March 2019 Huffington Post Shannon Reyenga Guest Writer

It was mid-January in 2016 when I picked a day to tell my boyfriend I was going blind. Don’t worry: He already knew I was deaf. That was covered on our first date. I just left the utter buzzkill of my rare genetic disorder and impending vision loss out of our relationship for the first six months. 

At the time, the vision loss was still relatively new to me. I was born with progressive hearing loss, but I didn’t find out I was going blind until the day after my 24th birthday, in 2015.  It was a Saturday. The routine appointment was at a LensCrafters. I didn’t think anything was wrong with my vision. If I had suspected, I probably wouldn’t have picked a retail chain in a mall between Macy’s and T-Mobile learn about my untreatable progressive vision loss. I knew something wasn’t right when the optometrist peered into his computer screen in silence for several minutes. I sat in the exam chair with dilated eyes, sure the dark bony tissue that appeared in the back of my eye was a result of too many Jagerbombs the night before. The optometrist said what he saw was most likely a progressive condition that causes blindness. 

A few months and tests later, a diagnosis was confirmed by a retinal specialist. I had the most common cause of deaf blindness, a rare recessive genetic condition called Usher syndrome

Like most people with Usher syndrome, I was born with hearing loss caused by underdeveloped hair cells in the inner ear. The vision loss part of the syndrome usually starts in adolescence with a condition called retinitis pigmentosa. This causes the cells in the retina to degenerate. The degeneration initially causes night blindness and then slowly takes away a person’s peripheral vision, leading to tunnel vision and eventually no vision at all.

Shannan Reyenga

The author and her then-boyfriend, now-husband

At the time of my diagnosis, I had night blindness but pretty good daytime vision. But since then, I’ve known I’ll eventually lose most of my vision. There is no cure or treatment for the deaf blindness caused by Usher syndrome.  After I learned I had it, I thought I lost any chance of finding love. I was single and already struggled to find guys to date who accepted my hearing loss. How could anyone want to be with me now that I was going blind too? I struggled with the idea of finding someone willing to face this challenging diagnosis with me. I could hardly face it myself.  

In the months after my appointment at LensCrafters, I kept the diagnosis mostly to myself. Only a few friends and family members knew. I didn’t want anyone to see me differently or think I wasn’t capable of working my job. I kept up a strong front, but inside I was floundering. The independent career woman I pictured myself as was gone. Instead, I constantly thought about the burden I would become to others. I moved back in with my parents and waited for the day I’d wake up and never see again. 

Throughout this dark period, my elder sister encouraged me to continue dating. It took a few months, but eventually I listened to her, and I met a guy named Willie on OkCupid.  We connected over craft beer and mutual distaste for Carl on “The Walking Dead.” Willie had kind, green eyes behind dark-framed glasses, reddish brown hair and an affinity for checked and plaid shirts. He was up for any activity I wanted to do, whether that meant visiting an art festival or a seven-mile hike in the Colorado summer heat. I knew I wanted to continue to see him because he made me laugh while I was still wrestling with the sadness of my diagnosis. The only problem was that he was a doctor. He wasn’t going to just ignore the significance of my hearing loss or its cause.

The dance of finding the right time to disclose my diagnosis started on our first date. I told him about my hearing loss, but I left its cause vague.  “It’s probably genetic,” I said. “I’m getting genetic testing this summer.”  That was true. I was getting genetic testing ― to figure out exactly what type of Usher syndrome I had. 

He didn’t take the bait. Instead, he asked if I was going to get a cochlear implant. This was a discussion I was much more ready to have, as I had just started the assessment process to undergo surgery for a cochlear implant that fall.  The cochlear implant surgery was my saving grace over those first months. It kept the focus on my hearing loss and explained why I was living with my parents. In the meantime, I started casually naming the ways my Usher syndrome affected me.  “I take the bus to work,” I said on our second date, neglecting to mention that driving to my office would not be safe for someone with night blindness and limited peripheral vision. “I don’t see well at night,” I said a month into our relationship, after he found me lost in the dark looking for his bathroom by tracing the moulding on the walls with my fingers.“I’m trying not to drive in the dark,” I said a couple of months after we started dating, as I started cutting our dates short to accommodate the dwindling daylight hours in the fall.  “I try to avoid driving,” I said five months into our relationship, after a crash with a bus left me wondering if I should be driving at all.  I figured he had a right to know how the syndrome affected me presently. If things got more serious, I’d tell him what a future with me could look like. 

