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?

April Reflection

I haven't written in what feels like ages, and to tell you the truth, I don't know what to write about. A lot happened in March, twining together my personal, professional, and medical lives, and I am feeling a bit shellshocked. Too much information to digest at once. My brain wants to shut down.

I have been thinking a lot about what it means to heal: "to become sound or whole," or rather, to live through my wholeness. My wholeness is already there, but I have been living alongside it, not in it or through it.

I have been making health decisions based on the belief that something is broken and to get well I need to "fix" it. I am coming to see that I am not broken, and instead in my case healing is the process of aligning oneself with a greater reality.

I recently heard a student of Ayurveda say "Live with Mother Nature, or she will come and live with you." She meant that when we get off track, Mother Nature lets us know by showing up in the form of illness, disease, chaos, imbalance. We do not have the power to do as we wish without consequence. There are greater powers out there, and it behooves us to work with them rather than against them.

Happy April everyone, and I hope the spring is treating you well! (The photo above is from my garden - we had a visitor hiding in the lavender yesterday...)

Is chronic illness good?

This post was inspired by a recent, awesome, thread on ChronicBabe.com, which you can find here. It got tons of comments, and comments on comments, so I highly suggest that you go check it out!

The instigating question: is there any way chronic illness can be viewed as a good thing?

My two cents:

1. Chronic illness = Bad. 

2. Response to it = your choice.

Over my years of sickdom, I started out thinking "Chronic illness is evil." Then when I saw all of the positive changes in my life I made due to illness, I thought "Gee, I guess chronic illness is a blessing in disguise."

I ended up in this most recent paradigm when I realized that there is a difference between chronic illness and the response to it. 

All of the infinite "blessings of chronic illness” came from me: my decisions, my actions, my changes. The illness itself has never-ever-ever produced the tiniest bit of goodness.

When I used to say "Chronic illness has destroyed my life," I disempowered myself. By remaining in resistance, I left myself a victim with no hope.

When I used to say "Chronic illness has made my life better," I again disempowered myself. By attributing the positive change to the wrong source, I glorified suffering (bad idea!) and failed to recognize my own strength, power, and love.

Now I say ”I have responded to chronic illness in a way that has brought me many, many blessings,” and so I empower myself. Not only do I recognize all the work that it has taken to get this far, I recognize that no matter what life throws at me I can again respond in a way that benefits me. 

Is my life better due to chronic illness? Hell no. 

Is my life better due to my response to chronic illness? Hell yes. 

The famous saying does not go

“When life hands you lemons, be grateful, because they will magically become lemonade.” 

Nope, that lemonade ain’t gonna make itself. And so we say:

“When life hands you lemons, MAKE lemonade.”

Whether you choose to or not - is entirely up to you.

Flare Update, Part 3 of 3

For Part 1 of this mini-series go here, and you can find Part 2 here.

* * *

Last Thursday I had my neurology appointment, a follow-up as part of the latest flare. I didn't have much to report. As far as I could tell all of my significant improvement was due to the topical estradiol prescribed by my gynecologist, and while the neurologist's new pain meds weren't as effective as the last, I really appreciated that the new prescription didn't come with any side effects (for me, anyway.)

Even though I was mostly without vulvar pain, I could tell the new meds weren't as effective because some old symptoms - which I didn't realize were connected to my pelvic pain until the drugs I started taking got rid of them - came back. The big one was provoked temple pain. This generally didn't bother me until I put on my glasses, at which point the pain started, and if I kept the glasses on, would increase until it became a monstrous headache. 

Needless to say, this symptom of my central sensitization leads me to wearing my contacts more than is healthy. My eyeballs miss my glasses. Now that we are in an overcast Bay Area winter, I am handling it okay, but when the bright sunny days return my choice will be between getting tension headaches from squinting into the sun or temple headaches from wearing sunglasses. And those headaches are worse without the more effective drugs. Boo.

The good news is that should I decide to go back to the more effective meds, my doctor has a few ways of handling the most aggravating side effect, as many of his patients on that medication experience the same thing. He apologized for not suggesting it sooner, as he didn't realize how much it was bothering me. (Argh! Note to self, speak up!)

This particular doctor is friendly and quite chatty, so when I gave him my PT update he mentioned that he had a lot of patients come to him because their PT had failed. He of course didn't have any data on what percentage those failed cases made of the total, and freely admitted that muscular anatomy was not his forté, but repeatedly seeing these frustrated patients made him question PT's effectiveness.

