Lasting love and disability – a Valentine story
Francine Desrosiers and Jean Emond have been together for nearly 30 years. But Francine almost decided not to go out with Jean, because she was afraid to tell him she had facioscapulohumeral dystrophy. Her condition wasn’t apparent and she feared he wouldn’t want to pursue the relationship if he knew her secret.
But one day, while they were out at La Ronde amusement park, Francine stumbled and fell flat on her face. When that happened, she finally mustered up the courage to tell Jean about her condition over the phone. Jean was surprised, but never once thought of backing out of the relationship. A few hours later, he showed up at Francine’s door with a bouquet of flowers.
Since then, and despite the progression of Francine’s illness, they have supported each other and built a good life together. When the question of whether or not to have children came up, they both thought about it long and hard. They both loved children, but the fear of passing on the disease made them decide not to have any. Jean says he has no regrets; he has bonded with his nieces and nephews and feels completely fulfilled. It’s a little different for Francine. She does have some regrets, especially when she sees children… but it’s all a matter of acceptance.
Jean says he loves Francine deeply. He appreciates her patience, her kindness, her sense of humour and her understanding. He likes spending time with her and talking with her. He accepts her as she is. Francine also professes her deep love for Jean. She’s comfortable with him; he’s attentive, funny and patient, especially with an illness that keeps progressing and that brings a lot of changes in their lives.
The dystrophy can sometimes make their lives difficult. For several years now, Jean has observed the changes in Francine – the loss of certain functions. For example, a few years ago she could walk but now must use an electric wheelchair. Several adaptive devices are now also part of their daily life. Jean says they find a way to cope…that’s life. They’d like to travel and go to the restaurant more often, and be involved in more social activities, but fully accessible restaurants or museums aren’t that easy to find.
How have they managed to stay together all these years? Communication, openness, listening, love. Respect for one another and for each other’s differences. Being able to make compromises and accept the good…as well as the bad.
The “S” word
Have you ever seen a couple where one or both parties were disabled, and wondered about their relationship, and about their sex lives? Do you have a neuromuscular disorder and wonder how it will affect your sexuality and future prospects of love and relationships?
It’s normal to have these questions, says Kate McBride, RN, Coordinator of the Sexual Health Rehab Service at GF Strong Rehab Centre in Vancouver, who was one of the keynote speakers at our Empowerment and Action conference.
McBride shared some common myths people have about disability and sexuality:
- people with disabilities are not interested in sex
- sex means intercourse
- sex is always spontaneous, with no planning
- people with disabilities are not desirable
- good sex requires orgasm
- people with chronic illness should not become parents
The fact is that sexual health is a major aspect of wellbeing that affects people of all ages and stages of their lives. There is no right or wrong way to experience sex, as long as it’s safe and consensual. You define your own sexuality.
pleasureABLE: A sexual device manual for persons with disabilities (link to open in new window)