Paul Paez: Be Impatient, Unreasonable, and Undeterred

Multiple sclerosis (MS) is a particularly frustrating illness because it affects the Central Nervous System (CNS); thus we are left with an autoimmune illness to which no one knows the exact cause, for which there is no cure, and which impacts a part of the body, the CNS, that no one truly understands.

I often quote my late father, Pedro N. Páez, a pulmonary specialist who represented the archetypal country doctor (which he was before he emigrated from Argentina). He once said about neurology, “It always lends a beautiful diagnosis, but never a cure.”

That’s not a comment about neurologists, but rather about the complexity of the CNS, and it also explains why every MS patient has a different story to tell about how the disease impacts their life.

This is my MS story.

In February of 2005, I was working on a home improvement project to replace our hardwood floor. Upon completion, my left foot felt numb, as if it had “fallen asleep.” I chalked it up to the strenuousness of the recent project, and as most men would do, I simply ignored the symptoms. Three weeks later, when my entire left leg, left arm, right foot and right leg were similarly affected, I said, “Hmm.  Maybe this is not a pinched nerve!”

I finally went to the doctor, who immediately sent me to the emergency room. They ran a series of tests, and confirmed that I, indeed, had multiple sclerosis.

Not knowing much about MS (okay, nothing about MS), I assumed it was a death sentence. I was immediately assured it was not, and after an initial dose of steroids and initiation of my Interferon treatment, I was feeling much better. In fact, I was jogging, playing tennis and even snow skiing within six months.

At the time, I said to myself, “Well I dodged that bullet. And they told me I might have to walk with a cane when I was in my 70s. Fools!”

Five years later, I’m walking with a cane.

At the time of my initial (and apparently, only) remission, I was feeling so good I took a new, exciting, if not rather stressful job that moved me and my family from Dallas to Los Angeles. My wife and I said it was a perfect way to launch our “new life.”

The day we all boarded the airplane for this new life, my left foot went numb again.

That was December 2006, and I have had constant exacerbations ever since. So many, that it is hard to know when one stops and the other begins. I hid it from my employer for a while, but eventually, my performance at work was showing, and I had to take sick leave in March of 2008. (Note to the reader: If you think you’re covered by long-term care insurance through work, think again.)

In terms of symptoms, by this time I had severe neuropathic pain in my legs and arms, I suffered continuous cluster headaches, I had bouts of blurred vision, and I was so weak I could not leave my bed for more than a few hours a day.

What’s worse, I did not have a doctor at the time that seemed to understand my situation. She thought my symptoms were normal and didn’t understand my concern. Perhaps they were normal, but not to me. I was under the impression that I was going to have exacerbations every few years, at best, and as such, I was still trying to hold down a job and my role as the single “bread-winner” in our family. It wasn’t working — nor was I.

So, I switched doctors, had a whole new series of tests, MRI’s and lumbar punctures (yes, that’s plural); and it was decided that, well… I had MS.

“Thanks for the news flash,” I said.

The rest of the conversation went something like this:

“You have what is known as Relapsing Progressive MS.”

“Progressive?” I asked. “I thought Progressive MS debilitates slowly without any discernable exacerbations.”

“Yes,” she said, “but you have the kind that debilitates quickly, with constant exacerbations.”

“There’s a kind like that?” I asked.

“Yes, it’s rare. It’s about the only kind of MS today that can still kill you because it moves so fast,” she said.

“Oh. Lucky me…I guess.”

Worse still, there was no clear treatment path for this type of MS, short of a round of chemotherapy to try and knock my immune system out of action for a while. There was only a 25% chance of success, but at that point, they were the best odds I had.

After 6 months of chemotherapy, which ended in June of this year, I am happy to say that I emerged feeling better than I had in years, not withstanding significant numbness and neuropathic pain from my thighs down to my toes. I’m told this is the damage to my myelin that probably cannot be fixed. But in terms of the progression, we have, at least for a while, stopped its rapid assault.

So, despite the fact that I am in constant pain, that I lost my job, and that the lack of adequate (or if I may say, ethical) insurance coverage has left me and my family near bankruptcy; I still consider myself one of the luckiest people in the world.

Six months in a chemotherapy lab will do that for you.

Many of the people I met in that lab are gone today. I remain, and so while I initially started telling my story because it gave me something to do; I continue telling it –and retelling it– because I feel it’s both my obligation and, in an odd way, my gift.

MS has taught me a lesson about life that, ironically, I don’t think I would have learned without it. And while that lesson doesn’t help me with a cure, it does help me, and I hope others, remain hopeful for a cure.

And one of those lessons is that life is tenuous, and if I am going to live a life fulfilled, I must be extremely impatient, perhaps even unreasonable, about any thing or any one who becomes an obstacle to that fulfillment.

That’s why I support the Myelin Repair Foundation, because it is dedicated to a cure, now and in our lifetime.

When Scott and the MRF came across obstacles to this goal, they didn’t stop, they just went around it, and that’s the attitude we all need — Impatience, Unreasonableness, and Undeterrence.

How have you demonstrated your impatience, unreasonableness and undeterrence in life? Post to comments.

Paul’s Quest for Better Health

Tags: chemotherapy, CNS, interferon, multiple sclerosis, Paul Paez, pedro n paez, Relapsing Progressive, Relapsing Progressive MS, steroids, Stories

This entry was posted on Tuesday, November 10th, 2009 at 12:09 pm and is filed under Creative Expression, Stories. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.