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5 Things I Wish My Teachers Knew About Life With Mitochondrial Disease

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I’m not a student. Not any more. But my youngest son graduated from high school just a few years ago and received his mitochondrial disease diagnosis during his sophomore year. Between his experiences and mine, I created this list of things I wish teachers knew. In reality, these thoughts apply to more than just the school setting, like my faith community, the swim coach, and the after school music director.

So, if I had a captivated audience, I’d explain:

1. I’m not making this up.

Living with an invisible illness, like mitochondrial disease, poses a unique challenge. Most days I look normal, healthy even, especially since I’ve learned to live within my limits. But I’m not normal. Not even close.

If I engage in after school activities or complete extra assignments at home, my energy level depletes at a faster rate than most. When I get too tired, my legs grow weak. My double vision gets worse. My facial
palsy may even show. And I crave a very long nap.

I may or may not ever exhibit those symptoms in your class. But they are very much a part of who I am.

2. I want to join in.

Many after school activities require an energy output that I can’t afford. While I understand accommodating my needs may require extra effort and in some cases, may seem impossible, finding ways for me to
participate would mean more to me than most.

I want to fit in. To be like others. To share who I am in our small community. Stretching the rules on occasion to allow me to participate would stir a deep sense of satisfaction — the kind I crave but often feel unable to experience in the confines of our busy, cranked-up culture.

3. I wish others understood.

Since my symptoms vary from day to day, my peers often don’t understand my illness. While some people would rather hide their struggle, I find it helpful to fully communicate what’s going in an effort to bridge that
gap. So, if there’s ever a way to include a creative presentation within the parameters of your given curriculum, I would accept the challenge.

While others say, “Knowledge is power.” I say, “Sharing my knowledge empowers me.”

4. I need accessibility.

When planning field trips or overnight stays, researching the handicap accessibility of each location is paramount. In America, we often assume that restaurants, hotels, museums, and retreat centers meet the needs of the disabled. While building codes now require such accommodation, updates to older buildings leave some places much harder to navigate than others.

For instance, when visiting New York City while recovering from ankle surgery and using a knee scooter, I was surprised to learn that some restaurants won’t allow strollers or medical devices indoors. One famous place insisted I leave my scooter loose on the street. Unwilling to lose the necessary device, I pushed back and was eventually allowed to store it near a hostess while we ate.

It takes a measure of thought and pre-planning. But when possible, that forethought makes my time in unfamiliar places easier to enjoy.

5. I may be absent but I still care.

My illness may require I take extra time off from the rigid school schedule to rest. That said, sometimes I struggle to know when I should push ahead versus take time to allow my body to heal. So, if I miss a day and then show up with no visible sign of illness, please trust that I didn’t skip for fun. I rarely do.

I like school. I enjoy activity. I’d rather be out than home in bed — especially when there’s so much make-up work to do.

I know I need bring viable excuses, and may not be eligible for end of the year awards due to less than stellar attendance — even if my grades are good. But I’m a fighter. I won’t be home longer than necessary.

Deep down, I just want to live, touch the sky, and maybe even dance under the moon once or twice.

Getty Image by monkeybusinessimages

Originally published: February 28, 2018
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