People will get sick of hearing you talk about your limitations. You will get sick of yourself if you don’t adapt and focus on what you can do instead of what you can no longer do.
Depending on your age, you may remember the phrase “talk to the hand.” it was popular in the 1990’s and was in many television shows and movies. It implied that one wasn’t listening so you might as well talk to the hand that is in your face to hold you at a distance.
Talking about Acoustic Neuroma experiences is a tricky topic. While it is important to focus on positive and not negative, there is value in talking about your experience:
Camaraderie is important. Finding others who experience this is helpful. Friend and family support is critical to our well being.
Shared understanding. Caregivers and family need and want to understand how life has changed for us following brain surgery. Letting them know how they can help you may be difficult but it pays off in the end.
Authenticity. We need to talk through the changes and gaps between who we were and who we are now. We have to come to terms with the “new me.”
We are our own advocates. While the burden of this entire experience is heavy and there is nothing we would like better than to relinquish dealing with doctors, hospitals, jobs, disability as well as the world in general – we need to find the strength to continue on and stand up when we need something. Don’t accept being brushed off if there is an issue.
Serving others. People who are newly diagnosed with acoustic neuromas need the support of those who have gone through the process of treatment selection, possibly treatment, and likely changes. Being available to others reassures them that they are not alone in outcome issues.
When is it too much? When is it time to change the subject?
When you feel yourself cycling and repeating yourself. There is a point where we need to accept where and who we are.
When you are feeling sorry for yourself. While some self pity is actually a good thing. We can all feel sorry for ourselves for limited periods of time and that’s healthy. However, we cannot let a brain tumor define us.
When we begin to focus too much on what we cannot control. Life changes in many ways that introduce us to paths that were unexpected. “It is what it is.”
We are dwelling too much on what we lost. Life is a moving journey. We would not want to stand in one place forever. Just like we change some people in our lives over time, lose or change jobs, and live in different homes – going back is not an option. Just like a favorite pair of jeans that rip out and we finally reluctantly discard them – we are now finding ourselves in a new place in life. Moving forward is our only option.
We give up after a failure. One thing that we as acoustic neuroma recipients have learned is that we will have days that are great followed by days when we can not move, or times when we lose balance, or even yet another time when we have to explain to someone that we didn’t hear them because we are deaf on “that side.” Over time, we learn new adapting methods that ease those future “failures.” We need to find a balance between accepting and pushing. Only we know our bodies and can make that call.
Acoustic Neuromas are each unique. Like snowflakes, we each have our own experiences and outcomes..