4 am and the Prednisone has me up again. Mostly because I'm so hungry I could eat a wheel of Cowgirl Creamery triple creme cheese with bread or half a fruit and custard tart and those are just examples except no that's pretty much what I've eaten yesterday and today. In addition to a lot of incredible homemade Indian food a friend made for me and handfuls of cashews and pistachios and a chef salad and protein shakes and protein bars and not a lot of vegetables I see, partly because going grocery shopping has been beyond my abilities and partly because sometimes vegetables are beyond me. I have been drinking Arbonne Greens Balance to make up for that.
I like what I write here to be relatable and when I go into medical stuff it's probably not too relatable for most. I've spent the last almost 30 years of my life denying or trying to deny how much my medical conditions affect my daily life, how they don't make me different. But no. That's wrong.
Different than whom? Who knows. The normal. The measurement, made up in our own minds that represents what we all should be, based on comparing our insides to other peoples' outsides and coming up with something that isn't real.
Prednisone. I'm flying high on it again. Not for the first time and probably not for the last, I have this super power surging through my body and my mind like a blow torch. It's intense. I feel like I could do anything, solve any problem. I see connections in my mind's eye, between people or ideas or situations. It takes everything to the nth degree. Makes it hard to sleep. Makes me want to write buckets about twelve different ideas at a time except it's even harder than usual to get butt in seat and ask the words to come out. It feels like anxiety. Jitters. Being on speed, though I've never been on speed. I have to take my own hand and lead myself to a quiet spot to say, shhhh. Rest. This is not real. Your body needs a nap, a break, glasses of cool water. Try to go back to sleep.
The other confusing thing about the pred is that for the most part it feels like how I should feel. Like how normal people feel, if there are normal people. I have energy. I can do things like clean the kitchen without sapping all other available energy reserves. I am a better parent. I have good ideas and follow-through. So then I have a hard time trusting what is real. How I'm supposed to feel. What is my baseline?
I've been very open with the people in my life that I'm taking a lot of steroids right now, mostly because it is so front and center in how I feel. I became aware that I'm talking faster than usual or zipping around the room, or that I've said something with greater intensity than necessary (although that may just be my style) I'm roided out. That's what's happening. So I tell people, give them a warning or an explanation. Like calling Stephanie yesterday and telling her "I have five or six different things to talk to you about that are of varying degrees of importance and some are intense. We don't need to talk now but I want you to know they're on my mind." Phew.
A few people have said to me "You make it sound kinda good!" and I get that. I mean, it is kinda good. I feel super. Literally. I feel positive about things, I'm getting a lot done, I'm writing. I've held some yoga poses that I usually can't do. The clarity is my favorite part. That's the part I want to keep forever, even though I know I can't. It will go away too.
Here is a funny, weird, sad story. When I turned 40 this past March I went out to dinner with my family of origin--my mom, dad, sister and brother. This was a rare thing--the last time we did it was several years ago right before my brother went to Ghana for the Peace Corps. My parents are divorced and though they're far beyond civil with one another and we are regularly together for larger family events with the grand kids, we haven't been a five-person unit for decades. But when I hit this milestone birthday and thought about what my heart truly wanted, what it wanted was to sit around a table and share food with the people who made me. We had a wonderful dinner, complete with funny and frustrating patterns that have been in place since Martha, Ira and I were kids. We had deep discussions, which is one of the things we love to do.
At one point I mentioned that I'd thrown the last of my Prednisone away, flushed it down the toilet actually. I know, that's bad. And that's part of the point. The four of them were equally aghast when I said that. "No! You can't do that! That's terrible! So bad for the water and the fish and. . . "
I was embarrassed but got over it. And I promise I won't flush meds again. I wasn't thinking about the water when I did it, I was thinking I didn't want my kids to find the pill bottle and somehow get into it and take the remaining ten pills. It was note-worthy to me that I'd finally gotten to toss them because I'd been taking from a lot to a little of the steroid daily for four years for my colitis. The last time I was on a ton was after being hospitalized in September 2015 (you can scroll back and find that I was writing a lot at that time too). I finally weaned off sometime in 2016 but I held on to the bottle, just in case. Just in case I flared and I need immediate relief. Just in case. So it felt good, even a bit momentous, to toss it.
