illness

the in between space

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When I wake up at 3:00 am nowadays, which isn’t necessarily a new thing, it’s as though I can feel all of the others who are awake with me. Our restless sleep-addled minds negotiating panicked thoughts, now-rational fears, and worries, so many worries. Trying to comprehend the unknown we are all swimming in. Trying to settle into liminality, the in-between space that follows one thing but precedes the next.

Generalized mild anxiety a constant companion, not just in the middle of the night but also in the morning before coffee. And after coffee (is the caffeine making me more anxious?), after lunch (how many English muffins is too many?), after a walk (did I keep enough distance when that jogger ran by?), after a shower, after changing from my black leggings into my grey ones, so as not to feel like a complete sloth in this bizarre new normal.

I’ve been keeping a strange kind of diary on my phone, little notes about what happened each day, including the number of confirmed Coronavirus cases (170) and COVID-19 deaths (1) in my city. Watching the progression here as I track the pandemic everywhere else.

Questions we ask each other now:

How is home schooling going? (My son prefers his real teacher, and misses learning and playing with his friends. I never once before contemplated home schooling my children. Today’s learning consisted only of watching silly Smithsonian Museum of Natural History videos on YouTube with my seven-year-old. Teachers are amazing humans.)

How many Zoom birthday celebrations have you been part of so far? (Three. I wonder if we’ll still be having birthdays over Zoom in a few months when it’s mine.)

What is one of the hardest things? (Guilt. That an autoimmune condition keeps me from being able to even go grocery shopping for my family. That I am safe in a comfortable home while there are people living on the street or in shelters, incarcerated, in ICE detention, unsafe living with their abusers, unsure where their next meal will come from, out in the world fighting for lives in hospitals, picking our food, packaging and delivering the things we need, stocking our shelves, picking up our trash, driving our buses and subways… Guilt that sitting here with my computer on my lap is the most helpful thing I can do for the world right now. I know that even this guilt is a privileged emotion, and completely unproductive, but I’m human, so it’s there.)

We are all so deeply and intricately interconnected, one shared humanity.

What has been an unexpected blessing? (Family dinners happen almost every evening now. And I love the dozens of supportive text threads I have going with my people across the country and around the world, the opportunity to send them love when I’m thinking about them, which is a lot. Also, the beauty of spring, which is unhindered by all this.)

How are you doing? (As well as can be expected under the circumstances. Moments of anxious intertwined with strange moments of zen. Thankful for a zillion comforts. Scared for my father who lives in a nursing home across the country; grateful for the amazing humans who care for him. Heartbroken for our world. Inspired by the goodness of humans.)

How about you? How are you doing?

 

 

resilience

/ gal / 2 Comments

Cracks

re·sil·ience

rəˈzilyəns/

noun

1.

the physical property of a material that can return to its original shape or position after deformation that does not exceed its elastic limit.

2.

an occurrence of rebounding or springing back.

3.

the capacity to recover quickly from difficulties; toughness.

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Resilience is a big word right now. There are studies about teaching resilience and grit to children in schools. Which I think is awesome, and much more helpful to becoming a functional human than understanding geometry, or even global politics.

Facebook COO Sheryl Sandberg, whose husband died suddenly two years ago, is making the media rounds speaking about her new book and foundation, Option B, which “helps people build resilience and find meaning in the face of adversity.” I admit that there is a part of me that is resistant to the idea of a celebrity making this into a movement – giving us collective permission to grieve properly and in our own ways through our losses, and teaching the world around us how to better support us. I’ve been talking to some of my friends who have also lost young children and our conversations seem to go like this: What do you think of this? Haven’t we been going there for years now? This stuff – this really tragic, really hard, really bad stuff happens so much more than people want to know. Why does tragedy need to happen to a celebrity for it to become okay for our society to finally talk about it?

But the nagging feeling I get when I look at the Option B website is this: Do we have to make something out of our losses, our challenges, our trials? What happens if we don’t?

I think most of the time, when it happens – when we develop resilience – it’s not because we did anything. It just happens. And sometimes it doesn’t, and the hard things are just hard, and they suck, and you don’t come out the other side feeling more capable of handling anything that might come next. You are just tired and you want to shout, Enough already! This effing blows!

