Tip #7: Seek Out Mentors

My very first mentor was an attorney from Utah.  Mormon.  Married, with children and grandchildren.

I was a 24-year-old teacher from the Midwest, entering a Master’s program, newly married and just on the cusp of adult life.

Our one thing in common?  Retinitis Pigmentosa.

We were at the National Federation of the Blind’s annual conference (link in Louisville, KY, where I was among a handful of scholarship recipients.  As part of their scholarship program, the NFB pairs students with different mentors each day.  This was the 4th and final day of the conference, and I had been paired with Ron Gardener, a name that carried some notoriety, as I had heard it spoken respectfully over the past few days, and as his wife, Jan, had been particularly welcoming and kind to me during the scholarship photo shoot and speeches.

I had enjoyed the time with my previous 3 mentors, and loved hearing about their successful careers.  They were all polite and helpful, yet I had the sense that they were each simply fulfilling a duty as assigned mentors, exhibiting mild interest in me and my future.

Until Ron.

He and Jan made it immediately clear that they were taking me in as an adopted member of the Utah chapter of the NFB, inviting me into their circle of friends and family, letting me tag along to restaurants, walks on the pier and 4th of July fireworks.  He was an instant father figure, warm, funny, and completely competent.

Looking back, I think I held a special place in his heart because he saw how much I struggled, and it reminded him of the way he used to struggle.

“I can’t help but notice you have a very hesitant, visually impaired way of walking,” he told me, as we walked along the pier together that 4th evening of the conference.

Typically, a comment like this would have ensued a certain sting, but I could sense the gentleness in his voice and the intention behind it.  Plus, I knew what he meant.  The way he and a few others moved about with their canes, fluidly and carefree, even with far less vision than me, made me realize how unskilled I was in the area of mobility.  Ron asked if he could help me with some of my cane techniques, and I of course agreed, relieved that I would not only be getting lessons from a blind person, but a very skilled one.

He not only assisted me with mobility, but he also sought out connections, introducing me to people my age who he thought I’d relate with, one whom I am still friends with today, 15 years later.

The greatest impact Ron had, however, was his simple assurance that I would be ok.  I still remember him leaning over to talk to me in the large auditorium on the final evening of the conference, during one of the speeches.

“You know, with RP, you’re going to lose more vision.”

Thanks for the reminder, I remember thinking.

“I know,” I replied casually.

“I remember when I was your age, and I really didn’t think it would ever catch up to me.  I tried to hide it as it declined and ignore what was happening.  I thought I was fooling people, but I was really only fooling myself.  it was so tiring, trying to hide it all the time.  You look normal, so you think you’re fooling people, but they can tell something is off.  They can see you reaching for door hinges instead of the handles, tripping over curbs and missing outstretched hands.”

At the sound of these very specific examples that I knew were as true for me as they had been for him, I felt exposed, and my face grew hot.

“Your vision will get worse, Joy. And you will be ok.”

For some reason, I needed to hear both those statements, said together just like that.  I knew both of those statements could be true on their own, but I didn’t realize they could be true consecutively.

I know he said other encouraging things after that, but I really just remember him asking Jan to get me a box of kleenex and that he was sitting next to me, proving those statements true.  He had lost nearly all of his eyesight.  And he was ok.  He was more than ok.  He was successful and adjusted and happy.

Ron is someone I have continued to correspond with from time-to-time, e-mailing or calling once or twice a year. When he has traveled to Chicago on business, my husband and I have gone to dinner with him, and his wife and I have also e-mailed intermittently.

They are now retired, full-time missionaries overseas, so we don’t connect quite as often, but their presence through the pivotal times of my struggle with RP has been profound.

I think mentors are particularly important for teenagers or those getting ready for college or the workforce because there are so many unknowns and so much change taking place.

For young children, I think simply exposing them to competent role models who are blind, whether that means reading them interesting books about accomplished people with vision loss or showing them positive interviews or movies depicting capable protagonists, is helpful.

Several people have found me and my sister via our blog, and I thoroughly enjoy meeting with young people, especially those struggling to accept vision loss the way I have.  This is probably the proper place to point out that a mentor relationship works most effectively when the mentor is at a place where they can encourage and challenge the person they are mentoring, and this isn’t always age-related.  For example, a couple years ago I met with a 16-year-old girl who was already adept at using her cane in public, while I was still struggling to pull mine out even though I had far less vision than her.  I honestly did not have a lot to offer her.

Since then, I have met, both in person and via e-mail,  people who still struggle to tell friends about their vision and have found courage from my sister and I’s stories. I find I have more to offer these people because I can remember what that was like and can encourage them to move forward while also respecting the place they are at.

One of my good friends, Louise, who Ron introduced me to years ago, also has RP, but has been using her cane and other assistive techniques full time for the past 15 years. Even though Louise and I are the same age, with around the same vision, she has acted as a mentor for me because she is able to challenge me further in my journey of acceptance and accessibility.  Through her stories and advice, she has been instrumental in shaping my view of what it means to live daily with vision loss without shame and to view blindness as a minor challenge as opposed to a major flaw.

After reading and connecting with my “Locket” and “Free” posts, Louise sent me a text one Saturday evening:

“Hope I am not texting too late. just wanted to remind you of how liberating it was to take your cane to church on Easter Sunday. Will you be taking it again tomorrow? You can do this! :-)”

She has sent several similar texts since then, and they have all left me feeling supported and empowered, just as Ron did in Louisville back in 2003..

I know I am not the only one Ron has mentored, and I have had several influential mentors in my life, but he is definitely the one who first assured me that I would be okay, sighted or blind.

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3 thoughts on “Seek Out Mentors: Advice for Parenting Children Who Are Blind or Visually Impaired Tip #7

  1. I’m so pleased to have discovered your blog. I am 48 and have RP. So does my brother and my dad. I’m not sure yet which of my three kids might have it. Many thanks for your commitment to keep writing

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