Acoustic Neuromas – Alive. . . AND. . .living

Sally Stap

Having an acoustic neuroma brain tumor gives us a new view of life, relationships, and priorities.  While we each have lived a unique although shared journey with our outcomes, the word “LIVED” needs emphasis.  Even as we seek understanding and self-acceptance, we are alive and want to squeeze every drop of pleasure possible from each day.

Despite all or any issues that we deal with daily, there are times when we just do what we want to do.  We spend a day shopping too long until we are drop-dead tired with a head that says stop.  We go to a concert despite the tinnitus that will be louder afterward. We swing at the playground with our grandchildren, or children, even though we’ll feel woozy when we get off.  It’s the price we are willing to pay for fun with our families and loved ones.

This past weekend was just that for me.  My family has been going up to Mackinac Island, at the top of Michigan’s mitten, for more years than I can remember.  Not every year, but at least every few years so we can enjoy the island’s traditions – ferry’s that go back and forth to the mainland, horses and bicycles only, fudge in every other store, and unpredictability in weather. Sometimes it’s hot, hot, hot.  Other times it’s impossible to cut the wind with seemingly endless layers.  This time it was pleasant but foggy.  My best laid plans to take a ferry ride under the Mackinac Bridge were thwarted by thick fog.

I know that wind and too much activity is a problem for my head.  However, this weekend I lived life.  I rode on top of a ferry to the island with my sweatshirt pulled tight over my ears.  I closed my eyes and absorbed as much of the wind and air and life that I could.  I overindulged in Fudge (basically a requirement on the island).  I saw my grandson touch a horsey for the first time.  I saw the awe in his eyes at the strange sights of horses and bicycles crossing paths.  I saw my daughter manage to not scream when a butterfly landed on her head.  The love for her child gave her a brave, but guarded smile as she showed how lovely the experience was.

I made sure that our family all wore matching t-shirts, which I know is absolutely dorky.  But we lived and loved another weekend away on our “Stap-inaw Mackinaw 2014” adventure.  Of course, that included asking a stranger to take a picture of twelve people in matching t-shirts waiting to head in different directions for the day’s activities.

Today I’m at home again, and accept without guilt that I slept all morning after rising to take some medication.  Disabled isn’t dead.  Disabled is adapting to life by giving in to our less than perfect body while pushing it to live life.

Yes, acoustic neuromas bring many challenges, but they also bring appreciation for normalcy.  They emphasize that life is as delicate as a butterfly’s wings.  They remind us that, even with one ear, we can hear the clip clop of horses hooves.  We are alive. . . AND living.

8 thoughts on “Acoustic Neuromas – Alive. . . AND. . .living

  1. Gail

    Thank you for sharing. We are finding the same. Anyway I can spend time with my daughter who has this too. I worry constantly about her.

    Reply
  2. Mary Cole

    Great to know that others people are experiencing similar things. I am in a new job and appreciate the opportunity to work despite my disability…completely deaf on my right side.

    Reply
  3. Melissa Baumbick

    Hi Sally – I’ve just read your most recent blog post and loved what you said about being disabled. That it does not mean you are dead, just occasionally giving in to our less than perfect bodies, while pushing them to live life. I think that would really resonate with other AN patients and I would love to share it on the Acoustic Neuroma Association’s facebook page. I’d like to share that quote with a link back to your blog to read the entire post. Please let me know if I have your permission to do that. Thank you! And great post!!

    Reply
  4. Acoustic Neuroma Association

    Hi Sally –I am the Communications Specialist for the Acoustic Neuroma Association. I’ve just read your most recent blog post and loved what you said about being disabled. That it does not mean you are dead, just occasionally giving in to our less than perfect bodies, while pushing them to live life. I think that would really resonate with other AN patients and I would love to share it on the ANA facebook page. I’d like to share that quote with a link back to your blog to read the entire post. Please let me know if I have your permission to do that. Thank you! And great post!!

    Reply
  5. Kathleen Potters

    We are here and survived it all because of our great strength and courage and love that was supported by our family and friends 🙂 I had Acoustic Neuroma found and taken out two months after giving birth to my beautiful 2nd daughter 🙂 the tumor may be gone but our struggles goes on… Thank you for sharing 🙂 she is 6months now and I continue with speech therapy follow up on eye and face appts… I am only turning 27 this September… xoxo

    ~AN patient

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