By Jenny Picciotto.
Holidays are special times for people who live with chronic pain. They remind us of the past, especially when we can’t do some of the things that once brought great joy into our lives. Even people who don’t suffer from daily pain or the loss of function, in other words, even “normal” people can get the blues around the holidays.
When everyone we see seems so happy, it’s hard not to compare our own state of mind to their perceived state of mind. Songs fill the air with upbeat tempos, reminding us to be kind to our neighbors and friends, to have a song in our heart. Sour grapes, that’s what it can feel like. Just when you should be feeling your cheeriest, showing up for parties and writing greeting cards, planning a feast, or shopping for gifts, the heavy feeling comes.
Your heart sinks and it feels like there’s a lead balloon where your brains should be. Instead of happy thoughts, your brain is stuffed full of feathers and you can’t make out what you have spent all your time on, you only know the day has passed by and your “to do” list is as full as it was when you began.
Used to be that Thanksgiving was a double duty weekend. We had a family dinner with all the trimmings on Thursday, recovered from our feast on Friday, played Saturday, and enjoyed a casual buffet while we trimmed the tree on Sunday. Everyone sat with their plates balanced on their knees nibbling crackers and smoked salmon with cream cheese and the Christmas box came out of storage.
Long ago we stopped buying a real tree. Living in Hawaii, it just wasn’t practical. They got shipped from Canada on a slow boat, stored for weeks in a dark hold. One year I noticed mold. The next year it was spiders. That was the end of the scent of pine for me. Ever since we have a trusty Costco tree stored in a box.
Once my husband got done wrestling its three metal pieces of trunk into unity and stuffing it into its decorative pot, we held our breath while he flicked the switch to see if the pre-arranged lights were still functional. Then the kids and I took turns unwrapping trimmings and decorating the tree with colorful globes, snowflakes, angels, cherished homemade ornaments initialed by tiny hands long ago. Having lived in Japan, we had a collection of origami cubes and lacquered eggs which are my favorites; and of course, everyone had their own personal ornament that only they were permitted to place in a prominent location on the plastic branches. It used to be a grand start to the holiday season.
Since then, things have become much more practical. The kids no longer live at home, so boxes sometimes don’t come out of storage at all, and if they do, I remind myself that every holiday item I put up will be one more chore when I take it down. A real bummer, thinking of cleaning up just when the spirit of the season is supposed to propel me into a decorating spree.
I just don’t do as much as I used to. I can’t. Having had CRPS for nearly 6 years has shrunk my life. Doesn’t everyone have to pace themselves – keep off their feet for several hours a day to avoid a night of unrelenting pain when all you can do is breathe and hope it doesn’t last for days? Where did the joy of looking forward to having people over or going visiting go? Seems empty without it.
I don’t like pacing myself. I’ve never been much of a disciplinarian and it’s hard to say no to every invitation you get because you are afraid you won’t be able to make it anyway and you’re tired of giving last minute excuses to hosts who might stop inviting you if you turn down all of their invitations at the last minute. Is she really sick or is she just avoiding me, you imagine them thinking about you.
I have been trying for a year to get to a cribbage night at the tennis club my husband belongs to. A group of ladies I used to know gathers once a month for a cribbage match. I can do that, I think, it doesn’t require standing on my feet or walking, but you can forget running. I just hope I’ll never have to run for my life, because I can’t do it. I can’t even walk barefoot anymore.
Anyway, I used to be a tennis player, and that was what I was going to do with my husband in retirement after the children moved away, that is, that was my plan then for what I was going to be doing now. Every couple needs to have something in common to fend off the shock of the empty nest, I figured, so it may as well be a social, fun, sporty activity we could do together. Forget about it.
I have spent the last 6 years trying to forget about it every week that hubby goes off to play tennis with his friends and I stay at home to do what chores I can in the morning before I need to rest in the afternoon in order to be in the least amount of pain as possible in the evening. Oh, right, that happens every day. Limit what I do, don’t walk too far, sit too long, or stand on my feet too long. Don’t walk the dog too far, don’t stray too far from home so you have a long return trip and get a flare that lasts a week. And if it’s raining or the flare from hell arrives out of the blue, you can’t do anything at all because you are breathing through the pain again, praying it doesn’t keep you down and out too long.
That’s what the holidays hammer home. The list of don’ts. Don’t do this, don’t do that, don’t wish you could do this or that. Don’t mope. Don’t forget to try to be happy, or at least to look like you are happy, even if you aren’t. (That’s one of the things people with chronic pain get really good at – looking like they are happy when they are actually barely able to hold a conversation with you because the pain in their body prevents their mind from functioning because their body is screaming in 3D.)
Usually we have some level of adaptation that prevents us from allowing wishes to form in our minds. The moment a thought begins to take shape we swish it away. It’s much easier that way. If I allow myself to wish I could hop in the car on a sunny day on a lark and go for a nice walk on the beach or drive to the mall to go shopping, I will begin a well marked path on a downward spiral, listing all of the things I can no longer do. My head will droop and my chest will cave in. I look in the mirror and swear there are frown lines where there used to be dimple smile marks.