A couple days after our dinner I realized something. My family was truly horrified that I'd put those pills into the sewer system, into the waters of the world. But my own body is just full of this stuff. So many meds. Handfuls for years. Taken without much thought, without much noticeable side effect. It made me feel kinda sad.
This essay is rough but I"m posting it anyway. It makes me feel twitchy to write too much about health stuff so this will be the last of it for a while. Going to try to go back to sleep for another hour or two.
About Me
- Hands Full
- Learning and trying to be kind and living my life as fully as I can stand it.
Friday, June 30, 2017
Thursday, June 29, 2017
Medically fragile
"I worry about you, because you're medically fragile," my friend said to me three weeks ago.
And for some reason, after more than thirty years of qualifying for this designation, I heard it. It might be too strongly put to say that I embraced it but not by much. I took it in and allowed it to become part of my identity, even though the choice was really only to recognize it since it was definitely already there.
I am medically fragile. My body, in all its strong, wonderful, amazing glory, is more fragile than most. Oh.
For years people have told me that I'm hard on myself and I've hated to hear it. It was one of the most common observations made to me and I shrugged it off with exasperation each time.
For years people have told me that I'm strong. They look at me in wonder, in admiration, when they hear about the transplant, about the twins. They wonder if they could do it and I say "Well, what choice do I have?" and move on.
Those attributes come from the same place--the sheer force of my will that I will exert to make the world, my life, be what I need it to be. Except that's not how it works in my body. I've just been ignoring it, I haven't been changing it. I can't change it.
Nikole is a doctor. A surgeon. She is also the Chief Medical Officer at the organ procurement organization where I work. She is my friend and my colleague and we were pregnant with twins in neighboring offices at the same time--people joked that they didn't want to come to that side of the office for fear it was catching. We talk about all sorts of things--systems at work, marriage, food, boxing, life. We share meals, with or without our children in the background. Her wife Annie is also a doctor and also my friend. She opens her arms to me with a smile every time she sees me and the two of them make me feel so loved, so accepted, so taken care of, so valued. My gratitude is huge.
Why could I hear her when she named me? I don't know. She's certainly not the first person to say she worries about me, about my health. She's not even the first doctor friend to say so. But somehow because of who she is to me and how she said it and who she is in the world and also probably because she wasn't saying "And you must do this about it!" the words worked their way in and settled into my knowing of myself.
Medically fragile.
On June 11th Nikole and Annie hosted a birthday party for our four kids at their house. It was a team effort (I showed up, that was my role on the team) and it was completely wonderful and over-the-top. The night before the kids spent the night at Stephanie's and she and her family got them dressed up in new outfits, hair done, before taking them to the party.
I woke up and limped around the house because for some reason my left ankle and my right shoulder were aching. Quite a bit, actually. It felt like the day after a soccer tournament when the muscle aches and bruises coalesce and remind you of all the little body parts inside you that make motion possible. I'd taken my regular yoga class three nights before so maybe that was it? I took a bath with Epsom salts, drank some apple cider vinegar and a turmeric-almond milk latte to introduce inflammation my friend Maria had told me about. I lay on the couch reading and resting. I knew the best thing for me would be to miss the party and I also knew there was no way I was going to do that. I took some heavy-duty Ibuprofen and off I went.
The pain slowly increased as the day went on--I couldn't really lift anything or even raise my arms above my head. My knees were stiff. I slowly walked around, thinking and hoping that movement would loosen up my joints. I did a lot of sitting. It was a sweet, lovely day full of friends and happy kids and four of the most incredible birthday cakes I've ever seen.
Later that night after putting the kids to bed I laid down and took stock again. Everything was the same, my body still hurt a lot. And now my jaw hurt on the right side, to the point where I could only partially open my mouth. I got really scared.
"My jaw hurts now, " I texted Nikole. "Do I have meningitis?"
"No, but you need to see a doctor tomorrow," she wrote back.
Fuck.
