thoughts on experimental health care, drug companies, MS, hope, diet soda, and God (part 2 of who knows how many)

So it’s exacty three weeks today, 21 days, from the time I will be in a hospital in Costa Rica, lying on a bed, and having the ‘liberation procedure’ done on me. And the days are going very slowly by. I’m so unable to process all of the thoughts running through my head on a daily basis. Even right now as I write I am nauseous with anxiety and anticipation of the ‘what if’s?’ On one level I have never been more hopeful for something in my entire life. There are so many good things that can come of this. I am working very hard to try and not imagine what life will be like for me and my family if in fact a lot of my MS issues get left behind here. It’s even hard for me to stay away from making deals with God that if I do get liberated, I will re-commit my body and my life in even more ways than I have already. Yet I know that you don’t make deals with God. God is God.

I’ve also ben known to make promises to myself about all kinds of things around diet and exercise. I have the most brutal habits around these things and yet I’m finding it impossible not to commit to starting jogging if I find that I can actually run again. I used to jog 7km per day 15 years ago. I actually miss it but am not really sure if that’s just my head playing games with me because I can’t currently even run a step, or if I actually really miss it. But anyway, if this works I actually think I’m going to get back at it.

But yet on another level I am still trying to keep things in perspective with the full knowledge that I might go and have this done and not be any better off than I am now when it’s all over. And if that happens, it’s going to really suck. I think this is the part I’m most worried about. While I’m pretty sure I’ll get over it and get on with life over time, I’m also pretty sure that now that my hopes are so uncontrollably high for this that if it doesn’t work out I will have an extremely difficult time getting through the dissappointment of it. I’m quite certain that it won’t shake my faith, but it sure will shake me.

But as for today, I feel like an 8-year old boy wiating for Christmas. And the waiting is absolutely brutal. So much so that I think it’s zapping the energy out of me. I’m always exhausted and working really hard just to stay focused on my daily responsibilities.

Thankfully, I have a few things in my life that are still bringing me joy. My wife, my daughter, my very good friends, and my music. My band, Midrash, have a gig this Friday night and we’ve been working hard to prepare for it. One of the songs we are playing always brings me a renewed energy. I’ll quote it here to end today’s blog.


Your name is Peace, Your name is Peace forever

Your name is Hope, Your name is Hope unending

We are Yours, and You are ours,

And all that’s Yours cannot be stolen away

This prayer has infused dome life in me these past few weeks. And I could use all the energy I can get.

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