Voices Across America

My Patient Story

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Darcy

State: Kansas
Congressional District: KS02

Diseases

Ear / Nose / Throat Disease, Migraine

Issues and Challenges

Darcy has encountered: Transportation, Invisible Illness

My Story

I have always been a shy introvert, but now I have no choice if I want to have a conversation with someone. I have to look at people, face to face, in order to understand what someone is saying to me. I no longer sit in the back row; you will now find me front and center.

I lost all of my hearing 13 years ago. I had a job I loved and planned to work there until retirement. Then illness hit. Two years later I finally had a surgery hoping to help my daily vertigo. It did not work and
I lost my hearing
I had to leave my job
We had to downsize our home
Life as I knew it was no longer

I lived between the deaf and the hearing world. I didn’t know sign language. I got bilateral Cochlear Implants that did give me sound but I could not understand many words without lip reading. Music was screeching noise. When I was around more than a couple people it just sounded like a lot of mumbling. It became very isolating along with being sick with chronic Migraine and vertigo from Meneiere’s disease.

It can be very hard and tiring to lip read and try to be independent. I cannot hear on any regular telephone. Shopping, ordering in restaurants, and going to doctor’s offices can all be difficult. Now with masks during the pandemic it has been especially hard to communicate with people. I cannot always take someone with me. Thankfully there is technology for interpretation available that does help, but it isn’t perfect.

There have been times when I have had to travel by plane by myself. This has been the hardest situation for me. While I am very proactive about advocating for myself and I always tell airline officials I am deaf and ask for their help it does not always work well. I have to push through that shyness and ask strangers too. There are numerous airports that do not have those big boards that show when flight times have changed or have moved gates, or even terminals! Needless to say there have been stressful situations.

American airlines are not covered under the American Disabilities Act but are covered under the Air Carrier Access Act. It requires airlines to take steps to accommodate passengers with disabilities. They cannot discriminate; and aircraft, facilities, and services must be accessible. Passengers must also self-identify to airline personnel that they are deaf or hard of hearing if they wish to receive accessible information.

While I am sure most airlines do follow these policies, it has been my experience that it is not always followed. There were not always directions available for deaf to follow when plane changes were made. I also cannot understand announcements made over the intercom and many times, even when they had me sit in priority seating, they did not tell me of any changes.

Thankfully I always arrived safely at my destination. But hopefully in the future airlines will get better so those that are deaf and hard of hearing can fly with less stress.

It's been a few years since I have flown, and I did not start advocacy work until two years ago, but I think my airplane experiences still helped shape my interest in working to help others - especially those with an invisible illness. I still remember shortly after losing my hearing when someone told me “You don’t look deaf.” It made me laugh but I wondered just what I was supposed to look like.

We are not our disease and hopefully one day we can be treated like those that are healthy too.

My Motivation and Inspiration

I am motivated by my faith and my illness. It sounds odd to many people but once I got over the trauma of not being able to work anymore (I REALLY loved my job) and the life changes of living deaf and being sick a lot, I began to love life in a whole different way. I appreciated living at a slower pace and seeing the every day beauty that I used to take for granted. I started to find something joyful in every day. I was grateful for the life I had and that it wasn't worse.

Not every day is easy and I have my share of pity parties that no one but me attends, but I realized I wanted to encourage and help others in any way I could to live their best lives too. I found working in Migraine advocacy was a great way that I could help others, through educating and encouraging them. And along the way I have made so many amazing friends and I know it helps me probably more than I am helping them. I am excited to see where this journey takes me.

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