We’ve been together fifteen years total, and this was eleven years ago this month.
One of the more difficult things to deal with about being this ill is the feeling of uselessness imposed by my physical limits. Even as long as I’ve been ill, I’ve never quite gotten over the guilt of not being able to do what feels like “my share” anymore.
I grew up with a pretty strongly feminist streak, and in envisioning my life as an adult, I anticipated having an awesome career, maybe getting married, and that if I did, it would be to someone as feminist as I was; someone who would want us both to contribute equally to our household. Dividing our obligations that way seemed like the only fair way to operate, and fairness – as a reflection of equality – was enormously important to me.
When Chimp and I said “I do” in 2001, we wrote not only our own vows, but our own fairly non-traditional ceremony. We didn’t include the words “in sickness and in health.” Chimp had been dealing with ankylosing spondylitis since his teens; I had watched him get out of bed like an old man for years already. I thought I knew who was going to be the sickness and who the health.
My losing the ability to contribute financially and physically happened at the same time. At the end of 2007, after several months of insomnia, I had a crash at Christmastime from which I’ve never recovered. I was struggling just to get back and forth from bed to the couch, and I said to Chimp, “I can’t go back to work in January. I don’t want to stop, but I can’t physically do it anymore. It’s over. It has to be.” I remember the panic written on his face, the hopeful assurances that maybe if I took a week or two off, that I’d bounce back, that it’d happened that way before. But that crash turned out to be the one we’d worried about coming.
Since then, having to deal with needing much more care than a normal adult human, in combination with that old fairness streak, means I constantly have to resist feeling like a drag, a burden, and an obligation.
Feeling that way is pretty much all me, though. Since I became bedridden in 2007, both my mother and Chimp have stepped up in a way that I know has been an incredible challenge for them. I don’t expect that either of them thought that in my thirties they would be helping me get baths and bringing me my meals on a tray. But if it’s a challenge for them, it’s not something they’ve ever made me feel bad about.
The degree to which they’ve stepped up is somehow exactly what I would have expected of them. Not “expected of them” in the sense that I feel I was owed it by any means, but in that it’s a perfect reflection of their compassion and loving natures. There are so many things that I’ve had to rely on them for in the last few years, and it’s been both a humbling experience and an ongoing lesson in gratitude.
Because of how much I have to have done for me and that fairness streak, I try never to take any of it for granted. From sunup to sundown, I’m constantly thanking Chimp for things. For going for groceries and prescriptions, for cooking, bringing me lunch, each of the dozen steps in helping me get a bath, filling up my water pitcher again and again, fetching things from hither and putting them thither and vice versa. For bringing me dinner, cleaning up the kitchen, doing laundry, changing sheets, tending the garden, fetching my pill cups, filling up my pill boxes at the start of the week. In thanking him, I make a point to stop what I’m doing, smile and look him in the eye each time. It seems totally insufficient in return for all he does, but it doesn’t cost me anything, and it feels like the least I can do for all he does for me.
And one of Chimp’s best qualities is that when I say I feel guilty about all of this, he never makes me feel like I should; he always says he’s not keeping score, that he’s never kept score in our relationship, that that’s not what our relationship is about to him. I deeply appreciate it, and I don’t know if I could have managed to do the same if the situation were reversed. Would that sense of fairness I was carrying around have turned into a streak of resentment, if the tables were turned?
In return for all he does, I do try to do absolutely as much as I can to help within my abilities. I don’t have great physical stamina, but one thing I do have in abundance is free time. So I plan our menu for the week, keep my bathroom and bedroom neat, order things we need online, do the garden planning and some of the easy planting and harvesting when I can, take charge of sending greeting cards and choosing birthday gifts, and have spent the last three years gradually making the house our own with a small budget spent on ebay and Craigslist.
When I write that out it doesn’t seem like much.
But Chimp knows all this, knows that I do all that I can, and that I constantly wish I could do more. The other night, as we were having our usual bedtime hangout and cat playtime, I said to him, “I wish I could work.” He didn’t reply. What is there to say to that, really? He knows what I mean by this shorthand. He knows all about my sense of fairness, and he knows what it continues to mean to me. That I wish I wasn’t so dependent. That I wish I could make my own money. That I wish I could go out into the world. And he knows I couldn’t so much as get up in the morning, take a shower and dress myself for work, and I’ll probably never be able to again.
“I know,” I said, after a moment of silence between us. “I should just be grateful I’m still here. I am grateful I’m still here.”
“I’m grateful you are too. And if someone had told me everything we’d go through, I would do it all again to be with you.”
And all these years after I married him, that’s what I’m most grateful for.
No Poster Girl 
Things got a little dusty in my room at that last sentence (totally brought tears to my eyes). Chimp’s such a good egg, and I’m glad you found each other. Xoxo
Thanks, sweetheart.
What a dance you and Chimp live! You two have learned steps I never wished for you. You have built a life I could never have envisioned. What I imagined for you didn’t come. And you impact the world more than most of us in spite of your restrictions. I am grateful you are my beloved daughter. You are a treasure.
And I, obviously, am very grateful you are my mother.
