For most people, 14th February is associated with Valentine’s Day. For me, the significance has shifted. It’s not about flowers or chocolates. It’s the anniversary of the day my life changed forever and what is, without a shadow of a doubt, the strangest Valentine’s Day gift I’ve ever received; a visual impairment certificate.
Wednesday 14th February 2018 was the day that I received my Usher syndrome diagnosis.
A familiar sense of dread
The funny thing is that you almost expect something like an annual ophthalmology exam to become like a habit, that you would get more and more used to it every year. To an extent, you do. I know to expect the stinging feeling when I have the pupil-dilating eye drops. I know to expect the blue cross and the red dot and the bright white light when I’m taken to have my eyes scanned. It’s the same routine, the same tests. But it’s also the same knot in my stomach, the same fear that this will be the year the consultant tells me that my scans look worse, that my condition appears to have progressed.
This year, my appointment fell on the 13th February. My wonderful mum picked me up from home and took me to the hospital and sat with me through every step, from the eye drops to the consultant appointment, as she has done every year for the last 7 years. The bright lights of the retinal scan felt harsher than previous years as it captured high-resolution images of my eyes, images that held so much weight. The slit lamp test felt like it took forever, too. And then finally, the words we were hoping to hear:
“Everything looks the same as last year.”
It’s funny how anxiety grips you for days before your appointment and you barely realise until it starts to ease. Because as much as I’m okay with my diagnosis, as much as I’ve accepted it as a part of who I am, as much as I take every day as it comes and cross bridges when I come to them… I have no idea how I’ll feel when the day comes that my eyes begin visibly deteriorating. Even seeing my scan photos and realising just how different my eyes look to a healthy eye is daunting and it really puts into perspective what, exactly, is going on inside my eyes. My retinal scan (below) shows white and lighter grey cells surrounding a darker area in the centre. These lighter cells are the dying and deteriorating cells, whilst the darker centre is the area containing healthier cells.
Back to Life, Back to Reality
Then, after all of the build-up and tension, life carries on as usual.
After my appointment, it was straight home to carry on working from home for the day. There was no grand celebration or little treat for making it through another appointment full of uncertainty. Life went on as normal, just as it did before my appointment, and just as it will continue to do. Even as I worked for the remainder of the day, just about managing not to royally screw anything up despite my blurry eyes, I had to remind myself of the significance of the day – even stability is a victory. Knowledge is power and for now at least, I know my journey is still steady. When that changes… Well, I’ll do what I always do and cross that bridge when I come to it.
P.S. I’d originally subtitled this section as ‘Back to Reality’ but, and this is me showing my age, that immediately made me think of the Soul II Soul song so I hope you enjoyed the throwback R&B reference.
