SayWhatClub Board of Directors
The SayWhatClub Board of Directors can be reached by email at: firstname.lastname@example.org
My hearing started to decline when I was 19 and gradually diminished through the years. In my late 50ies, it dropped to the profound level, making communications a struggle. Today I am grateful for my bilateral cochlear implants.
A classic late-bloomer, I spent the first thirty-five years of my business career selling midrange computer solutions. After I launched the Hearing Loss Revolution and it’s Nine Guiding Principles, (now the Hearing Loss Evolution), I discovered my true
calling – advocating for people with hearing loss. I do this through education by giving workshops, and presentations, but also coaching individuals, helping them to come to terms with their hearing loss. (More details at www.HearingLossEvolution.com).
I’m a proud graduate of Gallaudet University’s two year Peer Mentor Program. I started the HLAA-Morris County Chapter and today am its Immediate Past President, a Trustee for the NJ HLAA plus a representation on NJ DDHH. I also am honored to represent The Communicator, the clear mask for people with hearing loss.
I am a long time member of SWC. I joined in 1996 (or there about) on the Connect list where I have made many long time, close friendships. My home town is St Paul, MN where I Iive with my two cats. I am retired from full time careers in many areas, the last was teaching. Crafting is my passion. I love my part time job in retail at a major big box craft/fabric store. It feeds my crafting addiction.
I started losing my hearing in the 4th grade, but it went undiagnosed until college. After being double tested by the school nurse, my positive response to her inquiry about swimming all summer led her to dismiss her findings. This went on through junior high. In hindsight, I recognize many behaviors during those years and high school as indicating hearing loss. My family life was a bit messy during that time with moves, divorce and general life that no one noticed.
Me? I didn’t know I was different. I didn’t know others could hear the phone ring from a different room, or that they could follow the conversation in a dark car. When you don’t know you can’t hear, you don’t know what you’re missing. I didn’t know other students heard every word the teacher said, or that musical instruments made sounds after high F. I didn’t know.
A nasty bout of tinnitus caught my mother’s attention while I was in college on a vocal scholarship. The family doctor sent me to a specialist who said I had pretty ears; they just didn’t work. He didn’t recommend hearing aids at that time, but declared a 50% loss. Hmmm. I graduated with a 3.7 average, and went off into the work world.
Two years later, my hearing took a drop, and I got hearing aids. A couple of decades or more later, I got a cochlear implant and it absolutely changed my life. Throughout it all, I have been up and down. I fought the good fights, and succeeded in life with technology, determination and skill.
Since the 1990’s, I have been an advocate for hearing issues. I served on MN Commission serving Deaf and Hard of Hearing People. I served as President of MN Chapter #1 HLAA, as well as State Coordinator for HLAA. Additionally, I edited the Chapter #1 newsletter. I served on the MN Hearing Instruments Consumer Advisory Panel, and on the Qwest Consumer Advisory Board. I was Hard of Hearing Program Coordinator for Doorways, a local non-profit. Through Doorways, I developed Hearing Through Older Ears, a program geared to educating Seniors about life with hearing loss. It also targeted caretakers and businesses serving HoH Seniors. On SWC, I served as a List Rep for Connect and been involved in the planning of Conventions. I look forward to making more friendships on SWC in the coming years.
I grew up with normal hearing, and lost hearing on one side, due to a blow to the head, when I was 38. Now, I am considered a late-deafened adult. My hearing continued to drop, after I began using hearing aids. Then, the other side started going also, for reasons unknown. As my hearing loss escalated, I wore more and more powerful hearing aids. Finally, I qualified for a cochlear implant. I now have bi-lateral cochlear implants.
After my experience, I became an activist for people with hearing loss in the workplace. When situations arose regarding staff with hearing loss, I became the go-to person for my Human Resources Dept.
I made a conscious decision not to be a victim. In 1999, I joined SWC, when I was at the lowest emotional point in my hearing loss journey. I promised myself I would never cry over it again, but I would educate myself and learn to live inside of it. Wherever I go, I am proud to educate and advocate. I do not hide my hearing equipment, but show it proudly and am always open for discussion or questions.
I worked for a large government legal agency for thirty-one years. Recently, I retired. In addition to my SWC activities, I am on the executive team for Virtual Ability, a non-profit that assists the disabled in virtual online accessibility issues. I am glad to be able to re-join the SWC BOD at this time in my life, to be able to give back. Much of my success in my hearing-loss journey is because of SWC. The people here have long surpassed online acquaintances, and are now lifelong friends.
I am married, my husband and I have five grown children and three wonderful baby-grands, that we love dearly.