Fast forward to the next morning and the series of phone calls and texts that I sent out to my care team, including my hepatologist Jennifer who is the main driver of the bus when it comes to my body these days and Bob the surgeon who transplanted me sixteen years ago who watches over me like a super-powerful guardian angel boss man.
Something is wrong. I don't know what. I feel terrible. What should I do and where should I go?
I recounted what had been going on with me lately, medically and personally. Jennifer took charge, trying to put the pieces together. A lab draw was the first step, to get the lay of the land. Everything in me told me that I needed to be in the hospital, based on fear and pain level and past experience. So even though she didn't say that, Stephanie drove me into San Francisco during rush hour traffic so I could start the process at CPMC, my safe place. My transplant center. The hub. She dropped me off and my sister took the baton, sitting with me in the same lab waiting room that I sat in every morning for a month and many times after that in the early post-transplant days. The pain was bad. The gastrointestinal symptoms were starting. I started a fever. As I waited to be called I texted Jennifer these latest updates. She was communicating with my GI doctor Nikhil. My sister was feeding me water.
Based on my verbal history and symptoms the light bulb had turned on and they were guessing that I was having an allergic reaction to the Remicaid infusion I'd gotten ten days before. It's a biologic--a medication made from antibodies grown in a lab that are infused into my body every two months to reduce inflammation and get my colitis into remission. It costs $13,000 every time and insurance partially covers it. Due to an insurance gap, some financial concerns and a few months of focusing primarily on my liver labs and what was going on there I had skipped a few treatments. When you do that and then re-introduce the medication into your body you can sometimes have a lupus-like reaction as your body says "Hey what's this crazy shit? We don't like this anymore". All my joints were inflamed because my super crazy powerful immune system was on attack. Which is what it does, especially under stress.
So even though the labs wouldn't be back for several hours, they felt pretty confident that was the problem. When the fever joined the fray Jennifer asked me to come up and see her after my blood draw.
Side note: I got my blood drawn and officially decided to end my unofficial social experiment when it comes to getting my blood drawn. I will no longer be gently suggesting that phlebotomists and nurses draw from the veins in my hands rather than the veins in my arms. No one listens. I will now be saying "You may not draw from my arms." We'll see how that goes. It happens the same every time--I tell them the veins in my arms don't draw, I watch them check out the veins and see the same thoughts pass behind their eyes--I can do it, they're right there, I'm going to try. And then they not only stick a needle in they then move it around inside my arm a couple times in an attempt to get into the scarred vein that's so close they can almost taste it. And then no blood comes out. Hello everyone. Welcome to my care team in which I am a vital part of the process and the owner of these arms. You do not get to decide anymore.
Blood finally drawn. Limped up to see Jennifer, rockstar mother of three young children, liver doctor and friend who always looks like a million bucks. She took one look at me and said "Oh."
She'd been initially concerned about my liver, because that's her main job and because I'd recently had a stent placed to drain a a stone out of my bile duct. She checked me out, confirmed no pain in my abdomen and asked what I wanted to do next. She could admit me so I could rest and not worry about the kids or anything else. Or she could send me home on a bunch of prednisone and pain killers, with the option of coming back to be admitted if I decided that was necessary. I chose Option B.
My sister loaded me up into her fast little car, after filling my prescriptions as I sat curled up in a chair in the lobby. The pain was very, very bad. She turned the seat heater on and the warmth, plus the first dose of pain meds, slowly sank in and gave me some relief.
As I write all this down I have to smirk in sad disbelief at how long it has taken me to truly see how fragile I am. I'm just so used to it. There's often even a strange comfort that comes when I'm in a medical crisis, because I know how to do it. I know how to be a patient.
My immune system is a super nova. When I am under threat, from the inside or the outside, it blasts everything in site--even my own self. It does this even though daily I take two medications to suppress my immune system. This is the cost of my force of will.
I have shown, over and over, that I can do almost anything. Survive fulminant liver failure when everyone around me thought I was going to die. Get pregnant when the doctors first told me I couldn't and then told me there was a less than 5% chance the IVF would work. Carry two sets of twins, post liver transplant and knee-deep in a three year colitis-flare. Work full time in a job it turns out I hated, even when I regularly had to walk quickly to the bathroom with diarrhea and regularly had to gentle rub my belly as the cramps surged through. Take care of four kids by myself some days and even occasionally make a good dinner while doing so.
