By: Anne Marie Killilea, MSN, RN
On January 19, 1999 I woke up to a whole new life experience… I could not hear. After taking the first dose of a macrolide antibiotic the previous evening, I now found myself almost completely deaf with very little residual hearing. I was frightened, confused, and very sick. I could not communicate. My family did not understand what had happened to me and insisted I just needed rest and things would return to normal. But I never regained my hearing. I felt isolated and very much alone.
My overwhelming fear was if I was going to be able to continue onward in my nursing career. Nursing was not the type of profession which easily accommodated persons with disabilities, especially someone who was deaf. There were no electronic stethoscopes which combined an oscilloscope and an ultrasound machine to be able to pick up certain body sounds in various sections of the body. The ADA at that time was not strong enough to support someone like me with hearing loss to remain in my nursing position by the bedside. Nursing positions were all inclusive and there was no divvying up of nursing duties to help accommodate anyone with hearing loss or other disability. Hence, I lost my first nursing job as a manager of a Special Care Nursery.
I felt lost and alone and, my husband and children noticed that my hearing loss was not going to improve. I was put in contact with Karen Keefe who at that time was an active member of ALDA in my community. I met with her, and we talked, talked, and talked some more. She took me to one of the ALDA meetings where I met other people who lost their hearing during their lifetime and knew how to change things in their lives and rise from their experience. At first, I laughed and said, “Who wants a deaf nurse?”
Karen Keefe was a bilaterally deaf person who used cochlear implants (CI) to hear with. She stirred in me to question whether I would be a good candidate for such a hearing device. I proceeded to get the MRI and discussed plans with the cochlear implant team. I was a very good candidate and opted to be implanted in my ear that was not serviceable with a hearing aid. I was implanted in my left ear in May of 2004, and the CI was activated in June. My right ear was implanted years later in June 2008. Initially, when I turned on my speech processors everything was so LOUD! I had forgotten how loud everything was in the world. I could not sleep that night…I just wanted to stay awake and hear everything!
Gradually I learned I could do other things in nursing which did not need my hearing to provide nursing care. I could teach and set up programs in Nursing. I could do computer programs for in-hospital reporting. I could do discharge teaching and connect hospital patients with community health nurses. There were things I could do and problems I could tackle! And I even began to notice issues in the hospital because of my hearing loss.
One of the most poignant problems I noticed as a late-deafened nurse was that hospital workers did not know how to communicate with D/deaf/hard of hearing people, and on the flip side I noticed that those who were D/deaf/hard of hearing did not know how to convey their medical needs to healthcare workers. I immediately got to work and designed two teaching tools to address both sides of the communication problem in the healthcare field. I designed two powerpoint lectures: one which taught hospital staff how to communicate to those who were D/deaf/hard of hearing and the other one focused on teaching all hospital staff and workers how to communicate to D/deaf/hard of hearing individuals.
Being a late-deafened nurse gives me the unique ability to see both sides of the healthcare problem, and I can use my nursing background and all the education I have gained by being a late-deafened person to create a teaching opportunity to help others how to communicate. Since designing these powerpoint lectures, I have spoken around the country helping those with hearing loss how to communicate to healthcare workers. I have spoken to several local and state (ALDACon, Oregon in 2018!) conferences. I have offered and given lectures to nursing schools. Within my state I have given lectures to several hospitals teaching healthcare workers how to take the time to learn how to communicate to D/deaf/hard of hearing individuals, with an emphasis on late-deafened people.
But there was so much more I could do expanding the perimeters of nursing to teach people how to communicate to late-deafened people. Not only did those in the nursing field need to learn how to accommodate deaf and HOH nurses, but people outside of nursing also needed to learn.
My hairdresser has learned how to cut my hair according to how my skull has changed after the cochlear implant surgeries. Sometimes there are bumps under the skin and she was careful to cut my hair evenly based upon how my implants are located. She even takes the time to examine the skin around the magnets and lets me know if there is any sign of tissue breakdown. After she cuts my hair, I put my external pieces of the CI on and she checks to make sure my hair is even on all sides. She has even taken her learning how to cut my hair and has taught others to be mindful and sensitive to the needs of others with various external assistive hearing devices. How awesome is that?
I am a Bereavement Minister at my church, and I also play in the Handbell Choir. Because there are so few of us to help with the Bereavement Ministry, we are pretty much spread throughout the church during the Funeral service. Communication can be very difficult if things need to happen or change. I have taught some of the women some simple sign language for us to use to communicate quietly and make sure the service runs smoothly. Because I do not hear every note played by the handbells in the Handbell Choir, I have taught two women some sign language to help me get through the music pieces, and it has been very effective for me. Because of this help, one other handbell player admitted she can’t hear well and now we all help each other to keep on track when we play the handbells at Mass. We haven’t tapped into the many uses for sign language in everyday living.
In my community I also am active in the Commission on Disability. Due to COVID-19 we have monthly meetings through Zoom. At the beginning of the pandemic, I had to ask for closed captions (CC) 14 days before each meeting. I thought this was strange but went along with this request. One month I had asked for CC and the ADA coordinator did not see my request. There was no CC for the meeting. I was upset that there was not going to be CC and told them so. Why should my requests be left out? Feeling extremely angry and left out, I then said to cancel the meeting because I need to be able to understand everything. Everything got quiet. Within two hours, CC was put on the Zoom meeting. Since then, CC is a basic service included in every city-wide meeting.
I am not going to say that being HOH is easy. I am not going to say I appreciate every time I was sneered at or inappropriately spoken to so that I ended up being excluded from a conversation. But, I will say that I am very proud of my hearing loss, what I learned from being a late-deafened person, and what I have taught others to do. When I was in nursing school, I can remember one paragraph in a Medical-Surgical book dedicated to teaching nursing students how to talk to the deaf. One paragraph! And, there was no differentiation between Deaf and deaf cultures! How times have changed!
Being proud of being a late-deafened adult does not mean I am better than anyone else with a different disability or no disability. I have created a lot of learning and teaching tools for those who want to learn how to communicate with us when we are sick, need a haircut, want to play in a handbell choir, or want to log onto a Zoom meeting and be able to fully participate in it. In doing so, I hope I have created positive pathways to follow for those who may become deaf in the future.
Late-deafened and proud of it!
Stay safe! ALDA cares about you!
Anne Marie Killilea, MSN, RN