What the Past 10 Years of My Life With a Chronic Illness Have Been Like


I can’t help but feel contemplative and nostalgic as the middle of this month approaches.

November.

To me, this month means more than the increasing nip in the air and the changing of the seasons. This year marks the most crucial and drastic change I may ever experience in my lifetime. I can’t remember the exact day, but the middle of this month marks the 10th year that I’ve been ill.

Amid this nostalgia, I tried to look back and remember the 14-year-old me, the symptoms I experienced and the fear and sadness that accompanied them. It feels nearly impossible for me to fully comprehend how much both my illness and I have changed over the last decade.

I could fill a whole library with an account of everything that has transpired, and I
can’t even remember it all. It started with blurred vision, fainting, dizziness, sudden muscle weakness and spatial disorientation that usually resulting in me falling. At first, each of these episodes was utterly terrifying, and then it became commonplace. My vision was affected all of time and falling wasn’t anything new. I knew how to deal with the aftermath, and as long as someone caught me or I avoided any major obstacles when doing so, I would be OK.

When this all started during my teen years, the doctors said they weren’t sure what it was, but it would probably go away with age. The general idea was once I made it past puberty and my body got accustomed to my latest growth spurt, I would bounce back to my super athletic, healthy self. So I waited. And I counted.

The following years jumbled together into a collage of pain and maladies made up of a myriad of symptoms, tests, pills, potential diagnoses, strange diets, hopes for diagnoses, heart monitors, misdiagnoses, weight loss, more and more pills, hair loss, canes, proper diagnoses, hospital stays, weight gain, getting my hair back, more tests, wheelchairs, emergency room visits, physical therapy and so much more.

No matter what each year brought, I always took a moment in November to acknowledge this gloomy anniversary of sorts. I would look back and contemplate what all transpired with my health and how I felt about it. Here is a simplified, year-by-year breakdown of those reflections:

First year: Whoa. Just whoa.

Second year: My twin sister and I tend to joke about my illness. We’ve lovingly named the bugger “my kryptonite.” This makes me feel powerful while in a pretty powerless position. Not even Superman could triumph over kryptonite, so there’s nothing wrong with the fact that I can’t seem to beat this for now.

Third year: Tears. Why aren’t I better yet?

Fourth year: OK, this thing, whatever it is, is here to stay. I think I might actually be at peace with that. We’ve co-existed so far, so acceptance must be the best place to go with this. Perhaps it could get a tiny bit better, though. Oh, boy would it would be nice if I only had to deal with the symptoms I had when my kryptonite first burst through the door of my life and announced its arrival. Right now, things are pretty intense with bouts of unexplained paralysis, weird episodes that the doctors think might be atypical seizures and all sorts of uncomfortable and extremely painful sensations in my entire body, and I’m not necessarily the biggest fan.

Fifth year: I have a few solid diagnoses, and I know for certain that this will be with me throughout the rest of my life and probably get worse with time.

Sixth year: Oh, my goodness, you survived another year! It may have been hell, but you’re here, despite your body’s attempts to end up elsewhere. Excellent work!

Seventh year: Yay! You’re still around, and you seem to be doing better. Things definitely aren’t perfect, but you’re off pursuing your dreams and that’s amazing!

Eighth year: Uh-oh, it looks like things might really get bad again here soon.

Ninth year: Things are rough, but you’re doing amazing and should be so proud of yourself! You’ve been out of your wheelchair for two and a half months now, and that’s all because of your hard work.

10th year: Holy zebras, the moment I realized it’s been 10 full years since this all started, emotions bubbled up all over the place. And here’s the kicker: I was pleasantly surprised by their nature.

They contrast starkly with the negative feelings of those first few Novembers. Instead of sadness, fear or frustration, these are more positive. 

I have an enormous sense of pride. I’ve been doing the best I can despite pretty intense limitations for 10 whole years. That shows perseverance and strength. My body itself may not be very strong, but its progressing weakness has helped shape me into this extremely passionate, inveterate and motivated person. I am filled with joy at every little thing I accomplish — from opening a door to managing to get out of bed for a few moments on a bad health day — because I am so happy my body can still do those things.

This, in turn, makes me all the more happy considering the bigger things I have had the privilege to accomplish. I’m so happy I can work, especially as a teacher, and also that I’ve finally found the words and courage to share my experiences with illness with others.

Although I see this 10-year mark as a major personal milestone, I hope that I’ll hit 20 years, 30 years and even 40 years of living with my chronic illness. Because the thing about my illness is that there is no cure, and no matter how long I live it will always be there.

If a cure were to be invented, I would be absolutely ecstatic and immediately undergo treatment. However, if I was suddenly granted magical powers, I would do absolutely nothing to erase the fact that I was born with this genetic condition or change what’s happened since it first reared its nasty head 10 years ago. I wouldn’t even consider it an option. Yes, these past 10 years have been difficult, painful and terribly frustrating, but through all that I learned resilience. I don’t know how I would’ve turned out if I didn’t have my illness accompanying me and pushing me in all of the directions I didn’t really want to be pushed. My illness has played a massive role in how I perceive the world, and I believe that perspective is one of the biggest gifts I have.

I have no idea who I would’ve been if my reality had been a kryptonite-free one, and I prefer not to speculate about it. In general, I’m quite pleased with how my life has turned out. Do I wish it was easier? Oh, my goodness, yes. Occasionally, there are days where I’m burn-the-world angry, and I want the fire that feels like it’s decimating all of my limbs to jump out.

But most days, I can be happy with my lot in life, kryptonite and all. Because right now, I’m zebra strong — one whole decade long!

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