Thanksgiving Inventory

Thanksgiving

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 Auto-Immune Irony

illness

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.

 

Home Improvement

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Last Saturday evening, I was sitting around the fire pit in my back yard with my wife and a friend, sharing a drink and shooting the breeze. It was a perfect autumn evening: cool and clear, with no wind. A bright, full moon had emerged from behind the hills across the valley my yard overlooks, and was now perched in the center of the sky, casting moon shadows at various places in the yard. We had paused for a moment, and all you could hear was the hissing and crackling of the fire. I gazed at the moon and the picturesque scene, and thought: “I’m really going to miss this place.”

I need a new house, you see.

My condition is not the only reason I need to move, because I’m at the point in my life where scaling down makes sense. I never enjoyed yard work all that much, never liked house cleaning (who does?), and don’t take much pleasure in house maintenance, primarily because I’m not handy. A smaller house with a smaller, flatter yard would be cheaper to maintain, and require less work to take care of. The by-product of that would presumably be more free time for my wife and I to enjoy.

MS simply amplifies the need. Our house is too big for one person to maintain, and it’s frustrating for me to see my wife take on all of the inside house stuff knowing she could use my help. The cost of hiring people to mow a yard that is very hilly, remove snow from a driveway that is long, uphill and curvy, in addition to a portion of a private road we live on, is becoming prohibitive. Navigating the three stories (main floor, upstairs and basement) is becoming more cumbersome, and walking on terrain that has few flat spots has become a problem.

I’ve lived here the longest as an adult, so my connection to the place is deeper than any of my other homes, including my parent’s house. When I left home during my early twenties, I was ready to spread my wings and assert my independence. There wasn’t any melancholy or sadness, and when my parents passed away a couple of years ago, any emotional attachment I may have felt with the place was buried with them.

This is different. Quite frankly, we love our house. It is perched on a hill, has a wonderful view of a the Connecticut hills, and the interior decor and furnishings are just about perfect. So is the landscaping. It’s the house our son, who is now 19, was raised in. It took less than six months for us to move into the place once ground was broken, and we watched every step of the construction process, from the time the foundation was poured to the time we moved in. A lot of memories, good and bad, reside within those four walls, and it is going to feel very strange to call a new place home.

What is most daunting, though, is the thought of moving.

Back in the nineties, when I was twenty years younger, stronger, and had two good legs, we moved four times within a five year period. Two of those moves involved crossing state lines. The first move was a grand adventure, but the novelty had certainly worn off by move number four, into our current home. After that one, I swore that if I moved again soon, it would be in a pine box.

So I know what is involved, and understand that this move will be a royal bitch. First of all, we have far more stuff than we’ve ever had to move before, and we aren’t in our thirties anymore. Plus, I have a hard enough time helping decorate the Christmas Tree, so I have no illusions about what I will be bringing to the table when it comes to packing and moving a home. Maybe I’ll get an adrenaline rush and surprise myself, but that’s wishful thinking. The safer bet is that the process of moving is going to suck, and I will hate every second of it.

Having said that, the idea of a new place is exciting. We’ve built two houses already, and it is cool to see the planning and thought translate into the real thing during the construction process. Plus, when the new home is complete, you don’t have to worry about stuff breaking down, or having to replace anything in the near future. I relish the idea of having everything on one floor, ramps leading into the house from the sidewalks and garage, wide hallways that can accommodate a wheelchair, a bathroom/shower that will as well, and a stairway into the basement that has a stair lift.

As you can surmise, the new house will be ADA compliant, and knowing that we won’t have to worry anymore about my condition making it impossible to live in my home will put all of our minds at ease.  We want to incorporate everything we love about our current place, and, budget permitting, add a few things we don’t have but wish we did, like a sun room.

Do I have to move right away? Technically, no, but the progression clock is ticking. I would rather be in a place that will easily accommodate my needs should the day arrive when I’m wheelchair-bound, than have to look for a place because I have a hard time getting in and out of my home. Planning for a move now allows us to think clinically and rationally, and leads to better decision making. Waiting until it’s too late makes the process more emotional and impulsive.

My self imposed moving deadline is 2019. The biggest issue confronting us is finding a piece of property in our current town that checks all the boxes, and doesn’t cost an arm and a leg. That isn’t easy to come by in the section of town we desire, and contractors usually scoop the parcels of land up when they do. I’d rather not be beholden to any one contractor.

