Story 3. What I've Learned.... (for the Acoustic Neuroma Association

The final story requested by the Acoustic Neuroma Association for Brain Tumor awareness month in May. The assignment was to write about what you have learned from having an acoustic neuroma.

Story 3. What I’ve learned…

I learned to appreciate my marriage. When you come face-to-face with “the worse” part of your “for better or worse” vows there’s not always a happy ending. My husband, Richard, was always there for me. When you’re married, and serious illness strikes one or the other, it’s both of you who have the problem: You live it together. Life would be much harder without Richard’s arm to balance me both literally and metaphorically. I appreciate having a considerate, supportive spouse so much more than I did before the AN.

I learned that while I could no longer do certain things, there was plenty I could do. When we heard of a great walking vacation in Japan on the Nakasendo Way, we decided we’d like to attempt it. Did I think I’d ever be enjoying a vacation like this? No. I  was never particularly athletic and with the acoustic neuroma I thought any strenuous hiking would be beyond my energy and balance limits. However, with plenty of encouragement from my fellow hikers and my husband, I trained, walking daily and extending the distances each week. In the end, I managed most of the walk, only skipping the final demanding day. The experience and the sense of accomplishment were thrilling.

I learned countless lessons from the ANA support group. I never thought of myself as the support group “type” and I was doing pretty well adapting to my new normal. Or so I thought. What did I hope to get from a support group meeting? Although I was in denial, I knew my social skills were deteriorating, and I was slowly turning inward. I had to step out of my comfortable cocoon.

On the particular Saturday, when I planned to attend my first support group meeting, a huge rain storm blew in. “Aha, I thought. I’m not driving down to San Diego in the rain.” The windshield wiper action made me dizzy, so I had a perfect excuse for not attending meeting. On the other hand, I’d “excused” myself too often from the meetings, and I knew it. I mustered up the courage to get in the car and drive down to the meeting. More than thirty people were there. When I met others far worse off than me, living their lives to the fullest, I was motivated to take a hard look at my behavior. I learned I was lucky.

Later, after attending a few more meetings, I realized that Wanda Crook was doing all the support group work alone.  After she asked for help at one meeting, I volunteered. At least, I thought, I can hand out name tags, help with signs and clean up afterward. With time and good coaching by Wanda, I began doing more - helping her to recruit speakers, set up appropriate venues and field calls from the newly diagnosed. I felt useful, and it gave me great satisfaction to be able to help others.

I learned to budget energy, just as I budget money. Exhaustion is the acoustic neuroma sufferer’s worst enemy. Exhaustion invites depression, defeat, and despair. For 7-8 hours a day, I function well. Beyond that, my energy starts to run out like air out of a balloon. After a year or so of constantly over-doing everything, I learned to pace myself. Now I size up my week and decide what I’m willing to spend my energy budget on and which things can wait or get crossed off my to-do list permanently. As a result, I believe I’m living a more focused and fulfilled life.

I became a better planner. Because I don’t drive in the dark and only park in certain known places, I’m very careful about planning trips. If I’m driving someplace new, I prepare by studying my route on MapQuest or Google Maps, and I use a GPS. I leave well in advance of any appointments to give me time to find appropriate parking (not too tight, away from pedestrian areas). As a consequence, I’m more punctual than I used to be. Despite the dizziness, I think I’m a better driver because I never take a passenger, turn on the radio or use the phone. When we travel on longer trips, we leave little to chance. We know exactly where we’re going, and we plan our days and sightseeing to accommodate my energy budget. I pay more attention to details and logistics than I did in the past. Because of the good planning we get more out of our travel time than we used to.

I’ve learned to be more considerate and tolerant of others -  one of the most important learning experience of this journey. Overall people have been very kind and put out an extra effort so that I can hear them. Doors are opened for me when I do my stagger-walk towards them. At restaurants, we are almost always given a booth when we ask for it, so we can sit side by side for better hearing. I’m thankful for people’s kindness and try to “pay it forward” as often as I can.

Finally, I’ve learned gratitude, the greatest lesson of all.  Before the acoustic neuroma, I was too busy with all the details of life to relish being alive. Like most, I simply took my life for granted. Now, every morning when I wake up and start my day, I’m aware that the day is a gift. I try to live in the moment and enjoy all the wonders of being alive and functional.