Mother With Ms Decides To Make A Difference

Martha Meili tried to hide her multiple sclerosis for five years.

If the 36-year-old mother of four suddenly had trouble walking, she would stop. She didn’t want anyone to notice her difficulty.

The most important thing, to her, was that no one outside the immediate family found out she had MS

Now, she’s telling the world.

When the Inland Northwest Chapter of the Multiple Sclerosis Society contacted her about becoming a sponsor of the annual MS Walk, she agreed. But she decided to do it right or not at all.

Organizers estimate the Fairwood Park resident has been responsible for getting more than 100 people to sign up - about a tenth of the total participants registered for Sunday’s walk.

“If I don’t do anything and there is a cure, am I going to be someone who says, ‘Oops, somebody else did it for me?”’ she said. “I mean, I’ve got it, so why am I having everyone else do it for me?”

Meili wrote a letter telling her story, asking people to join the walk team sponsored by her family’s business, Meili Manufacturing at N3511 Market. She sent 200 letters out.

“In the letter, I said to pass it along,” she said. “Amazingly enough, people are copying them and sending them off.”

Now, people are even doing the MS walks in Portland and Seattle because of her letter.

Getting to the point where she felt comfortable with others knowing she had MS wasn’t easy.

“This was really hard for me to do - to open up,” she said. “If you see somebody (who is disabled), sometimes you think that they don’t want to talk to you, or that there’s something wrong with their brain also. I didn’t want people to think of me like that. I’m a whole person.”

To avoid that, she devised all sorts of ways to conceal her symptoms when they acted up.

“When I walked down a hall, I would walk right next to it and hold it,” she said. “If I was walking with my kids, I would hold the back of their neck and use them as a cane.”

It worked. No one noticed.

“People just thought we were in trouble,” said her 8-year-old son, Ron.

It was her children who initiated her first experience as an MS Walk participant.

Two years ago, they saw a commercial for the walk on television. The youngsters asked their father, Russ, if they could register. Meili also participated but didn’t disclose she had the disease to organizers.

It was a secret that came out nonetheless.

“I tried to do it, and Sissy (her daughter) was in a stroller,” she said.

“I walked and walked, but we were so far back from everybody else. Finally, my mom said, ‘Why don’t you get into the stroller?’ I said ‘No.’

“Finally, I got into it, and they pushed me until a van picked me up about a mile down the road. I felt badly, because I couldn’t even finish the walk.”

When the fact she had MS became better-known, Meili began second-guessing people’s reactions to her.

“When people would come up and say, ‘How are you?’ I’d be wondering if they wanted to know how I was, or how the MS was. I never knew where I stood.”

Finally, she told everyone how she felt in her letter. Now, she’s adjusting to the fact that her MS is no longer a secret.

For walk organizers, the disclosing of Meili’s story came at just the right time.

“She’s come more to grips with the disease,” said Chris Polello, development director of the MS Society of Spokane.

“Now, she wants to be involved. … Her story touched the hearts of everyone she contacted. People just kind of rally around her.”

MEMO: For more information about the MS Walk, call 482-2022 or 482-7392.

This sidebar ran with story; WOMAN COMING TO TERMS WITH ‘COMPANION’ The following is an excerpt from Martha Meili’s letter asking people to join the MS Walk: “I remember Mom telling me about a man who came into the gift shop at the hospital and being very proud, proud of the fact that he had AIDS. “I’m not proud. I’m not proud nor am I excited to even admit that I have a companion named multiple sclerosis. “For five years I’ve tried to hide my companion. This year, though I try, I’m not hiding it too well. I’ve decided it’s not my fault! But it will be my fault if I don’t do something to try and help myself. “Maybe it’s time I, too, become proud and quit trying to hide my companion and quit being embarrassed by my companion. It’s time I, too, as they say, ‘come out of the closet.”’