So, as I’m sure you guys know, I have finished my lent posts. Over the last 40 days, I have found that creativity on demand is something I often underestimate the difficulty of. For the time being, I’m thinking of starting up again on Monday with an exploration of my poetry in the form of a Shakespearean sonnet, maybe a villanelles, quatrains, or whatever. I would just like to take some time to explore various poetic forms, rather than being restricted by subject matter like I did with The haiku.
For those of you who are inclined to comment, what subjects interest you the most? I’m currently working on another book, but I was thinking about beginning work on LWG (Loving While Gimpy) which focuses on love of all kinds in intermingles it with challenges that disability may present. But let me know what you guys think. See you next week!
The royal purple of deep, abiding eroticism,
Washes over my ecstatic, writhing body.
I rise to the attentiveness of your ethereal caress,
Deep red passion washes over me in waves of tidal bliss,
Strong yet gentle, you pull me into your entryway to bliss.
Colors flash across the walls in the temple of my mind,
Up and down, slowly.
Faster and faster, the spotted Souls of our carnal union dance,
Pulsing, throbbing, moving to an unheard beat.
The breath of mother Earth,
Panting heavily, until it’s over.
We have ignition!
My friend, Harold Daniel Cherney would’ve been 70 today. He passed away three years ago, due to the fact that polio had left his body in an unfavorable condition, and if I remember correctly, he was also suffering from muscular dystrophy. Toward the end of his life, he grew increasingly frustrated by his physical limitations. I however, prefer to remember him as the Paratransit Prophet. Harold was the epitome of a modern-day Renaissance man. He was a disabled rights advocate, an artist in both the traditional and digital sense, storyteller, a poet… But above all that he was the no bull shit Sage. He’s one of the reasons I finished my Associates degree in multimedia, a program which focused primarily on 3-D graphics and animation; something he was extremely handy with. He often gave me a much needed trip to his own dark places, and as we commiserated, he showed me that there was a way out. A proverbial light at the end of the tunnel. It’s for him that I write this.
Paratransit Prophet with your futuristic space chair,
Hydraulics abound, it’s as if you were floating on air.
Artistic vision the likes of which I’d never seen,
the beauty of the mind’s eye shines a light like heavens beam.
Modern-day artist, and digital revolutionary.
I write this tell you that the burden was not yours alone to carry.
Your light, it shines, it continues burning bright.
I’ll continue to illuminate those dark places,
That we spoke of day and night.
I’m sorry that I wasn’t there toward the end.
I felt there was nothing I could say, do, or recommend.
I hope you can forgive me, because in the end…
I’d like to believe that it’s what someone does after the end, how are memory lives on that marks a friend.
There’s nothing in the world I can ever do to thank you enough,
For being there for me when times were truly rough.
Except to carry your memory with me,
And carry on your mission,
To make the world a better place, and stop this shitty cultural fission.
And maybe one day I’ll take your place,
As the Paratransit Prophet in this time and space.
But the man known as Harold Daniel Cherney, I can never replace.
What you are about to read was never intended as a monologue. These were real thoughts that I confronted during a certain period of my life. I wrote it in the form of an open letter, which essentially caused a firestorm amongst a lot of my friends. I have thought long and hard about whether or not to include this as part of The Gimpy Monologues… It is an intensely personal thing to include her, but the entire project is intensely personal to me; therefore, I have decided to include it as part of the project. Every person with a disability at some point or other, regardless of whether or not their condition is either degenerative, terminal, or considered stable will consider these types of things in their lives. It is for that reason that I share this with you all.
This isn’t some half assed statement. I thought about this a lot, and I’ve realized that overall, I need to learn to be kinder to myself. And the only way to treat myself more kindly, is to stop hiding the ugly parts that I don’t want to deal with. Mind you, I’m not talking about tomorrow, next week, or even next year. It is simply a statement that at some point I would like to make true of my own volition. It’s a decision I actually made a long time ago, that very few people know about… And the ones that do, have tried to convince me that I should change my mind. But I don’t see that happening.
