Retreat & Refresh Stroke Camp Staff Volunteer
How do you define caregiving? How do you define compassion? How do you define love?
I see all that and so much more in my friend Joan Leeney … her expressive face, her rich voice, her warm embrace, and the way she always gazed at her husband, Jim, a stroke survivor who also has multiple sclerosis. No matter what, she gave him everything … a sense of normalcy, a community of friends and fellow survivors and caregivers, and all of her physical and emotional strength to make sure the world did not close its doors on this couple despite the challenges.
Joan Leeney opened so many doors and so many hearts and minds because she and Jim were going to enjoy life every day, whether the world was ready or not.
I met Joan and Jim at my very first Stroke Camp in June 2008. I learned so much from just listening to her and observing how she interacted with Jim, who was always in a wheelchair. I can still hear her voice …
On the subject of attitude: “Jim’s personality is so positive. We’ve lived life. Brain injuries of any kind are so different from person to person. How much is MS? How much is stroke? Who knows? We deal with it.”
On the subject of being practical: “We know all the free days at the museums. We do all sorts of free things because we can cancel at the last minute. If he doesn’t feel well, it hasn’t cost me $20 or $40. I didn’t know before he had his stroke that I can take him into the ladies washroom and just say, ‘Man coming in. It’s federal law.’ You think I’m going to take him into the men’s?”
On the subject of not ignoring survivors: “Jim is sitting next to me. It’s really irritates the heck out of me if somebody asks me if he wants something. He’s sitting right there. Ask him! It’s so frustrating. They’re adults, not children, although they’re dependent.”
On the subject of coping with life: “We saw a social worker. We both were depressed. She only recommended that we both get medications. My husband was 62. I said we could do this now. What do we do when he’s 72? She said, ‘Don’t worry, he won’t be alive.’ That so infuriated me! He’ll make it just to spite them!”
And on the subject of conversation: “Friends told me Jim would say more if I’d shut up.”
I loved Joan because she always made everyone around her feel so good and so alive. And that’s what makes her passing on Friday so hard to grasp, so hard to imagine.
Joan never let anything stop her until the very last breath, even when the cancer was destroying her physical body this past year. But it never destroyed her faith and love of life and Jim. She made sure Jim attended Stroke Camp in Elmhurst, IL, in July, even though she had to accompany him in her own wheelchair because of her weakened state, joined by their son and daughter-in-law.
As I fought my tears while taking their family photo — because I knew it would be the last time — she once again used her magic to get a smile out of Jim. He did that for her to create beautiful memories and to make me smile.
Joan is in heaven now, finally free of the earthly pain, dancing with God and all the angels, because she wasn’t afraid to ask for anything. Just one of many reasons I loved her so much.
If you knew Joan, you know what I’m talking about. And if you didn't have the privilege to meet her, I’m sharing this short video of some of my favorite photos I shot of her and her precious Jim … They make me smile and cry, and it's okay to have a lot of both right now.
And you wonder why I find being part of Stroke Camp so vital, and why Stroke Camp is so important to so many lives. I love MY survivors and caregivers for giving me inspiration, love, laughter, lessons … and a new reason to wake up every day.