Tag: disability

I Love You Both

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Today marks five years. Oddly, it’s the day I wanted to fast-forward to five years ago when I thought by now normal would have been achieved and the day-to-day would be far behind. Wait and see, I said then. Everything will be all better in five years. This will just be a blip in the radar.

The blip turned into an all-consuming monsoon; the sprint turned into a marathon; the journey of hope, love, and faith often turned into depression and frustration and a sadness that no sense of humor could ever completely cover.

Five years later, I hide it well. I laugh a lot. My closest friends and some family members sometimes forget I struggle. Sometimes I even forget I struggle. Everything has become so normal. This is our life now. The lack of normal has become normal.

Somewhere along the way I guess I somehow came to terms of some sort with all of it. The tears don’t come as easily any more. But I’ve never dealt with the grief, and I am terrified of that. Just as I never dealt with the grief of losing my dad three years later. At some point it all may crush me. But we have to move forward, I guess. We have no choice than to move forward. For his sake. So the sadness is swept under the rug inside my head and I only concentrate on today.

I love the boy I have and the boy I had fades into the distance.

Sometimes I forget how deep his voice was or how strong his arms were or how much he helped me. Sometimes I forget the goofy things he did to make me laugh so hard my stomach hurt. Sometimes I forget what a good son he was and a good friend to his friends. Sometimes I forget life even existed before his head hit the stone wall.

We were a team then, but we are a stronger team now. Don’t tell Dad, he’d plead with me then over a damaged car part or a broken computer or another waterlogged phone. Only if you don’t tell him I hit the garage again, I’d answer. He never tattled on his sisters, but he couldn’t lie to me when I’d ask about something he had done, easily getting himself into trouble for every first-time infraction. We talk now about the time he and his best friend chopped down a tree in the state park. Or set off about 30 fireworks at once in a wheel barrow in our backyard. But all those events are just stories now, stories from another time, with another boy.

I’m ok with that, I thought. I’m okay because I have a new son, a new purpose now. I’m okay I thought, until yesterday when my daughter sent me a video she had compiled a few years back of a few years further back and I saw him today as he was then and the pain came fast….searing pain…. and I saw him and I missed the him that was him, and the now broken pieces of my heart, only lightly glued back together, came crashing down in a heap.

It’s impossible to explain how  a mother’s love can separate into two for the same person….he’s here but he’s not, but he is, and I’m so grateful, and so love him, but he’s no longer here and I miss who he was and who he could have become….at the same time. I miss the dreams I had for him and the future I had for myself. Sometimes it makes no sense to me….my own brain can’t handle it. Sometimes it just wears me down and out.

I’m tired. I’m alone. I battle by myself. I am angry and I am bitter. I don’t trust most of the medical profession, especially in this area we live, because throughout the last five years they didn’t trust me. So many hurt us more than helped us, making us travel two to three hours away to fix what they erred. Case workers and managers have been a step up from worthless in our situation because no one ever talked to us about finding help or what is available or where we could go for advice or assistance. We had to find our own way, traveling down streets and roads without any sort of GPS, just to understand what help is available for someone with a brain injury, how to fight insurance, and that, yes, progress does continue past the two year mark, well into the five year mark. This part of the journey, the advocating and the fighting and the learning the system, has been even more exhausting than the caregiving. We should have had help with this.

The boy I have today is sweet and loving and kind and funny and makes everyone love him with all their heart, the first time they meet him. I am beyond grateful for him. You were touched by angels, I tell him. He lights up my world.

With his first, “Hello. What’s your name?” he creates smiles no matter where we are. He’s intelligent. He can figure things out when he’s not too tired or foggy. He loves people; he loves visitors; he still loves the friends who no longer show up. I love this boy more than I loved the first. I have to. I convince myself he will be okay when I’m gone. I convince myself that no one will ever make fun of him, or take advantage of him, or abuse him in any way. I have to. But in today’s environment I’m no longer sure.

