Tell Your Mind to Shut Up

scream

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.

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.