People are so judgy, aren’t they? I do my best to keep my opinions to myself on social media- I don’t have the energy or interest in engaging in a war of words with someone whom I don’t know. I am an avid reader of the comment section as I find it most amusing to see the intelligent and wise mixing with the fools and un- woken; who gain their sense of literary freedom from behind the mask of a keyboard. Oh but how fun it is to read the debates of religion, vaccinations, political propaganda, medical advice and social justice….
I was quite elated to have been asked to write my story for a website promoting humanitarianism and love triumphing over trauma and challenging situations. Of course I was up for the challenge- not really a challenge as I already write my story here but another platform to spread awareness about my experience caring for my sexy beast of a husband with a TBI. It wasn’t long after my story was published, I was approached yet again by another media platform wanting to write an article about our life. Naturally, I wasn’t going to say no. If our story can help someone out there- to give hope to someone in a bleak, deep, dark time in their life, then it’s worth the effort, am I right? I’d love to be an example of that.
I didn’t expect to receive the peppering of negative comments amongst the positive ones, once it was published. Although written beautifully, I absolutely forgot that I would be able to read the almost instant feedback which our digital era has allowed me to do. At first, I skip- read most comments, gaining a sense of mostly positive responses from readers. I then decided to read aloud the comments to Paul and the carers. For anyone thinking the article portrayed a life where all was roses for a man with a TBI, let me assure you, that is far from the fucking truth. To anyone thinking that Paul obviously had no say in decision making during the critical moments following the accident- of course not; he was in a damn coma. Until you’re placed in such a situation, you don’t actually know how you will respond or what decisions you will make- I’m pretty sure I’ve mentioned this before. No, Paul didn’t have an advance care directive nor did we have a will, power of attorney or guardianship order. I don’t actually know anyone our age who does, but, knowing what I know now, I sure as hell would recommend you do have one while you are of sound mind. Nobody in their right mind would want to be in Paul’s shoes. Not even Paul. But to predict that he would be a quadriplegic and unable to talk is not something anyone could do, no, not even the medical professionals. I stand by my decision, even when waves of guilt wash over me. When I see him struggle so much, I take myself back to that time; who I spoke to, how I felt, the advice I was given and what I felt in my heart. It was the right decision. This was personal and spiritual. I do not owe anyone that explanation but my story is about love so strong that it can conquer and heal something as horrifically tragic as having a husband, father, brother, son, friend with a disability.
What you read our story in digital print it is merely a snippet of what is a very complex, stressful, exhausting and painful life. Deeply rooted amongst the angst is defiance, the love of family and friends, proving you are more than the disabled label suggests, knowledge that healing comes from within first, dealing the cards you have been given, not giving up, turning life’s lemons into tequila- shot chasers.
So with all due respect to those people who have a negative view of our life, there is nothing there that hasn’t already tormented me, but I can’t turn back the hands of time. What I can do is cherish every moment I have with my family, work hard to help Paul heal, surround myself with people who bring me joy and be grateful that God has allowed me to wake up every day and share my story.
Questions? Comments? Drop me a line! firstname.lastname@example.org