Healthcare workers are, without a doubt, some of the most resilient people. Everyday they’re helping patients who are experiencing extreme adversity – yet they react with empathy and compassion.
When you’re being treated by a healthcare worker, you often don’t think about what adversity they have gone through or are currently going through. They’re the knowledgeable expert and you’re the vulnerable patient. But healthcare workers are people, too. They experience overwhelming joy and sudden tragedy, just like the rest of us. For Heidi J. Cole, her world came crashing in when she was diagnosed with an acoustic neuroma at age 29. This is her journey with hearing loss, and how she turned a moment of tragedy into triumph.
My Journey with Hearing Loss
By Heidi J. Cole, MPAS, PA-C
If you know me, you know that I’m a bit of an odd duck.
I am 50 percent right brained and 50 percent left brained, so I studied both biology and studio art in undergrad. I am still trying to figure out if I am an artistic scientist, or a scientific artist? My son just chimed in, “Mom, you’re an artistic scientist!” Maybe he is right. Ever since I was a kid, I wanted to practice medicine, but I also started drawing and painting at age 8. I am now 48, and I am finally practicing medicine and still painting and drawing. I’ve been married to the best husband for 18 years, and have three beautiful kids; a son who is 16, a son who is 14, and a daughter who is 12. I’m also a Certified Physician Assistant and work for DispatchHealth.
And if you know me, you also know that I am hard of hearing. I was diagnosed with an acoustic neuroma at the age of 29.
The first ENT (ear, nose and throat specialist) I saw for my acoustic neuroma, didn’t LISTEN to me. He dismissed my concerns and he missed a brain tumor. He didn’t even order an MRI. He also told me that I was having auditory and visual hallucinations and that I needed a psychiatrist. The second ENT I saw for my acoustic neuroma talked to me for about 30 seconds and told me, “You have a lesion on your brain. I am sending you to a neuro-otologist who will remove it next month. Any questions? Nope, okay my people will call you to get it scheduled. Now I have to run catch a flight to join my family in Hawaii for Christmas.”
I was shocked and dumb founded. I had no idea what to ask. I didn’t understand what a brain lesion was. I turned to Dr. Google to find out.
Surgery to remove the tumor cost me the hearing in my left ear. But I had perfect hearing in my right ear, so hardly anyone knew I was single-sided deaf for the first 16 years of my journey with hearing loss. I was able to adapt and moved myself so that no one was ever on my left side, my deaf side. I did all the work, and I was good at it.
But, on July 24th, 2018, my world changed in an instant.
I was working in the ER when I had a sudden bout of acute vertigo. I wasn’t sure what was happening because I couldn’t even figure out what my symptoms were at first. I made my way back to my desk and must have looked pale. My PA colleague who was on shift with me at the time asked if I was okay and I had a hard time understanding her. She sounded distorted and robotic. I felt like I was underwater and trapped in a dream. The day before, I had flown home from a trip to Chicago. I had experienced some pain in my right ear during the flight, but it had subsided, so I didn’t think any more about it. But the next day when the vertigo hit it was eerily reminiscent of how I felt just before they found my acoustic neuroma. I knew it was my inner ear again and I just couldn’t figure out why everyone was robotic sounding and sounded like Charlie Brown’s teacher — there is a wah-wah-wah with a robotic edge to every sound I now hear.
My doctor thinks pressure in my inner ear did not properly equalize during the flight, which damaged my cochlea in a way that specialists rarely see. Prior to this occurring, I only had one version of tinnitus and I call her an old friend because she’s been around for 18 years — a high-pitched squeal that I tune out on a regular basis, no big deal. But now I have more noise inside my head than I can hear outside of it. I currently have 3 forms of tinnitus — a beehive buzzing with activity, a semi-truck that is idling in my driveway, and that high-pitched squeal. These noises exist at all times and compete for my attention, when I least want them to.
But the biggest tragedy for me is that I lost my ability to make and to appreciate music. I now know that my cochlea takes each note it hears and splits it into 3 tones and unfortunately, they are not in tune with each other. When I play my piano or tune my guitar, I cannot tell which note I should be listening to. And I can no longer sing in key. No one on the radio can sing in key, they all sound horrible. Yep, music, it’s what I miss the most.
I was “fired without cause” from my ER job. I then landed a job at an urgent care and only lasted 30 days. On day 29, the head nurse came up to me and said “I am done trying to communicate with you. It’s exhausting and you never hear a thing I tell you!” The next day I was again “fired without cause” and without explanation.
This is when I hit a low. I thought brain surgery to remove a tumor was tough…but try living with three forms of tinnitus, distorted hearing, and losing music. The hearing world is a very insensitive place. I know it is frustrating to communicate with me sometimes. But I am worth communicating with. I have a lot to offer. I may be hard of hearing, but I’m a great listener.
This past March I was offered a job with DispatchHealth. I honestly feel like I have the best job in the world! I am on the front lines of this amazing company, caring for patients in their homes. Everyone is happy to see us when we arrive. I assess, diagnose, treat, educate, and most importantly listen to my patients. At previous jobs my performance reviews would often scold me for “taking too long with patients, explaining too much and spending too much time in the room.” I never thought I would find a company that values taking good care of patients and making sure they understand their plan of care so that they buy in and are successful at achieving the best results possible!
On Mother’s Day, I had a patient who was a 71-year-old female who had just gotten out of the hospital and we were seeing her for nausea and vomiting. She had been in the hospital because 12 days prior she spiked a very high fever, and no one knew why. We walked in to do her new patient visit and the first thing she said was, “I CANNOT HEAR YOU.” I reached up, pulled out my hearing aid, held it up and told her that I was hard of hearing too. She then explained that her hearing loss started 12 days prior and no one had been able to give her any answers. She had been in the hospital for six days and not one time did they consult an ENT. They ruled out a stroke, and had done CT scans, MRIs, but not addressed her severe vertigo and hearing loss. I sat with her for two hours and explained what steps to take and what she could expect. I truly believe that she was placed in my path for a reason. Having her as my patient started my journey to inner healing.
Prior to DispatchHealth, I was always fearful of losing my job on any given day. That feeling is horrible, and I developed stress-induced urticaria as a result. The biggest challenge at DispatchHealth isn’t anything company-related or people-related. It’s COVID-19 and having to wear masks. I have been reading lips for 18 years now…and I have never had to learn sign language because I can read lips so well. But DispatchHealth has been understanding and helpful. They have provided clear surgical masks so that I can read my colleagues’ lips. It also allows us to advocate for hearing loss when we are out in the community. Bringing awareness is so important!
I clearly recall when I met my team for the first time. I was apprehensive because of all of the mandatory mask-wearing. My co-worker, Barbie Lane, piped up and asked, “Do you mind if we ask you questions about your hearing loss so we know how best to help you?” And for 30 minutes they listened to my story and cried with me about losing music and embraced me in a way I have never been embraced by any other company. I don’t want pity. They do not pity me. They accommodate me, they help me, and they listen to me. At the end of the day, I know that I am part of the team and that they respect me and want me around.
If there is a nugget of wisdom I can leave with you, it’s to be patient with people that have hearing loss. It is very difficult losing one of your senses. It is MORE frustrating for us than it is for you. You only have to deal with it when I am around. It is a thorn in my side 24-7-365. If you are talking to someone who is hard of hearing and they ignore you, get their attention by saying their name and pausing to see if they look your way. Then begin talking once you have made eye contact.
And finally, my advice for those who are deaf or hard of hearing and interested in a healthcare career is to remember that the sky is the limit. Advocate for yourself. Heck, there are deaf surgeons! Do not let anyone stand in your way and fight for your rights.