I was thinking, while we were in Asheville, about Dresden lace figurines. They’re porcelain figurines decorated with very realistic-looking lace, which is created by dipping cotton lace in porcelain and applying it to the figurine. The cloth burns off in the kiln, leaving the ceramic lace behind.
They’re very beautiful, but exceedingly fragile, and not infrequently the ones you see on offer have had some of their lace broken off over time. It struck me that this is a rather apt metaphor for ME. It makes us exceedingly fragile beings, prone to damage from everyday handling, and we have to be extraordinarily careful of ourselves. We’re each to our own extent in pieces, and we have lost to the disease various bits of what makes life beautiful along the way.
For example: The evening we arrived in Asheville, Chimp realized that indigo girls, one of my all-time favorite groups, were in town that night (their facebook page seemed to have been keeping it from me so as not to break my heart). Having to forgo a show I would have surely been at were I able made me think about all the activities we could be doing on that trip if I were well, all the activities I can’t do. And that led me back to the delicate fringes of the figurines, and all the other beauties of life that have gone out of my reach since I fell sick in 2004 – activities they are figured performing. So what is the lace of life? What have I lost, and how long have I lived without it? Illustrated, in order of their disappearance:
Visiting family. Chimp and I used to spend Christmases with my mom and extended family in Indiana, then visit Maryland to see his folks. The last time we were able to do that was 2003; after that, I needed to rest rather than travel over Christmas, so I could keep my strength up to work. Every year we would call my mom’s house on Christmas, be passed among the 20 people there and I would hang up and sob inconsolably. In 2008, technically I was at my mom’s at Christmas, but I was totally bedridden – too sick to leave my bed and be wheeled out to the living room – and all I could manage in terms of seeing the rest of the family was letting a couple people come stand in my doorway and wave.
The out-of-doors. Back in Virginia, I loved to hike, to run trails in the woods, and hunt wildflowers. When we first came to California from Michigan, I bought a western wildflower guide, assuming I would be able to explore our new state the same way – but I never got to use it. The last time I got out in nature under my own power was during a September 2005 work trip to Carmel. Against my better judgment, I got roped into a tiny hike. I managed it okay, and I got a few nice photos out of it, but the way I felt the next day reinforced my knowledge that it wasn’t something I could do any longer.
Dancing. Before I was sick, dancing brought me immense joy – at any party, I was the first person on the dance floor and often the last one off. The last time I danced was in October 2005, at an evening party hosted by my organization at a trade show. The music and company were so tempting that I couldn’t help but risk post-exertional malaise. The next day, an agency colleague who’d stayed a wallflower, despite me trying to rope him into the crowd, told me how fun it’d been to watch me cutting up flamenco-style with one of our shippers on the dance floor. It was fun for me, too.
Live music. Ticket and sometimes tour expenses used to be a significant budget category for us. My last live concert was CSNY in Fresno in 2006. I’d seen Crosby and Stills at a benefit show in 1990, and had wanted to see Neil Young forever. I nearly didn’t make it to the show – it was the middle of the 2006 heat wave, our air conditioner had gone out, and we’d had to drag ourselves and our three cats to a hotel. By the time I got to the hotel room I was close to collapse. Against my better judgment, I rallied to the show, with Chimp dropping me off near the entrance. I made it to intermission, practically lying in Chimp’s lap the whole time, and had to be taken out in a wheelchair, missing the second half of the show. I did get to hear the ever-classy Fresno crowd boo Young’s “Let’s Impeach the President,” which was totally ridiculous, given how much money they’d forked over to hear it. But I saw Neil Young, and that was the last of a bunch of big concert checkboxes I’d wanted to mark, though the price was very high – a crash that cost me the ability to commute to the office.
Travel. Before I fell ill, I had always assumed that Chimp and I would go many places together, between conferences for his work and exploring the places we would move. While I was able to manage some travel for a while, eventually I lost this too. The last pleasure trip we took was from California back home to Virginia so I could be a bridesmaid in my friend Karen’s wedding in October 2006. It was the first time Chimp had to trundle me around in a wheelchair for an extended period, and I barely left the hotel room – when I wasn’t at a wedding event, I was lying down.
