Relentless Romero Blogs
Saturday, September 5, 2015
Coming out of the closet: I am Legally Blind
LIVING A LIE, UNTIL YOU CAN FAKE IT NO MORE.
I have always heard about the term “coming out of the closet” as it relates to sexual orientation. I recently realized that I also lived this tortured existence as it related to my visual condition.
I have a degenerative eye disease called Retinitis Pigmentosa (RP). It is a disease that slowly causes your retina to deteriorate; hence, you are slowly robbed of eyesight and eventually end up blind. I was diagnosed with RP at age 14 and had 20/70 eyesight, some blind spots, full peripheral vision and night blindness. The doctor who diagnosed me hypothesized that I would be blind by the time I was 30, and that being a doctor or lawyer was out of the question. I am now 45 with 20/200-400 eyesight, some more blind spots, a 20 degree field of vision and severe night blindness. It has been quite a journey to get to where I am today, and I am writing this to help those going through sight loss to cope with the journey, and for loved ones to support people going through sight loss. So here goes . . .
Going from the sighted world to the unsighted world is a very strange experience. When you are sighted, and can “fake it” you feel like you fit in. You feel “normal”. You don’t feel “special”. Nobody calls you “disabled”. When I was a teenager, that is what I wanted (I now realize, that’s what I’ve wanted my entire life). When I played sports I didn’t want any special treatment. I didn’t mind tripping and falling on things, as long as I didn’t need to have a long winded conversation about going blind someday. In fact, I avoided the discussion, except with the closest of confidants. Part of me didn’t think I would be accepted if people knew there was something “wrong” with my eyes. What girl would possibly want to go to homecoming with a guy who couldn’t even drive at night. Imagine the situation – you like a girl and muster up the courage to ask her to a dance. Then, you are elated that she actually wants to go with you. Then, you have to ask her if she wouldn’t mind driving and picking you up because you have this eye condition that makes you night blind. I remember the torture of this situation like it was yesterday. It was horrible. I was on the football team, very social and always wanted to go to homecoming; but, I never wanted to have that awkward conversation with a girl. I felt guilty for having to ask her to drive. I felt less than a young man for not being able to drive. I felt trapped by RP again. This was a prime example of “living a lie”. Trying to fit in, because that’s what you think is “normal”. I was faking it.
I had large print books in high school. For one normal size text book, I would have eight books that were 2′ x 1′ in size. I hated carrying those things around school. I stood out like a sore thumb. People would always ask me “what are those”? I never explained that I had RP, would go blind someday and I needed the large print books to see. Rather, I realized that the books drew attention to me, and I stuffed them back in my locker. I took the normal size book to class and pretended like I was following along. I learned to memorize the information, and grasp concepts from lecture. I could not see the chalkboard, even from the front row. My Mom had helped me get a monocular (like binoculars, but only for one eye); however, I always felt awkward sitting in the front row with a monocular struggling to read what the teacher had written on the chalkboard (whiteboard for the younger generation). What I learned to do was to fake like I could see in school, then I would go home after school and sports practice, and lock myself up in my room for hours. I would sit at my desk with super bright lights and magnifiers and read the books and learn the information in solitude where I would not feel different. In my room, I could take the time I needed, and I could put my face as close to the book I needed to read, and I could use 3 desk lamps to light the page if that’s what I needed. I could do all of this in my own little private place. I was “in the closet” with my eyesight.
From outside appearances, I was able to get straight As, play sports and have a seemingly normal social life. However, I was living a double life. When I left my room, I would have to “fake” being sighted. When I was at sports games, I could never see who had the ball or what was happening. I learned to cheer when others cheered. I learned to look in the direction other people were looking. I did this not because I knew what was going on, but because it would be really awkward to constantly ask people to narrate what was happening. I looked like I could see, and I was pretending like I could see.
It is really awkward to hear statements like:
Did you see that play? or Look at that? or It’s right over there (with a person pointing to show you).