I’ve pegged our odds at finding the right place in our current town 50-50 at best. If that fails, the fallback position is to buy a house that is is disrepair but has good bones on the cheap, rip it down to the studs, and fix it up. The problem with that, however, is there aren’t a lot of ranches in our town, and this might actually cost more than building from scratch. So we search, wait, and hope something will emerge. As a last resort, we may have to expand our search to neighboring towns, but would first have to decide if that would be better than staying in town and settle for something less than perfect. Hopefully is doesn’t boil down to that.

They say patience is a virtue. We’ll see. Hopefully, a parcel will become available and we’ll be able to build the house we want. A nice view would be a bonus.

 

 

 

 

 

 

Sunshine and Rainbows

rainbow

I was taking inventory and skimming through the last few blog entries and almost depressed myself. “What a downer,” I thought, and was not pleased at the subliminal tone I felt I was portraying.  Not because what I’ve written isn’t true or honest, but because the mood of these entries struck me as sad, bleak and foreboding.

That was never my intent, you see. I want to convey my reality honestly, and not pull any punches in describing how hard and frustrating dealing with a disability can be. However, there is a yang to every ying, so I also wanted to convey that there has been a healthy portion of good that has been served with the MS. I saw that I may have strayed from that the last several weeks. My bad.

Now you may think, what good could possibly come with dealing with a condition that has turned out to be a lifetime sentence?  The answer is plenty, but you have to look for it because they are often little things, and they are often fleeting.

What has come through loud and clear in the ten years I’ve dealt with this, is that most people are good, kind and caring. That may be hard to believe given the events that have taken place across the globe and in our country, and the general mean-spirited vibe you get from watching and reading the news, or surveying our political landscape. I don’t deny that exists, but I believe it masks the true nature of the human spirit that I have personally experienced and witnessed through frequent acts of kindness and empathy.

These shine through in small gestures, like people opening doors when they seem me coming, or offering to help carry things if they see I’m struggling. We live in a very impatient world, where we get annoyed if our computers don’t boot up immediately, or if something we are streaming takes a few extra seconds. But people I’ve encountered don’t seem to mind waiting at the door for as long as a minute to open it for me when they see me limping their way, or offering an open seat on a crowded subway when it becomes available, even through they may have been standing longer than I have. And these are complete strangers.

Colleagues have taken it upon themselves a number of times to stand in long buffet lines to gather a plate of food and walk it to my desk without being asked (probably because they know I won’t) so I would haven’t to negotiate that distance or balance a tray of food in one hand and my cane in the other.

There are more examples I could provide, but you get the point. These small acts of random kindness, which occur almost daily, have renewed my faith in people and re-emphasized what I have always believed: despite our differences, people are generally good and kind in spirit.

The ironic thing is that, in all likelihood, this type of activity has always existed within my orbit, but I was too engrossed in something else to care. Now that I have to be aware of everyone and everything around me, it is as obvious as the nose on my face.

It’s a pity it took something like MS for me to appreciate it.

 

 

MS and Stress

alarm clock

Stress is a reality everyone endures in their lives and the triggers are numerous. Finances, kids, marriage, relationships, career, politics, love, hate, death and religion are a few that come to mind.

The issues that create stress in our lives are as unique as how MS affects us as individuals. What bothers you or causes pain in your life may bother me a little or not at all, and visa versa. Having said that, I think we can all agree that living with a chronic condition qualifies as a huge stress inducer. The ironic thing is that stress is one of the worst things possible for people with MS. But how can you avoid it?

Starting in 2005, I endured a two year period of intense and constant stress.  Up until then, I had been pretty good with managing stress and not letting it affect me, but what was unique about this siege was there were a handful of fronts I was battling simultaneously, and they were all hot button triggers for me. I could feel the stress consume my mind and body, but failed miserably in combatting it, or at least in taking better care of myself. Shortly after this battle ended, the symptoms appeared, never left, and I was diagnosed.

While I can’t prove clinically or otherwise that this caused my MS, I believe it to be true with all my heart. At minimum, it was a major contributor.

