Yes, I really did this. I bought my own book on Amazon. I just wanted to. To confess something even cornier, I send it to myself as a gift, with a note. Furthermore, I am NOW sharing that tidbit with the world. I’m ok with that. . . sometimes we just need to take a minute to celebrate our victories! Note to self:
“A gift from Sally Stap:
Enjoy your gift! Congratulation self!”
Yippee
Lesson Learned from Brain Surgery – Never underestimate the power of caring
In the hospital following surgery, I learned the power of caring and compassion.
Even through my fog, I was keenly aware of how kind, attentive, and caring everyone was. The nurses were used to seeing such carnage and told me how I was doing at each stage of recovery. They were experienced enough to judge. They would pause in the middle of their hectic shift to talk, encourage, or put a hand on my blanket.
Kayla always pushed me to do one more thing. Dad was there to talk or to crack a joke. They saw me, and not the horrible, ragdoll me. Kendra called from Europe and sat on the phone with me, caring through the air waves. My brother and mother called and encouraged me and reminded me that it was a good thing to still be alive.
Sorry to be a bit gross, but I was dizzy after having my brain jostled and was sick frequently. All people involved with my care accepted the normalcy of handing me a barf pan or cleaning up what missed it. I can’t describe how caring and gentle that was – as strange as it sounds.
It LOOKS normal enough. . .
…wow – this turned into a LONG post…
Single sided deafness (SSD), losing all hearing in one ear while still having normal hearing in the other, is a bit odd. At first, I didn’t notice it or even believe it. But then again, I had just come out of brain surgery, pain was stunning, and my head was wrapped in gauze. Hearing wasn’t at the top of the list of things to worry about.
When I did start to focus on it, there still didn’t seem to be any difference. I was in a private hospital room and could hear anything that was said in the room. No problem, I thought – I’ve got this.
Then I started to notice little things. If I laid my head on my pillow with my good ear down, it was very quiet except for the sound of my heartbeat. That was actually kind of a good thing. I always sleep great with my good ear down. Noisy hotel room? No problem – left ear to pillow!
As I recovered and found myself in noisy settings, I quickly learned what the issues are. . .
– I have to mute the television if I want to talk to someone in the room.
– If I’m driving, it’s a challenge to hear my passenger talking. My good ear is toward the window and road noise, my deaf ear is pointed right at the talker. Listening to the radio and talking in the car isn’t even an option if I want to understand anything.
– When talking on the phone, I have no idea what someone next to me is saying on the side, like “order fried rice too”, or “tell her hello.”
– In a store one day, I heard someone far away asking someone if they needed help. Then I realized that it was a sales person standing right next to me talking into my deaf ear.
– Think about this a bit but When people hug hello or goodbye, it’s generally with their head to the right of my head. Whispering something into my ear, like “Good to see you”, or “Let’s do it again” is lost on me. My nephew asked once to be reminded of my deaf side so he would be able to whisper his Christmas wish into the ear that would hear it.
– At a restaurant, I’ve learned that background noise is an issue. I can’t hear the server taking my order but I can tell you that the person on the other side of the restaurant was talking about their weekend. The brain loses its ability to differentiate background and foreground noise like it does with two sided hearing. Not sure why.
For awhile, I decided to barrel past it. When servers asked me a question I didn’t hear, I pretended that I knew what he/she was asking. However, I learned that it didn’t really work because I would answer the wrong question, causing more awkwardness than if I just ask for a repeat.
Adaptations: So, it is what it is, right? So I’ve adapted in some of the following ways:
– I let someone else step up to a hostess in a restaurant to ask for a table.
– My family and friends know, so when in restaurants or stores they simply answer the question for me. It’s surprising how many times I don’t even know I am being spoken to. I’m ok with help and appreciate it.
– If ordering Chinese or pizza, I hand the phone to someone else, as I can’t hear anything but the phone conversation. Then I say things to them on the side because I know they can hear me. (tee hee)
– I’ve learned to just tell people, “Sorry, I’m deaf on that side. Could you repeat what you said?” It generates some alarm in their eyes. They are embarrassed or apologetic. Sometimes I’m not sure if it’s for me or them. I am no longer awkward about it. I just laugh it off and have learned that it’s ok.
I realize that in some ways, being SSD has allowed me to be less of a control freak, and let others handle little things that I don’t really need to! Learning to let go, laugh a bit, and not allow it to be MY awkward issue has helped immensely.
