Finding Support After Hearing Loss

Diagnosis: Accoustic Neuroma/ Vestibular Schwannoma

I was born with a 55% hearing loss in my right ear. I was always told I needed to take care of the hearing in my left ear. I found that a little humorous because I really had no idea how I was supposed to take care of that hearing. Well, fast forward to about 2007, and though I thought I was taking care of it just fine, it began to leave on its own. 

I suddenly started developing severe vertigo and hearing loss. I eventually had surgery for an acoustic neuroma and later received 2 cochlear implants. I never expected to be disabled with vestibular disorders and be completely deaf in my early 40s. It was life-changing. I missed a job I loved, I missed living a “normal” life and I missed being able to hear normally. 

I was very fortunate to receive my cochlear implants. When the first one was turned on  I was able to hear sounds fairly well. But it soon became clear I was doing a lot of lip reading. I could not understand others unless they were face to face. And I could not understand music, television, or talk on the phone. 

I made some friends that belonged to a deaf organization. I tried to take sign language.  But it was all very stressful combined with my illness. I really felt like I did not fit in the hearing world or the deaf world. 

Of course being deaf and dizzy are both invisible. I once had someone tell me I didn’t  look deaf. I would have people talk to me and I would not realize it. They thought I was  rude or ignoring them until my husband explained to them I was deaf. I tried to make  more of an effort to look at people that might speak to me. But even if they did, I rarely understood them.  

Being in a group setting was stressful and I stopped going to most social places.  Between my hearing and my vestibular disorders it was also hard going anywhere that  was too bright or noisy. Family get togethers could be difficult; even with just my immediate family. 

Needless to say, being deaf, or hard of hearing with a vestibular disorder can make life challenging and isolating. It can be difficult to explain to others. But it is important that we not isolate ourselves. We need the support and encouragement of others, especially our family and friends, if possible. And it’s also good to talk and share the  wins, hard days and connect with others that really understand what it is like to live like this on a daily basis. Whether you are new to this journey or you have been sick for a  long time, it does not matter. We still need regular connections. If you are deaf, hard of  hearing, have lost a little hearing or are concerned it may happen, it would be great to meet together. If you are interested in joining others in an online group where we can  talk, share, laugh and learn to navigate this world of hearing loss and our vestibular issues, I would be excited to be a part of it with you.