Terse verse

    © A. E. P. (Ed) Wall, 17333 Deer Point Drive, Orland Park, IL 60467-7821           aepwall@gmail.com

Two heads abetter of one

I’m living a double life. I was talking with my daughter when I noticed how intently I was trying to pay attention. My duplex head was giving half of its focus to our conversation, while the other half was dealing with MSA, the multiple system atrophy that short circuits my attempts to stand more than briefly, or to walk more than a few yards with my rollator.

While one half of my apparatus is happily punching the computer keys or reading a timely mystery novel, another half is occupied by MSA spinoffs, literally a pain in the neck, some hammering on the inside of my skull (who’s trying to get out?), a punch in the shoulder or the sudden weakening of an arm, like a pricked balloon.

It is as though every 24-hour day comes in a 12-hour capsule. Time is always short. Actions often leave no trace.

Why am I telling you this? Partly because I was born this way, a journalist whose story-telling affliction is as old as the hieroglyphics. Partly because the more people know about MSA, a rare and incurable disease, the more likely is support for research. And partly as my excuse for being slow. My chow hound fame was wiped out, like gravy with a napkin, and I’m now the slowest eater at any table. I’m slow to answer letters and sometimes MSA wipes out my memory of a letter that needs answering or a promise made. This is a disease of falling and then getting up again.

Thanks for being one of the reasons to get back up.

     --Notes in an OPCA/MSA Diary

Losing Robin Williams

Worldwide affection for Robin Williams, his professional success and personal wealth seemed like dreams fulfilled. His apparent suicide before he was old enough for regular Social Security checks was linked to his long-time struggles with depression, along with his misuse of alcohol and other seductive drugs.

The world has changed inside and out during my lifetime, which began when Calvin Coolidge was in the White House. When I was in kindergarten my dad was installing sound systems for movie theaters making the switch from silent films. Crippling diseases have been cured, travel has been reinvented with jet planes and interstate highways, television,  computers  and the Internet are here—but there’s  no cure so far for the deadly afflictions of Robin Williams.

Troublesome in a special way is the visibility of those afflictions, painfully evident, and the lottery effect of treatment for them. Many who apply AA principles in struggles with alcohol and narcotics are winners. Many are not. Nobody has figured out why one person gets a winning ticket and another crashes. Prayer is one response to tragic conditions, and the understanding of prayer may increase right along with the understanding of atoms,  cells and heartbeats. The evolution of spirituality may not be as slow as it seems. I was already in my crib in Jamestown, N.Y., when John Scopes was convicted of teaching evolution in Tennessee.

Life has evolved since then, conspicuously in the material realm of camera phones and air conditioners, less plainly in the spiritual realm of loving, giving and forgiving. People still kill each other, still let people go to sleep without food, suffer illness without care. Changes are coming. Watch for the time when defects and ailments will be identified at birth, and the sneaky diseases will no longer wait for decades before showing themselves as limps, dimmed eyes, cancers, neurological short circuits or painful disfigurements. They will be healed at birth.  And that will be one answer to prayer.

My own OPCA/MSA has been with me for such a long time that we understand each other, even though we are not friends. It has been a dozen years since I was diagnosed, but the disease was present long before that. When I was 63, as Robin Williams was when he died, I was already using a walking stick. But 12-step programs had no influence on the disease I did not know I had.

Politicians and moms and buyers of aspirin tablets think sometimes that all of the world’s problems would end if each person were given a new house, car and bank account. The unhappy premature departure of everybody’s friend, Robin, reminds us that a person’s security is fundamentally spiritual and less fundamentally material. Men and women of wealth and fame are not immune to suicide or crime.

Thanks to my kids and grandkids, and to friends, I enjoy the sweet life and get to remember most of it. Getting old is one thing, embracing personal evolution makes it more interesting. So far, so good.