Marking My 10-Year Anniversary with MS

I was driving on Andrews Air Force Base in Maryland around noon on a sunny and cold winter day when I got the call. It was January 30, 2005, and I was an active duty Special Agent assigned to the Air Force Office of Special Investigation’s headquarters. I heard my cell phone ringing, so I pulled over to answer it.

“Hello?”

My medical retirement in 2005

“Hi Sylvia, this is Dr. X from Neurology at Malcolm Grow Medical Center,” said the voice on the other end. I had been expecting this call.

“What can I do for you, Doc?” I asked, trying to sound cheerful.

“Well, we got your brain MRI results back, and it’s showing you have a small lesion on your corpus callosum,” Dr. X said.

“Okayyyy…” I replied, thinking that couldn’t be good.

“Between your spinal MRIs and lumbar puncture results, this is all pointing towards MS. But we need to have another symptomatic occurrence to say anything conclusive, like optic neuritis or something,” he explained.

Hiking in Guadelupe Mtns in 2005

“You know I had optic neuritis in August 2003; it was my first symptom,” I reminded him.

Dr. X paused. “Wait, let me look in your records…oh yeah, there it is. I have no idea how I missed that. Well, in that case, we can make a clinically definite diagnosis of MS.”

Just like that.

We didn’t talk much longer after that. He wanted me to make an appointment with him pretty soon so we could start talking about different treatment options and what the diagnosis would mean for my military career. After I hung up, I felt…okay. That must sound odd, considering I had just officially been diagnosed with an incurable disease. But MS generally isn’t the kind of condition that hits you over the head from one day to the next. I saw this day coming more than two years earlier, and the diagnosis was almost a relief. It meant I could get started on treatment and move out of this limbo to make some decisions about my future.

Ziplining in Park City, UT in 2007

Fast forward to today, January 30, 2015--a full decade after that fateful day. I have no idea what or how I feel. Should I be sad, or should I celebrate? My body and my abilities in no way resemble what they were like ten years ago, but I have much to be thankful for. I guess I should start my reflections by looking at each of these things.

As you may already be aware, MS is a progressive disease for which there is no cure--only a variety of treatments that slow down the progression with varying rates of success. At the time of my diagnosis, I was still able to walk, hike, ride a bicycle, and I suppose even run a little bit had I been so inclined. A few years later, I had to start using a cane on really hot days or on occasions where I would be walking longer distances. Then I moved to a walker in late 2011, a scooter in the summer of 2013, and most recently a power wheelchair for our home a couple of months ago. I can still walk short distances, but it sucks and I hate doing it. I'm exercising regularly with a special trainer to keep my legs as strong as possible since I'm using them much less at home with the power chair, but they get worse every year.

Exploring Sevilla, Spain in 2008

On the upside of the physical aspects of my MS, my upper body still works almost normally, with the exception of my hands that sometimes give me trouble writing. Mind you, I usually only have to write short notes or fill out paperwork at a doctor's office on rare occasions, so this has only been a minor inconvenience. My memory and cognitive skills are normal, so I can work and think and take care of all the administrative tasks related to managing a household. With the help of my scooter, I travel alone regularly across the country with much success, albeit with the occasional help of kind strangers and some logistical planning ahead of time.

Celebrating the 4th of July in 2009

As for the great things that have happened in my life during my ten years with MS...where do I begin? I gave birth to two amazing boys who are the light of my life, and I'm able to be a very active participant in their daily lives despite my physical limitations. I've had the chance to own and ride a motorcycle for a short while, go skiing one last time, travel to Spain, England, Italy, and Canada, help paint and renovate our first house, start my own company, and publish two books. I've been able to dance in my scooter at a Vegas nightclub with my two best friends, attend several awesome concerts and sporting events, go ziplining, help take our boys to Disneyland, and watch their soccer games.

Four-wheeling with the boys in 2013

Some of it has been easier than I ever expected and some of it has been extraordinarily difficult. I am SO blessed to live in a country with the Americans with Disabilities Act and a general public acceptance of disabled people who have to use mobility aids. I read all the time about fellow MSers or others with disabilities who live in countries that have not made moves to increase accessibility to places like government buildings or stores and restaurants whenever possible. Many people in other countries are more or less confined to their homes because they can't be as independent as they'd like, or just can't go to many places without having to be carried--a humiliating experience at best.

ASIS Security Seminar in 2014

My new walker, c. 2011

So I think I'll spend the day just reflecting on these things, and being incredibly grateful to my family, friends, and professional colleagues who have been so incredibly helpful, generous, and supportive of my and my "special needs" during the past ten years. I have no idea what the next ten years hold; maybe a cure, amazing mobility technological advances, or maybe even more hardship. I have no way of predicting what my life of that of my family will look like a decade down the road. I only know that I will maintain the same positive attitude and fighting spirit that has gotten me to this amazing place in the present.