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A Drop in the Bucket: Valley native responds to terminal illness
A Dying Wish
Video
A terminally ill Girard woman's bucket list wish is to see others get their wishes granted.
By Sarah Lehr
GIRARD
Diana Johnson has had to take a serious look at her bucket list.
Johnson, 38, has spent much of her adult life in severe pain due to a rare disorder called common variable immune deficiency. This June, her doctor told her that her CVID was terminal.
CVID wipes out the body’s immune system, and Johnson is no longer responding to treatment. A common cold could kill her, and Johnson knows it’s only a matter of time before a cold or the flu or some other routine virus does just that.
Johnson cycled through a range of emotions – denial, bargaining, grief – but she said she’s reached a point where she’s able to feel acceptance, at least most of the time.
“After being sick for 15 years and having them say, ‘OK, this is it, we’ve done everything we can do,’ it was sort of a relief,” Johnson said. “It was like, ‘OK, well, I’m going to go home now. There’s no pain there.’”
But before she goes, Johnson’s only wish is to grant the wishes of others. With the help of family and friends, she’s established the Drop in the Bucket Foundation, a reference to her bucket list.
It’s a small but growing nonprofit that fulfills a niche. Most wish-granting charities focus on children or the elderly, but Drop in the Bucket caters exclusively to adults. To qualify, a recipient has to be a resident of Mahoning, Columbiana or Trumbull county. As of now, the foundation has enough funds to grant two wishes, with a cap of $2,000 each.
Recipients must turn in a doctor’s note, confirming that they are terminally ill or that they have had a life-threatening chronic illness for at least five years. The idea is to grant wishes for people who have trouble doing things by themselves.
“I’ve been there – I’ve been lonely and I’ve been hurting,” Johnson said. “For someone to have reached out to me and said, ‘Hey, why don’t you just have a good time? It’s on us,’ I mean, that would have been spectacular, and I want someone to feel that joy.”
A wish might be as simple as going to a Cleveland Indians game. Johnson can attest to the fact that seemingly small outings can be momentous to someone who is seriously ill.
These days, it’s difficult for Johnson to leave the house. Medication can’t eradicate her pain, which is most severe in her hands, knees and legs. Around the house, she uses a cane, but she needs a wheelchair when she leaves, which is mostly for doctor’s appointments. Johnson’s absolute favorite thing to do is attend fundraisers for Drop in the Bucket, though it frustrates her that she becomes exhausted and has to leave after an hour or so. This Saturday, Drop in the Bucket will sponsor a chili cook-off beginning at 4 p.m. at the VFW Hall on West Liberty Street in Hubbard.
Johnson’s life is unavoidably circumscribed by the risk of infection. She has to stay away from groups of children, and a bus or plane ride literally could kill her. She attracts attention when she goes out, since she has to wear a face mask to protect herself. CVID is not contagious, but people assume the worst.
“I want to tell them, ‘I’m not the risk, it’s you guys,’” she said, laughing.
There are about four days every three weeks in which the pain is less severe and the side effects from Johnson’s treatment subside. On those good days, Johnson’s longtime friends will visit. When she’s not well enough to see people, she cuddles up with Sisco, a Rottweiler-chow mix with a cockeyed ear.
Recently Johnson’s been experiencing problems with her eyes. Doctors aren’t exactly sure why, but they suspect it’s a problem with her cranial nerve. She’s always been an avid reader, so the loss of her vision is a major blow. Still, Johnson takes comfort in audiobooks, and she’ll listen to stories by her favorite authors such as J.R.R. Tolkien, Stephen King, C.S. Lewis and Dean Koontz.
Fifteen years ago, Johnson became mysteriously ill. She spent years shuttling herself from doctor to doctor, only to be told they couldn’t find anything wrong or that it was all in her head – or that she was lying to get pain medicine. Eventually, she became too sick to work, which she said was an even greater blow than the recent realization that she was terminal. She loved her job as a hospital X-ray technician in Memphis, Tenn.
Finally, Johnson’s mother persuaded here to come home to Ohio and visit the Cleveland Clinic. There, she finally got an answer and was relieved to discover there is a name for her illness – but discovered that the disorder is still poorly understood. Many people with CVID suffer for years before being diagnosed, and Johnson jokes that her headstone will read: “I told you I was sick.” CVID affects only one in 25,000 to one in 50,000 people. Symptoms vary wildly, and Johnson’s are unusually severe.
Johnson’s mother, Virginia DeLuco, often tears up and remarks on how strong her daughter is. Johnson says praying helps her to cope and that she’s reached a kind of peace after 15 years of anger about her illness.
“I’m blessed because I know I’m going to die soon,” Johnson said. “Most people don’t know they’re going to die soon. I could do the things I wanted to do. I could say the things I wanted to say.”
Not wanting to burden her mother, Johnson already has made her funeral arrangements and taken out an insurance policy. “Every once in a while, something will make me sad, and it’s OK to be sad,” she said. “But, all in all, I’m very happy.”
Her only desire is to see one Drop in the Bucket wish granted for someone else before going home, as she puts it.