Month: November 2018

The Art of Falling

fall down

Something rare occurred Thanksgiving morning. I was outside, trying to pry some carrots out of the suddenly frozen dirt of our garden, when it happened.

That section of the yard is slanted, and has always been a treacherous tract for me. Perhaps it was because the ground I was standing on was hard, lumpy, and I couldn’t get a good foothold when I felt my balance shift. Whatever the reason, my bad foot got caught as I was shuffling to my right, my ankle turned, and I was confronted with two choices: stand my ground and risk the full brunt of my weight collapsing on the ankle, which would have resulted a moderate sprain at minimum, or save myself from imminent injury, let gravity do its thing, and let myself fall to the ground. It really wasn’t much of a decision. I stopped resisting and let my body fall.

I wouldn’t say the fall hurt, although it was definitely not a soft landing, and the ground’s rock hard surface did scrape up my right shin a bit. But when my rolling body came to a stop, I reached for my cane, which I relinquished when I stooped over to break up the garden’s surface, clumsily got back onto my feet, and anxiously looked around to see if there were any witnesses. There were none, and I resumed my task. Ten minutes later I was back inside, free from the sub-freezing temps and whipping winds that made the wind chill feel like it was below zero.

The tumble was fairly benign, and the only souvenirs that remain from the episode is a dime-sized scab on my shin and a bruised ego.

Falling is not uncommon for people with MS, and I am no exception. I don’t fall often, averaging perhaps two or three times a year, but it was not always that way. As I rose from the ground and got back onto my feet that freezing Thanksgiving morning, I couldn’t help but reflect that the reason I usually don’t fall very often, or get injured when I do, is because of body awareness and mechanics.

In what seems like a lifetime ago, I joined our college’s Modern Dance Company at the beginning of my freshman year. I had never been involved in this kind of performance art before, but I liked dancing, and I thought it would achieve two important priorities: meeting girls and becoming more flexible. The first priority is self-explanatory, but I had planned on going out for the varsity baseball team later that spring, and I thought being more limber couldn’t hurt.

One thing that my four-year experience with the company taught me was general body awareness: specifically, how it moves, how it is positioned at all times, and where everything is centered. Our company’s director always used to implore that we “find our center” during the first half hour of each class as we stretched, and the lessons learned from those four years have been invaluable to me on the occasions where I do fall.

After the first few tumbles, which were a complete and unexpected surprise that left physical marks, I realized that I needed to become more aware of how my body was centered at all times, which in turn allowed me to apply those lessons. The results were twofold.  First, the number of  falls dramatically shrank, and when I did fall, I was able to protect myself from serious injury by positioning my body in such a way that I was able to cushion the blow of hitting the ground.

How does it work? I try to be aware of my center, and therefore my balance, whenever I am on my feet. Why? Because if I lose my center, the balance of my weight shifts, which makes my body lean in different directions. When the upper half of my body leans too far forwards, backwards, or to either side, my balance is shot I down I go like a sack of potatoes. Being aware of when I am reaching the point of no return has prevented more falls than I can count, but like last week, they do occasionally occur.

This is where the other part of body mechanic awareness comes in. Before I hit the ground, I try to turn my upper body sideways, exhale, relax the muscles and get into a quasi-fetal position, all within a split second. The goal here is to fall on my side, saving my teeth, facial bones and other joints in the process, in addition to not having the wind knocked out of me when I hit the ground. With the exception of one time many years ago, when I missed the last step on my back stoop with food containers in my hand, I’ve been pretty good at avoiding these kinds of disasters. The back stoop episode occurred during a cookout when my parents were around, and my mother, who had never seen me fall before, nearly freaked when I hit the ground. Nidan, who was maybe ten at the time, thought it was the funniest thing he ever saw, but that is a different story.  That particular crash was the only time I can remember where I wound up with impressive bruises and multiple road-burn type abrasions. It could have been much worse.

