To the outside world my little universe is normal - mother, wife, teacher- happy but unfortunately that’s not the whole story. To cut a very long story short, six years ago my husband (then boyfriend of a year) had a massive bleed on the brain. It devastated our lives and still the effects ripple through our every day and will for the rest of our lives. He has been left with weakness down his left hand side, meaning fine motor skills are affected and simple everyday physical tasks are ten times harder for him. He can actually put his socks on using one hand - it’s pretty impressive!
However, the main thing affected is his memory. He does not have a working memory anymore. It’s this fact I am still struggling to understand and accept. For Will he lives each second with nothing in front of him and nothing behind. He writes every detail of his life on his phone and this is the only way he can stay safe and be a part of society.
We try as much as possible to not let Will’s brain injury rule our lives and have worked our butts off to continue along a similar path we were on before his bleed ruined our plans. However, its’ inevitable and hard to ignore that we are no longer ‘normal’ and are not living a life we would choose.
I rarely let anyone into our world fully. I keep people at a distance and don't ever say what our lives are truly like. I keep silent for many reasons. I keep silent because saying it out loud makes it real and I can’t cope with our reality. I keep silent because I don't want to remind Will of his weaknesses - that feels unfair. However, the main reason I stay silent is because whenever I confess any struggles - this is the response I get: ‘oh my husband’s the same’.
Now I know most of the time it is truly meant as a way of helping me, walking alongside me and making me feel less alone. But inside it makes my heart sink. It means we are misunderstood. It means our problems are made trivial. It means I don't share because I am ‘just like everyone else.’
But there is a difference, my husband isn't lazy, disinterested, oblivious - he’s disabled.
My husband can’t remember anything. He doesn't just forget the few bits I asked him to pick up from the shop - he forgets how old he is. He doesn't not listen and gets plans wrong, he does listen but can’t remember. When I first went back to work after Reggie was born, he couldn't remember where I was - I would receive messages and calls asking where I was.
Just recently, Will woke me in the middle of the night shouting: ‘I can’t find Reggie’. He had forgotten Reggie now sleeps in his own room, and has done for the last year. Will requires lots of detail to do the simplest task because he is so lost in his own brain - nothing make sense without help.
A request to go a get a jumper for Reggie goes like this - A jumper? Yes. From his room? Yes. Are they in his draws? Yes. Which one? On the left. What colour? Any. A blue one? Yes. From his draws? Yes. Only after all of these questions does Will feel able to complete the task. Most of the time I am able to stay calm but this exchange will sometimes happen when Reggie is screaming to be fed, I’m burning the dinner and basically just ready to give up. Sometimes I snap. I snap because I’m tired, frustrated, alone.
Our biggest issue at the moment is getting Will into work, employment is hard when your CV is over qualified but you can’t physically or mentally do the same job as before. Each rejection, failed interview and echoing silence is harder and harder to take. As the months and years go by the pressure on me to earn money but still being the primary carer of Reggie is impossible. I am working but still have the same ‘mental load’ at home with the added pressures of caring for my husband. And to top it all off, we fall through every single loop hole in every single system.
I wake up in the night scared for our future. During breakfast I have devastating thoughts about pensions and how we can afford care homes in our seventies. I juggle child care, teaching, tidying, cooking - all while desperately trying to keep my husband’s head above water. This is our reality. It all falls to me.
So maybe I am just like everyone else. Maybe everyone’s husband is just like mine. Sometimes it would be lovely to just hear ‘that’s really shit, I’m here.’