12599350_901549156608118_1475478312_n.jpg

The next few days: life on the road. I used to love travel and flying – I always envied my father, who spent his life jetting around, practically living at FL390. Recently, my worsening has been making travel difficult – not only do I have trouble transporting my medication and thus often need to miss doses, I also seem to be truly adversely affected by flying. Last time, a two-day blitz trip just across the channel had me laid up for the best part of a week. Despite the kindness and assistance of airline staff, boarding is a pain in the rear, and so is a cramped flight that only worsens spasticity and pain. I was named after Christopher Columbus, destined by my parents (themselves globetrotters) to explore a world that is now becoming less and less accessible. I don’t know if I’ll ever get to walk around Mt Kailash. I don’t know if, in my current state, I could hike to the small glacier lakes in the Oetz Valley. I don’t know if physio, a new disease-modifying drug or better symptomatic treatment could help with this. And while I don’t let myself surrender to doubts often (doubts create their own fulfillment!), it’s at days like this when a simple domestic trip becomes a painful and risky chore that I desperately look for a droplet of hope in a near empty jar. This isn’t a pity party – I have a fantastic, amazing life that I love above all else (and you’ve gotta imagine what that life is like of it makes up for all this!!!), it’s an acknowledgement of the things lost and being lost in the fires of coping with an illness. It’s the acknowledgement that there are the days of the stereotypical heroic fighting (frankly, one of my biggest accomplishments as of late was putting up a light in my room!), and then there are the seasons of loss. Amidst all, the sole constants that remain are my awesome wife, our little (extended) family and God’s mercy and grace. And some days, all I can do is hold on like crazy.

Leave a Reply