Think back with me to a time in your life where
it seemed like the worst…the end…the bottom…the box canyon with no way out. Take
a minute or two to contemplate that time in your life. The pain, the anxiety,
the frustration. Now…think about what has happened since then. Well, if you are
reading this, you obviously survived, right? And if you are like most people
there is a good probability that you have even thrived in spite of it. You learned
something. You grew. You may have lost something, but you gained something else – which was
probably of greater value than what you had to begin with.
The conclusion of this little mental exercise is to show
you the solid evidence that you have, in fact, survived your own life to date. You
did not die. All was not lost. In fact, if I were to ask you if you would trade
your most harrowing and painful experiences in life for “better” ones, you
would probably decline. Somewhere inside you know that you are better and
stronger because of them, and you wouldn’t trade them for anything. They have
been an integral part of making you into who you are today and are therefore of
inestimable value. No doubt that you did not see this happening at the time,
and handled it however you are inclined to: cursing this or that, insisting
that this incident was more than you could handle, begging God to take it away,
kicking against the goads, as it were. But you made it. And you are the better
for it. To say this is not true in your
life would just tell me you have unresolved issues, because this is what has
sustained me – and continues to – in this particular time in my own life.
Knowing that I will see the benefit to my soul, spirit & life in all of
this by looking at the past empirical evidence is a comfort to me when there is
so very little that I can stand on.
So where did I leave off on this telling of my story?
Off to see the Wizard of MS as I recall, with failing sight and legs that had
been cut out from underneath me by an unruly central nervous system. As I write
this, it seems like such a long time ago already. April 11th, I
think. Long story short, although he has nothing more in his bag of tricks than
the next neurologist, he seems to have a much better handle on just how the
tricks work and who will benefit from what, instead of the previous doctor who
suggested I just stick my hand in there and pull out whatever suits my fancy
and give it a go. He prescribed the dreaded Tysabri – a tier II medication in
the MS world; the big guns, which are used when the tier I drugs have either
failed or would seem to be inadequate. Since it carries some potentially fatal
side-effects, I was less than enthusiastic about it, but they took the time to
explain these in medically explicit detail to my satisfaction, and how I was
not really a candidate for these to happen, and my risk factor of any side
effects was actually quite low. I signed all the papers and agreed, and they
were off to the insurance world of red tape, where it took a few weeks for them
to decide if I was worth the financial cost of treatment.
I came home from that visit and decided that I had
reached the bottom of my physical deterioration. I determined to get better,
starting now. I had been approved for physical therapy for my disappearing
legs, and so on the Tuesday after my appointment with the Wiz, I gave it all I
had. No stranger to working out, I was determined to make my muscles do what
they were supposed to do. What I learned that day about the cooperation of the
muscles in the body was amazing. Who knew even your shoulders will rally to
life to lift your foot? I also realized that where the bottom is was not mine
to decide.
Wednesday I woke up and felt completely destroyed. I
could barely move. I figured that I may have just over-done my therapy, and Thursday
would see some improvement. Wrong again. Even my eyesight was worse. By Friday,
I had serious doubts as to whether or not I would even survive this. I was
reduced to lying in bed, staring at the ceiling that I could not see, unable to even roll over, too
weak to stand up unassisted to use the commode. This, my friends, is a scary
place to be. Unable to see the numbers on the phone, Mark dialed the Wizard’s
office, only to find out that the insurance gods had still not made a
determination as to whether or not I am worth saving, and a kind nurse there
suggested a trip to the ER if things did not improve.
I presented to the emergency room with an inability to
raise my foot off the bed, a right side that was completely numb from the chest
down, hands and feet that were on fire and lacking proper sensory feelings,
vision that had been reduced to blurry, pixilated silhouettes, an invisible
iron band around my ribs, several other symptoms of a more personal nature, and
a sense of gallows humor that was mercifully still intact. After giving the list of symptoms,
I was treated to an IV, a chest x-ray, an EKG and a urinalysis. After several
hours and a consult with the Wiz, we got the good news and the bad news. The
good news: I am not dying. In fact, according to the lab data, I was probably
the healthiest person in the ER that night. I simply have a central nervous
system error. The bad news, there really isn’t a damn thing they could do about
it. They suggested an IV of high dose steroids, which I was too pooped to refuse.
As I predicted, they had no effect, but it felt at the time like bailing
at least a bucket full of water out of my sinking ship.
I went home that night, grateful for the good news, but
cannot describe in this little recap how helpless I felt over the fact that
there was nothing more on the agenda than sit and wait. Even when the powers
that be decided they would give me a sporting chance at the medication, they
were quick to point out that Tysabri does not alleviate symptoms. The whole
point of it is to keep the symptoms away once they leave. The leaving would
just have to happen in its own time…if at all.
And so since that day, it’s a day at a time. Wake up and
hope that something will have changed. The Tysabri IV went fine, with no ill
effects that I noticed. Slowly, I have been regaining feeling in my legs and
right side, and the strength in my legs has been returning. My eyes continue to
be functionally blind, and it’s only with the aid of a zoom feature that I am
able to be typing this with a full screen of kindergarten-size font. With physical
therapy I was able to get up with a walker, and have progressed now to walking
at home with a gait we fondly refer to the Zombie Mom Shuffle.
Having updated most of the fun details of this vacation
in hell, I have come to the understanding that I can no longer confine this to
a blog, and have determined that I am going to put it into a book. For a few
weeks now, I had been unable to even look at a computer screen for the
brightness, and nothing was there when you did turn down the contrast. I was
left to figure out just what does a person do who cannot see or walk? When the
people you depend upon for your most basic functions have done their job, and
you are left alone, you have no choice but to sit and think. And with me, well,
at least I never run out of stuff to think about. It’s just the outlet that I
lacked – and that was maddening. I felt like I lost everything, including my “voice”.
But I do know that one factor in this remission, or recovery, or whatever you
want to call it has been my attitude, and I don’t say that to blow my own horn –
because it’s not as complimentary as it may sound. I’m just sick and tired of
this shit and I have decided somewhere within my being that this whole
handicapped thing is not for me. I’m pissed off a good deal of the time, and
have decided to let that anger turn into something else.
I have an up close and personal understanding of just
how much our minds influence our condition. And this nasty-ass disease has
given me a golden opportunity to explore this, because unlike my son and his
pet disease, this one has not just a lot more question marks, the whole thing
is nothing but a question mark. Which means that I get to fill in the blank. What
causes a remission? Straight up, they will tell you they don’t know. Is it the
medication? Is it supplements? Diet? Lifestyle? Or just your prodigal nerve cells
deciding they will come home after all? Since even the all powerful Wiz can’t tell
me that, I am going to take it upon myself to fill in that blank and believe
that it is, in fact, all inside my head. The manifestations are real enough,
but so is my attitude.
A while back when we had a roll-in shower installed for
Philip, I was tending to natures call and staring at the newly tiled floor. I
was so overwhelmingly thankful for the bathroom remodel, that I told myself
every time I look at this floor, I am going to be grateful. And for a while
that was working quite well for me. After all, between me and Phil I visit the
room several times a day. But it got a little harder as things progressed from
bad to worse here. But I didn’t quit. For all the days I spent bitching and
complaining about my plight in my head, that tile floor was there to remind me
to be grateful. We’ve had several one-sided, heated discussions about why I
should be, but as they say, the house always wins.
I can still see to navigate. I have some amazing people
in my life. My kids are all doing well. Philip is still healthy as can be. I can
still laugh. I can still love. I am still alive, And for the past couple of days I realized I
have something to write. In fact as I attempt to write this today, I realize
that I probably have an entire chapter for each sentence in this note.
