Truth be told I’m slightly in shock that I’m writing about this issue at all, let alone from the perspective of a person with a disability. Even though I’ve struggled with diseases for the better part of my 45 years on goddess’s green earth, I’ve never once identified as anything other than a person without a disability. I find this level of miniature shock healthy though. Let me tell you why.
When I was first diagnosed with Multiple Sclerosis, more commonly referred to as MS, I was extremely intentional in keeping the disease separate from myself. Although I didn’t realize it at the time, my primal response in the following 3 areas became pillars in my journey to whole-hearted self acceptance.
Immediately after I was diagnosed I made a conscious and noticeable choice in my language when talking about the illness. I would say “the MS” instead of “my MS”. Semantics may not seem like a big whoop to you, however I’m here to testify to how much it matters. Try this on for size. Go ahead and say the following out loud: “When I had a headache the other day it really hurt.” Now give this statement a whirl: “When I had my headache the other day it really hurt.” Which sentence made you feel more connected to the pain of the experience? I’m betting a pretty penny on the latter. When we own a statement by using possessive language such as “my” it creates an alliance. By consciously choosing to separate myself from the illness I refused to create an alliance with MS. This resulted in the preservation of my SELF.
Say for instance you have a daughter who is great at gymnastics. If you were sitting in the bleachers with some of the other parents watching your kiddos practice and you said, “The daughter is the one on the balance beam,” you’d get a handful of individuals raising an eyebrow at you. However if you offered, “My daughter is the one on the balance beam,” you’d be well received. Folks would understand your daughter was yours. You have effectively communicated an alliance. Do I want to form an alliance with my daughter? Absolutely. MS? Not so much. Since getting diagnosed is something I never wanted, I decided never to take ownership of MS. The disease would remain “the disease”, a separate entity to my SELF. It would never become “my disease”. In doing so I’ve allowed my SELF to remain in tact. I am a person first and foremost. Having MS is merely a part of my human experience.
Having MS feels like the musician, Sting, is constantly whispering his stalker-y hit from the 80s, “I’ll Be Watching You” unsolicited in my ear. However I’m determined to sing to my own tune. I will admit it can get noisy at times attempting to listen to myself sing with Sting cramping my style. So I’ve learned how to harmonize. While MS and I may be sharing the same song, we don’t have to sing the same melody. In fact the more I write my own tune the more I find MS taking the position as a backup singer. My tune of choice has been humor. I cannot emphasize the cliche “laughter is medicine” enough to y’all. Seriously, without humor I’d be toast. Or whatever the gluten free option of that expression would be. When I first got diagnosed I would make my friends laugh by saying, “MS sure MSed (messed) with the wrong woman!” Nowadays, if I must opt out of an activity due to MS, which happens often, I make light of a highly symptomatic day by saying, “You’ll have to excuse me. I’m having a particularly MS-y (messy) day.” Humor assists me in remaining empowered in an otherwise disempowering dynamic. I appreciate every smile birthed into laughter I’ve ever created.
It’s been important for me to clearly decipher the line between acceptance and ownership of this disease. I would be amiss to paint a picture of me and MS skipping happily into the sunset of acceptance. It took years of deep contemplation about life and death, particularly my place in it. When I was initially diagnosed I had way too many nights where I lay awake tortured by the thought of living, yet equally ravished by the thought of dying. Everything inside of me was shattering. The inner struggle was reflected by the outward crumbling of the life I had taken years to build. I lost all of it. My marriage, my home, my livelihood, my community. It took a whole lot of tears, years worth of therapy, and session after session with spiritual healers to accept the diagnosis I was given without becoming the disease itself. I lost the cornerstones that previously defined me and my existence: my marriage, my role as an able-bodied mother, my livelihood. It would have been so easy to slip into the identity of MS to fill these gaping voids. I learned there is a fine line between acceptance and self preservation, as well as between acceptance and ownership. Accepting my life as it is now, where I own I have a disability without owning the disability itself, is a PhD level of comprehension. Some days I feel like I’m in pre-school, other days I’ve got my masters degree. Having been kissed by the fate of a life-altering diagnosis is much like being in a long term relationship. The opportunities are plentiful to master self acceptance, compassion, empathy and perseverance. I have learned to sing when I thought I was born to dance. With time I am learning to love my new voice. So long as I can request my 80's buddy, Sting, to sing a different song every now and again, I know I will continue to be the stronger for it.
If you’d like to be the recipient of this humorous offering, please read: