Cancer vs Chronic Illness

As of two weeks ago, I officially have cancer: basal skin cell carcinoma, arguably the easiest, lowest-impact, most curable cancer there is.

The experience of the last two weeks and my debut into cancer-land has been, uh, interesting from my vantage point as a long term chronic babe/ sick chick/spoonie.

Some insights into my surreal existence these days...

1.) It is fascinating, FASCINATING, having an illness that is not socially taboo. Whaaaat? I can talk about this like it's no big thang? Yes, yes, I can. No one gets squeamish or quickly changes the topic. Wow.

2.) But of course, people do seem to think it is at least kind of a big thing, and something that they ought to acknowledge when they see or talk to me. "So sorry to hear....!" "But you're so...." "It's just not..." Dude. Why have you never given a damn that I have spent the last 15 years of my life battling illness after illness after illness, all of which greatly affected my ability to function, and yet now that I have a growth that doesn't impact my quality of life at all I am now worthy of sympathy?

3.) Well of course because cancer can kill people. And to that I say, oh honey, my mortality is not news. It's the only thing on this planet that is not news. I will die and so you will you. And yet...cancer...! [Insert sucking in of breath, tears, clucking, soft nodding, blah blah etc etc...] The association with death gets the reaction, whereas I cannot pay people to give a damn about chronic pain.

4.) To wit: I will get to spend my birthday with my husband this year because that's the day my surgery is, and when you tell your boss "I have to drive my wife to surgery to get her cancer removed" you get the day off. You never get the day off because your wife has a chronic pain disorder. Just sayin'.

5.) Back to 3 - cancer can kill people. Yes, it can, but basal skin cell carcinoma pretty much never does. It seems almost unfair to call it cancer. Many people in my life have had what I am now referring to as "real cancer." Ya know, chemo, surgical removal of body parts, surgical mending of said body, weight loss, hair loss, radiation, deep suffering? Basal skin cell carcinoma is like being at the cancer dinner and sitting at the kids table. It's the junior club. Cancer-lite. Diet cancer. This is not real fuckin' cancer, people. If you wish to care for me in my time of suffering, then by all means direct your care to my many other debilitating issues.

6.) Oddly enough, cancer, for me, is the easiest health problem I have ever dealt with. (Back to 5 - of course this isn't "real cancer," but it is my experience of what is technically cancer.) Get this - they just cut the cancer off and it's gone! AMAZEBALLS. I wish one day of outpatient surgery was all it took to get rid of v pain, SI joint pain, an effed-up left shoulder, bum wrists, a non-functioning left knee, acne, period cramps, infertility, scoliosis, migraines....

7.) Despite the fact that this is the easiest health problem to deal with, it's the one for which there is the most support! WTF! So easy to get the names of good surgeons, hear about other people's experiences, learn what to expect, etc etc etc. Where was all this support when I really needed it???? Eyeballs popping out with frustration!!!!

8.) "But you take such good care of yourself!" I KNOW, DAMMIT. A lifetime of daily sunblock, hat wearing, and sitting in the shade did not prevent me from getting stupid skin cancer young. Neither did eating my vegetables, exercising, meditating, praying, or trying to live a good upstanding life. Because as I learn and constantly re-learn, life on Planet Earth has nothing to do with fairness. Not a thing. Zip, zero, zilch. Fairness is a stupid concept we teach children, who then think it should be there to support them when times get rough, but surprise, it never does. We need to amend "Life isn't fair," and add on "nor does fairness have anything to do with anything, really." So let it go. 

9.) I suppose because the carcinoma is on my face, I was referred to a surgeon whose practice also involves a lot of elective cosmetic work. (Or maybe not. It seems like many Mohs surgeons also practice cosmetic dermatology.) Understandable. Hilariously enough though, this means I get the same treatment as all the other posh people at the doctor for their expensive elective work. The waiting room is really nice and has high-quality chocolate and beverages out. The receptionist gave me a "welcome gift" for becoming a new patient. Upon receiving the beribboned box, I snarkily replied "Who knew cancer would be so much fun!" By the look on her face, she was not used to getting that comment. (In case you were wondering, my gift was a water bottle, chapstick with sunscreen, and hand sanitizer - all branded of course - packed in shreds of silvery mylar stuff.)

