I went from being too afraid to even leave my house that first year or so to challenging myself to do things I really wanted to do, even though I was blind. There are a few things I would like to still do; one is to ride on a motorcycle. There are some places I would still like to travel to. I have heard that they are working on a car that you don't have to see to drive. The minute that's a reality, I'm signing up!
My guest today is author and life coach, Michelle Friedman. Welcome to OpEdNews, Michelle.
Joan Brunwasser: Your children's book, Close Your Eyes [Abbott Press, 2013], was recently published. Why did you write it?
Michelle Friedman: I wanted to demystify blindness and disability by portraying people with disabilities in a positive light since there are so few positive images in books, TV shows and movies of kids with disabilities.
I've presented to school age kids on blindness and talked with them about how I live my life and what I do - I explain how much I do and how little I can't do if I want to, even though I can't see. But I wanted to find a way to reach a larger number of kids than just the local schools where I usually make my presentations, and at younger ages, and a book can reach out much further than just one person can.
I also wanted the book to be a catalyst for conversations on differences in a kid-friendly way.
JB: Many of our readers are not familiar with you or your history and I think that it's an important component of this story. While you are now completely blind, you started life as a sighted child. Please tell us what happened.
MF: When I was five years old, I had the measles vaccine. They don't give that one any longer. The next morning, I woke up very sick with a high fever. About six months or so after that, at a routine eye doctor appointment for school, I was diagnosed with uveitis, an auto-immune disease of the eye. Shortly after that, I was diagnosed with juvenile rheumatoid arthritis, also an auto-immune disease which tends to go hand in hand with uveitis.
Conventional wisdom at the time thought my condition was a reaction to the measles vaccine, but who really knows? And it really doesn't matter at this point.
My parents were told I would probably go blind. They had one real goal and that was to keep my vision through grammar school. As the years went on, By the time I was eight, I developed cataracts and later also glaucoma.
By my very early 30s, I had had about 15 surgeries . By the time I was 10, I had lost all the vision in my left eye and was considered legally blind. Gradually through my childhood and adolescence, I lost more and more vision. But, with the aid of surgeries, contact lenses, glasses, magnifiers and other adaptive aides, I was able to maintain minimal but functional vision until the age of 35. Even though I had no peripheral vision, couldn't see a darn thing at night and I couldn't drive, I still got around independently.
JB: You really haven't let these limitations slow you down though, Michelle, have you?
MF: Not all blind people are alike. I am amongst those who have absolutely no vision at all. I have no light or dark perception and I don't see shapes. I usually say I am blind as a bat but recently I was told that bats are not really blind. So, I'm not sure i can actually use that expression anymore which also means one of my best jokes just went out the window!
I not only got through grammar school but high school, college and graduate school and I had married and had two children. By the time I was 35, my cornea had begun to decompensate which simply put meant it was failing and I needed to have a cornea transplant. I went into the hospital for that surgery, in an attempt to save what little vision I had remaining. That surgery and the subsequent second attempt six months later both failed - probably because my eye had had so much trauma over the years that the cornea couldn't get the proper nourishment . I have been totally blind ever since, which was 21 years ago.
JB: You've mentioned the incredibly large number of surgeries in your childhood, each one involving yet another round of hospitalization, pain and recovery. Did you ever get tired of that routine and start to feel sorry for yourself?
MF: I did. There was a lot of trauma associated with having surgery back in those days. Hospitals and hospital procedures were very different and now seem even archaic.
As a kid, I had to do what my parents told me to do so I had the surgeries and went to the doctors. I can't say willingly or happily, but I went and did what I was supposed to do. Later, I got a bit more difficult. I was angry a lot and in those teenage days did ask that awful question: "Why me?" When I was about 17, I did refuse any more surgery, which was a whole other story. I was just tired of all of it, especially the shots, because I had become very needle phobic.
