A mother’s fight against asthma
They never should have told Mary White about the Internet.
They also never should have told her about community meetings and public forums.
The worse thing is that no one should have told Mary White that she has asthma.
Or that each of her three children has the chronic disease.
It’s been trouble ever since, not for White and her children, but for those who want to remain in the dark on a medical problem that has become all too common.
“I’m one of those individuals that needs to know,” says White. “I need to get all the knowledge that is out there and then I have to use that knowledge.”
Use it she has.
“Asthma is a very serious disease,” she said. “At least here in Boston, we have access to proper medical care. But I’ve lived in other parts of the country and they just don’t take it as seriously.”
White says she knows firsthand about taking asthma for granted.
“My cousin fell in love with some guy in South Carolina,” she says. “Now she knew she had asthma. But she thought it would be all right if she just took her inhaler. Sure enough, she gets down there and has a severe attack.”
An ambulance was called, but halfway to the hospital, White’s cousin died.
There’s one thing that White knows for certain — living with asthma is an eternal fight, one that requires knowledge, discipline and courage.
“I was at a parent’s group meeting and a woman stood up and said that her child had gone through five inhalers in two months,” White said. “Now that should have been a red flag that something wasn’t working with the child’s medication. People need to know what their child’s triggers are. If something is wrong, then they should talk with their doctor and work it out. We shouldn’t fear those conversations.”
To say the least, White doesn’t fear talking — or confrontation.
It wasn’t that long ago that White had to battle the folks at the Lenox Street housing project where she had lived for more than a decade.
“I have several respiratory issues as well as my children,” White said. “So I did a lot of research on medications and treatments. But I never felt quite right just giving my children a lot of meds. And there were always little things that would set one of us on an attack. For some reason, I just couldn’t keep it all together.”
Something else was wrong.
White later learned that her apartment was loaded with landmines for those suffering from asthma — roaches, mice, mold and mildew.
She wanted — no, needed — to move to another apartment. For whatever reason, the Boston Housing Authority was unable to provide a new unit. What they did do was scrub her apartment walls with bleach and repaint them. It didn’t take long, but the mold and mildew came back.
Years went by, and White readily admits she became angry.
“They kept telling me that I couldn’t move but I kept telling them that the move was [necessary] because of medical reasons,” White said. “They then would say I would have to go to a hearing. All I wanted was for someone to hear my story.”
That’s when she was labeled a troublemaker.
It was about four years ago, and White had learned — yet again — that the BHA was unable to accommodate her move. “On that very night, my youngest son had really bad attacks,” she explained. “We had to go to Boston Medical Center, and it was awful.” That’s when she determined that she could no longer live in her apartment.
At that point, White said she began the difficult practice of living at different relatives’ and friends’ houses to keep her family free of environmental triggers.
She also kept going to meetings and talking about living with asthma. She met Mayor Thomas M. Menino and told her story. She met health officials at Dimock Community Health Center and told her story. A television reporter came over to her apartment and aired a report.
“Hey, if I have to be a troublemaker for my kids, then I’ll be a troublemaker,” she says. “I’m going to battle for decent housing and proper medical care. I have no problem going to the State House or Dudley Square. If I don’t do anything else, I’m going to educate my friends and family and community.”
White eventually moved to an apartment in Dorchester. “Asthma is a very, very serious disease,” she repeated. “It determines where I live and how I live. It’s more than just about medication.”
That is an understatement. Her baby boy, Verdo, is nine years old. He suffers from frequent nasal infections, bloody noses and respiratory problems. He has trouble sleeping at night.
Her middle child, Billy, is ten years old. He too has severe respiratory problems. And the oldest son, Jonathan, is 20 and attends Bunker Hill Community College. During high school years, Jonathan played football.
He too was on a mission to educate coaches and nurses that students with asthma need access to medication all the time and, more importantly, a greater understanding that they can participate in sports and other extracurricular activities.
“He’s wonderful,” White said of her oldest son. “I’m proud of him for changing the mindset of some of his teachers and coaches.”
As it is now, White says she can’t have candles in her home or air fresheners. She has wooden floors. No carpets. Whenever the pollen count is heavy or one of her children has been playing in fresh cut grass, those clothes must be taken off and washed right away. All shoes are taken off before entering the apartment. Quite naturally, smoking is not allowed.
Opening windows for fresh air is a mixed bag at the White residence. If the pollen count is high, the answer would be no. And, yes, the air conditioner runs every now and then during the winter months.
“I take this thing very seriously,” she said. “If you have seen one of your children gasping for air, you would too.”
By the same token, White said she doesn’t want to stress out her children. “I want them to ride their bikes and swim and play in the park,” she said. “But I know. I know. I just worry.”
And reads. There is a steady supply of inhalers and medicines such as prednisone and antihistamines.
“You know those little pamphlets that come with prescriptions?” she asked. “I read every word. If I don’t understand how this drug will react to another drug, I call the pharmacist. I take notes. I want to learn. I want to keep my mind open. A lot of people are at their wit’s end. But not me. I got some empowerment going on here.” |
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Mary White, pictured with sons, Verdo (l) and BJ, fought to provide decent housing and medical care for her family.
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| Jonathan White taught coaches and teachers how students with asthma can be active and play sports. |
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