Once the symptoms impacted my daily life to a significant degree, I stopped stressing out about a lot of things. The fact that, unlike many people with MS, I don’t live in chronic pain, am not confined to a wheelchair, and am not struggling to make ends meet because my condition doesn’t permit me to work or perform well at my job, certainly helped. How can anyone not be frazzled by having to endure that? My symptoms are annoying, severely limit what I can do, and have forced me to change a lot in my life, but I don’t live with that kind of fear or torment. My reality gave me a very different perspective about life, and made a lot of things that used to bother me feel trivial and unimportant.

Don’t get me wrong, I’m not Mr. Cool, Calm and Collected. A few things remain that I get stressed over, stubborn remnants of my core personality. The one thing I know for sure is that when stress begins to pluck my nerves, my MS takes notice. Stress exacerbates my symptoms, and I can feel it happening. My leg feels flushed, as if what little strength remains is being drained. The limb dangles, flops, and sometimes feels like it doesn’t even exist. I feel like an amputee whose prosthesis is missing, and I have to get from point A to point B without anything for support. When this happens I find a place to sit, close my eyes, and try to focus on my breathing until I can feel by pulse subside and body relax. Normal feeling usually returns shortly thereafter.

Obviously, dealing with PPMS has added to my list of stress triggers, but not in the way you might think. I don’t stress over wondering about how I will feel a year, five years or ten years from now, if I will be confined to a wheelchair, if it will spread to other parts of my body, or if pain will begin to have an intimate relationship with me, because I honestly don’t think about that stuff. Not very often, anyway.

What bothers me is the wondering. What gets my mind going is when I feel something I haven’t experienced before, and wonder if this is the start of what will take me down one of those paths.

I don’t know a lot about RRMS because I never had to deal with it. What I know about that strain is from what the people who do have it tell me, or from what I read. And from what I gather, when a flare is underway, it is as subtle as a sledgehammer. There is no debate or question about what is going on. It is crystal clear and obvious.

My PPMS was never like that. My flares aren’t flares in the typical sense, but are often a subtle loss of function that becomes permanent. For me, it has been a slow and gradual process. The problem is, everyone has more aches and pains as they get older, or develop something that is more age-related than anything else. So if you get a twinge here, or something feels funny there, it’s hard not to wonder whether or not it is MS related.

When I’m on my feet a lot, walk a lot, or do some physical work outside, it isn’t uncommon for me to lose feeling in my toes, have my hip or back ache terribly, or have the leg feel like mush. If that feeling lasts longer than usual, my mind immediately wonders if this is the beginning of something bad. My rational mind is saying, “now Steve, this happens all the time. Take a chill pill and ride it out. You know how this song goes.” However, my emotional side doesn’t want to hear that. It wants to hop on the panic slide.

If you have read this blog, you know that I’m pretty good at compartmentalizing things, and so far I’ve done a good job at not taking the full ride on that panic slide. Maybe that’s because nothing catastrophic has occurred. I’ll lose a small piece of something, mourn it, say oh well, it could be worse, them move on.

Recently however, I can’t escape the nagging feeling that the progression has been moving a little faster than in the past, and worry that this might become a trend.

Last week, I described my travel adventure, and the one take-away from that trip is that, in all likelihood, I will avoid those kinds of meetings again. The facility was too big and spread out, the distance from my room to all of the meeting and gathering places was significant, and those excursions had to be made several times a day. I also had a much harder time negotiating big crowds. You see, it is really difficult to have a cane in one hand, a drink (or food) in another, and negotiate a sea of arms, legs and bodies belonging to people who are enjoying themselves and aren’t aware someone with terrible balance is nearby, and that bumping into him by accident could cause an embarrassing scene. Why should they? As a result, I stayed in my room more than I had in the past.

So, I’ve decided it might be better to connect with friends by going directly to their home towns, or having them visit me, instead of dealing with the obstacles last week presented. I can manage the airports. It’s the other stuff I can do without.

Here’s another example of why the progression train might be picking up steam. There are a few interior and exterior doors in our house that need repainting, and painting is one of the few things I can still do, and I enjoy doing it. But over the last few weeks, I’ve noticed painting isn’t as simple as it once was. Bending, squatting and twisting to get in a corner, or reaching up to get a high spot, take a lot more planning and effort. The task it is harder to complete, takes longer, and isn’t very enjoyable. That really sucks.

Have you ever woke up at night, not know what time it is, and heard the tick, tick, tick of your alarm clock? You can’t see what time it is, can’t remember if you set the alarm, and wonder when or if the alarm will ring. This describes the way MS causes me stress.

