disability – KM Huber's Blog

Today, the Memorial Mass celebrating my mother’s life is being said.

I am over 2000 miles away. Ours has been a long-distance relationship for almost two decades.

The last time I saw my mother was four years ago. Increasingly, we shared physical disability. Soon, neither was able to travel.

Most Sundays, I wrote a weekly letter to her, just a page or two. She was no longer able to send email so for the last 2 ½ years of her life, I wrote her a letter.

She did not write back. The give-and-take of regular correspondence was not the purpose of the letters. Mom wanted to know about my life, the day-to-day of it, and so I told her.

Some weeks I wrote her about Zen Buddhism within the context of her own devout Catholicism. It pleased her that I practiced a kind of “faith,” even if that is not how I would have described my practice.

Once that distinction would have mattered but in writing the letters, the word faith fit. Mom had a deeply personal relationship with God, an unwavering faith and trust in His grace. She believed “Let go and let God.”

Mom respected people’s beliefs; they need not mirror her own. She knew how to listen and many turned to her. She showed me I do not have to agree with people but I do have to hear them.

It took me decades to appreciate that in my mother but when I did, it opened so many doors for me.

I think it always opened doors for her, too:

Let my last door open into the light of late spring.

May it be shadowed with the announcements of those who walked

into darkness before me—right foot disappearing first,

body leaning into the unknown, trailing hand making mostly

mysterious gestures: I’m all right or come along; it’s what I thought

or it’s not what I thought.” *

Mom died in winter–in Wyoming–her memorial service is in late spring. Just two days ago it snowed.

Spring still lags. I know she would appreciate that.

An avid gardener, Mom knew late spring better than most. She accepted its elusiveness and never doubted it.

I have no doubt its light opened her last door.

—*Wendy Bishop, “My Last Door” excerpt from My Last Door, Anhinga Press, Tallahassee, FL 2007.

For nearly four decades, I viewed disability through a lens of limitation. For me, that shutter had only two settings, open or closed, a.k.a. able or disabled.

Some years, I fully embraced the label of disability, assuming it as my identity. And then better health would return. Always, I believed the return permanent, and it never was.

My ego had this to say: “You are better and can do more so do it.” No matter the state of my health, I believed my ego. Sheer stubbornness prevailed more often than not. Yet, disease processes can only be suppressed for so long.

My ego was not without an opinion on poor health, either. “You can get better. You have before. So do it.” Sometimes, remission lasted for years but always, disability returned.

All the while I was struggling with the disability label, I kept accumulating medical diagnoses. I gave them little notice other than to put them in a neat stack for later consideration, which I never did.

Rather, I rode the roller coaster of disability as if it were the only experience of my life. Until one day, not too long ago, I got off. No more struggling to rise only to rush back down. No matter how long it took to climb up, the trip to the bottom never lasted long enough.

Undoubtedly, my ego had an opinion but I did not listen. Rather, I followed my instincts: why not float upon impermanence? Stay open to experience. Meet it with curiosity. Impermanence will take you on the ride of your life.

And then the bottom fell out, as I wrote in my last post almost three months ago. I’m still afloat, which is not easier than riding on a roller coaster just different. I sail with the current rather than setting a course for lands lost or for shores beyond my reach.

I discover myriad angles in the ever widening lens of impermanence, even if the dawning day is dark. Always, there is a sliver of light, and if I’m mindful, I will discover it.

Familiar disease labels are never far off but I do not seek them out or try to steer away. They will find me, and I will meet what they have to offer. Just recently I added a new label, rheumatoid arthritis. It offers yet another perspective on the Zen koan, “The obstacle is the path.”

I stay the course, scanning dark skies for the inevitable sliver of light.

Autoimmune disease— lupus, Sjogren’s, and rheumatoid arthritis— are quite active currently as is spinal cord disease (myelopathy). Working with degenerative disc disease, myelopathy has permanently affected my gait (ataxia) as well as the reflexes in my limbs (hyperreflexia).

Each label is its own lens of limitation. To attach to a label or to avoid it will not change the experience it brings. Labels float in and out of life. I aim to let them do just that.

The C2-C4 donor bone fusion is still “not taking” but “my films look good” my neurosurgeon tells me. The fusion hardware holding the donor bone in place can last as long as 10 years. Even autoimmune disease is doing its part as it provides more than enough inflammation to assist the fusion process. My neurosurgeon remains optimistic and so do I.

Sliver of light in a sea of labels.

All of my medical practitioners support my daily, gentle yoga practice, no matter the disease experience of the moment. Not every day am I able to perform each yoga pose completely but every day I practice yoga.

In yoga and meditation, there is only the lens of impermanence, a mindset of acceptance that no thing ever stays or is ever the same, no matter how many times met. I agree to medications that I once rejected: a weekly dose of methotrexate and a small, daily dose of prednisone. The methotrexate requires monthly blood test monitoring.

Inflammation may be assisting the donor bone fusion but it is damaging my joints and tissues. Accepting the medication is as essential to maintaining my independence as are yoga and meditation. In an open-ended mindset, labels pass freely.

In every moment there is movement, a breathing in only to let go.

As in meditation, the breath in yoga is critical to sensing the body’s signals. With my breath I soften the pain of movement, all the while experiencing its energy. Every day is a new communication with the body, no matter how many yoga poses I complete or how long I meditate.

Even on those days when there is only a sliver of light, the impermanence of each experience is worth the ride. After all, I am looking through an ever widening lens with myriad angles.