Aliza One-Year Stroke Update
I wanted to give you an update about how I’m doing. Lots has happened since the last big update.
As you know, on July 25th, 2011, I was hospitalized with a stroke. I spent the fall and winter recovering, and in March they did a cranioplasty to replace the missing piece of my skull.
To get you up to speed, this winter I did a lot of recovering. In December, we had Wreckage, the TraniWreck contest show. I performed as Heywood. It took everything I had to keep going that night; it was hell but I loved it.
In February, we had the Birthday TraniWreck because Johnny Blazes & Heywood both have birthdays that month. I performed in my helmet but not as Heywood. It went well, but it was very exhausting.
After the cranioplasty, I had a very dramatic recovery of the motion and strength on my right side, which was affected by the stroke. My head felt good, knee felt better, hand felt good – it started just a few days after the surgery. It’s going to be all right, I thought. My hand started working better for the first time since the stroke in July 2011. This was a good time. I felt like I was recovering fast & doing really well.
Then, I took a break and went to P-town in early April. I passed out while I was working there, but I didn’t remember until later. Later in April, I started to pass out again when I was at the gym, but I just sat quietly until I felt better & didn’t do anything about it.
On May 7th, I passed out at the gym for real & got taken to MGH in an ambulance. They kept me for the 8th & 9th and they did an EKG to see if I was having seizures. The wires on my head from the EKG made me look like a smartypants. Ultimately, they couldn’t figure out what was wrong, so they sent me home & said I shouldn’t drive. I started to struggle with speaking after this hospitalization.
On May 22nd, I had another bad stroke.
I was at home, typing on the computer late at night. But my arm and leg on my right side started drooping and feeling weak. I asked my roommate, “do I sound funny?” E said yes, so I asked them to drive me to the hospital.
Ironically, earlier that day I had posted about two ambulances being outside of my house. And then I assured everyone they were not for me.
We went downstairs to get in the car but E said they don’t drive stick so I decided to drive to the hospital. We were already in the 93 tunnel when we realized the car is actually an automatic, but I kept driving. When we got there I realized that I never noticed where the emergency room door was before, but we found it. I got out of the car & told E to take it home, & to take care of Springfield as long as needed.
They held me on the Neuro ICU floor for a while, until I was
stabilized. They did a bunch of tests and figured out that I was having another episode of bleeding in the same place as before. The cause was a venous cavernoma, which is a malformation of the veins in my brain.
One sad thing is that my camera was stolen out of my hospital room at MGH, so I lost all the photos I had taken after the end of September 2011. If you have photos from that time please send them to me!
We started discussing having a major brain surgery, where the doctor would go in and take out the cavernoma. They said there was a high likelihood that it would keep bleeding, so that seemed like the best thing to do. We scheduled the surgery for June 1st. They wanted to wait for my brain to stop swelling before they did the surgery, so I was in the hospital for 9 days beforehand. The surgery was scary but
it went really well; I was told that the surgeon is one of the best in the country. Clearly we should have done this surgery before the second stroke! Oh well. After the surgery, I spent some time at MGH recovering.
Then, I was transferred to Spaulding for two and a half weeks for rehab (physical, occupational, and speech therapy, as well as other classes). Spaulding is probably great if you're dying but it wasn't so good for me. Sorry. I know that's not polite. When I first got there, I was going for long walks by the river, which was really nice. But a few days after I got there they put an alarm on me & wouldn't let me off the floor without permission because I wasn't wearing my brace.
On June 19th, I was released from Spaulding to go back to my house. Yay Springfield! It was good to see my cat and my plants again. When I was first back home, they said I had to have someone with me 24/7 again, but this time we didn't do it as much. Susanna was with me a lot in the beginning, and other friends also helped out. Pretty soon I was feeling much stronger and decided I didn't need it anymore.
Halfway through my time at Spaulding, I started wearing an eyepatch. When the stroke happened, it damaged my vision. The damage was in both eyes, but the left eye was better so I wore the patch over that one to try to make the right eye stronger. It was hard to wear it because every time I wore it people would ask about it. On July 18, my neuro opthamologist said I don’t have to wear it anymore because it’s not helping.
Now that I'm back home, I'm spending my time working on rehab exercises again. I was making good progress before the second stroke, so lots of this feels like backtracking. Right now I am supposed to be going to Spaulding two or three times a week for OT, PT, and speech therapy, as well as sometimes going back to MGH for more speech therapy (I just can't get enough!).
I'm in the process of trying to get back into going to massage and acupuncture appointments, and all the other things I was doing before this last round of hospital stays. I'm doing a lot of work on the right leg to help it be as strong as the left leg; it's not there yet but I'm not wearing the brace any more, and I hope it will get there someday. My right hip and shoulder are getting cortisone shots because the weakened muscles cause inflammation. My right hand is improving steadily; it's not as good as before the second stroke but it's doing well. My vision is still damaged, and though it seems like it might get better it's not clear how much.
The biggest thing I'm struggling with is my speech. When they did the surgery, they had to cut through some parts of the brain that deal with speech, so between that and the second stroke I had a big setback. Also when they did the surgery, they had to leave part of the cavernoma because it was too hard to get to. So we're just hoping for the best.
I have aphasia, which is a speech disorder (www.aphasia.org). When you see me, I can usually say a few sentences fine, but after that it is much harder and takes a long time, so please be patient. It makes me very upset. It is overwhelming. If I didn't have aphasia, I would be fine. I could deal with the physical stuff. But the aphasia makes everything 100 times harder. I hope to get better.
The 25th, this Wednesday, is the anniversary of the first stroke, and I thought I would have a show to celebrate my recovery. But with the aphasia, I think that we will have to shoot for February to do a birthday show. Mark your calendars!
To my friends: thank you for being in touch and helping me out during this time. You are amazing. To everyone: thank you for being out there in the world and following my story. I really appreciate your support. I would love to be out in the community more, so give me a call and we’ll figure it out. Please feel free to share this with everyone.
I know that there’s lots of stuff out there that I don’t know about, like speech therapy software. So if you have thoughts about resources that could help me in my recovery, please let me know.
And as ever, if you would like to donate, you can do so here:
(Thanks to: Dora for interpretation and typing, Brain Trust folks for posting)
PS: I also just found out that my landlord is selling the building I live in. I don't know yet if I will have to move out, so I will keep you posted.