No justice for Mary

      

    

                               

                                                       Mary, then

       The months and years that followed those craniotomies were sheer hell. We tried everything we could to get Mary out of that hospital, visiting nursing homes and exploring all options, (even without the constant pushing from hospital social workers and officials). We looked at every way possible to give Mary as normal a life as she could have with those horrific disabilities.

     It was almost impossible.

     “Just take her home,” said the exasperated nurse practitioner one day (they were all toe-ing the exit line now).

     Easier said than done: We all live in apartments with narrower hallways and doors. You can’t fit a wheelchair into our tight spaces. None of us is trained to look after gastric tubes, do transfers, feed someone who eats pureed foods, chokes easily, takes a multitude of medications.

      We all have our own chronic conditions that would make it impossible to be able to move Mary and keep her safe; Bob looks after their small child.

      Impossible. And the constant pressure made us feel hopeless and helpless.

      So we fought, successfully, to get her out with adequate support from various agencies.

       Mary has lived in her own small open-concept apartment for a year now; she has people who help look after her. A nurse visits twice a week to help monitor various conditions. Mary has to pay to be bathed. She pays for her groceries, her own supplies and her exorbitant rent, which leaves her with very little. She is completely unaware of the costs as we, as her guardians, pay the bills for her.

   Her therapies (speech and physio) are private and so must be paid for as well. Two large fund-raisers for Mary in the past 15 months have helped enormously with these costs. Another physiotherapist comes once a week and this is provided by an agency. We are currently looking for more ways to help Mary as best we can, as it has been made clear to us recently there will be no lawsuit.

     

       Yes: It’s true. A complicated and long explanation about timing of treatment that night, causation, standards of care (which need changing, and fast, we believe) and what one expert called “the perfect storm of tragedy.”

     And, we were warned, the hospital would fight – and fight hard. They do that. They have huge, deep pockets, lots of resources (and we don’t) and if we lost we’d end up owing more than Pamela Wallin, Mike Duffy and Mac Harb put together.

    So, legally, the hospital may be off the hook.
    But morally? No. We will always believe that Mary – who was pregnant at the time – did not get the quality of care she deserved. They failed to watch over her after she had fallen. And they weren’t around when she aspirated and arrested.

     This isn’t the United States: things are done differently there when it comes to this sort of thing. Medical lawsuits there stand a better chance.       

    So: A conundrum. What do we do now??

    We carry on. Mary is safe, she is cared for – for now. The road ahead is shrouded in mist – as are the roads of so many others without horrific injuries – and we move on.

       If we don’t move one, we’ll all die from dwelling on the past. There’s Mary’s life, but we have lives, too, and we will always keep hers part of ours. We will ensure her safety, that she is cared for, that she knows she is loved.

      This sounds like a perfect way to end this blog, doesn’t it?

       It is. For me to move on, I have to stop writing about all the pain and suffering and horror we’ve endured over the past four years and a half years. I have to start working on the future. For my sake, for Mary’s sake.

      But I will share a few things we’ve learned about disability.

     Those parking spaces that are marked for the disabled? Yes, those. Last I heard they are for DISABLED people, those who can’t walk or who have debilitating diseases.

     I can’t tell you the number of times we’ve loaded Mary in the car to take her for some therapy or other and watched, time and again, people with disabled stickers who park in those spots, turn off their cars and walk briskly to wherever they are going. No limps, no halts, no hesitation.

     It got to the point where we purposely watched the inhabitants of those vehicles, their ages and their physical ability to walk because we’d find ourselves stuck up in a tight corner, struggling to drag a non-walking Mary, a complete deadweight, alongside the car and to the back of the vehicle where we’d have the wheelchair unloaded.

      There is something very wrong with the system. I’ve seen more able-bodied individuals emerge from handicapped spots than I’ve seen people like Mary. Those disabled stickers are not get-out-of-jail-free cards, they are not for fun. They are for people WHO CAN’T WALK, or whose health is endangered by having to walk distances. But you’d never know it.

     So we grapple with those irritating little things, except they’re not little when you’re in the middle of trying to get to an appointment with Mary.

       Catastrophic disability has a sweeping effect on everyone’s lives – a resounding, whacking impact that exists to this day. Yes, it destroyed Mary’s life, but it changed ours irrevocably, too.