And that’s okay. You are not a failure if you don’t come out the other side of your awful tragedy feeling stronger, wiser, or more resilient. You are not better than with resilience than you are without. There is nothing about resilience to be proud of. Resilience doesn’t have to be the goal. In fact, there doesn’t have to be any goal when life is hard except getting through a day.

Recently I had the thought that I have earned my resilience out of all that I have suffered or struggled through or overcome. But have I really? Or did the resilience I have just develop on its own? Maybe it’s even something I came into this life already possessing.

I just don’t know that I buy the notion that what doesn’t kill us makes us stronger or more resilient. The idea that we are transformed into better people out of what we have lost, what we have grieved, what we have suffered. Because I would give up my resilience and strength and wisdom in a heartbeat if it meant that my baby didn’t die eight years ago and instead was a healthy girl about to finish third grade and celebrate her ninth birthday. Or that my parents hadn’t turned my world upside-down at age 15 when they divorced. Not to mention how quickly I would give back the autoimmune condition I have struggled to live a normal life with for 20 years.

Because living children are better than resilience. And physical health is better than the emotional strength gained from surviving an illness. And a stable family of origin is better than the wisdom I gained from being independent and responsible beyond my years as a teenager. All those hours in therapy and doctor’s offices and the neonatal intensive care unit took a lot of time, energy and money I would joyfully have spent otherwise. Like on a beach in Hawaii.

I get it: The human search for meaning, especially building meaning out of adversity. It’s what keeps us moving forward. It helps us to rebuild. Otherwise nothing makes sense, and it all feels like a big cruel joke.

But what if we can let it be okay to just live through adversity and arrive at the other side cracked, or even completely broken? What if we don’t have to overcome or become stronger, but just figure out a way to put one foot in front of the other and wake up each day feeling a little less shitty than the day before? What if there will always be a part of you that is keeping an eye over your shoulder for the next unexpected kick in the back of the head?

This is the thing: I don’t think we bounce back out of adversity to how we were before. Adversity changes us completely, forever. Even in our cells, our DNA. (see: epigenetics)

I think the idea of rebounding or springing back – which is often part of conversations about resilience – can be a setup for feeling 100% like a failure, even if you do manage to come out the other side a little stronger. You don’t bounce back because there is no back to go back to. You just do your best to move forward, maybe evolve a little, maybe transform a little – or maybe you just find yourself in unfamiliar surroundings, hardly able to recognize yourself, but accepting your changed self anyway. Because that’s your only option.

That kind of acceptance can require an enormous amount of forgiveness. Towards ourselves, mostly.

Maybe – not even by doing anything intentional – you even exceed your elastic limit, and you become bigger. Not better, just more expansive. Because we aren’t static. Even when we feel like shit, part of that feeling comes from knowing that there is something that feels just a little bit better. Even if we don’t exactly know how we might get there, or if we even want to.

After I lost my baby daughter, people would say things to me like,

I just don’t know that I could survive what you’ve survived.

And also:

You’ve been through so much.

With all you’ve been through, how are you as grounded and balanced (as you seem to be; meaning: How are you not a bitter, angry mess?)

You’re so strong. (Meaning: From now on, this is how we expect you to be.)

You’re so wise. (Really?)

And I would reply, But you would survive. Because you just do. Because you aren’t given any other choice.

I’ve surprised myself with what I can survive. People around me surprise me constantly, too. Friends and family battling cancer. My refugee clients at work. Everyone I know who lives with a chronic illness. I just don’t know that surviving is any great feat. It’s just what we do when shit happens.

I don’t get knocked down easily anymore.

I have survived “the worst” already, but I also know that doesn’t mean there definitely isn’t any more “worst” to come.

I know that I can handle what life is going to dish out next.

Maybe partly because of resilience, because of strength, because of wisdom.

But mostly because I just know I have to.

Perhaps that’s all resilience is. One step in front of the other. Forgiveness. And being really, really gentle with ourselves and each other.

Because life is hard, and it can be good too. That much I believe.

let’s talk about trauma

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trauma: 1. an emotional wound or shock often having long-lasting effects. 2. any physical damage to the body caused by violence or accident or fracture etc.

