I am a young stroke survivor & this is my story. The night after Christmas 2016 I called Phil (then, my boyfriend) to say goodnight and I remember telling him, “I had a bad brain day.” The funny phrase “bad brain day” found its way into my vernacular after my sister heard a woman say it about a year prior and it became a joke between us. Now, those words haunt me knowing what came next and how on the nose the words were. Bad brain day indeed.
Now, those words haunt me knowing what came next and how on the nose the words were. Bad brain day indeed.
In the next 12 hours I (temporarily) lost the use of my entire left side, flew in a medical helicopter from one hospital to another, signed a paper for treatment acknowledging that in the doctor’s attempts to save my life I may in fact die or be left severely impaired, and ultimately underwent a thrombectomy. It may surprise you that I remember it all– I was coherent until the surgery. I even remember the anesthesiologist.
The honest truth is that until I came home to my apartment in Chicago weeks after my stroke, after my inpatient rehab, I did not know what being a young stroke survivor meant medically. I was too chicken shit to ask. All I knew was that it was a big scary deal and that it was for “old people.”
So when the first hospital told me I was having a stroke and I needed to be “auto advanced” I only asked, “What is auto advance?” And the answer was a helicopter flight to a bigger hospital. So naturally, my reply was “Like a six flags flash pass. Cool!” Why wouldn’t I be making jokes? I was still me and a helicopter flight sounded cool.
The warning signs
The warning signs were there. But I didn’t know them to listen.
I started this blog with two hopes: 1. Be a voice in an underrepresented community of young stroke survivors to offer hope, connection and normalcy. 2. Educate others of signs of stroke to make recovery for independence possible should someone they know need help. I hope this post helps with both points, but let’s knock out the second point right now.
The Signs of Stroke fit into the simple acronym of BE FAST
T- Time is crucial. Call 911.
When dealing with pain I would say I’m pretty strong, but I do vocalize discomfort to try and get through it by groaning or saying OWWWww. But, the pain I was having from a headache the night before my stroke was no match for me, and it broke me down to tears. Also, based on issues I was having with my vision, combined with where my headache was concentrated (behind my right eye), I thought it was something to do with allergy issues. I was out on a farm in Ohio and I have fairly severe reactions to certain pollens.
It wasn’t until I had issues with movement and my face showed droopage that my family realized what was happening. Luckily I was able to get treatment quickly enough, and I was otherwise “healthy” before the stroke which all aided my recovery.
Medical science is incredible.
The surgeons went through a tiny ¼ inch incision in my groin up all the way to my brain to remove my blood clot. When I woke up in the hospital I was trying to figure out if I had brain surgery because they were showing me brain scans.
When I knew I’d be ok
One really strange aspect of my case was that I was spasming and convulsing through my entire body until my surgery and felt so cold. About a day after my surgery, I had a test to establish if I had been having seizures. The seizure test left my scalp and hair full of a nasty waxy goop. The nurses in the ICU were kind enough to give me sponge baths, but the hair situation wasn’t getting any help.
A day after I was transferred out of the ICU and onto the neuro floor I was allowed to take a shower. I’ll take a moment here to acknowledge that its incredible that I was strong enough to stand on my own and shower that quickly (a matter of days) when others work toward this goal over years. I had a nurse help me walk to the shower and stay standing outside incase I had any issues.
The shower was a turning point for me. It was the first time I cried. I didn’t cry because I was scared, or mad, or feeling sad for myself. I cried because I knew I would be okay. Finally, I had done a major life thing, mostly independently.
I cried because I knew I would be okay.
Still, I had no idea what was ahead of me as a young stroke survivor
On Instagram I responded to a friend that “I had a stroke [5 days ago], but I’m getting stronger everyday.” That is incredibly laughable to me know. As if I had a cold and it would only take a few days to be back to my life. And it’s what I actually thought. I was fortunate to think this. The best gift I’ve ever been given is that no one gave me fear when I was in the hospital. So I simply wasn’t fearful.
The best gift I’ve ever been given is that no one gave me fear when I was in the hospital. So I simply wasn’t fearful.
My family was incredibly strong and I’ll forever be thankful for that strength. All I knew when I was recovering from surgery in the ICU was that my family was there smiling. Plus, I could do the small tasks the doctors asked of me, so they ensured me I was going to be fine.
The sobering realization of how fortunate I was to get help as quickly as I did
At my inpatient rehab there was another young woman, also 29, who had suffered a stroke. In the physical therapy room I was walking laps and working on balancing exercises when I was introduced to her. It took me a moment to realize that she could not yet walk. We partnered together for an upper body exercise. I wish now that I had made a stronger connection with that woman to keep in touch. If I had, I would certainly reach out to see how she is now.
Life as a Young Stroke Survivor
Of course that’s not the end of my stroke story. It will effect everything I do, moving forward, including understanding do I want to risk having children. Everyday I get to wake up will continue to be part of my recovery. And I’m so freaking grateful for that and to be a young stroke survivor.
Do you have a stroke story or know someone who has experienced one young? Are you a young stroke survivor? Let’s connect! please share your story!
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