In the past five years, I have learned that it’s okay to cry, it’s okay to laugh, it’s okay to hide my emotions or wear them on my sleeve. I have learned to be more honest in my thoughts and my feelings. I have learned how to dig deep to find my center, my core, my strength and hold on tight. I have learned I can love the same person, who isn’t the same person, one a memory, one in the present, with different types of unconditional love. I have learned that love really does heal and mother usually always knows best.

I have learned that the strongest weapon in any arsenal is the gift or the power of love. 

Thank you for being such a huge part of Damon’s Army for the past five years. With your help, we will move through the next five. In five more years, maybe this will all have been just a blip in the radar.

The Burden of Fear

Why are your braces on the outside of your pants, I asked him when he drove himself into the garage onto the wheelchair lift. Why aren’t they underneath?

That’s how he put them on, he told me. He put them on over my pants.

Oh. Do you like them like that? Are they more comfortable?

No. Not at all. I prefer them the other way.

Why didn’t you say something? Why didn’t you tell him?

Because I can’t move. And I need him to take care of me. And I don’t want to get him mad.

I felt punched in the gut. Stabbed in the heart. All the clichés swooped down on me at once. I knelt on the floor next to him and said, You’re the boss. We are here for you, to make you comfortable. It’s your body. It’s your life. You need to tell us if something is wrong. You are in control of your body.

Even if I can’t move, he asked me? Even when I depend on everyone else?

Especially because you can’t move. We are your arms and your legs, but you are the brain, what controls our actions. Unless it is bad for your health, we will do whatever you ask. You cannot be afraid to ask.

Are you afraid to ask me, too? I asked him. Are you afraid to tell me to do something a different way or not at all? No he answered. Never.

But I wonder. I wonder if that’s true. He depends on me more than anyone. He depends on me for his every basic need. I know he’s not hesitant to ask for something, even two or three things at once, but I wonder if he’s nervous to ask me to not do something or to change the way I do something.

I saw him slightly wince yesterday, while I was getting him dressed. After I was finished, he said to me, you hurt me a little before, getting on my pants. Why didn’t you tell me? I asked him. Right there and then, why didn’t you tell me so I could know exactly what I did wrong and never do it again? It’s ok, he said. It doesn’t hurt much now. I didn’t want to make you feel bad, he said.

He didn’t want to make me feel bad for hurting him.

I felt that familiar anger bubbling to the surface. Followed by hate. For the circumstances that got him here. For the current situation. For the people along the way who made him feel as though he may be a burden.

For the overnight aide who complained that she had to get off her ass and off her phone and walk into his room each time he called because he couldn’t get comfortable himself, because he needed her to adjust his pillows or fix his legs or rub his ankles.

This had better be the last time you call me, she said to him that night. I’m done coming in here. I will call your mother down and she’ll be very angry.

She’s right. I would have been furious. But not with him. Never with him. When he told me the next day what happened, I made sure she didn’t come back again. It’s your job, I said to her. It’s why you’re here overnight, getting paid. If he calls you 50 times an hour you need to tend to him 50 times an hour. How is he going to get comfortable by himself with only one arm that works? He depends on you.

He can’t toss and turn. He can’t adjust his head pillow. He can’t do the things everyone else does in order to find that place, that comfortable place where sleep eventually comes. He can’t go to the bathroom without calling someone. He can’t pick up something that falls. He can’t survive without help.

What can it be like not to be able to move? Not to be able to do anything independently? To lie in the dark at night hoping someone is at the other end of the monitor, awake, in case he needs to pee, to move, to vomit, to scratch an itch, to turn over. Sometimes I think he calls excessively at night while heading off to slumber just to make sure someone is there. To make sure they hear him. Because he’s scared. He’s scared no one will answer.

Behind that smile, that good nature, that humor, are real fears of being alone. Of being a burden. Of being afraid to upset the caregivers lest the caregivers stop caring. Even the caregivers that he knows love him unconditionally and forever.

