Wednesday, February 11, 2015


Yesterday I told someone that today would be 22 years since I was diagnosed with MS.  (I didn't tell her that also means I've had MS for over 25 years, because the diagnosis took 3 years, and it was a diagnosis of "lesions consistent with a demyelinating disease; probable MS" - which is still the case today).  She asked why I remember the specific date - why do I want to remember the specific date, when it wasn't a good day, said in a critical tone which was irritating.  And she also asked, in the same tone, if I also know the specific date when I started learning to walk again.  Clearly only good memories are ok.

I thought of another friend of mine who has a spinal cord injury and she once told me, "Beth, we all have _our_ days," meaning that many people with disabilities know of the specific date when an injury caused their disability, or they were diagnosed with something.  People remember the dates when loved ones die.  Dates do not all have to be happy.

But today actually isn't a bad day.  It is a good day.  You see, I spent 3 years, between ages 17 and 20, which as a side note makes me a bit bitter because those ages should not be spent how I spent them, not knowing what was wrong, 3 years of thinking that what was happening was not real but was in my head, 3 years of not knowing whether every physician was really taking me seriously, 3 years of medical test after medical test after medical test with no answers, and 3 years of continuing to ask God what was wrong and when would I know?  Near the end, there was a letter from my neurologist to my doctor at school saying basically, "Here is the plan.  We have very few tests left.  If these come back normal I will be at a loss as to what is wrong with Beth."  There was great uncertainty.  And on this date, I had so many more tests, because the tests that began the day changed when something was found - so it was more of a double test day.  It felt like while everyone was experiencing college, I was experiencing a personal hell, and the year I was diagnosed, my roommate and I had a small, dark dorm room on the fourth floor, down the hall from some girls who liked to party.

Late on the date of test after test after test, my neurologist told me they thought I had MS but needed more bloodwork to rule out other things.  That was difficult, but when I came home for spring break, my high school orchestra teacher said it best, "Beth, isn't it good to know, finally, what is wrong?"  And yes it was.  It wasn't in my head, physicians would now take me seriously, and the tests were finished.  February 11 is a good day.  It is a day when I can move forward.  It is a day I can let go.

After this day, one of the first things I did was to go talk to the minister of the church on campus.  I had an instinct to talk to him.  And that was the right instinct.  He helped me to know that everything would be ok, that life would continue.  There is a balance.  There is MS, and there is living life without dwelling on MS, no matter how difficult it may be.  We didn't talk specifically about that. We prayed.  I suppose we handed MS to God.  And God held me.

Throughout the years, there has been the balance of living a life with MS and living a life not defined by MS.  I am an athlete.  How does one find balance when the favorite part of life seems to be slowly stolen?

While other people who were my age, 20, tended not to go to church during this time in their lives, but to sleep in on Sundays, I continued to go.  I found balance at church.  Church was a place of peace, a place where I could somehow consider the balance between MS and not being defined by MS, of finding myself as an athlete when I lost the physical component of athletics. Church was stability when so much was not stable.  Church gave me balance.

As to the other question - do I remember the day when I started learning to walk again?  Not exactly.  I remember the last day I went on steroids - June 10, 2010.  And sometime shortly after that, I started taking Ampyra, and learning to walk again.  I just looked it up.  I first took Ampyra on Saturday, July 31, 2010.  On Monday, I felt a difference.  By Tuesday I was already walking better.  Life is good.  There is balance.

Today marks 22 years of knowing, of balancing, of losing the ability to walk with each attack I had, and then one summer, of standing at my kitchen island and realizing I had been standing there a long time, and of realizing that not giving up had left the possibility of walking and perhaps running, wide open.

Thanks be to God, for all the good times, and all the bad, for walking with me through these 22 (or 25) years.