Mondini-All in the family…

Mrs. Shied asks us all again to stop jingling our lunch money on our tables. I continue jingling my lunch money. I am in her second grade class and probably about seven. She is about sixty and I’m a little afraid of her due to her age and her thick glasses. A hush comes over the classroom as she marches up to my desk and says, “Mary, you did not follow directions. We will be going to lunch while you stay here and count to one hundred.” I immediately burst into tears while all the other students get in line and wave to me as they walk out the door!

It is only a day later that my mother receives a call from Mrs. Shied saying she thinks I might have a hearing loss. My parents are surprised but know I do say various words wrong….fridgelator for refrigerator for example. But then again I am only seven.

At the speech and hearing clinic it is discovered I have no response in my left ear. They decide it is because my mother most likely had rubella while she was pregnant. The doctors say I will be fine and to just make sure teachers know I can not hear in one ear.

Fast forward to sixth grade. I have a terrible attack of vertigo (dizziness) out on the playground. I go to the nurse who calls my mother and the both of them decide together that it is really nothing. I have them often and do not tell anyone since I know it is really nothing anyway.

Spring break the family goes to DC and Gettysburg and all those fun places a sixth grader should know about. I lay in the back seat of the car trying to get rid of the dizziness and hope that I do not throw up in the new station wagon. We stay with some family friends and I am so sick that we decide to visit a doctor in town. He says I have an inner infection which he can really do nothing about. He gives me medication to help with the nausea. I tell my mother I think I am going to die. She says I am not but that is what it feels like to me.

In high school the vertigo creeps up again and the doctors still cannot find a medical reason. They think perhaps I am worried about something that is causing me anxiety and which in turn causes the dizziness. I lay in bed at night trying to figure out what I am worried about. (I am mostly worried about the dizziness). We visit the ENT as I can no longer hear the clock radio on my bedside table. He declares I am officially hard of hearing and have a 45 db loss in the good ear and still no response in the bad ear. He fits me with a bi-cross aid. I am fifteen, the only girl in high school who wears two hearing aids, and knows no one else like myself. I go home and cry. My mother insists there is nothing to cry about as things could be so much worse. So I stop crying.

Fast forward to college at Ball State University. My senior year I can tell I have lost even more hearing. I am tested again and it has jumped to a 75 db loss in what is supposed to be the good ear. I am studying to be a teacher for hard of hearing children so have asked a professor of mine if I can talk to her. I tell her I am upset but know I should not be, because things could be so much worse. She tells me it is ok to not like the hearing loss. It is ok to be angry and sad and all those things. I am relieved that I can finally cry about this. I find out later in my adult years that this is an important step in the grief process for those who have progressive hearing loss. We continue to have new losses which need to be grieved for. Family members have the same issues and need to grieve as well.

I marry a hearing man as I basically function as “hearing ” with my aids and really know no one like myself. I have two children and then the vertigo comes back. I miss my daughter’s fourth birthday because I am laying on the floor in the bathroom. Jeff, my husband , takes six four-year old girls to Petersons in Oak Park for the party. He also has the twelve-month old to deal with as well. I go back to my ENT and tell him I cannot function as a mother, a wife, or a person with a full-time job. He suggests I have a CAT scan to rule out tumors.

A week after the CAT scan I get a letter saying….You have Mondini Deformity. It is basically a deformity of the structures of the inner ear. Normal cochleas are shaped differently than mine. Mine are only half the size of a normal cochlea. The other organs relative to the inner ear are also underdeveloped and intertwined. I am told this is a congenital defect meaning I was born with it, and that it is related to progressive hearing loss and balance problems. Finally at the age of 31 I find out what I have, and am elated that it has a name and is not all in my head!

Lauren is nine, Lindsay is six and Emily is one. I am now totally deafened but we are coping pretty well considering. I become involved in ALDA (Association of Late-Deafened Adults) and attend support groups for people like myself.. I notice Lindsay does not seem to be at the same stages Lauren has gone through. I take her to the Dr and he suggests we do a CAT scan as she has also failed her hearing screening. Yikes, she has Mondini. They say her symptoms are not as classic as mine so we do not know what will happen as she continues to grow. I am angry that they never told me it is genetic but of course would not trade my three girls for the world. My parents tell me there is no hearing loss or even any mention of it in the family. A scientist friend tells me he thinks it may be caused by a gene mutation.

When Lindsay gets her first hearing aids for her 45 db loss in each ear, she cries on the way home in the car. I cry with her and tell her it is ok. I tell her she doesn’t have to like it. I tell her I understand and that we will be ok! We both cry some more. I feel terribly guilty. I am worried about Jeff. He did not expect to be married to a deaf woman and now one of his daughters has hearing loss as well. He handles it well in front of me but I know he deals with it in his own way. I leave him alone and let him play a lot of golf.

As I write this, Lauren is now 20, Lindsay 17, and Emily 11. We do “whatever works” over here for communication . Lindsay does not wear her hearing aids. She hates them and yet I understand. As a professional in the deaf field I know she should wear them more often, but as a mom and a deafened person myself, I understand. My feeling is she will wear them when she needs them and eventually she will figure that out. She and I have a pact right now. As long as she does well in school, I am ok with her decision. Her Mondini issues are different than mine, too. Her loss is in the low frequencies so when she does wear her aids, they tend to make school noises very loud–desks and chairs on the floor, etc. Her audiologist has actually told both of us that she can decide when to wear them. I have had to explain this to the professionals that work with her. She now comes to her own IEP meetings and tells us what she thinks. I recently switched her to a 504 program as she was not doing well with the itinerent teacher. But we still have that pact and she knows I will switch her back or force support on her if she does not follow it. She knows about notetakers and interpreters and support systems she can have access to. She is lucky in the fact that she is living in a time where there is so much available to her. The one thing I am most thankful for is that she has not had vertigo problems. However, we still do not know where this Mondini will take her. I guess we will cross that bridge when we come to it!

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