Big, powerful word. It summons up thoughts of war, genocide, violence. Veterans who come home with the invisible wounds of PTSD after having fought in wars. It makes me think about my grandparents who were Holocaust survivors and what they carried deep inside them from what they had lived, from all they had lost. It makes me think about friends who have battled cancer, friends who have lost spouses, friends who – like me – have lost babies. It makes me think about all of the ways life can turn on its head in an instant, when we least expect it, and change us forever – change us down to our very cells.

Did you know that our cells carry our traumas?

I’ve been thinking about trauma lately, naming it, recognizing it inside myself. I’ve been looking at the trauma I still carry – even now, when I am feeling so much better – from the years I felt like such crap because of the auto-immune illness I live with. From the years I was so sick and struggling so completely to feel just a little bit better.

I have spent years – literally years – guided by my primitive/ancient/reptilian brain, living in fight-or-flight mode. I have spent years being cautious, fearful, and so completely careful about every bite of food I took, worried about how each bite would affect my body, frustrated to the point of rebellion that I couldn’t just fucking eat. I developed a superpower during these years: It’s an internal radar that allows me to find a bathroom – anywhere, anytime – within minutes if not seconds. I learned how to manage my condition in often obsessive ways that allowed me to trust my body just a little bit while taking away my ability to ever completely relax.

I developed other superpowers living as a sick person with a hidden illness: I got really, really good at managing my medical care, managing medical paperwork, getting reimbursements. I am the master of customer service calls, especially to health insurance companies. I got really good at researching EVERYTHING and taking what I had learned and the many resulting questions to my doctors. I got really good at developing supportive relationships with those doctors.

Do you see the theme, here, though? I am a fighter, a survivor. If shit hits the fan, I’m exactly the kind of person you want on your team. I fight. I’m persistent. I’m smart. I think 10 steps ahead at all times. I consider all possibilities in advance and I’m always prepared for anything.

But this is a crazy exhausting way to live. Especially when I was already feeling physically unwell. And especially now when I am feeling better.

(Do I even dare write “now that I am feeling better?” Am I really truly feeling better, for real? Can I trust that to be true?)

It’s a difficult lifestyle to unlearn because the trauma is still there – all the way down into my cells.

I was first diagnosed with this condition 19 years ago, after several years of other body challenges. I’ve had years of terrible illness and years with no symptoms at all and no need for meds. I’ve been surprised repeatedly when the symptoms returned, until eventually I came to expect they always would at some point – at least that’s what doctors tell you when you have a chronic condition. I’ve wrestled with whether or not to go on medication, felt frustrated when medication didn’t work or stopped working, and felt tremendous fear at how the medication might be hurting more than it helps.

I am so accustomed to living in a constant state of alert!-caution!-prevention!-attention! that it’s really difficult to turn off. To relax.

To trust my body. To trust that I am well.

The irony: Stress worsens my symptoms. That has always felt like a cruel joke. Just relax and you’ll feel better, I’ve been told, usually by people who are not living with an illness. I ate paleo – gluten free – grain free – vegan – raw – macrobiotic – (whatever) and healed! Try it, it will heal you too! This never helps me, just makes me feel like I’m chasing rainbows. Like I am never doing enough. And it makes me even more terrified of food. And I really enjoy food, a lot. And it’s not like I can just stop eating. Another cruel joke.

So how do we do it – how do we unlearn the fight-or-flight response once it is so familiar, so deeply ingrained in us? Is it possible to release, to heal some of the trauma, to lighten our load?

This is how I start: By writing these words. By naming it. Calling it by its name.

I think we all hold trauma in some form – big or small. I think when we keep it to ourselves, inside ourselves, we allow it to grow bigger, big enough to overwhelm us and drag us down. We are all fractured in some way, aren’t we? We are all imperfect and vulnerable. There is no shame in that. No need to hide our cracks, our scars, our wounds. Our traumas.

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And you? Is there a wound you hold that you’d like to name, to diffuse a little, even to release? How do you do it?

 

 

the myth of perfect, or: you are not alone

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GalFlying

I sat down to write yesterday, laptop on a pillow on my lap, in the armchair in my office space off the kitchen. The house was quiet and the birds sang to the spring outside. It took about 3 minutes before I surrendered and let my eyes close, because that is all they wanted to do. I wasn’t completely asleep, but I wasn’t completely awake either. Catnapping with my reading glasses on, laptop now closed on its pillow, half aware of how good it felt to just rest, half aware that I should be doing more with my precious time. I dozed for about 15 minutes, then went to take a walk around the block. That will wake me up, I thought. As I walked, I wondered why I was so tired at 11 o’clock in the morning. No answer came except, Just tired, no reason. No need to figure it out.

