When the people in our inner circle don’t understand our suffering, we may feel isolated, frustrated, misunderstood, and painfully, acutely alone as a result. Since we’re all friends here, I’ll just put it frankly: It stinks.

I recently spent some time with a friend who has fibromyalgia, a chronic illness that causes long-term, widespread pain and tenderness throughout the body. She works a full-time corporate job during the week, and on the weekends she works with her husband in their jointly owned photography studio. She was burnt out, stressed, exhausted, symptomatic, and, as she put it, “at the end of her rope.”

But when she tells her husband she needs the weekends to relax and unwind and take care of herself, he accuses her of not being supportive of him and their business. He looks at her, and from the outside, she appears to be fine. She’s not sneezing. She’s not coughing. She’s not profusely sweating. She’s not fainting. She’s not limping. She looks fine.

But she’s not fine. And she needs him to understand. But he doesn’t understand.

Compassion is the Solution

This is just one specific scenario but it illustrates a common conundrum for people living with chronic illness. However, in order for us to communicate our frustration and isolation in a healthy, productive manner, it’s important that we first have compassion for the perspective of the people close to us.

In my friend’s case, her husband has been healthy his entire life, with the exception of a minor cold once every few years. He has had no firsthand experience of living in a body that doesn’t work the way he wants it to. He’s very fortunate. And for this, she needs to have compassion. Yes, compassion.

Of course, you might be saying, “Oh, poor healthy guy! Yeah, I really feel for ya buddy! Geez! As if!” I am reminded of a time in my last relationship when my boyfriend had gotten sick with a stomach virus. He lied in bed for days, watching movies and moping and feeling sorry for himself. I struggled to find my compassion, but all that kept coming up instead was, “Look at you, falling apart with a little stomach virus, you big baby!”

But if we want to be understood, we have to be willing to understand others too. It’s not my friend’s husband’s fault that he hasn’t had the experience of ill health, and therefore it’s not his fault that he has trouble relating to his wife’s struggle and intuiting what she needs.

Engage in Loving Communication

When we focus on compassion, it allows us to put down our feelings of being offended and hurt. It lets us realize the folly of righteously declaring that the other person should get it, and instead it frees us up to focus on communicating clearly and lovingly.

My friend kept saying things like, “I just need him to understand that I’m not feeling well.” But since he couldn’t understand, they were stuck, and frustration was mounting on both sides, creating a serious fissure in their marriage.

I suggested that instead of trying to get him to understand how she feels, it might be more useful to tell him clearly and lovingly what she needs him to do. He may not understand, “I have pain all over my body,” or “I”m too tired to do anything, even though I just got up an hour ago,” but he could understand, “I am unable to work on Saturdays anymore and I need you to find someone else to replace me.”

This is a clear directive. He can work with that. But most importantly, in order for this type of dialogue to occur, it first requires her to take responsibility for identifying what she needs and clearly communicating it, without drama, accusation, or defensiveness.

The Food Poisoning Revelation

Before I was diagnosed with MS, I went through a period of several years after college where I was bedridden for months at a time, a slave to my fatigue and not knowing the cause. My best friend at the time often got angry with me for making and then breaking plans. I tried to explain it to her, but I could barely explain it to myself. I didn’t know what was happening with me.

It reached a climax one day when she was performing in a play in the city and I wasn’t able to go because I was sick. What was this mysterious sickness I kept complaining about, anyway?! I didn’t even have a name for it! She raged at me, at what she thought was my insensitivity and selfishness and laziness. We didn’t speak for months.

Then one day she called me, humbled, apologizing profusely. She had gotten food poisoning from a falafel sandwich she had purchased from a street vendor in the city and she had just spent several days puking and so fatigued she couldn’t get out of bed. She said, “Oh my gosh, Karen, is this what you go through? Is this what it’s like for you?” She said, “I felt so awful these last few days! I get it now. I’m so sorry I didn’t understand.”

Sometimes the only way we can truly understand another’s suffering is when we experience something similar. And even then, everyone’s suffering is different, everyone’s pain is relative.

My friend’s realization made me feel understood and loved by her in a way I never had, and it did heal the wound that had developed between us as a result. But this can’t always be the case, and we certainly don’t wish MS or any other illness on the people we love.

So What Do We Do?

Short of giving all our loved ones food poisoning and hoping they have a revelation, what can we do? The answer is we can have compassion for their experience. We can notice if we feel resentful toward them because they don’t have the same struggles. We can notice if we resent their lack of understanding. And then we can feel compassion for them, for our own pain and isolation, and for the entirety of our very human situation.

