Back to the hospital and confronting loss of independent mobility 9/13-14/2025

 Early Saturday morning (8/13/25 at 4am) I tried to standup next to our bed and my left leg collapsed and I had a hard time getting back up due to increasing weakness in my left arm and leg.  We called my daughter Caitlin to help me get down the 20 stairs and into the car. She does Jiujitsu training 5-7 days a week with weight training too, so she's pretty strong.  Yas pulled the car up and Caitlin helped me get in and we got to the hospital around 6 am. 

During triage they asked me why I was checking in and I had to admit that I was no longer independently mobile... I felt a wave of emotion unexpectedly rise up and started crying for a few minutes while Yas was parking the car.  Caitlin comforted me and I quickly got back to equanimity... It is what it is and I was able to quickly return to focusing on what I have and not what I've temporarily lost.  The weakness is due to brain swelling after my surgery and once the swelling goes down I should regain all my mobility!

At the ER, Caitlin had to go home to get ready for wedding gig with her band, The Femmes, so Yas gave her a ride.  When she returned I was having a Focal Seizure, where my left arm was jerking uncontrollably for a few minutes ... very scary!  I asked Yas to hold my arm and it stopped shaking but also became fully paralyzed.  After 20 minutes, I realized I could move my thumb, and a few minutes later I could move my fingers and later I regained all mobility, but I had lost the learned responses. So to pick up my phone I can't just reach over and pick it up. It's as if I forgot how to do that.  I have to consciously lift my arm, move it toward the phone, open my grip, put my fingers around the phone, grab the phone and continue squeeze it until I'm done. There must be a part of my brain that learns to do that automatically and the inflammation is blocking it.  The brain is such an incredible organ that we often take for granted! 

This experience is giving me a great deal more appreciation for the day to day experience of people who are wheel chair bound and have very little mobility. 

After 12 hours in the Emergency Department, they found me a room on the oncology floor of the Reisman building, where I was 2 weeks ago preparing to have my brain tumor removed. I have a beautiful 11th floor view of the Muddy River area.

TRIGGER WARNING -- messy bodily function episodes below

The nursing staff is amazing. during the night I tried to use the urinal bottle to relieve myself, but couldn't get the top off in time and I wet the bed! My PCT, Amber, and my Nurse, Amanda, cleaned me up and replaced the pee pad and underwear, and more importantly made it clear that this was natural and nothing to be ashamed or embarrassed about. With no strength in my left arm and leg, all I  could do was roll to my left and right as they replaced the pee pad and cleaned me up and changed my underwear.  I'm not used to relying on caretakers for so much, but I'm thankful for their professionalism and their kindness and genuine caring. I also have a better sense of what it must be like to live in a partially paralyzed body, which gives me more respect and empathy for people living with chronic disability while maintaining a positive attitude.  I want to be like them!

I'm under constant observation with neuro tests every four hours and IV steroids and anti-seizure meds twice a day, while they figure out how to reduce the swelling and restore my arm and leg strength and function.  I have an amazing medical team and I'm sure they'll figure it out and restore all of my mobility!  It just takes patience.  In the meantime I'll continue to enjoy and appreciate my life, and be thankful that I can read, and write, and talk, and think, and meditate, and write these blog entries!