 

Inspiration Porn

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A year and a half after his accident, Damon graduated from high school with his class.  The standing-room-only auditorium was on its feet, cheering, clapping, crying as he, with much help, rose from his wheelchair and  took a step with his right foot toward his diploma.  His dad and a therapist physically moved Damon’s left foot for him, and advanced the high walker which held much of Damon’s body weight.  Damon stepped again, shakily, awkwardly with the right and again the left was physically moved for him.  Cameras flashed.  The local news station took video for the 10:00 pm news.  Air horns, not permitted on the stage, blasted from the stage as fellow students led the cheering for their classmate.   Monumental.  Miraculous.  The brain-injured boy who was never supposed to survive, who, if he happened to survive, was never supposed to be more than a vegetable, had just stepped up to receive his diploma.

What are your goals, he was often asked in interviews, both before and after the graduation.  Where is your focus?  I want to walk was always his answer.  For the six months prior to the graduation ceremony, Damon practiced his graduation “walk” at physical therapy and at home.  For the three years after, as well.  His team’s (all of us) main focus was in moving his legs, so much so that many other aspects of his treatments were neglected.  We pushed him to walk at each therapy.  His therapists wanted him to walk.  He wanted to walk.

Recently, a few friends sent me a video of another boy, at another graduation, who stood up from his wheelchair to walk, with assistance from someone we can only guess to be a relative or a therapist or a girlfriend, across the stage to receive his diploma.  I don’t know the backdrop to this guy’s story….but I decided it had to be similar.  Maybe brain injury.  Another huge accomplishment.  My eyes filled.

But then, another friend directed me to a disability Facebook page where disabled members, their family, friends, and supporters were showing disgust toward this same video and the abled-bodied community’s reaction to the video, calling it inspiration porn.  “Karen, help me out here,” my friend said.  He was arguing with the members who were not hailing this as an accomplishment.  How could they not see that?  Why were they condemning this?

“What is inspiration porn?”  I asked almost with ridicule.  “He rose from his chair to walk! How can you condemn something without knowing the full story?  You don’t know if he’s brain injured or has a debilitating disease, if he is becoming better or getting worse.  It’s amazing that he’s attempting to walk.”

“What’s wrong with receiving a diploma in a wheelchair?” another member asked me. “He makes it seem as though there is something wrong with being in a wheelchair.”

“That’s not the point,” I answered from my fully able-bodied perch. “What’s wrong with him trying to walk?”

“They are cheering for the steps he’s taking, not the diploma he’s receiving,” said another.

I was angry, defensive, my claws were out.  “YOU DON’T KNOW WHAT HE OVERCAME,” I typed, in all caps. “YOU HAVE NO RIGHT TO JUDGE.”

“Look how loud Karen is,” one man typed, referencing my capital letters. “Let’s all be loud like Karen.”

“What’s to overcome?” said another.

I did not understand.  And I could not understand, because I am not disabled.

Inspiration porn, they explained, is the able-bodied-public’s goo-ing and gushing over only a disabled person’s “normal” physical and sometimes normal every-day accomplishments, while neglecting everything else.  What an inspiration, we say, that he took a step! What an inspiration that he stood on his own!  Let’s record it and put it on social media!  Let’s get a million “likes”! (Ouch.  I’ve done this with Damon. I paid more attention.)

“I achieved 3 graduate degrees after my spinal cord injury,” said a third wheelchair-bound-man, “and what do people concentrate on?  My physical therapy and how inspiring it is to see me working so hard to try to regain what I physically lost.  The inspiration is in my achievements after my accident,” the man tried to explain to me. “I earned 3 degrees, I married, I had a child.  But, ‘ooo what an inspiration’ that I am working out trying to become more physically ‘normal’.”

I stopped talking.  I switched my caps off.  I started listening.  Somewhere around this point in the conversation I had an *ahhhhh* moment.  I’ll never fully get it but I think I somewhat got part of it right then and there.  Was I pushing Damon more toward physical goals I have for him than toward life goals….. the wrong goals and perhaps toward failure?

I back pedaled a bit and said, at my son’s graduation we celebrated his life. We celebrated his return to school.  We celebrated that we were told he would not be much of anything, but there he was taking a few right-footed steps on stage.  Everyone cheered the moment his name was called.

But they cheered louder when he stood.  And louder after that when his right foot stepped.

Inspiration porn?

