I’ll focus my answer on the deteriorating vision angle, since that’s in my wheelhouse. For you who don’t know, I have Usher Syndrome Type I (profound deafness coupled with retinitis pigmentosa [RP]), which means that I’m deaf and losing my vision.
Let’s get something straight. It’s far harder – logistically and emotionally – to lose something than not to have had it at all. I feel no sense of loss due to my deafness, because I never lost anything. I know how to live with deafness, and it’s a part of my identity. With my vision loss, I need to learn how to interact with the world, as a child would, but with an adult’s mind (and knowledge).
This question isn’t easily answerable, but I’ll do my best. Since I’ve known about my condition for a long time, I have to start way back when I stopped saying that boys had cooties and kissing was for losers (around the age of 11).
My pre-emptive strikes in the romance department.
Of course, not everyone knows what they’re in for. It’s a blessing and a curse to know. It’s a blessing because it forces you to cherish what you have earlier in your life; a curse since you can’t enjoy your sense as freely as others because you’re constantly monitoring your losses. It’s like waking up in the morning and saying, “I’m one day closer to death.” It’s true, but it takes some joy out of life when you focus on its end.
I knew that I would lose my vision ever since I was 6, so I performed some preemptive strikes to save myself (and others) some pain in the romance department.
I can’t say if it’s my natural preferences, or my knowledge that I wouldn’t always have the luxury of swooning over a nice chin and perfect abs (well … perfect abs are still nice), but I never emphasized looks or money in the romantic context. I notice attractiveness and attractive people, but I don’t experience the instinctive salivating as many seem to (on both sides of the gender aisle, mind you). I’ve always preferred men who treat people with kindness and integrity. I’m sure Brad Pitt is a very nice man, but a photo of him does nothing for me – even when I could see him well.
So, I was never attracted to jerks, which helped in many ways. Jerks or not, I still had to decide if (and when) I would tell them about my impending vision loss.
I decided early on that I would tell anyone that I was in a semi-serious relationship with. My rationale was that if that person couldn’t accept me for who I was, then they could get the hell out of my life. Mind you, I didn’t do this because anyone who would stay with me was a saint (that’s not saying much about me, is it?), but I didn’t want to have to carry two burdens. I figured that it would be hard enough for me when my vision loss reached its tipping point without having to deal with someone else’s insecurities as well.
My first few fleeting romances were over before I saw any need to disclose anything. When I was in college, I got into my first serious(isn) relationship. About a month or two into our relationship, I decided to tell him.
He was taken aback, and devastated, but didn’t break up with me on the spot. At that time, the only noticeable signs of my deteriorating vision was my night-blindness In fact, he said that it was actually a perk: “I got to escort you at night, and that made me feel pretty good.” Go figure.
As the relationship progressed and became more serious, I wondered if he’d be able to handle the day that my deteriorating vision reached the tipping point. I didn’t even know if I could handle it. Whenever I mentioned my concerns, he would dismiss them, and say that I was being unfair. Maybe I was.
No matter what, you’re never quite ready when the vision loss reaches its tipping point.
About two years ago, my vision loss went from a manageable hindrance to a real disability. I was still with the same boyfriend.
We knew it was coming, but we expected it to happen when I was in my late thirties or forties. Instead, it came sooner, faster, and more viciously than anyone had predicted. I had thought I was emotionally prepared for it, but I wasn’t. Neither was he.
At first, we didn’t know precisely what was happening to my vision other than there was some blurriness in the center of my vision that wasn’t typical of RP. My boyfriend convinced himself (and me) that it wasn’t my RP, but something else … something curable. So, he got me to change my diet and give up coffee (which made me grouchy in the mornings). None of these things worked. The blurriness just spread from one eye to the other and worsened.
After going through several retinal specialists, all who didn’t know what was happening to my vision, I finally got a specialist to confirm the diagnosis. It was what I had suspected from the beginning: My RP had taken a sudden nosedive. My doctor said that it “wasn’t atypical,” which just made me want to slap her. I suspect that she didn’t want to tell me that it was an unusual development, which would’ve actually made me feel better.
I remember the phone call when I told him the results. He asked me if I was OK, and amid tears, I told him I was fine, that “It had to happen at one point or another, so it may was well happen now,” and laughed. He didn’t laugh along.
He told me when I came back that he was afraid that I would change. He had begun dating me and continued dating me for who I was. He always told me that he liked my optimistic spirit and strength. But what if I crumbled? What if I lost those qualities? I couldn’t answer him because I was afraid of the same thing.
Vision loss is like any major loss – even if you know it’s coming, it’s still hard when it arrives.
Dealing with change.
Change is a constant of life. If we don’t change, we die.
I’m not a particularly noble and benevolent person. Nor is he. We’re just normal people doing our best.
Even though change is a constant of life, it’s still stressful. Both of us do nasty things to each other because of the stress. On more than a few occasions, I’ve yelled at him for trying to help me and accused him of being patronizing. In turn, in fits of frustration, he’ll snap at me when I trip over something or break something by knocking it over by accident.
The hardest part for me isn’t the irate comments or petty arguments. It’s knowing that the love he bears for me brings him pain. He must watch me struggle to adapt as my visual world becomes more blurry and constricted. A part of me wishes that he’d walk away for an easier, less painful life, but I know neither one of us could bear that fate. I have to take comfort in the fact that I also bring him happiness as well as sadness.
Certain moments make the guilt worth it. We find new things to do together that we may never have considered before like camping and skydiving. We enjoy good meals together, both at home and at a restaurant. We still laugh at stupid jokes together. He tells me about work and I tell him about my writing. At the end of the day, the good outweigh the bad.
I’m not telling you those things to illustrate that we have a bad and turbulent relationship; I don’t think we do. We have … a normal relationship with ups and downs. We, however, may be a bit more stubborn than the average person.
For those of you who are wondering why he bothers staying with me, please don’t. You’re doing both me and him a disservice. He enjoys my company, and has chosen to take me for what I am – a package deal … just as I do him. That’s what we all need to do for our romantic partners: take them as a whole or not at all. People aren’t cars where you can upgrade to leather seats and change out the clunky transmission.
Mind you, our situation isn’t unique. Our particular challenge may be unique, but the fact that we face them isn’t. If you’re with someone longer than a year, the odds are that you’ll encounter some kind of major change. Maybe it’s a job transfer, childbirth, or a death in the family. In that sense, my story isn’t anything special.
Change happens, if you like it or not. Sometimes, the hardest part is accepting the changes, but it’s a good feeling to know that someone is in it with you.
This article is about Rebecca Alexander, who has Usher Syndrome Type III, which involves gradual hearing and vision losses. It’s a great article and gives you some insight into what it’s like to deal with dual losses.
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