I’m going to be 44 in a month and a half. Not much different psychologically than 43, I am still officially middle aged. But I am aware of the process of aging in a way I don’t think I have been at other times in my life. The grays in my hair and the tiny lines around my eyes are not new, but their presence is in sharper focus, consistent. Sometimes I still get pimples, which feels like a cosmic joke, my body saying, Hey, at least you’re still a little bit of an adolescent. But what’s different at almost-44 is this: I don’t really trip out about it all very much anymore, not in the way I used to.

A wise friend who is now in his mid-seventies once told me – as I bemoaned the auto-immune challenges I have lived with for 20 years – that it is an illusion to think that it’s possible to attain perfect health while occupying a physical and very human body. Think about that: There is no such thing as perfect health. Bodies are machines, and machines get old and slow down and start acting up. And some act up long before they are supposed to – like my Tikva’s fragile little body that struggled so hard simply to get enough breath; like my friends who have courageously battled cancer in their thirties and forties.

It’s liberating, though, the idea that I don’t need to get to perfection because perfection doesn’t exist. Liberating to accept that I can still feel good – even thrive – within the container of an imperfect, fragile and slightly beat down body. I look at my 11-year-old daughter and see myself at her age, before the regular beat down of life had begun and I never even thought of the state of my health because it simply was. I think of that time and realize just how lucky I am that I could take for granted what is not always guaranteed – healthy and abundant food, warm clothing, shelter, safety, community, friends, family, love. Health.

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I used to search for solutions, grasp at ways to heal from all that ailed me, ways to achieve the mysterious perfect, radiant health I was convinced everyone else around me had attained. I haven’t given up on the idea of radiance, the idea of thriving. But I’ve let go of perfect. And I no longer attach my wellbeing to a specific way of eating-being-living. I get annoyed, now, at the thousands of messages all around that promise complete healing of fill in the blank if only you eat fill in the blank, avoid fill in the blank and do fill in the blank every day, because if it worked for fill in the blank it will definitely work for you and me, guaranteed. I don’t trust it anymore, not simply because I’ve tried it all, but more because the only thing that’s been consistent for me no matter what magic bullet I’ve tried is that I get neurotic and obsessive and end up feel deprived because I can’t enjoy the things I love. I used to follow a doctor and author on Facebook who wrote about hormones and health for women. Once she posted on her feed the five things to stay away from in order to feel great and be healthy. They were: sugar, caffeine, gluten, dairy and alcohol. I had to laugh because… Really? Honestly, what is the point of life if you can’t enjoy chocolate and cheese? I stopped following her feed.

I can’t help but be in awe of just how fragile we are in these temporary vessels; how incredibly miraculous it is that so much works when it works; how impossibly difficult it can be when it doesn’t; and how every single one of us – when we are truly honest with ourselves and with each other – struggles with something. There have been stories out there lately, brave coming out stories where people of all ages write about their struggles with illness, sharing on Buzzfeed or HuffPost or Salon about what they have always kept private because they thought they were the only ones struggling – because we can feel so much shame about being sick. The thing is, there is no failure in struggling in our bodies or with our emotions, and there should be no shame. Our culture is afraid terrified of death, and so we shy away from looking illness straight-on. We deny it, we chase after the illusion of perfect health – the magic cure that will bring perfection – and we feel like failures when we don’t achieve it. We keep our illnesses to ourselves, we feel alone. Until one brave young woman posts a picture of her colostomy bag on Instagram, leading hundreds of other young people to come out publicly as courageously as she did; and hopefully some of the shame dissolves and we feel less alone in our fragility. Did you see them, those posts? I couldn’t take my eyes off them – these gorgeous young people who have struggled, some since childhood, with irritable bowel disease, a lifetime of hiding their shame and their challenges with a hidden illness while they struggled to simply feel well. And did you see the incredibly badass pictures of women baring their mastectomy scars; turning society’s shame on its ass, turning it into pride, into strength?

