PWDs in the Philippines

[OPINION] I had a stroke at 19. Now what?

Ingrid Delgado
[OPINION] I had a stroke at 19. Now what?
'What I wish more people realized is that feeling sorry for someone isn’t the same as understanding their circumstances'

This is not a story about hope. 

In fact – and this is the first time I’m going to say it – I’m very, very angry. I’m angry because my left fist won’t open; I’m angry because I now walk with a limp; I’m angry because I can’t even put on a bra or tie myself a ponytail. 

I’m angry because it’s easier to be angry than to acknowledge the loneliness that comes when your whole life gets altered overnight. 

I was born with a brain malformation called a cavernoma, which allows blood to leak into my brain and cause hemorrhages and seizures. The disease doesn’t present obvious symptoms, so it remained undiagnosed until I turned 18, when it showed up in an MRI scan. Despite the diagnosis, my doctor allowed me to proceed with my first year in university, but it wasn’t until before the second semester that my cavernoma began making itself felt. 

A day after Christmas, I woke up with a piercing headache that never quite left. My arms and legs began having uncontrollable tremors, and my shoes started slipping out because my toes were no longer holding them in. These were the first signs of hemorrhage. When doctors called it a stroke, I couldn’t bring myself to do the same. I never even thought strokes happened to young people, and now here I am being told that I just had one. I don’t know what I thought a stroke would feel but I didn’t think it would be like gradually parting from your body.

Weeks after I was hospitalized, people were quick to tell me that I was “so strong” and “so brave.” They didn’t have to though. I could give myself that credit because I know how tough and ugly those early days were. There were the excruciating headaches, the endless IV lines, and the emotional weight of being a healthy young woman one day then a diaper-wearing stroke patient the next. 

Every waking moment was like having someone drilling the insides of my brain. When this happens, I could only hope that the few contents of my stomach wouldn’t end up in the toilet. The only relief I’d get was in the form of steroids which mess up my hormones. They make my face swollen, my body fat, and my face break out.

As time went on, I realized that it’s much easier to be strong for the medical stuff than it is to face what lies beyond them. 

I had a fast-paced life before the stroke. I put much importance in my academic pursuits. I was a dancer for many years, and a student leader for even more. I chased opportunity wherever I found it.

And then I was asked to take a leave from college. 

I decided that I would start thinking of recovering from my stroke as another achievement to be had. It gave me a reason to be grateful that it was difficult to bear; I enjoyed the agony because it allowed me to feel like a bigger person. This twisted need to feel pain for self-validation made me realize that I’ve somehow internalized the idea that life is something to be earned. 

“You’re on a journey,” is what my doctor told me one year after. He says that I’m not exactly healing yet and that it would take more years to see if I could make it to the 30-60% recovery rate for most cavernomas – that is if I don’t succumb to another stroke during the wait. 

With that, nothing’s really sure for the next 4 or 5 years. 

People constantly remind me of my age as a way to console me, as if being young is a one-way street to recovery. I wish this was as comforting as it had been intended. But as a woman constantly told by society that my biological clock is ticking, and living in a world where women are given stringent timelines, my 20s are exactly when I should be getting things done.

I used to have my life laid out on a road map: finish college in 4 years, then law school. Now my road map laughed in my face. Waiting to see how life turns out leaves you with a whole world of if onlys. If only I didn’t develop this abnormal blood vessel when I was a fetus. If only I knew how to avoid the stroke. If only life worked out the way I always hoped it would. 

There is also the matter of feeling like I’m an additional weight to carry – a feeling I detest because I hate being a burden on anyone. Although I never heard a word of complaint from my parents (heaven knows they’d drive over a cliff just to take my illness away), I know that this isn’t a cheap disease to have. My initial radiosurgery had cost almost ₱200,000, my brain scans are never cheaper than ₱10,000, then add the fees for my rehabilitation, and the cost of steroids and drugs that I’d need every time I’d have one of my migraine episodes.

Up until my stroke, I thought I already knew what it must feel like to be physically limited, but it wasn’t until I became a part of the community that I truly saw the degree to which our needs could be misunderstood. I’ve lost count of the times I’d get frustrated when people insist on doing things for me when I’d already said that I could manage. I know this instinct to help probably comes from a place of good intentions, but it somehow encourages me to think that I do look helpless and pathetic.

What I wish more people realized is that feeling sorry for someone isn’t the same as understanding their circumstances. 

The only reason I could enroll this semester is because we’re offered remote learning, which is a dream come true for people like me who have mobility issues and epileptic tendencies. I’m not grateful for this pandemic but I sometimes think about how accessible so many things, especially education, would be to people who suffer the same conditions if the greater part of humanity made an effort to understand our needs. Will the adjustments made for our pandemic-stricken world hold even when the situation no longer threatens our able-bodied counterparts as much as it does now?

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Having this stroke isn’t a “life is short” moment, but more like a “life is hard” moment. I realized that it didn’t matter if the stroke came at 19 or 30 or 50; the sadness and despair would eventually come, just the same. Something bad is bound to happen to everybody. 

I cling to the odd comfort of knowing that a stroke at 19 can’t be the worst thing that will ever happen to me. 

See, maybe this is a story about hope after all. 

Only now, hope isn’t just smiling through the pain anymore but allowing myself to feel every ounce of it and still finding something worth fighting for. I learned a tiny secret too: people are only brave because we have no choice – it’s what survivors do to survive. – Rappler.com

Ingrid Delgado is a Broadcast Communications student at the University of the Philippines. When she’s not writing news for her college paper, you can find her watching Mamma Mia! for the 50th time.