Moving Daze

packing 1

I have spent a lot of time in this space over the last year talking about the new house. In fact, when I wrote last week’s post , my intention was that it would be the final one on the subject until the moving trucks had come and gone. But there is another aspect to this ordeal I haven’t spent a lot of time venting about, and it is coming to a head.

If you remember, I mentioned last week how I hate feeling unsettled because I have flags planted in two different locations, but neither of them feel like home. The new place doesn’t feel like home for obvious reasons, we don’t live there yet. My current home of 19 years doesn’t feel like home because….well, all you have to do is look at the above picture to understand.

As you can see, there is shit all over the place. Moving boxes in various stages of completeness are strewn throughout the house. I have no idea how many boxes we (K and her Mom mostly) have actually packed, but I’m guessing it is getting close to one hundred. I  made a Staples trip last weekend to purchase more of them because we were running out, and when K told me we should get at least 30 I rolled my eyes thinking she was nuts. Well, we have maybe ten left less than a week later.

Clutter and disarray generally doesn’t bother me, which is probably a guy thing. K is fond of saying there could be a steaming pile of cow shit in the middle of our living room and I wouldn’t notice it. Not this time, however. First of all, it has been like this for a couple of weeks, so after that long even someone like me can’t not feel it. Secondly,  negotiating the suddenly limited floor space is like navigating a treacherous obstacle course for someone who has no balance, a drooping foot, and leg with no strength.

My role in this endeavor has been to carry the stuff out of the house and into the garage, but, as you can see from this pic, our garage is getting full.

packing2

The cars have been evicted from our garage for a month now, and there isn’t a lot of available space. Negotiating the garage is even more difficult than negotiating the house space, but at least we have a place for everything. Having said that, there isn’t much room left, and we’re at the point were I will soon have to start restacking the boxes to create more space. A number of boxes marked fragile exist, and we don’t store anything on top of those boxes to prevent anything from getting crushed or broken. So in order to create more space to accommodate the additional boxes I know are forthcoming, I’ll need to segregate the fragile stuff from the pack, and start stacking the other boxes higher. But not so high that they will become top-heavy and fall over. That would be a disaster!

Most of the painting is done, so our next step is to start the deep clean, which I love to do more than anything else (NOT!) That endeavor begins next week, primarily with the windows (there are a lot of them), and the floors, which need to be steam cleaned and waxed.

K is of the opinion that we need to get this house spic and span, and that the Home and Garden channel has made it harder to sell houses because buyers expect a lot more from prospective houses they want to buy, assume things should be a certain way, and have become very finicky and entitled. Guess we will find out if all this extra TLC will make a difference. I certainly hope it does. If we can get the price we want, they can be as finicky as they want.

We did this a lot in the late 1990’s (moving four times in five years), but we are far removed from that era. Although I thought I remembered what a tedious grind it was and is, this feels much harder. Perhaps that is because back then we were young, didn’t know any better, hadn’t accumulated nearly the amount of stuff we have now, and I didn’t have MS. As bad as the garage looks, it could be worse, as we have discarded or given away a bunch of stuff we no longer need and didn’t want to pack. That is one slice of wisdom learned from previous experience.

We are preparing to mobilize the troops to help us move the stuff in our garage in advance the movers coming in and taking all the big stuff. Compared to where we started, there is not a lot left to do, but there is still enough. Especially if we want to be out in three to four weeks. Then comes the task of removing everything we packed and placing them their new locations. While it will be wonderful to be in that position, this endeavor is almost as bad as getting the stuff packed. Plus we will have a ton of empty boxes to discard. On and on it goes. Will we be completely settled by Thanksgiving? Christmas?  I’d like to think the former, but who the hell knows?

Like I said last week, it can’t happen soon enough.

 

 

 

Unsettled

Unsettled

It has been a while since I’ve written about the new house, primarily because the process has been slow and steady.  I may have mentioned before that this is the third time we’ve done this, the last time having occurred almost twenty years ago, and each time reminds you of the the highs and lows that go with the territory of such an endeavor. I had forgotten about the myriad of decisions that have to be made, about the emotional swings, and how the progress can feel like it is zipping along one week, then slow to a snail’s pace the next.

Memories of the first house we built are near and dear to my heart, primarily because it was the first, but also because we fired the contractor before we were under roof. With the help of my father-in-law, a retired carpenter who could, with perhaps the exception of pouring a foundation, build a house from top to bottom, we became our own general contractors and finished the job in less than four months. That experience is a story in itself.