I’d rather not fall at all, obviously, but they are inevitable, and when they do occur I would much rather have the fleshier body parts absorb the impact. So far, I’ve managed to avoid anything catastrophic, and hope to keep it that way.

Having said that, all bets are off if you lose balance on the stairs. This has been and always will be my biggest fear, because a soft landing is impossible in that scenario, and it is vital that anyone with balance issues be aware of their body mechanics every time you step ono them, especially when you are going down the stairs. Otherwise, the results could be catastrophic.

This doomsday scenario almost happened to me last August, when I was going down the stairs in the grandstand section at Fenway Park. If you know Fenway, there are at least thirty concrete steps that begin at the top of the grandstands and proceed all the way down to the loge box area.  Instead of taking the longer route, where I would enter the seating area at the bottom of those steps and go up to my seats, I was lazy and decided to take the much shorter route to my seats. This meant I entered my section of the grandstand from the top of the steps and worked my way down to the seats, which were about fifteen steps down.  There are no rails to grab onto for support, and after a couple of steps, my knee locked, my body lurched forward and I felt myself careening forward. I remained upright, but had lost complete control for three or four steps, and understood that in a few seconds a bad scene would unfold.

I remember thinking that this was going to really hurt, that something was going to snap or break, that blood would spill, and I would be humiliated in front of hundreds of people. Fortunately, Zorro, my trusty cane, landed against one of the metal seat legs that was anchored in the concrete. This slowed the momentum to the point where I could grab the top of an empty seat. My hip dug into the corner of that seat with he full weight of my body behind it, which stung like hell, but it stopped the fall, and was infinitely better than hitting those concrete stairs and rolling down God knows how many steps.

My recommendation to those of you who are susceptible to falls is to stay in the moment and be generally aware of your center at all times, which is right around the navel area. If you can keep your weight and balance centered on that point, you won’t fall very often. And if you do, you will be more aware of what is occurring and hopefully be able to position your body so you don’t get hurt when you hit the ground. If you can manage this one time, it will become second nature, and it will go along way in preventing this (or worse):

cast

And please focus on each step whenever you are on the stairs, or avoid them altogether. One of the things I am most looking forward to in the new house is everything is going to be on one floor. That will be one less hazard to deal with.

 

Measuring Stick

ruler

Winter has arrived early in New England this year. Last Thursday, six weeks before the official start of the winter season, about six inches of snow fell during rush hour, paralyzing traffic and generally raising hell with our psyches. This was followed by a period of cold rain, which left a slushy mess the following morning, and a period of much colder than normal temps that were made worse by a constant breeze. More measurable precipitation is in the forecast during the next twenty four hours, and Thanksgiving temps are supposed to be what one would expect in January. Swell.

I mention this not because I hate winter, as you have probably figured out from all the posts I wrote  last year. Nor am I writing about it because this has my nerves on edge because of its potential to raise some serious hell with our building timetable, which I will discuss in a future post.

No, the reason for pointing this out is because of what I have learned from our premature winter experience.

I don’t think my MS progresses in a typical way. Although get I flares from time to time, where something is noticeably different that does not go away, these are rare occurrences. I can count the number of times these have happened over the last eleven years on one hand. The best way to describe the nature of my progression is to use the following anlogy.

Imagine a river that runs through an unpopulated, densely wooded area that you can reach via a hiking trail. At the end of the trail, which is a scenic area, you look down about thirty feet and see the river carving it’s way through a rocky terrain. If you visit this place frequently, the sight that greets you down below doesn’t appear to change. But if you make the trip once every one or two years, you notice the erosion that the water caused since your last visit. The river is noticeably wider, and covers more terrain than you remember seeing the last time you were there.

My progression is like that. It isn’t noticeable from day to day, but every year one event takes place that clearly illustrates a progression I was not aware of, and last week’s snowfall was one such event.

