Have any of you wanted to know what I thought of as the worst aspect of ALS? Don't lie, don't worry your inquisitive nature with any prospects of my discovery. We all have our dark thoughts, our deep excursions macabre, our occasionally surfacing morbidity. Truly, I share with you whether you can admit to your curiosity or not. No easy task lies before me as I contemplate upon my contemplations these many months, considering my plight as I slip and slide, clutching at air, hope diminishing as the disease continues to manifest itself. Today i find myself struggling with the apparent failure of my medication. To date, I have found myself in a better physical state with regard to my spasms after having eliminated the drug designed to ease the symptom. My mood leveler drug, costing hundreds a month, did little more than dull my emotions and is no longer taken. The new Wonder Drug my neurologist was so excited about last month turned out to be a phase three bust, drop kicked and discarded. Apparently, Rilutek was messing with my liver function, requiring me to relegate the $16,000 a year pills to an increasingly large dope graveyard. Even with all the talk of ineffective drugs, I cannot honestly say that I hold a grudge, citing my low level of expectation since my first encounter with ALS. My real dissapointment lies within the realm of communication, or, more accurately, in the lack thereof. I can no longer speak well enough for all but the most intuitive to understand. I can no longer defend my position. I haven't the ability to alter one's notion of my mental state. This i hate. Despite all condolences, all support, all contrary takes, this latest development is the worst so far. I could live life in a chair as long as i have a voice ; without one is close to untenable. What's next?
Tracy, you may not always know if we are reading your posts or not but we are. We have you in our hearts and prayers and will continue to pray for a miracle. You have gone through more than I can imagine, and yet you have managed to keep strong and help us stay strong through all your posts. Thank you for sharing Tracy and keep holding on to the faith and hope my friend.
ReplyDeleteWe are reading your posts Tracy. I can see here that you haven't lost your "voice" at all. You will just have a different method of getting your point across. Maybe that will give some people a few minute head start to run in the event they should! haha I thought about you guys while you were in SA. Wish we were there too.
ReplyDeleteyour thoughts parallel mine too closely! I sometimes wish I could be that type of person that ALWAYS sees the 'silver lining or the cup half full'. truth be told, for every injury I have ever had, I always explore the WORST. I 'see' that in your case, my worst nightmares have somehow manifest themselves in you instead of me. I do not mean for this to be taken in a 'shallow' way, its just my thoughts on a subject that I have spent more time on than most. Even in the 'beginning', my thoughts always came to this point where everyday life becomes not only mostly impossible, but most importantly a burden to my family. you give me more strength and courage than you will EVER realize and I am proud to be a small part of your life.
ReplyDelete