10.) Silver lining (in addition to getting to spend b-day with hubby) - insurance is paying to take this ugly thing off my face. Sweet! I've lived with it for years, thinking it was a scar that hadn't healed properly, and was super-irritated that it was so unsightly. But it's not a scar! It's cancer! So having cancer is like getting insurance to pay for elective cosmetic surgery to make me prettier! Cancer = I'm prettier! I can't believe I'm writing that. 

Can you see why my world is feeling so surreal these days?

Ugh.

Anyway. Yes. I never would have thought as a child that in adulthood cancer would be the easy thing to deal with, or that it would make me prettier, or that other health issues would actually be the hard ones, and yet that is my weird, weird, reality these days.

And if anyone tries to brush off your complaints regarding v pain, you can now tell them "This is harder than cancer!" Because, for one person at least, that is true.

* * *

PS Did this post get your brain gears crankin'?

Feel free to start a conversation below (it's okay, you can be anonymous)!

From “Hot Mess" to Sacred Messenger

Although in our culture we perceive illness as an event happening to an individual, it is no secret that illnesses are indicative not only of an individual but a community out of balance.

For instance, we blame individuals for being overweight, chalking it up to a lack of willpower, even though we know that the culture around the production and eating of food in this country does not support human (or environmental) health. Easier to blame the individual for their lack of vitality, though, rather than take on the web of political, industrial, financial, and cultural forces that create the environment in which eating well takes an awful lot of swimming upstream.

And so it is with v health.

I am sitting here today having recently experienced another bout of v pain, and currently experiencing miserable menstrual cramps, among other things. 

It has not escaped my notice that as a child I wanted so much to be a boy - the status of girls and women as second-class citizens was obvious to me at a very young age - and then grew up to experience a rather full gamut of health problems directly affecting my female parts (menstrual pain, v pain, etc) as well as illnesses that in our society affect women at higher rates (depression, anorexia, and chronic pain of all kinds.)

There is an awareness, however nascent, that to take on the nation's diabetes and obesity problems we will need to change our food and exercise culture; Michelle Obama and the White House vegetable garden being a well-known example. 

But where is the awareness that the epidemic of health problems affecting female parts and female bodies also indicate a disturbing imbalance that needs to be addressed as a group? Breast cancer, PCOS, dysmenorrhea, fertility challenges, v pain, painful sex, endometriosis, post-partum incontinence, eating disorders, anxiety, burnout, depression...our female bodies are suffering so intensely and yet there is no movement or consciousness that these are anything but individual problems.

(Hell, in some cases there isn't even an idea that these symptoms are actually problems - post-partum incontinence and menstrual cramps are often assumed to be "just part of being a woman." Bulls**t. They may be common, but they aren't normal or healthy.)

My health problems are mine and I am the one in charge of addressing them, but they are also potent signs of cultural disease. I do not think that I would have half the health problems I have suffered from had I been born on a planet that values women, girls, and the feminine in all of us. At the very least, had these health problems still manifested, I would have had a hell of a lot more support in overcoming them. In a world in which the female is valued, it is researched and nourished and cared for, not hidden away under layers of fear and shame.

I write this in solidarity with others who suffer as I do, and to remind my sisters that your v pain or menstrual pain or PCOS or fertility challenges or whatever isn't just YOUR problem, it's OUR problem. Our bodies are reflecting back to us the illness of our cultures and societies, a set of values improperly prioritized.

Is it fair that you get the brunt of this suffering? No. 

I would not wish this suffering upon anyone, least of all myself. And yet I acknowledge that I have power in this situation too, a role to play in the larger ecosystem. I can sit back and suffer silently and nothing will change, for me or anyone else, OR I can recognize my role as cultural barometer and make my story public, so that my people and community can see what is happening and be given the opportunity to make change.

When studying ecology, amphibians are viewed as being excellent indicators of the health of their ecosystems. Why? They are sensitive. Watch them and they will alert you to all kinds of problems before said problems are big enough to harm others. The amphibians' vulnerability serves to protect.

Yes, vulnerability is a source of strength and power.

Toughen up the toads and you lose that early warning.

I think we ought to hold a special place in our society for amphibians, literal and metaphorical. Take care of them and you take care of everyone. Protect them and you protect everyone. Neglect them at your peril, as then all will suffer.

* * *

For so many years I have wrestled with the frustration of being chronically ill. Considering my experience from an individual standpoint, I battled the feelings of "less than" over and over again.