Parties. In Virginia and Michigan, Chimp and I were inveterate party throwers. When we got to California, between his department being totally dysfunctional and my work situation not leading to friends in the way it had in the past, we didn’t develop a coterie of possible guests or hosts. So the last non-work-related party I went to was a 2006 solstice shindig hosted by the owner of my favorite vintage store. Her yard was decorated with colorful bowling balls, the charming small house was chockablock with the best sorts of flotsam and jetsam you’d come across if you ran a vintage place, and the guests were as various as the decor. I wore a loud 1960s pink, green, and yellow velvet shift and fit right in. I wish there’d been more moments in California like that.
Dining out. We went out with a bang on this one. Our last meal out together was the 2007 Fig Feast in Fresno, the night before my 32nd birthday. Alice Waters came to speak at our farmer’s market during the Fig Fest that morning (being an inveterate foodie, this is my sort of “meeting a celebrity” picture) and we had a lovely four-course dinner with her and some hundred-some of our closest friends out-of-doors that August evening at the Chef’s Table restaurant. I could only taste the wine pairings because of alcohol intolerance, but it was still a delightful treat. Between the vegetarianism, the sodium intolerance, and the histamine problem, sadly, even takeout is not an option for me these days.
Singing. I know I’ve discussed this previously. When my ME/CFS was still in the mild category, my ability to sing was a barometer of how I was doing, and whether I was going up or downhill; I would lose it when I got worse and then get it back when I got a little better. Fall 2007 was the last time I picked up my guitar and sang something all the way through. I can wheeze out a phrase or two, but as my diaphragm has atrophied along with all my other muscles and my cardiac output is low, I don’t have the support or the breath necessary to sing. This is almost as painful as not being able to listen to music – I had sung every day since childhood, whenever I was in the car and along to whatever music I had on at home. It was nearly impossible not to; it was just what I did.
Getting done up. Fall 2007 was the end of this as well. I went clothes shopping for the last time at Anthropologie in Fresno in September. I struggled exhaustedly through the dressing-room process that day and bought a couple pairs of pants, which I never got the chance to wear anywhere. They’re still in my closet with the tags attached. Around the same time, I ordered a pair of Fluevog boots and then returned them, despite adoring them, because it was clear I was not going to get the chance to use them either. This is also when I stopped getting haircuts. My ability to get ready for the day – the ability to stand long enough to shower and the energy to do so, styling my hair, makeup – all ended with the end-of-year crash. My pressure sensitivity emerged at that point and I switched from jeans and a top at home to All Pajamas, All the Time.
Recorded music. It’s fair to say that I was a music obsessive before I fell ill. Chimp and I have thousands and thousands of CDs between the two of us. I was an early adopter of satellite radio, which was a terrific way to hear new things in the early to mid-00s despite living in an interesting-radio desert, and considered being up-to-date on music to be an important part of my life. With my late 2007 crash, my ability to listen to it plunged to the degree that it was eventually impossible. At this point, it’s a little better – I can sometimes listen to a song or two at a time, but I am hopelessly out of touch with what’s current, which continually breaks my heart and makes me feel completely uncool.
Books. The last time I was able to hold and read a physical book was May of 2008. I tore through Lolita and a couple other novels in one week, and then suddenly didn’t have the energy to hold a book and turn pages anymore. I read books online, where all I have to do is press page down, but there are always things – old and new books – that aren’t available electronically. Given the volume I can read, I hate having to pay for it when I used to be able to go to the library, and I miss haunting used book stores wherever I happened to be.
Walking. As I worsened in fall 2007, I tried to keep up with the ten-minute daily walk I’d been taking around our small apartment complex, so as not to become totally deconditioned. But eventually even that was too much – between September and December I went from doing a loop of the complex to doing one side of the loop to doing half of one side of the loop to being unable to walk more than to shift from bed to couch. And I remain pretty close to that.
So considering all this, is it any wonder that I feel as if my lace has been smashed off over the years? I still have love, and a lot of wonderful friends and family, which are the most important things, but even having that, it is hard to live with all these can’ts. I know that lace is just decoration, and from day to day I’m relatively content, but the lack of it is for sure the thing that keeps me going back to Dr. Cheney and opening bottles of new kinds of supplements, hoping each new approach will be the miracle that puts the flourishes and frills on my life again.
Have you tried library ebooks? Posting this just in case you didn’t know – a google search should find it for your state. The selection is spotty but it’s nice to have more reading options and be able to take a chance on reading something knowing if you don’t like it you can just send it back.
