What a day yesterday was!
This has been the hardest blog post for me get going with. I’m just going to start right off with why. I am officially in the ALS phase II stem cell study at Emory. Even though I’m officially in the study, Dr. Glass made very sure I am aware that between now and the surgery date, which has yet to be set, I must continue to meet all of the very strict criteria, I can still be dismissed from the trial as late as the day of surgery. I was also reminded and made very aware of how dangerous this can be. Messing in any way with the spinal cord is in no way to be taken lightly.
I’ve never felt quite like this in my life. I feel frightened and elated at the same time. I also feel a strange sense of guilt. I know many people want to be in this trial. I try to remind myself I didn’t win a trip to the moon. I was given an opportunity to help move research along at great risk to my health and even possibly my life. Knowing so many others would gladly do the same is still what gets me. It’s still the day after and I am still coming back into myself.
I am going to stay focused on keeping myself in the best health I can be. I will take care of my body, follow every order or even suggestion given to me by Dr. Glass and the study team regarding this. If not I don’t think I would be deserving of it. I’m doing this for all of us and for all who have lost their lives to ALS. I’m taking this very serious.
Please don’t get me wrong. I’m not trying to come off as I’m not harboring a small light of hope that I will get some sort of benefit from this particular surgery. I wouldn’t dare insult your intelligence in that way. However, this is still a safety trial. I am taking a huge risk.
Anyone who really knows me can tell you through my life I’ve always said my biggest fear is to be paralyzed. So being diagnosed with ALS was like my worst nightmare coming true slowly. I’ve tried finding comfort in knowing it doesn’t affect sensory, but as we all know, that is a double-edged sword.
I will be taking care of myself but I’m still going to be myself. I still have other things I will continue focusing on. All this will continue as usual. To be honest I’m telling this to myself just as much as you, my readers, right now. I also know it’s true. I’ll continue blogging, preparing the “show” I’ve been working on for my family, my documentary and every other project I have going on. It’s been keeping me going since my diagnosis.
Yes, with it being so new, I’m adjusting. I know me and within a couple of days this will be something else I’m participating in for the purpose of ALS. More in the forefront of my thoughts at times because of all that comes with it, but another study nonetheless. There is nothing any of us do that is too small for this war we’re in with ALS. Everything counts.
I will keep you up on my feelings but I won’t be blogging specifics of the study after surgery. I’m not the only person in it, I’m not in charge or aware of exact outcomes so therefore It’s not my place to share what I don’t know. My blog is still about me and how I’m dealing with ALS, that’s what I’ll continue to share with you.
As I said, I’m still taking this all in. I hope I’ve explained myself well about how I’m feeling right now. I’m not a professional writer. I do love to write and I’ve found a great outlet in blogging.
I also said I’m still me, this is another day in my life. I’m about ready to have dinner with Tony. I’ll watch my favorite show, Big Brother, then I’ll surely have to rock out to some Rolling Stones!
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Until next time, take care,