A New Normal

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 9^th 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 20^th, 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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