So, what's it like to have ALS today?
I am now to the point where I can deal with my limitations better, often without frustration or anxiety. I have some difficulty when I find myself required to navigate in, through and around large crowds, not so much with the attention I receive, more so with the general lack of attention, causing me to frustrate the juggernaut mentality seething, yammering and pleading to escape its tethers and mow a furrow lined with multitudes of dead idiots.
To be real, two years and two months of Gehrig's behind me and an unknown future ahead has put me in a position of power over myself that I would never have thought possible. We all have the ability to choose how to live. We create misery within ourselves more easily than one may expect. We are a canvas viewed from the universe yet we can only see the art from within, a reverse perspective at best. I have lived such misery. I went through months drawing myself inward in self pity. I hated what I had become. On many occasions I fabricated schemes designed with suicide in mind. The evil truth was that the cruel ALS took away the vast majority of options when contemplating your own demise. Eventually, I determined that rolling into the pool or the lake to drown would be too unpleasant and dangerous, -the danger of being dragged out braindamaged- my family further burdoned with a now much stupider quadriplegic. Rest assured that those days and thoughts remain permanently behind me. I only talk about this because I've suspected all along that most readers wondered if I ever considered killing myself. I told you I was going to "be real".
I am now to the point where I can deal with my limitations better, often without frustration or anxiety. I have some difficulty when I find myself required to navigate in, through and around large crowds, not so much with the attention I receive, more so with the general lack of attention, causing me to frustrate the juggernaut mentality seething, yammering and pleading to escape its tethers and mow a furrow lined with multitudes of dead idiots.
To be real, two years and two months of Gehrig's behind me and an unknown future ahead has put me in a position of power over myself that I would never have thought possible. We all have the ability to choose how to live. We create misery within ourselves more easily than one may expect. We are a canvas viewed from the universe yet we can only see the art from within, a reverse perspective at best. I have lived such misery. I went through months drawing myself inward in self pity. I hated what I had become. On many occasions I fabricated schemes designed with suicide in mind. The evil truth was that the cruel ALS took away the vast majority of options when contemplating your own demise. Eventually, I determined that rolling into the pool or the lake to drown would be too unpleasant and dangerous, -the danger of being dragged out braindamaged- my family further burdoned with a now much stupider quadriplegic. Rest assured that those days and thoughts remain permanently behind me. I only talk about this because I've suspected all along that most readers wondered if I ever considered killing myself. I told you I was going to "be real".
I would also entertain such thought given the possible choices.
ReplyDeleteI'm glad you didn't ever follow those thoughts to that conclusion.
ReplyDeleteThere is another possibility you may not have considered if you were to take the proverbial plunge into a lake or pool. We would have been there, getting you out before any death or dismemberment ensued. Unfortunately even my mammoth strength would not have been able to recover your 350 pound wheelchair. The only option at that point would be the "emergency" push wheelchair that resides in the back of the van. Need I remind you how much you LOVE being pushed around in the collapsible contraption...?
Just sayin...
Love you dadda.
Tru dat Rachel, tru dat
ReplyDelete