I have refused to let my medical conditions determine my life. Straight refusal. Rolled my eyes when my mom asked me, over and over, to take it easy and be gentle on myself. Shrugged with modesty and a "whatever" whenever someone reacted with wide eyes to any one of my tales. It just is. What can I do about it? Just keep living.
But I think I will work on giving my tired, hard-working, traumatized body a break now. I will open my hands and let go of the false control that I've believed myself to be exerting over the world and relationships and circumstances around me. I will gently take my body's hand and lead her out of the forge where she has been working too much overtime for too long. I will not rely on the pills and my mind to hide the truth of what is happening in my cells.
I'm Megan and I'm medically fragile. I need special care. All help welcome.
And for some reason, after more than thirty years of qualifying for this designation, I heard it. It might be too strongly put to say that I embraced it but not by much. I took it in and allowed it to become part of my identity, even though the choice was really only to recognize it since it was definitely already there.
I am medically fragile. My body, in all its strong, wonderful, amazing glory, is more fragile than most. Oh.
For years people have told me that I'm hard on myself and I've hated to hear it. It was one of the most common observations made to me and I shrugged it off with exasperation each time.
For years people have told me that I'm strong. They look at me in wonder, in admiration, when they hear about the transplant, about the twins. They wonder if they could do it and I say "Well, what choice do I have?" and move on.
Those attributes come from the same place--the sheer force of my will that I will exert to make the world, my life, be what I need it to be. Except that's not how it works in my body. I've just been ignoring it, I haven't been changing it. I can't change it.
Nikole is a doctor. A surgeon. She is also the Chief Medical Officer at the organ procurement organization where I work. She is my friend and my colleague and we were pregnant with twins in neighboring offices at the same time--people joked that they didn't want to come to that side of the office for fear it was catching. We talk about all sorts of things--systems at work, marriage, food, boxing, life. We share meals, with or without our children in the background. Her wife Annie is also a doctor and also my friend. She opens her arms to me with a smile every time she sees me and the two of them make me feel so loved, so accepted, so taken care of, so valued. My gratitude is huge.
Why could I hear her when she named me? I don't know. She's certainly not the first person to say she worries about me, about my health. She's not even the first doctor friend to say so. But somehow because of who she is to me and how she said it and who she is in the world and also probably because she wasn't saying "And you must do this about it!" the words worked their way in and settled into my knowing of myself.
Medically fragile.
On June 11th Nikole and Annie hosted a birthday party for our four kids at their house. It was a team effort (I showed up, that was my role on the team) and it was completely wonderful and over-the-top. The night before the kids spent the night at Stephanie's and she and her family got them dressed up in new outfits, hair done, before taking them to the party.
I woke up and limped around the house because for some reason my left ankle and my right shoulder were aching. Quite a bit, actually. It felt like the day after a soccer tournament when the muscle aches and bruises coalesce and remind you of all the little body parts inside you that make motion possible. I'd taken my regular yoga class three nights before so maybe that was it? I took a bath with Epsom salts, drank some apple cider vinegar and a turmeric-almond milk latte to introduce inflammation my friend Maria had told me about. I lay on the couch reading and resting. I knew the best thing for me would be to miss the party and I also knew there was no way I was going to do that. I took some heavy-duty Ibuprofen and off I went.
The pain slowly increased as the day went on--I couldn't really lift anything or even raise my arms above my head. My knees were stiff. I slowly walked around, thinking and hoping that movement would loosen up my joints. I did a lot of sitting. It was a sweet, lovely day full of friends and happy kids and four of the most incredible birthday cakes I've ever seen.
Later that night after putting the kids to bed I laid down and took stock again. Everything was the same, my body still hurt a lot. And now my jaw hurt on the right side, to the point where I could only partially open my mouth. I got really scared.
"My jaw hurts now, " I texted Nikole. "Do I have meningitis?"
"No, but you need to see a doctor tomorrow," she wrote back.
Fuck.
