Like most of us who cope with rheumatoid arthritis day after day (because admit it – even when we don’t hurt, we know it’s in the wings, waiting for a cue to stride out front and center like a stage villain), I don’t like to complain all the time. Makes me feel whiney and small, and at my age, feeling like that is something I try hard to avoid. And, as Jules so beautifully points out – and practices – attitude is everything.
That said my hands are much less painful today; they’re back to their usual selves. The stormy ache has quieted to a low overcast and there are no sudden gusts of cutting pain. The fact that they’re so much better can be attributed, I believe, in no small part to the kindness of friends.
Now, I’m not talking about the friends I see or at least speak to frequently. They’re wonderful, of course, and I love them all.
I’m talking about you, the truly kindly people I’ve come to care about here, online. I suppose I could call you my “virtual” friends, but while you’re all very quiet, I’ve never heard your voices and I know what only a few of you look like because you’ve posted photos of yourselves on your blogs, “virtual” is a far from adequate description. It makes it sound as if you’re imaginary, like Christopher Robin’s dear friends Pooh and Tigger, Rabbit and Piglet. You may be as wise, bouncy, crusty, silly and kind as they were (and are, in the minds of children and ex-children everywhere), but you’re most decidedly not imaginary.
Fact is, you’re as real as I am as I sit here in Camino, California in my chilly den at my messy desk as I type these words into my laptop, my little space heater blowing warm on my freezing feet.
So this post is about you, my friends. Or rather, it’s about us. We’re widely separated by physical distance – one of you lives in a city in the Andes, another in England; a few of you live in eastern Canada; and in the U.S., Southern California, Illinois, Florida, Arkansas, and Maryland, to name just a few. To be perfectly honest, I’m not sure where some of you hail from, and while I’m endlessly curious, it hardly matters. What does is that we all share several things in common that allow us to greet each other as friends.
The first is a connection to the World-wide Web. This is like … well, amazing. Isn’t it?
The second is that we’re all fairly comfortable with computers – and we can type. Next is a propensity for the written word, along with the courage to actually write words down ourselves and save them rather than just say them.
Then there’s a certain talent for writing. Without it, few of us would be here as frequently as we are. Maybe not at all. There’s also the will necessary to scrape some time out of each busy day and put it aside just for writing. This is no small thing. Writing doesn’t only take the time needed to keyboard the words into the computer and hit “save” or “publish.” It’s an ongoing process, one that works quietly in the back rooms of our minds throughout the night in resting dreams and during the day while we’re dealing with more immediate issues, like stopping for a red light, participating in a meeting or putting together school lunches for the kids. Writing is time-consuming. Basically, it never stops, but it takes dedication.
Even with all that in common, we’re still separated by genders and age. We’re women and men. Some of us are teens or barely in our 20s; others are in our primes – our 30s and 40s. Still others are still going hard but starting to feel the burn – those of us in our 50s and beyond. Some of us are working at outside jobs, “bringing home the bacon.” Some of us are working at the tough and wonderful job of raising children and taking care of a home. Some of us work what used to be “outside” jobs from inside our homes, our extra rooms converted into offices. And by choice or not, some of us are unemployed at the moment, or retired.
None of it matters in any way that counts for much. We’re still friends. We’re drawn together by this wonderful technology which allows us to speak to each other, easily and quickly, no matter where in the world we are. We’re drawn together by our enjoyment of and joy in writing and by an intrinsic need to communicate. To have community.
I find this … magical.
Perhaps I’m childish, but I’m just old enough to remember when television was pretty new, and I’m not talking about color TV. Those of you in your 20s and 30s think nothing of laptops and netbooks and iPods and iPads and cell phones that double as iPods and calculators and GPS gadgets. Entire movies you can download onto your computers in minutes seem ho-hum these days, but I remember when seeing a movie meant going to a cinema on a Saturday for the double feature, clutching $1.50 in my grubby fist for my ticket, a big box of popcorn and some M&Ms. Some of us in our 40s and most of us in our 50s and 60s, while embracing all this constantly changing technology with enthusiasm, still regard it with something like awe and even a modicum of fear.
Finally, you and I share something that only a small percentage of people throughout the world share: We have rheumatoid arthritis.
When I write about my hands aching and my fingers hurting, there isn’t one person among you who hasn’t also felt my pain. When you write about being fatigued, I know just what you mean. Stiffness and pain that makes you lay weeping in bed in the mornings, willing your joints to stop hurting and move, because you need to get up and get on with your day? I’ve been there.
