Learning to Trust Myself Again After Becoming Disabled

How do you start all over again when you’re already exhausted and hurting? How do you choose to carry on when you want to give up? How do you chose to live when all you want is for the pain and grief to end? This is a struggle so many of us face after a serious injury or illness that leaves us debilitated. There are so many simple things we take for granted that when they are taken away from us, we face feelings of fear, isolation, grief, hopelessness and anger.

When I was hospitalized, I was faced with a choice between being transferred to a long-term care facility where I would get all the care I needed but likely fall through the cracks of the system, or to GF Strong, where I would begin rehabilitation and work towards enjoying a fruitful life. I remember feeling a rising, almost panic-inducing sense of fear. The idea of picking myself up and marching my weak, aching, twisted body through painful rehab made me feel like cowering in my lonely but safe little void. But the thought of living out the rest of my days in a bed, eating there, bathing there, toileting there… living another 40-plus years in this safe and quiet but utterly demoralizing self-exile was scary!

That dark pit was preventing me from living the best life possible. And worse, it was leading me into a future that was intolerable. A future where independence and autonomy were a thing of the past. A future where I lived in a perpetual infantile and dependent state. That was not for me! So one morning after my bed bath, I asked to see the physiotherapist, and from there began my incredible journey that was well worth the struggle and the pain.

I chose to live, to change my attitude and recover. I decided that if I was going to do this, I was going to go all the way. I would do absolutely everything I needed to do to recover fully. So I dove in. For months after the surgery on my ankles, I spent hours a day in serial casting boots that painfully stretched my ankles into 90 degrees. After that was time on the tilt table, learning to stand on those feet. Bearing the body weight even a 10-degree tilt put on my feet was excruciating! But the day I was tilted up to see out of the window on a beautiful summer day was the first day I felt real hope.

Another huge challenge was simply teaching my body to hold itself erect again. I was too weak to even sit on the side of the bed without an overhead swing to support me. I struggled to activate my core muscles in order to sit up for mere seconds. Over and over again I worked at it. Sitting in a wheelchair for more than half an hour was enough to start the inevitable spasticity that wracked my body. Even my tracheostomy was complicated, taking 11 months to come out, and learning to chew and swallow again took another six months. But, by the time my discharge date came up, I had done it. After 17 months in the hospital, I was ready to transfer to GF Strong!

At GF Strong, the rehab only got more intense. A strict schedule of PTs, OTs, psychologists, speech therapists, wheelchair techs and so on occupied my time and energy for the next 10 weeks. It was demanding, painful, frustrating, and the progress was so slow! But there was progress, and as long as there was progress, there was hope. And as long as there was hope, I worked.

By this time, all that effort, all the crying and sweating and swearing I had invested in myself had lit a fierce fire in my belly. And guess what? It had paid off! I could finally stand up, all the way, on my own two feet! I taught my only functioning hand, the left non-dominant one, to accomplish almost anything I needed to do. I could eat all kinds of foods without choking, and I was able to sit in my chair for most of the day.

I got an electric wheelchair, which meant two very crucial factors: independence and autonomy. I was free to decide where I wanted to go and what I wanted to do. I could leave my room. I could be a part of the world again. I saw people and they saw me. I could buy a coffee, read a book in the sun, watch a ball game at the park, see a bird, a squirrel, a dog. I lived for real. And I wouldn’t have traded that for all the safety and quiet of private little bubble in long-term care.

I had exactly the drive I needed as I moved to Connect Communities, where there were a whole new set of therapists and schedules, a whole new learning curve, and a new level of pain. But if I wanted to continue to improve, I had to do the work, so I did it. I learned to walk again without any aid. I began to use the computer again, watch the news and write. I started making my own appointments and activities. I spent more time out of bed than in it. And my first hand surgery was a roaring success, so I became ambidextrous. I was living for real.

But choosing to live does not necessarily mean living well. And there began the next stage in my recovery. As I was nearing the end of my stay at Connect Communities, I began experiencing a few setbacks and disappointments, and the reality of my future rehabilitation became apparent. I was not going to recover fully. It a was devastating realization, and it brought back all the anger and fear I had pushed down. I began hating myself and my body again. I wondered if I was ever going to have a “normal” life. I was unhappy, unsatisfied and resentful because I just couldn’t accept that this was my lot in life! I was still angry, still lost, still asking why.

After a year and a half, I moved from Connect into my permanent Family Care Home. It was a difficult transition with me feeling fearful and angry and depressed. I was lost without the drive to recover I had before. I went through the motions of exercising, but without energy or hope. I had done the next best thing to accepting it. I had resigned myself to it. It wasn’t enough. It was enough to say, “OK, if this is the way it’s got to be, I’ll find a way to live with it,” and I did for a little while. I fell into another limbo, another vacuum of self-exile where I decided I did not really belong in this world, that I should have died, that I will never really have a normal life. Then two things happened:

First, I began to get invited to share my story. When I saw how simply sharing my experiences touched people, it inspired me to see myself for who I actually was: a warrior. I had fought battle after battle against incredible odds and I had won.  I was showing others how to be warriors too, and that felt good! I felt like I had purpose, that this broken life might actually have meaning. It connected me to other people and so turned my focus outward. I started a Facebook page and a website dedicated to bringing awareness, humor, and a little humanity to life with a disability. And as I continued to share and try to connect, I began to feel better about myself and about my place in this world.

Second, I started to make things, to build things, to lose myself in the quiet act of creating. It took me out of my head and away from the nagging in my body, and it elevated me. I think using our imagination and our emotion to create something beautiful or fun or useful reaffirms that we are human and we belong in this world. Especially if it’s for someone else. If I am creating something beautiful for someone else, or something that will resonate with or help someone else, it gives me a buoyancy and I actually enjoy being alive.

I realized these things I’m doing that are making me feel good and human and connected are all about giving back. I had spent years dependent and needing of other people. I was never able to do anything for myself, closely monitored and handled with care. It feels both selfless and empowering to do something for someone else. It feels comforting and interesting and fun to connect to other human beings. It feels right. This is when I began to accept that I have a different life with different limitations, no more or less difficult or stressful than anyone else’s life.

It’s not all “rainbows and unicorns.” Do I wish my body would function the way it did before? Of course I do. Do I get pissed off and feel sorry for myself sometimes when my disability gets in the way? You’re damn right! But when I look back at how far I’ve come, do I feel joyful and positive about my life now? You bet your ass I do! This illness, these losses aren’t the end of me. They aren’t the end of my life — nor should they be.

I think it’s about trusting yourself and trusting your body, which is hard to do because your body has betrayed you. But your body knows what to do. It has a memory, it will get stronger, but it needs you to do the work. I believe we don’t get through these things because we are strong. We get through them because we become strong. The more we endure, the stronger we become. So if you’re telling yourself you can’t do it, you’re not strong enough, then stop. You can do it. You are strong enough. You are your greatest supporter, your greatest source of strength. I believe if you have the power to tear yourself down with depression and fear and anger, you certainly have the power to lift yourself up with determination and courage and self-love.

You don’t have to do what I did. I’m not saying my way is the way. But when I began to trust myself and do the work to support my body in its recovery, I began to feel stronger, and the stronger I felt, the harder I worked. When I began to connect with myself through creativity, I felt happier. The happier I felt, the more I connected with other people. And when I connect with other people, I accept myself and my life as it is.

If I’m being completely honest, I think I’m actually happier now that I was just before I got sick. How ‘bout that? So connect with others. Create for yourself. And most of all, trust yourself. You have it in you!