Category Archives: Turner Syndrome
I am relatively young to have experienced significant enough hearing loss to require hearing aids and as I have gotten used to my new “bionic” ears, I have been thinking about hearing and how I communicate with the world, and how the world communicates with me. At first I felt funny having to get hearing aids; a 34-year-old should not need hearing aids, but what I wasn’t hearing was mucking up my life. At least now I knew there really was a problem and I had a solution. However, despite how nice it is to hear things louder, and in digital, I still find the occasional failure to communicate. I have noticed that people take for granted that they have spoken clearly, and/or fully have your attention. This is especially difficult if you have hearing loss in the same manner I do, which is due to damage to the nerves in the ear. This means that I might hear the sound, but might not make it out clearly. I hate asking someone to repeat, but sometimes I just cannot understand what has been said. As time has gone on, I am less afraid to say, hey, “I have broken ears, please, speak up and speak clearly!” I know it takes work on my end, of course, I do try my best, but it works both ways, especially if you are speaking with someone who is hard of hearing, which is more common than people realize. Another thing that gets me is people trying to speak to me as they are walking around a corner, or speaking to me from behind . I can’t imagine that is easy even with good hearing, but it is not easy to understand someone if they are walking away, not facing you, or in a different room. I know it is bound to happen, but I wish people would be more aware of doing it, even when they are speaking with someone with good hearing. Now I find myself trying not to do the walking away, talking thing. I also find I try to make sure I have the person’s attention before I speak. I have come to think more about how good communication works in this world and in relationships. I am by no means perfect in my communication, but not having perfect ears has made me more aware of how good communication should work.
PS – Thank you to Opinionated Man at HarsH ReaLiTy for giving his followers this challenge http://aopinionatedman.com/2014/05/25/harsh-reality-challenge-got-an-opinion/#comment-142511. He is a truly inspired blogger, with a passion for the written word 😀
Really excellent post! As I wear glasses (sometimes contacts) and hearing aids, I can identify with this!
I recently got hearing aids. Yes, while in my 30’s I have been diagnosed with a hearing loss and now must wear hearing aids as a result of irreversible nerve damage. It was a creeping problem for the most part. I had to set the volume higher, ask people to repeat, strain to try to keep up with conversations in certain situations, and now live with a constant ringing in my ears. Apparently I was the last to admit to myself there was an issue. I am glad I did something about it, because I was living in a state of stress and missing out on life in some respects. Having had a few days to adjust to the tiny buds in my ears, I am now aware of new sounds around me, and it certainly has made things interesting. The hum of the a/c, the copier rolling to life, the click clack of shoes on the hardwood floor, yes, those sounds seem like nothing, but for the first time in a long time I really notice them. I am not straining as much in conversations, and I am enjoying that I don’t focus on the ringing in my ears as much. It wasn’t a huge change in my life, but one that I think will be positive and beneficial in the long run.
When I was about 11 years old I got sick with a bad cold or flu. At the same time I had also developed a goiter. My eyes protruded and my neck had a tire like bulge. The doctor ran some tests and we discovered I had a thyroid condition. It would require daily medication and was easy enough to treat. However, I also wasn’t growing. At the time I was hovering well below 5′, despite my parents being taller than average. My dad is 6′ and my mom is 5’8″. Further tests lead to a more devastating diagnosis of Turner Syndrome (TS). Essentially I was born missing one of the two X chromosomes every girl and woman has. This leads to short stature, infertility, and a variety of other possible complications. This is a rare condition affecting 1 out of 2,000 to 5,000 female births, and only about 1% to 2% of embryos with this condition are actually born. With this diagnosis my life became a regular series of doctors appointments as I was growing up. I was placed on a protocol by my specialist, and as her oldest patient I was a test subject for her as well. This protocol consisted of Human Growth Hormone (HGH) and Estrogen Replacement Therapy. I had a sonogram of my kidneys to make sure they were formed correctly. I regularly got x-rays to see how my bones were fusing. This was certainly a difficult thing to face during adolescence, when a child may already feel different, to have a genetic test confirm, indeed you are quite different. I could get angry at God for giving me this to deal with, but I never have. I have the sense that I am lucky to have been given the life I was, despite it’s imperfections. It is part of my life, and something I have to deal with on a regular basis. I will never have a child of my own, and can only get pregnant using a donor egg and IVF. Adoption is something I have tossed around, and the idea of giving a child a home and family that needs one seems to be the route I would feel comfortable taking. Why try to crate a child when I would face a more than risky pregnancy, why not find that child who needs me? I feel that might be my purpose if I am to become a mother. I am at risk for heart issues, diabetes, eye problems, osteoporosis, hearing loss, just to name a few. Since there are limited women and girls with this condition to study, it isn’t easy for doctors to know with certainty what issues a TS patient will face as they age. I did reports on the condition in school to learn more, and had for a time thought I wanted to go into the field of medicine specializing in this and similar conditions. My hope was to give assistance to others facing what I had faced. Although I realized quickly my squeamishness would not be conducive to a career in medicine. Besides and physical issues, there are the psychological issues that go with a genetic condition. Dealing with infertility from such a young age is not easy. It certainly sets a TS teenage girl apart from her peers. Feeling like you don’t quite measure up to society standards is never an easy thing to deal with, and knowing how you don’t measure up doesn’t make it any more palatable. It isn’t that TS makes a girl or woman masculine, but you certainly don’t feel like you are quite an average woman. It is hard to feel like you can be accepted for who you are, when you feel so apart from the average. Fortunately I am taller than the average TS woman, although this brings me to the conundrum of sharing TS with them, but somehow being different from them. I feel that I can’t even fit in with TS right somehow, because I tower over them, so sometimes I feel where do I really fit in? Where can I be accepted? Hard things to wrap my head around. Yes, every woman has her body issues, but this condition is so linked to your womanhood, accepting yourself is not without difficulty. This diagnosis may not have been the most devastating by some standards, but it certainly changed how my life would play out. I have faced unique challenges, and will most likely continue to do so for the rest of my life.