but my life has become blurred of late. It wasn’t always like this.
I was 5 years old before I realised I may be different.
“Mom where are you?”
“I’m right here my girl, saying goodnight to your brother, come in”
“I can’t see you Mom, it’s so dark”
Retinitis Pigmentosa (RP), if you turn binoculars the wrong way round, I similarly have tunnel vision, no peripheral sight, sensitive to bright light and at night I am blind in the dark. I started Grade 1 wearing glasses, and sunglasses were essential to cope with bright light, but my life didn’t change dramatically, I continued the way I knew, playing all the sport I wanted, socialised like every other child and got on with school academics. Nothing was going to stop my life plan which I had carefully structured for myself – or so I thought.
Fashion Design was and still is my passion. I loved the course, the colours, drawing, and artwork, the matching of textiles and all the design elements flowed freely from my creative spirit, I graduated Cum Laude and off to work I went. My drivers licence liberated me and I was independent and living my best life. Night driving in well lit suburbs was even possible.
Running became a major part of my life. I love the freedom of a run, the disassociation with reality, the banter of the group and the acceptance of the group. The endorphins released, just make life SO good. My running club and running friends became “my family”.
After three years in the fashion design industry I went back to Varsity and studied General Business and Accounts and went on to do my Articles in Auditing.
At the start of my audit articles I applied for new glasses, but the optometrist picked up that I had cataracts. Loyalty to my initial ophthalmologist, who ignored removing the cataracts cost me precious vision time. In 2017 my new Doctor explained that it would be essential to remove the cataracts to efficiently see what was going on with the retina behind. With the cataracts removed and with new lenses inserted he was free to probe further.
Be brave, listen, focus. RP results in tunnel vision and not seeing peripheral things and of course, night blindness, Macular Edema, on the other hand is a build up of fluid in the macula at the centre of the retina. The macula is the part of the retina responsible for sharp, straight-ahead vision.
In 2018, we began draining the fluid, using Vitreal-S injections into the eye. These excruciating injections took place every six weeks until my eyes seemed stabile. Two months later when fetching the reading glasses he picked up that swelling had returned so I had another injection.
Towards the end of 2018, insecurities around my vision had started creeping in. Socialising at night became more difficult, and with the demise of working street lights, driving became impossible. Close your eyes for a minute and imagine yourself at a gathering. You can hear your friends laughing and joking, you need to stay seated somewhere. You need someone to get your drinks, escort you to the bathroom and back, you smile the best you can when you are the butt of a joke (made with the best of intentions to lighten the mood). Can anybody see me?
I started experiencing blurred vision. I’d open my laptop. Blurry. I would have to wake up an hour earlier in order to train or drive to work, so that my eyes could settle. I was training for the 2019 Half Ironman so the pressure was on to get into the pool, go for a run or get on the bike. The hour became 2 hours before I could focus. Burnout as I completed my articles at the end of November. Worsening vision, I could no longer even walk alone. Christmas with my family was fraught with insecurity and fear. I now needed constant assistance. The Doctor was gobsmacked with the rapid deterioration since the last injection, he was unable to explain it but diagnosed secondary glaucoma. He said surgery was not an option, and tried to treat me with medication. Two weeks later he told me there was nothing more he could do, I would lose my vision.
Focus. I was still committed to The Half Ironman on 26 January 2019, days after the devastating news. It was all I had. I made an appointment to see a Low Vision Optometrist to get some sunglasses for the race, got horribly lost, and missed the appointment but got a full 20 minutes of his valuable time anyway. He listened, and explained Glaucoma, its causes and treatments and assured me that surgery was definitely an option. He promised to try and get an appointment with a Retinal Ophthalmologist in Gauteng.
Triathlons are daunting for the sighted. Would I be able to find my way coming out of the swim to get to my three different bags? Or find my bike without bashing into anyone or falling? I swam with determination, but missed the last buoy and went off course, which delayed the ride . The highlight was coming out of the water and finding my brother and Ouma there for support. On went my reading glasses with clip on yellow lenses to exclude the glare without making it too dark. My bike ride out was not bad but the wind on the way back was tortuous and my dreams were shattered when I was taken off the course for not meeting the cut off time. Sad. Depleted. Exhausted.
Octavia – Selfless, kind, loving, brave. Her bubbly morning disposition deals with my often grumpy starts. She had always been part of my extended running family but after she became aware of my exact situation she and the Low Vision Optometrist persisted together and got me my appointment in Gauteng. I arrived home from the Half Ironman and packed for my appointment. A trabeculectomy needed to be performed to regulate the pressure in my eyes. A Port Elizabeth Ophthalmologist performed this procedure the following week.
My left eye was operated on first and at the end of the month my right. I moved to my parents’ house for regular follow ups and continuous application of eye medication. My world had became small, dark, dependent. My childhood and running friends never faltered in their love and support. I began to gain more clarity in my right eye, but the damage in the left eye was too extreme.
Miraculously, I started a new job In April of 2019, in auditing. My boss and fellow colleagues are incredible and understanding.
Octavia got me walking and soon I was believing her and the possibility of getting back on the road again. Octavia had the experience of running with a blind man when living in Cape Town. He taught her everything she needed to know. We have our own language. She counts down obstacles and steers me. I either hold her elbow and run slightly behind her, or we run alongside each other with a reflective belt around her waist and a tether attached to me. We found that a lightweight walking stick works well for steering me on trail paths when we can’t be next to each other. She chats to me about what is going on around us and describes what she sees coming. We laugh, cry, sweat. Our steps are one. I feed off the adrenalin and endorphins. Running is my salvation.
My serious running started in 2015, where I was set on completing half marathons, full marathons and triathlons. The 2Oceans 56km in 2018, was a highlight. When Octavia and I completed the Addo 44km run this year I was unprepared for the attention we received. The camping and support was phenomenal, the vibe exceptional and the race itself a real challenge and adventure. We entered the finish shoot aching, tired and delighted. I will definitely be back!
I live independently again. My brother and sister-in-law happily transport me. I am blessed.
Having worked in fashion and design, it is important to me to dress well. I have had the odd hit and miss day of clothing coordination, but have learnt the order of my cupboard by feel. My artistic side still aches to be fed, I plan on feeding it. Jack Vettriano’s sensual paintings inspire me. Music and ballroom dancing, my heartbeat. Sewing and painting are loves, my lack of peripheral vision makes both of these difficult.
I have Wanderlust to see different countries and feel and taste different cultures.
I plan on training for and completing another Ironman, hopefully alongside my brother.
I have loved and want to love and be loved again.
I DREAM IN COLOUR AND RUN WITH WOLVES and my name is Kat Flanagan