Even though last week’s temperatures were the coldest of the year, they were in the low to mid forties during the day, which meant there was a lot of snow melt. While this stuff didn’t completely freeze until the sun went down, the driveways and sidewalks remained slick in isolated areas during the day. I’m always aware of the surface conditions during the winter because the last thing I want to happen is falling hard and braking something in the process, and last week was no different. I was very careful and methodical when I ventured outside, but even so, it became obvious that there was a big difference negotiating this terrain compared to the last time it snowed in March.

Moving on the slick and almost frozen surfaces was noticeably more difficult and treacherous. The most pronounced difference was my balance. More specifically, the lack of it. I could feel myself tottering from side to side, the leg always on the verge of sliding out from under me, even with a cane in hand. What I couldn’t determine is if the worsening balance was the result of less strength in the leg, or if the leg felt weaker because my balance sucked so bad.

All summer I thought I had achieved a lengthy period of status quo, and that if any progression had occurred it was minimal at worst. After all,  I hadn’t curtailed my activities, and hadn’t come close to falling even once.  I felt like I might be a little sturdier on my feet, and entertained the notion that perhaps my symptoms had actually improved, which would have been a first.

If last week didn’t hammer the point that the progression continues to stealthily advance, the shingles vaccine certainly did.

During my annual physical last summer, my primary care physician suggested I get the vaccine, explaining that while shingles is something nobody would want to have, it would be exponentially worse for someone with MS, so I consented get the shots.

The vaccine is administered twice over a three month period, and about half of the people who get it, according to Dr. Google, experience flu-like symptoms. After the first dose, I felt punky the following day but could still function at work. I received the second dose on Monday, and yesterday it kicked my ass. I literally felt like I had the flu: exhausted, body aches, fever. You name it, I felt it.

The last time I actually had the flu was years ago. I remember having a harder time getting around, bending the leg, and things of that nature, but on a scale of one to ten, with ten being the worse, I would rate the impact on my symptoms at a three or four. This week the impact was more like a seven or eight. I don’t know if it was simply the stuff in the vaccine that made things feel worse or if it was the progression of the MS, but it was infinitely more difficult to bend the leg, support my weight, and generally stay upright or move.

So it turns out I was naïve in thinking that I was actually improving. I’m not complaining, mind you, because in the scheme of things I am still doing well. But these moments can’t help but make one wonder if and when the hammer will come down at some point and take away all my mobility in one massive blow.

This possibility has always been there, but I have kept that thought locked away in the far recesses of my mind. These measuring stick moments, however, make me wonder if that doomsday scenario it close at hand,  or if this will continue to be a slow bleed.

These next few months should bring more clarity to that question, as the house gets built and we put some sweat equity into the place to save some money. That experience will either kill me or cure me, so stay tuned.

Meanwhile, I wish you all a Happy Thanksgiving.

 

Perception vs. Reality

reality

“I wonder what people think when they see me.”

That was a common refrain of mine once the symptoms became entrenched and my mobility became compromised. I was never one who liked to stand out in a crowd, preferring instead to blend into the background. MS made that impossible. My inability to walk in a straight line, my tendency to thrash my arms about to maintain balance before the cane became a constant companion, and the frequency in which I would stub my toe and stumble forward because I refused to slow down, made it feel like the  white hot spotlight shone on me whenever I was in the public eye.

The idea that people made assumptions because of the disability used to really bother me, and on the rare occasions where I actually fell in public, I wanted to dig a hole and bury myself out of sight from those prying, judgmental eyes.

I don’t feel that way anymore. Quite frankly, I don’t care one iota what anyone who doesn’t know me thinks when they see me struggling. Having said that, not caring isn’t the same as not being curious, because I still sometimes wonder what a person’s perception is the first time they see me.

What do they see? What do they think? Are they sympathetic? Are they afraid? Do they think I’m a freak? Perhaps they are so wrapped up in their own heads they don’t notice me at all.

