You’ve never been diagnosed with anything before. Right now you are standing broken and alone in a mostly empty second floor apartment full of packed boxes. The early evening mid-June sun creates this unforgettable shadowy glow that hurts your eyes. Your eyes. But your heart hurts more than your eyes. The boxes and the cat, Kangaroo, belong to Dory. D left forever earlier today to go far away and committed to more than ten years of training and service. You’re very young, but have a serious career and that career will end should you agree to be a nomad spouse or whatever, constantly moving. You and D diverged. Deal with it. It's over. Just feed Kangaroo and leave. But Kangaroo looks as surprised and broken as I feel. Her what’s going on look in her eyes reflects back the what’s going on look in your eyes?
Oh yeah, an hour earlier you made a stop on the way home from work and were told that the eye infection you had last week was better. But they noticed the to you yet unpronounceable Keratoconus. Your initial reaction was apparently not all that abnormal. “Huh? Say that slowly. Word origin please? Can you spell that? Dudes, why are there two of you ODs telling me this? Why the long faces? This seems trivial. Just change my RX, right?”
You were totally calm and normal as you heard that your vision would continue to fail and you would eventually require hard lenses and that 20% of keratoconus patients would end up needing a corneal transplant.
You will never forget this day and simultaneously time block it out and slowly bleed it out in silence. But don't ignore the keratoconus part. Don't let the next two eye doctors you see convince you at your next appointments that the first doctors were wrong, and you don't have KC. Don't accept 20/80 vision with Toric lenses as “the best we can do.” Take Allegra. Take Benadryl. Stop rubbing your eyes. Find the right doctor and get the right lenses. Start reading about the disease. keratoconus requires you to be your own advocate.
You won’t do this. Instead you’ll struggle until you are 20/400 in both eyes with Torics. You somehow function all the way until 20/400 and refuse to tell anyone. Bad idea. You’ll be alone in a surgeon’s office in 6/2016 hearing "you need a transplant." You’ll go to another doctor in 7/2016 and hear “you need a transplant.” Then you will wake up.
You won’t schedule the transplant. You’ll make the decisions now. You’ll get the right lenses and CXL first. Too early to tell, but it looks like you finally did something right. You did copious research, learned about epi-off CXL, scleral lenses and the significant decrease in rates of transplant for keratoconus patients in the CXL approved era and made a more conservative treatment call that is working for now.
As for the part about you and D, don't block out the pain and pretend like you are OK. Right now, you’re not. It’s ok to be sad for a bit. And when another special person comes around in a couple years, don't become absent and scared because of those same feelings again. Why let it die on the vein?
By the way, you'll talk to D again. You and D will actually be overtly in love and connected with each other again. But as of the date of this letter, even though D is now free, you've both basically agreed "maybe in another life" and you’ve successfully accepted that you must compartmentalize and move forward. And you’re doing well. You’re in the moment and you’re strong. But still, the burning from the fading, flickering, but eternally warm candle of hope you carry, gently and quietly burning in your chest pocket, sometimes awakens. D has a candle too. Is it ok to stop from time to time and feel the burn? Is her candle burning too? You’ve both been down many complex and fascinating roads since that all went down. Those travels have refined and scarred and otherwise impacted each of you in so many ways. Continue traveling down different roads. Keep moving.
This disease has made you a more humble and understanding person. It has also made you sad. And scared. Flash forward 2016, and now you can see just fine by keratoconus standards, and you have been places and seen things and created something you never dreamed you would. The person you are today is totally prepared to continue to achieve the goals that you have set and is prepared to continue to learn and live and prosper. You’re coming out the other end of the tunnel and the heat from the first rays of the sun hitting your shoulder is warming your soul. keratoconus is losing right now. You drove at night yesterday. Thank you scleral lenses.
This "Letter to Self" was shared by John Costas.
John is an environmental lawyer from Carrboro, NC. His work focuses on improving air and water quality both here in the USA and abroad.
John is an environmental lawyer from Carrboro, NC. His work focuses on improving air and water quality both here in the USA and abroad.
Write a letter to yourself on the day of keratoconus diagnosis.
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