I have been struggling so much to write this blog. I have written, re-written, deleted, screamed, kicked the chair, made a coffee, re-write, delete, made another coffee, had a shower, played a game on my phone, delete, re-write, counted the tiles on the floor and then do it all over again. Why? Because I’m so afraid of what I have to say might offend someone. But if telling the truth hurts then so be it. I am usually quite tactful with my words but sometimes brutal honesty is what is needed.
Recently, a lovely friend of mine pointed out how wonderful it was to have a Facebook page about Paul’s progress, activities we do during the day and our life with Traumatic Brain Injury (TBI)….(scroll down to the bottom for a link to the Facebook page if you have been living under a rock). She told me it was such a clever and modern way for people to “connect” with Paul. I explained to her that this was exactly why I started to share our story on social media. The support from everyone is very much appreciated. It is a fun way to keep Paul motivated and get the kids involved with his care. However, looking at pictures on social media and actually connecting with the man himself are two completely different things. If I don’t find creative ways to keep Paul engaged, we would be screwed. I have seen first hand how a lack of motivation followed by depression, anger, frustration, a longing to die and telling the whole world to go f*** itself can mess with a person’s mental health. These are only a few of the issues I have to battle with inside Paul’s head.
When I married Paul, I vowed to be there in sickness and in health. Am I an idiot? Probably. Do I take my vows seriously? Damn straight. So after his accident, when I knew he could hear and understand me, I reminded him that I would always have his back. So just imagine, the “hype” of Paul’s accident has died down. Paul was now in the brain injury rehab unit. He was stuck indoors all day attached to a feeding machine. Apart from the hospital staff, the only people he would see was a select few of his immediate family. So while life went on for everybody else, it hit the pause button for us. Paul had our unconditional support all day and well into the night. Between me and his dad on a daily basis, his mum weekly and the rest of our immediate family peppered in between, Paul was seldom alone, physically. But it was not hard to see that Paul was craving the attention from others, you know, the ones that weren’t his wife, kids and parents.
Over a period of weeks, I could see a halt in Paul’s progress. He was not interested in participating in physiotherapy. He had no will to engage in his speech exercises. He was sleeping all day and I knew it was just to pass the time. I was depleted because I knew he was letting go of any hope. I tried reaching out to friends and family. I had very little response and the responses I did get were mostly bullshit excuses about a lack of time. I knew people just felt uncomfortable to be around us. We were in the “too hard” basket and it is far easier to just avoid us all together.
While I was feeling bitter and absorbing Paul’s spiritless energy, I was struggling to understand how, at a time when he needed people the most, we were left so alone in the world. How could people not see how self-centred they were being? If I heard yet another person say to me “it’s hard for me to see Paul that way,” I was going to blow. Did I want to see Paul this way? Did his children? His parents? In the face of trauma, you should just be there.
It took me a good 2 years to let go of the anger and hurt I felt toward a lot of people. Even as I write this, the memory of the pain I felt is flooding back and the tears are welling up. But I have a better understanding now of human behaviour. I changed MY OWN attitude about the whole thing in order to heal. Once I changed myself, my energy became one of positivity, hope and above all, love like no other. I was not going to allow Paul to go onto a downward spiral because I had a vested interest in this man’s rehabilitation and life.
I get it. Paul doesn’t talk, he cannot engage in conversation, you don’t get the feedback from him that you once could, he doesn’t smile or laugh, he doesn’t tell fart jokes (that were never really funny, just gross) and he can’t give advice. But there is nothing wrong with his listening skills. He will blink twice if he agrees with you. He will will have no response or turn his face away if he doesn’t like what he is hearing. Just because he can’t talk back doesn’t mean he is not engaging. Many people don’t see this because they don’t give Paul the chance. He is the same person, he is just not able to respond the way people are used to. I would hope, especially for those people re-evaluating their own behaviour right now, you think about a scenario if this was your child or someone you were very close to. Would you turn your back on your child because he or she is in the “too hard basket?”
Paul continues to have the same need for social interaction. This is heartbreaking and I am speaking on behalf of anyone out there who has endured the same type of prejudice. It’s hurtful and it says more about the those who stay away than those who choose to embrace the injured and learn to accept the new norm. But if you choose to, we welcome your friendship wholeheartedly.
From this I chose to learn, grow and heal. My psychologist taught me that this human behaviour, although sometimes strange, can be quite common. I started accepting that people were not going to support us the way we needed them to and I am ok with that.
If people want to be in your life, they will be there.
Questions? Comments? Drop me a line! email@example.com
Check out my Facebook page http://facebook.com/thecarefactor.tbi
Check out some of my previous blogs:
Have you ever laid in a hospital bed and listened to the chatter of the nurses? Its particularly interesting, especially if your room is right by the nurses station. As I sat by Paul’s bed, in a short space of time, I learnt that Amanda needs to swap shifts with someone because tomorrow afternoon, sheContinue reading “Somebody Get Me A Doctor Part 1”
For anyone that has sat inside a courtroom during an active case, you would be familiar with the deafening silence of anticipation. Nobody speaks, everyone is waiting for the judge to finish reading the litany of information from a thick white folder. Every now and again you would hear the turning of a page. IsContinue reading “Law and Order”
This was not my first rodeo. I always had to pack half the house for Paul to stay in hospital. Hospitals always seem to be under resourced and ill- equipped to look after someone as complex as Paul. With bags full of Paul’s stuff, I took the lift up to his ward. Before entering theContinue reading “Bad Medicine Part 2”