Even with this logical reasoning, I felt guilty about not telling him the whole story of my diagnosis right away. Honesty is supposed to be a mainstay of a healthy relationship. Was I being honest if I wasn’t telling him the whole truth? It was hard to know what I should do.He was so cool with everything I said. We planned dates around the bus schedule and did things outside the city on the weekends.  Eventually the shock of the diagnosis wore off. It became easier to live with the diagnosis knowing I could still have fun and accommodate both my deafness and my vision loss. I had cochlear implant surgery three months into our relationship, and shortly after I recovered, I moved out of my parents’ house into downtown Denver, so I could walk to work and be more independent. 

The move meant Willie and I could spend more time together. He became one of my biggest supporters as I learned how to hear with the new implant, whether that meant practicing speech recognition or celebrating my discoveries of sounds like crunching leaves.  The relationship was going great. But the guilt about not disclosing my Usher syndrome was growing. Daily, I searched “how to tell your boyfriend you are going blind” on Google. No results. I talked with my family about it.  I practiced disclosing my Usher syndrome with close friends and got mixed results. There’s just no way to know how a person will react to shocking news. Some friends responded with sympathy and wanted to know more about the diagnosis. Others quickly tried to change the subject or responded with silence. I gathered materials on Usher syndrome, genetic testing and resources for family members. I had them all ready to set on the coffee table the day I told him.  We’d been together for six months when I told him. That morning, with a churning stomach and quivering legs, I said the words no one in a new relationship wants to hear. “We need to talk,” I said. 

The story of LensCrafters and my retina specialists poured out of me. All the times I cut our dates short or got lost in the dark suddenly made sense to him. Even though we hadn’t talked about kids yet, I told him about how if we had children, there would be a chance they would get the gene too. I let it all out. “What an asshole gene,” he said. 

There wasn’t a more perfect way to respond to this kind of news. He never blamed me for my diagnosis or acted fearful of the future. Willie had fallen in love with me for my personality and not my ability to see or hear. We adjusted to Usher syndrome together. When trouble with the asshole gene emerged, he gave me extra help like repeating what others said and guiding me in dark places. Today, Willie and I are married. We’ve been together for over three years. My cochlear implant has improved my speech understanding remarkably since we met, but I still have profound hearing loss in both ears. I can no longer drive, and I’ve started using a cane to navigate. My mom still gets questions from some of her colleagues ― “Is he OK with it?” No, he’s not OK with my going deaf and blind. I’m not either. Of course, we’d prefer my vision and hearing to be stable. But we’re still together despite the difficulties this asshole gene has presented us. 

I’ve found the more secure I’ve become in the diagnosis and my future challenges, the better. Telling Willie about Usher syndrome opened me up to tell more friends, his family, neighbours and even the board of the town where I live. So far, there haven’t been bad reactions. Only genuine desire to help.   After we told Willie’s parents about my diagnosis, they put up night lights around their house. After my neighbour saw me walking with a cane down our driveway, he offered to give me rides during the day. 

When we got married, many of our friends and family members donated to the Foundation Fighting Blindness to find a cure for Usher syndrome. Opening up about my diagnosis has not only revealed the truth to Willie. It opened me up to more love from the people around me.  As Willie and I start building a family together, there are still lots of unknowns related to my vision and hearing. Today, I’m legally blind, with just under 20 degrees of peripheral vision. My vision has declined significantly since Willie and I met. But we don’t know if my vision loss will continue to progress at this rate. My hearing loss has not changed much since we met, and eventually I will get a cochlear implant in my other ear. Gene therapy trials for Usher syndrome are in their early stages, and we have hope that they could save my hearing and vision in the future. While we don’t know what may happen with my vision and hearing, we have love to conquer any difficulties ahead. We don’t dwell on what may happen, and we face the challenges as they come. Usher syndrome has created some trying circumstances, like giving up my driver’s license and finding a vibrating baby monitor to alert me to our future baby’s cries, but an asshole gene cannot stop us from enjoying each other.

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Here is a link to Deafblindness support and information.
They are based in Western Australia and supported by Senses Australia.

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