no physical restrictions. After all, I still have the pictures and video. That was a life where I didn’t think twice about undertaking any chore,  where I could to stay outdoors in the summer heat as long as I wanted, and where I could play eighteen holes of golf on any kind of course. Those days seem so carefree and foreign now.

So yes, I remember the events. What is forgotten, however, is what it actually felt like to walk unimpededly, without thinking about every step I take. I don’t remember what it felt like wondering if every change in my body is an indication of additional slippage into the rabbit hole of progressive MS. I don’t remember what it felt like to run, go on long walks, to ride a bike, to frolic on the beach, to take the stairs without measuring each step, or not having to worry about falling in public. I don’t remember what it was like not having to worry about where the nearest bathroom is for fear of peeing myself, or not requiring a urinal within arms reach every time I am in my car.

My new normal has eclipsed everything about my old self. The mindset where everything is assumed and taken for granted is dead. I don’t remember anything about what is was like to be whole and able bodied. I don’t remember what it was like not having to go to a hospital every month to have my blood filtered and replaced, or having toxins infused in the hope that my body will stop cannibalizing itself.

I don’t think I’m unique in that regard, but I consider this disability as the death of my former self. That might be hyperbole because I obviously still reside in the land of the living. I have the same emotions, many of the old concerns, and continue to plod forward and rebel against my reality any way I can. In some ways I am better off mentally because I no longer take anything for granted, appreciate the little things more, and therefore have a better perspective on life. But it is not an exaggeration to say that I am a fundamentally different person than I was eleven years ago, and that this version of me could feel like Nirvana compared to what my status might be another eleven years from now.

This is the part of living with a chronic illness/disability that nobody talks about or explains to you. When you learn about your new reality, it’s understood at a certain level that your life will change. If you accept and adapt to that change like I did, you adjust to a failing body with as much grace and stubbornness as can be mustered. You don’t give up or give in, but in that process you also don’t realize that your previous life will be relegated to the dustbin of your memory until the day comes, like it did for me earlier this week, when you realize you can’t remember what it felt like to be the person you once were.

An argument can be made that this is a part of the aging process, but I’m not willing to concede that because I’m not even sixty yet. I’m no spring chicken, but I’m not an old geezer either. This is not the mournful lament of a man in his seventies who is acknowledging the effects of an aging body for the first time. My epiphany was the product of this neurological condition that has consumed my life over the last decade, and it caught me completely off guard.

The fact that I can’t remember any of the stuff I mentioned burst my denial bubble, at least temporarily. Not being able to remember what it felt like to have two good legs is like not being able to remember what it felt like to fall in love the first time, to lose your virginity, or to hold your infant child for the first time.

I’ll get over it, because what’s the point of crying over spilled milk? But it really does suck.

 

The Winter Blues

blues

Snow.

Ice.

Wind.

Bitter Cold

Long, dark days.

I don’t generally complain about the winter or yearn for spring until after the Super Bowl, but here we are in the middle of January, I am so done with winter, and I’ve felt this way for weeks. I also don’t normally dwell on these kinds of developments, but this one has got me thinking because I think it’s significant.

While our snowfall this year is above normal, there have been much snowier winters within the last several years. The darkness thing is irrelevant because winters always suck in terms of the amount of daylight we get. It’s dark when I wake up, dark when I arrive at work, and mostly dark when I get home, as we have gained an hour of daylight the last few weeks. Still, I was watching television the other night and glanced at the clock, which read 8PM. It felt like it was 11PM.

It has been colder than a witch’s tit so far this winter, but the same can be said for most of this country, I think. We’ve had more wind-chill warnings than all of last year, and more than in recent memory. The ice doesn’t melt, and the wind cuts through one’s garments and bites at your skin. This is one of the reasons why spring can’t get here soon enough, but that isn’t the main reason.

The sad fact is this winter has been much harder hard physically than any winter I can remember, and I take that as a sign that there has been a fundamental change in how my symptoms have progressed. Everything has been a little harder this year, travelling for one, but I can manage most of these situations. Winters, unfortunately, are different. Walking outdoors often feels like negotiating a mine field. Since everything has  remained frozen for longer periods of time, each step represents a potential disaster. If I fall during any other season, it’s usually my fault for not paying attention, and it’s because of something stupid. The falls aren’t severe as I don’t lose complete control of my body, which give me more ability to protect my body before it hits the ground.

But falling during the winter is usually a true accident. Since I am paying close attention to every step, any mishap is a complete and sudden surprise caused by a patch of black ice I don’t see, or the rubber tip of my cane sliding off something slippery. Either way, result is a violent and suddenly unexpected shift of balance, which prevents me from positioning and cushioning my body before it hits the frozen terrain. Under these circumstances, the chance for broken bones, shredded ligaments, or both, is greater.  Neither has happened, and hopefully won’t because I’m hyper-focused most of the time when I am outside. But there have been a couple times moments so far this year where I was on the verge.

If that wasn’t bad enough, the constant toothache in my lower back and hip prove that my body is protesting more than ever before. I’m sure the extra strain on those areas  from not having the strength in my legs when I’m  working outside doesn’t help. More than any other year, the winter of 2017-2018 has become a test of endurance, both physically and mentally

So yes, I am fantasizing about spring and summer, but summer is no bargain either. Heat and humidity is no longer a friend of mine and can sap my energy in the blink of an eye, but it is easier to navigate without the snow and ice. Besides, I have always preferred sweating over freezing. At least you can wear comfortable clothes.

There isn’t a lot I can do for now other than complain. I’m not going to relocate south because the summer heat would kill me, and New England is my home. As I have mention in earlier posts, moving to a more MS friendly house is high on our list of priorities, but all that will do is make indoor and outdoor maintenance easier. It won’t change anything as far as navigating winter roads, driveways, parking lots, and sidewalks are concerned. It won’t stop the cold and won’t prevent having to deal with snow and ice.

We can spend January through March in warmer weather climates, but I don’t have a job where I can work from home all of the time. I am also, health permitting, seven to eight years from retirement, so that option won’t be on the table for a while.

At least it is supposed to get into the fifties tomorrow, but if the trends continue the way they have so far this year, it will be in the teens again soon thereafter. So much for a January thaw.

Alas, I’m stuck with having to endure winters for the foreseeable future, and have eight more weeks of this shit to endure before spring officially starts. I’ll manage, what choice is there?

And I will probably bitch and moan about the heat and humidity come summer.