head broken up into three pieces, one has a hockey skate and another has a plane

To The (Things) We Have Lost

When it comes to living with ankylosing spondylitis, I try to not think negatively. I want to focus on all I have gained and not what I have lost. And I try to laugh. If I don’t laugh at my illness, it would just be sad.

However, I have lost things, as we all have. Chronic illnesses of all kinds make the things we love doing more difficult or completely out of the question.

This is an ode to all I have lost.

My lost physicality

You might not believe it, but I used to be an athlete. If you can believe it...Thank you!

But, all fishing for compliments aside, I used to play a lot of sports, even after my diagnosis.

I started playing ice hockey at age 5 and played for 8 years. The only reason why I quit was that I wasn't any good and nobody wanted me on their team. If it wasn't for that, I probably never would have stopped. Ice skating was still my favorite form of exercise years after that.

I also played football, golf, and I boxed.

I never had a problem putting my body on the line for the team. No, I wasn't big, but I’d still go full-on into a play to help my team. Did this hurt me in the future? Probably. But, at the time, I didn’t care.

When I was 13, I broke my wrist in a hockey game. I stayed on the ice for the rest of the game playing one-handed, but that was the last time I played.

I was a runner

While I was recovering, I took up distance running. With my long legs and stamina, it was the perfect fit for me. I was never satisfied with my runs, and always wanted to go further than before. My goal was to run a marathon. Boston most likely. I had plans.

My body was the only thing that made me stop. And, truth be told, because my AS limited my stride, I ran very stiff and hit the pavement harder than I should. My coaches always yelled at me to soften my stride, but seriously, I couldn't. This unfortunately lead to stress fractures in my ankles. The event that, as I've written before, allowed my AS to finally catch up.

My body told me I needed to quit, but my mind didn’t want to accept that. I never ran a marathon.

I know, not everyone gets to run a marathon. It is a ridiculous race. Like seriously, the first marathon runner died. I don't know why we thought 26.2 miles was a good distance, but that’s what it is. I know I will never run a marathon, but it hurts and I still lightly morn every year when the Boston Marathon comes around.

While, as time goes by, I don’t miss sports as much. I do miss being able to go for a run, or play a round of golf whenever I want. The lost freedom of choice is what hurts the most.

My lost jet setting ways

I crossed the Pacific Ocean six times in 18 months. I lived in foreign countries. And, I swam with sea lions. When people hear about my years spent in Vietnam and The Galápagos Islands they are always like, “Jed, you lived the most fascinating life!” Fascinating few years, I’ll give you, but the point is, I was able to do this relatively pain-free.

When I lived in Vietnam, I walked everywhere. Once 10 miles because I was too stubborn to pay for a taxi in the tourist district (they always run up the fares). I would hop onto the back of a motorbike without thinking, and ride to the next outlier district.

When I lived in the Galapagos, I would hike and swim every single day. I gave little kids rides on my shoulders, slept on a hard bed, and took freezing cold saltwater showers.

Doing all this, I never hurt! I might end up exhausted and had to take advantage of the mandated midday nap both countries observed, but I never hurt and I lived to do it all again the next day.



I’ll admit, this was all 14 years ago, and age isn't helping either, but I can’t even imagine hanging onto a motorbike for 2 hours, or hiking in the mountains, or giving little kids piggyback rides in the ocean.

Jed giving a piggy back ride to a littl girl

These are things I couldn't do now, even if I wanted to.

We are so far away from mind over matter. Doing some of these things could do serious damage.

Saying goodbye to those things we have lost

The truth is, even though it can really hurt, we sometimes just need to say “adios” to what we used to enjoy.

Some people still run marathons at 90 and can pull a truck at 70. These people are amazing. And while we are amazing in our own ways, we are not them. Sorry to say.

It’s not fair in the slightest that we have to give up our past loves. And sometimes we might have a spark of strength and energy that allows us to go above and beyond what we have come to expect for ourselves. And maybe when we go above and beyond, we don’t pay the dearest price for it.

More power to the Spondy who can!

But, what I'm saying is, there is no shame in letting go.

Let the past be the past, and focus on the future.

There is still plenty we can do.

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