After surgery to remove my acoustic neuroma brain tumor, I learned that the surgeons needed to remove my auditory nerve. I also learned, as my doctors had predicted, that I still had tinnitus, or ringing in the ears. It’s always there, but I have learned to ignore it – unless, like right now, I’m trying to describe it 🙂
Walking on the beach is the only time that I “kind of” don’t hear it because of the waves. Walking the beach and getting a short break from the ringing is always soothing to me.
Many people are confused by tinnitus – in general. And those of us who are single sided deaf finding it even more puzzling. In trying to find answers, I’ve done some digging around and asking. It isn’t really understood, but one description made sense to me. The sound is in the brain — not in the ear or nerve itself. The brain, struggling to hear, has turned up the volume. Being deaf in one ear confuses the brain because there is nothing to hear, so it turns it up again. Thus, louder ringing than prior to surgery.
Tinnitus is frustrating, because like headaches, you can’t always describe it OR prove its existence. It has different sounds for each individual. For me, it varies in volume throughout the day. Noisy settings will cause the volume to increase for hours afterward. It’s louder in the morning right after waking. And I have a change in pitch if I move my eye in any direction.
Tinnitus is not currently curable. Research is looking, and there are some therapies available that condition your brain to better cope with it. I have not pursued anything at this point.
I recently learned of the following website, which has recordings of different types of tinnitus. Mine is a combination of screeching and tea kettle sounds. You may find it interesting to find your tinnitus sound:
http://www.ata.org/sounds-of-tinnitus
A sense of humor will give you a better temperament than frustration. Learn to laugh at yourself. It will help you to feel less self-conscious.
My family is always joking around about things and it was no different with brain surgery. We laughed about pretty much everything that we could to help lighten the heavy burden that we were living. When I say “we”, it did not escape me that even though I was the one in bed bandaged and tangled with medical equipment, “they” were tasked with keeping my spirits up.
When I was home, we laughed when my brother had to push me up the stairs because I didn’t have the energy to make it by myself. We laughed that I used a ski pole to navigate before I got a cane.
In Florida, when I listed to the right while walking on the beach, my friends were always between me and the ocean. “No way. I’m not going to tell your family I let you walk alone and you veered into the ocean.”
When I give the wrong answer to a waiter’s question because I’m trying to fake that I actually heard, it’s humorous to see their expression when saying that I’ll pay my bill with “French fries, not chips.”
I always strive to be a “Pleasant Miserable” Person when I’m having a bad day. I strive to find laughter and joy from a vantage point that is, simply, ridiculous. A Brain tumor? Deaf in one ear? Unable to smile normally? Unable to move because of head pain more often than I want to acknowledge? Yea, you gotta laugh. . . once you stop crying.
Sometimes you need a thick skin (From Gabby) – “I’m here! Let me lie on top of you with my whiskers in your face. OH, sorry, I know you didn’t MEAN to push me off the bed. Here I am again in your face.”
(Gabby is now 15 – this picture is when she was a bitty kitten)
I have spent many years observing the pet world and would like to share some of the wisdom that I’ve picked up. (Please note all quotations are from the pets)
Live for the moment
“What’s up? Wanna lay down for a while? Okay,” followed by nestling into the blankets as if for a lifetime.
“What? You moved? Let me jump up just in case you wanted to go somewhere – the next room counts as going somewhere.”
Allow yourself to grieve because there is a new you. It may be pretty darn close to the old one, or possibly quite different. But then you have to get up.
There are many people who have brain surgery to remove an Acoustic Neuroma and return to life as they knew it. Not everyone is significantly altered. However, many of us are changed forever. It’s ok to be sad about the loss of our previous selves and lives. I found that it was helpful to recognize those differences, to grieve the change prior to accepting the new me. Then it was time to get to know the new me and move forward once again with life.
Be optimistic, but don’t discount possible outcomes just because they don’t sound fun.
I did extensive research prior to my brain surgery. What I learned was helpful, fascinating, and terrifying. It was very helpful to have information tucked away in my mind to retrieve as I experienced things when waking up. However, I did discount all scary outcomes just because I didn’t want to experience them, didn’t have time, and couldn’t conceive of those things happening to me.
Topics that were helpful were facial “weakness”, which I learned was actually paralysis; dry eye and gold weight implants in eyelids; single sided deafness; spinal fluid leak; taste changes after surgery that angers facial nerves.