Life with chronic illness

A funny thing happened yesterday. After I wrote the post about how much I was struggling with answering the call, I posted it to a Facebook group of people who've come together around an online workshop we all took recently - Lisa Congdon's "Become a Working Artist". The first person to respond recommended I read The Artist's Way - the proverbial bible of how to be an artist, as they had been working through it and finding it useful.

Funny thing is I've owned a copy for at least a few years, and though I think I've cracked it open a couple times, I never made it past the intro. Alas, I've often found that when the time is right, the book finally resonates, so I went and pulled it off of my shelf upstairs. Then I sat down, and pressed on through the preamble, and both Introductions (I have the 10th Anniversary edition, so there's an intro before the intro) in full. All the way into the first chapter. 

What do you know - the time was right. From page 5:

Working with this process, I see a certain amount of defiance and giddiness in the first few weeks. This entry stage is followed closely by explosive anger in the course's midsection. The anger is followed by grief, then alternating waves of resistance and hope...

This choppy growth phase is followed by a strong urge to abandon the process and return to life as we know it.

"He who would be what he ought to be must stop being what he is." - Meister Eckhart

I unabashedly love Liz Gilbert. She just did a two part interview with Oprah on Super Soul Sunday, and the first part aired last weekend and is now online for all to see. I highly recommend you watch it. (The second part is coming up this weekend.) This first half is focused around the topic of figuring out what your "quest" in life is, why you're here and how to make it happen.

This part really resonated with me:

Oprah:
Isn't it true though, I knew this for myself, when there came a time for me to leave Baltimore, and everybody around me was saying, "No, there's no way you're gonna succeed." I didn't hear it as much as I felt it - I felt that if I didn't move, from where I was, for whatever I was being called to, here obviously, in Chicago... I felt that if I didn't do it, a part of me would die. I felt that I would just sort of like, not physically die, but that parts of me would sort of shrivel up in some way, and that I would not be emotionally, spiritually, myself. Did you feel that?

I just came across this video of model Melanie Gaydos from the What's Underneath Project.

What an amazing, humanizing, project and video. Usually stuff like this rubs me the wrong way, but this felt different and lacked that exploitative quality (maybe because it's not a project specifically about disabled/chronically ill people?)

I love the way she talks about her body and her life so much - I can relate to her story even though her personal and health experiences are magnified by the severity and visibility of her illness, and the intensity of the history with her family...

I discovered this video by Hank Green (of Vlog Brothers fame) last night, and had to share it here. I used to watch Hank and John Green's videos religiously, back in the Brotherhood 2.0 days (this will all be gibberish to the non-Nerdfighters out there). But then there was just so much stuff on the internet that it became impossible to keep up on everything I wanted to read and watch, so I just catch the odd video here and there... All this to say, somehow I missed this video. 

Last night I was feeling super duper down on myself and life because of how shitty and sick I've been feeling lately, and was reading some internets, and down the internet vortex I went, and I ended up at this video, and sometimes the internet is just wise and leads you to exactly what you need in that very moment. I hope you'll watch it, because I relate a ton to what he says.

I've been biting my tongue on this for so long... I know how some of it is going to sound. No, really, I know. People just don't say these things, or maybe they don't think about them or realize at all. It's very real though. There is a hierarchy of illness, and it leads to massive inequality among people who are sick. It leads to unthinkable hardship for those who have the "wrong" kind of illness. It's like some form of sickness-ism (discrimination of sick people based on exactly which type of illness they have).

My friend Stephanie summed up life with ongoing illness so well:

"It's very upsetting to wake up day after day with hopes and plans and dreams and be completely unable to do any of them."

I quoted what she'd written on Facebook, followed by my own addition:

I often think about how lucky most people are to just be able to do what they want without such immense and non-negotiable restrictions. I don't think I even remember what that's like anymore.

That I can usually cope with. What's hard to cope with, what makes me really sad, is how people who haven't been through this can't understand it. They still believe somehow it's a choice. That if I really wanted to, I could just do things. That the barriers are only psychological (and I don't mean mental illness, I mean lack of will or motivation).

I will never be able to understand how anyone could truly believe that someone, that I, would choose to live like this.

But this problem is a symptom. I've been thinking about why this mentality exists, and that's my conclusion - it's a symptom... of the hierarchy of illness.

Last week, I wrote this long blathery post about navigating friendship with chronic illness. Then I sat on it for several days. I'm still sitting on it. Something about it didn't quite feel right...

