Wheels!

The Freedom of Mobility

There is a moment, a moment full of panic and anxiety, when Mikelle’s wheelchair pauses. This chair is well over five years old. It is worn and beaten with many technical issues. When you work with Mikelle you learn to become a sort of amateur handyman, a wheel chair repair expert who learns flying by the seat of their pants. It is just a nuisance for us when the chair short circuits at home and we search and inspect every wire and every lever to see what malfunctioned and what needs to be done to get her running again.

For Mikelle this moment is danger. It means she could be stuck, without control over her movements, for untold hours. It means she can’t ever be alone, even in the apartment, because what if her chair malfunctions?

When the motorized chair needs serious repair Mikelle is forced to use her manual chair. In her manual chair she is unable to get our attention the way she normally would. She can’t roll up and tap us on the shoulder or situate herself to grab something she needs. She becomes completely dependent on us for every movement. She is less assured, less powerful, less Mikelle. Her very behaviour becomes changed. For someone as strong willed and independent as Mikelle, this is scary.

Taylor’s car after her crash Jan, 2017.

It is similar to the feeling of helplessness Taylor had in January when she was involved in a car accident. Her whole world stopped and narrowed to this one personal cataclysmic event. Before she even knew the full damage of the situation her mind became overcrowded with fear, ‘How will I get to work? How will I get anywhere? How can I afford a new car? How can I get a new car quickly enough that it won’t affect my day to day?’ Panic. Anxiety. The loss of transportation is a scary one. Working all over the Denver Metro area, Taylor felt exactly that when she was in an accident due to black ice.

Taylor now feels she can relate in this small way to the feeling Mikelle gets about her chair. Taylor freaked out when she thought her little car was done for good. She can’t imagine the sheer level of fear Mikelle feels when she thinks she won’t even be able to move on her own. The anxiety and panic Mikele feels everyday can be overwhelming. Will her chair give out in some new, unfixable way today? Will a wire come loose and leave her stranded again? It’s happened so many times before and these fears drive her focus.

For the past few months we have been working with the nice folks at NuMotion, Bert and Becky, compiling all the information needed to build Mikelle a new wheelchair. It is a long and arduous process, made longer by the fact that it must be submitted to Medicare and approved before any real work can be done to build the chair. Now that we have completed all of the meetings needed to get an idea of what the chair will be like (ie: moulding it to fit her body, what the chassis will consist of, what color does she want it to be, does she want a head rest or foot rests) we have entered a sort of waiting period.

Mikelle getting fitted at NuMotion.

The waiting presses most on Mikelle who worries daily about the function of chair she is using. Each day she asks us questions about the new chair, when will it arrive, am I still getting a new chair, what day will it come, is it coming soon? We do our best to answer these fears but since the chair is still in its’ approval phase we don’t really know. We hope that by the end of April or May she will have the chair. So we tell her, “You’ll have it before your birthday!” (June 25th). We’ve said it so many times that now she also asks how far away her birthday is, trying to get even a little hint of when this miracle will arrive and make her life better.

A miracle, it really is. For Mikelle a new chair means so many things. It is less frustration on a daily basis, it is independence (to some degree) and it is control over the things around her. We all need to feel a little bit in control. For her sake and for ours, we have our fingers crossed that this chair comes sooner rather than later.

Updates on Mikelle’s chair situation to follow!

About Katherine Carol

Special needs & community expert, speaker, co-author of The Tango of Publishing and Shining Beautiful, with Mikelle Learned, book coach, mom, and community builder.

Leave a Comment