Touch Points
By Renée Walker
Finding Release from Isolation
As I contemplated the topic of my column for this issue, I kept being drawn back to a statement made by a friend in response to my last column on the issue of a national SSP for the DeafBlind. Her comment had been a positive one about the article, but a statement that support at home from family and friends is needed the most. This refrain I hear from many DeafBlind and actually find myself repeating often. I really felt the need to probe more deeply this issue and these feelings that are the source of this refrain. Drawing from my own experiences and statements from others, we will be exploring the feelings of isolation and loneliness of DeafBlind people and the fears of the unknown and of helplessness of many hearing/sighted as they deal with a DeafBlind loved one. Be mindful that no one is to blame for the situation we, DeafBlind, find ourselves in. Together, we and our circle of loved ones must learn to cope and enrich each other’s lives.
I can only tell you for certain of my feelings as a person who was deaf by late childhood with growing, but uncertain vision problems who seemed to suddenly become blind around age 40. My experiences and those of whom have shared the most with me are from a blinded later in life perspective. Some have more hearing than I have ever had though most would not have known the extent of my hearing loss before I lost the vast majority of my vision seemingly at once. Our experiences now come with some perception of sight and sound from earlier in life. There is an expression that goes, “Ignorance is bliss.” I have wondered if it is easier to be DeafBlind if you were so from birth or earlier in life without any memory of sight and sound. I can’t fully answer that, but I think the challenges are very different, and some such as education are even more difficult, but the feelings of isolation and loneliness can be the same. For me, I am glad that I have a perception of sounds and visual memories. As far as sound, I truly only miss the sound of music, but I still feel it and now in ways deeper than ever before. For me, the loss of vision is what seemed to be the diverted path leading to invisibility. Being deaf didn’t affect me as much possibly as part of that ignorance is bliss theory because I lost my hearing progressively beginning shortly after birth. I think more of the reason was that I could still gain so much information from the world around me visually. I was oral because there were no other deaf people in the places I grew up. My mother was deaf, and so was an uncle, but I lived far from him and saw him only on occasion. My mother and uncle grew up in a different time where being deaf was not a good thing and even a feared thing, so they hid their deafness. They were excellent lip readers and with aids could hear some environmental sounds and possibly learned to decode words although early childhood found them as hard of hearing. As with me, early hearing allowed me to develop speech with a normal tone. My lip reading skill is also excellent if I can see a person’s lips, but I only feel comfortable getting that close to my husband. In the past, people thought I could hear more than I could. With my vision decreasing slowly, I was able to go many years without facing the issue at all. At 40, I could no longer do that. Spiritually, I was prepared. God led me on a journey in the years prior that brought me so close to Him that the coming and unknown blow of being DeafBlind was dulled. I took the changes in stride and got to work learning new ways to be as independent as possible. I learned braille and ASL. I learned new ways to make sure I could take care of myself. What I didn’t expect was that those around me wouldn’t be as strong in learning to deal with me differently. I soon found myself with none of the friends I had before from my active life as a mother, teacher, Boy Scoutmaster (I had sons), church member, American Red Cross volunteer, and more. The only connection to my former life was my family and Southeastern Guide Dogs, Inc. (SEGDI) where we had volunteered as puppy raisers for many years as a homeschool project. The family struggled to deal with my changes, but they were there. The members of SEGDI and especially one, Julie, rallied around me and encouraged me as I stepped out in faith to learn new skills including getting my guide dog partner, Joey, who is a great help to my sanity. This connection helped in the initial years, but as the residual vision decreased taking away that imagined hearing everyone thought I had and the sudden death of my biggest advocate, Julie, this connection grew fainter because they truly only understood the loss of one sense, vision.
Although I lost all other connections and the seeming invisibility was almost complete, my family was still there, but they desperately wanted to pretend that I was the same and wanted me to act and do for them the same as before. My inability to do that despite my efforts led to frustration for us all. Communication is the most difficult especially now that there is no vision or hearing. The immediate family has struggled to remember many signs, so the limited communication comes from the internet-connected computer as we type to each other on chat programs that are somewhat braille friendly. Other more meaningful conversations seldom take place. I miss the closeness that I once had with my children and even with my husband. Our relationship is more based on silent care giving. We talk through the chat program about day to day issues like when the pest control man is coming, doctors’ appointments, and what technology I need. Deep conversations are few and far between. This isn’t from my husband not trying. It stems from lack of good braille skills and chat programs not being very braille friendly. My braille skills are fairly good and improving for someone who has only known braille for about three years, and I practice every day; but it will take some time before my speed and comprehension equals someone who has read braille since a child and will never reach the speed I had as a visual reader of print. Books are my love, though, so I will never give up trying. If I fault my husband and my immediate family for anything, it is for not trying to remember they live with a DeafBlind person now. You can’t leave the dishwasher door down or a pile of books on the floor or a cabinet door open. Safety in my own home should not be a worry that I have to deal with daily. For the most part though, the growing invisibility I feel and have felt is not anyone’s fault. It is certainly not mine as I have worked hard to stay independent and learn the skills to communicate with others in many ways. I don’t fault my family who are just grieving the loss of their wife and mother as I once was and who are just coping in the best way they know how with the difficulties we all face. I don’t even fault those friends, extended family, and acquaintances who have faded from view because they were too uncomfortable or afraid and feeling hopeless to know how to push through the dark silence that had engulfed and walled me in.
