Making Plans for the Future with RAby Lene Andersen, MSW Patient Advocate
"The future's so bright, I gotta wear shades."
That's a line from a terrific song by a group called Timbuk 3. What's not so terrific is that many people with RA feel that it doesn't apply to them. How can you plan for the future when you live with an unpredictable disease that can at any minute cancel your plans for the weekend, nevermind the rest of your life? How can you plan for the future when your health has been taken away? How can you make plans when it feels as if you have no future?
Having RA can feel as if something other than yourself controls your life. Too many flares, one too many cancellations, one too many times when the rug has been pulled out from under you, and you give up. You roll up in a metaphorical (or literal) ball, protecting your vulnerable underside against the relentless attacks on your body, your ability to cope, on your very soul. When getting through the next five minutes seems impossible, planning for the future goes out the window.
I used to have a habit of summarizing the year that was in a journal on New Year's Eve. I wrote down the major international events, as well as what had happened in my own life. Remembering the hopes I'd had the year before and how very little of it came to pass would inevitably make me depressed. From the emotional high of the joy of Christmas, to spending December 31 in tears, that last week of the year was a roller coaster.
That's the problem with living moment to moment: what happens in your life becomes a result of external forces, rather than what you would like to happen. Instead of being proactive and pursuing your dreams, you merely react.
Five years ago, I stopped reacting. Inspired by a Barbara Walters special (of all things), I decided to create a five-year plan and finally write a book, fulfilling a lifelong dream. It meant assuming that the medication which had been working fairly well for five years would continue to work.
It sounds easy, typing it just like that, but it wasn't. This was the first time in 40 years that a medication had worked for me, bringing me out of a life-threatening flare. Although I had found a way to connect to joy, underneath it all was a constant undercurrent of fear of it all been taken away.
That undercurrent is familiar to most people who live with RA. It's a product of years lived with this unpredictable illness that has a habit of rearing its ugly little head at times when it can do the greatest damage to your life. Ignoring the sibilant susurration of anxiety sowing doubt and discouragement takes a great deal of effort. Beating down the negative to create a habit of being positive requires mental discipline, going back again and again, countering the message of "what if you can't" with "what if I can."
What it takes, more than anything else, is hope and that is terrifying. Hoping that things will work out and RA throwing a spanner in the works is a devastating moment. Building up the nerve to hope again after your previous hopes have been dashed, is harder every time. But it is an essential part of fighting back against the insidious erosion of your self, your core, that RA can so easily achieve. Daring to hope is the greatest enemy RA has. Hope is what makes us say that we have RA, but RA does not have us. Hope lends us the courage to live, to pursue dreams, to get out there even though RA is muttering at us, threatening to take over.
Having goals and dreams and aspirations, following them all and working to make them a reality, is the only way to create the kind of life that you can look back on with satisfaction, whether it's on New Year's Eve or when you're 80 years old.
It is not about achieving the goals and dreams, but about having them and doing something active to pursue them. And when RA gets in your way which it will, inevitably it is about getting through that and out to the other side where you can continue pursuing those dreams and goals. Just like anyone else, you will achieve some of them, others not, and the journey will make it all worthwhile. So tell those whisperings of doubt to hit the road and do the same yourself. Have adventures, big or small, love and live and laugh. Dare to dream and dare to do something to make them real.
What happened to my quest to realize my dream? It didn't go smoothly there were a lot of starts and stops, but I was stubborn. Every time things got derailed, I get back on track as soon as it was possible. The book was published three years after I made my plan and I'm now working on another one.
What dreams do you want to pursue?