#19 My ALS Journey—View From a Wheelchair

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My mom was funny. The way she saw the world during her sickness kept us kinda-sorta sane. She was always looking for the teaching moment in every situation. In typical Susan fashion, she might ask, “What’s your view?”

–Tricia

Incident #1 “Van Accessible Parking”
Having arrived at church a few minutes later than usual, we found there were no “Van Accessible” parking spaces available. Until we became the proud owners and users of a handicapped van, neither Cliff nor I realized there was a difference between “Van Accessible” and “Disability” parking spaces. A person with a Disability placard can legally park in either space, but those of us with disability vans cannot park in the regular “Disability” parking spaces, not because it isn’t permissible or legal but because there is no place to let down the wheelchair ramp which allows us to enter or exit our vans safely.

Obviously, parking is always on a first-come, first-serve basis. There is no problem if the “van accessible” space is the only disability space available, the person with a disability should use that parking place, but if a choice is available between “Van Accessible” and “Disability,” it is nice for this to be considered. The problem on Sunday was there were small cars that could have easily parked in the available “Disability” spaces parked in “Van Accessible” spaces. I am really glad they were in church. We went for coffee. Next week we will get there early to grab a parking space.

Incident #2 Trapped in the Restroom
On March 27, 2013, I was trapped in a restaurant restroom by two women trying to sell me a new “medical breakthrough.” Without much tact, they asked me very bluntly, “Why can’t you walk?” Being caught off guard, I answered, but within seconds I regretted my openness to their rudeness. They then gave me literature and their sales spiel for the “miracle cure.” Fortunately, Cliff, who was waiting for me, got worried because I was taking too long and sent the restaurant hostess to check on me. The women were very polite and apologetic when the hostess came to find me.  They backed away from the door and allowed me to roll on my way. The moral is: It is tacky to try and sell miracle cures in restrooms to women in wheelchairs.

Incident #3 ITT Technical Institute’s Graduation
I was honored to be the guest speaker for ITT Technical Institute’s graduation. It was great fun, and the most thrilling part was going up the twenty-foot ramp to get on the stage at the Crest Theater. Sometimes riding a power bike is very exciting.

Incident #4 Visit to the Medical Supply Store
Nobody can say looking at the world from a wheelchair isn’t interesting. Every day there is a new adventure. Resourcefulness and creativity are necessary skills for anyone who is limited physically to meet daily challenges. Cliff and I stopped at a medical supply store on Madison Avenue. I was interested in what types of shower chairs they had available. We waited for a few minutes before we were approached by a salesperson. I asked to see what they had in the store. She directed me to some chairs on display. The problem was the only way to see the chairs was to climb stairs. My response was, “You are kidding, right?” She stated she wasn’t kidding. You have to be able to climb the stairs to see the shower chairs. I don’t think I will be returning to that store.

Incident # 5 – 9 “Teaching Love and Logic”
A thrill for me is to teach “Parenting with Love and Logic.” For five weeks, I will be teaching this awesome parenting class to a group of 25 young parents. They come eagerly wanting to learn how to raise responsible kids successfully. Since working the room is a technique I like to use to connect with an audience, I have the challenge of doing it from my power bike. This means maneuvering between tables and chairs and over cords. One of the best things about my new bike, in addition to moving backward, forwards, and tilting, I can raise it 8 inches. From that height, I can see the folks in the back of the room. I would rather be walking around the room, but if this is the way I get to teach, I will do it from the bike.

Incident #10 “Second Saturday Bible Study – Treat and Trial”
Teaching Spiritual Disciplines has been a treat and trial for me. A group of 15 women has met once a month in my home for the past three months. The treat, I love these women, and the topic is  Trial: Getting My Spiritual Life Back on Track. I chose the topic because I have struggled spiritually this past year, not with my faith but with my faithfulness. Experiencing and practicing these disciplines will help me to get back on track. I have been a little distracted dealing with my ALS. It is well past time to get my act together. Thank you, Lord, for being patient with me as I work through this trial with you. I am a thankful woman.

Stay tuned for more thoughts on View from a Wheelchair.

–Susan

love and logic

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