Hanging In There

August 21, 2014 at 1:42 pm (Disability, Living, Living With Chronic Illness, Mental Health, Spiritual) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , )

If you’ve ever had any kind of conversation with me, regardless of the medium, there is an incredibly high probability that when you’ve asked some version of “How are you doing?” I have responded with my fallback, favorite, non-pessimistic, doesn’t-drag-you-into-a-conversation-you-didn’t-want-to-have response:

“I’m hanging in there.”

Those who get to know me more intimately hear that phrase so often it begins to lack meaning. Or they’ll see a twinge, a wink, a deep exhalation; something to cue the listener to the “where” I might be “hanging in”.

I learned at a party four years ago that “How are you, really?”, can easily be mistaken for “I know you had a medical ‘thing’ recently; please tell me how miraculous your healing has been so I can feel good about the world.” I know some people actually mean “I read your blog and I have a general sense of the technical side of what’s not working for you; we’d just like some secret stuff not shared on the blog and I know some pretty awesome doctors who treat Ginger Cancer*.” But once the gathering gets past the awkward social niceties, no one is sure what the next step should be. (If you’re roleplaying 1950, I believe it is to take his hat and coat and usher him into the downstairs sitting/crochet/wielding/welding/spelling correction room while asking him about coffee preferences.)

Sometimes people really do want to know how I’m feeling, generally or right in the moment. Maybe they read this blog and want to hear some of the wacky stories straight from my mouth, or they want to ask questions about things I’ve written.

And sometimes people are super grateful when I answer with something so non-committal, so they can skip past the whole ‘Del’s life is hard’ part and get straight to the “Do you want to go catch frogs with me?” mode. Or just about any other question or conversation or activity.

People are correct that when I go to a party or fun gatherings or even just have you over for hangouts, that I am both of the following at the same time:

  • Totally willing to answer any questions or share any details about my medical journey. Remember, that’s what Baphomet said in the beginning of all this, was to share my experiences as far and wide as I can.
  • Sick and fucking tired of every conversation I have with any human being on the planet is somehow related to me being sick, disabled, or in pain. I want to pretend for an hour or three that I’m just an average ordinary Joe doing ordinary Joe things like going to the movies or setting my friends on fire. Y’know, stuff that just happens every day.

I have been getting MUCH better at setting and supporting boundaries around these things, including being totally willing to withdraw into my bedroom if we are hanging out and I’m starting to feel weak, tired, in pain, etc. I warn people before they visit that it will happen, and sometimes it happens for the majority of a visit, and sometimes it was just during the most critical moments of why they came to see me. But there’s nothing I can do about that, so I accept it and move on.

Too Intimidating?

Another social thing I’ve been trying to figure out lately is that many people think of me as being intimidating. I think the first time someone brought this to my attention was a wonderfully powerful and bodily petite Priestess. We had been to a lot of the same events and such, and when necessary we’ve have fun and interesting but politely distant social contact. I couldn’t really tell if she liked me as a person, or if she was being respectful of my experience while secretly disagreeing with any one of my many unusual beliefs or practices, or if she just thought I smelled funny.

Anyway, said Priestess comes striding into my cabin during a camping event, and sits on the edge of my bed. “Del,” I paraphrased, “I am done being intimidated by you.

This is the sort of thing I hear a lot. People saying that they read something I wrote or went to one of my classes or saw me at a party but couldn’t approach because I am intimidating. It baffles me, as I try to be open and warm and friendly, even though I am introverted down to the remnants of my toenails. But it’s a perception, and all I can do to change perception to be reliably un-intimidating (whatever that looks like).

I mean, it’s nothing like what you’re going through…

People are sometimes afraid to talk to me, especially about wellness-related issues, because they’re afraid that being worried/upset/tired/challenged with their health situation when compared to whatever they perceive I’m going through.

What you don’t see is how that reflects on me. Here are some of the things I hear between the lines when people say things like this:

  • You’re so much sicker/weaker/poorer off than I, so much so it’s only okay to talk about your struggles all the time.
  • You’re never going to take my struggles seriously because yours are so much bigger and more threatening than mine,
  • You are so, so ill that even a simple conversation causes you pain, so instead I will only engage in flighty small talk with you.

I’m sure you get my drift.

Now, this is not an invitation to grill me further the next time I tell you I’m “hanging in there”. Sometimes I really do need a little pushing to open up about things, partially because I find myself telling the same stories over and over again (Baphomet sorta promised me this blog would stop that from happening), and partially because I don’t want to waste the 20 minutes of face time I’m going to get with you at the party/gathering/concert/event to be all about my blood sugar numbers and my O2 sats.
I also have a hard time telling who really wants to hear every single detail about what tests I’ve had and what they’ve shown and who all the “charming players” there are (I not-so-secretly nickname most of my doctors and nurses, especially if there are ones that stand out screaming for one. This trip to JH has given us several – Nurses Anxious, Snake, and Afro; Doctors Bopper, Blondie, and Randomly In Charge; even techs like Pocket Fairy and New Best Friend. In fact, I’ve been asked to come up with a new cast of characters and why they got the nicknames they did, so I’m going to end this post a little prematurely so I can take a break and then tackle that. The next post will also likely have much bigger updates as to what’s going on and why I’m not discharged yet…

….and I just may have found my Zebra hunters. Oh yes, another nickname. The “Zebra” thing comes from an old medical school saying – “When you hear hoofbeats, think horses, not zebras.”

