As I approach my nine year anniversary with this disease, ironically following a week in NY seeing Dr. Sadiq and Dr. Kanter, it feels like a good time to share my story.
April 7, 2007 – A Few days after returning from coaching youth ice hockey at an away game championship series, I woke up paralyzed from the chest down, barely able to move my legs. My first thoughts were to just wait it out (thinking surely I’d rebound), but eventually I made an adult decision and was off to the emergency room (thank god for a great roommate). In my mind I fully believed this was nothing more than the result of a bad flu or maybe a little electrical shock from having futzed with the Christmas lights a few days earlier.
The Hospital quickly had me in the MRI tube for what felt like an eternity then off to a room with a bed where I laid for what felt even longer by myself. Finally a nurse poked her head in the door, checked to see if I needed anything, then with a closing statement that shook me to my core, said “we are not sure what it is, but we seem some marks on your spine, we think it could be spinal cancer, but we are not sure….” And the door slams shut before I could even make a sound, and I was alone again. At this point with as little knowledge as I had in the medical world, I just laid there staring at a white 2x4 hung ceiling, my eyes covered in tears, with even less physical ability in my upper body then I had in the morning. All my thoughts just automatically went down the road of “is this the last ceiling I am ever going to see? Who will feed my dog? Is this really the way it’s going to end?” After about 30-40 minutes of this, the same nurse poked her head in the door again and just said, “we ruled out cancer but we think it might be MS….” Again, door shuts. I was ecstatic it wasn’t cancer, but with zero familiarity with MS and how no clue how it was going to actually affect me.
The day quickly shifted into high gear, more blood work was drawn, scans and x-rays taken, and then the trophy, my first spinal tap, conducted in only a way that a bad sitcom writer could have imagined. Hanging over a bed in the room, fully exposed to the doctor and 2 others in the room to help, with a larger needle sticking out of my back, in walks my girlfriend (my wonderful wife now), Teresa, who halted with a screech, causing the doctor to turn with a screech, only to make the needle shift in such a wonderful way to cause myself to screech. The rest is pretty blurry, but it lead to my parents speeding down to Washington DC from NY in record time, and me spending a week in a hospital in indulging myself on cookies and pudding in a way that only steroid treatment allowed. From that time, my ability to do anything with my legs as I once could forever changed.
I have not run a step comfortably since that day, and over the last nine years, despite my efforts, have had to watch one thing after another taken from me. In the post-diagnostic haze I was quickly fired from my job (for what I feel was just lack of knowledge of the disease), I quickly agreed to move back to NY with my parents for the ease of stress, the helpful hand, and the ability to work with my father without any pressure. Teresa quickly joined me, no questions asked, and to me this is one of the most amazing acts by anyone I have ever heard of, dropping EVERYTHING and going. I thank god every day for this, for convincing my wife to marry me in 2010, and for my two beautiful children, Bauer (4.5) and Tenley (2.5), and accomplishing these things before allowing MS to take anymore from me.
In the beginning I truly tried to follow the doctors’ orders, and live my life as I did prior to the diagnosis, but it became harder and harder as I realized more and more of the things I could no longer do. This is one of the major things I love about Dr. Sadiq and Dr. Kanter. When I get in for a checkup, the brutal honesty I am able to receive from both of them goes a long way towards keeping me sane, and reminding me to not give up the fight. I know everyone’s MS is different, I’ve heard recently it referred to as a finger print, and it couldn’t be more accurate. The hardest thing I’ve had to deal is the dark days- the days when I just want to give up because it’s often so hard to see the positives in the situation when you feel you’ve been robbed of a previous life. This went on for a long time for me, and my attitude changed only recently.
nIn 2014 Teresa and I relocated our family from NY to Seattle (her hometown) in an attempt to provide our kids with a better way life and provide me with a much less stressful existence. After much negativity & skepticism from myself, I can now truly say I appreciate the situation. I was just back to NY recently and a friend mentioned ‘you can’t truly appreciate just how burnt out you are on NY until you leave NY.’ I’m born and raised in NY, and I never really saw that, never allowed myself to see that, I always assumed I would end up back there, and now I can truly say I see it, and it’s not a knock on NY, not at all, it’s a knock on me and my life, some people are just not cut out for it, and now the MS had made me not cut out for it.
One of the things MS has taken that was a large part of my life prior was the ability to skate and play hockey. I have been playing my entire life and being on the ice became part of who I am, from playing in adult leagues to coaching travel hockey, I was always on and around the ice, but the progression of MS on my body didn’t allow me to continue with these activities. The drop foot and weak hip had started in my right leg for many years, but lately has become worse in my left leg as well. I went from no brace (and not even having to tell people I had MS) to wearing a dorsi-lite foot brace for drop foot, to Musmate to help lift my right leg, to using a cane, and now I rotate with a two legged Musmate and additional dorsi-lite for the left foot. I have had more than my share of falls and embarrassing moments. They have now become a bit more frequent, which in turn means they have become a constant thought and concern of mine, driving my anxiety through the roof, all of which is terrible for MS. All of this seemed to be all I could think about and it really started to drag me down. I spent more time over-thinking the bad then thinking about how to actually do something to fill the holes with something positive. Finally I realized there was more than this, my life was more than this, and I just needed something to balance this out. In a local rink near our home, I found a group of people suffering from similar physical impediments, but dealing with their unique situations on the ice. I had heard of this kind of hockey, even seen some in the Olympics but never really thought about how to get involved. Sled or Sledge hockey was the ticket, it was the vessel that would get me back to my favorite place in this world, on the ice. I had seen this on tv briefly, even in YouTube videos and it looked pretty simple, sit on a sled and push yourself around, how hard could that be? Well let’s just say it’s the hardest thing I have ever done, by FAR. I have only been participating for a few months now, and each week I do feel like I am getting a little more comfortable. I spent the first practice lying more on my side than I did upright on the sled. Working with the program, I’m using outriggers to keep me upright, which helps train my balance, but more importantly allows me to purely enjoy being on the ice and not allow it to beat me. After the first practice some teammates made it a point to lend their support and ask me not to give up- it’s hard on everyone at first, and you have to leave your ego at the door. I could only respond to the team by telling them this has become my new passion and I would do everything I need to do to master this sport as best I can. And there is a LONG way to go…