I really owe my parents a lifetime worth of apologies for being such a pain and for being so angry so much of the time. I've since redeemed myself. I'm the perfect daughter now - well, almost. But I definitely had some angry, resentful years in there.
JB: One nice thing is you haven't lost your sense of humor. I bet it's served you well over the years. What was your social life like as a kid? How did your eye problems affect making friends?
MF: My sense of humor has served me very well over the years.
To answer that question I have to give you a little context. I went to a small parochial school where we all pretty much knew each other: our parents were friends, we went to the same synagogues, and most of us were in school together from nursery school all the way through high school. We didn't have terms like special needs back then. I was the only kid in the school who was "different' and the only student who needed special accommodations, even though they didn't use that word then, either. I missed a lot of school between doctor appointments, surgeries, etc.
I did have special needs. There were times I needed to sit practically on top of the [black]board. I needed to use magnifying glasses in class sometimes. I needed tutoring and there were even times I was brought up in front of the class and the teacher had everyone wish me good luck before surgery. To this day, all that attention as a child who just wanted to be like everyone else makes me cringe.
So, did I have friends? Sometimes, my friends were better to me than other times. Kids will be kids and even my friends got into the picture if there was some teasing or kid shenanigans going on. But for the most part, I had friends and I can't say I was ever excluded from things.
I was very aware of my differences. I certainly didn't want to be treated differently or special or have the spotlight on me for my differences. I knew there was possible teasing lurking around a corner, so I think, in an effort to protect myself, I put some distance between myself and my friends. I really don't think I let people get as close to me as other kids did because I felt like there was potential for danger in that.
I did have one best friend I was very close with until the 7th grade, when she and her family moved to Israel. But I was always cautious. I did all the things my friends did and I went to the parties and there were times that I was certainly more popular than others, but I never developed those really close life-long friendships that my siblings had from their grammar school and high school days.
I was different and my experiences were different and I wanted so much not to be different that I think I held back.
I can remember being very envious of the close friendships - and boyfriends - my siblings had. I did have friends and there were even times I was in the "A'' crowd. But I was always vigilant to when I would be excluded, so I think I may not have been the most open to real friendships. I felt a little like I had a target on my back and who wants to put themselves intentionally in harm's way?
The upside that now, as an adult, I am someone who is very comfortable with who she is. I have developed a network of very close wonderful friends whose friendship I cherish. They know absolutely everything about me - I am an open book. I'm so open, the words practically fall off the page!
JB: What did it take to make that crucial transition from that more cautious and withholding kid to the open and loving adult you are now?
MF: I had to think about this question for a while.
I think it was actually a process. As I said, I didn't like was being different. I also hated needing help and having to ask for help because it highlighted my differences and in some ways made me feel inferior - my own perception, not necessarily based in reality.
I think the progress started when I graduated college and moved into my own apartment and started my career. I began to feel more independent and self-sufficient and like other 20 something year olds. Then, I got a job at an independent living center in Chicago as an independent living counselor for the disabled. Almost 100% of the staff were young, "cool' disabled people who were working, living on their own, having relationships, involved in disability rights. And for the first time, I was amongst people I wasn't different from, in a world where I wasn't different. My concern at first was that maybe I wasn't disabled enough!
I became friends with people who were disabled, some more severely than others; all were living independent, fulfilling lives with their disabilities right there for the world to see. Now I had friends and we had our various disabilities in common. Outside of work, at home, in my neighborhood, amongst my family, though, I still did try to "pass" as not disabled. I developed a level of confidence and positive self-image that included my disability at least in part of my life. It was a start.
While I was working full time, I also went to graduate school but my life did have a kind of split personality. At work by day, I was disabled and embraced my disability. But then at night, I would leave to go to school where I worked very hard to not be disabled. And at various times of my life, depending on where my vision was at, I was more able to fake it.
I'm embarrassed to say that in grad school, there was a blind instructor who I actually kind of knew and I tried to avoid him and was even a little embarrassed by him and didn't want to be associated with him by our mutual impairments.
