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.