And finally, we can ask ourselves what we need and communicate clearly and lovingly how we’d like them to support us. And thank them lovingly and sincerely when they do.

I click once and it thinks I clicked twice, opening files and programs I am not intending to open. I try to move my cursor to a word and instead it highlights entire portions of text. Sometimes I click and instead of the wrong thing happening, nothing happens. I click again and again, still nothing. Rage!!!

Then sometimes the pointer randomly disappears from the screen, filling me with unexpected existential terror;  my mouse is plugged into my keyboard, yet it has seemingly ceased to exist!

My Mouse is Me. My Mouse is You.

A new computer mouse is cheap. Under $20 for a basic model. So you might be wondering why I’d be torturing myself with one that is clearly broken? Well, it’s because my mouse is me. My mouse is you. My mouse is anyone living with an illness, anyone living with the maddening frustration of a body that does not do what they tell it to do.

I know I could just go out and buy a new one, but I am stopped by something potent and persistent inside me that says, Wait. Be still. Look. You have something to learn here.

Sometimes, the frustration with my own faulty body can be so intense that all I can feel is the rage. But with the mouse, because it is outside of me, because there is some distance between me and it, I feel a surprising compassion for it too. It did not ask to be broken. It is doing the best it can. It is struggling just to carry on, like all of us.

I zoom out and hover above myself, a witness to my wild and unpredictable fluctuation between compassion and rage. Between love and the withholding of love, which can also be simply called judgment.

Love What is Broken

I know I can purchase a new mouse. But I can’t purchase a new body. So maybe the value and the gift here is to learn how to love even my broken mouse. To love even my rage for my broken mouse. To love my left eye, even when it won’t focus properly. To love my left leg even when it is numb and my hands even when they tingle and my body even when I cannot peel it off the bed.

As the wise Pema Chodron writes, “If we want there to be peace in the world, we have to be brave enough to soften what is rigid in our hearts, to find the soft spot and stay with it. We have to have that kind of courage and take that kind of responsibility. That’s the true practice of peace.”

Where is the soft spot in your heart where you can love even what is broken in you?

Today, let’s practice that. I know that I need to practice it, because just writing these words brings tears to my eyes. Can I say “Enough!” to my inner tyrant, to what is rigid in my heart, and choose, instead, the soft spot?

Can you?

I read about this magical island in a New York Times article this week. Of course, the million dollar question is: How do they do it?

The article’s author, Dan Buettner, attributes it to a combination of four crucial factors: culture, belonging, purpose, and religion. He writes:

“If you pay careful attention to the way Ikarians have lived their lives, it appears that a dozen subtly powerful, mutually enhancing and pervasive factors are at work. It’s easy to get enough rest if no one else wakes up early and the village goes dead during afternoon naptime. It helps that the cheapest, most accessible foods are also the most healthful — and that your ancestors have spent centuries developing ways to make them taste good.

It’s hard to get through the day in Ikaria without walking up 20 hills. You’re not likely to ever feel the existential pain of not belonging or even the simple stress of arriving late. Your community makes sure you’ll always have something to eat, but peer pressure will get you to contribute something too. You’re going to grow a garden, because that’s what your parents did, and that’s what your neighbors are doing. You’re less likely to be a victim of crime because everyone at once is a busybody and feels as if he’s being watched.

At day’s end, you’ll share a cup of the seasonal herbal tea with your neighbor because that’s what he’s serving. Several glasses of wine may follow the tea, but you’ll drink them in the company of good friends. On Sunday, you’ll attend church, and you’ll fast before Orthodox feast days. Even if you’re antisocial, you’ll never be entirely alone. Your neighbors will cajole you out of your house for the village festival to eat your portion of goat meat.”

The Reason for Which You Wake Up in the Morning

Maybe it was the timing and the circumstances of reading this article that made it so very poignant for me – it was shared with me by a longtime, dear friend of mine in New York City, where I was visiting this past week. I was in town to photograph a wedding, and with the exception of the hours I was busy shooting the wedding, my visit was spent entirely with various friends who I have known and loved for years. It was the first time in a long, long time that I felt such a strong sense of community.

The magical, longevity-promoting island of Ikaria reminded that while I may eat well and go to yoga and get some sunshine here in Austin, without a powerful feeling of belonging, without being surrounded by friends (who have truly become my family), a major ingredient for a healthy (and happy) life is absent.