I remember a time when they had done some reorganizing of the classroom and somehow he wasn't aware of it so he ended up talking to the room as he usually did but the entire class was sitting to the left of where he usually lectured, so he was essentially talking to a bunch of coats hanging in the room.
I wanted to to crawl under the table because I didn't want to be in that kind of embarrassing situation. And although I would help him when I saw him trying to get to the bathroom or something, I was just like any other sighted student helping the blind guy.
So, you can see my split personality on this.
But, then I married and had children. I was pretty independent with my kids we walked or took buses everywhere we had to go. The real change for me happened when we moved to our second house in the neighborhood we live in now, a suburb of Chicago.
My oldest son was about to start preschool and a friend of mine from college had a niece in the same class and my friend asked her sister if she could just include us in her carpool because I didn't drive. She did and people kind of knew that I didn't drive because of my vision. Our synagogue had a program where a family adopted a new family and the first day, our adopting family picked me and our kids up for synagogue we had to cross a very busy street. I was having a little trouble and I also didn't want to blow this chance to start making new friends in our new community. So, I told her I had some significant visual problems.
Twenty-six years later, the women in that carpool and the woman I walked to synagogue with are amongst my dearest and closest friends. Soon, because my vision was decreasing, I knew the jig was up anyway, so I asked for the help I needed. I was very conscious of not abusing people. For example, my husband worked full-time out of the house those days and couldn't participate in carpool. So, he drove to every single Sunday birthday party or after-school thing.
I don't think that I ever took the help for granted. It just didn't serve me anymore to keep my condition a secret if I wanted to be a contributing member of my community. I have always known I could count on my sisters and my parents but I had to learn to trust other people. So, I decided to take the risk and be honest and open and it has paid off a hundredfold. I am blessed to have the most supportive family and friends. I've come a very long way - from being cautious and not wanting anyone to know about my disability and, for sure, not wanting help - to the me now. I will ask anyone for an arm. I'm totally comfortable with who I am as a disabled person and the greatest compliment my friends can give me is when they shrug or wave or point to something and say, "Oh my G-d, what am I doing?" and we have a good laugh!
JB: Tell us a little about your professional life, Michelle. What did you study in grad school and what have you done with it subsequently?
MF: My graduate degree is in counseling psychology and, as I said, I worked for access living, an independent living center for the disabled in Chicago. When I had my first baby, I just couldn't leave my baby, so I became mostly a stay at home mom. I did some volunteer work and a little private counseling from home once my two oldest children were in school. But, for the most part, I began my long career of volunteering on boards and doing fundraising for organizations around that time.
Shortly after I went blind, I discovered I had a very small window of opportunity to get my license as a therapist. Unfortunately, I was going through a really tough time. It was long before exams were routinely computerized. I was just learning how to use a computer and I needed the adaptive equipment and screen-reading programs that blind people require to use a computer. Also, in those days, the study materials [and the exam] were not in an accessible format. I did not have the energy, confidence or personal strength to advocate for what I needed to take the exam, so I missed that window of opportunity to get my license which meant I could no longer practice privately as a therapist.
I gave up the idea of working and thankfully, all the organizations i was involved with saw value in what I was doing and never flinched at my continuing to fundraise and serve on their boards.
About six years after I went blind, I found out I was pregnant again. Once my youngest son turned two and started preschool, I felt the need to be doing something with my career. I was in a much much better place emotionally around my blindness and in terms of learning how to use computers and all the adaptive equipment available to the blind. I began looking for ways to get back into the mental health world and generate some income for our family.
This was just around the time that coaching was becoming popular. Coaching incorporated working with people, which I was craving to do again. It complemented the style of therapy I did and many of the coaching programs were done on the phone, using bridge lines. I didn't have to deal with transportation getting to and from, figuring out how I would deal with childcare and could still be home when my kids were home. I began taking classes over the phone with a coach training program that was designed for psychologists, social workers and therapists.
