Aiming For A Bittersweet Life: The Liberation of Expecting To Become Disabled

Most health advice and guidance teach us what to do to avoid illness. I spent many years following all the advice and making my health a priority with diet and exercise. Once I was diagnosed with Multiple Sclerosis, my view of wellness expanded beyond just my physique, vitals and medical test results.  It now includes adventure, purpose, giving, gratitude, finances, outlook and relationships as well as physical fitness.

My outlook on my future has evolved to believing disability is inevitable for me if I don’t die young. There’s liberation in knowing disability awaits. While I continue to do things that improve my health, I’m embracing illness and aging. Assuming my body will decline someday has been freeing. I don’t live in fear. It’s like my leash has come off and I’m eager to do everything that requires physical mobility. I want to prioritize experiences and activities that depend on my body’s abilities and do them sooner than later.

I think of it as aiming for a bittersweet life to be positive. Living a positive life includes experiencing grief and anger and frustration. It's finding the beauty in all of those experiences that makes for a positive life. Sometimes when I'm feeling low the best thing to do is to watch a sad movie or listen to a song that breaks my heart because then I know I’m living all of life and not just the pleasant parts.

It’s not a negative perspective. It’s embracing the future as it could be given MS has no cure and the medications available today merely slow disease progression. Thinking positively doesn’t mean only hoping for the best outcome. It means assuming things will fall apart periodically and it’ll be okay. I’ll adapt. I’ll continue to find purpose and experience joy. All lives will end. A bittersweet life satisfies the wonderful and the heart wrenching, and I want to experience it all.

Part of embracing a future with an eroding body and disability is cultivating the skill of living well with loss. Get really good at it. I try not to sidestep it or just get through it but to genuinely embrace loss. My goal is to have had such a satisfying life with fulfilling relationships that there will be grief, but there will also be a sense of satisfaction that I didn’t hold back or miss out.

Positivity is not being happy; it's finding grace in that ugly terrible.  When I feel fear, I analyze it to figure out what it is I'm afraid of. My perspective is not just looking at the bright side of things. It's accepting the hard, challenging, frustrating and miserable as having their own form of beauty. 

Somewhat similar to physical agility where people are able to move and fall so that they don’t injure themselves and can get back up, I aim for emotional agility where I’m able to feel heartbreak and fear without it injuring or paralyzing me. The skill I spend the most time cultivating is experiencing pain, fear and discomfort without lashing out.

Since the day I was diagnosed with MS in 2008, I’ve become liberated and made myself and my goals priorities. Cultivating the skills to live through and embrace loss, find beauty in everything, and aim for the bittersweet has given me a positive perspective that works for me.