I was happy to share with him my own experience: PT was an immense help on a number of levels, and completely worth my while, even if it didn't solve everything. He then asked me to get one of my PT's cards so he could refer patients to her.

This exchange was a reminder to me of life from the physician's eyes: they practice in their own office, and often when they are networking or out at conferences they are with other doctors in the same field. Jack of all trade, master of none: when you find the masters in Western medicine, which for better and for worse separates the body and thus disease into its parts, these masters often don't have a clue as to how other therapies work or why they would be effective.

This story also illustrates how patients can act as messengers between the specialists: by speaking up and letting our doctors know what else is and is not working for us, we can help them serve all of their patients better.

* * *

So that's the news from flare-up land. I'll keep up with the estradiol and PT exercises and see what happens...

The New Year's Resolution I Kept

Hello, lovelies and a Happy New Year to you.

It's January, the time when shelter mags feature articles about home organization and "freshening up with color," when gyms enroll the most new members, and when the media earnestly discuss resolutions in a flurry of hope tempered with the experience of hindsight: the standard pieces about what to resolve and how to do so are alongside articles and news clips warning you that by February most of these new resolutions will be toast.

La dee dah.

In all my 32 years on this planet I have rarely made New Year's resolutions and only ever kept one of them, back in 2008: to get a massage every month. It is a resolution I still keep six years later. 

This came about because during the prior year I had spent much of my time in physical therapy due to three painful problems: severe wrist tendonitis, pain in my right foot, and yes, vulvo-freakin'-dynia.

The three different specialists I saw kept saying the same thing: that my pain was due at least in part to severe chronic muscle tension. What the hey? I remembered adults telling me as early as the 6th grade "Oh honey, you are so tense," but it had never occurred to me that there would be any further repercussions, that my muscles would start pulling tighter and tighter until it hurt to raise a glass, walk, or sit.

I had only received a couple of professional massages at that point in my life, but I had loved them. They were a splurge, an expensive luxury to be enjoyed only on the rarest of occasions, but after all the time and money I had spent on physical therapy this delicious treat no longer seemed particularly expensive or optional.

So, my project began, continuing through a cross-country move and tight financial times. I initially thought massage would loosen up my muscles, with the goal of pain prevention, and that in order to achieve this the massage therapist would "fix" me, a passive recipient. All I had to do was show up.

Instead the process was entirely different, with me an active agent and the results spilling off the table and into my life. 

I learned how to feel my own body. My newfound physical awareness allowed me to make better decisions: to move and be still differently, to feel pain or discomfort and respond appropriately. I learned which parts of my body seemingly always held tension but also noticed sensations that would come and go.

The physical awareness soon led to emotional awareness. Positions such as clenched jaws or a held abdomen didn't come out of nowhere: my body was responding to what was going on in my head and my heart.

Regular massage taught me that how I handled my physicality and my emotions greatly influenced what happened in my body. Not only that, it was a two-way street: by intentionally relaxing an affected body part, I could loosen the hold of a vexing emotional state. 

Massage became so important to me that I had to share it with others: I worked as a massage therapist for two years.

* * *

In the early days of this project I rationalized my monthly massages as a responsible medical decision, but long ago dropped that Puritanical stance.

I now embrace the fact that all of these mind-body benefits flow from the intentional pursuit of pleasure. By "pursuit" I mean "an activity of a specified kind," as opposed to the act of going after an as-yet-unreached goal. My pursuit of pleasure is very much in the here and now, a practice, not something out on the horizon.

The hobby of pleasure is an essential part of healing: if you don't feel good, and don't know how to make yourself feel good, then how will you reach that state without experimentation and many hours of practice?

This is obvious once you look at it, but I rarely meet another person who thinks the same. 

I continue my monthly massages to this day, and have the next three sessions already booked. They are mentally pencilled in for the next seven decades.

* * *

I don't have a dramatic New Year's resolution for 2015, but I have spent considerable time over the past week tying up loose ends, focusing my desires for the coming year, and creating more support and structure around them with the intention of their fulfillment.

I am taking stock of my strengths and for the first time in my adult life I have a pretty good idea of what I will be doing twelve months from now. 

My New Year's reflection has thus not produced a proclamation so much as an acknowledgement of a series of shifts, and the decision to engage with them fully.

We are neither passive recipients nor all-powerful lords in any area of our lives: making change is a dance, a back and forth between our inner and outer worlds: