My Ramblings
I recently watched an old episode of House that was about ALS; it’s a strange thing to have an incurable diseases and hear it spoken about with such candor, especially on TV. It was the only show I had ever seen that tackled this particular sentence until yesterday when my favorite show, Scrubs did an episode that touched on ALS. By the way, I thought it was really well presented, however they don't tell you the whole story (obviously) just the suicide perspective which I stared into the face of at great length. For me it came down to the question of trust; specifically that, although I felt at times, hopelessly impotent and weak to carry such a burden, I chose (indeed I still choose) to believe that The One who called me into this world, has been my Everlasting Father, providing me the strength to meet this challenge with a measure of tenacity that I do not possess.
From my limited grasp of peoples’ familiarity with ALS, it still seems to be a pretty unknown disease. I, for one am glad that more people don’t have to suffer this type of end. I got to thinking about it; I bet that the family and friends of one so sorely afflicted do more to raise awareness than anything else. Even though I had heard of the Police Run, I confess that I didn’t know who the sponsors were until after it hit me.
Just think how many people had absolutely no idea what ALS was who now know a small portion of the anguish that accompanies a diagnosis of this magnitude through contact with my story.
I have learned much of my own ability to grieve the celerity of immobility and the resulting loss of interaction that has accompanied it. It has made the process of grieving much more real; I can see in different ones, the various stages in remarkable variation of intensity; I imagine that is probably in direct correlation to the depth of feelings shared.
And I must say that we humans do the most curious things.
Some use their grief to jam an agenda down my throat. Some use my suffering to advance their own support, using my circumstances to find sympathy for themselves. Others act like I’m dead already or that I am somehow less aware now that I am non-verbal. Some live in denial or anger or any of the stages of grief.
The funniest response to my condition was when a well meaning person, speaking slowly and forcibly, inquired of the person standing beside me, “CAN HE UNDERSTAND WHAT I’M SAYING!!?” as if just being around me made others dull and hard of hearing.
I have learned to appreciate the funny moments!
Overall, many people are ill-equipped to handle death; or should I say the process of dying.
I consider myself quite fortunate to have so many close friends and family who are well adjusted and have figured out how to just be themselves around me.
I apologize for the disjointed thoughts, but WYSIWYG!
Peace, and keep your fork.
Hilarious - of course you can hear!!!!! Its like the lady who asked us about our twins... "Are they twins?" and "Were they born on the same day?" Now there's a bright one for you...
cheers
Laura
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Ahh , you speak so eloquently my friend.... we did get to watch that episode of Scrubs last night. Glad I could watch it with you... even though we laughed at the silly humor on Scrubs, they manage to bring out the reality of life and how each one of us reacts to it... I often ask myself " how do i respond to your journey ? " I do know this... I have discovered again that life is to be maxed out while it can be.... to never let fear determine how one lives... my friend ... each day that i come by .. i think it might be my last ... and one of these days it probably will be... your body is tired and has fought the good fight... as i've said before, i'm blessed to have you as my friend... and strangely through this journey , I've gained a whole new family... Your mom and dad, Douglas, Amber, Mike and Brian and their own families wow what a blessing... Very soon the greatest miracle will occur... you will be whole ... once again basking in the most complete presense of your creator... amazing... Bud, I get jealous... So.. as I watch you becoming physically weaker ... I see your spirit growing stronger... Your inability to use certain muscles to indicate how u feel... is replaced by the twinkle in your eyes as you wink.. and in the words you use... thanks my friend ... you have taught me much about LIFE and for that I am forever grateful
cheers
alvin
ps.. you still owe me ribs at Lous
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"God doesn't need another angel."
J. Denny Weaver mentioned recently how lame our comforts can be to those who face tragedy... some of those being scapegoating God. e.g. "Oh, your daughter was abducted and murdered? Well, there, there. God needed another angel." Good intentions aside, sheesh!
Weaver calls us to understand things like ALS as tragedies that are NOT God's vehicle for your final journey. Nor is it about which hoop you've failed to jump through (like the healing would come if only you would...).
Rather, we stand with "Christus Victor" and we stand with you and say, "I will oppose this disease and apparent death and, until proven otherwise, expect victory."
Granted, I don't always feel like we're going to win. (A psychological form of faith in my faith that I don't have much faith in). Rather, the faith I bring to the table is, "Even when it feels like we're getting trounced, what are we supposed to do? Abandon our hope that Jesus may yet heal? Live in denial that he might not? NEITHER. Though the fields are bare and the olives are not on the trees and the vines and barns are empty, yet I will trust. I will leave rejoicing OR grieving for another day. Today we fight, even when Steve can't."
Maranatha
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