I always wanted to respond with, “I can’t see it. Can you describe what you’re seeing to me?” I did try it a couple times, and people looked at me like I was being difficult. People couldn’t understand how I looked so “normal”, but I really was not. The assumption was that I was trying to get attention. To the contrary, I did not want any extra attention. I proceeded to use the coping strategy that had served me well for many years – I just faked it so I wouldn’t have to deal with awkward situations with others. By faking it, it was only awkward for me . . . I was saving others the feeling of awkwardness (or so I thought),
I went on to college. In college, I had to tell my roommates about my eyes, because you really can’t fake it when somebody else is living “your closet”. I had varying reactions from roommates. My first roommate was indifferent and unhelpful. I had other roommates who I was extremely close to and they helped me. With this latter group, we became very close and we all had fun with my failing eyesight. They would re-arrange furniture in our place and unscrew all the light bulbs. The concept was to take advantage of my night blindness, make me disoriented and not know where anything was. I figured out ways to get them back, like when I was introduced to their girlfriends I would accidentally shake their breasts instead of their hands (after all it is difficult to see hands in dark bars). These roommates eventually became family to me, and I had a closet big enough for four guys. However, when I left our apartment, I was back to faking it. When I went to class, I sat in the front row and slept. I found out that when you sit in the front row, the professors look right over you and don’t call on you. I slept because I would spend every night at the library with magnifiers and my books catching up on the information I could not understand in class. I learned to learn from books well. I just needed more light and magnification so I could learn. When the library closed, I needed to tend to my social life so I would go to friends places or parties. A lot of college was spent at night and in the dark – – – a very difficult thing for a person who is night blind.
When at parties, I could not see where people were. I learned to listen very well and look where the voices were coming from. I learned to control conversations and ask questions so I would not have a stray person who I could not see interject a question that could expose my lack of sight (for instance, if you’re talking in a group, and somebody asks a question you should look at them to respond. If you’ve been to the keg a couple times, you may not pick up where that person is at, and you may answer their question by not looking towards them – they would know I couldn’t see them). My sense of hearing and smell heightened. I learned to use both to my advantage. I loved using my sense of smell with the ladies. I used to have all women’s perfumes memorized. I could tell who the girls were at parties by their perfume. My roommates were always astonished and jealous when I would be talking to a girl and I knew her perfume. The girls were always flattered that I knew their perfume, and they seemed to really appreciate that I noticed such a subtle detail. The fact was, that was how I “saw them”. Without memorizing voices or associating people to scents, I would never be able to recognize the new friends I had made when it was daylight. I met them in the dark, when I was virtually blind; then, I was expected to follow-up on the burgeoning friendship in the daylight when I had no clue what they actually looked like……but I did know what they smelled and sounded like.
I was faking it. I was in the closet…..again.
I am so thankful for my Mother, who pushed me go to college and graduate school. I am a bleeding heart liberal, and she always told me that I could go and save the world, but first I had to get an education. To her, that meant I needed to get a graduate degree.
I graduated college with honors and went on to law school where I got a full ride scholarship. The nice thing about law school was that there was so much reading, I finally had all my classmates with me in the library reading. It took me longer, but at least it wasn’t as lonely. It was a good thing that I got all my schooling out of the way early, as today I opened up a text book and realized that I could not see a letter. I saw the lines and knew that it was text, and I saw the pictures; however, it is now impossible for me to use my eyes (even with magnification) to acquire information as I did in my schooling. Law school was much like college – I told few about my eyes. When I did, I would just say, “I don’t see that well”. Most of the time that was met with, “Oh yeah, I can’t see anything without my glasses.” I never followed up with, “that’s great that glasses can correct your eyesight…mine cannot be corrected….I have 5 more years until I’m supposed to be blind….and can you please come closer because I can’t see your face from that distance.” Who on earth wants to be “that Debbie Downer?” Not me!!!
