If you think you have it bad, trade places with Amy O’Neill for a day
Published: Sunday, July 12, 2009 (New Haven Register)
By Ann DeMatteo
There isn’t anyone I know who loves life more than Amy O’Neill.
And there isn’t anyone I know who struggles more to live than Amy.
At 51, Amy is one of the longest-living survivors of a painful and insidious skin disease, recessive dystrophic epidermolysis bullosa. Amy has had the illness since birth. Because of it, her skin layers don’t bond. Her skin blisters or bleeds with the slightest pressure.
Most of us get up each day, grab a cup of coffee, check our e-mail, shower, dress and go to work, all in a matter of about an hour. But it takes at least three hours for Amy to get ready for the day. A painstakingly precise three hours, in fact.
Amy has to wear bandages around her legs to prevent infection. Each morning, she takes off the bandages from the day before. She takes a shower, then looks for blisters and puts antibiotic ointment on blisters or open areas where there is no skin. Then she has to re-bandage with two types of gauze and Ace bandages.
And she does all this with hands that can barely grasp because they are covered with skin, in the shape of fists.
Amy loves to eat, but all of her meals must be of a pate consistency. She cooks herself, but things like chicken and meat have to be ground up in the food processor.
Anything sharp, crunchy, too hot or too cold can cause blisters and swelling in her mouth, and blistering in her esophagus.
Amy has had 150 surgeries, 50 of them more recently to rid her body of cancerous tumors, something that happens to longtime survivors of EB.
Why am I getting into so much detail about how Amy survives? Because I think Amy O’Neill is one of the most courageous people on Earth. Her will to live is tremendous. Her spirit? Indomitable, invincible, inspirational.
I visited Amy at her cute apartment on Mix Avenue in Hamden the other day. Despite the latest round of difficulties connected to the recent removal of six tumors on her legs and ankle, she remains sweet and upbeat. She giggles when we talk about everyday things: how doting and loving her 10-year-old cat Paula is, how pretty her white and gold curtains are.
“I got them at Wal-Mart at the 50 percent off rack. And then when I brought them to the register they were another 25 percent off. I got them for like $3!”
But she also talked about how her life has been filled with heavy issues lately: tumors that grow from time to time, the question of whether to have more surgeries, the financial difficulties. She asks about my cancer, and I tell her what I had was nothing compared to everything she’s gone through. Tears stream down our cheeks.
Because Amy’s skin has blistered and healed over and over throughout her life, she is now prone to squamous cell cancer. The tumors began in April 2000 and she has had about 50 removed.
“It’s been really hard,” she said. “I had surgery in October, and they took five tumors from my legs. It was a really tough recovery.”
Amy had hoped for a return to normalcy, but then another tumor was discovered.
A picture of St. Padre Pio is on her coffee table, and she says she believes he helped her through the last surgery on Feb. 4. So deep was the tumor that the doctor had to cut into her bone. The ankle lost its support structure, and she had to rely on a walker until a walking boot arrived eight weeks after she got home from recovering at Connecticut Hospice in Branford, where she is a member of the CAN-Support Hospice Home Care program.
“This thing is literally a lifesaver. Waiting took a huge toll on me, not being able to be myself,” she said of the boot.
Amy loves to do many things, but things are not as easy as they used to be, and life itself is exhausting. Yet, she’s not giving up.
“I have my good days and my bad days. When you come down to brass tacks, I really enjoy everything. There is so much out there that is so good. Because of what I’ve been through, it’s taught me a lot about all the good things we have in this life. I tend to focus on the good stuff anyway. I think it’s because of what I’ve been through; it’s taught me to realize that the simple things are what’s important,” Amy said.
How’s that for a positive attitude?
Before I close, I’d like to ask you to please put Amy on your prayer lists, and please consider giving to the Amy O’Neill Fund.
Amy lives on Social Security and is on Medicare and Medicaid. But her daily living expenses, including rent, food and some medical supplies, are paid for by the fund, which will be depleted in six months. It’s administered by Kathleen Evans of Hamden, who can be reached at (203) 248-1513 or at .
For more information about Amy, visit To send a donation, write to Amy O’Neill Fund, P.O. Box 185417, Hamden, 06518. A benefit for Amy and the Multiple Sclerosis Society will be held Oct. 29 in Hamden. Save the date.