Until I was 26 years of age my hearing really didn't bother me. There were times when I had trouble understanding people and the world around me but I don't remember being greatly affected by it. It didn't hurt me on an emotional level that I was deaf. I worked at a fast food/delivery place for a few years answering the phone for delivery purposes. I don't remember but maybe 10 times if that, that I had to have someone take the order because I didn't understand. Sure, I was frustrated from time to time by situations among my co-workers and one of my bosses but in general I don't remember it being too bad.
After I left the fast food place I went to work at a nursing home. I do remember having more trouble there as people were always speaking with their backs turned to me. Or maybe while reading reports they'd mumble and look down so that I couldn't see their mouths to help with facilitating my understanding level. I remember at some point my Vocational Rehabilitation Counselor brought in ear plugs and held a meeting for those who worked with me to help them understand how to communicate with me better. But even then I don't remember my hearing being that big a deal.
Then the bottom fell out of my world. Aug 6th will be forever engrained upon my mind. That is the day my hearing basically went away. We came back from a trip to Las Vegas and after I got off the plane I barely heard anything. My hearing remained down until September 1st. By down I mean even when I had my hearing aids in I didn't hear words or understand sounds. Everything was a mumble if it could be even called that. I felt lost and confused. Suddenly everything was dark and ugly. People who I thought of as my friends disappeared because they didn't know how to communicate with me. I tried to keep working even though I didn't understand what anyone was saying to me. September 1st was my mother's birthday. We went boating in Kentucky. That day I heard well enough to make out some music and understood some of what people said. By the 3rd of September that was gone again. It remained gone for like 3 weeks then was up again for a few days and so on all fall. I never was able to accept what was happening to me before my hearing would return and then disappear again. This up down roller coaster I was on royally messed me up emotionally. I couldn't grieve for my loss or go through the grieving process because of this yo-yo affect.
I did go to my Specialist and had Audiograms almost weekly. These showed my hearing was fluctuating wildly from week to week within a very low range. Some weeks I was able to hear sounds that the next week I wouldn't be able to. My specialist at one point determined it was partially my hearing aid that was malfunctioning. It was fixed and I sort of heard for about 3 maybe 4 weeks with a wild fluctuation. Then my hearing went away again and remained gone from Dec until Feb 3rd. It was pure and utter insanity from which I never have fully recovered. I am still waiting for the other shoe to drop. I live in constant fear of the day when it disappears again and this next time there is no recovery of sound.
I fear what my life will be like if my hearing going away happens again. Until I started taking classes here at Wolf Lake I was extremely afraid of going completely deaf and not being aidable. Now I'm not as afraid because I know that as long as I have contacts within the Deaf Community I won't have to suffer through what happens to me alone unlike when I was 26. When I was 26 even my own parents were cruel to me. I know they weren't intentionally but they only saw things from the hearing point of view. To them I was an embarrassment. I remember Christmas Eve that year vividly. We'd gone to Church. I wasn't hearing anything. My mother asked me a question. I replied but apparently I replied loudly. I have no idea of volume when I can't even hear my own voice. I talked at a volume where my voice sounded relatively normal to me but to everyone else it was loud. My mother was aghast. She jerked around and pinched my lips together. I was crushed. I hadn't done anything wrong. Everyone around us and even the whole church knew what I was going through but there was my mother pinching my lips together because I had dared to embarrass her by speaking too loudly.
I think I gave up talking almost entirely after that incident until my hearing stabilized in early February because I was made to feel that I was wrong and an embarrassment. Living through all that happened in those 6 months that my hearing went up and down at whim is not easy for me to talk about. How I felt, what people and my family did to me…. I should have had help but there was none. I should have had support but there was none. I know I can't ever go through the same set of circumstances again. I won't survive. I barely survived the last time.