I loved it! It was the perfect fit for me in every way and I fast-tracked the learning to get my certification as quickly as I could.
I was very lucky. At the same time I was growing my coaching practice, the program that I was certified by asked me to teach for them and I became a coach trainer - also a perfect fit. Again, everything I did related to my coaching practice and teaching was from my home with my equipment and adaptive technology and that was perfect.
Don't get me wrong. It isn't like I never left my house. I absolutely did; I was still very actively involved in my lay leadership roles and certainly had a busy social life but where work was related, I was able to do everything from the comfort of home.
When the economy took a nose dive, I found my practice starting to struggle a bit. People didn't have disposable income to pay for coaches. At that same time, the high school that I had been on the board for many years of and served as their fund raising chair asked me to serve as the president of the board. Once I picked myself up from the floor from the shock, for three years I put a lot of energy into that which put working on building and maintaining my coaching practice a little bit on a back burner. Now, several years later, I am president of the board of a different organization and maintain a small private practice. I'm now putting a lot of time into getting the word out about my book and getting myself into schools to talk to kids of all ages about blindness and disability. I'm loving it and finding it meaningful and I believe is what I'm supposed to be doing.
And somewhere in the middle of all that, I have a few hobbies that i try to squeeze in.
JB: Like what?
MF: I have been dabbling in ceramics for the last seven years and took up knitting a few years ago.
This past summer, I started really gardening and even built, with the help of a good brave friend, my own raised boxes with the most awesome power tools.
I loved it and recently that same brave crazy friend was showing me a lovely dress she made her granddaughter. I naively asked if she would make my granddaughter a dress to which she said, "No, but I'll teach you to sew" so off we went to buy patterns, material and a few things to adapt my sewing. And I've sewn a few things for my kids and my grandkids. Far be it for me to pass up a challenge!
It's sort of how I've decided to live my life these last 20 years, once I got over the first year after I went blind and had a mini breakdown.
JB: You've definitely rebounded, Michelle. Share with our readers some of your adventures since then, please.
MF: You have no idea! I actually went from being too afraid to even leave my house that first year or so to challenging myself to do things I really wanted to do even though I was blind. I had never skied before I went blind. I regretted that I hadn't, especially when my friends talked about skiing with my kids. So about nine years ago, I decided I was done wishing I could ski. On a family trip when my kids and friends of ours were going skiing, I decided it was time. I asked at the ski place if there were instructors who had some experience with blind skiers and fortunately for me, after a little waiting, I had the opportunity to learn to ski and then ski alongside a sighted guide skier.
It was fun and I was so glad I had done it. But skiing wasn't my thing; I actually don't like being cold.
What was my thing, though, was horseback riding. I had done it before I went blind. I had a friend who was an equestrian and I felt so envious of her that she could ride. Then, she mentioned to me about these therapeutic equestrian programs for disabled kids. It got me thinking and I found one about 45 minutes from my home. I took riding lessons once a week for about two years. Although I loved it, I was getting very close to 50 and when my friend took a dangerous tumble, I realized that my progressing with riding made it fairly inevitable that I would fall. My fear of hip surgery outweighed my love of the riding and I "hung up my saddle' though I have ridden a time or two since then. But that was an aging fear, not a blindness fear.
Challenging myself to do those things led me to need to find the next challenge. I have always thought I would want to parachute out of a plane. When my husband and then 12 year old son were on a vacation in Florida a few years ago, my son found a terminal velocity place. It's just like sky diving but it's indoors and no plane. The skydivers who are getting certified actually go there to put in their hours because it is cheaper than renting a plane.
