Disappearing ourselves
Finally, at 52, Eleen has secured funding for Gabe that allows her to flourish as a professional artist and part-time instructor at the Toronto School of Art. And each day, Gabe explores his passions such as riding the subway with support workers. But Eleen admits organizing Gabe’s life is another full-time job, involving hiring, training and supervising seven or eight support workers. “It’s like being an unpaid manager of a business.”
Multi-talented, Eleen has also created a niche doing freelance home repairs. Recently, she constructed a unique way of living with her son. By installing an extra door in their house, she created her own entrance and two separate living spaces. “Gabe considers this his own apartment and loves it. I’m getting a taste of a different kind of relationship with him.” And for the first time, Eleen has a private space to relax. When a worker is there, she can shut the door, brew tea on her hot plate and read on her own couch.
That time is precious. Some nights and weekends, Eleen opens the door and takes her “shift” supervising her son, sometimes involving all-nighters in the ER dealing with Gabe’s seizures. And she’s perpetually on call. “I always have curfew — 5 or 11 p.m. I need out of that.”
Finding her own way
She’s getting there. By extreme planning a year in advance, Eleen “sinks her teeth” into painting at artist residencies — most recently in the Arctic. “I got a glimpse of what it would be like to have that autonomy all the time. I felt back in my skin.”
She paints a picture of their future: “We’re both ready for more freedom. I’m bracing myself to lobby the government again, because 31 years as a caregiver is enough for me.” She plans to meet with Gabe’s informal microboard (see "Where to turn"), a support circle consisting of a volunteer advocate, Eleen’s mom, and close friends. “[A formal] microboard will do what I’ve been doing — advocacy, payroll, day-to-day organizing. I’d like this in place before I die so that I can rest easy that this will go on and Gabe won’t end up in an institution.
“We’ve been through so much together,” she says. “Our relationship deepens all the time. He’s so vulnerable, and I’ve stood by him and it’s brought me into my humanity.” With her artist’s eloquence, Eleen sums up what I’ve heard from so many women: Our kids transform our lives profoundly. How can we do the best for them without disappearing ourselves?
