They are out there but they aren’t sending a search commitee looking for you…
I was about 44 years old when I went kicking and screaming to my first blind support meeting. It took a panic attack and 3 years of therapy and a lifetime of denial but it finally happened. My therapist kept saying gently that I should do this. She gave me contact info, meeting times, the whole works. I wasn’t having any of it.
I was with that therapist for about 3 years before she finally convinced me to try. She brought it up gently early on and kept coming back to it from time to time. She did great. I was seeing her in the aftermath of a panic attack that led to anxiety diagnosis and medication along with those visits to her office. I’ve learned we pretty much all deal with some kind of emotional or psychological issues and they are unique to who we are and our history. Mine were, in no particular order, self loathing, shame, anxiety, and depression. If that’s how you feel about yourself, if you are ashamed of who you are deep down to the core, why in the hell would you want to be around other people like you? In my case, that meant blind people. The stem of my shame and self loathing was that very deep belief that I was worthless because I was blind. I used to deny this, I used to try to ignore my blindness, I tried to pretend it was not a problem and do whatever I could to get by in the sighted world.
My memories up to that point of dealing with other blind people were not good, and of course clearly colored by my own self loathing. I’ll get to that later but put yourselves in the shoes of a young person in denial of who they are and trying to hide who they are from everyone. I was also trapped between two worlds not really understanding either one in my early teenage years to early twenties. Everyone around me was operating in a sighted world and I could mostly do that so I just covered up when I couldn’t and suffered quietly. I didn’t want to be part of the blind world because of my shame and in many ways that world wasn’t right for me either since I didn’t need Braille or a cane yet.
The first thing I think about when I look back is how I was handled in the school system. I had to leave regular classes and go to a resource teacher. I had to ride the short bus. These were huge stigmas. You knew there was something wrong with you and the others who had to do these things and you didn’t want to be there. That’s what society told you. Being partly sighted and pretty independent, it was easy to recognize those with a lot more need and to associate yourself with them or to not want to be around them. God bless them all and I hope you understand what I’m writing here and don’t think less of me.
I wanted to be with friends and family. I wanted to play video games and read comic books and watch tv. My family would get approached by a group trying to get me to go to blind camp or the school for the blind or blind bowling or blind skiing. We did go to blind bowling a few times, but mostly I just remember recoiling at all those kind hearted offers.
I had one friend who was blind. He was a few years older than me and he was a huge Muppets fan. I am sure someone was trying to get us to be friends or to get him to mentor me. I liked him but I didn’t like his blindness. I can remember thinking that I wasn’t like him so clearly.
I remember getting out of high school and going to vocational rehabilitation. I was not ready for college, I was not ready to take care of myself on my own, and now here was the weird place that normal people did not have to go and it pushed all those self loathing buttons. Good things came from there as I got a year of college paid by the state of ND, but I strongly remember feeling hopeless there. The jobs that were suggested were sweeping and cleaning and other menial tasks. There was talk of the school for the blind training as well, but mostly there were really low expectations from the voc rehab people and from myself.
Those were all the outside factors. The strongest memories are of my family. Let me just say something to be clear. Everyone in my family loved me. Everyone wanted only the best for me and the things I write here are not criticisms. They acted from total love and a desire to protect me and help me have the best life I could have. Sleepless nights, endless trips to doctors, terror over the next surgery, and so so much more made life a seemingly endless trauma. What I am writing next shows that even with love, the mind can take away such dark stories. My grandparents, especially my grandmother on my dad’s side, gave me an overwhelming sense that appearance was critical. It wasn’t just that I wanted to be sighted, it was that they wanted me to pass as sighted to meet societal expectations. Another example is that I would occasionally knock over milk glasses or other things and I would be told often in joking ways that I was stupid for doing it. I developed an underlying belief that eyesight was tied to intelligence so I knew on some level I could not be smart or expect to be. We eventually went to a practitioner who fitted prosthetic eye coverings over dead eyes. My left eye is my blind but it has never been removed so the goal was to create a second eye that looked like my right eye to help pass as sighted. This one is very delicate because on many levels this is actually a very kind idea but at the end of the day it’s just another way of saying that I shouldn’t let people see who I really am which only further feeds self shame. I can’t imagine the burden of a blind child on my parents and family and I got incredible love and care, but this feeling of denying who I am came from being shown that people would think badly of me so it was wrong to be who I was. It’s very complex and confusing and not something a young kid, let alone young parents, is going to figure out.
With all that shaping who I was,why would I want to go to a support group with other blind people? I believed blindness was shameful and needed to be hidden and that anyone who was blind was not someone you wanted to be around. I didn’t want to be around myself when it came to blindness. This feeling was so strong that it even led to avoiding taking care of myself by not following through on doctor’s appointments once I was an adult and responsible to do that myself. There was a long period when my sight was pretty good from early 20s into my 30s so I stopped going to check ups, lost my regular doctors, and when things started to go downhill found myself deep in a hole not knowing who to turn to.
I finally decided to check out a local support group. I couldn’t tell you what tipped me to do it but it happened. The meetings were held at a nursing / retirement home and at first glance, they were mostly what I expected. The group seemed to have 8 or 10 regular attendees who were mostly older than I was. Several of them seemed at least as unhappy to be there as I was or maybe just unhappy with life in general. The group was welcoming and inviting and offered information and had speakers. I went to several of these but I felt very out of place and was not finding what I was looking for. What was I looking for? Now that’s a real good question that I had no answer to. I suppose common experience, sharing difficulties, advice, I’m not sure entirely but I knew I wasn’t finding it. Part of it may have been that I was much younger than most attendees. I want to make it clear everyone there was very kind to me and there were a lot of good people so if they read this I hope I can make that point very very clear. A lot of those early days were all about my own resistance and not about them at all.
I began to realize that I was out of element due to a lot of factors. Life experience with blindness and how others had handled it was a big one. There were a lot of folks with life long skills and training I did not have and I believed I did not need. There were a lot of folks with a lot less income than I had at the time, which is absolutely fine, except that it made it hard to relate over things like new cell phones or other technology. Those were big factors, but not the bottom line.
The truth is that all of it, from the beginning, was colored by my own mistaken beliefs. I hated myself for being blind and thought it was a terrible thing and had set extremely low expectations for myself and my life. Everything I encountered was colored by this simple fact. I could have made the most of those bus rides and probably helped those around me do the same. I could have brought self confidence to voc rehab and seen it as a pathway to better things. I could have gone looking for my people decades before I did. My beliefs were shaped by all kinds of experiences, almost all of which were unintentional consequences of people who were trying to help me and those tendrils of darkness we call depression.
I started finding my people just 5 years ago after 44 years of denial. In that time, I have gone from terrified to even set foot at a group meeting to all kinds of accomplishments. I am a board member of the National Federation of the Blind of North Dakota. I’ve been asked to come speak at the NFB state convention in New Mexico. I’m writing a blog about my experiences. As a board member, I’ve taken on roles as a communication coordinator and a fundraiser. That’s after only 5 years. I don’t regret a single moment of time up until that day I walked in. That part of my life is my story and I own it and better yet I get to share it. It only matters now as a set of lessons about how to get to live the life you want. Finding my people gave me a whole new perspective shaped from common experience, it changed my perspective on what had come before, and it gave me a belief in myself that I had lacked.
I’ve got lots of other people as well. I’ve got a beautiful wife and brilliant step daughter and hilarious dogs. I’ve got fellow comic fans, fantasy football players, board gamers, business partners, retailers, and so so much more. Some of them were easy to find and some were not. I got married at 49 years old and I wonder if that would ever have happened without the self recognition that has come with finding my people…
Always Early 