I have seen death take many people that I’ve cared about in my short 28 years of life. Some of them were taken by a series of seemingly random circumstances, some due to natural causes, and others still taken by a series of horrible choices, of which they could not reverse the consequences. I’ve seen the struggles that come with old age in my own family. The senility, the persistent pain, the mood swings and so forth. This has made me think a lot about what I want out of my own life, and consequently, out of my own death.
I was born with cerebral palsy, and for those of you that don’t know, it is a neurological condition brought about usually after or during the birthing process as a result of brain damage, either due to slight hemorrhaging or lack of oxygen. The condition is not a disease… It is just that, a condition. It is not degenerative, and as far as I know cerebral palsy in and of itself is not hereditary. There are however normally other conditions that are present in cerebral palsy patients that are in fact genetic. The way this condition presents itself in me is that it affects my ability to move my lower extremities, and it affects the coordination of my left hand. This makes it difficult for some common everyday actions to be performed in a manner expected of a more able-bodied individual. This is the basis for my decision. I have seen the clutches of old age take otherwise vigorous and vital members of society, and reduce them to little more than children with a greater understanding of what they should be capable of. This places a burden on everyone around them, whether we lie to ourselves or not, the truth is that the burden does in fact exist.
This is why I have decided that I would like to end my life at the age of 60. Before senility has the opportunity to set in, and before further impairments to my movement can further degrade my quality of life. This is also one of the reasons I decided that I don’t want children. Not because I don’t love them, and not because I don’t think I would make a phenomenal father. I’m certain of both of those things. But I could not bear the thought of passing a genetic condition on to a child who may face greater difficulty than I ever could’ve surmounted myself. If I do have children, they will likely be adopted. There are far too many children in this world who go unloved, and uncared for simply because as a species, we thrive on the purpose of selfishly passing on our own genetic material. Whereas in my case, the likelihood of my genetic material being inferior as it is, is significantly higher. So I find myself not to be plagued with such selfishness, but rather only with the desire to show a child love.
The thought also occurs to me that I may never even have to make this decision to end my own life, because statistically speaking the average life expectancy of an individual in my situation is around the age of 51. So this forces me to ask myself, what do I want out of life? I have no girlfriend, at least for the moment. I have an amazing group of friends. I have a fairly rich social life, a fairly fulfilling means of employment, and then embarking on future projects that promise to be life enriching. So the only thing I want out of my life, is to live out how many ever years I have left in happiness with those I love. I don’t want to be remembered as someone who saw the end of their life embittered by the trials of becoming elderly. I want to be remembered as someone who inspired those around him, made him laugh, then cry, then laugh some more. I want to be remembered as someone who lived his life by one principle; the principle of unconditional love. I hope that admitting this to a group of people potentially larger than I will ever meet in my own life, will help me take that step to be just a little kinder to myself and in turn, a little kinder to those around me.
And I hope that to those that read this, even if you do not like what you’ve read… You learn to accept the art, regardless of the flawed artist that creates it. Please be and live well.
I feel like I can breathe again. No, I wasn’t suffering an asthma attack nor was I buried alive. My brain has granted me a brief, lucid moment of mental focus that can insidiously slip away. Memories, what memories? All I remember is a void as endless as prim
ordial space. However, there are no atoms, no matter, electrons, neutrons, no ingredients for a big bang. There is only a lonely, starless universe. And I’m trembling, because, words do not obey me like they used to. I’m scrawling whatever thoughts come to mind. Because, I have Alzheimer’s. Nature’s cruelest torture. I used to teach entomology, the study of..of bugs, insects. And I had a vast knowledge of the scientific world, I was an amatuer astronomer; my boy, I think his name is Dean, and I used to sit outside and watch the stars. I knew the various constellations, but now that person who had all that knowledge is a memory that fades away with each passing moment like a ghost. I don’t know who was present when I try to recall specific memories, and those memories are torn plotholes of my former life. My wife, at least I think she’s my wife, cries almost every night. I would cry too if I could remember who she was because it is a condition that never gets ‘better,’ it only degenerates, consuming my thoughts, my dreams, my hopes, and those I love and leaving in its wake a trail of black.