I resorted to the safety of my closet. What I have known so well. I had a closet with a secret that I was ashamed of for some reason. Society did not want me to be going blind. I needed to pull my weight. America is the land where the strong survive and the weak……well, nobody really focuses on what happens to the weak. “It’s a dog eat dog world”.
When I graduated from law school, I went on to be a lawyer. I was an associate working at a mid-sized firm for 5 years. It was a world of reading. I even had one case where I spent 8 months in a document review – – – a guy with RP was reading documents day after day. I would go to the firm and lock myself in my office. It was my private closet….I would have lamps and magnifiers….and I would have privacy to be different. It was difficult when I would go to depositions, or when I would have to interact in other settings. People would point to something and say, “I am referencing Exhibit A.” If I didn’t have my tools (magnifiers and light), I was lost. Or, if we were on location at a Superfund Site and somebody would point out something in the distance – I had to fake seeing it. I would later research what it was that was being described; but I was faking it!
As a lawyer, you are expected to bill hours. In Colorado, it gets dark early in the winters – – – say 4:30’ish. I was able to get a drivers license with an eye doctors support (I never could pass the eye test at the Department of Motor Vehicle). The eye doctor had to fill out a form saying they thought I had enough sight to drive, then I would have to prove I could drive every time my license renewed. My license, however, was restricted to daylight only.
I felt pressure from the firm to work at least until 6 pm to bill hours. That meant that I would be driving at night for about 4 months out of the year. I hated it! It was nerve racking, and I absolutely hated doing it. My firm was in downtown Denver, and I always remember pulling out of the parking garage in the evenings into the darkness. I memorized the route home and had driven in hundreds of times. I knew where every cross-walk, and well populated areas were. But my fear was that errant drunk that may stumble into the street, that bicyclist that wasn’t paying attention, or the worst thing on earth – – – A DETOUR!!! To my friends who don’t see well or are in similar situations, I have some simple advice – – – DON’T DO IT! Thankfully, I never had an accident in the dark. Somehow God was watching over me, even though I was exercising extremely poor judgement. I was faking it. My closet had changed….but I was faking it. I didn’t feel like I had a choice. This was my career, and I was doing what I was supposed to be doing . . . . wasn’t I?
I eventually left the firm and moved to a corporation, GE. I was in house counsel there doing contract review. Again, I was faking it. I would read all day long. I had stacks of contracts I was reading, editing and re-writing. The job was in Boulder and I lived in Denver. There was no way I could safely drive that distance in the dark….even if I memorized it, it was too far and too dangerous. I decided to take the bus to and from work. I needed to make a good impression, and I just like to work hard anyway. I used to leave my house at 5:15 am and walk a mile to a bus stop in the dark. Then I would take a 1 hour, 45 minute bus ride to Boulder, then walk to my office so I could be there before 8am. At 5 pm, I would start the journey home. Usually, I would get home around 8 pm, if there were not accidents or snow. I did this for 4 years. By car, the drive to Boulder was only 45 minutes from my house. Because I needed to take the bus, I added an extra 3.5 hours to my daily commute. I had just had a child and had no choice but to do whatever I needed to do to support my family.
After about a year at GE, I found my way out of the law and began a career in business. I rotated through risk, financial services, marketing, operations and sales. After 7 years with GE, I had become the General Manager of GE Capital in Puerto Rico and was on an ex-patriate assignment with my family in the Caribbean. I learned that business was not as “sight intensive” as the law. I was able to use my brain to solve problems, and my personal skills to build relationships. These were things that I was forced to over-develop because of my poor eyesight. They served me well, as I was able to accomplish the supposed impossible, and continuously pull rabbits out of the hat. I was however, still living in my closet. I only told people I had “bad eyesight”. I still remember the day when my CEO came to me and had an honest conversation about my eyesight. I must have shared that I was going blind with a colleague at a function. My CEO had come to Puerto Rico and asked me what was going on with my eyes. I took her through the story of my diagnosis and the prognosis. She looked at me in disbelief and asked if I was OK. I shrugged and said “sure.” From that day forward while I was with GE, I had support like I never had in any job.