Each house is different, and this one has the distinction of K being the general contrtactor from the start, and because we started in late autumn.  It has been an interesting process so far. When we initially broke ground, it was easy to measure the progress because clearing the site, pouring the foundation and floors, framing the structure and installing the roof were all visable markers.

It was exciting to witness, but the project was still in its infancy, and didn’t feel real in many ways.  That may seem a little silly because the eyes don’t lie, and you could see the drawings on a blueprint come to life, but we were still making tweaks to the design, and the idea of actually moving felt distant, at least for me. True to form, I compartmentalized the entire concept of what I knew would eventually arrive. After all, why fret over something that isn’t imminent?

Since then, it hasn’t been as easy to chart the progress, yet the progress has been real and is now moving quickly. Once the shell was up, the roof on and the windows in, the indoor work began. Once that occurred, the structure really began to take shape, although it might not have appeared to looking at it from the outside. But as we speak, the inside has been competely framed, all of the interior plumbing has been roughed in and so has most of the electical wiring and interior duct-work.  The siding is more than half-way completed, and the deck that will also have a screened-in porch is almost done. Every time I go on site I see something new and different. You can see the rooms take shape, and see how everything fits. It is beginning to look like a real house, and I am beginning to think of our current home in the past tense.

We still have a ways to go. The garage floor needs to be poured, the sheet rock needs to go up, all the cabinetry and fixtures need to be installed, the finish carpentry needs to be completed, the heating system installed, the plumbing and electrical work finished, the floors installed, the walls painted, the driveways created and the exterior grading finished. But most of the decisions have been made in regards to the materials and subcontractors, and it is a matter of lining them up and getting them in. I am hoping that we will be able to move into the new place before July is over, but have no idea how realistic that goal is.

Nonetheless, the move is imminent, and therefore very real. As exciting as that prospect is, and as much as I want it to happen sooner than later, we are also in a state of limbo, and I find that very unsettling.

Why? Well, an endeavor like this has a lot of moving parts, and while you try to plan for the choreography of events that never ends, it never goes according to plan. There are always glitches and unexpected costs that need to be addressed. I knew from the beginning that as this project neared completion, the bills would begin to mount, and that things would be tight until we sold our current house. That has always been my hot-button, and it is on the verge of being pushed.

While the thought of being settled into a house that I know is well built and tailored to our specifications is comforting and brings a smile to my face, the idea of moving makes me want to curl into a fetal position. This will be our fifth move, but I was a lot younger, more able-bodied, and full of piss and vinegar during the previous four. Perhaps I was also a more naive about what the move actually entails: packing boxes,  unpacking boxes, setting up the new house, and getting the new lawn and landscaping established. I know better now.

Then there is the process of getting our current home ready for the market, which in my mind is worse than the actual move itself. We have some cosmetic work that needs to be done to make the house look its best, and have to inventory every single item we own, deciding what to keep, donate, pawn off or take to he dump. It is a time consuming, tedious and mind-numbing process. I am very impatient when it comes to this shit, and want to devote as little time as possible to it. I don’t want to debate the details of what stays or goes, so my impulse is to throw a lot of stuff away, consequences be damned! K attaches more emotion, sentimentality and careful thought to the process, so I am going to have to do my best to meet her half way and not become irritable as we comb through the history of our life in that place.

Once all that is done and the move is completed, the final hurdle is to sell the house for the price we want. I am feeling the pressure of time, because common sense dictates you want to sell your house during the peak selling seasons of spring or summer. Waiting until the fall or, God forbid, winter, would not be ideal. We’ll be up to our eyeballs in debt by then because we will be carrying what amounts to two mortgages, and when that occurs I will be a basket case of worry until the house is sold.

How the MS is going to factor into all of this is anyone’s guess. I know I don’t do well in the heat of the summer, which is theoretically when all of this will occur. I also know a lot of stress isn’t good either, but I don’t see how that can be avoided. I have no idea whether the MS is going to allow me to be as involved and engaged as I want to be and, assuming it does, what my body will feel like when this is over. This was not a factor before, and brings an another layer of anxiety to the process. I want to roll up my sleeves and do as much on site as I can instead of paying others to do it, but will my body allow it? I’ll probably be sucking on that vape pen quite a bit.

These were all realities last fall, but they were theortetical. It’s an entirely different ballgame when they are on your doorstep. Between dealing with the day to day issues of getting the house built, dealing with cost overruns and planning for the actual move, the new house has taken a life of its own and consumes most of our time and energy. The strain is worse on K than for me because she is the general contractor. She is on the front lines every day, and has to deal with a myriad of personalities and other crap that is too long and complicated to get into.  She is really good at this and has done a remarkable job, but it is sometimes painful to witness.