It is because of this dread of the past and how it could affect my future that I cling so hard to the Deaf people now in my life. I don't want to lose them for fear that if I do I will be alone again. I think that it is really an irrational fear, now. I don't think that I will lose my Deaf friends unless it is I that turns away from them and not the other way around. But occasionally the fear still tugs at my mind and I panic a bit until my rational side can take control again.
At the same time that I fear losing Jane and Emily I also fear holding on to them too tightly. I am afraid that in my need to keep them in my life I will smoother them. That is why I never pushed Emily after the Ultrasound that showed the loss of the twin to go with her again to any appointments. Of course, I would have loved to have seen some of the past ultrasounds but I didn't feel like I should insert myself so fully into Emily's life. If she wanted me to be a part of that aspect of her pregnancy I felt she should be the one to say something to me. She didn't so I didn't ask.
Since that 1st ultrasound I have found out something I didn't know about how Deaf function in medical settings. If they know they are going to say an Obstetrics visit they would call an interpreter to be with them or the doctor would set one up for them. Then from that time on throughout the pregnancy or whatever that same interpreter would be with them at all appointments and such. They'd also be there for the delivery to facilitate communication and make the mother and the doctor more comfortable.
I had wondered initially about the privacy issue. I mean who would want one more set of eyes looking at them that they never had met before during some of the most intimate moments of their lives? Then I met a interpreter who was formally a nurse who supplied me with the information about how she works and that it would be from the get go for an expectant mother through delivery and postpartum at the hospital. Because she's there from the beginning in such medical cases usually the privacy aspect isn't so great because her clients know her and feel comfortable with her. But she also is only there to pass information that she hears in English on to the mother and then voices what the mother says back to the doctor. She doesn't generally see things beyond her client's hands and faces. If there is a need for privacy especially with male clients she asks if they want her to step out of the room during such and such and return later to help explain what is going on. This seems to work well most of the time. I found what she told me quite interesting and was glad to learn that there are people like her available to the Deaf community.
It was this nurse/interpreter who was with Emily for all her prenatal visits thus far. I had met her when she came to our class in the first summer session and talked about her job. It was only later that I learned that Emily was her client as well as her friend. Emily trusted Sharon explicitly and felt safe with her.
There was one thing that I wanted to witness, out of curiosity more than anything else. The curiosity stemmed from my biology background and also my support group. I had seen many Level I ultrasounds and pictures in the past. Heck, I can even read some of them. Well, at the least, I can pick out spines and arms and legs on the prenatal ones. But I had never seen a Level II ultrasound performed or the pictures from one. I'd heard of them in detail but never seen one done. I wanted to see Emily's. But there was another reason too. I think I might have wanted the assurance for myself that her baby was okay. If I saw with my own eyes that things looked good then maybe I could relax and be excited for her.
I didn't want to ask her if I could go with her. I just hoped that somehow she'd figure it on her own that it would be something I'd want to see. I know it was not the best way to communicate but I'm a chicken at heart.J. It was with this wishful thinking on my part that Emily headed into her 19th week of pregnancy.
I knew she was scheduled for her Level II after class on Monday one week after summer school class started. A level II ultrasound, maybe I should explain a bit, is a more detailed ultrasound than a person normally has. It shows detail with higher image resolution. A skilled Ultrasound technician can locate all four chambers of the fetus's heart, can see in detail the lobes of the brain, kidney function and so on. Almost anything that is indicative of a problem can be seen with a Level II US. However, mistakes can be made and sometimes there is a problem with no outward indication. Babies can be born having Down Syndrome where the Level II didn't find any markers indicating that the baby had that Trisomy. It is rare that it happens but it can. Usually if the Nuchal Fold Translucency comes back within normal range or the Triple Screen comes back in an okay range for the mother's age plus the Level II looks good then there isn't the push for an Amniocentesis. (Triple Screen is a Blood Serum test that measures maternal hormone secretions and other things to give a percentage of risk for genetic defects including spina bifida). Doctor's want for women to have at least 2 of the tests to rule out the need for an Amnio.
