A Journey of Recovery
A Journey of Recovery
By Kristin Stansell
You may not believe in miracles, but I will give my personal account of what happened to me. At first, I was in a coma so I could not give my thoughts at the time. It is remarkable how much I've progressed; I am considered a medical rarity. I have spent many years writing out what I've gone through in the process of my recovery, and I want to share my experiences with my hearing with ALDA (Association of Late Deafened Adults).
When my auto accident happened six years ago, I was in Scotland near my university. I had driven by British rules (driving on the left instead of the right side of the road) for eight months and was returning from a photo shoot. At that moment, I followed the American rule for passing a truck in the turning lane, and I was on the wrong side. I was trying to be adjacent to the truck but as soon as I started, I realized that trucks make wide turns. I had gone too far forward to get out of the way of the double lanes used by the turning truck, and I was in trouble. There was a rail keeping me from leaving the road, and the result was — crash-boom. The paramedics had to cut me out of my car. I had suffered a traumatic brain injury (TBI) and was comatose for four months. By the third year after my TBI, I had recovered my knowledge and education memories. I did not know why or how I knew, but I would make the correct choice out of instinct.
What's left for me to heal is my walking balance and auditory ability (ability to transfer what I hear to the brain for recognition). Currently, I use one or two canes or a walker, but I continue to progress with my balance. I'm now 31, and all my life I had been right-handed. But after my TBI, my right hand was ataxic (shaky) and I was forced to learn to use my left hand. It is hard but I do not complain, because things could've been worse!
About two million Americans sustain a TBI each year, resulting in 50,000 deaths and 80,000 new cases of long-term disability.1 I know that I'm not alone, but I do feel alone. My hearing deficit isolates me much more than my physical limitations.
When I was emerging from my coma, I was noted to be tracking people and watching the television. This communicated to my family and healthcare providers that I had not lost my sight. But I was deaf and mute; I could not make noises emerge from my mouth. Being unable to hear is a common temporary deficit, so therapists expected my hearing to improve. I was only mouthing words because I had no idea that no sound was coming out. I wanted to communicate, desperately!
My ears could be hurt by loudness that I was unaware of because it was a brain issue. With extremely loud noises, I would hear a very faint sound and get shocking headaches even though I did not know what was causing this to happen. The brain translates the different noises of words into recognizable meanings. I could sometimes hear things that sounded like loud machinery. I guess I was hearing my brain working to recover my hearing, either that or amplified noises. I was astonished that I could lip read! I remember thinking, "Something is weird! I can't hear her (my mother) speak, but I can understand what she says! I don't know how or why." Actually, I "heard" her from my brain's projection of my memories of her voice, but it was extremely and abnormally soft.
My nurse-mom had been with me from the very beginning, flying to Scotland after my family was notified of my accident. After four months I was medically flown back (with my mom) to the U.S. A radio station was going to pay for the trip, but it was too expensive. Therefore, St. Andrews University, which I had been attending, decided to pay for it. We were flown to a healthcare facility in Atlanta. I do not remember any of the flight and just a "wee" bit of Scotland and only those memories that had an influence on me.
I required a "sitter," who was paid for by the government. I went from one sitter to the next. They often never showed up. It was frustrating to communicate with them because each one spoke in a different way. I was left with my sitters for only a few hours, two days a week. During the other three week days, I went to Emory's center for rehabilitative medicine. I would try my newly learned sign language, but my words were not clear, so the sitters just ignored me. I know that they were only legally required to make sure I was fed, bathed, and working on my projects like walking, but I desperately wanted to be able to communicate! They made me completely miserable, and my only respite was attending rehab. I could rejoice in the progress I made, which made me extremely happy. During the third year of the dreaded "sitter-ness," my dad quit his job to stay home with me as my caregiver.
I caught my dad working around the house listening to his iPod. I told him that I missed music and he apologized. Music had made such a difference in my life. It conveys such emotion! I can hear percussion, beats, and such, but I really miss hearing the beautiful sounds of the wind instruments. I had played the flute and piccolo and marched in the color guard.
I take a hearing test once a year. In the past couple years; my hearing has stayed the same. Even though this is good news for the doctor, it is disappointing to me. My audiologist wants to continue my yearly hearing tests to make sure that I do not get worse. My psychologist and I think I'm healing but not for precisely what the hearing test picks up. (I initially believed that if I could hear anything, I could not be deaf. This is a common misconception).
For years, I felt like I was in a bubble, unable to hear. I could lip read, but most people in my area speak with a Southern accent. I was unable to communicate with anyone other than my parents, so I felt lost. That is a normal feeling for a person who was extremely social and all of a sudden became completely unable to be social. I felt that people were put off and nervous around me because they did not want to hurt my feelings. I became lonely. I know that this is my personal challenge. I have friends and family that I am close to, and that is more than some people have!
