(Or “How to Be Helpful and Useful to Someone You Love With a Chronic Illness”)
This is the post I keep promising to write. It seems to have grown longer and longer the more I think on the subject. It gets a little rambling at points, but I promise it’s worthwhile. Part II will get posted later this week.
I grew up with a mother with a chronic illness. It didn’t help that my father suffered from rampant, untreated mental illness until he, too, had chronic COPD from smoking three packs a day. I grew up with many adults wanting to reach out to me and my family, but feeling awkward about how to do it in such a way that didn’t feel patronizing, belittling, or making us feel like some sort of obligation or hardship on them. I’ve seen a lot of attempts, both good and bad, by people who deep down wanted to do something good and useful for our family.
I remember once, when this woman decided we needed help cleaning our house. Now, granted, I grew up in a very cluttered house. We tried to keep up, but my mother was physically incapable and my father was emotionally disengaged; so as children, we didn’t really know how to take the reigns and put forth an effort. So there was this woman from our church who decided to come forward and organize our house. The fact that we needed the help was undisputed. The fact that this was a good way for her to show her love for us is also not in debate. But how she went about it?
She came in the house with another woman whom we didn’t know. I’m still not sure who this other person was. And to be clear, the woman wasn’t a close family friend, either – she was just some woman from our church. We knew she was coming, and our mother had warned us that we’d be expected to help her; when she came in, we were all generally ready (as ready as young children faced with a day of chores in front of them could be). But she decided that, I guess in some sense to make it feel like a luxury, that she didn’t want our help. My younger brother and sister felt relieved, but it just made me feel kind of odd.
To make a long story somewhat shorter (Too late!), she came when it was convenient to her (I seem to remember my mom was in the middle of home dialysis when she showed up), she bossed us around, threw away stuff that we valued because it looked like trash to her, put things away in places that we never found again, shamed us about the cleanliness of our house through her words and attitude, and by the time she left, we all felt terrible. Granted, it was nice to have a clean house, but the price was too high. I know I didn’t go to church the next Sunday, and for the rest of the time we went to that church, I avoided the woman. (She always made comments to my sister, who suffered from chronic asthma and coughs growing up, which she hated and eventually drove her away from attending church altogether).
The point of me telling this story in the beginning of this entry is to illustrate that it’s not just what you do for someone with chronic illness that matters, but the spirit and attitude that you bring to it matters just as much. I’ve had people come over and bust their ass for me in a way that I have been eternally grateful for; I’ve also had people do tiny things for me and then they bring it up every single time we hang out socially, making me feel like I’m an invalid who can barely wipe my own ass.
So this is where I give you the post I have been promising for some time, called “Strengths and Weaknesses”. The reason I call it thus is because after you decide that you really do want to be of help to someone with a chronic illness is to find out what their strengths and weaknesses are. By offering to do something that is actually one of the sick person’s strengths, you invalidate their autonomy – when someone offers to help me out of a car, which I can do on my own, it illustrates to me that your internal image of me is of someone who can’t do that. In the same vein, teaching classes at events makes me feel like a human being; when someone tells me they didn’t or won’t book me because I get sick a lot, I understand their decision, but I would like to mention that I have canceled teaching events all of twice in the years I’ve been doing it, and that’s partially because teaching makes all of the time at home feeling like crap worth something. So canceling my teaching gig is not “helping”.
It’s important, therefore, to engage someone in a conversation before deciding how you wish to help them, or even just remind them that you’re a part of their “team”. There are lots of little things you can do – send a card, call and talk to them, bring over some food in a container you don’t want back, pray for them, have your religious group do a ritual for them or something similar. There’s a book someone bought for me (because I asked on Facebook), called “Beyond Casseroles: 505 Ways To Encourage A Chronically Ill Friend” by Lisa J. Copen. It was definitely written for a Christian audience, as some of the “ways” are actually scriptures, and some of the other “ways” have scriptures in them, but there are some suggestions that are actually worthwhile, like:
21.Ask, “Do you have an errand I can run?” before coming over.
41. Accept that the chronic illness may not go away. If they’re accepting it, don’t tell them the illness is winning and they’re giving into it.
73. When they say, “I’m fine” [or my version, “Hanging in there.”], say, “No, I mean how are you really? I know what fine means.”
