Live in the Moment

[Guest guest]

A year and a half ago a multitude of confounding medical and physical issues

that had plagued me for half of my life were given a name, a diagnosis, a

condition, defined as a disease process. As relieved as I was to know that

there was indeed something going on in my body that was part of an organized

assault on my nervous system, little did I realize that a year and a half later

I am not much closer to accepting the facts as they are.

I had unknowingly watched the degenerative processes of CMT subdue my

grandmother, uncle and father. As common as this neuropathy apparently is,

particularly in the southern Wisconsin area, no practioner(s) involved in the

care of any of us suggested or pondered aloud a hereditary neuropathic process

as the condition that was affecting us.

As a part of I get daily postings that I find variably interesting

relative to their applicability to my condition and situation. Ultimately, it

would seem that for as many of us as there are, we all have varying degrees of

issues, impact, limitations, and social/familial/medical/rehab support systems

in place. I read pieces of my story in many of the posts here. I feel your pain

and suffer your same physical and emotional hurdles.

But other than my father, whose path I feel I am following similarly 40 years

behind him, it would seem that for such a prevalent disease, we are all at least

mildly different in our presentation. Obviously, there are numerous strains of

the disease.

Also, I would suggest that physiologically and anatomically we all have a

similar basic process that is bringing us down, but the way each of us lives

seems to bring on different associated issues that make us present with

different issues. Levels of activity and injury related to balance and tissue

weaknesses create varied presentation and ability to cope physically.

CMT does not, to my knowledge, affect the tissues/nerves of the shoulder, but my

father has debilitating shoulder issues that I think are caused by a) the

over-use of this joint as the shoulders work harder to make up for deficiencies

in the extremities, and the jarring impact of numerous falls due to balance

and weakness issues. I am sure there are many similar examples of anatomical

troubles that are secondary to the primary disease that is CMT.

The complexity and variability of CMT, compounded by the fact that it is not

well know by the general public (unlike MS or MD) makes it ridiculous to try to

explain to most who inquire. I broke my foot a year ago, so most of my

community and co-workers saw an obvious injury and treatment for that expended

period of recovery. Since then I have had a more pronounced ataxia that most

associate with that known and obvious injury.

Of course there are many inquiries of varied levels of genuine interest, but I

find that there are very few that I can even begin to explain the complex reason

for my awkward gait. And when I do take the time to explain that I have CMT,

what it is and where it is taking me, I frequently find that it is so much more

than the questioner was expecting that very few people really comprehend what I

am telling them.

Again, my father is the only person that I really share issues and emotions

with, because he is really the only one that gets what I am talking about. For

that I am very grateful. Ironic that the source of my ailment is my greatest

medicine. Of course I say medicine metaphorically since there is no pill to

make me whole.

What my point is here, I am not sure. I am frustrated by this ailment every

waking hour of every day. My hobbies, my work, my family life - all have been

affected by CMT. I am trying to find a new perspective that allows me to

appreciate what I have and not obsess over what I have lost. If I woke up

tomorrow and found out I had ALS, I would beg to return to the CMT that I

otherwise despise.

I am not dead; I will not lie down and I will not go quietly. A recent

exploration into the world of Buddhist philosophy has begun to help me to let go

of some of my frustration and depression. The four noble truths of Buddhism:

The Four Noble Truths

1. Life means suffering, 2. The origin of suffering is attachment, 3. The

cessation of suffering is attainable, 4. The path to the cessation of suffering.

My ability to comprehend and apply these truths is limited and situational, but

it is my hope that further application, study and meditation will allow me to

cease my attachments and thus my suffering, and live in every moment as a

blessed one. If any of this rant rings true to you I would encourage your

exploration of these truths. Likewise, if you have found a way to live

blissfully beyond your limitations I am an interested audience. I could blather

on but my hands are tired and the Brewers are coming on.