Saying farewell to my old life… 

One week contains 168 hours, and we sleep approximately 56 hours. If I am lucky, I have an aide here for 6 hours, making 6,360 minutes per week that I sit in these four walls in solitary confinement. I have no one to talk to in this cold isolation of abandonment, although some people say they love it when their family goes on vacation and leaves them at home by themselves. Father time does not stand still for anything, and for that matter, as the clock gets older, it seems to move faster. The only way to get time to slow down is by staring at a clock face, but then you do not get to live your life as I have stared at the clock for too long.

This joyous feeling during the family vacations is because they enjoy the quiet of getting away from the hustle and bustle of family life, even if only briefly. However, although being at home solo for a week is delightful, being alone for over a decade is dreadfully debilitating. If you conjure up the worst-case scenario of being alone in your mind, you still cannot conceive or perceive what it truly feels like to be alone. Therefore, I can not and should never return to the life-threatening darkness of my early MS days.

So as I sit and contemplate this complicated conundrum, I question if there is more to life? I cannot believe this vast nothingness is all there is for me for the rest of my days. So I searched Columbus for activities for me to help ameliorate and eliminate the loneliness and desolation in my heart. People tell me there are many endeavors to be involved in, in town, and I agree there are many things to do in Columbus. 

However, these activities may be plentiful for people without disabilities, but they are scattered far and wide, making them hard to find. In addition, because these activities spread so far, it makes being involved in one difficult, let alone more than one activity, with both weather and lack of transportation a limiting factor. Others have told me I should get a pet because a pet would give unconditional love. However, I do not want a pet; I want a LIFE.

I tried to think of all of my options every day to determine what I could do because, sadly, neither friends nor family visited me regularly. Daily I struggled to conjure up something I could do to eliminate my boredom drenched in loneliness, but there was nothing. There had to be something to keep me from visiting the dark place smeared in my tears of so long ago. So I sat here one day pondering my prolific problem, and in the back of my mind, I heard my mom’s voice. Since retiring, my mom told me she has been busier now than when working, and it kept playing in my memory. I would constantly hear her reminding words while I muddled through my day.

I honestly had nothing to spend my money on while locked in this house during the pandemic, so I got an idea. Because of this lack of required spending, I put every spare dollar I had to pay extra on my house. I am not sure what the reasoning was for this idea, but it was simple to put in motion. When my house payment was due, I made sure I paid my bills, and grocery money was untouched. 90% of the money I had left I added directly to my house payment, leaving me with growing equity for future possibilities. I felt like a squirrel hiding money, except it was on my mortgage and not in my house.

I assembled my ideas and postulated possibilities of a prolonged relocation peregrination. Then, one day I thought about the concept of moving to a place more active, giving me a more enjoyable life. Would it be possible to take the equity in this house and purchase a home in a new state, making it affordable as housing prices continue to rise? So I researched places in Florida where the sun shines more, and there are more activities and more people, simply more. 

The more I thought about it, the more of a reality it became, so I decided I would move in October or November. This delayed departure would allow me to get stronger in the pool and say goodbye to friends. It would also allow me to arrive after the heat of the summer and will enable me to acclimate to the temperatures more slowly.

 I am optimistically terrified of my next adventure!

Living visibly invisible…

I find it annoying when other people are with me in public, but let me explain so you can see exactly what I mean. It is not because I do not want to spend time with people, because I absolutely do. My perfectly perplexing problem is how quickly I become invisible to others around me. I have found that if I do not speak first, I get ignored like last year’s Christmas toys pushed to the back of the closet. Here are a few examples of stories to understand my daunting dilemma.

My dad was with me at the bank as I was trying to authenticate and then close a loan account. Immediately, it started with the banker, who was ignoring me and speaking directly to my dad. Every question the banker asked, my dad looked at me, and I answered the banker like a bad three-person ping-pong match. My attitude was after my dad explained for the third time that this was not his account and he was merely transportation, yet this ping-pong game continued.

I wanted to nip this in the bud before we got further into the conversation, so I quickly spoke up loudly. Since this is my account, I asked the banker to talk to me directly. I explained how I live alone and handle my bills like a big boy, and I would prefer to keep it that way. Although I tried to be polite, I had a slightly sardonic sound in my voice. Surprise and a bitter smile smeared in condescending sympathy shown on her face after my brusque plea. However, I think she finally got my point because she apologized and took me back to a desk to talk one-on-one.

My friend Ted and his wife Amy invited me to dinner to celebrate Amy’s new job. As we waited to be seated, I received the typical looks of pathetic sympathy from several people waiting to be seated. A few kids stared at me, and I simply made funny faces and acted goofy until they laughed, as I have always been able to make kids laugh. Finally, the hostess took us back to our table, where we waited for our server to take our orders. When she arrived, Ted asked if she would take our food and drink orders right away because our group was famished.

The server took out her order pad and began scribbling as Amy gave her dinner desires. She then looked at Ted, and her pen continued to dance across the order pad as he detailed his meal request. The server finally looked back at Ted and asked him what I would like as she nodded her head in my direction. Ted quickly spoke up and told her to ask for herself because I was sitting next to her. When the server looked at me, I promptly spoke loudly in a little kid’s voice while holding a spoon in one hand and a fork in the other. I want pasghetti, I proclaimed emphatically, like the petulant child I was pretending to be. I could see the big smiles on Ted and Amy’s face, making it hard for me to keep a straight face.

The server looked flustered and, with a worried expression, said we do not have spaghetti looking back and forth between Ted and me. I could see that Amy was rifling through her purse because she was trying not to laugh and hiding it the best she could. Although I spoke loudly, it was not loud enough that the whole restaurant could hear me, while only a few tables close to us could listen to my whiny uproar. I soon chanted pasghetti, pasghetti, pasghetti, making the server flustered and teary-eyed. However, I did not want her to get weepier, so I said in a clear voice, “If you do not have spaghetti, I will have the seared salmon in the herb butter sauce.”

Amy and Ted roared with laughter as the server stood dumbfounded, not understanding what had happened. I quickly explained to the server how her actions and assumptions were demeaning and disrespectful. I shared that if she was going to work in a job requiring her to interact with the public, she needed to be more respectful and accept those with disabilities as people. It was vital, I feel, for me to show her assumptions and just how wrong they were. She apologized and explained that she had only been a server for three months and had not experienced interacting with anyone in a wheelchair. Well, now you know, I said.

I could stand on my soapbox and tell hundreds of stories like these, but I have no box of soap, nor can I stand. The truth is when in public, the guy or gal in the wheelchair often gets ignored if not shunned and chagrined, so I try to speak first and loudly to avoid the ignorance of others. I have also experienced those who speak down to me, although someone told me they simply do not know how to act. If that is the case, error on the side of respect, not neglect, disrespect, or any act of superiority. Society is getting a little better at accepting those with disabilities in everyday life, although we still have a long way to go.

Treat everyone, including the disabled, with the same respect as the CEO.