Walking My Way Home

walking with HHV-6
A promise is a promise.
0 Comments / Shares

My continued survival begins and ends with my determination to keep two promises.

Will it ever end, though?  When asked how long I would plan to hold a position for which I recently applied, I threw caution to the wind and answered, “Until the last nail seals the coffin lid.”  I’ll keep these two promises just as long.

For the record:  The promises propelled me clear into the twenty-first century, tore me from the state which I had called home for 57 of my 62 years, and catapulted me into the heart of the California Delta Loop on the banks of the San Joaquin.

I made the first promise to my mother in 1969, right before I graduated from the eighth grade. We had gone to the orientation night for the Catholic high school which I would attend as the fourth and last Corley girl to walk its halls. She saw my nervousness. I think she meant to soothe me, or maybe to instill confidence.

 “I want to give you a piece of advice that I hope you follow,” she began. I felt a stab of impatience, the kind which young teenagers nearly claim as mandates.

“What is it, Mom,” I replied, wrinkling my nose.

My mother smiled. “Just this,” she replied. “If you walk every day of your life, you’ll walk every day of your life.” 

I contemplated this little gem. “So?” I asked.

“So keep walking,” she insisted. “Promise me. Keep walking.”

I knew what she meant even then. She meant, “Don’t let them put you in a wheel chair.” 

I promised her.

I’ve kept that promise.

In those days, my “walking problem” bore a diagnosis of (wait for it) “hereditary spastic paraplegia”, or sometimes “. . . quadriplegia”. In a few years, that label would change to “infantile onset of neuro-transmission deficit of unknown origins”.

What did that mean?

It meant that I walked funny but they didn’t know why. And that I had walked funny since toddlerhood.

My mother dragged me from pillar to post seeing doctors, though how she afforded the evaluations, I cannot say. We had little money. Perhaps she traded on her status as a medical care provider at St. Louis County Hospital. I’m not sure. But she pursued explanations and treatment with a relentlessness that I am proud to have inherited, though I did not get her common sense, the lack of which I have established with astonishing regularity.

I continued to walk through college at St. Louis University, a failed move to Boston, and two years in graduate school. When my PhD program lost its funding, I walked my spastic feet to the Missouri Department of Vocational Rehabilitation and got a grant to go to law school. Since then, I’ve kept walking through three marriages, four miscarriages, three states, and a dubious career as an attorney. I walked myself right into being what I called, “one of the oldest unwed mothers in America”, slogging through 34 weeks of pregnancy simultaneous to the Murphy Brown baby story line. (I’m eager to see if her son makes an appearance in the come-back series this fall.)

I collapsed at work in 1987 when I was a warrant officer in the Jackson County Prosecutor’s office. A bunch of tests and a jab or two at my pride later, a neurologist told me that she thought my problems were all in my head. She prescribed psychotropic drugs.

I had a melt-down in the chair of an unsuspecting stylist a week after filling the prescription.

“What did you take,” she urgently inquired. I pulled the bottle out of my purse. She called 911.

My Ob-Gyn came to see me at the hospital during that period. The other doctors strove to get all the prescription garbage out of my system, since I clearly had not handled it well. She asked me why I was on it in the first place. I told her about the “all in my head” comment. She shook her own head and sat at the end of my bed.

“Corinne,” she began. “I agree that you’re crazy, but I don’t think that’s why you walk funny.”

She wrote an order for a consultation with an infectious disease doctor, Joe Brewer. He agreed with her assessment on both counts. He did some tests and told me that I had likely had a viral encephalitis in as a child, and the virus had damaged my central nervous system. He couldn’t fix it; he couldn’t cure it; but somehow, knowing the reason for my “walking problem” helped me.

I decamped to Arkansas for five years right after his diagnosis. When I returned, my son had himself just started walking. I took a job as a campaign manager and later started my own law firm. My life seemed destined to succeed.

And I kept walking.

I walked through chicken pox, which I had never had and suffered at the same time as my son.

I walked through reoccurring shingles, the first episode of which raged during my son’s early days as a kindergartner.

I walked through a mysterious chronic sore throat, a TIA (mini-stroke), and a persistent cough that prompted my two-year old to tell me not to sing lullabies to him.

“You cough when you sing, Mommy,” he said. “Let me do it. Let me sing so you don’t cough.”

By the time my son turned six, I had begun to show signs of wear and tear. I did not know that the virus had reactivated and raged within me. I just knew that I felt awful.

Patrick could see that something was amiss. One day, as I walked him upstairs to school, he stopped. He settled his small hand further into mine and stared intently at me from two or three feet below my face.

“Mommy,” he began. “Are you going to die before I get big?”

Even now, the memory of his question evokes wracking sobs. But then, I had to suppress my immediate feeling of helplessness. I lowered my face to his, steadied myself on the stairwell wall, and said, in a firm voice, “No, Buddy, I’m going to live to be 103, and I’m going to NAG you every day of your life!”

He thought about that for a moment. He studied the step on which we stood, or maybe his little Teenage Mutant Ninja Turtle shoes. Finally, he lifted his face back towards mine and met my promise with his own.

“All right then,” he said. “I’m going to ANNOY you every day of YOUR life!  And don’t forget, Mommy – like you always say, ‘a promise is a promise’!”

I’ve kept both of my promises:  The 1969 one to my mother, and the 1997 one to my son.

I walked my way through Patrick’s elementary school years, nagging him with a cheerful dedication. I walked my way through his high school years and my second divorce. I walked my way to his Convocation at DePauw University, and, later, with my third husband, to his graduation.

In 2013, I found out about a doctor at Stanford Medical Center who had developed a medication to treat the reactivation of “my” virus. I had long since learned the exact nature of that virus, and I knew its name: HHV-6. One day, an e-mail from the HHV-6 Foundation brought its monthly newsletter and a story about Jorge Montoya, an ID doc in Palo Alto.  It seems that Dr. Montoya and his team had been looking for a medication to treat HIV, and discovered a drug which later proved effective for HHV-6 instead.

I began a mad campaign to walk myself 1800 miles to California and Dr. Montoya’s patient roster. As my third marriage crumbled, I lobbied my Kansas City doctors to write a lengthy referral, which landed me in the California sunshine just before Christmas in 2014.

I’ve been on Valcyte ever since. My virus has gone into a state of dormancy. I got divorced – again – and somewhere along the way, I got the wild idea to sell my house, build a tiny house on wheels, and walk myself out to the California Delta. I’m making a home here in a park that one of my neighbors called “the land of broken toys.” I like it here, and I take no issue with that description.

I’m still walking. I walk the quarter mile loop on which I live whenever I feel strong enough. I have a walking stick with a carved wizard face that my son bought me at the Kansas City Renaissance Festival many years ago. I don’t use it unless there’s a cliff to climb, or a wide expanse of rocky coastline in front of me. I just walk. Every day of my life.

As for whether I keep my promise to my son, I can say only this:  I’m 62. I’ve made it this far. I have no intention of failing him – or my mother - now.

After all:  A promise is a promise.

Comment on this story using Facebook.