I have looked at them for my county and a neighboring county. My county has nothing of interest to me, and the neighboring county requires you to be a resident. I will try looking further afield, though, since PA is a big state. Thanks for the suggestion, Jan.
You’re such an interesting person. I know you miss all you used to be able to do. You have a rich background of experiences, though, and you certainly have a way with words, wit, and wisdom. So glad I can get a glimpse of who you are–much more than that which is related to this awful illness.
Oh, thank you, Peggy, that’s lovely of you.
It is quite sad to think of all the things that we lose through ME, but I think you are a wonderfully inspiring person, especially when we know the amount of energy that goes into maintaining this blog, and that is something you have not lost 🙂
Well said. cbblondie.
Thank you, cblondie. It’s kind of you to say so. Indeed, there were years when I couldn’t have maintained this blog at all. I am very grateful that I can.
I don’t know if this a good suggestion, but you can try the bookseat, it holds the book for you in a type of cushion holder. It also holds kindles.
Good thought, Rachel – I saw a holder recently I thought I might try. That would help some, though I’d still have to turn pages, and within my current abilities that’s a lot of exertion.
Suggestions aside…this was a beautiful, moving essay. Thanks Jocelyn.
I can relate to so much of what you’ve said here. Thanks for saying it so well.
Thanks for the kind words, Curiosity, but sorry to hear you can relate, of course.
Very lovely, beautifully written post. I can relate to a lot of what you’ve lost. I do, however, still read books and my newspaper, watch TV and use the Internet. Thankfully, that way I found your and other like-minded blogs.
I have a lot of plans for fixing up my apartment, or I thought this when I had energy. Now I don’t so I don’t know what is even realistic at this point. I wanted to go to the grocery store tonight and get frozen yogurt or ices as I’m starting to get the CFS-overheating. But I couldn’t.
i’m afraid of forcing myself to do anything because I forced (toughed it out) myself to go to the post office with holiday gifts in December, fell and broke my arm, which is still not healed. So, I’m done with the tough it out philosophy.
I realize that I overplan and can’t do all (even limited) things I plan. So, I must be more realistic.
I hope you can enjoy your beautiful garden and summer vegetables.
It is very hard to live with all of these disappointments, true. It takes constant adjusting and rethinking. To me now, just reading, TV, computer, having food delivered and talking to a few friends as well as petting the neighbors’ dogs is about my speed.
We appreciate your blog enormously.
Oh, Kathy, so sorry to hear about the broken arm. That would be very tough to heal with limited energy. I hope it does so right away. Thanks as always for the kind words.
Thank you for such a lovely post, with analogues to lace. Who would have thought? But it is fitting. And thanks for your sympathy on the broken arm. It’s actually hearing now, but it’s taken nearly four months.
When I first broke it in December, it was tough. Then I got sick on New Year’s Day for 4-5 weeks on top of the CFS. All of it was so overwhelming, I could not deal and sat in my nightgown for two weeks, watching TV and reading, doing nothing else. (I couldn’t change clothes, too painful, though I managed showering/washing my hair with one hand occasionally.)
it’s amazing to realize how reliant one is on one’s arms and hands; everything was hard and some things impossible to do, and my sympathy for people with disabilities like this went way up.
This post is also to say that my overall stamina with ME/CFS has worsened. I wrote a list of everything I need to do with my apartment (and personal stuff, clothes, etc.) and I have barely been able to do anything. Last week I readjusted what I can do in a day and was doing errands in my neighborhood — got half done, and had to sit at the bank, library and dry cleaners. I came home exhausted after two hours out. I had to seriously readjust my thinking.
Saturday, I did 3 errands within 3 blocks of my house, came home wiped out. I don’t
know what is going on, but I now have to readjust what I can do.
I just don’t have the partial stamina I had before my broken arm.
And now allergies are contributing to the problems.
beautifully written and heartbreaking…..i understand it all much too well. here’s to our miracle may it come sooner rather than later (or even worse never)
thanks for sharing so much of yourself and your lovely husband with us. it is one of my few enjoyments left in life.
This is such a beautiful metaphor; I’m sorry that I hadn’t read it sooner – I’m so behind with everything! Oh, to be able to bear twenty petticoats! 🙂