Two Lawrence residents want to share what they’ve learned since becoming wheelchair users.
Ron Miller was in a hurry. A custodian for a small church in Council Bluffs, Iowa, Miller had to polish the upstairs floor before his shift was over.
Normally, Miller would have had another custodian there to help him. But that man had left early. So Miller was on his own. He eyed the floor polisher, a heavy-duty machine that by all accounts was a two-man lift. Miller, who was 19 at the time, determined that he could carry it by himself. He got a good grip and hoisted the polisher up a full flight of stairs.
Maybe the pain had begun before he got to the top. Whether it had or not, by the time Miller set the machine down, the nerves in his lower back were aching something awful. He hobbled through his shift thinking the pain, like most pain that afflicts the young, would go away.
The pain stayed — for years. And gradually it grew worse, prompting Miller to see specialists and undergo surgery. But surgery or no, the pain would become a constant, a hovering presence that hung to him no matter what he was doing. Standing would hurt, so he would sit. He would feel relief for a moment. But the pain would work its way up his spine again, and he would have to stand to escape it. That cycle repeated itself endlessly, until a few months ago, when standing for long became too much and walking far became excruciating. Miller had to get a wheelchair.
A new support group for people who use wheelchairs meets monthly at Independence Inc., 2001 Haskell Ave.
Meetings are at 3 p.m. on the first Friday of each month, except April, when the group will meet on the second Friday.
Though Miller had been living with a disability for much of his life, transitioning to using a wheelchair was not something he was prepared to do. It required time, attention and money. Lots of money. Miller priced wheelchairs online, and unable to wait for Medicare’s approval, he bought a used one on Craigslist. Then he had to buy a ramp, a lift and a van without a driver’s seat.
Meanwhile, Suzi Jordan was across town fighting to transform Lawrence into a place where wheelchair users could live happily, which meant working with restaurant owners on improving accessibility.
“Lawrence is ahead of some places, but there’s still a lot of work to be done,” says Jordan, who is a member of an advocacy board at Independence Inc., 2001 Haskell Ave.
Jordan also uses a wheelchair. She has been immobile for nearly seven years. Her disability took root after a knee-surgery that was intended to relieve pain caused from osteoarthritis. The surgery had the adverse effect, causing the neurons in her leg to go haywire and issue messages of pain to her brain constantly.
Jordan, like Miller, had to make the transition from walking to using a wheelchair. It was not easy. Before she was wheelchair-bound, she did water aerobics and Jane Fonda exercises, and danced. The emotional toll from being stripped of activities key to her identity was immense. Once an active school teacher and local artist, she began to uncharacteristically hunker down at home.
The urge to stay isolated was tempting. She felt so alone. But then one night she went to a show at the Lied Center with her husband, and she realized that she was one among many. She was seated next to Miller, and the two launched a conversation about their disabilities. Just talking with someone who understood the struggle felt gratifying. So they decided to give that feeling to someone else: They pledged to start a support group for wheelchair users.
“The doctors gave us no information” when they learned they could not walk, said Miller. “The public is educating the medical world, which is why this group is so important.”
While Miller and Jordan have had to learn everything on their own — where to buy products, where to get funding and what places to go to for help — they want to shorten the struggle for others by passing on their collective knowledge. And they want to show others that the negative emotions resulting from losing mobility are not something they have to carry alone.
“It has taken me forever to develop resources,” Jordan said. “We want to give a forum for any kind of practical or personal problems.”