But when I step back and see the whole ecosystem, I realize that I am not "less than" at all. Holy crap, not in the slightest. My job is to embrace, care for, and cherish my sensitive, sweet, female body, and alert the rest of the tribe to the damage they are doing. 

Ultimately, whether they heed my warnings or not is their choice; my job is to run my own life, not everyone else's. But my personal transformation from victim to messenger is healing in and of itself. 

Re-casting my role from "hot mess" to sacred messenger has been liberating. It gives me a much stronger platform upon which to stand. It is a lot easier to push this work forward when I view my experience as a strength rather than a liability, and see sharing it as a service to my people.

So the next time you are sitting in your pity puddle, feeling sorry for yourself and (righteously) angry at the world, ask - is this really only about you? Or are you in Toad Mode, reflecting back society's ills?

Even if you are not ready to shout your v pain story from the rooftops, acknowledging your place in a wider context can help you not take your v pain so personally. It can help to derail the "I am broken" thought train. And derailing the "I am broken" thought train is half the battle.

So try on your new toad skin and see how it fits. Hop on in, the water's fine...

Ribbit.

* * *

PS Did this post get your brain gears crankin'?

Feel free to start a conversation below (it's okay, you can be anonymous)!

Sweden = Awesome

Amazeballs!

I stumbled across this article the other day in the Women section of the Huffington Post. Apparently a sex ed group in Sweden decided to do something about the fact that there is no Swedish word for female masturbation, held a nationwide competition, and recently revealed the winner: "klittra," a combination of the Swedish words for clitoris (klitoris) and glitter (glittra.)

From their spokesperson Kristina Ljungros:

"If we don't have a word in the language, how can we even talk about it?"

Well said, my dear, well said.

The sponsoring organization, the Swedish Association for Sexuality Education, is currently lobbying to get klittra added to the official Swedish dictionary. It's not their first time playing with language - in 2010 they translated a Swedish pamphlet combating misinformation about virginity and the hymen, instead using their newly coined English phrase "vaginal corona." 

I'd love to see a national competition to create new English words not only for female masturbation, but also for female anatomy and experiences, words that celebrate sexuality, the body, and the feminine. Anyone else? Adding it to my to do list...

“I know someone who had that."

For many years after my diagnosis, I didn't speak of my v pain to anyone other than a few close friends and my sweetheart. But when I started teaching yoga a few years ago, I wanted to be honest about what drew me to the practice. In the yoga world people often chit-chat about what brought them to the mat, and while I didn't want to be detailed in my honesty, I didn't want to lie, either.

At first I would say that I came to yoga because of a variety of chronic illnesses, but apparently that was too vague as people would always press for more. If I mentioned the pain disorder, the person conversing with me would then say "Oh, fibromyalgia?" (always fibromyalgia) at which point I would reply that no, it wasn't. Pause. Unwilling to say "vulvar pain" or explain the term "vulvodynia," I would simply say "I have a pelvic pain disorder."

At the mention of the word "pelvic" men would get uncomfortable and quickly remove themselves from the conversation, and sometimes that would happen with women too. But often - if it was a woman - she would lower her voice and say:

"I know someone who had that."

Had WHAT? Do you recall that the pelvis includes many different organs and body parts, any of which could experience pain? Some would leave the conversation at that, but often she'd talk about how horrible it had been for this person she knew. I'd try to look sympathetic and nod, having no idea if we were talking about endometriosis, interstitial cystitis, lichen sclerosis, vulvodynia, or something I'd never heard of. 

I can't pin this peculiarity to the yoga world either, as over the years these conversations took place in other contexts as well.

In all of these these situations I clearly had boundaries about how detailed I was willing to be about my health history, so I have never thought it fair to call anyone out and actually ask them what they meant. But it never ceases to amaze me how many women out there will go on about something - furtively - when it is not clear if both people are discussing the same thing.

Like last week's post, these veiled conversations have highlighted the fact that we won't make any progress without first learning how to communicate about the pelvis.

The other odd thing is that the phrase is always the same - I know someone who had that. Let's break it apart, shall we?

1.) Part One: "I know someone..." No one has ever admitted me to me right then and there that they themselves struggle with chronic pelvic pain. The closest I've gotten to that is a woman who said she would like to meet with me to talk more about this topic - we did meet, and in that safe space she did say that she had been having some struggles and asked me about my experience.

