Wednesday, February 2, 2011

My day out

Monday, January 31, 2011 10:43:47 PM

We woke on Wednesday morning to a house with no electricity which meant no heat, to Internet, and NO COFFEE. There was a huge ice storm in South-West Ohio last night, leaving everything coated in glass. It is very pretty to look at, but getting out of the house to find heat, Internet and good coffee was pretty tricky.

I had spent Tuesday banished to the house by fear of walking on the ice that fell during Monday night's storm. The prospect of another day inside made me want to pull my remaining hairs out. Fortunately, Adrienne is made of sterner stuff than that and we made it to Kofenya for fresh coffee and Wi-Fi.

The last time I was outside had been Monday when we went to Ikea and Jungle Jim's. I have said many times before that if happiness could be bought, it would be on the shelves of Ikea. If it could be eaten, then it would be found inside Jungle Jim's.

These are both large stores so I decided to take my wheelchair. I seldom use my chair these days, staying on my feet as much as possible. It was strange at first to get into it, but I quickly got over it; I can go fast in my chair. It can be lots of fun, especially on a level floor like at the big furniture store or the gigantic grocery store. The downside is all the TABs (Temporarily Able Bodied people) taller than me, which makes me feel more vulnerable. It is also a reminder of what my traitorous body has done to me. People treat me differently when I am in my chair than when I'm using my cane. When I am using my cane, they are glad to see that I am getting better and it gives us both an excuse to celebrate God's miracles.

However, TABs often feel the over powering urge to grab the chair, not realizing that when I am in it, it is a part of me. This on Monday at Ikea when an employee tried to tie a big yellow bag onto the back, like it was one of the trolley/carts people use to put smaller items in, I blurted out, “ Please stop, I don't like it when people touch my chair.”

I am not shelf to place things on or a cart to carry items in. I would be glad to help, but please ask permission before loading me up or attempting to adapt my chair for those purposes.

I know that people usually try do what they feel is best in each situation and I often try to be gracious, sometimes at the cost of my own peace of mind. After all, they could be showing me the other end of the spectrum. The Ikea employee stopped, apologized and walked away.

Had I not been so flabbergasted at what I had done, I might have explained better that I appreciated his effort, but there was a step missing; the step where he acknowledged me as a person first before transforming me intro a very expensive shopping cart. My companion told me I had been rude and by the look on his face, offensive. She understood how I felt and reassured me she would have reacted the same way.

All I had done was tell him the truth-touching my chair or me is upsetting.

Since then, I decided I feel better for letting him knowhow I felt. And when I say me, I mean my chair, my cane, or whatever adaptive equipment I am using. He was perfectly capable of talking to me first and letting me know what he wanted to do.

I am sure that if I upset the kind gentleman, he has gotten over it by now. I also hope that next time the situation arises, he will stop to ask before acting.

Please feel free to leave your comments below.

Wednesday, February 2, 2011 01:05:32 PM


  1. Michael,

    I understand how you felt and I would have reacted the same way. I don't need a wheelchair (at this point), sometimes use a cane, but walking requires my full attention - and people have come up and grabbed my arm thinking they are being helpful and all they do is terrify me. My response matches the intensity of my fear.

    Recently, family visited during a period where I could only walk very short distances, so I rented a companion wheelchair so I could ride with my brother pushing. Suddenly people assumed that I couldn't hear/speak; the hostess in a restaurant asked him if I could sit at the table or did I need to stay in the wheelchair. That was an eye opening experience!

    Your blog is the third thing I check when I bring my computer up each morning - it has been so helpful. You write very well, able to convey information with well structured sentences and few well chosen words.

    In one post you talked about IG doses. I get 90 gms given over 3 consecutive every 4 weeks. Originally I was getting 90 gms every 5 weeks (started in January 2004) but in spring of 2010 began to lose my ability to walk thus the switch in schedule. From what I've learned over the last 7 years, the doses and schedules are tailored to individual patients and can vary depending on the physcian.

    You had other questions, will respond probably in an email, since like you I am going through a period of fatigue, and just found a brief window to comment.


  2. Michael,

    Re comment about schedule it should read 90 gms over 3 consecutive days!


  3. A few years ago, my wife hurt her ankle. We went shopping at a mall and I got a wheel chair for her; all of a sudden, it was as if she could no longer speak for herself! By the end of the day, I quit responding and just pointed to indicate they should address her directly.

    Once in a restaurant, the hostess walked ahead of, announcing "Wheel chair! Clear the way!" I felt a little bit like a king.

    I just got a copy of my order and my IVIg dose is 0.4 grm/kg once a week.

    Thanks for your comments about my writing, you made my day! :-)


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