Equally necessary is a sense of purpose. In Okinawa, where people regularly live into their 100s, there is a concept they call ikigai, which means “the reason for which you wake up in the morning.” These past couple months, I have lost my connection to ikigai. I have spent the better part of the last few months sleeping. A lot. Because if I feel I have no reason to wake up in the morning, why wake up?

But my visit to New York splashed some metaphorical cold water on my face. I did wake up – with every photograph I took at that wedding I woke up. I remembered how powerful my drive to document human connection with photos once was, and how much I still enjoy it and feel fed at a soul level by it.

I remembered my purpose, my ikigai, with each beautiful comment I received from you in response to my last post about turning 37. What a perfect, incredible gift it was to be the unexpected recipient of all that love and appreciation. Like every photo I took, each comment roused my soul and inspired me to remain in this higher vibration, and not fall prey to my shadow.

Buettner concludes toward the end of the article, “As soon as you take culture, belonging, purpose or religion out of the picture, the foundation for long healthy lives collapses.” That’s quite a formula. It can certainly guide us in the right direction of making changes to our lives that support our health and happiness.

So I ask you…how can you improve one or some or all of these areas of your life to create your own version of Ikaria wherever you are, right now?

Click here to check out the article in The New York Times!

Sometimes I can’t write because I feel afraid that no one is out there listening and I am just fooling myself, thinking that I matter. Sometimes I can’t write because I feel afraid that my silly little thoughts are not enough to help you.

I often worry that I am letting you down by not posting enough, and then I definitely can’t write, because it just makes me feel overwhelmed, so I run to Netflix or Hulu for relief.

Sometimes I have moments of profound inspiration that I want more than anything to share with you, but then my daughter asks me to make her something to eat or I have to pay some bills or some other such daily-life nonsense and then it fades away, and is lost.

Or if the job of living is not enough to assassinate my inspiration, sometimes my own fear and doubt gladly step up for the task.

Sometimes I have nothing to say. Sometimes I feel that I am simply meant to receive and integrate what I’m learning and feeling and though I wish I could communicate with you, I just can’t.

Sometimes I’m afraid you won’t love me.

Sometimes I fear I am not good enough to do what it is I want to do. Sometimes I fear there is nothing I could say or do that could make your life better.

But mostly I fear that I don’t matter. That I am irrelevant. That my voice will be lost among the endless sea of voices broadcasting their existence across the world wide web. I mean seriously, who doesn’t have a blog these days?

I want to be writing every day so that you can count on me to be there for you no matter what. But I haven’t yet figured out how to be there for myself, no matter what. I’m working on that.

I don’t know what else to say except that my heart is with every one of you who is reading this who might be struggling, or feeling lonely or hopeless or frustrated or heartbroken or scared. I am with all of you. And I guess I  hope that sharing my shadow with you here in this public forum will make you feel less alone, and in so doing, be a sort of redemption for me too.

Ram Dass once said, about the meaning of this crazy life, that we are all just walking each other home. I like that.

Sometimes I wake up in the morning, turn on my computer, and feel absolutely overwhelmed with the sheer number of emails demanding my attention…watch this video, sign up for this webinar, buy this product, shop this sale, read this blog post, etc etc etc.

On the rare occasions when I log onto Facebook, I find myself instantly agitated by the options before me. Should I click to watch this video? Should I read this person’s status update? Oooh look someone posted pictures of their vacation in Hawaii! Hey this person just liked this other person’s status…

It’s endless. And the problem is that our nervous systems haven’t quite caught up. We are not designed to absorb the enormous quantity of information streaming toward us from all directions, all the time. Our only choice is to filter most of it out, but even the filtering process creates a stress on our systems.

We do not live in a culture that promotes being over doing. We do not live in a culture that encourages silence and looking inward. But these things are essential to healing. They are essential to living a balanced and centered and healthy life.

Lately, when I feel this overwhelm take hold, I’ve been turning everything off and sitting in front of my altar (where I’ve placed candles, sage, and incense, and some images that make me feel good) and I go back to the basics. The most basic act of being human, in fact. I simply breathe.

It’s challenging for me to turn off my monkey brain and turn a blind eye to my to-do list, so I focus on the breath by breathing in and out through my nose and simply noticing the way the breath feels warmer coming out my nostrils than it did going in. Putting my attention on this subtle temperature shift is enough to keep me present. It helps me to slow the pace of our webcentric world and reclaim the pace me and my nervous system prefer.

If the ride’s going too fast, you can always hop off and take a break. You just have to remember that you have that option.

I was expressing this frustration to my dear friend and soul sister, Lina. “I want to create!” I declared. “Why can’t I write anything today?!”