We are on the verge of entering the final stretch, where everything comes to a head. Critical mass is approaching where we prepare and transition from one place to another. I feel it approaching. It is an unstoppable force, a test of endurance, stamina and nerve.  The feeling is exciting and terrifying, exhilarating and draining.

Summer has always been my favorite season. I have always enjoyed this carefree time of year when when I’m lounging by the pool, enjoying evening fires on our patio, and hanging out in shorts, t-shirts and bare feet. I’m always saddened when September rolls around because I know the cold winter months will soon be approaching. I never imagined a day would come when I’d wish the summer away, but here we are.

I can’t wait for this to be over.

Bad Timing

stocks

Timing is everything in life, or so the saying goes. I’ve often wondered if good timing is a by-product of foresight and astute planning, or of it is all sheer dumb luck. The one thing I do know is that when it comes to real-estate matters, our timing has mostly sucked.

Whenever we have been in the market to buy, it’s typically been a sellers market. When we have been in the market to sell, it’s been a buyers market, either because of high interest rates or a glut of supply.

We thought this chapter of our real estate exploits with the house we are building would be different. After all, K is the general contractor and is in a position to manage costs. We carefully reviewed our assets and financing options, determined that we didn’t need to borrow much and, after we sold our current house, could possibly walk away with no mortgage at all.

We planned the order in which we would utilize the various funds available to us. Not wanting to paying interest on anything until we absolutely had to, we decided to use our assets first before tapping into the various loan options, and figured these would cover us until late winter/early spring. The plan was realistic, well thought out, and all the signs pointed to a smooth and uneventful process, with no speed bumps or u-turns.

But history is a hard thing to overcome, and our wishful thinking was flushed down the toilet when the stock market suffered its worst week since the financial crisis of 2008, and the talking heads announced we were in the process of experiencing the worst December since the Great Depression. All I could do is shake my head, roll my eyes, smile a sad smile, and wonder why I should be surprised.

This development is not a deal-breaker.  After all, what goes up must come down, and visa versa, so I know there will eventually be a rebound. In fact, the market gained over 1,000 points yesterday, the single biggest daily gain in its history. But the recovery is a drop in the bucket compared to was lost these last ten days, and what is unknown is whether this is a one-hit wonder or the beginning of an upward trend to normalcy. What is also unknown is whether the asset we were going to liquidate will regain most of the value it lost.

The financial storm clouds are still there. The government shutdown had a lot to do with this, and will persist long into January as long as our Idiot-In Chief continues to insist on that stupid wall. His sophomoric comments about firing the Fed’s chairman added gasoline to the fire, but that also seems to have died down a bit. Then there are his ongoing legal issues, that are only going to get worse, to consider.

I’m trying to be optimistic and hope that the correction will occur over a matter of weeks instead of months, but have the nagging suspicion the wall issue isn’t going to go away. The political climate in Washington will only get worse when the new House convenes and starts all of their investigations, which is sure to keep the markets in a state of uncertainty, which is never good. And if a smoking gun emerges from either their investigations or the Mueller report, watch out!

So it is back to the drawing board. Unless the plunge of the last two weeks corrects itself in a hurry, we will have to employ the borrowing options first, which will hopefully buy us the time the market needs to recover. Fortunately, K had to foresight to obtain a building loan for more than we thought we would need, and we have a lot of equity in our current house. But the idea was to emerge from this with little or no debt. If the current situation remains by Spring or, God forbid, gets worse, we’ll either have more debt or need to liquidate more assets than we wanted. Both of these scenarios suck beyond imagination, but the foundation is in, and stopping the project in its tracks while this all gets sorted out is not an option.

As this project got started, my biggest fear is we would run out of good weather before we could get under roof, which would delay the process by three to six months. I still don’t want to see this become a reality, but that may be the one thing that provides the necessary time for the markets to settle down. Wouldn’t it be ironic if this not only occurred, but turned out to be a godsend? Perhaps, but it isn’t something I am rooting for.

I’m going to stop driving myself crazy and not look at the numbers every day for the next week or two. Nidan and I are going to Florida for a few days after New Year’s and I’ll wait until our return before taking another peak at them. Hopefully I will be pleasantly surprised. Meanwhile, we can ride this out until the framing starts. Some big bills will start rolling in then, at which point we’ll have to commit to a financing plan of some kind.

