I have decided to try telling some of my more difficult early multiple sclerosis stories. I was scared to shares these torturous tales as I do not want anyone to judge me for my feelings of fear or fright. Like a friend once told me, I was making “mountains out of molehills”, and I should “build a bridge and get over it.” However, this pain still lies deep in my psyche, and as I write about it nearly twenty years later, I still feel the anxiety and dread. This disturbing tale is going to take much time and tears to put down in writing.
It is my understanding that talking about issues such as these is imperative to one’s mental well-being. However, these troublesome tragedies are difficult to think about and are no more comfortable to put into words. I have to keep reminding myself that everyone deals differently, which is why some people come back from war mentally broken, and others have no visible or invisible scars. The following blog is my war story, and it has broken me mentally, leaving scars on my psyche that will haunt me forever.
In Columbus, Ohio, the metro parks hosted a weekly winter hike program every year, and my mom invited me to join her and my stepdad. Up to this point, I had virtually no MS symptoms, although this time, that would seriously change. On this day, I would meet the maleficent monster who would haunt my nightmares and negatively change my life forever. The hikes are held at various parks around Columbus, Ohio, starting on Saturday at 9 am. I showed up in the morning wearing my hiking boots, ready to take on the snow Mother Nature spread that night.
Most people had proper pad paraphernalia, although a few sadly did not understand the importance of suitable footwear. There are often several trail lengths to choose from, including a short one mile a three-mile, and sometimes five milers. This park offered one and three miles, and being we were all avid hikers, we chose the lengthier three-mile route.
The hike started on time, bright and early, even though it snowed significantly overnight. About a quarter of a mile in, I began to feel extremely exhausted and verified with the rear guide how far we had gone thus far. I told this rear volunteer I would be going back to the beginning and explained I was fine, but I felt a little unwell. Unfortunately, that was when I should have quickly clarified I have multiple sclerosis, and extreme cold can quickly and viciously rip all strength and energy from my being. Right then would have been the perfect time to define my monstrous MS malady, and it would be in my best interest to have someone walk back with me. However, I was a big bad bull-headed Marine who was embarrassed and ashamed to ask for help even at my detriment or peril.
As I walked back alone, the wind was bitterly cold and felt like sandpaper dragged across my face. I could feel my strength vanishing as every step became slower and was more difficult, just as my thinking became sluggish and lethargic. There was no one on the trail, and my weakness was quickly overpowering my tenacity and perseverance. I had less stability with every passing second, and I needed to lie down for just a minute to catch my feeble breath, then I would finish the hike back to the start. After I laid there for several minutes, I heard a voice call out, and I panicked. I jumped up and ran to a walkway underpass about ten yards away, and I stood against the wall as the group hiked by.
I have no clue why I ran, but it was likely because I was always an able-bodied, weightlifting, tough-as-nails Marine, and I did not want to appear weak. 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 and sluggish walking were 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 uphill step felt like climbing Mount Everest, all the while the guide continually looked back and cautiously observed my every step. It felt like I was caught in an MC Escher drawing as the path just kept coming with no end in sight. This female guide did not understand nor question my arresting ambulation oddities, and I did not share. I was an Eagle Scout, US Marine, and a young guy in his twenties and felt incredibly ashamed of my insufficient capabilities.
When we made it back, I sat silently on a bench for twenty minutes or so before I began to feel physically fine. Once I was feeling up to par, I decided to join my family to hear about their adventures. My mom told me about their hike and then asked where I went, and I downplayed things by saying I found a bench and sat for a while. It turned out my hike was a half-mile of sojourn I will never forget.
I now understand my MS and the physical restrictions and challenges that limit my abilities in these situations. Unfortunately, sometimes I take things for granted, which can cause havoc and encourage me to devalue typical transfer movements. These thoughtless actions can force me to make mistakes that can threaten my well-being. However, I am always trying to think through everything I do, including sitting positions and transfers. So, 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.
Empathize not sympathize
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