Oh Jocelyn…so much bittersweet truth in here. It was your Mum’s comment above that brought we totally undone – you are blessed to have her and Chimp but they are equally blessed to have you, even if none of it has come to pass as all of you envisaged or would ever wish. Here’s to the next 15 years. XXOO
Thank you, Kiki. Here’s to that.
No score keeping is needed. I’m grateful that two wonderful, excellent people are together loving and appreciating one another . Love you both.Susan
Thanks, Susie.
Wow! I teared up throughout your post and then your mother’s comment. If ever there was a love story, this one is definitely it. You both could write a book advising people how to live with each other through illness. The love and mutual respect shines through. I remember what your spouse said in one of his posts, and I paraphrase as my memory isn’t great; it was something like, it would be hollow if to be a peace one had to sacrifice love and solidarity. That is quite a statement.
I lived with someone who was seriously ill. I would have done anything for him. We respected and listened to each other. That was key.
It takes a lot of strength of character to weather an illness and to be the partner of someone who is ill. You both have tons of that and so much more. Really, it’s inspirational to others. If only all couples could deal with illness like you both, or deal with adversities of all types. You’re both special people.
Thanks, Kathy. I think you’re precisely right. It’s funny; Chimp and I met just as he was beginning to write his dissertation in grad school. This is a process that can be a real trial to a relationship, but it was a honeymoon for us. It was a good foundation, though – it prepared us to go through a lot of trials together, from him going on the academic job market many times over, to moving from state to state, to me getting sick. I’ve always said he and I could have a good time just going to the DMV together, and that’s true – no matter what we’re doing, we enjoy it, because we’re together. I don’t think many people find someone they are this compatible with, and I give that a good bit of the credit for the fact that we’re still together through all this. The rest of it is a bit of the quote that was on the front of our wedding program, from Antoine de Saint-Exupery: “Love does not consist in gazing at each other, but in looking outward together in the same direction.”
That picture is beautiful!
🙂 It’s one of my favorites, taken by a family member – just a happy accident, as they were not trying to focus on my bouquet.
It’s kind of amazing how our stories are all the same (I, too, live with ME/CFS). We want to work, don’t want to be a burden… I know it doesn’t mean much, especially from a stranger, but hang in there. It took some time, but I figured out I could run an online yarn/fiber shop, making things only when I feel good enough to do it (although I also have to admit I pushed myself too hard this weekend and am paying for it right this moment). I see a lot of doctors and get occasional help, but never complete relief. And nothing gets rid of the fear or relapse when you do feel good.
Anyway, I just wanted to make a comment to let you know that there is yet another sufferer out there paying attention. I wish you well.
Thanks, tlc! I’m glad to hear you found something that you can mostly do, and hope you’re feeling a bit better by now since the weekend. I have been thinking a lot lately about wanting to find that thing, about how much better I would have to be in order to do the things I would like to do. It’s hard for us to underdo it, isn’t it? No matter how much or how little we’re able to do, there’s always the tendency to want more, and you’re right, we’re never free of that dread of what might happen *someday*.
Happy anniversary! I completely understand how you feel about the fairness thing, I really struggle with the guilt of not being able to do what I feel I ‘should’. Thank goodness that Chimp and your mum have been such compassionate helpers, they’re absolute bricks. Here’s to many more years of togetherness, whatever form they take. 🙂
Thanks, IE! I know it’s not the easiest, but let’s all take the opportunity to be kind to ourselves, shall we? 🙂 I will if you will.
Yes, you are privileged. Partners like these, are very rare. And it is hard to explain to someone, without being cheesy and over dramatic, that you know you have been lucky to catch one. I know I have one. And although I am very able-bodied, he does so much for me and our family. Above and beyond the call of duty, so to say. I harbour guilt about how I sometimes treat him … real bitch on a broom stuff.
On a really brighter note, though, I just loved your flowers on your special day. The most fabulous colours and they complimented you both down to a tee!
Thanks, rosfromscratch. I always tell people that Chimp and I both think we got the better end of the bargain. It’s a nice way to feel. And I picked that bouquet out of an FTD booklet…a friend is planning her wedding now and I’ve been looking through ideas with her…and I ran across that bouquet included on a website! I’d pick it all over again.
I am so glad you have Chimp! It sounds as if and my Hubmonster are cut from the same cloth.
A remark from the Hubmonster yesterday: “Hey, it doesn’t matter to me what your bod is doing (other than upsetting me because you feel so bad), it’s still YOU in there. Besides, I knew the job was dangerous when I took it…”
Good men, we should have them cloned or something.
Siobhan, that’s a wonderful way to put it! We feel so beleaguered by our bodies; I know I sometimes forget that Chimp is not as annoyed by it as I am, having to live in the middle of all my accommodations and restrictions as I do.
I so know how you feel, I have Fibro and a whole lot more. I appreciate my husband so much and I do not take him for granted but I wish I could do more too. I blog about Fibro and Hashimoto’s Thyroiditis and…. on my blog, please stop by and say hello. Lovely to meet you. Laurie @ hibernationnow.wordpress.com
Thanks for coming by, Laurie! Welcome! Wanting to do more is so universal among us sufferers, isn’t it? We’re always comparing then with now, or ourselves with others. Sorry to hear you too are ill.
Best wishes to you, Jocelyn and Chimp, and hope that you have a good holiday, with lots of fun and excellent food.