I try to think back of what my reaction would have been when I had an uncompromised body and was the one observing someone like me today. In all likelihood, I would have given them a casual glance and not give it a second thought. Perhaps I would have wondered what their story was, but would have spent maybe ten seconds pondering that question before focusing on the task at hand. Any thoughts I may have had would have evaporated, just like deleting an obsolete file from a computer.

I was self conscious at first because I wasn’t comfortable in my own skin. Not wanting to appear weak or unsure of myself, I worried that the image I projected made that impossible. I was also hung up on the primary progressive label attached to my MS, which convinced me that I was going downhill fast, which only fed my insecurity.

The most intriguing aspect about having a chronic illness or disability is that you learn a lot about yourself. My self-esteem from a physical perspective was shattered, but over time I learned that physical appearances and ability are not what defines us, although it’s a pity it took something like MS for me to realize that. What I also learned is that that my priorities were wrong.

Career and money were very high on my list, you see. But of all the humbling realities something like MS forces upon you, the one true gift it provides is perspective.

In hindsight, I think family, friends and health were always important to me, but not like they are today. My career had to take a hit because I couldn’t physically handle the stress and demands of the position I was in, and with that came a loss of income, which really freaked me out because the fear of being broke had always been my Achilles heel.

But I was fortunate enough to land in a place where over time I was able to recoup that temporary loss, and the reality of not having to deal with all the crap that comes with  being a boss in a middle management position was an unexpected bonus. My ego took a hit at first, but that soon faded as the amount of stress I endured in the work place shrank to practically nothing.

Not having the work distractions I was accustomed to for over twenty years, in addition to having diminished physical abilities, made me appreciate and understand how important family, friends and health were. It’s a cliché, I know, but when your health is compromised, material things don’t matter. What matters is the love and the people in your life.

That epiphany allowed me to step back and reassess where I was and where I was going. Many of the little things that used to concern me fell by the wayside. One of those, although it took some time for me to get there, is that strangers’ perceptions of me were unimportant.

It helped that what I thought “progressive” meant in terms of how quickly my physical ability was going to deteriorate didn’t materialize. Remember, this was almost eleven years ago. I thought that by now I would be unemployed, wheelchair bound, on disability, in searing pain, and unable provide for my family the way I was accustomed to. So I am lucky in that respect.

But the not caring about what others might think evolved because I learned how mentally tough I really was. There is a line in the Shawshank Redemption, where Red talks about his future and the two choices before him: get busy living or get busy dying. I chose the former.

Self-pity wasn’t something I was going to indulge in. I was going to do whatever it took in the way of treatments, drugs, diet, and things of that nature to keep the progression at bay and live as normal a life as possible. I wasn’t going to let MS rule or define me, and a rebellious nature I never knew I had bubbled to the surface. Of course, I’ve fallen a few times, literally and figuratively, but for the most part this has served me well.

Maybe attitude has nothing to do with this. Maybe I’ve been lucky in that the progression hasn’t accelerated like I thought it would. I still think there is a very good possibility what I feared in the beginning will eventually occur, but I was planning on pulling the plug at work in five to six years anyway. I think I have that many good years left. Probably more, if I’m honest.

Having said all this, I still wonder on occasion what people think when they see me, but not for the same reasons I did eleven years ago. I’m curious because I’d love to know if their perception matches my reality.

I seriously doubt it.

 

Oz Update

blimp

I took the plunge last summer by enrolling in my state’s medical marijuana program, and shared the experience from a variety of perspectives here, here, and here. Close to four months have elapsed since then, and I’ve learned a lot about the various products and what works for me. I’m at the point where, although I am certainly not an expert on the subject, I can share and speak intelligently about my experience. Perhaps it might come in handy if this is an option you’re considering.

Why has it taken four months? Because the volume and variety of products to choose from is vast, and I wanted to try several to see what worked best for me. I was a blank slate in the beginning, but through trial and error I am finally at the point where I feel like I know what I am doing. The bottom line for any person dipping their toe into this pool is the two most important factors you need to consider before selecting the  product you want to try is the buzz factor, and how you want to consume the product.

