We all have secrets that we carry around like tiny treasures waiting to be revealed; the anecdotal secrets that we pull out in conversation with casual acquaintances and the deeper darker secrets that we share with only those who are closest to us. RP is one of my secrets. It is a secret because to the casual observer I appear normally sighted; I don’t yet use any mobility devices and I have learned to get around pretty well, with only the occasional bump, spill or fall that inevitably gets blamed on clumsiness. It isn’t something I intentionally keep secret anymore, it is just hard to know how and when to tell people. Every time I make a new friend, I agonize over telling them about my disease and wonder if it will change the way they feel about me. It makes me feel different and broken and it makes me wish I didn’t have such a secret to tell. But tell I must.
Sometimes the opportunity to tell falls into my lap. When I was first hanging out with my friend Patricia (check out her Etsy site, called Connie’s Girl, from my blogroll) I began to think about telling her almost immediately; I really enjoyed spending time with her and I wanted her to know why she was always the designated driver. One afternoon, we were in the tattoo shop waiting for our friend Emily to mix her inks and get her needles ready and Patricia showed me the book she was reading. On the cover was a picture of a tattooed bald blind man; the book is called Cockeyed and it is a memoir about a man who has gone blind as a result of Retinitis Pigmentosa. No time like the present. I looked up at Patricia and said” this is so weird, I have the same eye disease as this guy”. The book is a great read by the way. When I told Patricia, it was relatively easy and she didn’t gasp or fall on the floor or reject me as a friend; quite the opposite. She is one of my closest friends and has been supportive and interested and totally cool about always being the designated driver. She also introduced me to the man who would become my husband.
When I met my husband it was like a fairy tale. I was reluctantly accompanying some friends to a New Years Eve celebration that happened to be at my husband’s apartment. Little did I know when I walked in that night that less than a year later it would be my home as well. I remember feeling incredibly nervous as I walked up the stairs to the apartment, although my friends had told me that Joe was one of the easiest people to be around. I walked in and Joe walked out of the kitchen in his jeans and t-shirt and stocking feet, holding a cup of tea and greeting us with the warmest smile; I felt instantly at ease. I shook his hand and turned to put my coat on the back of one of his dining chairs and when I turned back to face him he was holding my earring in his outstretched hand. I felt like Cinderella. Two years later I married my prince charming, but before I married him I had to tell him my secret.
Of course I remember the fairy tale aspects of that evening, but I also remember the moment before I noticed that Joe had his hand outstretched with my earring in his palm. It is the moment in which I recognize that expectant look in someones face, that occurs when they are handing me something that I don’t see; the moment in which I remember that I am different, that I should be able to see that outstretched hand but I have been robbed of the ability to flow through this life gracefully. The moment is fleeting and quick; so quick that no one would ever know that I can’t see what is around me. It is also the moment that makes me begin to wonder when I will have to tell my secret.
The New Years Eve celebration was a success as it resulted in Joe asking me for coffee. He suggested that we meet somewhere, but I had to tell him that I don’t drive; he didn’t seem bothered by my status as a non driver and I wondered how he would feel when I told him how I came by that particular status. I knew I wouldn’t tell him on our fist date. First dates are for getting to know the vibe of a person and sharing those anecdotal secrets. I wanted him to see me for who I am and not just as some poor blind girl. So, should I tell him on our second date? Or our third? I didn’t know. I was afraid. Afraid of scaring him off and being defined by my blindness and getting rejected. But I knew it wasn’t fair to keep my RP from him for too long, so after we had been on three or four dates, I told him. Joe didn’t bat an eye. He said ok and gave me a kiss and we went out to dinner. I guess he thought it over and decided he liked me, RP and all, because a year and a half later he asked me to marry him. Joe had been my support and my love and my very best friend. He has gotten involved with fundraising for research about RP and knows way more about all the current research around the world that I ever have. He is my champion and I am forever grateful that I ventured out on that New Years Eve.