What we naively believed was going to be smooth sailing, is turning out to be more of an emotional roller-coaster, but I should have known better. Our previous house-building experience had repeatedly demonstrated that nothing ever turns out the way one plans. So why should this be any different?

On a separate note, I’d like to wish everyone a happy, healthy and prosperous new year. I hope your 2019 is filled with brightness and hope, and that any troubles or pain you are currently experiencing last only as long as your New Year resolutions.

 

The Next Big Project

BW6

Last summer, I mused about needing a new house. At the time, the sentiment was real, and the motivation was there, but the desire was more wish than reality. Our list of requirements was long, you see. We wanted to either build something new, or completely gut a run down house in a good location. We also wanted to remain in our current town, have access to city water and sewer, and to own a relatively flat piece of property, but finding any land that checked off all the boxes AND not cost an insane amount of coin turned out to be like trying to eat soup with a fork.

K had doggedly turned over over every rock, and called anyone she could think of who might know somebody or something, but every promising turn resulted in a dead end. It was getting to the point where we began to wonder if we needed to revisit our requirements because at the rate we were going, there was no possible way we would move in 2019, which was the goal.

While this hand-wringing was going on, a new option presented itself almost by accident. We discovered an opportunity that was not yet public knowledge, and K ran with it. Lo and behold, after several months of back and forth, we reached and signed an agreement and forked over a deposit, which was necessary because the owner’s development plan for the property and not yet been submitted to or approved by the town’s Planning and Zoning committee. We had confidence it would, but timing was important because our desire is to break ground before winter, and move during the spring or early summer.

The town approved the plan on August 2nd, and we are currently in the waiting period where the requested changes P&Z made have to be submitted. The period in question also allows anyone who wishes to dispute the committee’s decision to file a complaint and gum up the process. Assuming the changes are made and nobody raises a fuss, we should formally close and own the property by the end of the month.

Now the fun begins really begins. We’ve been working with an architect for almost a month to create a plan that pleases K’s aesthetics in addition to being ADA compliant. We’ve also been looking at things like windows, doors, flooring and material of that nature so we can begin pricing this out.  We’ve had preliminary discussions with our bank to discuss financing options that are going to be predicated on whether we are going to serve as the general contractors for this project or hire a builder to oversee everything, which is another decision that needs to be made soon.

Actually, there is no “we” as far as being our own contractor is concerned. K will serve in that capacity. We’re familiar with the drill because we assumed that responsibility with house number one after we fired our general contractor before it was completely under roof, and hired all the subcontractors after that. Her father, a retired carpenter who knew how to build  a house in its entirety once a foundation was poured, was alive at the time and served as the on-site general foreman.

House number two was done by a local contractor, who built a decent house, but there were issues along the way. K has always been ahead of the curve in terms of healthy house construction. Much of what contractors thought was crazy twenty years ago is code these days. This wasn’t much of an issue with house number one because we subbed out most of it and paid the subcontractors ourselves, but it was on the second house. The contractor’s primary interest for that job was to get the thing up quickly with little deviation from his normal process, and he was therefore reluctant try anything new or different. Still, with K riding his butt, sticking firm to what she wanted, and making sure everything the subs needed was on-site so they didn’t wander off to another job, we moved into the place less than six months after ground was broken.

K has been and will continue to be the driving force behind this project. Of course, she will want to pull out her hair during the construction process, and repeatedly lament what possessed her to take this on, but the truth is she loves this stuff. The other truth is we can save a lot of money by doing this ourselves.  In retrospect, she and her Mom missed their calling. They have the eye and talent as far as house design and layout are concerned, and her Dad had the skills to make their visions a reality. They could have created one hell of a successful business flipping houses long before it became the rage, and maybe I’d be comfortably retired by now.

So, assuming there are no blips within the next two weeks, the thought of a new homestead has transformed from a conceptual idea to something very real over a relatively short period of time, and some anxiety comes with it.

Why? Well, it didn’t take long for sticker shock to set in. Building materials and costs have increased dramatically since 2000, the last time we did this. We know what we want this project to look like when we are finished. The great unknown right now is whether the cost is going to force us lower our expectations. I hope not.

We also know nothing ever goes as planned when it comes to building a house, so there will be many stressful and aggravating moments along the way, especially if this drags well into next summer. Managing stress is going to become paramount, especially for me since I know it exacerbates my symptoms. I may not be on the front lines while this is going on, but if K gest stressed, I get stressed.

