I was diagnosed with a brain tumor in 1996. I searched for experts to help me recover from the loss of balance, facial function, eye function, hearing, reduced stamina and overall lesser motivation for life. These deficits resulted from my two acoustic neuroma (AN) surgeries.
My journey of recovery from a 4.5cm acoustic neuroma began with a left translabyrinthine surgery in 1996. Surgery left me off-balance. I had to re-learn to walk and learned to function with only one balance nerve. Although I eventually regained the ability to ambulate effectively, I remained imbalanced and dizzy much of the time. I took medication most days for what appeared to be ongoing motion-sickness-like nausea. I gave up many activities from my pre-surgical life; roller-skating with my wife, swimming, rock climbing and bicycling. As I finally began to recover, the tumor reappeared.
I had my second surgery in 1999. My post-operative course was worse the second time. I had facial paralysis, dry eye and other post-surgical challenges. My physicians remained patient with me and listened attentively to my complaints. They encouraged me to remain active and positive and engage in activities that challenged my balance, to help me regain my balance skills.
Feeling so poorly most of the time, the last thing I was interested in was making myself feel worse. I became inactive and waited for the "pre-surgical me" to return.
A comment made by a fellow AN patient became a motivational milestone for me. I was at my first Acoustic Neuroma Association (ANA) Symposium in Dallas, 1996. As I sat eating and complaining, another patient listened to my story, then she said "Just remember -- you are now living life in a slightly smaller box. Your life is still full of the same wonderful things that were there before surgery. Your symptoms merely limit it, to a small degree." For years I've thought about that comment and it's helped me cope with day-to-day challenges such as chronic pain, and other annoying symptoms too.
At the most recent ANA Symposium in Los Angeles, I presented my thoughts regarding how that comment has stayed with me and motivated me through my recovery. To this day I have a crystal box, purchased in Dallas the year of that first Symposium, which reminds me that life can be beautiful -- even if it comes with unexpected limitations. I have come to appreciate that our "box," the life that we've been granted, can impact the world, even with limitations in stamina, concentration, hearing, balance and vision.
With a desire to make the best of a tough situation, I've tried to improve my health; to eat better, to lose some of the 20 pounds gained during my seven years of recovery, to gain mental peace and to become more active. I've tried weight-lifting, walking and yard work. I began eating differently, tried to change my mental attitude, and I even took medication for sleeping and depression. Each time I failed, I believed I was not going to improve my health, and soon my smaller box of physical limitations became my new "lot-in-life."
On March 31, 2003 a close friend, Shawn, came to visit my son, Robby. The two of them were to spend the afternoon bike riding. Much to my surprise, my son, who easily becomes impatient with his invalid father, invited me to go with them.
This simple request was exceptionally important because Robby and I didn't spend very much time together doing things, due to my limitations. After the illness and subsequent surgeries took a toll on my body, the resulting physical limitations took an even greater toll on my relationship with my teenage son.
When he asked me to spend some time with him - I couldn't have been more excited and I couldn't have been more fearful.
A bike ride? I wanted to spend time with him at his request, but I didn't know if I could even keep a bike upright.
In the back of my mind I recalled the encouragement of my surgeon who urged me to challenge my poor balance with activities that required balance to help me improve and feel less tipsy and less dizzy. The request from my son was a strong a motivator and the fear, almost its equal, was not strong enough that day to keep me from giving it a try. I got out my bike, suited up, put on a helmet and took a few laps down the driveway to be sure I wouldn't end up on my face.
Much to my surprise, I was able to balance well enough to give it a try. I was quite wobbly, but after the first couple of blocks, I was riding along comfortably. My son and friend were speeding up ahead of me, up a small incline, just down the street from our home. Trying valiantly to keep up, and only ½ mile into the ride, I realized I was way out of shape. I had to turn home, unable to get my lungs to suck more air, and my legs were screaming. Thankfully, the way home was downhill! I coasted back to the house for a needed rest on the couch.
Lying on the couch, I began to consider the possibility of an occasional bike ride to get my wobbly, flabby, out of shape body going again. I was tired of huffing-and-puffing at the top of the stairs and buying new pants to fit my growing mid-section.
The next day I rode that same ½ mile. I repeated that ride every morning and decided I would try to keep with it. I rode outside on the street or indoors on an exercise bike, 10-15 minutes every day. Over the weeks that followed my 10 minute rides grew longer and my lungs and legs became stronger. I can still remember the day about two years ago (June, 2003) when I completed a four-mile ride in 38 minutes.
It was at about that time (summer, 2003) that Dr. Douglas Beck, from www.healthyhearing.com, phoned to interview me regarding my experiences related to hearing, hearing loss and my success with the direct bone conduction, Baha® System implant (see below).
