Three years after diagnosis, beating Sarcoidosis is more difficult than I originally imagined. But I’m still on the bike.

The air felt odd, because it was odd. It was February 5th and it was warm. At 7 p.m. temperatures were still in the ’60’s.

That doesn’t happen often in February and it hadn’t happened in southwest Virginia for weeks and weeks.

Yet there I was on the Roanoke River Greenway. Riding my bike.

I sported headlights, flashing red lights, and all the reflective wear I owned – just so I didn’t get run over on the short stretch of road between the YMCA and trail head. The precautions felt a bit over the top, but people in cars wouldn’t be expecting cyclists on this night.

Not at this time of year.

Once on the paved Greenway, there weren’t many other people. A few runners trotted by with headlamps. I passed perhaps, two other cyclists.

Otherwise it was just me, the dark and my thoughts.

While my eyes focused on the blurry place where the headlight merged with darkness, a deep sense of appreciation for this mid-winter opportunity invaded my psyche.

The appreciation comes from beyond a break in the weather. It rises from my fight with a disease called sarcoidosis.

In my case it’s neuro-sarcoidosis, meaning I have it in my nervous system.

On my spinal cord.

Sarcoidosis doesn’t prevent riding. It just makes it harder.

I’ve written about this struggle before. What surprises me is that I’m still writing about it.

That I’m still dealing with it.

And, actually, it’s worse. Three months ago, (December 2018) The disease flared up, leaving extended portions of my spinal cord inflamed. Instead of just the spot in the back of my neck, the inflammation went down to the middle of my back.

No picnic.

In my body that inflammation shows up as more and more numbness. Now it’s in my arms and hands. My already numb legs and feet are a bit worse than before. You can throw in a bit of lost balance just for good measure.

It will most likely stay that way.

I’m taking massive doses of prednisone, which makes me hard to deal with. It also weakens muscles and makes your face fat. (See moon face) There’s also unavoidable belly fat.

Thankfully, you can still ride with a fat face.

I could get into doctors and medicines and dosages and some botched protocols — but that’s not the point.

On this ride I’m feeling grateful.

Grateful to be on the bike. Grateful to still be riding.

And that’s the thing. Why is the bike so important? What is it about pedaling that makes it fee more important or interesting or engaging than anything else I might be doing?

I can say for sure that if I was simply walking the Greenway that night, there would not have been that sense of happiness.

Being outdoors, all by itself isn’t enough. It doesn’t pull the trigger. So what is it about cycling?

I wish I could say that on this solo sojourn – in the darkness, with the river rolling gently beside the trail, otherwise free of human distractions, and my mind wandering to new frontiers, that I found the answer. That an epiphany came upon me.

But it didn’t.

I’ve tried to back it out, to look back at my origins on the bike — be it the Western Flyer banana bike I had as a kid, or early ten speeds or mountain bikes. But there is nothing that screams “John is a cyclist.”

I’ve never been better than an average rider.

Even when I thought I was, or maybe could be.

I enjoy the fitness. I like the idea of getting somewhere under my own power. The wind in my face is great. Ogling new bikes and components is practically a past time. But most of those itches probably could be scratched elsewhere.

So, what’s the damn attraction to the bike?

I don’t know.

But every time sarcoidosis reminds me that it wants to encroach on my body’s ability to do whatever, one of the first concerns is whether I can still ride.

I’m about to start on a new medicine that may help doctors better control this disease. It will be months – and the possibility of some uncomfortable side effects – before we know if we’ve gained the upper hand on sarcoidosis.

It may be that the new therapy doesn’t work at all.

Unlike overuse injuries and twisted ankles or torn ligaments I’ve suffered over the years, there is no way to throw myself at getting better. It’s not like eating right, getting plenty of exercise and icing the sore spot is going to help. It’s a chronic condition and it’s not going away.

That’s tough to accept.

In the meantime, I’m riding as much as I can.

Even if I don’t know why.

Follow me on Strava.

Click here to learn more about sarcoidosis, a rare disease of unknown origin, that usually attacks the lungs, but can appear in just about any part of the body, including the heart, and other organs.

A few weeks after surgery I was riding my mountain bike in the snow, you know, just to be sure I could still ride!

I’ve been some pretty cool places on my bike. Check out places like Montana, Vermont, New York State and of course — Virginia!