“Let the feelings do what they want to do,” she said. “You always think you need to do. But sometimes you just need to be.”

I want to create something beautiful and new today, but I must admit that today is a day for input, not output. So instead of trying to write, I decided to sit on my patio and enjoy the gorgeous 75-degree Austin evening and read some Rumi, one of my favorite poets.

And, as fate would have it, I read a Rumi poem that I very much want to share with you. So instead of creating, today will be about sharing.

I Trust You

The soul is a newly skinned hide, bloody

and gross. Work on it with manual discipline,

and the bitter tanning acid of grief.

You’ll become lovely and very strong.

If you can’t do this work yourself, don’t worry.

You don’t have to make a decision, one way or another.

The Friend, who knows a lot more than you do,

will bring difficulties and grief and sickness,

as medicine, as happiness, as the moment

when you’re beaten, when you hear Checkmate,

and can finally say with Hallaj’s voice,

I trust you to kill me.

Unlike “be free,” which creates expansion, “I know” creates constriction. If you know, there is no room to learn. If you know, then you can only ever see what you have already decided you know. If something doesn’t match what you already know, it will be ignored or discounted, because it doesn’t fit the reality that you’ve already decided is the truth.

There is no space in “I know.” “I know” is a contemptuous phrase. For those who “know,” there is black and there is white, but gray is absolutely intolerable. For those who know, believing in gray makes you a fool.

Doctors often fall prey to “I know.” The ones who don’t – the ones who allow themselves to be free to not know are the special ones. Those are the doctors I want to see. The ones who are brave and secure enough to embrace the truth that they don’t always know the truth.

Fighting for Your Own Limitations

“I know what multiple sclerosis is. I know that there is no cure. I know that what I eat has nothing to do with how I feel. I know that my personal relationships have nothing to do with how sick I am. I know the cause of my illness. I know that your way of seeing things doesn’t apply to me. I know that I am a victim of random unfortunate luck. I know that only doctors know. I know that I am not responsible for my own healing.”

These are the anthems of those with chronic illness who “know.”

“I know” is a closed door. “Be free” is an open door. But people who know will fight hard for their own limitations. People who know will defend with passion and fervor what it is that they think they know. And that’s okay. If you choose to be free, you can tolerate people who know.

But understand that the reverse is not true. People who know will be terrified and enraged by you if you choose to be free. You will be ridiculed, discounted, marginalized, and run away from. These two phrases and their respective realities cannot coexist for those who know.

The openness of being free is a direct threat to the certainty of knowing. The willingness to revise one’s position. The willingness to admit vulnerability. The willingness to embrace the fundamental uncertainty of life. This is the essence of being free. And this, by the way, is the expansive state that makes healing possible.

I drove my lethargic bag o’ bones there, all the while dreading the feeling of not-good-enough-ness that would surely descend upon me when I failed to meet my own yogic standards.

But I got lucky today. I was blessed with a yoga teacher who delivered exactly what I was too constricted to realize I needed. She turned the entire class into a meditation on the words Be Free. Today, she said, our postures are not about creating shapes, they are about letting go. Letting go of anything that keeps us from feeling free.

The power of words is remarkable. At first I repeated the mantra in my mind just because she said so. Every inhale was Be. Every exhale, Free. But with each repetition, the meaning of those words began to expand throughout my body and take on multiple meanings. As I absorbed those meanings, I felt the entirety of me relax.

Be Free of the tension in my muscles. Be Free of my harsh self-judgments. Be Free of the beliefs that don’t serve me. Be Free of the fears that bind me. Be Free of my monkey mind, that tape in my head that won’t ever stop playing. Be Free of of my unforgiveness. Be Free of my anxiety. Be Free of my heartache. Be Free of my loneliness. Be Free of my envy. Be Free of disappointment. Be Free of expectation. Be Free of my inner tyrant.

How well I performed the postures didn’t matter in this class. This class was about allowing myself to Be. Free. To let go. To love myself. To Release.

Be Free of “I should.” Be Free of “I should have.” Just Be. Allow.

Words are potent. As my yoga teacher reminded us at the end of class: Your thoughts become your words. Your words become your actions. Your actions become your habits. And there you are.

So today, Be Free. Take some time to practice this mantra. Sit down on the floor or on a chair and inhale Be, exhale Free. As you do, see if you can let go of some of the tension you are holding in your muscles. As you breathe in with Be and release with Free, remember that all the wisdom of the greatest healers, masters, leaders, and sages is within you.

Trust yourself today.

A few days ago, I was with him when he had one.