I decided to keep a daily log of my time and miles. I became increasingly compelled to ride everyday. I didn't want a day to pass without marking my progress chart. Progress begat progress.
Each morning as the sun rose, I was on the bike, riding the streets of North County San Diego. Riding gave me time to think, while taking in the beautiful scenery and the fresh morning air. The more I rode the more confidence I gained.
Maybe, just maybe, I could ride enough to get back in shape, conquer my sleep problems and lose weight while strengthening my heart and lungs. I thought this might be the right opportunity.
One beautiful morning in July, 2004, I awoke as usual at 5am to get ready for the morning ride. As I turned on the TV to watch the news while strapping on my shoes, a report on the Tour de 'France was being televised. I learned about Lance Armstrong's progress. They talked about his recovery from his illness. Lance is a fellow brain tumor survivor (his brain tumors were secondary to testicular cancer). In addition to the spectacular story of his recovery, he was attempting to win his fifth consecutive Tour de 'France international bike race with the US Postal Cycling Team. The "Tour" is a month long race that takes riders all around France and over some of the tallest mountains in Europe. I didn't go riding that day - I watched the day's racing report until it ended.
Late for work, I pulled off the workout gear and prepared to leave for work. When I came home that evening and got on the bike, I was convinced road riding could be really fun if I could just get in good enough shape to really ride and enjoy it.
In San Diego, bike riding is very common. Large groups of riders are a very common sight on the roads. I knew I couldn't keep up with them, but it was fun to see them race by in their brightly colored outfits and expensive, fancy bikes, while I rode along in my t-shirt and 30-year old bike, trying to finish another mile without falling on my face!
Watching the 100th Tour de 'France and observing Lance Armstrong's attempt to win his 5th "Tour," and my own fledgling attempt at getting in shape -- all came together and motivated me to a new level. I was motivated to get healthy. Maybe if I could stick with it getting in shape would help my balance, confidence, depression, sleep problems, stamina problems and weight issues. I decided to keep riding, and go further and faster everyday.
I have now ridden over 2,400 miles. Recently, I completed the same four-mile course that took me 32 minutes one year ago -- in 12 minutes. I can now ride five hours without stopping. On good days, I usually ride for an hour and complete18-22 miles. In addition to riding, I love to work on my bike. I even follow the exploits and successes of professional riders.
The last 16 months have been hard; some days very, very hard. It's challenging to ride daily. Time is scarce and precious. I have embarrassed myself and I've even fallen (more than once) because of my balance problems. But I keep biking, and the benefits have been spectacular.
Almost every single day, while riding, some car driver scares me to death -- speeding past me. They come up from behind me, on my left, and because I cannot hear them until they are just about even with me, sometimes they totally surprise me. I've had motion sickness, back and knee pain, and I have to wear an embarrassing, funny-looking goggle to protect my dry left eye, but I keep riding.
One of the things I miss the most is being outside in a peaceful, quiet nature setting. Since my first surgery, I've had severe tinnitus which has gotten worse over time. One of the benefits of riding is that at 14 miles per hour, as the wind rushes past my helmet, it almost masks my tinnitus. The tinnitus is distracting and very annoying. Nothing really helps the tinnitus, but I can ride through pristine scenery, over the back roads and along the coast highway of San Diego and enjoy the peaceful outdoors again. It's not like it used to be, but I have found a new peace in the midst of tinnitus.
My pulse rate has returned to an athletic level of 58 beats per minute. When I started riding, I weighed 182 pounds. I now weigh the same as I did when I set competitive swim records in college; 158 pounds. Sometimes, I pass a few of the hot-shot riders in their fancy jerseys and expensive bikes. I hope to enter some amateur races in the next year, and I hope to continue this sport for many years to come.
Since I started biking, my depression has improved, I sleep better, my balance is nearly as good as it was before surgery, my stamina is better and my confidence has returned.
My box has grown a little bigger. I still have limits, but the limitations are fewer and the opportunities are greater. I hope each AN patient finds an activity to help overcome limitations caused by the illness and treatment.
For those of you who have been through this, or are currently going through it, somewhere in your life there is an open road, a path of opportunity, which can lead you to a life with fewer limitations. My road back has literally been the road and cycling. I am thankful for my surgeons, and for the professional cyclists, Armstrong, Hamilton, Petacchi, whose example motivated me to pursue a new passion, one that has improved my life for the better.
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Please view the previous interview with Doug Metz on Healthy Hearing.
For more information about the BAHA system, click here.
The Road Back
May 9, 2005
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This article is sponsored by Entific.