Do the episodes I’ve described mean this is finally it, that I’ve hit the downhill side of my MS curve? I hear the ticking, but I’ve been aware of the ticking the moment I started taking the hard-core meds. What drives me nuts is wondering if all this this means that the alarm to my personal Doomsday Clock is going to ring soon.

I certainly hope it doesn’t.

 

 

 

 

Traveling With MS as My Companion

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I love to travel.

While I have never traveled outside the US, I have visited most of our states, and most of our major cities. I enjoy getting away, seeing other parts of the country, and appreciating how vast and beautiful our land is. When I am on a plane, I love looking out of the window seat at the vast expanse passing underneath on a clear sunny day, or witnessing the spectacle of flying over a city at night, taking in the lit landscape like a young boy gazing at a glorious Christmas tree. As an experienced air traveler, I have learned a lot about what not to do in terms of booking, connection times, how long it might take to get through security, and things of that nature.

Over the last few years the amount of traveling I have done has reduced significantly, not because of my MS, but because the opportunities aren’t as great. The only accommodation I made because of the MS was to arrive at the airport earlier and to give myself more time between connections, because rushing though the airport to make the connecting flight is impossible. Aside from those two changes, my game plan when it came to negotiating the airport, and general attitude regarding air travel, had not changed, until today.

Subconsciously, I knew that when the symptoms slithered into my knee, it was a game changer. After all, I have documented that it is harder to walk, and that my balance is significantly worse in previous posts. I was curious how or if it would change my airport experience in the days leading up to this morning’s excursion from Connecticut to Nashville, Tennessee. In my self proclaimed state of denial and stubbornness to plow ahead and not worry about the consequences, I vowed not to change a thing regarding my airport game plan in advance of this trip. Then, my wife asked this question, although it was really more of a statement: “You’re getting wheelchair assistance this time, aren’t you?”

When I booked the flight months ago, I declined that option, perfectly content to muddle my way through security, and be the first on the plane. But she wouldn’t let it go, so I thought about it and decided, why not? But honestly, I only relented because of the two braces that span my toes to upper thigh, and the hassle they might present going through security. So screw it! If it makes getting through security easier, I could temporarily swallow my pride.

I am so glad I listened to her, for a number of different reasons.

The first thing you need to know about our airport, Bradley International, is that it is not huge. Early morning, which is when I arrived, is the worst time to be there because of all the business travelers getting out on the first flights of the day. And this morning’s crowd was no exception. In fact, it was probably the busiest I have seen it in years. Lots of people, and lots of long lines.

But when I entered the airport today, I knew something was different. Pulling the rolling suitcase behind me was infinitely harder because I had to zig zag through the mass of people, and with my balance, I don’t zig zag very well anymore. After I gingerly made my way to check my bags and drag them to the X-ray machine, I parked myself on a chair, and gratefully waited for the wheelchair attendant to arrive.

The first thing I noticed after I requested wheelchair assistance was that my boarding pass was marked TSA pre-checked, which allowed me to bypass those long lines. As we weaved our way through the throng, I was happy that I didn’t have to get caught up in that mosh pit of humanity.

Going through security was easier for a couple of reasons. The first was that even though they had to wand me, given my leg was encased in metal, I didn’t have to fret over my wallet, watch, and other items being left unattended, because my wheelchair escort grabbed them for me while the TSA agent was doing their thing. The other reason was that, in my opinion, the TSA rep was, well, nicer. He did his job quickly, and got me out of there faster than the previous times I went through the process without the wheelchair. Maybe it was my imagination, but I felt a lot of empathy.

I didn’t really need the chair to get to my gate after I was through security, but I have to admit it was nice not having to walk that distance. This was further illustrated when I got to O’Hare, and walked to my connecting gate. I wasn’t in a hurry, and I could have waited for the wheelchair to arrive, but I chose not to. The trek took a very long time and I felt something I never experienced in an airport before: vulnerability.

You see, people inside an airport are clueless. They wander around, either looking at their phones, looking for their gates, looking for something to eat, somewhere to sit, or rushing through the crowd like a running back picking a hole to run through, and they are all oblivious to who or what is in front of them, in back of them, or around them. That is not a good feeling for someone with balance issues, so I simply steered to one side of the terminal and stopped or slowed down when someone threatened to invade my orbit, using my cane to secure my space if necessary. It felt like walking through a mine field.

