It is too deep, just let me sleep…

therapyI 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.

ms questionsIn 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.

winter hikesThe 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.

snow deadAs 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.

panic timeI 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.

park benchI 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.

ms bookI 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.

Accession obsession…

fred aI found true beauty in the love of my life, and she has grace and elegance like none before her. My lovely has a poetic symmetry that allows for smooth Fred Astaire like movements while having the curves of Marilyn Monroe. This glamorous Venus allows me to be myself while helping to keep my independence. However, to receive this gift from the heavens was a difficult battle from the start. To obtain this alluring artistry, I needed real fortitude and strong tenacity as the dissension was discouragingly disheartening. Allow me to tell you the story of getting my first fantastically fitted and life-altering

My first wheelchair was a standard hospital-style wheelchair that I received from a different donation program. The guy from this awarding agency told me how ninety-nine percent of their requests are for power wheelchairs. He explained that they would not ask for my donated chair back and that I should plan to keep this heavyweight hand-me-down. This chair was sixty-five pounds and folded, but did not disassemble though its size and weight made it very difficult to put into most vehicles. Although my mom often exercises and is fit, it was a struggle for her to put my chair into her SUV.

small chairAfter a lengthy discussion with my doctor, she prescribed an ultralight wheelchair. I took this prescription to a local seating clinic where the discouraging part of the story begins. I rolled into the clinic in my wheelchair that was oversized and ill-fitting for my greatly gaunt body. They helped me to sit on a slightly padded table so that they could begin to take a plethora of my body measurements. This assessment was to ensure that this chariot would fit me comfortably because as they say measure twice and cut once. Someone using this personally sized chair for such a long time needs anything that encourages complete comfort.

power chairAs a thirty-eight-year-old man in relatively good health, her next statement threw me for a loop. Not talking to me about my options, she merely asked what I was looking for in a power chair. We did not discuss the benefits of the different styles, so there was no mention of the option of manual wheelchairs and their advantages. I quickly spoke up, and vehemently said that I wanted a manual wheelchair. She then explained to me that power chairs are much easier to pass through Medicare. I explained how that was nice, but then I reiterated assuredly that I wanted a manual wheelchair.

After way too much cajoling, I was lowered onto a manual wheelchair that was only adequately fitted to my frame. This temporary chair was used to test my mobility ability testing my strength to self-propel. I was too stubborn to say, uncle, as I was run through the paces running me up and down a ramp and over several speedbumps. They doubted my conviction and continued to challenge my endurance by having me push myself down a long hallway. This relentless testing proved that I am a bullheaded Marine who was not willing to back down from this exhausting investigation of my capabilities.

traMy current wheelchair is custom-fit for me and only weighs a hair over forty pounds. This lack of bulk allows me to propel myself most places while not feeling like I am pushing a tank. The chair disassembles and reassembles with ease and can fit into vehicles from super small to the sizably substantial. The tires have airless inserts eliminating flat tires or the need for the manual manipulation of an air pump. It has indeed helped me to keep my self-reliance and lengthens the list of places that I can traverse.

It is unfortunate that many times in this world, people become self-focused asking themselves what I can gain from this. This me-ism based world can truly hurt those in need and benefit those looking to get just a little more for themselves. We must be diligent in knowing what we need to be heroic and heard on the reasoning for our desires. Most importantly, we need to be courageous and ask questions and stand firm in defense of our ideals.

Be strong vocally and get strong physically.

Heartfelt humanitarianism…

help othersThe other day someone asked me a question that baffled and bewildered me, yet this query that was posed was so simple. They asked: why do I help others if I do not know or owe them anything? I sat quietly for a moment and evaluated this inquisition and the best way to explain the purpose of this lifelong altruism of mine. Truth be told I also contemplated on why we are friends as he was honestly confused by my humanitarian hands. He did not understand why I would not buy myself an unnecessary and unneeded better Bluetooth headset since I had the money.

When I was growing up, my family was lower middle class, although we were a hare’s breadth away from being poor. Our family held onto the title of the lower middle class like it was the last twinkly at a weight watchers meeting. My mother, who was a single parent, worked a full-time job and went to college, so we rode that tightrope between poor and poor-ish for seven years.

poorWe were low-income, but I had no idea what being poor genuinely meant until I met some specific people in high school. I was not afraid to make friends with anyone, including the people that were shunned and socially shamed because of their appearance and clothing. I made good friends with those who were the real impoverished individuals in high school. Freshman through the senior year were the years it was most difficult for a kid to hide the family financial stance. So I had both rich and poor friends though I learned the most about life and the real meaning of friendships from those with the least.

I learned from seeing this downtrodden lifestyle and saw how my friends did not work so that their parents could do so. Most days, they needed to watch their younger siblings because their parents could ill-afford decent childcare. I quickly realized that when we were going to eat fast food, they could not buy food for lunch. I did not want them to feel bad and look needy if I only bought food for them. The solution was to simply pay for the group as to not single out the neediest among us. It felt good to do good for others without making them feel embarrassed or ashamed for not being able to contribute financially. This action was done with no expectations of payback, thus began my altruistic life.

I have seen and experienced some of the worst neighborhoods that Columbus, Ohio, has to offer. I was told that I had to physically see the poverty-stricken communities to comprehend the struggles of the penniless people truly. Walking in these areas and talking with some of the residents, I learned that many put forth a valiant venture to lift themselves out of destitution. This effort tends to reward them with a losing battle, typically moving them one step forward and two steps back. Sadly, they are not afforded the opportunities that I have seen others use to their advantage to raise out of the impoverished lifestyle.

flowersMy friend later asked me: if that is the case, then why do you do things for people who are not in need? He saw me order flowers for the community center where I swim and heard that I bought dinner for a group of friends. This question tells me that I should start shopping on eBay to find new choice chums.

There is enough bitterness, hatred, and contempt in this world that truly affects everyone. These negative impacts are not the same for everyone, but it affects everyone none the less. So in my eyes doing good whether they are in need or not are putting a bit of kindness into an otherwise acrimonious world. Giving to the destitute or affluent has a positive impact on the recipient and the altruist alike.

humbl1To make the world a little better in my eyes, I give to many charities like soup kitchens and food banks. I have helped supply clothing and furniture for local free stores and given out grocery gift cards to plenty of needy families. I have purchased school supplies for many children and Christmas trees for families in need. I have sent flowers and fruit baskets all over town in an attempt to bring a smile or two. I have even bought many meals for friends both in large groups and one on one. I have been told that my giving is excessive. However, I say that it is not enough as I would like to do more, but my income will only allow me to do so much.

Please do not think that I am braggadocios because that cannot be further from the truth. My mom tells me that I am simply leading by example, and yet I genuinely hope that people are willing to follow suit. I understand that not everyone can afford to do these things, but little acts of kindness make a difference in this bitter filled world. So the next time that you are out at your favorite coffee place, buy a coffee for a stranger or do some other random act of kindness. I guarantee you that it will make them feel good, but it will give you a great feeling as well.

Be the change in the world that you want to see- Gandhi.