With clients however, I had to be “normal”. I remember that the dinners were probably the most difficult thing for me to fake. I would constantly be entertaining dignitaries, foreign executives and client executives at fancy restaurants. It seems like the fancier the restaurant – the darker they make it. I would always have my assistant make reservations at the best lit table. Or, ask that the restaurant place A LOT of candles on the table. Or, I would try to have the meeting during daylight hours. I was always faking it. I would meet very important people, and be doing multi-million dollar deals with people who I could not see. I would meet these people in a dark setting and I would not be able to recognize them in daylight. I learned to always be friendly to everybody . . . first, because that’s what everybody deserves, but second, because I may already know them and not recognize them.
As the leader of a large organization, I always received criticism that I didn’t know everybody’s name. The fact was that I could not see people’s faces without invading their personal space. I never told HR that I couldn’t see people’s faces. I confided in my assistants along the way. They would always help me and re-introduce me to people. These people are the wind beneath my wings. I was constantly faking it. It was horrible, and it was torture to not be able to just be me. I would be the same person if I told people, “hey, I’m going blind…..now can we get on with the business deal at hand?” But, I didn’t do that…..I faked it and I would have my closet for safety when things got too tough.
After 10 years with GE and a great career, I had to move. One of my children has special needs and there were no further education options for him in Puerto Rico. My marriage was also stressed, and I felt like it was time to go back home to Colorado. When I returned home, I went through a horrible divorce. I became a single parent who had become legally blind. I was still driving in the daylight, so at least I could keep my kids lives “semi-normal” during daylight hours. During night-time we were basically on lockdown at our house. There no longer was a spouse to take us to birthday parties, sport events, entertainment, etc. Where ever we were at, my kids suddenly felt the stress that I felt – – – I had to be off the roads by dark. I tried to be as entertaining as possible for my kids, but I know it is an extremely different experience for them to go between the two different environments. When I take my kids on trips, I always look for cities with good mass transit so we can get around at night.
After GE, I worked for Western Union for a bit. That fizzled out when I was doing the job of 5 Vice Presidents who had been downsized and I asked for a full-time assistant as an accommodation to help me read the 300 e-mails I was receiving daily. I began getting harassed for my eyes after requesting the accommodation. I experienced first hand how ugly people can get. The company asked me to get an eye examination to prove that I really had an eye problem. I went to the doctor, and brought back a note saying that I had RP and I was legally blind – 20/200 with 30 degree field of vision. I gave it to HR, and the HR Director told me it was not good enough. She gave me a packet of papers and told me I needed to go back to the eye doctor to have the papers filled out. I was shocked that a note saying that I was “legally blind” was not “good enough” to get an accommodation. It went downhill from there. Apparently I had faked it so well before getting the note confirming blindness, that they just didn’t believe me when I brought the doctor’s note.
After Western Union, I ran a non-profit for children with Autism. I had opened up about my eyesight and being legally blind with my Board President. The organization agreed to pay for cabs for me at night time, or when I was unable to drive. Once I began the job, I realized again that there was a gross mis-understanding of my eyesight. I bought a 32″ monitor for my office so I could see text. I would always get comments from coworkers about the monitor. I tried to explain that my eyes were failing, although people didn’t seem to believe or understand me. For some reason, there was a lot of resentment about monitor size at this particular non-profit. Again, I was faking it too well. I would tell people to call me or talk to me if it was something important. I could not manage e-mail like I had previously, and there just was no point in trying to keep up. I have found that about 10% of e-mail is truly important and needs attention. The other 90% will get resolved without any action within 3 days if left unattended. At the non-profit, there were a lot of fundraisers. I was the Executive Director and was always building and nurturing relationships. I remember an instance where a very prominent family became upset with me because they felt I was ignoring them at a fundraiser. The fact was, I hadn’t seen them. Once one of my colleagues explained to them that I am visually impaired, the situation resolved. However, it taught me well that this world can be very unforgiving for low vision people, unless you openly carry a cane or announce that you are going blind. Frankly, I was not accustomed to doing that.
