Portrait: Ray

A little bit about Ray

Hello, my name is Ray Walter. I'm 24, and I have survived through a hemorrhagic stroke due to a major brain bleed caused by an "arteriovenous malformation," or AVM. 

I often feel embarrassed or ashamed when I tell others my story, but I feel like I need to get this story out for others to read. I hope that if others see the possibilities of recovery, it will bring them some solace. 

On January 13th, 2022, after a week of extreme headaches, I had a seizure and stroke in the car as my mother drove me to the ER. A neurosurgeon quickly identified an AVM hemorrhage and began to operate. A third of my skull was removed so the AVM could be removed, and I sat in a coma (possibly sedated) for a month with a tracheotomy.

The road to recovery 

Once I woke up, my family was terrified that I would be permanently damaged; that I wouldn’t be the person that I had been. One day, though, while nurses were trying to help me stand, they had me sit up and give them a thumbs up to make sure I was ready since I couldn't speak with the tracheotomy. I really didn't want to get up and was annoyed at the time, so I gave them "the flip" (very rude, but I blame the drugs) and my mom was ecstatic seeing this, knowing that it was part of my personality. She told my family and friends that I was still the person I was. 

The most amazing part of recovery that I can remember is being unable to write letters, for both physical and mental reasons, then 3 days later being able to write letters normally.

I spent another month in the hospital, then two weeks at an inpatient rehabilitation to work on physical, occupational, and speech issues, followed by outpatient rehabilitation for the same challenges. After 6 months with a third of my skull still gone, and my brain directly below the skin, I had a perfectly scanned piece of resin attached to my bone to help me with safety and brain movement.   

Navigating new and ongoing challenges 

The main issues I have had to deal with are aphasia, vision challenges, weakness, and seizures. I have always been proud of my abilities of speaking and writing, feeling it was my main strong suit based on my high skills through English and history in high school, and I am often extremely embarrassed when I am speaking to someone and forget words. I also have issues where I say the wrong word without noticing, for example saying "ears" where I meant to say "eyes."

My vision may be my most important issue though. I am about 50% blind in both eyes (both on the right side of each eye), and while rehabilitation and eye doctors have helped me with this significantly, it can still be an issue. I am very slow at reading now even with prism glasses, as it is hard to keep my eyes focused in one place from left to right.

I am always embarrassed about having to read something in front of others and will often pretend I have read and understood whatever I was supposed to have read.  

I have recovered a lot of weakness too, but my last seizure has weakened me again slightly. I began having seizures a few months ago due to scar tissue in my brain, so I am back in outpatient rehab. After finally being able to drive, I cannot legally do so as my state requires me to be seizure-free for 6 months. The medication I take to stop it makes me extremely uncomfortable: it has caused significant memory loss and has activated severe "restless leg syndrome," which causes me to twitch and shake at random times.

Also, this is mostly just an issue I have for vanity issues, but I am always embarrassed looking at myself in the mirror now. My brain is covered, but when looking at myself I can see that one side of my head seems "dented", and my face looks asymmetrical. I also have a massive scar, but my hair covers most of it.

I am still recovering every day and some days I wonder if I will ever "stop" recovering. 

I wonder if my life will ever "progress" to normal adulthood, with my own house, car, and job. I often feel trapped "recovering" by sleeping in the same room I've slept in since I was a child, and having my parents pay for the things I could afford on my own in the past. I feel like I'm not the person I was before all of this happened. I see that I remember parts of that person but knowing that I've lost other things makes me feel like a husk, or shell, of the man I used to be.

Embracing the survivor spirit 

On the other side, I am amazed that I am even alive. I am unable to comprehend the fact that I can stand and walk and see and speak well enough that people think of me as the same person I was. I know that nobody expected me to be the way I am today, and seem to be even more amazed than I am. It also feels good to let this story out as I've had all this constantly running in my mind to the point where I can't sleep. I really hope that it gives someone else hope.

Despite what people expect after a life-changing injury, or I suppose anything, there is always a chance to rise above it.  

I am not saying this is solely my own effort that got me here: I am extremely thankful for the help and knowledge of the surgeon and doctors, the nurses, the rehabilitation staff, and my family and friends for staying with me.

I guess that I really am the "SameYou."