There is no one to blame for my isolation and loneliness, and I feel that is probably the case for many DeafBlind. Despite the new skills and technology, it is still ever present. I am not without hope for many reasons, as there are family and new friends who do try to break through the barrier. I socialize with DeafBlind friends over the internet and at the occasional social event or camp that I can attend. New sighted friends, both hearing and Deaf, in the area try to help as they can. The communication barrier is eased by those who know ASL or even some who try to fingerspell or type on my keyboard as I read on my braille display. This is support that I can use and enjoy. The ability to have a friend who can sign or type to me and take me shopping with them or go with me to a park or a local festival does wonders. The first step needed for true support is to have someone care enough to reach out. Yes, my differences can make you uncomfortable at first, but the person I am inside is just as real and human as I was before I lost my sight and hearing. This is true for all DeafBlind no matter how much they have lost in vision and hearing. The first step really is just making an effort.
Family and friends would do well to try to learn some signs or Fingerspelling. Communication is easier and faster in tactile ASL or even Fingerspelling with me because I am fast in processing. I can talk most of the time unless my asthma is triggered. That helps some people feel more comfortable with me, but learning to understand another’s Fingerspelling or sign isn’t really any more difficult than learning to express. In time with patience, communication will come easier. It is the first few steps that are the hardest. You just have to try. If you never try, you will never do. Regardless of the method, communication can happen. Ignoring or pretending I am not there is not helpful. Others will talk about me, but they will not try to engage me. Worse, some people will try to force me to respond by yelling or nudging me. Thankfully, that doesn’t happen often. Most often, I am just invisible. By just trying to communicate in some way even by printing letters with your index finger slowly on my palm, you will get the message across even if clumsily. There is no shame in that, and you will go a long way in helping to include a DeafBlind person.
Truthfully, a simple touch on the shoulder or pat on the hand goes a long way toward helping me to feel less invisible. Touch is more important than words at times, so try that first. Hugs are good, too, after a bit of time or if we know each other. We do have to do some things differently now, and family and loved ones have to, at least at first, consciously think about their activities and objects and how they might affect a DeafBlind person. People can’t just expect us to find a chair on our own in an unfamiliar place, or find the proper bathroom door in the restaurant. We need a little guidance now even with our cane skills and guide dog partners. With effort and in time, family and friends can support us in the ways we need, but allow us to be as independent as possible, too. We certainly do not want you to do everything for us. We want to do for ourselves when we can. We just need you to try to understand how we need you to support us, and we need you to be patient. Most often, we can tell you how you can help us if you will take the time to listen. Especially in the beginning, but even after time, there will be moments when we become frustrated with ourselves and our situations. We might lose our tempers, or throw a small pity party. We need you to be kind and gentle as you try to deal with our frustrations. Most of us try to deal with our dual loss of senses with some dignity, but at times, it can get to the best of us. At times, you might feel frustrated, too. We will be patient with you if you just don’t give up on us. With the supportive attitudes of family and friends, everyone’s frustrations will lessen more quickly. With a little effort toward understanding and communication, the isolation and loneliness can disappear or at least be minimal.
Proper understanding and support from family and friends is the key. DeafBlind have to learn the skills to be independent and to communicate and have access to technology, but none of the skills, technology, or state support can be fully put to use without those close to us reaching out in ways that will support our needs and differences. The dark silence that engulfs us doesn’t have to be a void. We don’t have to be invisible. It just takes true understanding and a little concentrated effort to help release us from isolation.
If you have comments about this topic, you may write a letter in braille or print to Renée Walker, 143 Williamson Dr, Macon, GA 31210; or you may email me at rkwalker@wynfieldca.org. You can also read and comment on my blog at http://www.deafblindhope.wordpress.com.
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