The good, the bad, the frustratingly mundane (10.21.16)

I wrote some more about what life is like to be young and sick. And it’s onThe Mighty. Thanks for reading.

“I do not have to apologize.”


I couldn’t dress myself today.

Ugh. Sorry, I just reread that sentence and shuddered. I could not dress myself today.

Well that’s not completely accurate, I got halfway dressed and had to go lie down, unable to complete the task until I had enough rest to summon the strength to finish the job.

As I lay on my bed, (now fully clothed) I cannot help think about where I am. The good, the bad, the frustratingly mundane. And that is where my mind gets stuck. This time it’s not the brain fog that I often experience as part of my illness, the one that prevents quick thinking and often leaves me searching for the right word. This time my pause is situational. Now it is the simple tasks that occupy my mind.

When your health fails, your priorities change whether you’re ready or not.

It’s been a difficult lesson to learn. And even harder to adjust my vision of what my life will look like in the future.

The reality of my chronic illness means I am only a fraction as involved in the normal daily routines of life as I used to be. And now my social life is basically non-existent. The desire is still there, but the stamina and ability to plan events days out in the future has ebbed away.

An example: a few weeks ago my cousin came to visit me for a few days. I love our visits because she is sweet and funny and kind and she shares my love of shark movies and bad horror flicks. For the last few years my ability to interact has steadily decreased. Where once I was able to host my young cousin and take her around to many of the fun Hollywood tourist spots, now she visits me at my childhood home and helps take care of me.

I look at all the things she has packed into her life at 19 and her ease at juggling multiple things at once. Her exuberance for life reminds me of an easier time, one where I didn’t have to schedule recovery days or curl up in my dark room on my soft bed and wrap myself in blankets, willing my pain to go away. I try not dwell on the days that were free of specialists, blood draws and the treatment that promises to heal me, all previous tries be damned!

Admittedly, I do miss the days when I could exercise in the morning, work a full day and then grab drinks with friends or go rehearse with my improv troupe. But that is no longer my reality.

So I focus on what I am able to do on good days. Reading, playing outside with my adorable puppy, and constructing various crafts for my friends and spoonie sisters. And when I am lucky enough to have my sweet cousin next to me, we continue our tradition of watching many, many bad shark movies, giggling, cracking jokes and shrieking in mock terror. (Seriously ladies, do not once the shark has appeared, donot go back in the water — it never ends well).

Toward the end of her visit I had to excuse myself to go lay down in my room, most likely to curl up in a ball and will myself to sleep.

“I’m sorry,” I began, but she silenced me by gently placing her hands on my shoulders. “You don’t ever have to apologize for not feeling well. It’s not your fault and I love just hanging out with you even if we just veg out.”

And she’s right. I do not have to apologize.

No, my illness does not define me, and often it tamps down my ability to do the things I love. I may never live life the way I once did, but that’s OK. I still hold out hope for improvement, in whatever new reality comes my way. And you can bet I’ll avoid those shark infested waters.