I left the non-profit in May 2014. I had went to an eye exam for Social Security and my eyesight had tested at 20/400 and 15 degrees for a visual field. My eyesight was deteriorating at a more rapid rate than I had ever experienced in my life. I stopped driving as well. When I stopped driving, there really was no more faking it for me. It was over. I had no choice but to come out of the closet. I fought as long as I could to stay in the closet…..I thought that I had to appear normal to be treated normal (which actually is true in many circles and settings).
I had always loved running, and I began to wear a race bib that says “BLIND”. when I run. I have also taken a white cane with me to some races – I don’t run with it, but I show up with it at the start or in the dark times. I now have a website where I openly “admit” that I am legally blind. I do motivational speaking engagements about overcoming adversity by telling stories about being a blind ultra-runner. When I came out of the closet, I had one of the coolest experiences of my life. I suddenly was able to participate in the US Blind Marathon Championships and won. Then, TEAM USA took notice of me, and I was asked to join the team. I competed at the World Marathon Championships and took 4th . . . in the World! I’ve established many world records and have been the first blind person to do many running events. I’ve been on podcasts and have been able to help some fellow blind people find hope, by sharing my struggle with the closet. Those are the successes.
The difficulties have still been many. Not all personal relationships have adjusted as easily. I have found that some people cannot wait to help you, and ensure you do not feel like an inconvenience. I have had people offer to pick up me and my kids to ensure we are included in an event. I have also had people expect me to take my kids on a bus for hours to and from an activity so we could participate. I have had people stop and help me read menus at restaurants, I’ve also had people disgusted that I ask them to help me read a menu. I’ve had staff at doctor’s offices help me fill out new patient information worksheets, and I’ve had staff at doctor’s offices give me dirty looks and refuse to help me fill out paperwork. I’ve had racers who are inspired by seeing me compete in extreme endurance events (such as The Badwater Ultramarathon), and I’ve had racers question whether I really am blind. In Badwater, I was passing a racer and he asked me if I really was blind. Then, he asked what I had and asked me to describe how I saw. Then, he asked some pointed questions about symptoms. I later learned the guy was a physician, and I couldn’t understand why this guy was questioning whether I was really blind. Was it because a blind guy was passing him in a race, and that just isn’t supposed to happen? I have also had people in my life who I have faked being sighted with, then when I came out of the closet they failed to understand what I just told them – I AM LEGALLY BLIND AND DON’T SEE WELL. They just continued on failing to grasp what I just shared with them. They just plain old ignored that I told them “I am blind.” I don’t know how these people fit my life going forward. I hope with time they can accept me out of the closet, because I am not going back into that cramped space that I fought to free myself from.
As I experience hurtful situations, I sometimes wonder if it would be better for me to continue faking it. Without question, I always answer no. If I fake it, I make myself feel awkward so the other person doesn’t have to experience awkwardness. If I am true to myself, I can overcome that awkward feeling by telling the truth. If the other person feels awkward, well that’s their issue. Also, for the open-minded person I have a great educational opportunity. I should never feel ashamed that I am legally blind, and it’s OK to be and go blind. For all my friends who are in the process of going blind . . . . it is OK.
What I have learned from coming out of the closet is that you can be who you really are. Be true to yourself . . . and as my Mom always tells me – be gentle with yourself as you go through this.
Blind is just a state of mind . . . and remember, it is not your eyesight that defines you . . . . it is your Vision that defines who you are as a person.
Please share this with your friends and family. I hope this account can help others and their family/friends as they work through “coming out of the closet”.
Posted by Relentless Romero at 9:49 PM