In the three years that Joe and I have been together, my vision has been stable but I have had to stop working and am now on permanent disability. Keeping the secret at work was too much effort and I often came home at the end of a work day in tears, because the pain in my eyes was so severe. I couldn’t take the glare of the computer and the neon lights. I was also constantly exhausted from over compensating to hide the fact that I couldn’t see. I remember one particular all day meeting that took place in a room that had a wall of windows facing an outdoor courtyard. The sun shined in through the windows and everyone was delighted to be having the meeting in such a lovely spot, but I was devastated. I knew I would have to wear my sunglasses for the entire meeting and that I would get comments. I wasn’t disappointed. At the lunch break, one of my co-workers approached me and said,” I guess you always have to try to be cool, wearing your sunglasses in a meeting”. I just smiled and jokingly replied, ” I am always cool”. Inside I was mortified and pissed off at what I felt was the total insensitivity of my coworker, but she didn’t know I was going blind. I always made a point of telling my supervisors and closest colleagues that I have RP, but I didn’t think it was a secret everyone needed to know. I continued to work for four years after this incident, coming home at night in pain and in tears and feeling constantly afraid that the people I worked with would discover my secret.
I feel such a sense of relief now that I no longer have to work and try to blend in with the sighted people in the working world. I have become much more willing to tell people that I have RP. I write about it and talk about it. I explain why I don’t drive and I ask for help to get across a crowded room. I live with the bruises that come with crashing into a world that I don’t see. I accept that I am going blind but I also admit every single day that I wish I could, just for a little while, flow gracefully through this life.
April 9, 2012 at 2:53 pm
Beautifully written. Beautiful woman. Beautiful friend.
April 9, 2012 at 9:27 pm
Thank you my dear dear friend. I love you.
April 9, 2012 at 3:07 pm
Yes he thought it over and decided he loved you, he didn’t have to think for very long! I am also glad you showed up that day.
Your Husband. xx
April 9, 2012 at 9:28 pm
Me too honey; that night changed my life. I love you so very much!
April 18, 2012 at 4:57 am
Lovely post. Funny, I don’t think of it as a secret and am happy to tell anyone and everyone. It’s no different in my mind than my bizarre situation working in Nottingham and living in Cambridge (2-hrs apart, which means weekly commuting); or having two children; or being a classicist. All of which people can react to in both positive and negative ways. But I’m much more resistant to being officially labelled ‘disabled’. That’s definitely my problem.
May 7, 2012 at 3:40 pm
I am definitely less secretive about it now, but it was one of my big secrets for a long time. It sounds like your life is so full and you live it with such confidence. I am looking forward to reading more about you and your life.
July 23, 2012 at 8:03 am
What a lovely and touching story – I was surfing around for stories about retinitis pigmentosa as my ex-bf also has this condition. He broke up (abruptly) with me a year ago and gave the reason that I was not the one for me.I accepted it and tried to move on. A month after our break-up, he told me that he was fearful of having to face reality as he cannot accept going blind, and hence, cannot see himself getting married and having a family. While I’ll never really know what’s the real reason for his sudden decision to end our relationship, I hope he finds it in him to accept RP and not avoid it. Would be good to hear from you if you’ve heard of similar cases of denial? Thanks!
July 26, 2012 at 1:44 pm
Hi Michelle –
You have tremendous spirit and generosity and I was very touched by your message. I think that RP is different for all of us and we all have different areas of denial. I am sure that your ex boyfriend will find his way in his own RP journey and come to a place of acceptance. In the meantime, I hope that you are finding happiness in your life.
January 20, 2014 at 10:58 am
i was looking for an ideas for a tattoo about RP because i have it. Then i found this story and i was amazed because these experiences are so similar to mine! Im turning 18 this year and sometimes it just feels like im exploding because i have this big secret i have to carry along all the time and sometimes im just really pissed because i cant understand the reason why it had to be ME who got this dicease … Alltough i would not want to see anyone suffer because of this. But Im happy to hear that you have found love and i hope that i will be as brave as you with this. 🙂
January 22, 2014 at 4:26 pm
I hope you know that taking the step to write to me and open up shows how very brave you are. I know there are times when those of us with RP feel so very alone, but please know that you can always reach out to me. I definitely have my pissed off days too and I honestly think I deserve them, cause having RP sucks. And then there are the great days when I know I am stronger and wiser because of the challenges I face. I also have a bunch of tattoos and would love to hear what you decide on for your first one. Keep in touch.
February 3, 2018 at 9:17 pm
As I continue to read, I am still in awe of your ability to recall and retell events. It was like I was at that party. I wondered how you met, so thank you for finally sharing the tale with us.
February 13, 2019 at 8:14 pm
You are both very lucky.
I have 7 more years of catch up. I’m getting there.
February 14, 2019 at 6:06 am
You truly are amazing Paulie! Thank you!!! You will find repetition I am certain. It has been so long and the writing in those first years so patchy and loaded with uncertainty.