Today we were talking and he said he wished I hadn’t seen that because it’s ugly and dark and scary and he thinks anyone who witnesses it would, and probably should, turn and run the other way, fast.

I told him he’s been blessed with a very effective no-guts filter for use with the people in his life, and for that he should be thankful. In other words, if someone doesn’t have the intestinal fortitude to witness his, mine, your very human struggle with pain, discomfort, frustration, and fear, then good riddens. Don’t let the door hit your *ahem* on the way out, as they say.

To some extent, we all live in fear of someone we care about discovering our “ugly” side and rejecting us. It’s perhaps the most pervasive fear of being human. If they find out the truth about me, we think, then any chance at my being loved will be destroyed. Sure, they may like me when I am smiling and showered and my hair is done, but what if they saw me when my MS was at its worst? When my cluster headaches were raging?

These thoughts are often too horrifying to take. Especially if you’re single and nobody’s promised you for better or worse yet. But of course, as many of us may already know, even that promise isn’t always kept. So anything that makes us less attractive by the ruthless and massively unrealistic Hollywood standards is to be banished, hidden, shamed out of existence.

An unexpected gift

It was tough to watch my friend in pain because I felt powerless, and I don’t like feeling powerless. But in a way, it was also very fulfilling to be there, because it allowed me an opportunity to be a better human. I saw his ugly side, but to me it was beautiful,  not because suffering is beautiful, but because sharing true intimacy with someone is beautiful.

And what could be more intimate than allowing someone to see you at your lowest and most vulnerable? Experiencing that with him was a gift to me, strange as that may sound. The gift was the feeling of my own heart expanding by simply being a compassionate witness who did not run.

Illness is dark and scary. It’s not sexy. But I think we have it backwards when we worry that someone won’t accept us because we may not be well. It’s not that we are afraid we are ugly, it’s that we’re afraid they are. We are afraid their heart just may not be big enough to love all of us.

And beyond that, it’s not the fear of them running away from our ugliness that terrifies us, it’s the possibility that if the roles were reversed, we might do the same.

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She was lying on the bed, sobbing in stacatto gasps, crying “I can’t sleep! I tried and I can’t! I can’t! I can’t! I tried!”

I asked her to breathe slowly and deeply, but she was too far gone down the road of tantrumville to listen. I attempted reasoning with her (foolish), explaining that she needs to give it more than two minutes to “try” to sleep. But she was committed to her story, declaring “I’ll NEVER be able to sleep!”

I knew enough to know that she was in her head, making pictures of this awful future where sleep could not be had – a faulty conclusion she’d come to based on her two minutes of “trying.” I also knew that attempting to get my child, in this moment, to follow my logic was useless. The only solution to bring her back from this imagined future of sleeplessness was to anchor her awareness back into the present.

In order to do that, I knew I needed to move her attention away from the pictures she was making in her mind (she’s very visual, like her mama) and back into her body. So I put my hand on her back and I said, “Where is mama’s hand?”

At first she was resistant, but she said, through her tears, “On my back.”

I moved my hand to her cheek and said, “Where is mama’s hand?”

She said, “On my cheek.”

I squeezed her shoulder and said, “Where is mama’s hand?”

“On my shoulder,” she said. By this time, her breath was beginning to slow to normal and she had stopped crying. I continued, moving my hand to her head, to her ear, to her neck, to her back, to her arm, to her cheek. “Where is mama’s hand?” I would say, and she would answer, her voice filling with relief and love.

I watched as her entire body calmed and quieted. Within four minutes, she was asleep.

All she needed to exit her nightmare was to release the images she was making of a terrible future and come back to the present moment, in which everything, she discovered, was actually okay. Mama’s hand was on her cheek, and she was okay.

Back to the Present

Sometimes it’s so difficult for us to comfort ourselves like this. I am so often swept away by my own less-than-desirable visions of the future that I forget how simple – how essential – it is to anchor myself back to the present and just be here, now.

What I did for my daughter I can do for myself. I can anchor my experience back to the present by reminding myself I have a body. By touching my arms, my hands, my thighs, my feet, by feeling my own physical being and paying attention to the sensations of my own existence in this world of flesh and bone and matter.

When we are truly in the present moment, we cannot feel anxiety. Anxious thoughts arise only when we leave the moment we are actually in so that we can instead imagine a frightening future. So today, I invite you to come back. Come back to now. Use a phrase one of my favorite authors, Michael Brown, author of The Presence Process, recommends: I am here now in this.

Touch your body. Remind yourself that you’re here, in the world. Notice the way your entire system calms, as you come back to now.