Living with ALS: Seeking Independence and Identity

Driving a specially outfitted van is a nerve-wracking experience but one Hollister Lindley treasures.

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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. Read "Living with ALS" part one "One Day at a Time," part two "Money Issues Need Care as Well," part three "Medical Gains Can't Come Fast Enough" and part four "Learning to Live with Limits." See Lindley's "Life in Pictures."

Hollister Lindley getting into a van
Hollister Lindley getting into a van

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.

When she gets to the side of the van, she clicks her remote for the doors to open. For safety reasons, they can only be opened by her remote. She then clicks the remote again, and the powered lift is deployed from underneath, jutting out about four feet from the side of the van, where it awaits for her to roll her wheelchair onto it.

Things can get interesting here, and more than a little scary.

Hollister can't see the top of her chair or the top of her head when she's backing onto the lift. She is 6 feet tall and now weighs 210 pounds – about 30 pounds more than before ALS. (Eating a lot, she says, has been recommended by her doctors to maintain her strength.)

She is so tall that she has to tilt the back of the chair to avoid hitting her head on the frame of the van as she backs into it. Because she can't see the back of her head or the frame of the van behind her, she needs to have a travelling companion to spot her to make sure she doesn't fall. (Even with a spotter, the experience of using the van can be nerve-wracking. Not so long ago, Hollister was going up the ramp from the carport into her house when the automatic wheel brake on her chair disengaged and she began rolling backward, helpless to do anything except wait for the chair to run into a wall she could not see. There was no lasting damage to the chair or her, at least physically, and the wheelchair mishap has not reoccurred.)

Once Hollister has carefully rolled her wheelchair onto the lift, it begins the job of raising her and the chair, which together weigh some 470 pounds. The device was designed to carry more weight than this, but when Hollister reaches the top of the lift at more than two feet in the air, she and her chair stick out over the side. At this point, she is vulnerable to a mechanical failure, and the possible consequences are daunting.

Once the chair is fully inside the van, Hollister rolls it back into a floor-mounted anchoring station where it locks into place. This all occurs in an empty area of the van behind the front bucket seats and in front of a single bench seat across the rear of the passenger compartment. Hollister still has the leg and arm strength to get out of the chair and walk short distances. So, once she locks the chair in place, she gets out of it and plops herself into the driver's seat.

"As my physical therapist says," she quips, "'As long as you can still fasten and unfasten your seat belt, you've got enough strength in your hands to drive.'"

And drive she does, making sure to scout out a big handicap space at her destination. Then she carefully reverses the entrance sequence to exit the van, locks it and is off in her chair to whatever errands or appointments await.

Hollister doesn't get out in the van that often. A spotter is not always available, so she plans multiple-stop trips when she can. Still, just knowing that the van is there, waiting for her when she needs it, provides invaluable support.

"I've always been fiercely independent," Hollister concludes. "And the thought of losing that is remarkably depressing."

Twitter: @PhilMoeller