Ben Fox: Beyond My Personal Battle with Retinitis Pigmentosa

This blog post is part of a series of storytelling pieces, “Beyond My Personal Battle”. The interview-based series is dedicated to sharing an inside view of individual lives working to grow and thrive beyond the diverse challenges of illness or disability. Interviews are conducted by Mary Brimmer.

What is your name and where you are from?

My name is Ben Fox. I’m 37 years old and am originally from Salt Lake City, Utah. I have lived in Tokyo, Florida, Mexico, Colorado… and Phoenix, Arizona where I live now.

What kind of condition are you living with?

I have Retinitis Pigmentosa, on top of having really thin retinas. In my early 20’s I had a few eye surgeries for retinal detachment. I’m always encouraged to keep an eye on my eyes. I didn’t see any doctors for a few years because I was holding onto my driver’s license. Driving is a touchy subject in the RP community.

On the subject of losing independence, would you say you were in denial?

I was definitely in denial about it, and avoiding it, too. It’s a very sacred time in someone’s life when they hang up the keys. The loss of independence is a real thing. Depending on your lifestyle beforehand, you’re going to need to learn a new one. It’s like rewiring your brain to feel comfortable in different settings. I was a former journalist, and body language is huge. For example, with Retinitis Pigmentosa, I can still make out someone’s face but I’m missing all of the hand gestures and body language. It changed the way I do business, who I do business with, and my confidence level.

I actually didn’t leave the Phoenix Valley for two years. I love to go places and am usually traveling every six months, but I didn’t go anywhere for two years. I am now back to traveling and I’m excited to tell you about that, but it speaks to independence lost and then found again.

What do you think changed for you with confidence?

I first lost my confidence when I realized I was starting to miss things that I would have seen In the past. Like someone says, “Oh hey, there was a friend in the corner of the room for the past two hours and you ignored him.” I’m like, “What?! There was? You’re kidding me.” Finding out that someone had waved at me and I didn’t acknowledge them. Stuff like that made me realize there could be so much else I was missing, and I got lost in those kinds of thoughts.

The thing that finally helped me is to develop a “Why” – a reason why I should get up and out. For me it really came down to the fact that I want to have a family one day and I couldn’t justify this time off for my future family. This became a powerful “Why” for me. I had to assess where am I right now and what can I do to get where I want to be. That’s kind of what I’m doing now and what has helped me find my confidence.

Your “Why” is about love and family. How has your condition impacted that, specifically?

When I was married I didn’t totally understand what was going on with my eyes. The doctors had told me prepare for total blindness. So I thought, “Okay I can’t have kids”. I was having a really hard time getting around, and put off having kids. It was a hard time in my life. My grandfather died, and he was blind when he died. He tried to hide it his whole life. He had children they all have eye problems, and their children have eye problems.

It came full circle for me when I met a Japanese man who has RP and his son. I got to see the interactions he had with his son and his wife who drives him everywhere. He can’t play catch with his son, and that for me was a big deal. But the kid was happy and the dad was happy. Still, being a blind father terrified me. I didn’t want to put this on anybody else. [We hear] things on TV like, “they have too much baggage.” That’s difficult because if you have a chronic condition, some people would use a term like baggage. I certainly wouldn’t.

So that’s a stigma of chronic illness...that THEY HAVE baggage.

Right. Thanks for saying that so I don’t have to. But I think the important thing to remember is that people without chronic illness also have “baggage”. Perhaps sometimes more. The people that come around and stay around are the best quality people. That is one of the best blessings about blindness, it really is. If someone can truly have a good attitude about their partner’s chronic illness, they found something inside themselves and I really appreciate that. It’s rare, and a blessing in disguise.

now that you see the blessings, Do you feel like your condition is something you would change?

I decided recently I wouldn’t change it. I really, really wouldn’t change it. I was at a bar in Atlanta recently and this guy asked if I couldn’t see. So I had this opportunity to talk about blindness. After we talked and got to know each other, he kept apologizing for asking about my blindness. I said to him, “If I wasn’t blind or almost-blind, what are the odds you and I would have talked at all? We had just had an hour of awesome conversation. Would you have opened up to me the way you just did if I didn’t have a story?” He looked at me smiling and said “No, I absolutely wouldn’t have.” I have met so many interesting people.

What can you say about the ups and downs of acceptance?

I’ve learned to respect the down times and that they are a natural part of the journey. You can’t appreciate the ups without the downs. If I didn’t have some of the downs i've had, I wouldn’t have had some of the beautiful moments in my life relating with other people.

How do you pick yourself back up from the downs?

The best way to get up from the down is described by a quote that I wish I had come up with: “Friends are those that remember the song of your heart, even if you’ve forgotten the words.” So to me, I have a great support system and my closest friends. Really none of us have ever been down at the same time. If for some reason a couple of us are down, we have a small close group. There are really good people out there, and the more you talk about your condition, the more you find the really good ones.

I have a lot of fun going out and about now but I can get lost really easily, so people often ask “Can I help you, sir?” And I say “Yes, I’m legally blind and could you help me get to the door, I can take it from there” I’m just so grateful for people, and this is an important thing i've learned in my travels over the last few months. I knew this before, but now I believe it – life is a mirror and it will show to you what you show it. There are going to be people out there who are not friendly from time to time, but they will be far outweighed by people who are. If you put a smile on, more often than not, people will smile back.

What is some advice you’d like to give others?

If I had a tip for people it would be to have empathy for people in your support group because it will actually benefit you in the end. That realization was huge for me. People become your support network, not because they feel bad, but because they want to be... and that’s a beautiful thing. Having empathy for them makes your whole life blossom and accepting they are your support network is huge too. We should honor them.

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