Nobody sees the real face of this disease.
People see an amazingly strong girl with parents forced into strength by circumstance. They see a girl that looks poorly at times and parents with heavy eyes. What they don’t see would break them.
People don’t see the fear in the eyes of a child that can’t stop vomiting nor the tears of a dad that can’t make it better. People will never hear the cries of our girl when the chemotherapy drugs make every joint in her body ache. They won’t hear two terrified parents snap at each other due to the stress of the situation.
I’m admitting that I’m struggling. Seeing my daughter going through this treatment is killing me. Although the results are good so far, the side effects are enough to drive the most rational of people insane.
I’m usually the voice of reason. The voice that speaks calmly and uses logic to assess everything. Recently, I’ve become an emotion driven wreck. There’s no hiding my feelings any more, there’s no disguising the hardship.
For years I have been the strong silent type. My mother, father, all of my grandparents have passed. Thus far, I’ve carried on as best I could and maintained strength. Of course there was the occasional tear but for 364 days of the year, I was still me.
I now struggle to remember what it’s like to be me.
I fear being anything but alone. I hate the thought of large crowds and full houses. I’m uncomfortable being asked how I am, always shrugging the same “OK”. I fear that my wife doesn’t grasp my feelings and cannot empathise. I very rarely open up to people but when I do I’m usually met with “you’re doing so well” or “you have to be strong and carry on”.
Sometimes, all I need is somebody to tell me that it’s fine to not be OK. Someone to listen to my thoughts and not try to rationalise or analyse. Someone to just accept that sometimes I feel like shit. Someone to accept that on occasion, I want to lock the front door and keep the world out, just me and my family in our fort.
Before all of this, my phone was always by my side and never turned off. I would answer messages within seconds, every call immediately. Now I frequently turn the phone off for days at a time. I’ll ignore calls or messages because I’m either busy dealing with Evelyn’s treatment or sometimes because I simply don’t want to talk to anyone. It’s nothing personal against the callers, I’d ignore the call if it were the Queen. I simply don’t want to be bothered. I’m grateful for the fact that most people will send a text and simply await a reply, understanding that there’s a lot going on both in my hands and in my head.
I’ve changed, it can’t be something only I’ve noticed. Here’s hoping that one day I can change back.