SO many people thought if I couldn't hear what they said, I must be stupid! So I just played with them! Nothing bad, just silly, little things! I thought, "Well, the joke's on them!" Then I got tired of playing and wanted people to take me seriously. I was learning sign language, but it is hard, and I didn't want to show constant frustration. Therefore, I kept a smile plastered on my face. I had taken sign language when I was at Oxford College of Emory University in Atlanta, so I was building on that. I had never been around people who can sign fluently. I sat in the Deaf section at church and the interpreter signed SO fast, but I would catch a word here and there, which indicated that I had learned something and soon would understand more. My family and I stick with the official version of signing for most things, but for others, we use "home signs." These are fun, but since they are not understood by other people, we have to be careful about using them.
I didn't have a suitable place where I could learn sign language. Most places use "speech" as a method for teaching. That did not work because—duh—I was a newly deaf individual. Although I once had a Deaf teacher who was really great, at that time, my memory was impaired so I could not learn to sign. As soon as my memory healed, I was back at it! I eventually used a free online sign language program that is highly recommended.
Others cannot understand what I say because it isn't loud enough for them to hear. I would know how to make the proper noises if I could hear myself. I understand that some Deaf people learned to speak even though they never heard. My brain injury caused irregular functioning in my mouth, lips and tongue, which is slowly healing. But often, six years later, I think, haven't I given it enough time?! "Time" is a very frustrating word.
Most people do not tell me how I could improve my speech because they afraid to hurt me. Some people sound out the correct way to say the words, which would work if I could hear them. Some sounds are not visually accessible, so I cannot see how to copy them. But I've improved. I started by just mouthing words without any sound coming out but recently, my doctor said that she could understand 70% of what I said! (I'm dancing a little jig—only in my head, of course!)
My many college friends stayed loyal to me. I had told them I would hate for them to say something that I couldn't completely understand, and I asked them to write down their thoughts for me. I understood that they were going about their lives and had other struggles, but I wanted them to share with me as they once had, and I wanted to share things with them that I couldn't share with my family (girl talk). Without being able to converse, I am unable to make new friends, and the isolation that I suddenly found myself in is extremely frustrating and lonely.
Even though I can't hear much, I can "hear" my friends' voices if I dream about them or imagine them, because I had learned their voices. I anxiously strained to hear their actual voices, and once in a while, I could hear just a smidgeon, which was glorious! I have a DynaWrite by DynaVox, which is a machine on which people can type what they want to say and pass the machine back and forth. Conversations can also be saved. I don't go anywhere without my DynaVox, since few people understand sign language and I am not fluent in it either (blush).
There were occasions when I was awakened from sleep by "hearing" something I could not describe. It was super loud (to me)! I later recognized the sound and could not believe that I could hear these tiny noises, so my hearing must be improving! For example, when I was getting out of the shower, I "heard" a loud pounding on the wall and thought that my dad was hammering on the house outside. I moved my faucet sprayer over for some reason and was amazed that Dad wasn't hammering anymore. When I moved the sprayer back to where the drips hit my seat, I heard the sound again. It was then that I realized it was just the "drip, drip, drip" from the sprayer.
One time, I heard something strange, listened very carefully, and figured out that it was the air-conditioning coming on. Another time, I was at my desk and heard something loud that scared me. Minutes later, I felt a boom. I have found that my "hearing" is not reliable, but when I felt something, then something was definitely occurring. I was sitting in front of my computer with a window behind it with curtains. I went to get my dad, who drew the curtain, and I saw that a major storm was passing through.
My doctor believes that these strange, weird noises are just amplified by my brain with my heightened hearing and this is a part of "post-traumatic stress disorder" (PTSD). I am not crazy; this is just what happens in the brain after a traumatic episode that was extremely stressful. I have to recognize that these sounds are just amplified; nothing is going to harm me. I then have to figure out how to adjust. For instance, I found that playing "white noise" before I go to sleep relaxes me and I drift off to sleep! The "white noise" completely covers all the tiny little sounds that my brain amplifies.
I decided that I would need to start my "new life" as a deaf individual. I have found that many deaf people, both those born deaf and those who lost their hearing later in life, do fantastic, successful things and help society! I looked up a few people and found that, along with learning other strategies, they actually use their deafness to accomplish things! In college, I was headed to teach photography. However, with my TBI and hearing impairment, I knew I had to decide on a new goal. Since my new language is sign language, that is what I would need to teach with. I love teaching, so I will have to get really good at sign language in order to teach with it!
I found out that there is a difference between deaf and Deaf. The lowercase "d" refers to the physical difference of those who do not have the ability to hear speech. The uppercase "D" refers to the Deaf culture that I want to be a part of. I am deaf but working toward becoming Deaf.
I remind myself of how much I can and have achieved since I started my journey. Every journey that I have been on has been exciting! There have been some "adventures" that did not make me feel good, but I definitely learned something that would be of influence in my later days. Therefore, I am NOT going to stay stuck in depression! I will face this adventure open-armed!
1: http://whsc.emory.edu/press_releases2.cfm?announcement_id_seq=10183 (Emory news report)
Kristin currently lives in Marietta, Georgia and spends her day working on her abilities, reading, writing, and cuddling with her puppies. This article is an edited segment of "Miracle Girl." Kristin can be contacted at Kristin.Stansell@gmail.com.