94. Respect their need for privacy and personal space. Don’t assume that they are lucky to have you as a friend and should always drop everything to accommodate your need to extend kindness.
163. Don’t let the fear of not knowing what to say keep you from being in touch.
228. Bring over a homemade dessert when you know they’re having company.
280. Recognize that what they could do yesterday may not be possible today. Don’t question that. Every day is different.
313. Realize that the person living with chronic illness and pain probably needs you much more than the one going through a short-lived crisis. Many people are probably ministering to the one in the much publicized crisis.
[I changed all the gendered pronouns to neutral ones. In the book, the author goes back and forth between he and she, although I think she uses she more often, and many of the suggestions assume that the person with the chronic illness is a woman, since the author was writing from her own experiences.]
So that’s a taste. The book might be disappointing to someone looking for 505 hands-on things they can do – many of them are more about the way you think, interact, or expect of someone with a chronic illness. And like I said, some of the ways are little more than scriptures, which isn’t so useful if you aren’t Christian. (I also found it offputting that the first five pages of the book are all accolades – I get it, lots of people like your book – there’s no reason other than ego to print that many, especially since there are more on the cover!)
Overall, I liked the book. It did have some solid suggestions of what someone who feels completely helpless or overwhelmed can do to help someone with a chronic illness out. It gives a range of things, from just ways of thinking or praying, to little hands-on things, to big projects like getting your friends to raise money to send your sick friend on a vacation. I don’t know that I would give it to friends; most of my friends aren’t Christian and might find the many scripture quotes repetitive and unhelpful. But if you can look past that, it’s a cheap little book you can pass on to others (or buy in bulk) when someone you know wishes they could help someone but doesn’t know how.
End of Part I.
This is not the entry I wanted to write; this is the entry that is ready to leap out of my head.
I thought maybe my holiday malaise had to do with my health; I’ve been feeling particularly crappy as of late and the “holiday spirit” is a high spoon activity. But the more I consciously take a step back from all the holiday craziness, the more I see each activity as an “opt in” or “opt out” situation. I can choose to decorate my house, or not. (I have chosen not to.) I can choose to send cards to my friends, or not. (I have chosen not to.) I can spend spoons on shopping, either online or in brick and mortar stores, to find gifts for as many people as I feel I want to, or need to. (I have not.) I can go to holiday gatherings or places that have holiday representations (I did this, mostly to support friends). I can do ritual to celebrate my holiday, or not. (I have chose not to, although this is a more complicated issue.)
I have read several accounts, from people who celebrate a myriad of winter holidays this month, that yearn for a return to the simplicity of celebration. One that I particularly liked was this one, written by an Anglican priest about wishing he could strip Christmas from all of the consumerism and holiday “traditions” that have nothing to do with the birth of the Christ Child. It is, after all, a religious holiday that many people have decided to secularize because it gives them warm and fuzzies about their youth. (Also note this graph that makes the point that most popular versions of Christmas songs were recorded during the baby boom’s childhood, which is why they’re recycled year after year and newer versions are usually disregarded as “fake”).
This dovetails into something about Yule/Winter Solstice that baffles me. As a religion, there’s a lot that has been done to differentiate between Paganism and Christianity. For those of us who were raised in a Christian tradition, these differences matter. I left the United Methodist Church to come to a religion that was markedly different than what I had known before. Even though I bitch about it a lot, I value that in our tradition (for the most part), it is fairly easy to become clergy. I value that our holidays celebrate the cycles of the earth. And even though right now I am generalizing how most pagans feel about something, I value the idea that for the most part, pagans are encouraged to create their own sense of how the world works and what their mores and ethics are.
The only time of year where I see an incredible amount of bleed between Christianity and Paganism is Christmas/Yule. Granted, I totally understand that most of the trappings that we grew up understanding as “Christmas” (like trees, presents, lights, family gatherings, etc) were copied from older traditions surrounding celebration of the Winter Solstice. But for me, they look and taste like my childhood, which was Christmas. But more pagans than I can count hold onto these traditions, even Santa Claus, for their families and their children. And I hear it all the time – about how giving presents and trees and lights and decorations are not the purview of Christianity.