Chorionic Villi Sampling AKA CVS is another chromosomal test that gives genetic birth defects but it can only be done between like the 11th and 14th week of pregnancy. It has a higher miscarriage rate associated with it than Amnios so many older women forego this test for safer methods of detection and only use Amniocentesis as indicated by the presence of markers for a problem following a Level II US.
I sat that Monday in class watching Emily's every move. I still didn't know a lot of her signs when it came to class stuff so I had to listen to Nancy with my ears, try and take in Emily's signs with my eyes and match the signs to the words they represented. But as usually my mind would drift to other things after a while because the concentration required for me to take in both auditory and visual input was so mentally taxing. I daydreamed the second class period away. My poor teachers never get my full attention. I seem to do better in my ASL classes when it comes to my attention span. But then again I only have visual input for those teachers instead of both auditory and visual.
After class I followed Emily to her office. Somehow I am beginning to feel like a puppy following her master home, as I always seem to be following Emily somewhere. I waited for her to clue into my presence. I'm sure she knows I'm there long before she acknowledges me. She tends to finish what she is doing before looking up with her smile and signing, "What?"
"You have test today?" I signed
"Yes, I'm nervous."
"It doesn't hurt. From what I have been told it really is very interesting because you see everything. They should be able to tell if the baby is a girl or boy now. Do you want to know?
"No, I want to be surprised."
"That's cool. I'd be like a kid in a Candy shop. I'd be dying to know. I'd love to see how a Level II is preformed. They sound amazing."
"Is that a backhanded request to go with me?"
"It is if the answer is Yes." I laughed.
"Sure. I have no one else who is interested in the details. Sometimes it makes me sad seeing couples in the mall with the father walking with his hand on his partner's stomach. I will never have that. I don't want that from Jack but it would be nice to be able to share with someone. My biggest regret besides Jack is that I'm so alone in this. My friends my age are waiting on grandchildren. They have had their families and have moved on to their time, the time of a second self-discovery, who they are after they are done raising their families. And here I am just starting and finishing mine. I've never feared much in my life but I fear going through this alone," Emily signed as my jaw hit the floor.
I was shocked by her admission of fear. Sure I knew what she meant by being alone but of all the women I knew they all had some sort of family support from sisters, significant others (Female Companions), to good old mom and dad. They all had some sort of safety net. Emily was truly walking the tightrope of motherhood without anyone save her friends. Her friends were done with what she was going through or had never gone through it to start with. So who was she supposed to turn to for help? "I wish you'd said something to me before. I'm not good at asking questions. I never know what to ask. But if I had known how you felt before now I'd have said I'd go with you anytime you just wanted someone to be there WITH you."
"I didn't know how I felt. I don't analyze my feelings often."
"I know. I'm the thinker here." I laughed.
She signed an exaggerated, "YES."
We went in her 4 X 4 SUV to the best Hospital for High Risk Pregnancy in the area. The same one my Aunt gave birth to all 3 of my cousins at. It's a great hospital and has a terrific Neonatal Intensive Care Unit. I was glad that was where she was having her Level II because I knew that she'd be getting only the best Technicians and care.
I watched the proceedings intently. Sharon had met us in the waiting room. She seemed surprised to see me. I said in English, "I'm here for moral support and out of curiosity." She smiled and that was the end of her acknowledgement to my presence.
The ultrasound itself was a long drawn out process but was very interesting to observe. Everything looked beautiful according to the Technician. Because Emily said she didn't want to know the sex, the technician didn't elaborate but I know how to tell and kept what I saw to myself. It was also somewhat sad to watch the screen because the twin still hadn't been fully re-absorbed. Its presence was still marked by a gray mass that was labeled Baby B. I fought back tears and tried to smile for Emily's sake. I hoped she could take all the joy at seeing her "healthy" baby so full of life, moving, kicking, sucking on its little fingers and forget the sorrow of death that lingered within her body as well.