There are very few places in life where I actively feel my disability. With an Audeo V riding in my right ear, amplifying the world’s sounds, I can almost feel “normal” when I am around other people. Conversation has its difficulties, but usually most people are accommodating in a large crowd. Often, the participants will even say “Oh, no one can hear in a crowd like this anyway.” We all laugh and enjoy the evening, mostly filled with jokes, and the occasional drink.
One place where I consistently feel my hearing loss, however, is when my dad asks if I want to take a ride on the boat. Any time I go near water, I have to leave my hearing aid at home. Most hearing aids are not water proof, and my model is incredibly sensitive to even the slightest drop of moisture. At the beach, I can still pose as “normal” because I spend so much time body surfing over the waves until I am carried back to shore.
In the hull of a Sunfish, however, I cannot pretend my loss does not exist because I have no hearing aid to help me sail across the sea. As I put on my life vest and help my dad take the boat into the water, however, the dizziness accompanying my loss is accompanied by embarrassment. The only other children who sail with their parents are ones who do not yet know how to sail themselves. By the time they are twelve, they can man Optis and Sunfish by themselves.
Everyone else my age has been sailing on their own for years. Seeing as I am one of the few who still sails with a parent, I cannot help but feel ashamed, even when I know I should not. At this point in my life, I have opted not to sail altogether.
Between the embarrassment I feel at having to sail with a parent and the imbalances created by removing my Audeo V, it has become a lot easier for me to stay in the water rather than on top of it. Repeatedly, my family has told me that I should not be ashamed when I go out on the boat. Mom references one of her best friends, who did not learn to sail until her twenties and cannot imagine being without it. Dad insists that disability is not a big deal because “we are all disabled in one way or another.” Both of them tried to coax me to sail more, but I cannot get around the alienation I feel whenever I am on the boat. I do not even bother trying to tell them anymore because I do not think they can understand how painful this feels, especially at such a young age.
It is not that I dislike sailing—on the contrary, I used to be one of the biggest sailors in my family. As a pre-teen, I used to go out on the boat with my dad and brother all the time. The hallmark of my summer was going for spins around the Cape May Yacht Club. Chasing osprey; riding the waves left by bigger boats; racing back to the harbor before the latest thunderstorm hit. Nothing could have made me happier.
Each year, however, it was the same pattern: I would be shaky at sailing at summer’s start, practice every single weekend for hours with my dad, get the skill to sail on my own, and lose it all in August. Inevitably, that last month of summer was saved for ear surgery so I would not miss school. I did not mind it my first two years, however, because I figured it would not last. If I was patient enough, I would get all of my hearing back, not require assistance on the water, and finally sail my own ship.
By age seventeen, however, I realized it was not coming. I still tried to sail on my own though, because I am not one to give up without a fight. Several shaky spins around the harbor and dirty looks from gawking onlookers later, I was ready to say “enough.”
I was tired of failed surgeries, permanent hearing loss, and anything that drew unnecessary attention to it. By the time I was twenty, my parents knew to give up on trying to make me change my mind. I was not going back on the boat, and there was nothing they could do about it. After pulling myself onto dry land, I threw my attention into other activities, like writing, singing, painting, and fencing. Even on hot summer days when I had the itch to sail, I ignored it, not wanting to put myself in a situation that drew attention I did not want.
Those who have read my posts know I advocate for controlling how one stands out and taking charge of one’s life. It seems contradictory for someone all about standing on their own to present feelings of embarrassment surrounding a beloved activity. Sometimes, however, the best method of control is to pull yourself out of a place where you feel unequal to everybody else. At this point in my life, I cannot say if these feeling about sailing will last. With (hopefully) seventy-seven years left to live, there is always potential for great change. But until I am ready to step onto the Sunfish again, I will keep my shore activities to the beach, and watch for a boat ride where I can feel like a person instead of a disability.
@Cristi: You need an inexpensive water-resistant hearing aid, or since you have a conductive loss, possibly even a PSAP.
I think you are very brave to share how you feel , I guess everyone has something that they give up on. It’s allowed ! You are battling with several things each day its understandable that you come across something that just feels too hard , go easy on yourself. I do not have complete hearing loss so mine is a very different story but I found sailing in my late twenties and for me sailing with other people who were responsible for the boat was a life saver. It allowed me to do something that I felt my hearing didn’t matter much as I was a crew member and had very specific jobs but I helmed & participated in most aspects. I was with people which was lovely to be part of a team but couldn’t really join in the cockpit banter but it was OK for me to sit at the front of the boat , dangle my legs over and feel part of the wonderful ‘ silence’ of being at sea. All it needed was a crew that understood I couldn’t hear and allowances for that. It’s nowhere near the sailing that you experienced and loved but it was achievable in the sense I did it although as I said I do have some hearing. Conversation for the other activities I liked seemed more critical but on a boat as you got clear instructions at the beginning , you stay alert for changes etc I did not feel it was detrimental. My proudest day was when the skipper said I was a good crew member and they were glad to have me on board.
I appreciate your experience as I generally remove my aid when sailing. Re sailing with your dad, although it is necessary to for you, I have to say I would love to sail with mine but he’s no longer around. So try to enjoy the time with him if you can. All the best.