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In recognition of having my audio book released, I thought I’d start a challenge. When I get to 500 likes on my Facebook Author page, https://www.facebook.com/Sallystapauthor I will have a drawing to give away five audio books through audible.com. If you want to be included, please LIKE my Facebook page, or comment on a post about the challenge. Please help build my likes to the next milestone by sharing the page with your friends on your timeline, or retweeting.
The sooner I get to 500, the sooner I’ll be sending out audiobooks to the winners!!
Thank you to everyone who has been supportive of my blog. You keep me writing!
Dalmatian Puppy
For anyone interested in my Non-brain tumor writing, I am now posting to http//www.sallystap.com also. Please visit and subscribe there as well as here.
I’ve always found it difficult to navigate the tricky line between giving up and pushing on. I do know and will even acknowledge there is a time for both. I learned today what a polar vortex and acoustic neuroma brain tumor have in common.
Today I had to be in Grand Rapids, about an hour north, for a doctor’s appointment. The news said to stay off the roads. Google Maps said traffic was fine. My look out the window said “so-so.” My head complained. I had to make a decision once the appropriate departure time came – after calculating travel time with extra bad weather minutes added in. Always one to push things to the limit, I headed out.
It was blowing with spots of snow as I headed out on the north-south highway. I could see the wind gusts whirling across the road because each picked up stray snow from banks along the side of the road. I drove carefully — my hands at ten o’clock and two o’clock and the speedometer below the speed limit. I always ensured a good bit of distance between me and other cars because I know that, as in life, it isn’t always our direct action that brings accidents, drama, and unwanted events.
Suddenly, though not surprisingly, traffic stopped ahead of me. We all crept along, blinking tail-lights for those behind us as a warning to slow down. When we reached an exit, some very yellow firemen had the road blocked off with their very green emergency vehicle with red flashing lights. We were all forced to exit the highway. It was shut down.
I didn’t have a option to continue on the same path. I also didn’t have an option to just stop and give up. I DID have a choice to to go north or south once I was off the highway. Should I head home or keep moving, via an alternate route, to my appointment? I had input. I called Kayla (hands free) and asked her to check the map. Her input? “Mom, just go home.” I called the doctor’s office to tell them that I didn’t think I could make it. His input was that he didn’t see anything on the internet map, but I could change my appointment. It was up to me. I could ask God for His direction, but it was me who had to turn right or left. I had to turn when I reached a T in the road (or annoy a lot of cars behind me).
For once in my life, I gave up. I reluctantly, but very carefully headed south. However, I was now on a country road and found myself in a complete white-out. I turned on my emergency flashers and carefully watched ahead as well as behind for other vehicles. Even though I had acknowledged that my day had changed, the battle wasn’t over.
Eventually, I found myself out of the snow and safely home. I still wasn’t happy about relinquishing control to mother nature, but it was clear that I made the right decision when I heard that the swirling storm had closed multiple roads. I accepted getting safely home to rest up and reschedule for another day. I am hearing whistling, violent wind and watching trees wiggle and bend even as I type this.
Acoustic Neuroma brain tumors are like that. We don’t ask for the storm that they bring. We try to keep going. Each person encounter’s their own version of the storm. Someone was in a vehicle ahead of me in the accident that closed the highway. They were “worse off than me.” Someone took the detour and kept going. They eventually reached their destination – or encountered more delays. It may have only been a bump in the road for them. Those folks were “better off than me.” However, everyone on the road today was effected by the storm. Everyone in the Acoustic Neuroma world, including family members of AN recipients, is effected by the storm.
I’d never heard of a polar vortex until this winter. I had never heard of an Acoustic Neuroma before learning that one was camped out in my head. It didn’t mean they didn’t exist. It only means that they hadn’t been drawn to my attention on my journey.
When do we give up on finding treatment for head pain, or dry eye, or facial paralysis issues? How do we adjust to and find ourselves apologizing for our single-sided deafness in noisy settings? When do we turn around and go home for a while? When do we head out again on our life’s journey? I don’t have a precise answer – only that we have to keep moving forward at whatever pace is right for us individually.
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
I went to a local bakery recently and greeted the woman behind the counter. She’s worked there for years, smiling casually as I’ve bought cakes for my daughter’s birthdays, rolls for family bar-b-ques, and bread for Thanksgiving. She’s always behind the counter or arranging delicious baked goods on nearby shelves – her blond and now graying hair pulled back into a hairnet. A stark white apron is always tied around her waist and looped around her neck, splattered with that day’s rainbow colored icing pattern,
While greeting her on this recent day, I wondered at just how little we know about people we see almost daily for years. While I’ve perceived that she’s spent her life in the bakery icing cakes, I know that isn’t true. I don’t know her name and she doesn’t know mine. Since her first pleasant “hello”, I‘ve gone through many life experiences personally and professionally.
Two daughters came into the world and grew into lovely adults. We visited the bakery regularly, starting with a weekly family doughnut day when they were in preschool. I now treasure occasional visits for a leisurely moment over coffee and a sweet roll when I’m lucky enough to get them for a snippet of time.
My career transitioned step to step up the corporate ladder followed by a tumble into retirement via brain tumor. The life and mind altering medical crisis of brain surgery and recovery has taken me through unimaginable changes. I now see the world and people differently.
I’ve visited that same bakery despite moves to several houses and cities. I’ve greeted pets into my life and cried as they slipped away. People have been welcomed into my live as wonderful new friends. I’ve seen, and cried, over friends who have transitioned out of my life as contact slowed from daily to weekly and then seldom or none as the cycle of life and friendship shifted under our feet.
Of course the lady in the bakery doesn’t know any of that. I know nothing about her. I wonder what she’s experienced in her life – even while icing cakes. Perhaps between cakes she takes exotic vacations or writes romance novels. She may have just nursed her mother through cancer. She may have lost a child to a tragedy. She may have an charmed life and family. Maybe she lives alone and only interacts with people at work.
Do you ever wonder what lies just under the covers of a smile? Let’s be kind to one another. Let’s care. . .
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
