Friday, 21 August 2015

Life update and the adjustment to life in a wheelchair

Before we get started, I’ll warn you guys that this is an emotional and very difficult post to write. If you leave comments, please be gentle and kind with your words (as usually are). Thank you!

I’ve been meaning to write this for a while, but I’m not really sure where to start or how to organise my thoughts or where I am. I guess the beginning is a good place.

I first want to say thank you so much for all your support, kindness, and loving messages. You really have no idea how much they have lifted me up, and have given me a bit of courage. I’m still having a hard time talking about what has happened and the consequences my accident will have for the rest of my life. That’s why I have at times been quiet, or have taken so long to respond. So yet again, thank you. It’s just difficult to read what I have written, what others have written, or to put words on paper. It’s a strange place where I am at right now.

For those of you that don’t know – About 5 months ago, a steel beam fell on my back. I wasn’t ‘smushed’ but it hit me, causing a severe spinal cord injury. My husband and I were working on our house at the time.

It happened in one second. One stupid moment that caused my life, the life of my husband, our son, and my family to change forever. My husband warned me (we were attempting to hoist the beam up to support the ceiling so we could take out a wall). He warned me not to go under the beam. I wanted a break. I wanted to hurry up. I didn’t look. I didn’t see that it wasn’t secure.
And then everything went black. That was it. I’m not even sure what exactly happened. Or rather how exactly it happened, but I will forever remember those first few moments afterwards. That pain. The fear. The absolute soul wrenching fear that consumed my heart and mind for the next few months started right then. I knew.

I woke up and my previous life was gone. I was only out for a few seconds, but when I came to, I knew exactly what was happening. I screamed. I can’t even describe the type of pain it was. I couldn’t breathe but I needed to scream.

Then my husband was by me. I told him to call an ambulance and that I couldn’t feel my legs. They came. I got morphine. It helped, but not. We went in a helicopter.

The stay in the hospital was heavy. I was helpless and truly realised the extent of my injury. There was one particular incident that really made it sink in. I had to sit unsupported at the edge of the bed. I couldn’t balance. I realised that I would have to learn to do everything again.

You see, a spinal cord injury doesn’t just mean you can’t move your legs, but also has implications for how you balance, how you can sit, as well as how parts of your upper body function depending on where your injury is.

Once I made it to the rehabilitation centre, I was working on re-learning everything. I needed to be independent again. But more than that, I needed to be able to take care of my family again.

I really struggled there at the beginning, especially when I saw other patients working on learning to walk again. I couldn’t see it without bawling and wishing that my injury was less severe that if I could move just a little bit. Slowly, after talking to other patients, I realised how different and equally horrible different types of spinal cord injuries are. My injury is very low, and I have very good feeling in all of my upper body and a little bit in my legs. My legs however cannot move. The cords connecting the signals from my brain to my legs for movement have been severed.

There are also injuries where the cords are not completely severed, but are partially intact. My cords for feeling are partially intact. In the centre, I initially couldn’t understand how people with very high injuries (in their necks and upper spinal cords) could still walk. I figured that their bodies were fine and couldn’t help but feel that I was so unlucky. I got into a pretty dark place of comparing myself now to how I was before. Comparing myself to other patients.

Eventually, I realised that their bodies weren’t fine.  I learned a lot about these types of injuries. It’s crazy how unique all of our bodies are You can actually have a high/neck level injury, have the ability to walk, but no ability to move your arms or hands. It really shocked me at some point in my self-pity process that one particular patient with exactly that type of injury was still smiling and seemed happy. He had to be fed each meal, but still had a smile on his face?

At some point, I suppose I realised that I was getting in the way of my own happiness by constantly thinking ‘if only’ and ‘she/he is so much better off’ and ‘why me?’. The thing is it happened. This is my life now and I need to make the best of it.

In the rehabilitation centre, I was told quite a lot that it’s good to show your emotions. To  be upset, to be angry. I was upset. In the beginning, in the hospital, in the first few months, I cried and cried and cried.  