Each item on the menu I choose from lists how much Cannabidiol (CBD) and Tetrahydrocannibinol  (THC) is in the product.  You can obtain products that have more of one than the other, equal or close to equal amounts of both, or all of one and none of the other. Because CBD isn’t psycho-active, it’s legal almost everywhere. In fact, my masseuse offers CBD oil as an option. Technically, weed without THC is not considered cannabis, but hemp. THC, on the other hand, is what drug tests are trying to detect, and is what creates the feeling of being high.

So, decision number one should be whether or not you want the feeling THC provides. A glass or two of wine may provide more of a buzz than items with a low THC content, but I don’t know what that amount is. In my case, I like the feeling THC provides, which I have termed “cruising with the blimp.” It makes listening to music, watching television and sporting events, specifically the just completed World Series, more compelling. Writing on the stuff is interesting too.

So yes, I enjoy the buzz, but only to a certain degree. I remembered that too much THC can create a sense of anxiety and paranoia, at least for me. This was a non starter because one of the reasons for taking MMJ was to reduce my level of tension and anxiety. I wanted something with a decent amount of THC, but not so much that it could become problematic. So I had to find that happy medium.

This is where the type of product comes in. The only item off the table from the start was the pre-rolled items that one smokes. Ours is a smoke-free house, and I have a twenty year old at home who is definitely not pro-drugs. The last thing I wanted to do was act like a felon, sneaking away somewhere to fire up a doobie. Besides, the smell lingers on clothes and skin. There was also the issue of what smoking could do to my lungs, so you can see why this option was never considered.

Instead, I have tried three categories of MMJ over the last four months: vaping products, something called sub-lingual strips, which is a small square that dissolves under your tongue, and edibles. The edible I used was honey, because it was something I could easily hide. I avoided the other edible options, (cookies, brownies and granola) because they were a lot more expensive, dosing was trickier, and I could see Nidan, who is a supreme mooch and excels in finding hidden treats, unearthing my stash and eating everything in one fell swoop. Nor did I employ the creams or topical balms, primarily because I didn’t have joint or nerve pain, and assumed it wouldn’t do anything for me.

I started with the vaping stick because it was affordable, and I could easily control my intake, and therefore the high. I tried the other products because I didn’t think there was any difference as far as my lungs were concerned between vaping and smoking, but finding the proper dose for the other product types was challenging.bitter The sub-lingual strips, which have a strong peppermint flavor and taste like shit, don’t provide much in the way of relaxation unless you consume the entire square. Since there are only ten strips to each container, that becomes expensive very quickly.

The honey, which was the priciest item of the bunch, was the most difficult to dose. A half a teaspoon didn’t do anything, and a heaping teaspoon turned out to be too much. Too much in the sense that the high was too strong, the paranoia would come and go in waves, and I often felt like I wanted to crawl out of my skin.  The other issue with edibles is that they take longer to work, because the components need to be digested before they are released into the bloodstream. But once the “high” came, it took hours for it to leave. You see, when you smoke, vape, use a spray or a topical cream or ointment, 100% of the product is not consumed. That isn’t the case when you eat the product. The impact is therefore more dramatic when it hits, and it takes a lot longer for the THC to leave your system.

So I am wedded to the vaping for now. These come with a wide selection of THC content, which is nice, and I can easily control how much I ingest, which means I have more control over the effects of the medicine. The downside to this method, besides the fact that I’m putting something in my lungs, is that the effects aren’t as long-lasting, so I tend to consume more of it. But it is also the most affordable option I have tried, so it does not break the bank.

I can see myself keeping some of the honey available for future use, in addition to the strips, if for no other reason than to have a little variety. The bottom line is this is now part of a my night-time routine. I am not as uptight as before, my leg rarely twitches, I sleep better, and rarely wake up before the alarm rings. I swear it has helped relax my leg muscles too, which helps with the walking.

