Story #2 for Brain Tumor Awareness Month
Immediately after the radiosurgery treatment, my euphoria continued unabated for a couple of months despite minor setbacks due to periodic swelling. During this time, my hearing was decreasing and after about two years, I was deaf in the AN ear.
Single sided hearing became my biggest problem in dealing with the world at large. I had no idea how isolating it would be and how socially handicapped I would become. No longer required to interface with people on a daily basis, I could spend most of my time at home in the avocado grove, gardening and communicating with the world via email and social media. In live interactions, I could see the frustration on people’s faces when I didn’t hear them correctly and when I’d request a repeat. I discouraged phone calls and requested that everyone email me. Having been a communicative person, I found myself speaking less and less; fewer words outbound meant less stress for me. I became a better typist!
I sought out and got some good advice about dealing with the negativity and embarrassment I was feeling when attempting conversation. My co-leader in the Acoustic Neuroma San Diego Support group, Wanda Crook, who has a deep level of experience with rehabilitation and support groups, suggested I treat the awkward moments with humor. This was very useful advice. Instead of a situation spiralling into negativity, the laughter put another spin on those interactions making them far more pleasant for me and I’m sure for those around me.
My audiologist was of great help. He suggested the Phonak Cross hearing system. Although not perfect, it has been of some benefit at parties and at large dinner tables. At least I can hear the person sitting next to my deaf ear.
When we go anywhere together, my husband drives. As my AN ear is my left ear, I have difficulty hearing him. The only way I could make out what he was saying was to twist my body around to get the hearing ear in position to catch a few words. Sometimes hearing a few words is worse than hearing nothing at all! My audiologist suggested using a Pocket Talker. When he first mentioned it, my reaction was dismissive; it sounded like something you’d buy on late night television. Because the device was inexpensive, I purchased one. It’s been a marriage saver - in fact, in my opinion, that would be a better name for it. I clip the microphone on my husband’s seat belt and put the earphone in my ear and we travel merrily along for hundreds of miles in normal conversation. I also use the Pocket Talker for TV listening.
The inability to locate the direction of sound has been a significant challenge. For laughs for my husband, I wrote an obituary for myself which begins, “Died as she lived, Helen was wiped out by an SUV in the Costco parking lot.” There have, in fact, been several near-misses in parking lots. My vestibular therapist suggested I grab a shopping cart immediately after parking my car in shopping areas. The cart provides stability and as they are pretty noisy the “wheel clatter” serves to alert other drivers of my presence so they can avoid me, even if I’m unaware of them.
Balance problems and dizziness are ever present. My head spins when I turn my head quickly and when in transitions when I shift my body from sitting to standing, or make a turn. Movie theatres are a nightmare. Finding my way up stairs and into a seat in the dark is challenging. I could not do this alone; my husband guides me along. I’m very fortunate to have a sympathetic mate with a steady arm and a lot of patience. Recently I began Tai Chi and find that I feel more stable after the classes because of the balance challenges.
I stagger slightly when walking and cope with this by using above-mentioned husband’s arm. When I’m alone, the shopping cart helps if one is available. Every AN person has probably had the experience of staggering to the car and while opening the door, noticing somebody watching them who is assuming you are drunk. I have learned to chuckle over this and not let it wound me.
Tinnitus is my constant companion, but I’ve found that as long as my brain is busy processing life, the tinnitus is tolerable. I notice it most during the quiet times of day when I’m reading or at night in bed. After trying various sleep medications, I now use Costco Allergy (generic for Benadryl) medicine and find it very effective. Of all coping mechanisms I’ve tried and used, the best one is sufficient sleep.
Overall I can do almost everything I wish, only in a slightly modified way. My life has changed, but I was already in a life transition, retiring, when my AN appeared. At this stage of life, I don’t miss skiing or bicycling and the Flying McHargue’s Trapeze act...well, all good things must come to an end.