Fortunately, the agent at my connecting gate told me a wheelchair would be waiting for me in Nashville, so I knew I wouldn’t be tempted to hoof it on my own when I arrived. It was a good thing too because while there were nowhere near as many people as there was at O’Hare, the walk was just as long, had more inclines, and the floor was carpeted, which tends to grab my foot more.

By the way, is it me or does it seem that the airport wheelchair attendants tend to be older, or smaller of stature? While I am average concerning height and weight, I am certainly not a lightweight, and felt bad for the two that got me because they had to strain a few times to get me where I needed to do.

Another thing that was different is that getting in and out from the window seat for a bathroom break during the flight was much harder, having to grab and hold onto the head rests on the seats in front of me to stay upright. Maybe I am going to have to get aisle seats from now on. And once I got to the aisle, the journey to the bathroom felt a lot more wobbly than it ever used to, and the aisle felt narrower. My hands were always on the seats on each side of the aisle because if we hit unexpected turbulence, I know I would have fallen across someone’s lap. I never felt that way before.

Getting on and off the bus that served as the shuttle to my hotel was harder, and as we approached the Opryland Resort, the bus driver described it as 57 acres under one roof and instead of thinking that was really cool, it seemed like another obstacle to contend with.

The fact is, it has been a year since my last trip, and everything is harder. When I was at the same meeting in Vegas last year, everything was just as spread out as it is here, and there was as much if not more walking inside the facility. But the difference between this year and last, is that last year I viewed that reality with a “no problem” attitude. This year’s attitude is more like “oh shit!”

I will never get on an escalator again with luggage in tow because I have one hand on the cane, another of the luggage handle and, unfortunately, no third hand to grab onto the escalator rail. Not a smart move for someone with balance issues. Nothing bad happened, but I would be lying if I said I wasn’t nervous. Why I didn’t look for an elevator is beyond me. That won’t happen again.

Now that I am here, I am sure I will enjoy my time in Nashville, but I know there be a lot of walking and standing, and I suspect that will take more effort than it used to. Then I will have to endure the return trip home. When I reflect on this trip once I am home, I doubt it will squelch my desire to travel again, but perhaps I will have to be more selective regarding where I travel to, or when my flight departs.

The one thing that I do know is that MS has definitely invaded the ease in which I used to travel, and that with time this will become harder. Perhaps a point in time it will come where traveling will become impossible.

And that would be a very sad day.

Balance

Balance

 

If you look up the word balance in the dictionary, you will find a variety of definitions and meanings, but there two in particular that interest me the most.

The first one, which applies to me specifically (and perhaps many of you), concerns physical equilibrium: an even distribution of weight enabling someone or something to remain upright and steady.

Of all the difficulties MS has presented, this one has been with me like a shadow from the beginning. At first, the shadow was small and barely noticeable. Now it is large and long, like those that  trail you when the sun is low in the sky towards the end of the day. This has also provided the biggest challenge I’ve had to deal with over the last ten years because, slowly but steadily, my balance has become more tenuous.

In what seems like a lifetime ago, I was a member of my college’s modern dance company. My motive for joining this group during my freshman year was to become more flexible and stay in shape for the upcoming baseball season (and to meet girls, I must confess), but I learned to enjoy the movement and creative aspect of the art, and stayed with the group through my senior year. During this period, I learned a lot about body mechanics, and this knowledge has become invaluable as my balance has eroded. One thing it did, although I didn’t realize it at the time, was teach me how to fall and roll without hurting myself. Needless to say, that has become a very useful skill. I also learned the secret to staying upright.

Marcy Plavin, our company’s director, always urged us to “find our center,” primarily because it provided a better form on stage and made our movements crisp and clean. Now, staying grounded in my center is what allows me to avoid crashing to the ground when my delicate balance is disrupted.

In general terms, my “center” is that spot just above the middle of the pubic bone, and I try to always keep my weight focused on that single spot. This isn’t an issue when I’m on flat terrain, because my body isn’t tilting in any specific direction, and my weight naturally settles there. It’s a different story, however, when I’m on terrain that is sloped, slanted, or flat but bumpy.

