Timothy Chambers: An Artist with Usher Syndrome

The following excerpt is shared from Timothy Chamber’s website, 17 Degrees–Timothy Chambers Story.

Did you know that a hawk’s range of vision spans approximately 290 degrees?

Talk about seeing things. No wonder a field mouse has no chance when in the hawk’s sightline. A hawk sees a whopping 60% more than you (humans have a visual field of 180°)! Dogs and cats have 240 degrees, about 40% more range than us two-leggers.

Among people, artists are blessed with better vision, musicians with better hearing…. right? Not really, and sometimes far from it. Beethoven was deaf, Monet had cataracts. And I am also exempt from the great-vision-artists’-club, as my visual range is a tad less than yours by about 160 degrees, coming in at 17 degrees- less than 10% of yours. In fact, I am considered legally blind since I fall below the government’s minimum threshold of 20 degrees.

The funny thing? I earn my livelihood as a professional portrait artist, which my dad calls the “king of art genres” due to the difficulty of truly capturing a person. God surely has a sense of humor. A guy with less than 10% of normal vision earning his living doing something as precise and challenging as painting portraits. Crazy.

I am Tim Chambers, professional artist and founder of Iguana Art Academy.  I am a legally deaf and blind artist. This is my story- my journey from aspiring young artist to being told I had a disease that would render me deaf and blind, and the journey that followed. 

I’ve been a full-time professional artist for thirty years. I have been around art my whole life, as my dad, William Chambers, is also a professional artist (williamchambers.com). I made my career choice by the time I was three, coloring in the shadow of my dad’s easel. I love art. I can’t imagine being anything else. It’s how I process thoughts, take in everything in life. I think visually. I speak in word pictures (my hands are never in my pockets).

Yet, with less than 10% of normal vision, it’s common for people to ask how I can paint when I see so little. Actually, I probably see more than most people. Although I lack peripheral vision, I can see what I am looking at, and for an artist, that’s a great place to start.

Being a painter is more than merely recording what we see. Seeing also involves the heart and mind, and then comes the execution of applying that vision to canvas. A camera records objectively, without passion, without a past, without heart. “Anything under the sun is beautiful if you have the vision; it is the seeing of the thing that makes it so,” taught American painter Charles Hawthorne. I agree.

I was diagnosed with Usher Syndrome right when my career was ready to go into orbit. It terrified me. It’s been a journey fraught with fears, understanding, and growth. As time passes, the miracle of painting with diminishing vision grows, as does the curiosity. People want to know my story- how I can paint at such a high level, and press on with enthusiasm in life, in spite of having such little vision. Especially after watching me bump into a stranger, have a face to face meeting with a pole, trip over my dog (poor girl).

I painted a color study of the same church, but with the sun behind the building (on the right). The result is what my eyes see without the glare of the sun directly affecting me.

It took me a couple of years to deal with the news of my eye/ear disease. My worst fear was that I would lose my sight and hearing completely and be relegated to an easy chair in the living room, waiting for someone to come and check to see if I was still breathing. I feared that my life would become meaningless and that I would have nothing to offer, no reason to exist. I feared that I would be forgotten, dismissed, losing all dignity,  a mere inconvenience in the lives of everyone else. It was a deep fear, and it would take time for me to release it and trust that God truly does have plans for a hope and a future for me even if I was exiled from what I thought was good and normal.

The original diagnosis (“Find another profession.” ouch!) played mercilessly in my head, paralyzing me at times. In fact, I didn’t get a full night of sleep for almost two years due to waking up in a cold sweat, fearful of what lay ahead. After a few visits to our family physician following panic attacks, fears of other diseases taking over, he told me that the health fears taunting me resided in my imagination. He said “Tim, this is an issue of faith and trust. You’re healthy. Go live.”

Breathe. Trust. Live. Repeat.

It wasn’t until I began to take my physician’s advice and choose to live that I began to push back the fear.

Part of the process was facing it. But face what, exactly? I began to articulate my fears. We can fight a visible foe a lot better than an invisible one. 

I also began to apply this on a spiritual level. Did I really believe that God is greater than everything, including my disease, and all my fears? When I settled that with an affirmative yes, I began to move past the fear. Either God is, or he does not exist. There is no other option.

I recall sharing the diagnosing physician’s dire prognosis with Dr. Irene Maumenee, then head of Wilmar Eye Institute at Johns Hopkins Hospital- one of the leading eye centers in the world. Her response? “Find another profession? No! Tim, you paint until you can’t!”  Even now, as I write her charge, I get shivers of joy and thankfulness. 

Hands & Voices note–Tim was diagnosed with hearing loss when he was five. His Usher diagnosis came years later. We asked Tim to share some wisdom for parents, especially parents of children with Usher Syndrome. Here’s what he says:

There are two main things to consider: the patient’s outlook and the parents’: foster both child’s and parents’ hope and affirm the child’s dignity. Dignity is important, it gives a foundation for hope. If I matter, if I am of value, if I have something to contribute, if I don’t buy the lie that I’m nothing without normal sight or hearing, then I can live each day with purpose and dignity.

Hope follows on the heels of dignity, for hope gives me something to anticipate and look forward to. And please, it cannot be, “Oh, I’m going to be healed, and then everything will be great and I’ll be happy again.” No, that’s risky. And out of your control. Our hope has to be upon something unshakeable, something we can build our lives upon without fear of it being taken out from under us. Hope can be as simple as “I will never leave you or forsake you.” This is a promise a parent can stand behind. A child needs to know he or she is not going it alone. If they’re old enough to grasp the ramifications of having Usher, then the diagnosis is a scary place to be. Yet, parents need to keep in mind the distinction between being smothering their child and being beside them.

Rebecca Alexander, a psychotherapist with Usher, has a sweet mantra that has helped her and her patients deal with challenges: breathe in peace, breathe out fear. This is where parents can truly help their child. You don’t smother a fear; you respect it and fight it with truth.

And this is where groups like the Usher Syndrome Coalition (usher-syndrome.org/) are a great asset. They offer truth (the facts about Usher) and support. The Usher Syndrome Society (ushersyndromesociety.org/) is also awesome. They are not clinical in their approach, but because their lives have been touched by Usher, are empathetic and ready to help. These groups help parents help their kids by arming them with truth and support. First, that they not fret themselves (get the facts about Usher from the groups mentioned above or simply by googling. There are three clinical types of Usher, and though every person’s case is unique, there are tendencies that give some measure of predictability. Get the facts. Know what you’re working with.

Breathe in peace, breathe out fear.

Secondly, take things one day, one week, one year at a time. Usher is not a death sentence. It is not a terminal disease. It’s difficult, yes, and it requires an adjustment for both patient and family, but you need to focus on what you do have, not what you might not have. Do not let fear reign.

I have a few favorite mantras that help me keep things in perspective:

“I do because today I can,” and Jonathan Swift’s quote, “May you live all the days of your life.”

Live. Do. Today. Tomorrow will take care of itself. Live today.

Thirdly, build your child’s dignity by affirming him or her. Find his or her strengths and beauty. Maybe it’s a talent or skill. Maybe it’s their beautiful sense of humor, of being able to laugh at themselves, including their Usher-related mishaps (the things I mishear can be laugh-out-loud funny, and my dog runs when she hears me coming). Affirm, don’t fret. Live forward, not in fear.