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Caretaking the Caretakers

March 29, 2012 at 12:12 pm (Living, Living With Chronic Illness) (, , , , , , , , , )

Being a person with a chronic illness, I rely heavily on the love and kindness of people who, for whatever reason(s), offer me a great deal of consideration and help in order to make my life not just a liveable place, but also a worth-living place. Without these people, I would have problems with everything from eating to getting to doctor’s appointments to dealing with my emotional response to disability and beyond. It’s so much more than just making sure the Del-shell isn’t in imminent harm. It’s a complex and tiring job, even when distributed among several people.

I have a veritable cast of characters that keep the Del ship afloat. Recently, there are four people who do the brunt of the work:

  • Rave, who has taken on the bulk of the Del transport. She cleans my house, she packs me for events, she cooks meals, she handles my correspondence when I can’t, she knows more about my calendar than I do, and she is content to sit quietly at my bedside for hours just in case I might need something I can’t get on my own.
  • Fuego, who has, of her own volition, taken on the task of trying to find a nutritional approach to managing my pain and other symptoms. But beyond that, she has purchased food, offered emotional support, and been a tough cookie when I’ve needed it. She’s new to the cast, but she’s jumped in with both feet.
  • Winter. When all is lost and I can’t take another moment of life, it is Winter who talks me back into reality. I know I can reach out to him and be brutally honest with what’s going on inside my head, and he will lovingly listen and deconstruct, reframe and commiserate. And if nothing else, he’ll engage me in bitter gossip about people we love to gossip about, which always seems to make me feel a little better.

I try to do justice by these three (yes, there’s one more, be patient!) by engaging them only when I need, by thanking them and recognizing the work they do and making sure other people know about the work they do, and by offering them whatever I can in energetic or physical barter. I offer Rave shamanic and pastoral care counseling for free, as well as getting her into fun events for free; I talk to Fuego about things Fuego would probably rather keep personal for now, but also school her in Topping techniques that facilitate better relations with her partner; and I do a lot of reciprocal “being there” for Winter.

But there’s no argument from anyone in my life that the brunt of the work falls on my spouse and partner, Ninja. From dealing with all of the health insurance stuff, to making sure I have what I need to get through the days alone, to cuddling with me when I am sad or in pain, to being a boundary between me and the rest of the world when I need it, to headchecking me about waht my doctors tell me, and lots of little things in between, Ninja tries his hardest to be a loving, supportive partner to me. I know this is not what he thought he was getting when he married me, and in some ways I carry a lot of guilt around that. But he has never, not a moment, made my disability the focus of an argument. If anything he’s been the one asking me to slow down, to move slower, to think harder, before making a decision that may impact my health.

Ninja and I are not in the best place our relationship has ever been. It’s very personal to us, so I’m not going to share details about that. But I will say that even in all of this, in nary a moment has he withdrawn his support of me emotionally or physically. Even in the midst of a heated discussion, he will make sure to fill my CPAP at night and ask me how my pain is. I worry that some of why our relationship isn’t bright and shiny is because Ninja is burned out from being my caretaker.

He’s going to read that and think that this is somehow his fault, so I want to make it as clear as I can : Burnout is not a caretaker’s fault. I get burnout from my Work all the time, and it’s not my client’s fault. Burnout is a normal, human reaction to engaging our minds and our endocrine systems on high gear over a prolonged period of time. If every day is a potential emergency, our bodies try to stay at ALERT status all the time until finally, we reach the wall and fatigue sets in. A computer can only run for so long on a battery until it either has to spend some time in conservation mode or shut down completely.

What’s so difficult for people with chronic illness whose caretakers are also their romantic partners is that we desire to care for them as much, if not more, than they desire to care for us. We feel like we are takers, and our love desperately wants us to be givers as well. But I can’t do for him what he does for me. I can’t give him a weekend where I do all the cooking, take care of all the household chores, where I drive him everywhere and make accommodations for his comfort and well being. I can’t stop being sick and in pain long enough to do all the things my heart yearns to. There are days that I can’t even offer him the decency of a civil conversation, because talking will aggravate my symptoms or because I’m too tired.

There are ways that chronically ill people can care for their caretakers, but it comes with a very standard caretaking catch: the recipient has to accept the care, and see it for what it is, and take advantage of it. For example, I am often encouraging Ninja to spend the weekend away from home without me. Even when I explain to him that this is my attempt to give him “time off” from being my primary caretaker, and that it would mean a lot to me if he did this, and that I think it would do him a world of good, he frequently (if not always) refuses this. He feels his “job” is to be here with me, and even if he went away he’d be worried the whole time and feel guilty if something arose that needed his ministration. I don’t think this is unique to Ninja-as-caretaker, either. I think many caretakers would react the same way.

However, this is my plea, not just to Ninja, but to all people who are primary caretakers for someone who is chronically ill:

Please understand that the deep desire you hold to be there for us, to provide a supportive and loving environment for us free from as much suffering as possible is as strong for us as it is for you. There are very few things we may be able to do in order to fulfill this need the way we fulfill it for you, and so we ask that you be more open to accepting our care in the forms we can give it if at all possible. So if we encourage you to take time off, to pursue things that make you happy outside of our relationship(s) as lovers as well as caretakers, please accept this as you would have us accept a meal carefully prepared to our dietary specifications. See us making the financial sacrifices to allow for this getaway as a rose, carefully picked out and placed in a vase on the dinner tray. Envision us feeling warm and sated while knowing that you are doing something that makes you feel like a whole human being, the way you make us feel when you make sure we are comfortable in our own homes.

I’d love it if people could add suggestions of what chronically ill people can do to provide care for their caretakers in the comments.

Thank you, and you, and you...

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