This week, as it turns out, is Deafblind Awareness Week. This was news to me. I decided I would write my thoughts about what it means to me to be deafblind.
There are many variations of deafblindness. Some people are totally deaf and totally blind. That said, that form of deafblindness is rare. Many like myself who are deafblind have some sight and hearing remaining, but can't decipher what they are seeing or hearing or can't do so without much concentration.
I live a secluded deafblind life. I don't have friends IRL who are deafblind because of my MCS and where I live. There is not a large deaf or deafblind community here- so culturally I am like anyone of you. I just have to work hard to fit into a world that functions to high degrees on sight and hearing senses.
I miss the deaf community experiences I had in California. It never donned on me just how much I was leaving behind when I packed up Met and my belongings and headed off to Oregon where I've left that culture behind and have had to live like a hearing sighted person to fit in- especially into family. It hasn't been easy but I have adjusted.
So what's my life like anyway?
I am profoundly deaf. I can make out what some people say as long as they face me, have no accent or speech impediment, and there is no background noise. I can wear hearing aids for the essentials, but due to EMF sensitivity, the consequences of doing this can be high for me; thus I opt against wearing them for anything that I can get by with my guide dogs sense of sound for. Sometimes its great being deaf because I can tune out things that others find really annoying. Other times, sounds that I can hear, send me over my rocker if you know what I mean- like fireworks (but those I hear minimally at best now thankfully!) Progressive deafness has its moments of being a blessing and then moments when it feels like a curse. Most times, I like my quiet- perhaps because I have lived at this level for so many years of my life.
My eye disease is not common, but has the impact of a distorted jigsaw puzzle with most of the pieces missing. The pieces I do make out, I have no idea what they really are, how close to me they are, or how far to the right or left they may be. By all measures of functionality, what I do see, does me no good.Its been harder to adjust to my blindness then to my deafness- perhaps because my blindness came later and ended many enjoyable past times, took away my ability to see pictures, and almost took away every hobby I had since my MCS (but not quite)
I don't sit at home and twiddle my thumbs though. grin Instead I live my life independently. I ride the fixed route bus and max trains, go to the store, to the bank, to the Drs, to the Veterinarians, to take leisure walks, to experience new routes in new locals. I am like anyone else except I just need to use a tactile mobility aid to judge traffic, braille compass to judge directions, and my guide dog to navigate the path we need to take- and yes, every once in a while save me from people who drive carelessly, or who interfere as we are walking down the sidewalk or trying to cross a street because they want to know all about my dog or tell me how they have one just like him at home.
This life I live certainly isn't the one I envisioned when I graduated from highschool, but its a good life. When I am not out in the community, I am home resting, training my dog, doing laundry, cleaning my home, making my meals, sewing new gear for my guide dog or clothes for myself, or best of all- playing with Thane. Playing ball is Thane's most favorite past time thing to do.
In my dreams I would be able to find an ASL teacher to help me learn tactile ASL so I could understand more easily what is being said at appointments, but with MCS that is not in the cards. Before MCS, before service dogs were in my life, before I was legally blind, I had taken two semesters of ASL. I was able to benefit from it in classes but with my visual impairment my comprehension level from a distance was minimal. As a result of this difficulty, I preferred the captioning method.
I don't know what the future holds for me with my progressive dual sensory losses- whatever it entails though, I am sure I will figure a way to continue to live my life in independent fashion- cuz afterall I hate waiting for people to do things for me. I am an independent deafblind gal who just loves to live my life without having to lean on others. I guess its just who I am. grin
Thank you, I enjoyed this. I didn't know it was deafblind awareness week.
ReplyDeleteOnce again, I so much wish we lived near each other. I would love to do tactile ASL with you. I have lost a lot of my fluency since I stopped needing to use sign to communicate all the time, but the few times I ever used tactile ASL, I really enjoyed it, and I miss signing sometimes. You know I have a friend with MCS in your state, but not near where you live. I wonder if there's an MCS organization in your state?