By David Shapiro

Saturday, August 23, 1997


On being stubborn
about a disability

ONE of the hardest things about being disabled is learning to accept help when you need it.

I've had multiple sclerosis for 10 years. It has sapped my legs of strength and coordination. My balance is shot. Walking even short distances is a grind sometimes.

I probably should get some wheels under me, but I'm a stubborn SOB. I don't give in to adversity and I hate drawing attention to my disability. I appreciate the concern of old friends, but their mournful looks when they see me hobbling with a cane are enough to make a guy worry that he's worse off than he thinks.

I still hold my own quite well in most areas of my life. MS is a disease known for its remissions and several new drugs show promise, so there's always the hope that it'll get better.

Still, a couple of recent incidents cast doubt on the virtue of my stubbornness.

In the first case, a co-worker said something that made me laugh. The force of the laugh knocked me off balance and I started to fall. My cane was on the wrong side and of no use. I reached for a pillar to brace myself but missed it and landed loudly on my rear end.

People heard the noise and rushed to the scene. Seeing me on the floor, they didn't know if I had suffered a heart attack, a seizure or what. I tried to calmly assure everybody that I was OK.

As I crawled around the floor in search of my dignity and something I could grab to pull myself back up, I angrily muttered to myself, "Well, genius, you didn't want to draw attention to your disability by using a wheelchair or scooter. How do you like drawing attention to your disability instead by falling flat on your butt in the middle of the newsroom?"

In the second case, I was invited to a reception for a departing employee. The home was high on a ridge above Waialae and I was afraid I wouldn't be able to climb the hills. I had just finished an aquatherapy session in a well-heated pool and my legs were rubber bands. But I had made a commitment to go and decided to give it a try.

I survived the hike up a street sloped like a winter swell at Makaha. I made it up the long driveway. Just as I was about to congratulate myself, I ran into a steep stairway to the house. No way.

I pondered whether to slink back to my car and disappear or swallow my pride and ask for help. I had faced a similar choice once before. I was invited to a major event at Washington Place and looked forward to it. But the scene was mobbed and I couldn't find parking within my walking range. I'm sure somebody would have gladly helped if I had asked, but pride wouldn't allow it. I turned around and drove home feeling like a moron.

THIS time I made the smarter choice and accepted the host's help as he led me to a more level entrance around the back of the house. I accepted his offer of a shoulder for support along the way. I accepted the help of people who brought me food and drink so I wouldn't have to stumble around a crowded room. I accepted questions about my health without taking offense.

I was rewarded with a good time and a breathtaking view of the sunset over Diamond Head.

I'll give the remission process, aquatherapy and wonder drugs a little more time before I put myself on wheels. But I'm done with the stubborn pride. To all who have helped me up when I was down, thank you. If I can ever do the same for you, I'll be there.



David Shapiro is managing editor of the Star-Bulletin.
He can be reached by e-mail at editor@starbulletin.com.
Volcanic Ash runs every Saturday in the Star-Bulletin.

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