I AM LOSING MY MIND – AND MY HEARING!!!

Many of us joke that of all the things we lose - losing our mind is the worst. Somehow this quote doesn’t seem very funny with chemo fog. The other tough side effect is losing my hearing.

I was born with a severe hearing loss, worked as a rehabilitation counselor, and have lots of friends who are both deaf and hard of hearing. Several of my friends are also audiologists, interpreters and American Sign Language teachers. I helped to establish a local support group for hard of hearing and deaf people through the national Hearing Loss Association of America which existed locally for over 30 years. I can sign with my deaf friends, so one would not think losing more of my hearing would be a huge blow.

It is much harder than I ever thought. I never identified myself as part of the deaf community or culture, since I had some hearing and ASL was not my first language. I also was told by deaf people because I am oral and was able to use a telephone with my hearing aids that I am not part of this unique culture. I taught about Deaf Culture for several years at the college level. I explained to students that with their own language, clubs for the deaf and schools, the deaf are indeed a fascinating minority culture within the USA.

I felt I could somewhat identify because of the difficulty of lip-reading and the discrimination job wise and personally we faced. I was blatantly told at one point I couldn’t handle a job promotion because of my hearing loss. I had no recourse since there was no American with Disabilities Act then to protect me.

However as my remaining hearing has gradually slipped away from me, I become increasingly frustrated. No longer can I use the telephone and depend on captioning on the phone or Bluetooth in my car. I am very social, and the worst part is I can no longer be with a group of people and catch anything. I am basically all right with 1 or 2 people in a quiet setting where I can lip-read and hear with my aids. With a wonderful Bluetooth pen I attend programs and I “may” hear the speaker, but never catch any of the questions in the audience. Church has totally changed for, me. The minister makes sure I hear him and I sit in the front, but prayer requests, announcements, and anything said behind me is never understood. I only can hope the names and events will show up in the newsletter.

Recently I attended a retirement party and was so frustrated I left in tears. The party took place in a very noisy restaurant and there were people I knew and loved. Every single conversation was frustrating because I caught maybe 3 or 4 words and could not understand what anyone was saying. Imagine listing to a television show and having only one word in a sentence understood. I also have had terrible experiences on the telephone where I could not understand people and they have hung up on me.

Most of my friends and none of my family know ASL, so I have to depend on what little hearing I have left and lip reading to communicate.

Of course you may ask why not get an interpreter. They cost between 30 – 80 dollars an hour depending on which part of the country you live. They are worth every penny but I cannot afford to take them to all the social gatherings.

Many of us are suffering from hearing loss because of the lifesaving chemo we undergo. Some of us do not even know it because it is sneaky and gradual. But there does come the day that we realize our lives have changed. Some chemo’s when stopped the hearing can return, but not the kind I take.

I often think the diarrhea, the nausea; the painful shots I have endured, the bone marrow biopsies twice a year are discouraging. But nothing is worse than the long term effects like chemo fog and going deaf. I do think that we need to report these medications and hope research will try to develop chemos with fewer side effects. What we do not realize is there is no test for whether the chemo causes hearing loss or chemo fog before any drug product goes on the market. Only by us survivors telling them and reporting do they ever know.

Being a cancer survivor, like getting old, is not for sissies. However, I have to remember the mantra – I am alive and that is what really counts!