Ever look at the face of someone in pain? Their eyes are dazed and turned inward, with a wrinkle between their brows. Their mouth is compressed into a tight ball as if they are sucking on a sour lemon ball. They might look a bit confused as if they are working out a difficult equation, or they might look fearful. People who live in chronic pain have mastered the art of the blank face as a mask for what lies beneath.
At least that’s one of my methods of coping with the pain. Total relaxation. Why fight something you have no chance of winning? I did that for the first year or two, tensing my muscles and trying to find somewhere to escape to out of my body. But there isn’t anywhere to go and you have absolutely no control over the sensations in your body. It’s as if your body no longer belongs to you, and has developed a capacity to attack itself, like the eagle who repeatedly ate Prometheus’ liver. Just when it grew back, there that damn bird would be pecking a fresh hole in his stomach to rip it out again. Being sick with chronic pain can feel like that.
And during holidays, it’s as if a whole flock of them are gathered, picking at the tender morsels of your emotions, reminding you with their shrieking cries that you are not whole, you are not normal, you can’t participate, you can’t do what custom insists must be done, whatever your custom may be. Mine is cooking and hanging out with family and friends and staying up late and writing greeting cards and going shopping and wrapping gifts at the last minute while I’m roasting a leg of lamb and baking scalloped potatoes and making merry. Nope. Can’t do it.
So when I feel like this, when the holiday is just around the corner, I use every spare moment I have and squeeze what I can out of it before my body takes over and forces me to go lie on the couch with that blank stare on my face counting my breath and relaxing my muscles progressively to cope.
I went to the post office the other day to mail a package to my daughter and her husband in Australia. It’s summer there, but I bought them a throw for their couch anyway. I was going through the airport in Seattle and found this beautiful faux fur throw in a shop full of locally sourced kitschy items. It was irresistible. I figured it will be winter in Australia soon enough and anyway, I live in Hawaii and I’d like to have that throw, so I got it for them.
I had wrapped it up and filled out the customs form at home, but when I arrived at the post office and tried to stuff it into one of those flat rate boxes, it kept spilling out of the ends of the “large” box like custard out of a cannoli. I found myself looking at the line up waiting for the postal clerks nervously. How long would I have to stand in line? Could I do it? I kept stuffing the darn thing back in the box, but now the ribbon was sliding off and I was afraid the wrapping paper would start to tear. Fortunately a worker who was emptying the trash saw my predicament and offered to get me a “game box.”
I’d never heard of a game box, but after a couple more efforts to stuff the throw into the large flat rate box with no success, I was game to try the other box. I waited nervously as she disappeared into the bowels of the post office, estimating the wait time in the line of people, who had obviously arrived better prepared that I was. One lady was asking for a dolly to help her bring in 10 boxes. 10 boxes, I thought, my God, if I tried to pack up 10 boxes I’d have to rest for a week to recover!
I ended up fitting the throw into the game box and made it to the counter with my customs form all filled out, and the holiday spirit had me in its grip. I was watching all the packages and all the people carrying their packages and noticing the “mail by” dates posted on the wall reminding everyone how long they had to get their holiday spirit to its destination before it was too late and before I knew it I had purchased seasonal stamps.
It was one of those moments when I didn’t put the lid on my “want to do it” mind in time and now I had 2 booklets of stamps. They come 20 to a package and it dawned on me that I had just committed to writing a holiday letter addressing and stamping 40 cards and making a return trip to the post office. A promise I’m not sure I can keep. I think most people think I fell off the face of the earth since the last time they heard from me was 6 years ago.
I looked at those stamps today, and thought, well, you better start now, because before you know it, this holiday is gonna be over, and you have a lot of recovering to do between taking all those rest times on the couch and cancelling appointments and scratching things off your to do list, not because you got them done, but because you are out of spoons, as they say in the land of the chronically ill. Which means you have to ration yourself, like it or not, or you will have less spoons to use tomorrow.
Inverse reasoning, that. I better do less today so I have something left for tomorrow, that’s the way it goes. While I might look fine, and feel fine just right this moment, wham! Next moment I could be back there at ground zero with throbbing pain stabbing at my want-to-do self, wishing, only wishing, that I had not been so enthusiastic, or so crazy as to think I could do what a normal person is capable of. What I used to be capable of. What I can sometimes not prevent myself from wishing I was still capable of!
Where is that broom? I need to sweep these silly thoughts out of my head right now before down the rabbit hole I go again. It’s bad enough being stuck on the couch, without having to share it with that lead headed holiday spirit that only seems to get me into trouble when I let her in. Better not to wish for what you can’t have, than let your mind get the best of you. At least, that’s one of the ways I cope. It’s how I cope with my list of wish I coulds. I whisk them away, stuff them under the rug where I can’t see them, so they can’t remind me that I’m not as whole as I was, once upon a time. It’s only practical.
So whatever you wish for this holiday season, I hope you can savor every moment. It’s one of the things that living with limitations teaches us, that it really is the little things in life that matter, and moments are more important to me now than ever before. I hope you can savor every one, whether it is the holiday season or not.
The author, Jenny Picciotto is a writer and CRPS patient who enjoys reading and playing the piano. She was a yoga instructor and massage therapist before CRPS changed her trajectory. She currently lives in Hawaii, where she facilitates the Oahu CRPS Support Group.