One year ago, today. My life changed.
The date of my life changing coincides with a day that
changed the lives for many thousands of people across Japan – the day of the
terrible earthquake and tsunami. My day happens the day after that.
Brad got back from Korea within moments of the earthquake.
He called me from the airfield and we were questioning whether to evacuate our
apartment due to the tsunami warning. He came home and we stayed. We watched
the water – it was calm and lovely out. A very surreal day.
That night things for Brad went into overdrive. Operation
Tomodachi began and his work would get busier. We heard stories about the
tsunami and feared for the safety of all of those affected. It was a sad time.
That was Saturday. Sunday night Brad was working late (as
everyone was) and the kids were in bed. It was LATE and my head started to
ache. A headache that consumed me worse than I had ever felt before. So bad
that I scared me and I called my neighbor (and one of my best friends) Laurie.
She came down and sat with me and tried to talk me through it. She called Brad
(who came home) and eventually I was able to sleep – terrified that something
was terribly wrong.
Monday morning. 1 year ago from as I write this. I woke up.
The headache was gone and I got up to get ready to make the kids breakfast – my
world was spinning. Not in a vertigo way but in a “I am on a very wavy boat”
sort of way. I couldn’t get my bearings and I felt strange. Brad helped get the
kids ready for school, I made a doctor’s appointment, Laurie walked the kids to
school.
One year ago today my life changed. Little did I know that
the strange symptoms I had been having the weeks before (tingling in my face,
ringing in one ear etc.) paired with the strange headache and then waking up
not being able to stand up would lead my life into a diagnosis of Multiple
Sclerosis.
Multiple Sclerosis. What in the world was that? I had heard
the term my whole life, but never really knew what it meant. My fantastic
neurologist (and friend) Rob Beck explained it so clearly to Brad and I that I
scientifically “got it” and understood what was happening inside of my brain
that was making me feel completely not myself.
The one thing Rob couldn’t help me with was my internal struggle with my
diagnosis and the relationship I would have with the disease in the future.
The fear of the unknown. That can describe my relationship
with my MS. Unknown if an episode will happen again and when and how bad. Will
they get worse? Will they be more frequent? Will I be able to be “normal”
again?
Here I am a year later and I can tell you that I am still
scared. That fear of an episode happening again is always there. I have started
to train for the Marine Corps Marathon and as I run I keep thinking about where
I was at this time last year – amidst training for The Great Wall Marathon with
my friend Laurie – my episode happened 4 days after a 16 mile run. I was
nervous about pushing myself for the entire year. I know that my running had
nothing to do with my MS episode last year, but it still is a hang up for me. I
know that this training will be good for me, and help me over those fears.
I find that I am still trying to figure out how to have
relationships with others with this in my life. New people mostly. I haven’t
told many people here that I have MS – my close neighbor and then the woman
that I am co-organizing the kid’s running club with – simply because what if I
wake up one morning and can’t be there to do my job? Otherwise I probably
wouldn’t have said anything at all…
I am back to this draft – it is now a month later and I just
had my check up with the Neurologist a couple of days ago. It’s nerve-wracking –
going back to the Doctor and seeing where I am, how I stack up, if I am missing
symptoms. Is the medicine working? Is my diet change helping? So many
unanswered questions.
I am happy to say that my Neurological exam came back
completely NORMAL. Normal. Amazing. The MRI also showed no major changes –
which is a great sign. What we can deduce from this is that I am a state of “remission”
– not the exact technological term, but the best way I can describe it. We can
also assume from this that the medicine I take and the diet is also making a
difference. It makes me feel good about it. I really dislike the shots that I
take (and Brad administers because I am still too chicken to do it myself), I
dislike the way they make me feel the day after. I have embraced being a vegan
for the most part – as long as I allow myself some things from time to time
that make me feel like I am not depriving myself, it all works.
As for my relationship with my disease… Maybe this blog post
is a way of publically acknowledging it. Maybe I will start to be more open
about it and start advocating for research and things. It is a personal
process - trying to establish my own
relationship with it. I am not living naively, recognizing that tomorrow I
could go into a flare up or feel crazy off, so I am living each day as well as
I can. I don’t want to use my disease as an excuse and continuously hope that I
can “beat it” or live with it happily and wholly. I have a whole lot of my life
left and I want to live it with no regrets.
That is all for now.