My hearing loss began when I was a teenager. It was most likely due to an unknown auto-immune disease, or possibly the measles contracted earlier at age seven. No one knows for sure as it was a very slow decline. It continued to deteriorate for the next several decades until I became profoundly deaf. In 2011, I received a cochlear implant with Advanced Bionics HiFocus electrode array on the right side.
I wear an AB Q90 processor on the right and its accompanying Phonak Naida Link on the left side. The rehab support and suggestions I received from the SayWhatClub CI List shortly after implantation was invaluable.
I joined the SayWhatClub in 2002 and attended my first SWC convention in Seattle the following year. It was an incredibly uplifting experience to be around other people who understood hearing loss. The support I received these past sixteen years has been vitally important to my sense of well-being.
I learned about all the gadgets that could make my life easier with hearing loss. More importantly, I learned how to advocate for myself in an assertive and direct way. Over the years, I have held positions on nearly every SWC committee.
Additionally, I serve on the board of directors for the Washington Communication Access Project (Wash-CAP). I have been their treasurer since 2014 and on their board of directors since 2011. Wash-CAP’s focus is on promoting captioning access for the deaf and hard of hearing. They target business venues, public buildings, and anywhere deaf, Deaf and hard-of-hearing people need captioning access.
I am a married “empty-nester” living in the Seattle area. I work part-time at a public library. Reading is a favorite activity, of course. I also enjoy gardening, hiking, folk music, making pies, knitting and crochet, not necessarily in that order.
It was a surprise when I was nominated for the board of directors in 2016. I wondered what kind of contribution I could make that would have a positive impact on SWC and its subscribers. One of the best things about the SayWhatClub, in my opinion, is its Mission Statement. I realized that if I let our Mission Statement guide me, everything would fall into place. So far, I haven’t been wrong about that.
I am profoundly grateful for the peer support I have received from the SayWhatClub since 2002. SWC gave me coping skills to manage the everyday challenges of living with hearing loss. Through SWC, I gained the courage to advocate for myself, and the hope that I could lead a normal life. Thank you, SWC!
I was born with hearing, but it rapidly declined and was diagnosed with a progressive bilateral sensorineural hearing loss (severe in left ear, profound in right ear) when I was 2 years old. With hearing aids, assistive devices, and lots of lipreading, I was able to succeed for most of my childhood. However, my deafness became a much more significant challenge by the time I was finishing high school and entering college; I was consistently using the most powerful hearing aids on the market and constantly exhausted from endless lipreading. I was becoming very disenchanted with trying to blend in as a Hearing person, and was also stymied by how to learn American Sign Language and integrate into a local deaf community.
I came across SayWhatClub while trying to search for a community that reflected who I felt I was: definitely not Hearing, but not culturally Deaf. SayWhatClub showed me a way to embrace my Deaf identity on my terms, learning from other people’s own hearing-loss experiences and feeling accepted in a community of people who understand the diversity of how hearing loss manifests. Whether deaf from birth, experiencing a progressive loss, or late-deafened, SWC’ers are a spunky, cheerful, helpful and compassionate bunch, and I’ve never felt so accepted and included. It is very important for us to have our own space to be who we are, ask the kind of questions only someone else who has been there can answer, and sometimes open up about how hard our experiences can be.
I recently finished a graduate degree in Information Science, and hope to be an academic librarian someday soon. For now, I work in a university library as a program manager, supervising a mid-size team of staff to operate a program that helps students save money on their class materials. I spend a great deal of my time outside of work with my family, raising a beautiful daughter with my wife, traveling around the state in search of new, great craft beers and lakeshores, or hobbying-‘n-crafting dioramas at my workbench!
My hearing loss and tinnitus began when I had high fevers with measles at age 8. I was not tested until I was in college and got my first hearing aid then as well. I have a ski slope loss in both ears that goes to profound in the high tones.
I managed for a long time, adding a second aid years later, but as I got older it was more and more difficult to follow conversations. Audiologists suggested a cochlear implant, but I knew no one who had one and it seemed like a very drastic action. I attended the 2016 Hearing Loss Association of America convention in Washington DC, in an effort to learn more about cochlear implants. I asked someone I met there for ways to meet other people with hearing loss. She told me about the Say What Club, and I signed up right away. The support I received was instrumental in my decision to go ahead with the surgery for an implant in January 2020.
For the past 41 years, I have worked at a nonprofit community based organization, in a variety of roles. I am currently a financial compliance coordinator. My husband and two children are great enunciators, and are amazed by my new bionic hearing ability. I am a lifelong New Yorker, love to read and travel.