Hope leads us to new therapy

     Mary is spending a lot of time these days in a hyperbaric oxygen chamber, ninety minutes per session. Will it help her? One doctor rolled his eyes and shrugged, another said it sure wouldn’t hurt to try.

      This kind of therapy is best used, research indicates, soon after the brain injury, especially an anoxic brain injury. Outcomes vary. While it may aid some injuries – like those people who have cerebral palsy – the outcome of giving the therapy five years after the initial injury is questionable.

      We’ve done some research (scant as it is) and learned that even years after the initial brain injury, vigorous therapies (OT, PT and cognitive), as well as hyperbaric oxygen chamber therapy, may indeed nudge things along.

      So we signed Mary up for 40 treatments. She’s had ten sessions so far, and I can’t tell you how closely we scrutinize her behavior after she’s emerged from her chamber, having endured high levels of oxygen. We really shouldn’t jump to judgment, but who wouldn’t in our situation?

       Have we noticed anything yet? Not really. But the effect is cumulative and it may take a few more weeks to see any changes. She does laugh more readily while we drive her to and from these therapies at a private clinic, but we put that down to our wit and scintillating company. She thought we were pretty weird parents even before this happened.

       And she did try to answer Paul’s Blackberry the other day when he stopped to get gas. He reached into the car and found her looking at it and trying to push the right buttons to answer it. She hasn’t done that before.

      But maybe she was just having a really good day.

      Oh yes – and she has answered our questions a number of times by distinctly saying the right words, clearly, without reaching for her communication board.

      But who knows?

      We have a neighbour – a youngish woman– who suffered a massive brain bleed a few years ago while she was working out. Yes, she was an athlete and in great shape. Now she sit s in a wheelchair, has no balance and was, one day last week, in the chamber opposite Mary.

      Her husband says the therapy has really helped her. So we take some comfort from that. They’re nice people. They didn’t deserve any of this.

      But who does? During this long journey, we have met some very wonderful families, all as baffled, alone and confused as we are, all of them struggling to regain normalcy, mobility, quality of life for their family member. And they are, as we are, paying thousands of dollars for these uncovered therapies, relying on fundraisers and kindness of others to keep things going. Treatment outside of the hospital and OHIP-funded rehab means you’re out of pocket if you want  ­– or need – more than the system says you can have. That’s just the way it is.

      It has been an eye-opener. But it has also been a relief to meet others who are in our situation, watching a daughter, son, wife, husband or child struggle to regain their lives. Some can’t. Some never will. But there’s this circle of hope that keeps us all going.

      There is a Facebook group called Brain Injury Awareness, which I joined a while ago.  If I think I’m having a rotten day, if Paul is worn out and Mary is wailing with frustration, I turn to this site and read the words of those whose family members are suffering similar – or worse – situations. The postings are often made by brain-injured individuals who are at some point on their long road to recovery. I never shut down my computer without feeling a bond with those people I’ve never met. I marvel at their courage, their suffering and their loneliness. Because brain injuries steal the person you love, or the person you are. And very few people you knew prior to the injury want to know what you’ve become, or how much your family may be struggling.

       So you take your solace where you can find it. And you join that circle of hope and keep going, because Mary has no plans to give up any time soon. She just keeps on, pushing her damaged brain, doing everything you ask her to do, trying anything you offer her, struggling and struggling to keep on going.  She gets tired, sure. She gets cranky and irritable, but she’s there. She’s in there. She sees, she hears, she understands.

       And she laughs. I was ranting about something in the back seat the other day. (I do that when I’m exhausted.) Mary sits up front with her dad when we take her to therapies and likes to fiddle with the buttons on the dash. (Before her brain injury, Mary loved nothing more than to jump in her car and drive, anywhere, with anyone, as long as it was an adventure.)

      At some point during my rant, I realized her shoulders were shaking and she was looking at her dad. They were laughing at me like they used to ­– the inside family joke and rolled eyes. “There she goes again.”

      I couldn’t have been happier. It makes it worth carrying on – and ranting – if that’s what it takes.