I wanted to give you an update about how I’m doing and what’s happening for me over the next few weeks.
I’m going into surgery on March 7th to have the bone flap placed into my skull. This doesn’t mean much to many people. “Bone flap” is weird and kind of gross sounding. That’s the way I roll! Seven days after my initial stroke, on July 25, 2011, they had to take a piece of my skull out so the brain could expand, and I have been living without it since. This explains my gorgeous helmet and the need for the flap.
Choosing surgeons took a long time. I couldn’t have one until 6 months had passed because of the skull scares. There were two teams I was interested in. I realized I wanted it done as quickly as possible, and that means the faster jerks do the work. (I hope they aren’t reading this!)
The last few months have been challenging. Staying on scheduling, balancing with friends and taking care of my body…major challenges. September and October had more energy and fun for me. It takes so much time, dealing with all of the medical people I have to see each week. Here is a sample schedule for my weekly appointments:
Physical therapy for my leg @MGH: 2x/week
Physical therapy for my shoulder @MGH: 1x/week
Occupational therapy @MGH: 2x/week
Speech therapy @MGH: 2x/week
Yet more physical therapy at Coolidge Corner: 2x/week
I go to the gym 5x/week for 3 hours per day, unless I’m too tired or injured.
Generally I have doctor appointments 1x/week
Psychotherapy, because I need it! 1x/week
And I am supposed to do two hours per day of hand rehab at home
Occasional massage session.
That’s almost 20 appointments per week, with 14 hours of physical therapy exercises to do at home on top of that. The amount of time it all takes is huge. I eat lunch at Whole Foods (cheap I swear!) a lot, sorry don’t hate me.
Part of it is remembering the *whole thing* I’m going through, instead of just remembering daily things, remember the whole thing. That’s the hard part: cyclical. Incorporating the evening too, hopefully that will add up to a fulfilled, healthy life for now. (not sure this is clear, but I’m hoping…)
There is the issue of the heath of the right side of my body. People say a stroke starts healing from the time it is over, but I don’t believe it. My right side is difficult and continues to be. Foot, ankle, calf, knee, hip, arm, shoulder, hand…all problems in different ways. I guess the biggest one is that it seems like I’m losing use of my hand. I’m hoping at some point I get ahead of it, but right now it doesn’t feel like it.
I am still struggling with the thing I can’t say: aphasia. It is ironic that the word aphasia is so hard to remember and say — when it’s about how I can’t remember and say words. This is just brushing off the dust — it’s difficult to get all of it out with the aphasia.
But everything isn’t all dramatic!
We miss Duncan epically, he was such a prince. And I have the amazing cat, Springfield, who is taking care of me.
I have lived through multiple strange interactions with people and their reactions to my helmet. From videotaping me in my car, to multiple commentaries about random bike accidents, and people giving me funny looks. Yes, I’m the guy with the helmet. Get over it! (and yes, I‘ll be happy to be without it!)
Dr. Sketchy is going strong and everything with that is great. Big thanks to Johnny Blazes for taking over, with the help of Porcelain Dalya and Allix Mortis. They are continuing to help out while I am recovering and I’m grateful.
It’s been challenging to have the two TraniWreck shows but overall I was happy to have the opportunity to perform, and for all of us performers to get out there and interact with the audience. It’s a new challenge for me to perform after the stroke, and the cast has a new challenge of dealing with me as well. We’re looking forward to creating new TraniWreck in the future.
I want to thank all of my friends, acquaintances and etc. for support and love. And to those who have given funds, thank you so very much! I’d especially like to thank Susanna and Dora for helping me so much, whoa, yah.
Getting ready to sign off, but before I do I want to mention a couple of things. First thing is that I’m going in the hospital Wednesday March 7, 2012 for a few days. Then I’m out and will be at home a few weeks. If you’d like to help with food please email firstname.lastname@example.org. She can tell you if/what we need. And if you want to donate something it’d be more that welcome.