Everything Living With Retinitis Pigmentosa Taught Me

I still remember the day my optometrist solemnly delivered what was, at that time unbeknownst to me, the most tragic news that will change my life forever. I am so, so sorry. You have a rare genetic disease called Retinitis Pigmentosa. There is no cure. I suspect you will be legally blind by age 40. It was obvious from his grave tone that he wished he did not have to say these words out loud, or at all.

I walked in the clinic that morning with one goal in mind: to get my optometrist to sign off a DMV waiver, confirming that my vision, with corrective lenses, was within normal range and I am perfectly capable of driving. A few months before then, I made the decision to get a driver’s license. That goal was immediately crushed as soon as I failed the preliminary vision test at the DMV. Nonetheless, I set forth to get that waiver signed as soon as possible. After an hour of reading off letters from a Snellen chart and panicking every time I get asked if “one” or “two,” or “three” or “four” gives me better eyesight, I was written a brand-new lens prescription. I clutched that piece of paper like my life depended on it. Ok, so that’s kind of dramatic, but It was in fact, in my mind, a one-way ticket to getting a license; to reaching every adolescent’s dream: freedom and a superior sense of independence. Little did I know that no matter how much I hold onto that piece of paper I would still be walking out of that clinic with a prison sentence instead.

My optometrist was wrong. I was legally blind and a captive of Retinitis Pigmentosa at age 22. At 23, I was trained to use a white cane – the very symbol of my disability and worse, my loss of autonomy. I never got that driver’s license in case you were wondering. I am filled with anger and frustration each time life reminds me of my limitations. My psychological and emotional well-being have both taken a hit over the years since my diagnosis from feeling like a burden on others (hey, can you give me a ride to here and here? Sorry I’m such an inconvenience) to the persistent anxiety that roots from the uncertainty of my future (when will I go completely blind? Will I see my child grow up? How will I travel and see the world like I always wanted? Will I remember the face of my loved ones when I can no longer see them?). 

I was wallowing in self-pity one afternoon, but after a nice walk and a breath of fresh air, I was inspired to lay out everything that Retinitis Pigmentosa has taught me. Maybe it was connecting with nature, the cool fresh air that I adore, or the smile a passerby gave me, but I realized that buried in all the pain and distress are lessons that, for some of us, can only be learned in the darkness.

To appreciate the gift of sight. I do not know what it is like to be completely blind (not yet at least), but fueled by frustration, I selfishly think that I would have rather been born completely blind because I’d rather not know what it is like to see, only for that to be taken away in the future without my consent. During my walk though, I realized that no, there is way too many beautiful things to see and even though I may one day only see darkness, at least I get to fight to keep the images of those beautiful things imprinted in my memory – a luxury I would not have gotten had I been completely blind from birth. Friends, sight is a privilege. It is a gift we tend to forget not everybody receives. Don’t take it for granted.

You don’t have to be perfect to be perfectly loved. Very frequently I feel like a burden and an inconvenience to others. This is a stressor that I deal with every day. I especially feel this way towards my husband. I constantly apologize for not being able to be independent enough to run errands, without having to wait for him to come home from long hours worked at the hospital, taking time away from his already jam packed and energy sapping schedule. There are things needed to be done at home that I have time to do, but not enough eyesight to do correctly. I tell him that I fear one day he might get tired of having to bend over backwards for me, to drive me to places, and do other things I could be doing if it weren’t for my disability. Also, does he really want a wife that is likely to go completely blind in the next decade or so? But friends, I am reminded every day that these things should not even be concerns of mine. Each day, I am shown unconditional love by my husband and my family. They love all of me, including my flaws, imperfections, limitations, and disability. They will drive hours and hours, take me wherever, help me however, and travel across the world if I need them. My sweet father even volunteered to give me his eyeballs even though he knew it was not that straightforward. The point is, they will do it if it can be done and if it will allow me to see completely. No matter how much my eyesight deteriorates, I see clearly – like 20/20 vision clearly – just how much I am loved and accepted whole-heartedly, and I didn’t have to be perfect to be treated as such.

To learn to wait and surrender control. I am an intense and ambitious person, sometimes to a fault. I grow impatient quickly, I like to be in control, I like to do things my way. I like everything to be perfect that way I envisioned it. It’s hard to do all that and be a perfectionist when you are legally blind and have to rely on others a lot. I may have never gotten the true sense of independence that having a driver’s license entailed, but I did learn how to wait and surrender control. I wait for my ride services every day to go to work, I wait for friends to run errands so I can join them, I wait for my husband to get home to do certain things, I wait for packages to arrive because online shopping is just practical when you can’t transport yourself to the store easily, I am never behind the wheel, I have to hold onto someone in crowded and dim/poorly lit places, and I have no control over the speed in which my cells decide to eat my retina away. But here’s what I learned: I don’t always have to be in control to get to my destination – literally and figuratively – but I can play my part and let the rest play out.

Independence is still within reach, but interdependence is an option. I still mourn my loss of independence. I hate that I can’t travel alone and that I have to depend on others to get certain things done. I strive hard to earn my independence back by learning to use my white cane, public transportation, and carrying the brightest of flashlights so I can navigate the outdoors in the evening. However, it will never be a true sense of autonomy, not in the way we all think autonomy should be. At the end of every day I still rely on my white cane, on buses and trains to be on time and to actually show up, on my flashlight, hoping it doesn’t malfunction while I am using it. I realized though there is something much better than independence. That is, interdependence – a mutual dependence between people, founded on collaboration, reciprocity, and mutual benefits. I rely on my husband to take me to the grocery store, but he relies on me to scan our fridge, take inventory, and create a list so he does not mindlessly buy all the things from Costco. I rely on my friends to drive me to the mall, but they rely on my opinion to avoid a fashion disaster and to stay on budget. I rely on my loved ones to remind me I am enough, I am loved, and everything will be fine, and they rely on me to remind them they are enough, they are loved, and everything will be fine. It’s less burdensome than wanting to carry all the weight and do everything alone, independently.

To be mindful of what I lay my eyes on. One day I will lose my sight – plain and simple. It’s the reality of it, so why am I wasting precious years of being privileged enough to see, dwelling on the things that only cause me pain? I realized that instead of only relying on what I see, I need to start learning to trust what and how I feel and place more value in that. Having Retinitis Pigmentosa is teaching me to stop dwelling on how I see my body in the mirror, and instead focus on how I feel about it without the influence of the number I stare at on the scale. It is teaching me to stop judging a person’s outfit or their haircut or any other shallow physical feature and instead, listen to their story and know the true, inner them. It is teaching me to pursue and make time for things that give my soul joy – to buy and read that book, do that puzzle, create the art, snap photos of everything, order that dish that “looks really good,” admire a tree, admire a blooming flower – instead of dwelling on things that really don’t matter. RP or not, the good things in life are fleeting, so we should all be mindful of what we choose to see and choose to invest our energy in.

When I walked out of that clinic, I knew what having Retinitis Pigmentosa meant for my future. I was, at first, blasé about it, protected by the conveniences of being a college student living on campus. I still played competitive golf, attended classes, and did most of what my peers with normal vision do so how bad could it be, right? Less than four years later, you can say that the depth of my blindness blind-sided me (pun fully intended). I was not prepared for it and I am still not completely at peace about it, but in everything painful there is always a lesson to be learned, something beautiful to cultivate and grow. The biggest thing that RP taught me is the importance of faith. To live and build a life not by sight, but by faith. Faith in myself, in my family, friends, and loved ones, in the fact that a cure can emerge any day, and in Something bigger than myself and my disability.