I'm not sure if women are simply more willing to discuss something sensitive with the safety of distance, while women struggling with these health issues themselves remain silent. Or perhaps "I know someone" sometimes means "I know someone - me?" I think usually the situation is the former, but I have sometimes wondered.

2.) Part Two: "...who had..."  For some reason, this person my conversation partner knows is apparently beyond her pelvic pain - it's in the past. Again, is it because sensitive topics are easier to discuss with distance, not only in terms of who it is happening to, but at what point in time? 

Statistically, it seems very unlikely to me that ONLY women who know women who had "that" in the past should ever meet me, and never the women suffering themselves, or the friends of women suffering currently.

Or is that some of these sufferers are still struggling, but its just easier for the friend to communicate about if she pretends its in the past? Maybe my conversation partners don't want to stigmatize their friends, even anonymously, by advertising her "broken" lady parts? Or is that the friend heard about it in the past and is assuming the sufferer has recovered, when in fact perhaps the sufferer has just not talked about it for a while? Given how persistent many pelvic pain disorders are, and the lack of good treatment options for many of them, I find it hard to believe that 100% of the cases women tell me about are neatly and tidily taken care of and in the past permanently.

3.) Part Three: "...that." Ah yes, "that." Which again means what??? When it comes to pelvic pain, intelligent and otherwise articulate women are reduced to communicating via pronouns without bothering to specify what that pronoun is referring to. 

No one has ever said to me "I know someone who is struggling with a pelvic pain disorder as well." No, no, this person always had "that" as if "pelvic" as an adjective only described one body part, as opposed to a region of the body with many different parts and functions contained within it.

* * *

These conversations have been very educational, in that I have learned women do not have the tools to talk articulately about issues of the pelvis.

Also frustrating, in that they don't really come to anything. The woman I am speaking with generally tells me quickly how horrible it was for her friend, warmly wishes me good luck, and then runs for the door. 

As I write this, I think I need to re-think my policy of responding with sympathetic nods. How can I shift the conversation while still keeping my conversation partner feeling safe enough to continue the discussion?

"Oh, I'm sorry to hear that someone you know is suffering - we may not have the same issue, however, as there are dozens of pelvic pain disorders affecting all of the different systems in the pelvis. I'm always looking for resources for my own health as well as to refer to others, so I would love to get your contact information - would you be comfortable asking your friend if she would be willing to talk to me and exchange resources?"

or perhaps

"You know, it's funny, I get that response a lot even though there are dozens of different pelvic pain disorders. Many women suffer from one or more of them, so I am always looking for more resources for myself and others - do you think your friend would be willing to talk with me? Maybe she and I can help each other out."

The next time this situation arises I will try and remember to use one of these responses instead. It would be great to be able to build on these points of contact - get a referral, meet someone new, whatever. Maybe by providing a woman with an experience of an articulate but still discreet and respectful conversation, she will have an easier time talking about pelvic pain in the future.

I'll let you know how it goes. In the meanwhile, does this happen to anyone else?

Imagine a Culture of Healing

About healing v pain and chronic illness in general: shouldn't the process of getting better, in and of itself, actually make you feel better?

This is not a new thought for me, as many times over the years I have noticed how "getting better," at least in modern America, can often feel anything but.  Some days "health" seems like an elusive prize, available only on the other side of a daunting journey through a harrowing gauntlet. 

Dealing with doctors, wrangling with insurance or suffering the lack thereof, dead ends, failed treatments, and the never-ending list of implementing, tweaking, and maintaining lifestyle changes (better sleep! healthier food! learn how to meditate!) feel like a second job.

Do other cultures make their sick people go through all this? Is this common? I don't know. Logically it seems like if someone was unwell, you would try to make things easier for them, right? 

But here we don't. Here we send them to the gauntlet. To be fair, some of this crazy gauntlet-running can pay off.

Eating healthfully takes effort: planning, shopping, cooking - but most people do feel better eating fruits and veggies than a steady diet of chips and soda. Maybe the effort you spent seeing six unhelpful doctors in a row was completely draining, but doctor number seven has some solid advice. So yes, gauntlet-running is not completely without benefit.

But overall, gauntlet-running is an inefficient slog, especially for those of us whose health issues are not well understood or researched. In our already weakened state, we pour effort into getting better and still -- perhaps -- frustratingly -- see very limited results. 

