Charles Bonnet, You Magnificent Bastard
It’s been several months since my last blog post but, rest assured, I’ve been keeping busy. My first two articles in a series about the patient perspective have gone live through a collaboration with the good people at Glaucoma Today. The first one, Visiting the Glaucoma Clinic in the Time of COVID-19, came out in January/February and is accompanied by audio. The second piece, Working With Industry on R&D, was published just the other week. In other exciting news, in April I had the pleasure of joining panels at the virtual Patients as Partners and Clinical Research as a Care Option (CRAACO) conferences. Lastly, as a consequence of the speed of my vision loss, I decided to accelerate my transition to full-time advocacy work which began last month. Can you believe that I’m fortunate enough to get paid to educate about the importance of incorporating the patient perspective?
In other exciting news, I’ve somehow managed to plug into a tremendous network of ophthalmology patients and advocates from across the spectrum and across the world. Patients with retinopathy of prematurity (ROP) from South America and Europe; Leber’s Hereditary Optic Neuropathy patients from the East and West Coast; Retinitis pigmentosa patients from a few different geographies; as well as adult onset Stargardt disease patients in my own backyard. Dare I say it? Though we all have differing perspectives, the experience has been...eye-opening.
For starters, I realized that I very easily could have been an ROP patient as the conditions primarily impacts preemies weighing <2.75lbs and born at <31 weeks. Next, I've had a few interesting group conversations with those born blind and those who lost their vision later in life. Those born without vision have often argued that they imagine it to be easier to be born this way than to be born sighted and progressively lose your vision. Though I can't be sure, I tend to think this would be true in most cases. Finally, I’ve had a few people ask what the hardest part of vision loss has been for me and they’ve all expressed a sense of terror and dread when I explain that the most challenging feature has been the fact that I can no longer trust what my eyes (and brain) are telling me. Historical markers that don’t exist on fence posts and all that.
Whether what I’m experiencing is a form of Charles Bonnet syndrome, a phenomenon characterized by visual hallucinations triggered by significant vision loss, or just a mysterious quirk of my rare disease is anyone’s guess. Irrespective of cause, it has, however, gotten me to change by behavior. I’m probably driving 90% less than I used to. When I’m in the passenger seat, I have to fight the urge to tell the driver that I’ve checked both ways and our path is clear. If I’m running with a buddy, I have to remind myself to trust their eyes and not my own. These have been some pretty big changes. While I definitely have more good days than bad, I think it’s important to acknowledge how challenging such a visual metamorphosis can be. I was recently reminding a fellow patient that it’s okay to not feel okay. I realized that the reminder was probably good for me, as well.
Originally published at https://richiekahn.wordpress.com
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