So while we were signing up my son, I was drooling at the thought of it. I asked and indeed they had no problem except they wanted to give me a little extra orientation. So after getting suited up in the skydiving garb, we had to go up in this building. When everyone is in, they close the doors and a bell goes off to tell you no-one can come in or leave. I turned to my 12 year old who was practically jumping out of his skin, he was so excited. And I said, " I can't do this; I have to get out of here." But, when my turn came, I got up and walked to the edge of the deck and jumped into basically 120 mile an hour winds and skydived for a full minute. I don't actually know how high up off the ground I was but the wind is blowing from these enormous fans and you have no choice but to float. It was an unbelievable, exhilarating feeling and I'm so glad I didn't give in to my momentary panic. I had a lucid moment and realized I could not do this to my adolescent son. I said to myself, "What is the worst that can happen? And once you have done it, you will be glad you did it."
JB: Admirable sentiment, but definitely easier said than done! What else?
MF: I've taken sailing lessons and this past summer on a trip to Israel, I did something I have wanted to do for a very long time. My husband and I took a hot air balloon. No-one could really understand why I wanted to. After all, the big part of it is being up that high and floating over the countryside" after all, what does the view do for me?
It certainly wasn't about the view, although our guide did describe in great detail what part of the Israeli countryside we were traveling over and what we were seeing. But it was really about doing something that I never would have considered doing that first year or so after I went blind, something that requires a total letting go of control. And although the risk is minimal, something that isn't 100% safe like sitting in my rocking chair at home and challenges me to get out of my comfort zone.
The one thing about that is, the more you get out of your comfort zone the harder the next thing needs to be to continue getting out of your comfort zone.
JB: At this point, is there anything left on your To Do list, Michelle?
MF: There are a few things I would like to still do; one is to ride on a motorcycle. And there are some places I would still like to travel to: Italy, Gibraltar, Prague, Greece. And the one really, really, big thing I would love to do is drive a car.
I learned to drive so I did drive a bit although I never did get my license. The ultimate would be taking a long drive on my own on a long highway in a convertible with the top down. Ultimate independence and freedom and ultimate dream come true!!
I have heard that they are working on a car that you don't have to be able to see to drive [it drives itself]. The minute that's a reality, I'm signing up!!
JB: I don't doubt it for a minute! It was really fun speaking with you, Michelle. Honk when you're in that convertible heading out on your road trip!
Thanks to Meryl Ann, Ross and Evvy for editing suggestions.
Joan Brunwasser is a co-founder of Citizens for Election Reform (CER) which since 2005 existed for the sole purpose of raising the public awareness of the critical need for election reform. Our goal: to restore fair, accurate, transparent, secure elections where votes are cast in private and counted in public. Because the problems with electronic (computerized) voting systems include a lack of transparency and the ability to accurately check and authenticate the vote cast, these systems can alter election results and therefore are simply antithetical to democratic principles and functioning.
Since the pivotal 2004 Presidential election, Joan has come to see the connection between a broken election system, a dysfunctional, corporate media and a total lack of campaign finance reform. This has led her to enlarge the parameters of her writing to include interviews with whistle-blowers and articulate others who give a view quite different from that presented by the mainstream media. She also turns the spotlight on activists and ordinary folks who are striving to make a difference, to clean up and improve their corner of the world. By focusing on these intrepid individuals, she gives hope and inspiration to those who might otherwise be turned off and alienated. She also interviews people in the arts in all their variations - authors, journalists, filmmakers, actors, playwrights, and artists. Why? The bottom line: without art and inspiration, we lose one of the best parts of ourselves. And we're all in this together. If Joan can keep even one of her fellow citizens going another day, she considers her job well done.
When Joan hit one million page views, OEN Managing Editor, Meryl Ann Butler interviewed her, turning interviewer briefly into interviewee. Read the interview here.
While the news is often quite depressing, Joan nevertheless strives to maintain her mantra: "Grab life now in an exuberant embrace!"
Joan has been Election Integrity Editor for OpEdNews since December, 2005. Her articles also appear at Huffington Post, RepublicMedia.TV and Scoop.co.nz.