My personality is such that I have always, as both child and adult, operated from a place of fear. My first instinct when presented with something new is often “I can’t do it.” That has changed over time, but I’m still a work in progress. Having rheumatoid arthritis adds to the challenge.
When John and I got together, I discovered he was a guitarist. I told him I’d played the guitar decades ago, but stopped when my fingers, now bending at odd angles with a mind of their own, no longer allowed me to form many of the chords. “My guitar playing days are over,” I told him. At that time, he was attending a weekly guitar meet-up group and one day I went with him just to listen and sing along. Inspired, I picked up my old guitar when I got home and discovered that, while I couldn’t play barre chords or even a D chord without a lot of buzzing, there were many chords I could still play. What a surprise! At the next meet-up, I brought my guitar and had a blast. Over the next couple of years, I improved. There are still many chords that will always be out of reach for me, but the joy of playing guitar is back and all because I decided to change “I can’t” to “I’ll give it a try.”
Playing the guitar is one thing; travel is quite another. A few years ago, some friends suggested we all go to Italy together. It would mean two weeks of living in a Tuscan villa from which we’d explore the surrounding towns. My immediate response was “I can’t go.” I worried I might get a blood clot in my damaged left leg on that long flight, or that I wouldn’t be able to do the walking the trip demanded, holding my friends back, etcetera, etcetera. I could come up with a thousand reasons not to go. But John and my friends talked me into it, and I tamped down my fears and got on that plane.
“It turns out that the experiences I nearly missed out of fear and worry were the experiences I most enjoyed and the memories I most treasure.”
I paid a little more for a seat on the plane that gave me extra room for my leg. I used wheelchairs in the airports. I took a travel cane that broke apart into three pieces. Our Tuscan villa was easily accessible and had breathtaking views of the countryside. When we toured the surrounding towns, I walked when I could walk and sat in a café reading or people watching when I needed to rest my foot. I took a cooking class in Sienna with my women friends while our guys had a photography outing. Before leaving home, I’d found an amazing language program online and had spent a little time each evening studying Italian, and I thoroughly enjoyed putting what I’d learned into practice. When the trip ended, I chided myself over the fact that I’d almost missed this fabulous opportunity. It was a lesson for me.
The following January, though, I seemed to forget that lesson when my United Kingdom publisher asked me to come to London to finally meet the staff face-to-face, as well as to spend time with some of my UK readers. Again, I went through the worries of not being able to travel well or to do all my publisher would expect of me, but I felt an obligation to go, and of course—as with the Italy trip—it was worth any discomfort I might have experienced. I once again made use of airport wheelchairs and traveled with my brace and cane, but what I remember from the trip is what a treat it was to sit down with the people who have made my books popular in Great Britain and how amazing it was to finally meet some of my wonderful UK readers.
Then came the invitation to join my stepdaughter and her family in Disneyland, 3,000 miles from where I live. The trip seemed unimaginable. I was worried I’d be a burden to them—we worry about the impact our illness has on others as well as ourselves, don’t we?
I knew I’d need to rent a mobility scooter and I pictured my stepdaughter and her husband lugging the scooter in and out of their rental car for me. My stepdaughter assured me they wanted me with them, though, gimpy foot and all, and I finally agreed to go. We bit the bullet and took rooms in the park itself so we didn’t need a car. My rented scooter made getting around a breeze, and it was a hit with my granddaughters, who took turns riding on my lap (against the rules, I later discovered, to my chagrin!). I had a blast spending time with my family and once again wondered how I ever could have considered staying home.
It turns out that the experiences I nearly missed out of fear and worry were the experiences I most enjoyed and the memories I most treasure. I’ve learned how to stop before I give an automatic “no” when offered a new experience. I have to ask myself this question: Am I resisting because I truly don’t want to go (which is fine) or because I’m worried my “special needs” will get in the way (which is not fine)? I’ve discovered that, for me, there is nearly always a way to deal with special needs. Life is too short for us to miss out on the best it has to offer.