I was driving a Honda down the highway for a three-hour trip on June 21, 1998 and my right foot felt oddly asleep and would not wake up, which I found strange and annoying. I kept wiggling my toes a little and wondered what was wrong but the road kept me equally occupied.  Annoying progressed to a burning, searing pain that climbed steadily up my entire right side up to my jawline, perfectly delineated smack-dab down the middle of my body by the end of the work week.  This pain which has been with me for the past 25 years resembles being acid-washed and not rinsed off.  Any pressure on my right side or the cold nose of my new puppy Oliver were intolerable.  Colder than room temperature was garbled into a signal for a new flavor of pain that caused me to yelp.  Within two weeks of the terror that was creeping up my right side, I called my workplace medical center and asked for a referral to a neurologist, having never broken a bone, had a stitch or had more than one case of the flu during my 28 years on earth.  After my first brain MRI, and several other diagnostics, I was told, “At least we know you don’t have multiple sclerosis.” Why did he even say that? I thought I had a pinched nerve from moving the dining room table on June 20.  Multiple What?

This is where I mention that I am a fighter. I don’t mean this lightly. I was born this way and my circumstances as a young person galvanized this skill.  In addition to fighter, I was told that if I were dropped out of a helicopter anywhere in the world, I would survive.  For my college application essays, I wrote about being ‘adaptable’ and how and why I was just that.  These are qualities that have helped me navigate the arduous MS journey I am about to share, but I embody other traits that have not been so helpful, rest assured.  Life is a learning process.

My situation was bad and I knew it.  I drove myself to the neurologist’s office and demanded that they see me and told them I would sit in the waiting room until they did.  Fighter that I am – I did this twice.  I got 2 more MRI’s ordered on my lower back and mid back.  Nothing showed.  Out of ideas, I was referred to their pain doc for help with my increasing pain.  He looked through the chart and said, ‘We better get a neck MRI also’, so I got one at 9pm one night after playing tennis with my friend Frank.  I felt horrible, but I kept up pretenses.

It was the first time I had seen this particular crestfallen and pained look on a physician’s face and humbled body language as he walked through the exam room door.  That look is always jarring because you know something ominous is coming; but, the first time was the worst.  When the pain doctor stood over me and read the 4th and final MRI report to me that showed I had multiple large MS lesions on my cervical spine (neck) – I actually floated above my body and watched us both from above.  My imposter below asked why ‘Chuck’ said that I didn’t have MS.  Chuck wasn’t the first name of the neurologist who made that comment in June but I left my body and unbeknownst to me, was attending a funeral for the life I had expected to live.  It was as if there were 2 of us at the funeral but the doctor got to go home to his life and I would be living in the funeral for the rest of my days on planet earth.  Mourning my desired life has been a daily occurrence of my MS journey. 

I took the call from the San Francisco office at my software company at about 2:30pm and had to say that I had just been to the doctor and had just gotten a tragic diagnosis and would have to decline the incredible job offer. Bad Luck and ironic timing.  I sat down after that call and I thought very loudly in my head ‘This will be a filter for only good people in your life, Mary. This illness will require only kindness and compassion.  I have to admit that as much as I have tried to discern and protect myself from those who are insensitive and hurtful – I am still working on this.  I have improved and it has helped.  This disease is so incredibly sad, discouraging, physically and emotionally exhausting, physically and emotionally painful, and depleting in almost every single way hour by hour, month by month, year by year. I am lucky to have a small group who are kind, compassionate and reliable. Human kindness is the only thing that I have found to matter. 

I worked hard at my job in NC and tried to adjust to my new reality.  I didn’t share the diagnosis with anyone other than if absolutely mandatory. I never took off work unless absolutely necessary and 2 years later I got another job offer with my company in San Francisco.  There were a LOT of hills and a LOT of stairs all over the city so I hoped I could last one year.  In a nutshell: hikes, horseback riding, training and showing, dogs, loving friends, great food, great views and an amazing life over 15 years in San Francisco and Marin County was the result of staying determined to give it a try.  

I had to leave the workforce in late 2011, which was incredibly difficult and life has never been the same. I was then put on my 3rd medication and I am now on the 7th and last one available, but am still getting worse.  Unfortunately, I also had to stop riding in the summer of 2020, but I hope for a day when I can get back in the saddle.

I have been hospitalized 8 times over the course of this journey from 2-8 nights and each time is similar to suffering a stroke and then the aftermath is trying to recover from one which is months to years. MS is not easy. Mine is painful and disabling and discouraging, just as it is for so many others. MS is unpredictable as it is for every single other person who has it.  

I got more damage in 3 months in my brain in 2014 than I had in 17 years due to side effects from an MS medication, which landed me in JAMA Neurology. Not a place anyone wants to be. I would rather be in a horse magazine for winning a competition with a huge smile on my face feeling proud and happy.  I had so much brain damage from that debacle that I was flat on my back for months, couldn’t see much at all, was confused about almost everything (particularly dates, times, months, years and my place in them all).  I sat staring at a wall for a few years mostly and could not balance my checkbook and didn’t remember that taxes were due at all.  I could not understand expiration dates on food and always thought people were somehow getting ahold of old expired food that was going to give us food poisoning. Life was so bizarre for years. I cried all of the time. 

My infusion got delayed by 10 weeks due to Covid and in June 2020 I was picking weeds in a field and I noticed something I had never felt before in my life.  It was as if my hip flexors got shortened and also rotten like old rubber bands. I could barely move my legs without yelling in pain. For months, I was asking my doctors to help me and very loudly.  I could not get dressed, shower or even get in or out of bed without yelling in pain. My doctors have loaded me up on enough medications to function but I have a large bag of pills (3X day) and I now struggle to walk 1/5 the amount I used to without the sensation of piranhas suddenly attacking the outsides of my legs and bringing me to tears.  I have charlie horses on the tops of my legs also that feel like strong vacuums sucking the muscles to my thigh bone. I am still acid washed as well all day.  MS is a formidable enemy.

This disease is so incredibly sad, discouraging, physically and emotionally exhausting, physically and emotionally painful, and depleting in almost every single way hour by hour, month by month, year by year. It is cumulative – all of it. The main thing I have learned from it all is that human kindness is the most important thing in the world. Period.  It comes into play whether you are tired and grumpy; feeling isolated and scared; unable to cross the street without help; in the hospital and relying on the nurses to get you through the pain; getting support for this project, which will could change the world of MS forever.

This is my first outing - I have never gone public in 25 years.  You might be asking "Why now, Mary?"  Or "Why this project?"