First of all, if my foot catches something, regardless of the terrain, it’s a recipe for disaster if I’m not aware of where my center is. Should I lurch forward, I can, with the help of my cane, quickly reorient myself and reestablish my center. As a result, my cane, which was once something I used occasionally, is always in my hand outside of the house. Otherwise, gravity will take over in these situations. I also need to be constantly aware of how my body is positioned, and instinctively react the moment my balance is compromised.

What is weird and infuriating, is what sometimes happens when I’m not moving.

If I’m on flat terrain and allow my mind to wander, I can sometimes stagger sideways if I unconsciously lean to my right. I’m sure this looks bizarre to anyone who witnesses it. They’d probably think I was hopelessly drunk or on something. While this rarely occurs, it does happen.

Most of the dangers that await me are outside of my home, and my yard is a prime example.

My house sits on a hill, and the downward slope has become increasingly difficult to navigate. Part of it because my foot drop has become so bad, that my foot is constantly getting stuck in tufts of grass. As a result I’m literally taking one step at a time, like an inch worm, when I’m out there. But I’ve also had occasions where I’m standing still, not moving at all, and still almost keel over. This used to happen only when the downward slope was on my weak side (the right), but I learned to manage this by transferring the cane to that side to have something to hold me up if I felt myself tipping in that direction.

Recently, going up a particularly steep grade has become treacherous. I have to force myself to lean forward when the slope is behind me because if I don’t, I can sometimes tilt backwards. Should this occur, it is the one and only scenario where I can’t recapture my center. This has occurred a few times, particularly around our pool that sits on a mound that has a short but steep pitch. When I’ve felt myself losing my center while standing on that slope, panic instantly sets in for the briefest of moments because I know that if I reach that point of no return, I will tip backwards, I won’t be able to brace my fall or protect myself, and could really wind up getting hurt. Fortunately, that hasn’t happened yet.

And this is during the summer, when the ground is warm and dry. I hate to wonder what the winter will be like.

To illustrate how silly this has become, even the act of correcting my posture, particularly if the motion is quick, sharp and I’m not holding onto a cane, or aren’t near a wall I can brace myself against, can cause me to stagger backwards.

The bottom line is that MS has stolen my physical balance, and has made it something I constantly have to battle to achieve a stalemate. It is the reason why negotiating stairs requires my full attention and concentration. It’s also the reason why the simple act of walking and standing has become a competitive sport.

The second meaning, which applies to us all, concerns mental and emotional steadiness: a condition in which the competing elements of our life are in equal or correct proportion.

This type of balance is the most difficult for me. Specifically, where is the line between being smart and taking care of myself, and giving in or giving up? Where is the line between between being cool and rationale about the disease and its future implications, and focusing too much on them and panicking? Is it better to stick your head in the sand and not worry about the what-ifs until you’re forced to, or to always think about them and plan for their eventuality. Do I need to concern myself with the prospect that all the drugs I’m taking could potentially shorten my lifespan, or is it better not to think about that at all, to focus instead on the quality of life, and how things are in this current moment?

I have my own answers to these questions and navigate according to that compass. I think I do a good job of maintaining an even emotional keel, and not get too high or too low. One could argue that I don’t take my condition seriously enough, but that’s how I roll.

What I  struggle with the most is the proper balance between sharing the fears I do occasionally have with my family and loves ones, and keeping them  to myself, which is my typical MO. After all, there isn’t a thing they can do to improve my condition, and sharing too much might unnecessarily worry them more than they already are.

But is that being selfish? Is it better to let them in on the secret that I am sometimes afraid of  where all this might lead? That I’m terrified of potentially living in a body held prisoner by this relentless beast, and of having to become completely dependent on them for everything? The thought that one day I might need help getting dressed, eating, bathing or going to the bathroom is my skeleton in the closet. Honestly, that isn’t living, it’s existing, and I don’t want any part of that. That, and the possibility that my condition will become a financial sinkhole that will destroy our financial security, is a cross I don’t want to bear.

I don’t obsess about these things, but they exist. I don’t dwell on them because doing so would destroy that emotional scale, tilting it heavily in the wrong direction. Maybe that’s why I try to keep them at arm’s length, in a blissful state of denial. I own this and keep it to myself because emotional balance is a very delicate thread. One unfortunate tug could unravel everything.

And that doesn’t help anyone.

 

For those of you who follow the blog, I will be away on a business trip next week and may not be able to submit what up to now have been weekly posts. Expect the next post to appear in two weeks