When you write about your frustration with a well-meaning friend or acquaintance who says, “You have arthritis? Oh, I have that too, in my knee. I take a couple Tylenols and I’m fine,” I get you. I feel it. When I write about my reluctance to tell others why I won’t go bowling or would rather not be on the office softball team, you know what I mean. You can empathize. You know just how utterly wimpy it makes me feel, because you’ve felt that way, too. And you know my reluctance to tell co-workers or an employer about my RA for fear of losing my job. You’ve broached the subject with great caution, too.
But like me, this is your reality. Perhaps not all the time: some of us have periods of respite (I don’t like the word “remission.” It promises so much, then cruelly takes it all back) that last days or weeks, months or even years. But we still get it. We remember.
When one of you writes about a rude or uncaring doctor, I get pissed off with you. I’ve dealt with doctors like that, and I didn’t like them, either. When I write about the time my doc put a cast on my flared foot and sent me out of his office on crutches for two weeks, you can totally relate to my bemusement. When I went to him and begged for something, anything, to help me handle the pain, to please make it stop, you understand to the depths of your soul. Your hearts break for me, just as mine does for you.
Your stories of joint replacements – hips, shoulders, knees – make me cringe for you, knowing as I do the agony you must have endured and how long you probably had to endure it before your doctor decided replacement was the only answer. When I talk about the cane I have tucked away in my closet, just in case, you know why and you don’t think I’m being histrionic.
Your stories make me stronger. They make me think, and they help me prepare, mentally, for what I might need to face with the same courage you once did in my own future. You inspire me.
And when I write about how I dream that rheumatoid arthritis will be cured, once and for all, hopefully within my lifetime, I know you all agree with me wholeheartedly. I can almost hear the shouts of support, of hope, from all of you who share this incurable disease with me.
This post, then, is about all of us. About you, and how your kind thoughts and comments, your humor and sincerity, helped my hands feel better today. And about me as I return the favor to all of you, my friends.
I couldn’t agree more and as usual, so beautifully ssid.
What a wonderful post! You express so eloquently what I’ve observed in the online community. Isn’t it amazing how people we’ve never met 3D can be considered friends?
Thanks Wren, for putting all that so eloquently.
Thank you very much for this post. A good read indeed.
Oops – that was supposed to say [Virtual Hug] :o)
DUH – I used ‘triangular brackets’ and it stripped it ’cause it thought it was HTML.
Wonderful post, Wren. It’s snowing again but your post makes me feel all snug and warm!
Beautiful. I do love having my friends here and I appreciate that you take the time to leave comments on my blog and others. I always look forward to them. I am glad your hands are feeling better. 🙂
I agree with each and every one of the wonderful folks above me. I found myself nodding over and over and over as I read your post. I have to say, aside from my husband, and the rest of my family (puppies included as they are both right next to me) the web has given me one of my biggest blessings in my life- true friends. Now that you have me ruminating over my dear ‘net friends- I am sure it will be a post soon!
Thank you Wren- for your friendship, your support, your wisdom and your inspiration. You are a true gem!
What a beautiful, poignant post. Honest and real. I am happy that you are in less pain and your hands are feeling better. I couldn’t even imagine. Your words on community and friends were quite impressive and I loved your attitude and perspective. Well done!
Enjoy your weekend.
What a beautiful post, and so very true. I’ve learned, and continue to learn, so much from the friends I’ve made blogging about RA and chronic illness. You’ve all made me stronger, more confident, and you’ve given me the gift of feeling understood when it seems no one in the world could know how I’m feeling.
I’m so lucky to have found such a vibrant, intelligent and caring community.
What a lovely post. Connecting with other people who also live with RA has helped me so much during this past year.
A very good post. I get you and understand completely. Sadly for me only my husband gets me, most of my friends seem to think this is not a big deal. I’ve already lost one hip to replacement with the second one pretty much on the way out. I’ve also been informed by my ortho surgeon that both knees will need replacement some time in the not to distant future. My Rheumatologist on the other thinks if I loose one more joint she will have been a failure to me and wants me to go on Methotrexate to stop any progression. That being a chemo drug really scares me and maybe it shouldn’t. I already take Prednisone fore flare ups for 6 days tapered, has anyone else done that. RA is a bitch of a disease for sure and I hope for a cure in my lifetime. I still have a mountain to climb. I too have canes all over the place and I also have a walker for really bad times…ciao