You know when avoiding something becomes so exhausting you are almost forced to face it?
Well that was me last month. In the bottom of my rather tatty handbag was a crumpled and barely legible leaflet, reminding me to go to the opticians. It had been stuffed there deep down, where only random wrappers and receipts sit for 18 months. Every time I caught a glimpse of it, I would feel nauseous and bury it deeper. I congratulated myself on the bravery I had just keeping it in my bag. No bravery here – I was just kidding myself.
The appointment was booked for the half term holidays, my daughter and I were going to face my demons together. Since my second diagnosis of RP (Retinitis Pigmentosa), an eye check of any kind was enough to send me running to the bathroom. One, to vomit and two, while I was on my knees anyway; to pray that none of this was real in the first place.
When I was 16 this very same optician was my knight in shining armour. Against the backdrop of an awful diagnosis as a teenager, he strolled in with a sword and shield and made it all go away. At that time, he was right but my happy ever after turned out to be just a temporary reprieve. I got an extra 24 years so I’m trying to be grateful but it hurt my heart to tell him that I had been diagnosed a second time and this time there was no fairy-tale ending included.
This journey took three bus rides. My daughter was just enjoying the adventure and behind my smile I was drowning in the unfairness of it all and the ever present fear that my girl could have the same faulty genes as me.
We arrived. The air in the room felt like sand in my lungs. My heart was heavy and pounding in my chest. He called our names. My daughter went first. She was so excited to look at the twinkly lights and impress the eye guy with her reading; that for a second I forgot why these appointments drag me down through the floor into a suffocating abyss.
“Perfect, perfect. Wonderfully healthy and you’re so good with your reading!”. Oh the relief was indescribable. He turned to me as I said. “So her eyes are all ok, her retinas are normal?”
“Yes, everything is just fine”.
I escorted my daughter back out to the waiting room where my mum was waiting to take her for a milkshake. We said nothing and everything in the silence of that handover. I made my way back into the room. I looked at the all too familiar exam chair and chose to sit down in the seat furthest away from it.
“I’ve been avoiding you for so long and I don’t even know where to start…”
Well I did start. I told him everything. The March 2019 diagnosis, the further tests, having my driving licence taken away, the deterioration, having my hopes of the kind of parent and wife I wanted to be dashed, alongside the chance to have more children. It was the most emotionally raw I had been about it for years. He cried.
He has his own personal struggles and I had mine and in that moment we allowed ourselves to view our situations for what they are. Sad and desperately unfair. In that moment I really wanted to know why this was happening to us. Why do some people have it so much harder?
He asked permission to give me a check up and although every fibre of my being wanted to run, my brain told me to sit my ass down and get it done. I didn’t come all this way not to go through with it.
My visual acuity is stable and pretty good, my visual field has deteriorated since he last saw me and my pressures were fine. For someone like me, that was a good result. My daughter was fine, that was a fantastic result, a prayer answered. At the end of my appointment he and I did the one thing that was left, when no words could make this alright. We hugged. I can’t save him and he can’t stop this happening to me. Out of all of the things to have in common, I would give anything for incurable diseases not to be one of them.
Stepping outside having confessed all, I felt a mixture of relief, sadness and a level of weariness that made my bones feel like bricks. I held my daughter close on the bus ride home. She was ok. She was healthy. As a mother, protecting her with all that I am, this was everything. I’m aware that I’m still shielding her from my truth but in that struggle, I’m managing to make sure that she does not have the same all consuming fears that I have.
I faced it. It wasn’t pretty but to know that it’s done is a huge weight off. That night as I watched my daughter sleep, I whispered a thank you into the stillness of the night. My prayer was answered, there are truly no words that could express my gratitude but I thought that was a good start.