57 minutes in purgatory…

I have been doing exceptionally well as of late. The problem with doing so well is that I have become uncharacteristically careless. Now I tend not to think before I move. Moving a little too fast, leaning a little too much or bending a little too far can cause significant catastrophes. The cleanup from one of these calamities can be very time-consuming.

The other day I was feeling especially good. This positive day was not a reason for the alarms to go off and the bells to ring. Instead, it should have reminded me to always be on the alert. The flashbacks of my problematic past should encourage me to watch every move that I make cautiously.

I rolled up next to my bed so that I could take my twenty-minute power nap. Transferring to my bed from my wheelchair has never really been a problem. The issue has always been when moving from my bed to my chariot. This bed to chair transition is a challenge because of not having the extra height from shoes. The lack of elevation having footwear when getting out of bed in the morning is what causes most of my falls. Although this slight elevation seems superfluous to most, it gives height at the precise moment that it is needed.

I have a folding style chair that sits at the head of my bed. At my last house, I used this chair to change after my showers, before bed and at wake up time. I currently use this chair mostly as a side table because I dress in my wheelchair and on my bed.

When I was parked next to my bed, I began my quick transfer procedures. I removed my feet from the footrest by placing them on the ground in front of the wheelchair. I noticed that my feet were not in a good position yet I did not correct this as it seemed minor. I scooted my rump to the edge of the seat of my chair to prepare for my simple fling and flop.

I have done this basic hop and drop of my derriere a million times with no issues. The problem this time was the illogically placed and uncorrected foot position. As always I placed my hands for proper push propulsion. I thrust my fists down to launch my posterior onto the new location. With my feet in the incorrect position, I twisted and landed face down on the bed. I was so close to the edge of the bed that there was nothing to grab onto for my recovery. I struggled to flip over and correct my position for several minutes only to lose the battle and slide off of the bed and onto the floor.

I have fallen off the bed before and most times I easily get back up. Most of the time I get into the chair at the head of the bed with proper body part placement. However, this time my body was not cooperating during my self-restoration.

I tried for fifteen minutes to get onto the chair at the head of the bed. My goal was to lunge myself onto my knees that are shoulder-width apart while leaning on the bed and chair. Once I am there, I would place my right hand on the chair and my left on the bed and simultaneously push my body up and turn. This push and turn would land my seat on the seat, and I would sit and rest for two minutes.

I am not proud of my behavior at that moment. After I had been struggling to get up for nearly twenty minutes, my language began to get colorful. I started to cuss out loud like a drunk Marine just before a bar fight.

I decided to forgo the folding chair route and instead attempt getting into my wheelchair. I began to shuffle around so that I could sit in front of my wheelchair to start my wheelchair lifting steps. I did this shimmy having significant difficulty. My legs were more of a hindrance than a help at this point.

As I shifted around to the wheelchair my legs did the spasm thing several times. This leg issue made any movements more of a struggle than wrestling a T-bone steak from a hungry dog. When I finally positioned myself in front of the footrest a new challenge emerged.

My new task was to get my posterior placed precisely on the footrest. This movement would be a difficult task if my legs were merely deadweight. However, they were in spasm mode and not cooperating by not bending. I placed my finally bent legs so that the knees were touching and my feet were shoulder width apart. Then I put my hands at the top of the leg rest and pushed myself upward. The goal was for me to push hard and lift my derriere and place it on the wheelchair seat.

Fifty minutes of continual struggle with two-minute periodic pauses for peace began to wear on me. At this point, I began to contemplate my life choices. Did I do something to anger the big guy? Was I putting enough positivity into the world? Do I give enough to charity? Do I give enough in general? Am I a good person? Although I have used foul language, I have never used the Lord’s name in vain. Does that count for anything? When you struggle like this, you think of everything.

My first attempt to lift my hiney onto the seat was a failure. For the next five minutes, it was: lift, fail, rest, reposition and then repeat. I finally removed the seat cushion lowering the goal height by four inches. At that point, my rear-end finally made it to my chariot. The last step was to get to the bed and transfer from the chair and replace the cushion. At this point, it was fifty-seven minutes of H-E double hockey sticks. However, I can call this massively malefic mission complete.

I left part of the story out because I did not want this blog to be excessively long. This challenging day reminds me that life with multiple sclerosis changes day to day. It says not to let consecutive excellent days lure me into a false sense of security. MS is my new normal, and any idea of “typical” is indeed nonexistent. I still occasionally question my life and I am not sure that will ever change. I am hopefully an okay guy and this was just a difficult day.


Do I belong???

Just when I think that I am not going to have anything to blog about something new occurs. A bright light has been shined on someone’s ignorance, imbecility, and inanity. My faith in humanity has been knocked down several pegs. This belief backslide of my faith was caused by the total lack of sympathy of society. Lucky for me in my old age I have learned how to avoid confrontation in these situations.

At the fitness center where I swim there are three rooms specifically for changing. These changing rooms are available for families or the disabled to use for pool preparation privacy. In all actuality, anyone can use these three rooms as there is no bouncer at the door. There are a variety of needs that cause the privacy need of these rooms.

I sat patiently waiting as I ate a protein bar and talking to a friend. A woman and her daughter came out of the dressing room as they gathered their belongings slowly. She looked at the two empty rooms and then asked me “is this the only room that you can use?” This woman had a brusque tone to her query as she nodded towards at the room that they just left. I said yes and then nicely explained how the other two rooms do not work for my physical needs. “You can’t use the men’s locker room?” She questioned “I mean these are the FAMILY changing rooms” she proclaimed.

