Feature story: Defeating his disability

People know Dave Romano as an integral part of the Kiwanis Fourth of July Parade. Others think of him as a Mustang soccer referee or a Boy Scout leader. Many don’t notice that he has a disability and walks with a limp.

“Sometimes people say, ‘Did you do something to your leg over the weekend?'” said Romano.

If they see him put a handicap placard on his car they’re liable to say: “Romano, throw that thing away!”

“People ask if I had polio,” said Romano, 50, a Danville resident. “I don’t mind.”

Romano gave a presentation to a Boy Scout troop recently for its Disability Awareness Merit Badge, and realized that he should speak out more so others will be comfortable with those who struggle daily with physical challenges. Also he wants to encourage everyone to reach out to those with disabilities – to offer to open a door, or help them out of a car.

“Don’t assume they don’t need – or want – help,” he said.

Romano was a vigorous young man of 21 living in Santa Clara, an active tennis player, when he noticed a nagging ache in his lower back. Finally, two days before Halloween, he went to the doctor, who spotted a tumor next to his vertebrae and sent him to a neurologist.

“He said it was very serious, and the next day I was scheduled for spinal tap,” recalled Romano. “The tumor was blocking my spinal fluid.”

Since the spinal fluid couldn’t circulate, the nerves below the tumor could die. “I could be paralyzed from the waist down.”

He underwent surgery on Halloween day. The good news was that the tumor was benign. The bad news was that it was the size of a hard-boiled egg, and nerves growing inside the tumor had to be cut out.

“When I woke up, my left leg wouldn’t move at all,” he remembered grimly. “They said my left ankle probably was not going to work.”

He was told he would probably be able to walk again but no one could say for sure because there was nerve damage.

“It happened so fast I never had time to think about it,” he said. “I started therapy, and a thousand times a day tried to move it. I started to get some movement back, but in a matter of weeks determined that from the knee down there was nothing.”

The doctor said Romano couldn’t leave the hospital until his gait was correct but the young man was anxious to get back out in the world. The nurses helped him to appear better than he was in front of the doctor.

“They got me up, looking ready to walk, then when he left, I’d crash,” Romano recalled. He was released Thanksgiving Day and moved back in with his parents.

“I had therapy for nine months. I had to learn how to walk again – bars, walkers, crutches. It wasn’t painful but it was a mental trip to deal with it,” he said, noting that he wore a brace for awhile. “The doctor said I would be able to walk to some extent, but would never be able to run again. There was no way to get that back.”

Romano accepted this diagnosis and was grateful for the mobility he had for many years. Then, in about 2005, he decided to see if he could do more. He wanted to go backpacking with his son’s Boy Scout troop, plus he wanted to referee Mustang soccer now that he son had moved up to the next level and every team needed two parents to referee.

“That was one way I could defeat my disability,” he said. “Just because we have something doesn’t mean we have to accept it – I decided to take a stance and see how much I could overcome.”

He hired a personal trainer, and, working with him, was able to take his physical activity to the next level.

“Running was a big thing,” Romano said. “Now I’m able to referee soccer.” Indeed he referees six games each weekend during the season.

“My nerve wires got cut and will never come back,” he said. “My other muscles are trying to compensate. They are probably close to maxing out.”

Now he has 20 percent strength in his left hamstring, with nothing from the knee down. His left hip area has 50 percent strength, and his quad has 60-70 percent.

During the last two years, Romano has gone on 20 backpacking trips with the Scouts, carrying a 25-pound backpack, which he points out, is really balanced on the hips.

“I can hike with that but put 5 pounds in front of me and I’m dead, I can’t carry it,” he said.

“The hardest thing to do is to go uphill,” he added. “My left leg will not lift body weight, I have to use my right leg. I use two trekking poles. I can’t adjust my toes.”

Balance is a huge issue for him, he said. Going through doors is a concern and going up and down steps is a nightmare.

“I used to have to always lead with my right leg for every step,” he said. “I can pull myself up. I use the handrail. My left heel gets caught on the end of a step – I’ve taken a few nasty falls.”

Although he feels pressure on his left leg, he doesn’t feel pain.

“I’ve burnt my leg many times with a hot plate,” he said. “I wouldn’t know if I was stabbed.” Once when he was carrying out the garbage his skin was pierced by a piece of glass but he only noticed it when his wife saw the blood.

Romano also contends with what he refers to as his “hidden disability,” the fact that his digestive system has been dramatically affected.

“My digestive system and bladder do not function normally,” he states simply.

For many years he was embarrassed by his disabilities, he said. He never wore shorts since his left calf has no musculature.

But now he referees in shorts and says his disability is barely noticeable in the black uniform socks. He also speaks about his disabilities to help people understand.

He recommends holding doors open for people with disabilities – don’t assume they don’t need or want help.

“On crutches, doors are a nightmare,” he said. “Door and steps.”

If someone is in a wheelchair, get down to their level and look them in the eye, he suggests.

“Never be afraid to ask if someone needs assistance,” he said. He needs help lifting – he can’t pick up something and walk carrying it, even a 5-gallon plant.

Be aware that those with handicap placards may have a hidden disability. When conditions are slippery, he will always park in spaces for the handicapped although people may look at him askance.

While Romano may not emphasize when people complain about aches and pains, he has tremendous empathy for those with disabilities.

“If I see someone in a walker, I’m the first person to help that person,” he said.

His family often visits their home in Northstar at Tahoe. When his son finished ski school and went on to join a race school, Romano was left with time on his hands.

“One of instructors had asked me why I limp, and he said, ‘I think you can snowboard,'” Romano recalled. One of his biggest fears is injuring his left knee, which would leave him in big trouble. But up for a challenge, he followed the instructor’s directions and ventured out onto the slopes.

“I’m able to snowboard. I had to make adjustments but I’m having fun with it,” he said. “I’m pretty proud of that – I don’t give up.”

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