Meet MS Support Hero Brian Hile
It was the longest one mile walk I have ever endured. I stopped at a bench halfway back to the once to just sit and cry. Brian did the best he could to console me. I honestly don’t remember if we spoke any words because I was in shock. We were both in shock.
I never would have made it back to my once without Brian’s help. Fortunately, no one saw us sneak in because my coworkers were still on lunch break. We gathered my backpack and tried to slip out the building through the back stairwell. Just then, the Chairman of the department came around the corner and caught us. He was alarmed by the look on our faces. I told him I was just diagnosed with Multiple Sclerosis. He said to go home and to not worry about anything. He would talk to my direct supervisor.
When Brian and I got home, we crawled into bed and cried some more. One odd thing about me is that even if I am grieving, I still get hungry! We decided to wash our faces and go for burrito bowls at Chipotle. I took a few small bites, but was instantly full. We packed up our food and went back home. We actually both slept that night because we were so emotionally exhausted and it was imperative to rest.
The next day, we got dressed and went to work. I never took time off after diagnosis. I had a very busy desk and the workload took my mind off of MS. It wasn’t until I was home after work, safe in Brian’s arms, that I would grieve and cry.
This went on for a couple of weeks. I worried that I was causing Brian too much stress. We were married 16 months (more than 11 years together) and I told him that the one- year warranty was expired and he had to keep me. No returns, no refunds! Humor helped us smile once in a while.
Another thing that helped my spirits was exercise. The stress of diagnosis and being worried about my future caused depression and I was prescribed anti-depressants. But Brian encouraged me to keep on running. I found that just 30 minutes of exercise each day made me feel better. If it weren’t for Brian’s support, I would have lapsed into deeper depression and not given running a second thought. I would have been okay to come home after work, eat chocolate chip cookies for dinner, pop 20mg of Paxil, and go to bed at 7:00pm.
I decided to start running as many marathons as possible because I was scared MS would take away my running ability. Brian was fully supportive. He saw how running made me happy, but he also recognized my urgency to accomplish a lot of things at once. Though my desperation was probably not healthy, Brian was understanding. He also knew I was a strong runner and could handle the miles.
What we did not know was how MS would progress in those first few months. I was diagnosed on October 24, 2006. I went on immunomodulating therapy by November to try to slow down the disease course. I had an exacerbation in January 2007 and started tripping and falling while running. We did not know I had an MS fare. We thought I was running too much and had an overuse injury. Brian accompanied me to countless sports doctor, podiatrist, physical therapy and acupuncture appointments, but no one recognized my “sports injury” was really MS-related. I tried to run the best I could, but had to sit out a couple of marathons and some local 5Ks because I was afraid of falling.
It wasn’t until NYC Marathon in November 2007 when I realized my problem was far more serious than an overuse issue. I almost fell more than a dozen times. I had to run the entire race with my head hanging down, staring at the ground ready to catch myself should I fall. At the finish line, I cried and told Brian I am done with marathons. I was totally dejected.
When I got back home, we went to my neurologist and she said I have a common symptom of MS called foot drop. I asked what can be done to fix the problem and she said that I have to “lower my expectations.” I held back my tears because I was pissed and did not want to cry in front of her. I could sense Brian was also livid.
I went back to my podiatrist and he sent me to an orthotist to be fitted with an ankle-foot orthosis (AFO) to prevent tripping and falling. Long story short, I received my first AFO in February 2008. I fast tracked a 6-week marathon training plan and ran all the long miles on a treadmill because I was learning to run with an AFO and still afraid of falling. Brian, being ever so supportive, ran on the treadmill next to me. I ran Boston Marathon in April. I cried when I saw Brian at the finish line, but this time they were happy tears because I was back in the running game!
I was getting used to my AFO and I had confidence back. I had four exacerbations, however, from February 2009 to March 2010. My right leg got weaker and heavier with each relapse. I went through multiple courses of IV Solumedrol (corticosteroids). My neurologist finally saw my unrelenting determination to remain a runner and offered IV Immunoglobulin when recovery was not satisfactory after steroids. When I relapsed again, I underwent six weeks of plasmapheresis to remove rogue antibodies. It is not a proven MS therapy, but we had hope. All the while, Brian came with me to my appointments even when he was getting pressure from his once for missing so many days. And he never got mad when a pair of new shoes landed on our front doorstep because steroids kept me up all night and I had nothing better to do than buy shoes online (Can you say, “Imelda Marcos”)!
I felt like MS was getting worse despite the treatments. My neurologist was getting tired of me. Brian and I could sense it in our meetings. Brian suggested we move to a more progressive town where the doctors have a better understanding of the disease. In June 2010, we left for Seattle, Washington. Brian made the sacrifice to leave a job he really liked at UCSD Athletics and we moved 1,300 miles away just for a chance that I might have better disease management. Luckily we made the right choice. I found amazing MS care at Virginia Mason Hospital and went on aggressive immunosuppressing MS therapy that my neurologist in San Diego was too scared to use. It worked well and I felt like my MS was finally under control.
We moved back to San Diego in June 2013 for our jobs and life seemed to settle. Then I came up with the hairbrained scheme to become the Yrst person with MS to run seven marathons on seven continents. Although my MS care in Seattle was awesome, my right leg never recovered and I have disability. My leg drags when I run and I consequently drift to my right. Brian retired from racing marathons and now runs on my right side as my guide. When I told Brian I wanted to run on all continents, he knew he would have to make the journey, too. When I proposed the idea, he simply said, “Okay!” Even when I asked if we could run them all in one year, he said, “Okay.” His voice may have been a little more cautious on the second “okay,” but he still agreed! Moreover, in the middle of the marathon adventure, when I asked to add an 8th marathon because National Geographic announced New Zealand and Australia are technically two separate continents, he insisted that we must run another marathon to cover all eight continents!
The adventure changed us forever. We made friends from all over the world and it was because of those connections that we started the Run A Myelin My Shoes team. But all of this never would have happened if I did not have my amazing MS Support Hero. Brian has enriched my life beyond my imagination and continues to push me forward. He jokes, “I’m just the driver.” But, he is the reason I am living my best life possible despite MS. From that initial one mile walk to the many more 26.2 mile runs we will do together, I am so lucky I have an amazing Hero to join me in this journey called life.