I feel strings of rusty nails shoot up and down my right side. I’m on fire, struggling to breathe. My head and ears pound. Suddenly, it stops and I pass out.
The next morning, I feel awful, but I function fine. I walk around and converse with my grandmother. It’s my birthday, and a friend is taking me out, so I shower and get ready. I can walk, talk, smile and make jokes. I only have a fever and a headache, neither life-threatening. Yet hours later, several seizures land me in the emergency room. It’s discovered that I had two major strokes the night before. How? I had carried on as though everything was fine.
My memory reset after only a minute. I’d ask someone to repeat themselves because I hadn’t heard them, but once they did, I’d forgotten what we were talking about.
Had I known I’d had a stroke, I would have gone to the hospital. But shouldn’t part of my body have gone limp, or my face drooped? Shouldn’t I have slurred or had blurred vision? Despite the moderate buzz in my head and ears, I was 100 percent.
I also didn’t match any at-risk criteria, or the common conception of a stroke victim: 55 or older, overweight, a smoker. I was a lean, active 20-something who didn’t smoke, didn’t do drugs and rarely had a drink. I did not have high blood pressure or high cholesterol. I didn’t have diabetes or sleep apnea, didn’t take birth control or other hormone therapies.
But as I found out, strokes can afflict anyone, and can take many different forms. May is Stroke Awareness Month, an important opportunity to educate Americans about these facts. This is particularly important to know since getting treatment immediately can make all the difference in survival and avoiding long-term disabilities. It’s also important to know that the aftermath of a stroke takes not only a physical toll on the patient, but an emotional one — and the health care system needs to address that to fully treat stroke survivors like myself.
Strokes are the fifth leading cause of death in the United States, killing 130,000 Americans every year, as well as a leading cause of disability. Whatever type of stroke one has, they all prevent blood flow from reaching the brain. Common results are partial paralysis, trouble communicating and loss of other basic functions, though in many cases some or all of the damage can be overcome with sustained physical and occupational therapy.
In my case, after waking up in the hospital, I couldn’t move or control my left side. I couldn’t grasp things or walk. Eating usually resulted in applesauce covering my face. My memory reset after only a minute. I’d ask someone to repeat themselves because I hadn’t heard them, but once they did, I’d forgotten what we were talking about. I relied on color-coded Post-its so I could more easily keep track of things. My bed was a rainbow paper mess.
I also had trouble speaking. Usually I knew the word, but my brain and vocal cords were disconnected. If the right word came out at all, I uttered it slowly, garbled or as a single syllable. I couldn’t recognize faces; they were just colorful balls of flickering flames. The only sense that remained intact was taste, but I could hardly go around licking everything. The more people in the room, the harder and more overwhelming things were, and I’d become desperate for people to leave.
But it wasn’t just these physical obstacles that I confronted. The terror, shame and humiliation that came from the realization that my brain and body were no longer mine were dehumanizing. Overnight, I went from someone completely independent to someone who could not eat, walk or function on their own. My self-worth had been built on my abilities. Walking. Speaking. Dressing. Laughing. Eating. Appropriate emotional expressions and responses. Acting on my talents and passions. Even the smallest acts that brought me joy, such as dancing, had been stolen. I wasn’t just being robbed of ability, but important pieces of me.
Taken altogether, it made me angry. That anger fueled me. I made a plan to regain what mattered most. I pecked away on my keyboard, writing down my feelings and what occurred that day. I played online Sudoku, word puzzles, chess, checkers, hearts and solitaire — anything that might force my brain to stretch or exercise. Several months later, I regained 60 percent function. All I saw was the remaining 40 percent.
The health professionals I encountered mostly glossed over the emotional impact of strokes on survivors as I went through my treatment, focusing instead on the physical and cognitive implications. Even when it was discussed, it was mostly seen through the lens of the physiological or cognitive causes behind my emotional distress. But I believe the conversation around the emotional implications are the most important. Physiology and cognition are clinical, while to have a stroke is to be thrown into a twister of emotional chaos. To have a stroke is to grieve the person you were, that you might not be again. And to have a stroke is to figure out the new you and make a difficult peace with that person.
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For me, grieving who I’d been while getting to know a new person I already hated for being pathetic wasn’t brain chemistry or nerve firings or failings. It was pride, dignity and starting over as someone else, hoping I might be my former person again, whom, ironically, I couldn’t fully remember anyway.
Physiology and cognition are clinical, while to have a stroke is to be thrown into a twister of emotional chaos.
Grief of the self felt more complicated than any other type of grief I’ve ever experienced. And while grief can directly affect many physical and cognitive outcomes, I never had a medical professional mention this grief to me. It took years to get to the place I am now. If those treating my condition had addressed my emotional state, perhaps I could have gotten there a little faster and a little less painfully.
I was stripped, struggled, overcame to the extent I did, and eventually accepted what can’t be fully reclaimed. If someone looks hard, they’ll see I walk with a slight gait. Sometimes I’ll slur a word, leave it unfinished or switch around its syllables. Sometimes, it’s the wrong word entirely. When this happens, I laugh it off, pretending I’m just “having a moment.” My left side is considerably weaker, but I can still use it and carry things below a certain weight. I can’t write, but I can grasp and type. I can walk. I can run. Most importantly, I can dance. I’m not the person I was, but I like the person I am now.
When you’re relearning how to do, you’re relearning how to be, and who to be. In some ways, you’re the same, but you’re also very different. It took me a decade to accept what had happened to the old me and to embrace who I am now. I took back my life. Even if it looks a way I never imagined before, it’s still mine.