It is going to be quite the challenge for her to pull this off, maintain her writing schedule, and keep up with the current house. I will do as much as I can, but we’ve long established the fact that my physical limitations prevent me from picking up my fair share of the slack. But I will try to approach things methodically as this develops, and address one item at a time. It is easier not to become overwhelmed that way.

I’ll post periodic updates as this process unfolds, and share more of the specifics of what our plans entail. Meanwhile, I have to dust off the calculator, figure out how to pay for the damn thing without mortgaging our future, and hope/pray that Mr. MS doesn’t decide to up the ante and create a host of debilitating problems before the job is done. What a shit-storm that would be.

 

 

 

What The Hell is Happening to Me?!

scream

My response to the treadmill incident was to ignore it. I had no idea what had just happened, instinctively knew it was bad, but my inclination has always been never to worry about something unless I absolutely have to. The episode was short-lived after all and might never return, so why bother?

Two weeks later curiosity got the best of me and I returned to the treadmill, the same thing happened, and I still ignored it.

This ignorant bliss came to a crashing halt several weeks later when I ventured outside to mow the lawn for the first time that spring. I don’t have a big yard, but the house was built on a slope, so the terrain is slanted and the landscaping made the lawn better suited for a push mower. So I grabbed the trusty self-propelled mower, ventured outside and experienced something I will never forget.

I had to stop several times because I lost control of the limb like I did on the treadmill, but it was infinitely worse. I was not on smooth, flat terrain you see, and I rolled the ankle over on three different occasions, once so bad I thought I might have sprained it. When the job was finished, I literally dragged my leg and the lawnmower to the garage. It took much longer for the symptoms to subside, but they did not completely go away this time. I was left with a slightly drooping foot and a very slight but discernible limp.

My bubble had been burst. Fear and panic began to worm their way into my comfortable cocoon of denial, and I wanted to scream. What the hell was happening to me? When I was in the throes of whatever this was, I didn’t have any pain, but the limb simply didn’t function. I didn’t have any point of reference in regards to what this could be, but I knew I had to do something. So I went to an orthopedist.

Tight hamstrings. That was the verdict after I explained the situation and he finished putting me through the paces and examined me, which took only ten minutes. My reaction, although I didn’t say it, was “are you fucking kidding me?” It was humiliating because the guy obviously didn’t have a clue but couldn’t admit it, and probably thought I was a hypochondriac. Being the dumb ass that I was, however, I religiously performed the stretching exercises he gave me for a couple of weeks and it did absolutely nothing in terms of improving my limp or foot drop.

By now I was really beginning to panic. I sensed it was something muscular, and for some reason grasped upon the thought this might be the beginning of Lou Gehrig’s Disease (ALS), which terrified me. I rarely obsess, but could not get this thought out of my head.

By this time, K was becoming concerned as well. I had hidden the entire thing from her until the lawnmower incident, but fessed up afterwards because she could obviously see what was going on. She also tends to worry more than me, so I did not share my ALS concerns because I didn’t want her to go down that rabbit hole.

I knew nothing about neurologists at the time, admitted that I didn’t know what to do, and she suggested I see my chiropractor. After all, he had always helped my occasional lower back issues. Maybe he’d have some insight that more mainstream clinicians didn’t.

So to the chiropractor I went, explained what had happened, including the ortho disaster, and he spent the next hour examining me in a variety of ways. When it was over he said I needed a MRI, and it would provide the answers we were seeking. He also referred me to a neurosurgeon he knew, and told me to make an appointment. I didn’t know it at the time, but he suspected I had a tumor on my spine that needed to come out.

Two weeks later, he called me with the MRI results, explained what they showed, used the term “lesions” and “demylination,”and told me that should I cancel with the neurosurgeon and find a neurologist instead. Afterwards I looked up both terms on the web and saw they were fingerprints of MS.

Although I had not yet been formally diagnosed, in my heart I knew I had MS, and was glad to finally have a name to what was ailing me. Although I knew nothing about the disease, I honestly thought it wasn’t a big deal, and minimized the implications, just like that first time on the treadmill.

What a fool! After I was formally diagnosed and the symptoms became progressively worse, I realized this disease wasn’t to be taken lightly. Once I found the neurologist I’ve been with for about eight years now, I was able to get a handle on it and retard the progression. It obviously has not stopped, but the pace of the progression is nothing compared to those first three years.

Knowing what it was with forced me to plan for a future that had suddenly possessed a lot of uncertainty. But at least I had the keys to the car that would take me down that road.

