Access Bus Offers Opportunity, but Deflates the Spirit

When Steve goes to a doctor's appointment, he must travel in his wheelchair. We transport him from bed to wheelchair via Hoyer Lift. Then, to go anywhere, he must travel in a wheelchair van - specially equipped to secure the wheelchair to the floor and to the sides of the van. So far, he has traveled in commercial vans - with each one-way trip costing $35 out of pocket.

The Kidney Center suggested we look into Access Bus - which would cost only $1 per trip, and allow a caregiver to travel at no charge. Access is a Seattle Metro bus service for the disabled. Essentially, as long as you qualify, a truncated Access Bus comes to your home, picks you up, and delivers you to your destination. Plus, the busses are equipped with lifts and tracks in the floor to clamp a wheelchair safely into place.

To initiate Access Bus service, we had to take Steve to Harborview Medical Center for an evaluation. I assumed it was to prove he was disabled "enough," but the staff expained that it was also to ensure that a person could ride the bus safely.

So yesterday, we had the Access Bus evaluation. At no charge, the Access Bus transported us to and from Harborview. The first driver was very kind and professional, and even a little early. We made one stop on the way to Harborview - to pick up a notably slender woman who walked to the bus with the aid of a cane. She looked so fragile; a stiff gust would have derailed her little body. The driver carefully assisted her on board, and helped her step off the bus at her First Hill destination.

Steve became nauseated during the bumpy ride, and the driver pulled over to find a plastic bag for him just in case. I noticed a small first aid kit and "Bodily Fluids Clean-up" kit duct-taped to the inside of the bus.

At Harborview, the evaluation was brief. Steve's disabilities are painfully obvious. The therapist measured and weighed Steve in the wheelchair. He was well under the 600 pound weight limit, but it certainly seemed to us that that information would have been available without the physical visit.

The return trip was treacherous. Leaving a full hour after the scheduled time, we made stops for two other passengers before arriving home an hour-and-a-half later. The entire evaluation journey - start to finish - took five hours!

The duration is significant, as Steve cannot sit in the wheelchair that long without considerable tailbone pain. Moreover, the return driver was befuddled - ignoring not only the GPS system, but also directions from passengers. As a result, the journey consisted of a serpentine Twilight Zone ride of twists and turns, punctuated by jarring speed bumps. It took far longer than it should have. I watched Steve - pale and weak - working to support his nodding head with arms that don't work well. It was terribly disheartening for me.

We were so relieved to get home. Relieved and exhausted. I got Steve to bed immediately, and he slept through three episodes of Six Feet Under.

The take-home messages here?

• We're grateful that Access exists, and can easily appreciate its benefits.
• As in any service, service providers will vary in qualifications - and in kindness.
• Asking passengers for directions is reasonable - and it's respectful.
• The people who can use the Access Bus service are more functional than many; they can, after all, call for reservations and negotiate the whole process.

But there's no doubt about it: the experience was just one more reminder that our lives have become even more marginialized by End Stage Renal Disease and the unexpected nightmare of Critical Illness Polyneuropathy.

Steve's take on the experience? "It offers the difference between some life and no life."

I came home feeling greatly respectful of the folks who have the gumption to get out in the world in spite of the ironic obstacles afforded by Access!

Take care,
Linda Gromko, MD