I dunno. I’m ready to concede that if Christianity wants the crushing crowds at Wal Mart, the feeling of obligation when your family requests that you travel during a shitty time of year to sit uncomfortably around a living room and try to be a “family”, the awkward feeling when someone you don’t consider a close friend buys you a gift and now you debate if you have to reciprocate or not, the many empty social obligations that tax your finances and your health, the crass consumerism and all the work that goes into creating a traditional Christmas, they can fucking have it.
I’m much more content spending the shortest day, and longest night, of the year alone in contemplation. Granted, I also like Yule rituals that focus on sharing what we already have (not what we have gone into debt to buy) so that we all make it through the winter – but for me, these days, that’s a lot more about emotional and social support and much less about physical or financial support.
This point of view may be strengthened by having a Jewish spouse. I have always thought I was aware of Hannukah, but it took actually talking to Jews about how much emphasis has been put on a secondary holiday in order to allow children to feel equal to their Christian (and perhaps Pagan) schoolmates. What I love about Hannukah is the simplicity of celebrating a singular, somewhat unremarkable miracle – the fact that when they needed oil to last eight days, it did. As someone who grew up poor in a house that used fuel oil for heat, I know I have experienced this miracle personally. And if anything, I choose to tie my Yule thoughts to this miracle – that by coming together, we can miraculously make it through the hard times together.
My life has become much more focused on the essential parts of an experience – I need to know, up front, what I want to get out of something before I engage in it. When your energy is low, and your health is challenged, you look at everything in your life and decide what the important parts of it are. When I go to an event, I look over everything that is happening, and choose the parts of it that I feel I really want to do to make me feel like I engaged with the event. Most of the time, that means teaching my classes, and maybe getting out to a social gathering or play space. I usually choose one or two classes that I’m not teaching to attend, but understand that it depends on how I’m feeling. So even though I may not be sucking the marrow out of every experience that comes my way, I can leave an event feeling like I got want I really wanted out of it.
This Solstice, I need to spend some time thinking about the parts of Winter we tend to ignore. We get all caught up in the pretty blanket of snow, but I’m much more concerned about what’s happening underneath. The dead leaves are rotting, turning into fertilizer, feeding the soil, so when spring comes the green life can erupt and bring with it new hope. Everything we parted with at Samhain is deep within the earth, brewing up new experiences and choices for us if we can survive the dark. So many of us have “turned Winter off”, by installing UV spectrum lights, so they can survive the melancholy and feeling of separateness that comes with the dark time of the year. Someone suggested, somewhat facetiously, that “Seasonal Affective Disorder is the reason for the season”, and I started to worry that maybe I, too, had this affliction. Let me be clear, I in no way mean to belittle those who rely on lightboxes to treat their mental illness; I just think that (similar to eating “gluten free”), it has become a self-diagnosed and treated “disorder” for some.
Even though I tend to get depressed this time of year, I choose to allow myself to experience these feelings of disconnectedness and worries about survival. In this three-part essay by Kenaz Filan about the power of melancholy, zie covers a lot of what I’m talking about here.
So I’m giving myself a lot of permission and comfort this holiday season. I am giving myself permission to only engage in what I feel honors what I’m feeling about this Solstice – and this year, it’s much more about the dark than it is about the light. I did get some good gifts, and gave a few as well, but I’m not giving out gifts out of any sort of obligation. I am only going to celebrations that hold meaning to me, or enhance how I choose to celebrate this holiday. I refuse to allow the stress of consumerism, or trying to recreate some fantasy version of Christmases from my childhood, to dictate how I interact with my religious holiday.
Happy Whatever-You-Celebrate, however you choose to celebrate it.
Short actual medical update: I saw my ID doc about what to do next, since I experienced withdrawal again when I tried to treat the TB. Unlike the “evil ID doc”, who just threw her hands up and told me she just wasn’t going to treat it, he admitted that this was too complicated for him to treat, and referred me to Johns Hopkins. This is not so great in my book, as I have had bad experiences at JH in the past, but at least it’s better than *nothing*. When I tried to make an appointment yesterday, I got shuffled around for ten minutes, and then put on hold for so long that I “had been on hold for the maximum allotted time”, and was forced to leave a message. Not an auspicious beginning.
Also, due to some complications beyond my control, I have put off doing anything with my neurologist until after the new year. So right now, I’m mostly in a holding pattern.