Fast forward to the next morning and the series of phone calls and texts that I sent out to my care team, including my hepatologist Jennifer who is the main driver of the bus when it comes to my body these days and Bob the surgeon who transplanted me sixteen years ago who watches over me like a super-powerful guardian angel boss man.
Something is wrong. I don't know what. I feel terrible. What should I do and where should I go?
I recounted what had been going on with me lately, medically and personally. Jennifer took charge, trying to put the pieces together. A lab draw was the first step, to get the lay of the land. Everything in me told me that I needed to be in the hospital, based on fear and pain level and past experience. So even though she didn't say that, Stephanie drove me into San Francisco during rush hour traffic so I could start the process at CPMC, my safe place. My transplant center. The hub. She dropped me off and my sister took the baton, sitting with me in the same lab waiting room that I sat in every morning for a month and many times after that in the early post-transplant days. The pain was bad. The gastrointestinal symptoms were starting. I started a fever. As I waited to be called I texted Jennifer these latest updates. She was communicating with my GI doctor Nikhil. My sister was feeding me water.
Based on my verbal history and symptoms the light bulb had turned on and they were guessing that I was having an allergic reaction to the Remicaid infusion I'd gotten ten days before. It's a biologic--a medication made from antibodies grown in a lab that are infused into my body every two months to reduce inflammation and get my colitis into remission. It costs $13,000 every time and insurance partially covers it. Due to an insurance gap, some financial concerns and a few months of focusing primarily on my liver labs and what was going on there I had skipped a few treatments. When you do that and then re-introduce the medication into your body you can sometimes have a lupus-like reaction as your body says "Hey what's this crazy shit? We don't like this anymore". All my joints were inflamed because my super crazy powerful immune system was on attack. Which is what it does, especially under stress.
So even though the labs wouldn't be back for several hours, they felt pretty confident that was the problem. When the fever joined the fray Jennifer asked me to come up and see her after my blood draw.
Side note: I got my blood drawn and officially decided to end my unofficial social experiment when it comes to getting my blood drawn. I will no longer be gently suggesting that phlebotomists and nurses draw from the veins in my hands rather than the veins in my arms. No one listens. I will now be saying "You may not draw from my arms." We'll see how that goes. It happens the same every time--I tell them the veins in my arms don't draw, I watch them check out the veins and see the same thoughts pass behind their eyes--I can do it, they're right there, I'm going to try. And then they not only stick a needle in they then move it around inside my arm a couple times in an attempt to get into the scarred vein that's so close they can almost taste it. And then no blood comes out. Hello everyone. Welcome to my care team in which I am a vital part of the process and the owner of these arms. You do not get to decide anymore.
Blood finally drawn. Limped up to see Jennifer, rockstar mother of three young children, liver doctor and friend who always looks like a million bucks. She took one look at me and said "Oh."
She'd been initially concerned about my liver, because that's her main job and because I'd recently had a stent placed to drain a a stone out of my bile duct. She checked me out, confirmed no pain in my abdomen and asked what I wanted to do next. She could admit me so I could rest and not worry about the kids or anything else. Or she could send me home on a bunch of prednisone and pain killers, with the option of coming back to be admitted if I decided that was necessary. I chose Option B.
My sister loaded me up into her fast little car, after filling my prescriptions as I sat curled up in a chair in the lobby. The pain was very, very bad. She turned the seat heater on and the warmth, plus the first dose of pain meds, slowly sank in and gave me some relief.
As I write all this down I have to smirk in sad disbelief at how long it has taken me to truly see how fragile I am. I'm just so used to it. There's often even a strange comfort that comes when I'm in a medical crisis, because I know how to do it. I know how to be a patient.
My immune system is a super nova. When I am under threat, from the inside or the outside, it blasts everything in site--even my own self. It does this even though daily I take two medications to suppress my immune system. This is the cost of my force of will.
I have shown, over and over, that I can do almost anything. Survive fulminant liver failure when everyone around me thought I was going to die. Get pregnant when the doctors first told me I couldn't and then told me there was a less than 5% chance the IVF would work. Carry two sets of twins, post liver transplant and knee-deep in a three year colitis-flare. Work full time in a job it turns out I hated, even when I regularly had to walk quickly to the bathroom with diarrhea and regularly had to gentle rub my belly as the cramps surged through. Take care of four kids by myself some days and even occasionally make a good dinner while doing so.
