The climb is worth the view. . .
For acoustic neuroma survivors, we frequently have to pay a price for participating in activities or being more active than usual. What can be a fun, exciting event for our friends and family frequently takes a toll on AN survivors. Our balance systems are compromised, and for many, our heads still hurt. Additionally, drugs are layered onto our systems to relieve head pain, causing fatigue or less mental clarity. Although acoustic neuroma brain tumors are benign, and we lived, craniotomies do cause the head to be compromised.
We participate though because we do want to! We want to spend time with friends and family. There are trips that we want to go on. We want to live life because we have learned to appreciate the value of it!
I thought might be helpful to explain the effect of a loud gathering on our battered brains – not as a complaint but to put you in our shoes for a moment (or maybe I should say in our heads). Especially as we are going into a Holiday weekend in the US. (Memorial Day)
Our senses are assaulted by noise that is considered normal to the rest of the world (and to us prior to surgery). Frankly, this can be exhausting. We have to plan appropriately to make sure we are adequately rested up prior to an event. After the event, we sometimes need up to a day of rest to get our heads to settle back down.
Our hearing, if single-sided deaf, challenges our brains to work overtime to sort out where noise is coming from or to focus on someone in front of us when our brains randomly pick a voice from across the room to hear instead. If you are on our deaf side and say something, we might unintentionally ignore you. Or do what I call “look like we’re going in for a kiss.” Let me explain. Because we have to turn our head so far around to get the correct ear positioned to hear you, it puts our face directly, and oddly, into yours. No sideways chatter for us – unless you’re on the correct side.
Our tinnitus gets louder in social settings. Typically it roars after the event for up to a day after we return to a quiet location.
Our dry eyes tend to get worse through the day. So by the time evening comes, you will probably see us putting eye drops in frequently, which still might not be adequate for our comfort. We may close our eyes during a concert – yes, to appreciate the music – but also to give our eye a rest.
Talking, even for a typical chatterbox, can become awkward in a noisy setting. We want to talk to you but our brain might be on overload and have difficulty concentrating on the topic at hand.
And then there’s balance. If you put us in a room where we have to stand around balancing a plate of food, a glass with beverage we may suddenly find ourselves weaving. Unsteady despite the fact that we typically drink little to no alcohol due to drugs we may be on, our compromised systems, or the sad fact that alcohol intensifies headaches.
So, if you want to have a great time with someone who has had an Acoustic Neuroma brain tumor, look for us over in the quietest corner, sitting down, and talking to one individual whose lips we may be partially reading.
Of course, the final challenge is group pictures for those of us who have facial paralysis – either full or partial. Please don’t ask us to smile bigger. Accept if we want to be turned a certain way that accentuates the side that actually smiles. A brief explanation to the photographer helps, but sometimes we just want to blend in and NOT talk about it.
Further, if you want to talk to us the next day about what a great party it was? You can find us at home in bed. Oh, and please, don’t be offended if we went home early. Moments with loved ones are cherished.
oh how I love this.. this is so true.. I take daily walks to a state preserve park,, luckily walking distance but it does require all of the above.. thank you for sharing this
Very well written. You touch the depths of what we ANA survivors hide to be normal. I thank you:)
Great article. I have experienced everything you have mentioned. I am 2 years recovered from my surgery and I am getting better all the time. The single sided hearing is the worst for me (I like to play guitar in my spare time). Thanks for sharing 🙂
This is so true. Thank you for validating “what it is like”.
I really had no idea. You AMAZE me. I appreciate your every effort to meet on the 2nd Wednesday of the month, even more now. This was so well written and very important to know.
Thank you! I have gotten more feedback from other ANers on this post than any other. It really hit home with a lot of people, some of whom have shared with loved ones to let them know what they are experiencing.
Thanks for explaining this so very well. You helped me better understand my dear loved one!
So well said, and every word resonates with me, even six years post surgery.
It has been 10 years since my brain surgery. 🙂 I am so grateful that I went through with it, but it is still very devastating, not just the hearing loss but all of the other daily reminders on how difficult it can be on a day to day basis. People really don’t understand the difficulty in many different things we take for granted when we did have hearing in both ears. It is a challenge, but one that I can and will get through each day! Hang in there and keep fighting.
We all have to keep fighting!!