Little by little over the course of the last year I have been robbed of my abilities. Early on, my imagination occasionally overtook my disbelief and ran my mind away with all the dread possibilities of my future. I was sure that at some time I would devolve into the equivalent of a brain in a jar- with eyes to see and maybe a nose to smell, surely tortured by the aromas of food I could only eat, pureed, through a port to my stomach. I imagined a hose attached to a hole in my throat, supplied with enough air pressure to help my weakened diaphragm work my lungs. A catheter, a bed pan. An itchy nose and no voice to complain.
How's that for a wake-me-up?
Maybe ALS moves in gradually so as to allow the sufferer to incrementally adjust to its horrors. To me, the insidiousness of the disease lies in the fact that, while it takes you apart piece by piece, diminishing your abilities one by one, all the calamity aside, I feel healthy. When I'm sitting- as I am now- I feel as if I can get right up and stroll across the room. My legs feel normal, yet they don't work. Also consider that ALS- for me- is leaving nothing to chance. I am saturated.
Aside from the ALS, maybe, surely because of it, I see things in a purer sense. For a while, the world dimmed, rendering a grayness encompassing everything real and existential. Now I see the blue, the green, I embrace the breeze. Strange as it seems to me, I am compelled to take it all in, head back, face skyward.
I will never be totally disabled. I can't say how far this disease will take me and I don't entertain the thoughts of my future any more often than they invade my head. Today, the world is bright and clear, some months ago it was dull. That's an improvement, isn't it?
I'm proud of your improvement dad. I don't know anyone else on the planet that would be able to handle what you are going through with as much composure, dignity, and strength. You always have been and always will be someone I look up to and strive to emulate. I love you.
ReplyDeleteok,here goes my rant! I love you also,in a very special way my friend. You have forced me to open MY eyes also. I have spent too much time in that place no one wants to be,seeing the world only through MY eyes,MY way only. I 'see' as you do now that it is more than just existing for ourselves and not 'seeing' people who need help. I truly draw strength and fortitude and most importantly empathy from just your blogs. You will NEVER be in any way disabled to me,maybe challenged, but NEVER disabled! Sometimes us 'outsiders' never really gain the real perspective of what you AND your family are going through every day. We tend to only see the little picture and never look in the background. Although we are seperated physically by distance,my thoughts and ki are always with you.
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