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

Staying organized in life is an immensely important endeavor, no matter who you are. It is beneficial to keep all of your doodads and doohickeys diligently divided so you can reach them in an instant. The intelligent choice is to keep your selection of widgets and digits neatly stacked for your quick, convenient calculations. In addition, it is essential to keep your entire calendar of events prominently posted for your perfunctory perusal.

As a twenty-year veteran of multiple sclerosis, I like to stay exceptionally coordinated and formulated to help my life run smoothly. However, things have changed since before I began using technology to aid my memory and simplistic systematization. Before utilizing any automation application, I was old school, and the inside of my house showed it. Everything was coated in a thick yellow layer of post-it notes, reminding me of things like I was a retired senile scientist. These notes reminded me of the most mundane tasks because, at the time, depression made sitting on the couch my only priority. These inked notes reminded me of everything, including brushing my teeth, meal times, and when to check the mail, along with many other just as ridiculous reminders. My bills were all piled neatly in several separate stacks showing me what had been paid and what was still outstanding.

There is now so much technology to help you stay organized excuses have gone with the dodo bird. 3.48 million Applications exist in the Android Play Store, and 2.22 million apps reside in the Apple app store, reminding us there are many apps for that. These application operations can assist you in budgeting, household chore reminders, or even when to simply throw old apps out the window. Gone is the day of tying a string around your finger to remind you of a task you inevitably forget anyway. The process of writing a to-do list on a piece of paper you soon lose track of is a thing of the past.

Smartphones, Google Home, Amazon Alexa, Apple Home Pod, computers, tablets, and even smartwatches make staying unorganized a problematic task. We MSers and most people need to find what works best to keep our lives formulated and coordinated to avoid confusion and chaotic clutter. Multiple sclerosis causes plenty of mind messes like shoddy short-term memory. So we must be aware of our weaknesses and find assistive tools to help us be the best we can be. Do yourself a favor and find apps to help organize all areas of your life, from finances to scheduling and everything in-between, as the possibilities are endless.

With organization comes empowerment.

The following entry is my last blog in the series discussing my standing power wheelchair. Let me first explain when a person is in an accident and must live in a wheelchair, quite extensive training is shared. This information improvisation is given because a wheelchair is life-altering when added to someone’s existence. However, I was given a manual wheelchair but not even five minutes of life lessons which would have helped make my life exponentially better. Although getting into my standing device is a top priority, these facts mean it is not the only purpose for physical therapy.

We have all heard the horror stories of how slow the Veterans Administration can be with the red tape. However, this is my story of how things have moved rather quickly to get everything I require and desire. This speed is even though the pandemic is an ongoing obstacle and constantly sends stuff to slow success.  After making my land-stand demand, it did not take long to receive the upright stature manufacturer via special delivery.

When I received the massive mechanical monstrosity from the Veterans Administration, I was faced with a new challenge. My goal is to learn how to climb this contraption calamity unassisted and stand several times a week. The VA rep and I spoke pretty extensively on my options to transfer from manual to power chair safely and unaided. We talked about building a platform to make my manual chair at the same elevation as my power chair, later recognizing this was a bad idea. Also, we discussed using a power elevating bed, inevitably adding six extra transfers into and back out of the standing device. This process would be too exhausting before standing and another bad idea. I only wish a physical therapist was involved in the conversation because the therapist who eventually helped me said a direct transfer is the best and only real idea.  She shared how it would become second nature and easier in the long run while challenging initially.

The first thing I learned in my new manual wheelchair life is the plethora of unexpected muscles required. Every movement brings a need for a new set of power holders you did not know you had or even needed. Pre multiple sclerosis, my choice for exercise was weight lifting, yet I was still missing the correct strength for my sad seated situation. There are a mere 206 bones in the adult human body, but about 600 muscles, meaning many do not get used in daily life. These muscles can get pulled off the bench when life situations change, like a wheelchair, requiring new abnormal movements. It is also my understanding every position and action the body makes requires stabilizer muscles. These equilibrium enforcers encourage individual external balance allowing synergy in the body movements.   

I wanted to wrap this blog series up in a pretty little bow and simply say all is well. I was hoping to share I am standing in my massive machine several times a week, and it only took a month or so of training. Unfortunately, that is not how our wonderful world works, and sometimes you must put in your blood, sweat, and tears. Many times you must refuse no for an answer and bust your hump and make life happen. It is essential to understand life often requires hard work no matter what you want to accomplish. So let me close by saying I am pleading for perpetual progress leading to plummeting problems, and my daily life is safe and secure.

At times life demands significant effort so make yours count.

Read more about my MS adventures, visit http://www.mymsramblings.com