Is it any wonder? We're put through the wringer, and weren't in great shape to begin with. I bet if you took a perfectly healthy person and gave them the to-do list of the average chronically-ill person, they too would end up exhausted and miserable.

Does that mean we are somehow "broken," or "less than?" In the past I have felt so much frustration with my health and aimed it all at myself. Other times at the medical system. But look at where I live -

Modern America, for all of our wealth and resources, is the antithesis of a healing culture.

What I do here as an "ill" person wishing to recover is swim upstream, all day, every day.

* * * 

What if we lived in a society where getting better felt better? What would that look like? What would our lives be like if our culture recognized, "Hey that person is having a tough time, how can we accommodate them?"

Let's pretend...

You are feeling really crummy. This has been going on for a while. So you let your boss know - he or she arranges for a reduced schedule to allow you time to get the help you need, and make the lifestyle changes necessary. You will still get to do rewarding and meaningful work, and be eligible for promotions and pay raises, etc, the only difference is the time required reflects what are you able to give. 

You have guaranteed access to whatever health resources you needed, regardless of income, including a "medical navigator." The medical navigator answer your questions about what approaches are available and how they may help, and directs you to resources. 

Health care practitioners of all stripes are warm and caring, see you as a whole person, and have the time needed to address your queries.

At home, your family/roommates/cats respect this new phase of your life, and together you work out a way for you to contribute to the running of the household in a manner that doesn't compromise your health. 

The community organizations you belong to are similarly flexible, and your friends "get it." 

In short, everyone in your life recognizes the need for change and knows how to go with the flow. As your role in their life changes, they in turn may need to adjust or ask for support as well, and so loving changes and adjustments are made, rippling out from the center. 

When you first started to get sick, you did not panic, because you knew this support existed. You knew because you had already participated in it, having supported others in this ebb and flow ever since you were a little girl.

* * *

Don't you think it would be so much easier and more efficient to get well in that scenario? Don't you think that everyone in that example is better off than with the current state of affairs?

In the medically-wise culture described above, everyone makes adjustments, but everyone also gets supported. The attitude is not "that sick person has to change," but "the entire community around this sick person needs to change, and we can do so in such a way that supports all of us."

Healing in all it's many forms is viewed as an opportunity rather than a problem: at work, at home, everyone looks at the issue and says "Hmmm, how can we make this new reality work for everyone?"

The intern gets a chance to step up. Your co-worker gets to take the lead on some projects. Your friend helps out with cooking happily, because she gets to fine-tune some new recipes she has been testing. Your empty-nester neighbor who misses her grandkids helps out with your children for a few hours a week, and your kids get to hang out with someone new.

In return, you get back on your feet faster.

Instead of becoming a frazzled, drained, sick person (which helps no one), this support enables you to shine your love and talents and goodness onto the world throughout your illness, however long that may last.

And when someone else needs some give and take? You will be in a state to participate in that dance. Even if you are still physically struggling, you will be so firmly rooted in your inherent worth that it would be impossible for you to not have plenty of love to share.

Amidst all this love and creative problem-solving, society flourishes.

* * *

I don't really know where I am going with all of this, other than to highlight challenges and dream up potential solutions...sometimes we don't realize how broken something is until we see an appealing alternative. 

I'm curious - what would your "healing culture" look like?

In the US, our love of independence puts a premium on what we as individuals can change, and as a fan of taking responsibility for yourself, I see the benefit to that. But humans are social animals, and it behooves us to recognize that no harm or good comes in a vacuum; we are all in relationship to each other every minute of every day, and our communities have a profound effect on our health.

So.

Take the focus off "fixing yourself" for a minute, and instead imagine you could change the world around you. Journal it, draw it, sing it, whatever. Make every detail come to life.

What does it look like? What does it feel like?

(and how did creating that reality, even if only in your imagination, change your relationship to yourself and your v pain and your life?)

* * *

I would love to hear your responses. Comment below, email me, whatever. If you wish to share your experience with this query, let me know and you can have a guest post! (You are welcome to remain anonymous or use a nom de plume if you wish.)

PS I am changing my writing schedule - it's now one post a week, on Wednesdays. This is to allow time for all the B-School work I have going on, and to allow time for my own health journey. Cheerio and take care of your wonderful selves!

PPS I spotted this miraculous little flower on the sidewalk in my neighborhood. Anyone know what it is?