If there’s one thing I’ve learned it’s this: The moment I have honestly and compassionately shared my own struggles with another person, I’ve let that person know that it is safe, acceptable and normal if they are struggling too. I’ve let them know that struggle is easier when you aren’t going through it alone. I’ve let them know that shame has no place where there is compassion.

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I am not an athlete. I’ve tried many things, some for extended periods of time – boxing, rock climbing, dance, pilates, yoga, resistance training, running – but I’m not someone who craves exercise and keeping at it is not where I am most disciplined. In spite of this, though, I still feel active. At 5’5″ and 118 pounds, I can lift my 28 pound son up and down the stairs with one arm, full laundry basket in the other. Don’t get me wrong. I am entirely capable of tripping myself out with plenty of I should exercise more, my legs are flabby, I should eat more leafy greens, the pimples are hormonal and I need to get my hormones in balance and eat less chocolate, I’m scared of what the medications I take might do to my body long-term, etc. etc. etc. All that goes along with the house is dirty and I need to mop, I should be writing every day instead of a few times a week, tomorrow I will be more patient when my children are whiny, I need to make more time to be outside, there’s nothing in the fridge for dinner, etc. etc. etc. I’m human and the nag of perfection still whispers in my ears too.

I try to be gentle, though – something I hear myself asking my friends on a regular basis: Are you being gentle with yourself? What did you do today that is good for you? I try to remember to praise myself for all I do, for all I am. I try to express gratitude for my health even when it feels tenuous. I thank my (flabby) legs for carrying me (and my son) up and down the stairs, for walking me around the block. I try to let myself nap in my chair if that is what my body needs, and I enjoy a cup of coffee on those mornings when my son decides to wake up and stay awake at 4:30am.

To my friends and those I don’t know who are struggling, who want nothing more than to feel better in your bodies, who are fighting for your lives, who are feeling in a deep place all the pain that is everywhere around us:

I honor you.

I honor your struggle.

I honor your wellbeing.

I honor your good days and your shitty ones.

I honor the shame you long to release.

I honor your deep desire to feel better.

I honor your perfect imperfection.

momentum

/ gal / 2 Comments

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photo: Kate Inglis

For a long time now, I have lived with a chronic illness. An auto-immune condition. What doctors like to call a disease. (I am not a fan of that.) I’ve never written it down quite like that before, that I live with a chronic illness. I don’t like that I live with a chronic illness. But I do. I’m surprised – sometimes stunned – that some unfortunate life circumstances have gotten me here. But I’m here.

I’ve written this post in my head so many times, yet shied away from writing and sharing it for so many reasons. Because it’s personal. Because who wants to hear about my auto-immune challenges? Because fixating on it doesn’t help anyone. Because I am tired of talking about it and thinking about it and dealing with it. Because I live it, and isn’t that enough attention to put on it? Because WHY?

But I wonder if maybe it could help for me to share. Not just to know I’m not alone (because I do know that) but also because I can’t possibly be the only one who struggles with something physical (and often invisible) in silence. I know I’m not, I’ve been inspired and moved when I’ve read posts and articles by friends and strangers “coming out” about their illnesses and struggles. And when I have shared my own story with friends, I’ve often gotten some form of, “I can relate!” from them.

We’re all dealing with something.

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I am by nature an optimistic person. I don’t give up when things get hard; there is always a part of me that hopes to feel better, that believes I can. That believes in healing (which is a complicated word for me). Overall I feel good. Overall I feel better than I felt a few years ago. When doctors ask me if I have any of the long list of conditions their questionnaires usually ask about, my answer is always, “Except for this one thing, I’m actually doing well.”

There are two ways I can look at myself and I’ve learned which one works best for me within the cycle of chronic illness.

There’s the micro-lens approach, where I look at every single detail of my body and health through a telephoto zoom lens to see ALL of the ZILLIONS of things that are going WRONG. Primary issue: My gut isn’t happy. Then: My hair is thinning. I’m always cold because I can’t keep extra weight on and my thyroid is probably low. My hormones are for sure imbalanced because I’m in my forties. My adrenals are definitely tired from years of physical and emotional stress. My skin is getting thinner and drier. etc. etc. This approach sometimes involves internet research, which leads to panic and despair, or sometimes hope that attaches to something that I haven’t tried yet that might, just might work (but usually doesn’t).