Why do I think that? Before I started the MMJ, my right foot did not point straight ahead when I planted the foot while walking. It stuck out sideways at a forty five degree angle instead, which would make my hip and lower back bark. I’m not back to where I was before the MS set in, but the foot is much closer to ninety degrees (pointing straight ahead) than forty five, and the corresponding back and hip soreness has disappeared.

Meanwhile, I’ll continue to visit the web site that I order from so see if they come up with any new product that sounds appealing. I’m secretly hoping for THC infused ice-cream.

ice cream

A THC infused beverage wouldn’t be a bad idea either. It’s a pity the brand name Mellow Yellow is already taken.

Full Steam Ahead

mailbox

Last March, I wrote about the complicated process of getting published.  I was a neophyte in an arena I knew nothing about, and my naiveté about the work beyond crafting a manuscript was quickly exposed.

Since then, I have worked feverishly on get a web site up, maintaining this blog, hunting endorsements and becoming more wired into the social networking world. Meanwhile, I knew the partners of the agency representing me were meeting in early October, and was informed my story would be a priority at the meeting, which I assumed meant query letters would be sent to various publishers shortly thereafter. I also assumed there wasn’t anything else I would need to do, other than keep track of the publishers we pursued.

I was right and wrong in those assumptions.

I was right in the sense that I did receive an e-mail after the meeting that informed me the other partner in the agency was taking over the marketing of the book, and was preparing a package to send to various publishers. But I was wrong about not having to do any additional work. In fact, I received a list of items that needed to be completed ASAP.

What were the items?  A chapter summary, something called a competition analysis, and a marketing plan. I’m not going to bore you with the details of what these items entail, but my immediate thought, besides “are you kidding me?”, was couldn’t someone have explained this to me during the summer, when I was patiently waiting.  I had plenty of free time back then, and wouldn’t have to scramble to produce them like I did now.

Remember, all I thought I needed to do when I first started this was write the manuscript, hand it off to somebody, and they would do all the heavy lifting from there. That obviously was not the case, and if you are keeping score, these are the tasks I have undertaken in order to get to where we are now: Beefed up my Facebook and LinkedIn presence; created an author Facebook Page; created a web site; started this blog; sent out more requests than I can remember to published authors asking for an endorsement; wrote a book synopsis; wrote an author biography; completed a competition analysis; completed a marketing plan.

I was completely clueless about what the last two items required. In fact, I had to basically plagiarize the templates my agent provided in order to assemble something that looked remotely professional. As I was preparing these documents, I remember thinking that I hoped I wouldn’t get questioned from prospective publishers about the competition analysis, which is document that compares your story to previously published novels, because I hadn’t read a single page of the ten books I listed. I had to cobble what I wrote based on book reviews I found on-line.

As far as the marketing plan is occurred, I honestly thought it was a bunch of bullshit, and doubted I could do a fraction of that that document said I would do. Hopefully, that won’t matter.

I sent the final three documents to my agent a few days ago, and wondered if this would be another hurry up and wait situation. It wasn’t. In fact, two days after I sent the documents, I received a list of ten publishers the package, which included everything I have mentioned in addition to the manuscript, were sent to. More will follow in the near future.

It’s exciting to know that after all this time, more than five years after I started the manuscript, the process has finally started. I’m looking forward to reading all the rejection letters that follow. I’ll be interested in reading what the editors that received the manuscript have to say. Hopefully there will be more good than bad. I don’t know how long it typically takes to get a response, or what the average time span is between sending them out and getting an acceptance, or deciding to self-publish. I’m betting it will be longer than I think or will like, and that perhaps I will still be writing about this a year from now.

As long as the query letters and packages keep getting sent, I will do my best to not let the rejections or length of the process get under my skin.

After all, all it takes is one yes.