The Unpredictability of the Acoustic Neuroma World

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Sunrise or sunset?  Does it matter?

So. . . I took a bit of a break from blogging. That was the point. Sometimes we need to step away from experiences in order to grow from them. Being a part of the AN World is a challenge and a blessing. I don’t say challenge in a whiny voice, but a determined one. We need each other for information sharing, encouragement, and understanding.

The AN world is (Me is a general term here, not me specifically)

  • Unpredictable – each outcome is unique.
  • Unrelenting – it doesn’t go away by itself, and treatment can leave one with “issues”; watch and wait involved many hours of not knowing the future.
  • Puzzling – Why me? Why didn’t my treatment go smoothly?  Why did others go smoothly?  Am I a wimp or was I missing something about it being the best kind of brain tumor.
  • Supportive –With today’s technology we are able to connect globally, which is amazing. It can also be frustrating when we read comments from people we don’t understand or don’t understand us. Sometimes we don’t need a solution for something that has no answer, but just an understanding. “Yep, me too. . .in my corner of the world get what you are saying from your corner.”
  • Confusing – I’m alive, but I still feel so conflicted. I’m grateful but exhausted, depressed, and trying to figure out who the “new me” is.
  • Exhausting – Fatigue just is in the AN world — for many. Fatigue that is not merely being tired. The brain is working overtime to compensate for damage that was done to eradicate the alien.
  • Ground hog day – For those with less than ideal outcomes, it can become redundant to deal with issues, some of which may have only so much room for improvement. For watch and wait, it’s waking up every day knowing that there’s an unpredictable alien in our head.

This AN world contains a set population of people with varied outcomes following treatment, blended with new people looking for an encouraging and positive prediction about their newly diagnosed life change. They are scared. We need to encourage and be realistic while not being “Debbie downer.” It’s a dance that sometimes causes friction. Both within each life and relationships and within each support group.

Do I tell a new person that it is no big deal?  As we’ve all been told “It’s the best kind of brain tumor you can get.” “Who needs two functioning ears when one will work?”

Do I scare the heck out of the newly diagnosed when it is a possibility that they will skate through and say “That was no big deal. I have no residual effects!”

When they wake up from surgery, or complete a treatment will they understand what they are experiencing?

We all dance around, “For me, it was xyz, but we can’t predict. . . “

I felt blindsided by my experience. I had received very encouraging predictions about how it would go. I closed my mind to other options. I was told that it would be terrible for a few days, but then all predictions were of a full recovery. I struggled as I scrambled to put my old self back together. It was only when I found peace with the fact that the old me had passed, just as youth does, that I was able to embrace my new life. I was able to see blessings through struggle, and learned perseverance of managing chronic pain. I found new interests, and refused to pull the covers over my head and die. I do allow myself to pull the covers over my head and let my body rest without guilt that a day was not productive. Eventually, I always get up and take that first step.

Would I do it any differently?  Probably not. However, it is important to support people wherever they are and accept their experiences and individual journeys. It is important to recognize the extremely broad and unpredictable range of outcomes.

No rhyme or reason, young or old, male or female, large or small tumor, or treatment type. Each journey is individual. Each smile is unique. What we each hear is unique. But we are all in this together.  Camaraderie and understanding is priceless.

6 thoughts on “The Unpredictability of the Acoustic Neuroma World

  1. Helen McHargue

    This is so absolutely right-on. Everyone should get to read this. May I send this around to our support group? They don’t all have Facebook and might miss it.

    Reply
  2. Sue Bee

    Very well stated Sally! When I had Gamma Knife, I did not even consider failure. When I had it again, I again thought it would be 100% successful. When it wasn’t, and later needed life saving brain surgery, I began to contemplate ” worse case scenarios”. Good thing I did because it helped me to cope with the life changing situations I now face. It is quite a challenge I must say, but with the help of my family and friends and all of my AN and facial paralysis friends, I have made, I am managing well. My “new normal” continues to take me by surprise, but I am meeting the challenge. Perhaps not as well as I should (facial issues), or perhaps more slowly than I should, but I am meeting them! My graditude and admiration for you Sally, is immense. You have single-handedly helped so many people, and I thank you.

    Reply
  3. Rebecca

    Yep, me to…. has become an answer for me too with many of AN issues, thus our support and cameradery has become an important part as I can relate to the issue. Well spoken my friend.

    Reply
    1. sallystap Post author

      thank you. When I start writing I’m never sure if it’s just me that feels something, but have been repeatedly encouraged that I’m not alone! I write to figure things out for myself – and am very happy if it connects with others!

      Reply

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