Then there’s the macro-lens approach. This is where I step back to get the BIGGER PICTURE, looking through a very wide angle lens instead of zooming in at the details. This is what I see through this lens: I’m happy. I’m peaceful. Overall I’m feeling better than I have in a long time. I’m healthy, and I have this thing that is a challenge and that I deal with. It’s chronic but it’s not lethal. And I know for the most part how to manage it. I know how to seek out good doctors and how to work with them and advocate for myself, essentially directing my own care. I am blessed to be surrounded with abundance and love and security. I eat well and take good care of my health and the health of my family. I have access to healthy ingredients. I have access to health care.

I am safe.

Can you guess which approach works best?

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I fluctuate between feeling acceptance and feeling frustration about my physical challenges. I’m starting to get that it is possible to feel both at the same time. For me, there is a lot of peace to be found in acceptance. I don’t like feeling as though I am trapped in my body and fighting against myself. Screaming out, “No, no, no! I don’t want to live with a chronic condition! How did I get here and how can I get out of this confining box?!” Because the thing is that I can’t get out of this body, and I don’t want to. I like it here. Very much. It’s the only body I know and it is the vehicle carrying my soul this time around. And I am nowhere near done with this time around, so this is the body I get till I’m 101 and I can go peacefully in my sleep.

My husband once pointed out to me that I have a lot of momentum invested in being sick. He’s right, and at the same time, I’m not really sure how to manage my condition without investing so much momentum in it. Because it is a lot of work managing an illness: Time in doctors’ offices, time and money spent at the pharmacy, time and money getting tests, time and money getting treatments, insurance paperwork to sort through, reimbursements to make sure I get, time reading about things that could help, the energy I spend thinking about what to eat that won’t hurt more than it helps. 

Fear. Fear is a lot of work. I don’t like fear, and most of the time I don’t live in a place of fear. The one thing I can’t quite shake, though, is the fear that I might never get better. That this is as good as it gets. And I mean better in a very broad sense, which is where acceptance comes in: For years I resisted accepting that I would need to live with taking medication (possibly for the rest of my life) to manage my illness. I was determined to get better, naturally, forever. (That was a very heavy burden to carry, a very abstract and untenable goal to reach.) Then one day, after literally years of specially tailoring and limiting my life and still feeling like crap, I surrendered. I went for the big guns and I took the heavy drugs. And I started to feel better. And I had about 9 months when I felt normal again, where it was all worth it, where I forgot I had an illness at all, where I could eat normally and go on long walks with my family. The acceptance paid off and I was able to relax for the first time in years.

Then a round of antibiotics for a sinus infection set the wheels of my illness in motion again and I’ve been trying for 9 months since to calm things down again. (Or, I’ve thought, it was all just a coincidence and the antibiotics had nothing to do with it, and the medication just stopped working; which, I’ve learned, happens.) And sometimes it feels like new things are starting that are also challenging. Sometimes it feels like I can’t eat anything without paying a heavy price later on. Sometimes I feel trapped in my house and fearful of getting in my car. Sometimes I feel like I want to tattoo my forehead with, “I have an invisible illness!” so that everyone will know and I won’t have to explain why I can’t do something or eat something.

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Recently I was at a holiday party talking to a man in a wheelchair. He was in his late fifties or early sixties and had been paralyzed at age 20 following an accident. He also lived with his own auto-immune condition similar to mine, so we had experiences that were shared and others that were not. And that is what we talked about, about disabilities that are visible and those that aren’t. About planning every inch of your life to make sure you can get through a day feeling good and functioning in a way that is expected by others. About the many things “other people” just cannot understand. All these things we talked about juxtaposed with my awareness the entire time that I really wanted to get a chair so that I wouldn’t be towering over him as we spoke, but every chair in the room was taken by other guests. All these things we talked about while I was aware of how strong my legs felt as they held me and moved my body. All these things we talked about as I felt so grateful to be understood.

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I think the lesson here must be about directing the momentum in another direction, harnessing all that energy towards the shift I want to create. Following the good feelings I feel and the good feelings I want to feel and calling on the rest of me – physical, emotional and spiritual – to move ahead towards those feelings. It’s a fascinating experience, learning that I can feel good amid something that is a struggle, rather than giving in to that struggle and letting it pull me under and take over.