     I’m only stating the facts here, not whining: But this is what happens when someone sustains a brain injury and you’re caught up with the system that caused it, the repercussions and the fall-out: Relationships become strained, resources are a constant worry, you become plagued by a variety of stress-induced ailments. Retirement plans go out the door – along with the money you had put aside to live for the rest of your life.

       Another true fact: Being disabled and having a disabled family member is NOT cheap. Every bit of equipment you buy costs two to five times as much as you might expect. It’s an eye-opener.

      What we didn’t expect – and this really was a shock – was the reaction of some people we regarded as friends. They vanished into thin air; one frankly told us they couldn’t stand to see her the way she is now and ceased coming to visit. Others slipped away into the mists and were never seen again. Worse, those we do see from time to time ignore the situation when we see them, overlooking our fatigue and depression and instead chirpily blathering about the mundane, the silly, the unimportant.

     It’s anything and everything except to acknowledge what has happened.

     Even more shocking was the hostility that greeted us when we dared to discuss with some people – not all – what had happened to Mary. It was as though, by acknowledging what had occurred to our daughter, people feared it might happen to them. Human nature, I guess.

     We felt like we were the plague come back to flourish.

     We turn away from horror. It’s what we do.  We don’t want to see the bodies of tiny children who were killed by chemical weapons in Syria. It’s so unpleasant.

      But it doesn’t make it any less real.

     It was so much worse for Mary. Her friends just stopped coming to see her, except for a couple of times a year – and then maybe. People she went through school and university with, friends she partied with, who were a daily and weekly part of her life.

     Only two have remained loyal and still visit on a regular basis. Yes, people have lives that must go on, but it’s as if she just doesn’t exist anymore. And she does exist. When people come to see her, her face lights up. She was a social animal, a Facebooker, a party lover, a traveller, talk-your-ear-off kind of girl. And now she’s very much alone.

     Still, as one of our friends said – the change is too much, they can’t bear to see her that way after knowing what and who she was, communicating is a real trial, she looks different, sounds different – and so on.

      All true. But reach for that communication board and you’d be surprised what she comes out with. One friend who took sign language classes with her years ago is constantly amazed when she comes by that Mary can still sign with her.

    What Mary has done in the past is still there; she reacts instinctively to so many things. She tries to walk, she reaches out for her coffee, she grabs the newspaper and looks for the very same things she read before this happened. City news, Life news, World news. She is still interested in all those things and still tries her best to read those news stories. Because Mary was  above all, a voracious reader.

     So, these days we’re now down to the core: our family, extended and close, and a few loyal friends. That’s it. No one else wants to know. Ick. Unpleasant. Not nice.

       I’ve come to the conclusion that the world would just like to stick people like Mary away in vaults until they breathe their last. We’ve always been open and accepting about disabilities and trying to help those with disabilities; Mary’s twin has cerebral palsy and we know how cruel people can be. Children are especially nasty, but their parents can be worse.

    Has our society come far with acceptance and equality? Nope.

      I don’t know how many times we’ve struggled with a wheelchair through a door, in a mall, in a store, a parking lot – anywhere and everywhere, in fact – and had to contend with stares and comments we can hear. I’ve asked total strangers if they wanted us to stop so they could take our pictures. I’ve made loud comments about small minds. I can’t seem to help myself. It’s astonishing. I never cease to be amazed at the amount of brute ignorance out there.

      And don’t get me started on people who rush ahead of moms with strollers and people in wheelchairs to get on the only elevators so they don’t have to lug their Guess or Victoria’s Secret bags down an escalator.

     The world in general has an amazing lack of good manners.

      But there are wonderful people, too; folk who fall over themselves to hit the automatic door button for you; who rush ahead to hold open doors; there are store clerks who realize that there is a person still inside Mary and who stop the lineup at the cash to talk to her, include her in the conversation. These people make me want to weep with gratitude.

    They are rare. We need more of these people.

   So, one more preachy thing: Appreciate every minute you have with your children and your grandchildren. Extend that to your spouse or significant other. Love one another and always be there for them.

      Because when it comes down to it, I think that’s pretty much what it’s all about.

     And last: Do not leave someone you love unattended in a hospital. Sleep on the floor if you must, sit in a chair all night long. Nurses are only bound to check on a patient once every four hours.

      Not enough. Not nearly enough.

                           

                                                       Mary, now