Shouldn’t it have been enough for us and for Damon that he was on stage with his classmates…..that he received his diploma that year?  Were we wrong to take it a few steps further, with his right foot?  We all appealed to the able-bodied bar for achievement at that minute, the able-bodied focus of physical healing as the all-important goal. It made the 10:00 o’clock, the 11:00 o’clock and the next day’s news. Would it have, if he was wheeled across the stage?

Please, before anyone argues, of course we are inspired by his will to live and his fight to come back to us and the miracle that is him….but at that moment…at that moment… we all cheered because he took a step, didn’t we?

What’s wrong with cheering that?  I cannot and will not speak for any other disabled person’s situation.  But in Damon’s case, I will offer this:

On that particular date, those who knew his story (most of the audience) were very touched and very excited and very emotional. His accident, trauma and recovery had all been made very public (by me) and everyone felt involved, and we cheered and cried and Damon had his moment. He wasn’t supposed to ever recover anything, and here he was. And it was awesome. Because we all knew the story. But when the videos were played to a larger audience, on TV, on social media…to an audience who just saw a disabled boy rise from a wheelchair to collect his diploma after a few steps and the crowd going crazy, he was diminished to an inspiration only because he walked, not because he lived and fought and went back to school. No one else knew his story. So that’s where this turns from that emotional moment to that inspirational porn. Disabled boy walks. That’s where the disabled community has the issues, I think. Because so many see the walk and not the full story.

Should Damon’s ultimate goal be to walk? Or, while never giving up trying to become physically stronger or trying to reach that walking accomplishment, should his ultimate goal be wheeling toward a future of independence, a job, a life defined as successful outside the framework of physical ability?  Can Damon have a full and satisfying life if he never walks?  If he’s unable to ever walk again, I sure as hell hope so.

Damon is surrounded by only abled-bodies.  I really need to rethink this. Maybe he should hang with some successful disabled buddies….girls and guys.  At first I said no, Damon’s friends are friends he hung out with before his accident (even though the majority don’t stop by much any more); will he feel weird hanging out with disabled people?  Was I projecting my own feelings onto him?  I feel queasy with my own thoughts.

In that *ahhhh* moment I realized that going forward I can’t be the one to teach him how to be successful with a disability because I, myself, don’t have a clue. And neither do the therapists or the doctors or the case workers who are not disabled themselves.  We, the able-bodied, are biased toward normal every day physicality(s) as achievements.   So I need to find the right people to show him the right way.

I need his focus to first and foremost be on his future.  A happy, fulfilling life.  I need to rethink our treatment plans and the words I use toward him and in front of him.  I always tell people Damon will walk again, and I truly do believe that.  And I’ll never give up on believing that.  But perhaps walking should not be the goal.  Maybe it’s a tool.  A huge tool in my able-bodied mind, but just a tool.  And many successful disabled people have risen above having to use that tool.  And that is what is inspiring.  Not just rising up to walk.  Rising up while not being able to walk or while relearning to walk.

Damon has been told he is already an inspiration for so much for so many.  It’s a word I hate, but a word he likes to hear.  He’s an inspiration for his fight and his will and waking up with a smile every day.  He’s an inspiration for having graduated high school and having gone to a few college classes.  He’s an inspiration for his steps toward his goals, if not the steps, themselves.  I know he can he be an inspiration for those that follow in his brain injury journey.

I will applaud his every accomplishment, whether it’s a test score or learning to bridge his back so getting his pants on is easier. He could have given up and he didn’t.  He’s watched his friends go on with their lives, easily, while he works so hard to maintain the status quo. I can’t apologize that for me he’s my hero in my everyday life.    But I  get what they are saying.

I privately wrote to one of the men in that debate on that Facebook page and thanked him for taking the time to explain to me his idea of inspiration porn and helping me see through his eyes what I’m unable to see through my own.  I heard him.  I’m not pretending I understand totally.  I still envision the same beautiful and happy future for Damon.  But I see a different picture now.  And maybe a different path.  And maybe a different vehicle on that path.

March is Brain Injury Awareness Month. Please spread some love.