I’ve been writing a blog for almost 8 years and nearly each of the over 100 entries start with an anecdote of some sort. As my own writing has developed, I used the beginning of each post to set the stage for what was to come.
A few months back I had the absolute best opening for this
blog that I’m writing now. It was witty and clever (at least I thought so) and
would be the perfect opening for the news I was about to share.
I then I forgot it.
For the life of me, I couldn’t remember what it was. All
this time later, I still haven’t a clue. When sharing this story with Kate, I
came to the realization that this experience had indirectly created a new
anecdote to replace the one that had slipped my mind. I couldn’t remember my opening
because, quite frankly, I was having trouble remembering anything. This loss of
memory was just one of the many symptoms I had been dealing with off and on for
the past seven months, back when I was first diagnosed with Multiple Sclerosis.
Back in December of 2015, the strangest of things happened:
my left hip started to go numb. Soon after this sensation (or lack thereof)
began to creep down my leg. Within a few weeks, I was limping and soon I
couldn’t feel my entire leg down to my toes. What was it? Did I need to see a
chiropractor? Was It related to my hernia surgery the previous year? I visited
my GP, was soon referred to a neurologist and waited interminably for insurance
approval for an MRI (I thought that stuff only happened in socialist Europe!).
When all came through I was diagnosed with transverse
myelitis, a legit 1 in a 1,000,000 condition that is an inflammation of the
fatty substance (myelin) around the spinal cord that crossed the signals being
sent out to my legs. The site of the inflammation determined the location of
the sensation issues, hence the problems in my thoracic spine (fancy
description for the middle of my spine/words I never knew or had to worry about
before) led to the problems in my legs. My neurologist soon had me admitted to
the hospital for 5 days of steroid treatment to address the inflammation. While
there, I had endless visits from medical students to see in person the
condition they had only read about in their books. I was walking with a cane
but luckily was discharged in three days, one week before Christmas, including
the Christmas Eve dinner that we would be hosting. I completed my treatment at
home and was off the cane and back to normal after a bizarre month and a half.
All seemed normal until the end of April when it came back.
This time, less severe but definitely impacting the sensation in my feet as
well as headaches and fatigue, something that could easily be misattributed to
life as a 9th grade teacher with two small sons. More MRIs, a spinal
tap and multiple doctor’s visits left me without a proper diagnosis, as
recurrences of transverse myelitis are rare. It never really went away, I soon
had problems using the bathroom (sorry to drop that one you, poor reader) and
at the beginning on August, I was unknowingly entering the scariest month of my
life.
After returning from a trip to Cooperstown, I began to feel
the “numbness” on my arms. This was new. This was worrisome. More MRIs showed
large lesions of inflammation in my cervical spine (my neck, for you
non-medical folks out there). Soon my right leg was numb and I was walking with
a noticeable limp. I was back on home IV steroid treatment for the third time,
administered each night by my saintly wife, but things we not improving. All
the while, the summer was disappearing while I lay in bed, losing time with my
family as well as the final days of our soon to be sold family home in Montauk.
My neurologist recommended I undergo plasma
pharesis, a blood spinning treatment to clean up my blood. This amazing
treatment slowly but surely got me back on my feet, although it would be weeks
before I felt confident moving around independently.
“I think we have an answer, you should come in to the
office.” These were the words of my neurologist from the other end of my phone
when he called me with the results of my most recent brain MRI. While I was
confident it wasn’t anything life threatening, I knew the news that was coming.
Over the previous weeks, I had recited the same line to people that if it was
MS, “that’s fine as long as I finally know what it is” but the repetition of
that line hadn’t fully prepared Kate and I for the news that I did indeed have
a disease that I would carry with me and us for the rest of my life. My own lack of knowledge of the disease only
complicated my feelings, especially since the little I did know was mainly the
spastic and mute version of comedian Richard Pryor that existed before his
death. I knew I didn’t want to be like that, but the previous eight months had
already taught me I had no choice in the matter.
I was immediately put on an aggressive course of treatment to address both current and future recurrences. While this medication had the un-welcoming potential side effect of brain infection (and death), I was at least finally on the path towards battling this mystifying disease. Luckily, bloodwork showed that I wasn’t at risk for the brain infection and other than some fatigue (a symptom I was already experiencing), the treatment has been great.
As with many life events, the past 16 months has been
difficult, enlightening and most of all a chance to learn. The only redeeming
value of challenge and struggle is that it gives us a chance to learn through
reflection. Here are some of the things my illness has taught me:
Life is a consistent adjustment to new normals. Things change
all the time. Sometimes it’s what we eat for breakfast, sometimes it when you
lose your parents, have a kid or even lose the ability to take a stress free
piss. Regardless, we must adapt to these new normals or have them permanently
and negatively change the people we had been before them. Adapt and overcome is
a phrase that can apply to all of us, but my wife and I have most definitely
put this creed to the test in recent months.
Be there for one another. It’s cliché to say that trying
situations help to reveal those who are most true to you but this has
definitely been the case, particularly in August when I was at my absolute
lowest. Some rose, some shirked. This not only taught me a lot about the people
in my life but also about the importance of letting people know that you are
there for them, particularly during difficult times. A few seconds to send a
text or note of support can mean the world to someone who is struggling.
Never take for granted the simple things. During my first occurrence,
I remember reading a Curious George
book with my son. In it, the man in the yellow hat walks through the city with
George on his shoulders. With everything that was happening, I had the
frightening and heart breaking realization that I might never ever be able to put
my kids on my own shoulders again. Potential activities that I have looked
forward to doing with my boys from playing catch, riding bikes or rounds of
golf all seemed to dissipate around. For over a month, I couldn’t pick up my
sons, drive a car, or walk without assistance. I lost all of these things. I
never want to lose them again so each time I get to do them I will appreciate
them, because you never know when you might not be able to take a piss (sorry
to go back to this again but it’s really quite a horrible nuisance)
I chose the right woman (or the right woman chose me) This was
not a new learning for me, but instead a confirmation of what I have known
since 2005. My wife has been a Gibraltar size rock of love and support; an
advocate who listens to me when I’m struggling, patient with me when
frustrated. She has carried our family over the past 16 months, caring for two
young boys and a sick husband while also completing a daily 3 hour round trip
commute to a job in which she helps hundreds of teenagers navigate through the
difficulties of high school. She is amazing. I genuinely know that without her,
I would be nothing.
So there you go. A long and unknown road stretches out ahead
of me. With my wife and sons beside and the love of family and friends, I’m
ready to take this journey with an optimism that will help buoy me in trying
times.
Now if I could just remember where I put my keys.
On May 20th,
my family and I will be participating at the MS Walk at Jones Beach. Any
donations to our fundraising page can help the MS Society continue to do the
research needed to fight this disease.
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