Living with ALS: Seeking Independence and Identity

This is the fifth installment in a series about Hollister  Lindley, a 62-year-old resident of Richmond, Va., and how she is  changing the way she lives after being diagnosed with amyotrophic  lateral sclerosis, a fatal condition also known as Lou Gehrig’s disease. 

Hollister  Lindley needs a 260-pound motorized wheelchair to get around these  days. When she wants to run an errand, she wheels the chair down a  series of ramps installed in her home and goes outside into a covered  carport. There, she carefully maneuvers the chair opposite a large van  that has been specially converted for her needs.

Driving  the tan Ford van is an ordeal from the standpoint of someone used to  just hopping into her car and hitting the road. But for Hollister,  things are not easy these days, and are only getting harder. That’s what  ALS does, as a disease that progressively destroys the body’s muscles  and all the functions they control. It’s been more than five years since  Hollister began dropping utensils and realized something was not quite  right. It took another three years to confirm that she has ALS. This  fall will mark the second anniversary of that diagnosis – a milestone  many ALS victims never reach.

Hollister knows  she is, to some extent, beating these odds every day. Hard doesn’t begin  to describe the things she will endure to continue living a life with  at least some remnants of control and meaning.

“It  is the only chance at a feeling of normalcy,” she says, referring to  the van. “It is the only chance at a feeling of self-determination, or  independence. It’s not like I can call a cab.”

Her  van listed for $30,000, but the price tag – not covered by insurance –  soared to nearly $80,000 after its floor was adjusted and a powered lift  that tucks underneath was installed. Everything is powered by remote  control, allowing Hollister to open the van, activate its lift and roll  her wheelchair inside.

Her husband, Rich Kern,  has installed yellow reflective tape in the carport to help Hollister  park the vehicle in just the right spot and to position her wheelchair  so it can roll into the van in the precise position. A mirror installed  on a carport wall opposite the van’s side doors helps her keep the chair  correctly aligned in relationship to the van.

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