What We Really Want for Christmas
Last updated: December 2015
Today I made my Christmas list for Santa.
- I want a 10” tablet, a light one I can carry around easily, one that won’t hurt my hands. I want to take it when I travel so I can write, email, and tweet while shoehorned into a seat on an airliner.
- I want a heated mattress pad.
- And I’d love an all-expenses paid, three-month-long vacation in Finland, the land of my maternal ancestors.
Don’t those sound great? Yep, but here’s the reality: I already have a four-year-old Kindle Fire. It works great on airliners and (mostly) doesn’t hurt my hands to carry around. A bigger tablet would be nice, but it’s not necessary. I have plenty of extra blankets to keep me warm in bed; I don’t need a heated mattress pad. And while I’ve dreamed of a trip to Finland for decades, again it’s not something I really need. Frankly, the huge expense to someone other than myself would embarrass me so much I probably wouldn’t even enjoy myself.
So. I’ve decided to list the things I really want for Christmas--and in the process, what I think most of us who have rheumatoid disease might want, too.
- A cure. But not just any cure: we want one that’s safe and available to every one of us, regardless of income or medical insurance status.
- Patience. It’s by far one of the most difficult things to cultivate and maintain with this disease. Why? For one thing, the drugs we take to treat it are--let me just say it--unreliable. As miraculous as they often are, how well they work (or if they work at all) depends on each of us and our particular, individual case of RD. For instance, one drug might work very well at suppressing my disease and limiting its symptoms, but it doesn’t do the same for yours. Another thing: we don’t know how long they might take to work. You might feel much better after a week; for me, the same result could take five or six months. Or, our working drugs might suddenly stop working--our bodies have figured out how to get around them and, in confused triumph, resume their vicious attack on our joints and other soft tissues. Another good reason we need patience is that RD is so unpredictable in itself. One day--one hour--we’re feeling great. The next, we’re floored by pain, fatigue, or other symptoms. Maybe all of them at once. Plans, work, family outings, and get-togethers with friends: we might have to cancel any or all of them at a moment’s notice. So for Christmas, yes: we want a big ol’ gift of patience, patience, and more patience. It’s key to coping well with this disease, and we can all use as much of it as we can get.
- Better, safer pain medications. Let’s be honest and forthright, here: the drugs that work the best to calm pain and allow us to (mostly) get on with our lives are opioids. They literally allow many of us who cope with RD to live active, productive lives, but they come with lots of heavy baggage. They can have unpleasant side effects, such as constipation. Our brains adjust to their analgesic effects, requiring higher and higher dosages over time to achieve the same pain relief. Their tendency to cause dependence and, in some cases, addiction, is well known. So is the fact that some people abuse them for the euphoria they can cause, or divert them for the money they can make on the black market. And worst of all, there’s the serious danger of death by overdose. Still, the vast majority of legitimate chronic pain patients use opioids responsibly, depending on them only to live their lives with less pain and more normalcy. Nevertheless, the U.S. government is working hard to make these drugs more and more difficult to get in what I believe is an over-simplified and misguided effort to reduce overdose deaths. So, what we who have RD really need for Christmas are new analgesics that we can take to treat pain that actually work efficiently, don’t cause a “high,” and that we can’t die from, even if we accidentally take too much. Another plus: availability to all who need them, regardless of income. Are you listening, pharmaceutical companies? Chronic pain is this country’s worst—and most ignored—medical problem, affecting far more people than diseases like cancer, heart disease, or diabetes combined. Why must we still rely on these dangerous and problematic drugs to treat the very real pain rheumatoid disease causes?
- Grace. Yes, that: a disposition to or an act or instance of kindness, courtesy, or clemency (Merriam-Webster online dictionary). With its pain, fatigue, and malaise; its ability to interfere with our plans and mess with our daily lives; the way it can dampen our mood and overall mental health, well, having RD can just make a person a little bit cranky. It can really sap our patience (see Christmas Wish #1), too. So, receiving a heaping helping of grace for Christmas would go a long way toward not only making our own lives easier, but also the lives of all those we touch each day. I’m thinking of our spouses or significant others, our children, our parents, our friends, and our co-workers. I’m thinking of our caregivers (which may also be any of those named already). I’m thinking of the slow-as-molasses clerk at the drugstore, and of the woman who gave you the stink-eye when you parked in the handicapped space near its front doors and didn't need a pair of crutches to walk. We need to cultivate grace: kindness to others, courtesy, empathy, and forgiveness. Grace is calming. It’s soothing. It makes us feel good about ourselves and, when extended to others, makes them feel good too. Grace is a real gift.
- Mindfulness. Yes I know, I talk about this more than anything else when it comes to coping with rheumatoid disease. Yet for Christmas I wish that every one of us could learn and cultivate it, because mindfulness is nothing more than living in This Moment Right Now. Not in the past: we can do nothing about the things we’ve already done, be they good or bad. They’re gone, behind us and receding rapidly. And not the future: it’s a deception, because the future is only a concept. There’s not much point in trying to live there. No, we can really only live Right Now. So why not make “now” the best it can be? This very minute--no, this very second, slow down and look around you. Be aware of your life and, with wonder and humility, discover how you fit into the world. Find joy in the small moments: the pleasure of breathing, or the taste of buttered toast, or the cozy warmth of your blankets. Even when we hurt, when we’re sick, when we’re facing hardship and travails; even with all of these things happening to us we have the freedom to stop, savor the moment, and discover the beauty, goodness, and joy that’s all around us, anytime we choose. All we have to do is be mindful andlook.
I wish everyone a truly lovely holiday and an absolutely joyous New Year.
When I feel fatigued, I rest as much as I can:
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