The confrontation flummoxed me, and I was speechless at her interrogation. Thankfully my friend who I was talking with spoke up. He was quick to speak as he could see the look of consternation that was on my face. He explained that the men’s locker room is not set up correctly for the needs of the disabled. They went round and round as he tried to be clear and concise in his explanation. This woman was done with the information clarification conversation, so with her feathers ruffled she departed abruptly.

I often want to ask all of the antagonists one straightforward question. How does MY situation impact YOUR life?

Side note: Let us forget about the disabled for a minute and focus specifically on the original purpose of the family changing room. The initial reasoning was to help parents who had children from the opposite sex in the locker rooms. These rooms were extremely beneficial to moms with sons or dads with daughters. That means that since she had only her granddaughter-by her logic-she should have been using the women’s locker room.

I have experienced interaction from people like that in the past. My problem with this situation is that at the pool I am well known. She could have asked anyone in the pool about the guy in the wheelchair. I even saw this specific woman many times over the summer. Never has she asked me anything about my changing habits. She has also seen me go in and out of the family changing rooms many times.

There was one time when another woman saw me in the passenger seat in an accessible parking space. The handicap placard was sitting on the driver side dash. She spoke into the open car window and complained by saying: “the placard should be hung on the mirror.” “No, the law states that it needs to be hanging on the mirror OR the driver side dash.” I quickly stated. She just walked away without apologizing or acknowledging that she was wrong and learned something.

I understand that she did not know that law. She should have said nothing although she felt entitled to say something. I again pose my query: How does MY situation impact YOUR life? I have seen people question those who park in accessible parking spots many times. “You are walking fine. Why are you using handicap parking?” They say. “Because I have a degenerative disease that is very contagious so come a little closer” someone could say in jest.

I feel that in America people feel overly entitled. They seem to involve themselves in things that they know nothing about. But for those who want to be sensitive and helpful to those who are challenged, yes, say or do something if someone is being attacked. Stand up for someone who is being picked on, abused or devalued. However, say nothing if you know nothing.

Wise men speak because they have something to say, fools speak because they have to say something.

What the what???

I have heard that some people think that MS is contagious like a virus. This ignorant thought can cause people to avoid us. Others believe that we have mental problems making them ignore us. Some have thought multiple sclerosis is more than just an illness. This lack of knowledge may encourage them to shun us.

People can quickly put their foot in their mouths when interacting with people with disabilities. This action is because they think that they know but they have no idea. This bad behavior is noticed if medical issues are visible like using a cane, walker, or wheelchair. The humor comes in when they pretend that they know. I heard it once said, “It is better to keep your mouth shut and appear stupid then open it and remove all doubt.”

The other day I woke up on a swim day and something felt a little off. I had a challenging start to the day, but I was not about to give in. I was moving slower with a hint of weakness in my arms. Thankfully I always plan for an extra thirty minutes or more for unexpected MS and life issues.

COTA made me over an hour later to the pool than usual. At this point, I was late, starving and flustered. After this frustrating morning I finally was ready to get into the pool. I pulled up next to the chairlift and should have paid attention to the warning signs. As I transferred to the chairlift, I landed very close to the edge in a precarious state. Within a microsecond CRASH and down I went hitting the concrete floor. I did not say anything, but I hurt my hip and my hand a little. Sadly I hurt my pride much more that morning.

I have been a member at that pool for well over a year. In that time I have never dealt with a debacle like that. I say all that to say this: there was an older woman in the pool and her first words were “you should get a caregiver.” I had spoken with her several times before so I had to remind her of my situation. I let her know that I live alone and one hundred percent take care of myself. I explained that this was the first time that I have ever had this happen at the pool. I told her not to worry if I show no fear.

When a friend found out that I was diagnosed with MS, they asked me “how long?” “How long what?” I asked. “How long have you been given to live?” they clarified. I had to explain that multiple sclerosis is not a death sentence. I told them that I have the same life expectancy as everyone else. “I will live longer than some people and not as long as others.” I explained

When I was planning to move someone said to me “you should move into an assisted living facility.” “Why” I questioned. “because of…you know…your MS” they said sheepishly. I reiterated that I live alone now with no problems. I reminded them that people live with this condition both alone and with families all of the time.

Right after my diagnosis, I was assisting someone with their kitchen remodel. My friend had a buddy visiting. This guy kept staring at me all day like he thought that I would go into a seizure or something. He never said anything to me but stared hard at me his entire visit.

A friend who also has MS was shopping and was using a walker. A little girl saw her and asked her mom “what is wrong with that lady?” Her mom grabbed her and said, “Be quiet.” My friend went up to the little girl and nicely explained so that a little kid could understand. At that point, my friend looked at the mom and said “I would prefer to be asked then avoided.

Just the other day I was explaining an MS issue to a woman, and she was surprised by the facts. She was surprised and told me that she did not know. This woman knew what she did not know and was not afraid to admit it — what a concept. “You learn something new every day,” I said.

I think that people act the way that they do around the disabled because they do not know what to say or do. I understand that feeling to a point. What I mean is that you may not know what to say but just talk to us. We are like anyone else when you speak to us we will return the conversation.

We do not fear the unknown. We fear what we think we know about the unknown.