Friendships, or really any relationships, and how they last or don't doesn't actually have much to do with whether you're chronically ill or not. Chronic illness is just one among the many things that can make or break any close relationships - things like going through a breakup, a divorce, a death in the family, a major career change, financial woes, the birth of a child... Anything that shakes you out of your routine and your comfort zone, and pushes you into the unknown, into grief and loss, or the new and unfamiliar. Anything that makes your life afterwards somewhat (or very) unrecognizable.

I've lost a LOT of friends over the past five years. If I started listing them all, I might have a full on self-hate and shame meltdown. ("It must be me!!!!" "What will people think????") It'd be like having a scarlet letter on my sweater - except F for Failed Friend.

The thing is - it is me, not them. Yes, me. My unwillingness to be taken advantage of. My unwillingness for a relationship to be completely on another person's terms. My failing tolerance of my kindness being taken for granted. My finally standing up for myself, and learning that I am worthy enough not to go chasing and pandering after people who don't really care about me the way I deserve.

It's been a while now since I've come out of denial about my illness. I've had some time to at least begin to grieve the losses that have come with it. Friends, family, future plans, hobbies... my loss list is long and detailed. I have also been able to receive some gifts from my illness - it's not all loss. But the gifts don't make the loss any less real, any less difficult.

One of the bigger things I've lost is my ability to be gainfully employed. I haven't been able to work even part time in over two years. All the shame, judgment, and social implications aside, there is something that feels degrading about having my daily purpose and to an extent, my financial independence stripped away. These have probably been the hardest for me to adapt to. And yet, adapt I must and I will!

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Me, at peace, making art in my home studio, 2013
I want to maintain this elusive calm in my work life

Update March 2015: Strange twist... I finally saw my (old) immunologist who I trust very much, and without getting into all the details, it turns out that the "allergist" who did the test that led to my supposedly being glycerin sensitive wasn't actually a certified allergist at all. The test that was done was not standard and the reaction was simple skin irritation (not an allergic response). After about 10 months of avoidance, I've started using glycerin-containing products again with no problems.

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Delving into the waaaaaay obscure health topics here folks, this probably won't interest most of you. But some of my most obscure and specific health posts are the most viewed ones on here by a long shot, so I know that people are looking for this info. I wished so much that I had access to a post like this, so I spent some time writing it up for whoever is next to be in this sticky situation.

A while back, I attempted to get some allergy testing done, and came out of it not even having had the tests done, and instead labeled with a glycerin sensitivity. I'm going to save all the sordid details of this, maybe for some other time (I still have to go through some further investigations to figure out what's going on), but the long and short of it is that since then I've had to remove glycerin containing products from my life as much as possible. (The only things I haven't found replacements for and am still using are quite ironically my antihistamine pills, Reactine, and cortisone cream. There is a "Cortate ointment" petroleum based alternative, but I don't find it works as well.)

You would not believe how many personal care products, soaps, and medications have glycerin in them, it's RIDICULOUS. Not exagerating, probably 99% or more. It's safe to say I have been slathering myself in copious amounts of glycerin for most of my life - which is hopefully a good sign that my sensitivity isn't terribly severe, but it may have been impacting the overall burden on my body. It's extremely hard to find products that don't have it, and it's not only inconvenient but incredibly expensive, suddenly having to replace everything you own with more obscure and pricier products.

Limits. We don't like them. We don't want to be told by anyone - not even ourselves - what we can or can't do. That each of us will eventually hit a wall at some point.

While working on my previous post on illness and beauty/body image, I had several conversations with different friends, and one of the topics that people kept really honing in on was denial. An email exchange with a friend turned into a long rant on my part, and I thought it was worth sharing, so I've fleshed it out into this post - I feel like it's a very important awareness to develop.

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~ Let your loss set you free Heartgirl by Ariane K ~

Health is not binary. People who are chronically and/or mentally ill may indeed be "sick" (a term with a huge amount of complexity in its own right), but we are not on any given day A) sick or B) not sick. These conditions can be lifelong or last many years, going through flares and remissions. But we are not just "sick", we are people with hobbies, partners, friends, and if possible, jobs. Our illness(es) may feel all encompassing at times, but they are not us. They are only a part of us - people who are just as complex and nuanced as any. And yet, it seems at times that there are absurd standards, perceptions, and expectations about what someone who is "sick" looks like. This only exacerbates our already complicated relationships with our bodies.

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