I decided to tell some of my more difficult early multiple sclerosis stories in a series of blogs one at a time. I have feared to tell these tales because I do not know if people will judge my feelings and what they think is minor. Like a friend might say that I am making mountains out of molehills, and that I should simply sweep it under the rug. As I sit and type this nearly twenty years after the fact I realize that the pain still lies deep in my psyche. This disturbing tale is going to take much time and tears to put down into a blog.
It is my understanding that talking about issues such as these is imperative to one’s well-being. As these tragedies are difficult to think about and so far are no more comfortable to put into text, I hope the sting disappears. To help me avoid the fear of being criticized for overthinking this situation, I want to type it into a document and share it. The average blog takes me a week from start to completion, but this one will take longer because of the emotional starts and stops. I do have to keep reminding myself that everyone deals differently, and that is why some come back from war mentally broken, and others are fine.
In the winter of 2002, I had been heavy weight lifting for a year with my friend Mike, who is also a Marine. In the first year, I dropped weight so quickly that I went from a waist size of 40 to a size 29 back to my Marine Corps days. So here I was after my MS diagnosis, newly divorced, diagnosed, and deeply discouraged at my situation and not knowing what to expect. My MS doctor never told me what to plan for with my condition because there were a plethora of possibilities. For this reason, I decided to keep living my life normally as I was in denial because I had no real symptoms at that time.
In Columbus, Ohio, the metro parks host a weekly winter hike program every year, and my mom invites me to join her and my stepdad. Up to this point, I had virtually no MS symptoms, although this time that would significantly change, today, the MS beast would rear its ugly head. This day I would meet the maleficent monster that would haunt my nightmares forever.
The hikes would start on Saturday morning at nine and held at various parks around Columbus, Ohio. I showed up that morning at my mom’s house at eight-fifteen with my hiking boots on ready to take on Mother Nature’s snow. Most people had proper pad paraphernalia, although there were a few that apparently did not understand the importance of good footwear.
There are often several hike lengths to choose from, including a short one mile a three and sometimes five milers. This hike offered the one and three miles, and being that we were all avid hikers, we chose the lengthier three-mile route. They also provide some sustenance at the end of the trek, sometimes including cold donuts or hot chili. There is also a beverage offering of water, hot coffee, and hot chocolate, bringing warmth to an otherwise cold morning.
The hike that day started very well as it snowed significantly overnight, but the morning was bright and sunny. About a quarter of a mile in, I began to feel weak and tired and verified with the rear guide how far we were. I told her that I would be going back to the beginning and explained to her that I was fine, but that I just felt a little off. That was the time that I should have clarified that I had multiple sclerosis and that extreme cold viciously and quickly rips all energy from me. Now would have been the perfect time to define my MS malady and that it would be in my best interest to have someone walk back with me.
As I walked back alone, the wind was bitterly cold, and I could feel my strength vanishing with every step. There was no one on the trail, and my weakness was quickly overpowering my tenacity, and I had less stability with every passing second. I needed to lie down for just a minute to catch my feeble breath, and then I would finish the hike back. After I laid there for several minutes, I heard a voice call out to me, and I panicked. I jumped up and ran to a walkway underpass that was about ten yards away, and I stood against the wall as that group hiked by.
I have no clue as to why I ran, but it was probably because I was an able-bodied weightlifting big bad Marine and I did not want to appear as a weakling. One of their group guides was left behind with me, so we walked back on this treacherous trail together. However, the walk was slow and desperately difficult, as my weakness was back. I tried to hide my wobbly walk from this woman, but I was as easy to read as a Dr. Seuss book. As we walked back in silence, every slight grade uphill felt like climbing a mountain as she continually looked back and watched my every step.
When we made it back to the central section, I found a covered area with a bench and sat down. I let the guide know that I was okay and would sit on this bench and rest and then return to my group. About ten seconds after the guide walked away, the park ranger’s pickup truck showed up and drove onto the grass ten feet away and parked. This park ranger waved and sat there like a mama bear ready to react if anything happened.
I rested on that bench for twenty minutes or so before I began to feel physically improved. I am not sure why the cold did not continue to strip me of strength, but I was feeling better the longer I rested.
Once I was feeling up to par, I decided to join my family to hear about their adventures. There was a dining hall type place where they ate the chicken noodle soup that they were served to warm their spirits. My mom told me about their hike and then asked me where I went, I downplayed things by saying that I found a bench and sat for a while. I could not and have never talked with anyone about my hazardous life-threatening unexpected undertaking that day.
I now understand my MS and the physical restrictions and challenges that limit my abilities in these situations. Sometimes I take things for granted, and this can cause havoc and encourages me to devalue typical movements. These unthoughtful actions can force me to make mistakes that can threaten my well-being. However, I am trying hard always to think through everything that I do, including sitting positions and moves that I make. Yes, this day significantly impacted my nightmares, but it also created a staggering impression on my understanding of multiple sclerosis and my life to come.
Education is knowledge and knowledge is power.
Scott's MS Life 