Register Monday | June 17 | 2019

Escaping Your Disease

Jessica freefalls to forget

My eighteen-year-old sister Jessica has been on over thirty-five airplanes and jumped out of all of them.

Without wings, she dives back towards the ground at 200 km/h. She says it’s a way to be by herself with no one else around. She passes through one cloud after the other—clouds not unlike the ones that have been blurring her vision since the age of four.

Jessica has uveitis derived from chronic juvenile arthritis. Her cornea is covered by a cataract-like film that affects her vision and impedes her pupil from dilating. This subsequently limits her chances to accomplish some the things she’s always wanted to do, such as flying a plane, joining the police force or, hell, both.

In the last fourteen years, Jess has seen more ophthalmologists than most people see in a lifetime. From drops, creams, injections, pills, she has taken enough medication to fill a drug store. But hey, she’s a champion. She’s got a good attitude—and she skydives for relief.

My sister lets gravity take over the nausea inflicted by her latest medication, methotrexate, a drug usually given to cancer patients. She forgets that her skin is dryer than it used to be, that her face is suddenly plagued with acne, that her joints are stiff and grey, that she’s lost handfuls of hair over the past few years and that a minor cut will take weeks, if not months, to heal. Forget the prednisone, prednisolone, homatropine, humira and timolol XE. All she does is jump and let go for a matter of seconds.

The medication is one thing, but knowing that she’ll never achieve her dream of becoming a pilot is even more difficult. When she applied to the air force, the officer who interviewed her was direct. “You’ll have to face the fact that you’ll never be a pilot,” he said. He then offered her a spot in artillery. She declined. Now, she hopes that her studies and credentials alone will be enough for police to hire her for psychology and criminology jobs.

Jess isn’t unlike other people with debilitating illnesses. Her life is not at stake, and her health is so closely monitored that the chances of her losing her sight are slim to none. Nevertheless, finding something to hold on to, whether it may be an adrenaline boost or creative focus, is a necessary salve for the soul.

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Recreational therapists say their job is to allow people with mental, physical, emotional and social illnesses to be an integral part of society. They help people enjoy themselves in the face of harsh treatments, chronic conditions and other health problems.

Many Canadian hospitals have integrated music therapy into their programs as a way to get in touch with people’s creative and emotional sides. Other institutions use physical activity, art or literature as a way of letting patients escape reality. But for some whose lives have been changed by illness, the best therapy is that which they pursue on their own.

Joan Helson, a singer-songwriter from Nova Scotia, says her guitar got her through much more than a few sets after years of treatment, tests, chemotherapy and surgeries.

“It's funny, because my music during the whole treatment process really had nothing to do with cancer or my illness,” said Helson, who was diagnosed with breast cancer in 2008. “I found my music kept me from swimming in the downsides of the illness. I never wrote a song about being sick. I found I had a lot more feelings about being thankful and about good things than about the crappy stuff when I would pick up my guitar.”

Helson was found out she had breast cancer on her forty-fifth birthday. Since then, she’s undergone a lumpectomy, mastectomy and exploratory surgery. Recently, she also had reconstructive surgery to repair some of the damage prior surgeries had done to her chest.

“I guess cancer has given and taken things away from me. I mean, I lost a lot of feeling in my feet permanently from chemo,” said Helson. “But every day when I put my feet on the floor in the morning I am reminded not to take the day for granted. I am sad that I am not who I was, but thankful to be here to explore who I am. I know a lot of people who wallow in their illness,” she continued. “They let it define them. I have always said that this disease may cause me to redefine my life, but I will not be defined by cancer.”

To this day, Helson struggles to find the energy she once had. Not unlike my sister’s medication, which is much lower in strength and dosage, Helson’s treatments have also caused side effects and discomfort.

But some side effects could have an upside. Shortly after beginning her Herceptin treatment, an antibody used to treat people with breast cancer, Helson woke up with a song in her head—something which never happened before taking that medication. “It was the first time ever that I have actually remembered a song from my dream,” she said. She recorded the song and uploaded it to YouTube in one go, without editing. The tune may be a by-product of cancer treatment, but when she sings, Helson emotes positivity and hope.

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Whether it’s skydiving or strumming a guitar, concentrating on your passion can be a way of sidelining the insecurities brought on by health issues.

Stephanie Wood, a recreational therapist in Halifax, said the benefits of these kinds of activities have long been overlooked, thanks to social mores that say fun and games are only for downtime. But for my sister and Helson, coping with their treatment didn’t require a team of professionals. By submerging themselves in something they cherish, they have both managed to overcome a great deal of pain and depression.

“We’re not the leisure experts,” said Wood of her profession. “The patients are the experts in their own health and experience.”

In leisure therapy, the concept of “flow” is often described as when someone is so focused on a particular moment, time seems to fly by. Wood explained that, rather than encouraging people to forget about their health issues, recreation and leisure can help people to experience that feeling—to, in a sense, “escape.”

“Escaping is different to different people,” she said. “It can be long-term or short-term escapes. It’s being able to let go and being in the moment—almost like the opposite of [the usual definition of] escape. Not worrying about anything else that’s going on around. Just letting energies happen.”

Parachutes and guitars may not really cure diseases. But doing something that you love is one of the best ways to remind yourself that life can be beautiful.

(Follow Mick on Twitter.)

Related on maisonneuve.org:

Cynthia Brouse's Plyanna Moments
On the Wing
A Brief History of my Breasts

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