My First Time

shock

There are very few events in my life that I vividly remember: my wedding day, the day my son was born, and where I was when I first saw the images of the 9/11 attack that brilliant late summer morning in Connecticut, come to mind. They are all etched in my memory so clearly, that not only can I recall images of the occasion, but emotions, smells and things of that nature. Perhaps this is because they were so profoundly momentous and meaningful.

The day MS entered my life is also on that list. My first time, as I like to refer to it, occurred out of nowhere like an unexpected and unwanted bolt of lightning. Of course, I didn’t have a clue  what was going on at the time, or that it represented the beginning of a life-altering journey.  Be that as it may, the experience was so shocking, and the consequences so profound, how could I not remember it?

Ten years ago, I dragged my lazy ass downstairs into the cellar early one Tuesday evening, and stepped onto my treadmill for a long-overdue workout.  I had been in good shape for most of my life and, while not a fitness fanatic, worked out more often than not. For some reason, I had fallen into a rut and had not touched any exercise equipment for over a year, and was getting soft in a lot of places I didn’t like. For months I had vowed  to resume working out because, as a creature of habit, I knew all I had to do was get started and it would become part of a regular routine.

So I seized upon the thought to take that first step, ventured downstairs, strode onto the treadmill, and turned it on. Back in those days, my typical workout consisted of a ten minute warm up, followed by forty-five minutes of gradually increasing speed before concluding with five minutes of winding down at much slower speeds.

On that fateful evening, I didn’t make it past the first ten minutes. Shortly before the warm-up concluded, I felt a strange sensation in my right leg. At first, the leg felt heavy, as if a large weight was strapped to it. My reaction was to increase the treadmill speed, thinking it might work the kinks out. Bad move. In less than thirty seconds, the leg went from feeling heavy to being completely unresponsive.

The only way I can describe what I thought was going on in that moment, is that my leg simply stopped working. The knee wouldn’t bend, my foot wouldn’t lift, and I literally couldn’t control it. The limb felt as if someone had sucked the bone from it, and what remained was a limp, lifeless, piece of emptiness. Keep in mind this all occurred within a matter of seconds, and my mind didn’t have time to understand what was going on. All I knew is something was terribly wrong.

I also sensed that I needed to get off the treadmill immediately. I therefore grabbed onto the bar in front of the machine’s control panel, hopped to get my good leg planted on the side rail, swung my bad leg over by swiveling my hips as hard as I could in the direction of my good leg, and let go of the handrail, all one motion. I didn’t realize it at the time, but my balance was shot. I unintentionally lurched forward, tumbled off the machine, and onto a sofa that fortunately was within falling distance. Once my upper torso hit the sofa, I was able to brace the impact with my arms and roll onto my side. Whether I consciously knew what I was doing at the time is debatable. In hindsight, I think instinct took over and allowed me to assess my surroundings, and find a safe landing without really hurting myself.

As I sat upright on the sofa, the lifeless limb was bent at an odd angle, and I had to grab it at the knee and calf to place it in a normal position. My heart was meanwhile thumping in my chest and temples. I tried to curl my toes and move the foot in a circular motion at the ankle, but it would not budge. All I could think of was what the hell is happening to me?

I remember wondering if this was real or a bad dream, but not much else. After about fifteen minutes of sitting there doing nothing but ponder my fate, and I know this because I glanced at the wall clock, it occurred to me that the leg was working again. I could curl my toes, bend my knee, and stand up. All the strength and sensation had come back like magic. I strode back and forth across the room without any issues and sprinted in place, lifting my knees as high as they could go, like a sprinter warming up for a race.

Everything was normal, and I was confused as hell.

I turned off the treadmill, sat back on the sofa and one thought came to mind. “What the fuck was that?!” This was followed by, “what am I going to do?”, and “Who am I going to tell?”

The answer to those last two questions was nothing and nobody. Everything was back to normal, so I decided to ignore the event and pretend it didn’t happen. After all, what transpired was probably a complete fluke, and would never happen again.

Obviously that wasn’t the case. I tried the treadmill again two weeks later and the same thing occurred, only this time I was prepared for it, and stopped the machine once that strange sensation started coming back. Another difference was my foot started drooping and never fully recovered.  An attempt to mow my lawn a few weeks later forced me to accept the fact I could nor longer ignore whatever this was. Thus started the quest to find out what was wrong, which I will share in next week’s post.

Looking back at the event now, it seems so……innocent. I was so naive back then and felt bulletproof. Little did I know that my life would never be the same.

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.