And then I had a day without pain. A day where I didn’t need help from the nurses. A day where I was just doing what I needed to do and felt just fine. And then another day. And another. I realised that it had been a few days since I had cried. In the centre, I also had my own bedroom which meant that both Y and my husband could spend the night whenever they wanted. A few months into my healing process, the hubby would leave Y with me for half of the week. It was pure bliss. Those days – alone with my child and doing simple tasks together like brushing his teeth and me actually helping him again gave me unbelievable strength.

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The absolute worst, heart wrenching feeling I had the whole time was the separation from my son. I felt such a  deep emptiness, as if my heart had been pulled from my body because he was no longer near me. I was so scared that I would never be able to take care of him again. That I’d never be able to be alone with him. It was awful.

The first time he stayed the night with alone with me was easy though. It felt normal and really opened my eyes to the fact that I could still mother even if I couldn’t walk. I could still do those beautiful things we used to do together even though I couldn’t walk. And Y still saw me as his mother. 

He still asked me for help. He still asked me to sing songs. He still wanted to play cars with me. Not his mom that could walk, but me, his same mom that has to sit.

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It didn’t matter to him that I couldn’t just jump out of bed but had to take some time to get in my wheelchair. Now, if I’m on the couch and he wants me to do something, he asks me to get in my chair. If he wants a hug, he climbs on my lap and gives me a hug. If he wants me to go somewhere, he tells me. If he wants food, he either takes it himself or asks me to make it. 

It’s amazing how quickly he has adapted because not once has he asked me to stand up. Not once has he asked me to walk. But he does ask me to sit.

Now that I'm home, I feel like I'm finally at a point of acceptance. Of learning how to cope. Of managing. Of wanting to feel normal. I’m just not sure what normal means for me anymore. 

I still get sad about everything from time to time. There are still many struggles in my daily routine. But it's okay. I'm getting there. It's just hard. It's so very hard. I never realised how much effort it would take to just be 'okay'. 

I still have days that I get sad. I have days with pain. And I hate it. I don't want to be sad. I'm over it. I don't want to constantly talk about it anymore. I'm done acknowledging it. I don't want to be slow. I am just desperate to be able to be efficient in my chair. I want to feel good. I want to feel normal. I don't feel strong on the days when the pain is bad or when my sadness is present. 

My husband told me on one of those days that sometimes, I'm strong just for getting out of bed. I didn't like that he said that. I don't think I'm strong because I got myself dressed. Because I got out of bed. I expect that from myself. That's just what you do. 

Maybe I'm too harsh on myself, but I really struggle to accept it when people tell me I'm strong. I don't feel strong. I still cry. I struggle to accept it when people say it's okay to be upset. When they compliment me for dealing with my injury as well as I am. I still want to be faster, stronger, better. 

I can't quite explain why but it's hard to hear (or read) the positivity from other people. I don't want to need to be strong to get out of bed. It means that I'm not normal. And I need that now- that normalcy of being able to do the things I do without putting too much thought or effort into it. It will come, I know that. It's getting easier already and that gives me hope and peace. 

Each day means I have a new chance to practice, a new day to figure out the best way to cook, the best way to get around and do things that I like to do. It's getting easier. 

All in all, my sadness and mourning for what I thought my life would be like no longer has a hold of my life. It's there sometimes but I won't let my sadness take over. I just want to go on with my life, enjoy all of the beautiful things I already have, and be happy. I'm still alive, I have a husband, a child, a home. The smile on my son's face when he sees me every morning is enough. The love I feel from my husband is enough. If they can love me as I am, I should be able to, as well. 

I'm realising now that life goes on. I’m realising now that all of the things I used to be able to do, I can still do, but differently.

And that makes it okay. That means I can get my life back. I can still be a mother. A wife. A daughter. A friend. I don’t need other people to do things for me (except reach things in high places), but I can take care of myself. And my family. And that right there makes it okay. I can get my life back. I’m getting there. It’s taking time, more time than I want it to take, but soon, I’ll be there. I’m okay. 

I'm learning to slow down and to enjoy those small moments that I used to be too busy for. I stop folding laundry if Y asks for a cuddle. I stop washing dishes to go play with cars. I put away the computer if the Husband wants to cuddle. We spend more time together. We value each other more. That is beautiful. That is precious. That makes me happy. Wheelchair or not, I still have a life, and it's a good one.