I have refused to let my medical conditions determine my life. Straight refusal. Rolled my eyes when my mom asked me, over and over, to take it easy and be gentle on myself. Shrugged with modesty and a "whatever" whenever someone reacted with wide eyes to any one of my tales. It just is. What can I do about it? Just keep living.
But I think I will work on giving my tired, hard-working, traumatized body a break now. I will open my hands and let go of the false control that I've believed myself to be exerting over the world and relationships and circumstances around me. I will gently take my body's hand and lead her out of the forge where she has been working too much overtime for too long. I will not rely on the pills and my mind to hide the truth of what is happening in my cells.
I'm Megan and I'm medically fragile. I need special care. All help welcome.
Sunday, June 25, 2017
Pink sparkle boot
Many months ago, before the rains started so whenever that, I for some reason had only Lily and Cyrus with me and I took them to Nordstrom Rack. I don't know if we had a specific shopping goal in mind, I assume we did because otherwise I can think of no reason I would have taken them there. In our time shopping we came upon a selection of rain boots. They were stoked and I let them each pick a pair, feeling very ahead of the game since we already had boots that would fit the Littles. Cyrus got some grey ones with red and yellow monster trucks. Lily picked these pink glitter numbers.
The monster truck boots are still a favorite but the pink sparkles? Never worn because somehow only one pink sparkle boot ever made it to our house. Where is it's mate? In the store? The parking lot? A street somewhere? I weep.
This lone pink sparkle boot has meandered its way through various spots in the house, sometimes out of the way because I couldn't stand to look at it. Sometimes front and center to remind me to call Nordstrom Rack to see if perhaps they had the other one. Or if perhaps they would be willing to break up another pair and sell me or preferably give me its made-up match?
Months passed. I never called. The rains came. Lily never had boots that fit her. The pink sparkle boot, momentarily a symbol of my having my shit together and thereafter a symbol of all that is wrong with me and with motherhood and with kids' shoes and with consumerism and landfills and clutter.
I think it's a size 9 if anyone wants it.
Thursday, June 15, 2017
Bloom
Mercy, my well-named friend, sent me the link to a yoga studio. They have prenatal yoga, the text or email said. All details of the last four years are still and will probably remain extremely fuzzy. I don't remember when the link came, only that we were still living in Martinez, Lily and Cyrus were already out of my belly and both she and I must have been aware I was pregnant again hence the prenatal.
I'd gone to prenatal yoga once when I was very early in my first pregnancy. So early the teacher asked me if I was pregnant. I went on a women's retreat towards the end of that pregnant, although I didn't know how close to the early end I was. Belly huge and beautiful, body itchy, the women embraced me. I took tiny baby Lily to a mom and baby yoga class while Cyrus was still in the NICU. I just remembered that this instant. They had helpers there to hold the babies while you yoga-ed. I don't remember much about how my body felt but it was within two months of a c-section, I'd already gotten my period back and I was trying to breastfeed and pump.
Mercy took me to a mom and baby yoga class in Berkeley when Lily and Cyrus were a couple months old--I don't think I knew I was pregnant again yet. We went upstairs into a beautiful Victorian house, welcoming, smelling good, pillows and women everywhere. I was settled into the back room, tried to work out a good set-up in our stretch of blankets and pillows with both babies, stripped one of them naked in response to the instructions, and Cyrus started screaming his soul out. He did that all the time those days, for months. It sent me into a buzzed out, blind-staring, shut down panic. There was no key or pattern to get him to stop. I immediately felt trapped and like I needed to get the fuck out of there as soon as I could. But I couldn't figure out how.
I don't remember the details other than I must have left Lily in that room for a while so I could take Cyrus to the outer room, having to skulk through the middle room full of blissful-seeming moms and infants in their zones. After probably twenty minutes, though it could have been five or ten or one million of sweaty, miserable, shriek-filled huddled agony with my son the yoga teacher asked us to leave. We got kicked out of mom and baby yoga.
Fast forward to whatever day or month it was and Mercy sent me the information. They have prenatal yoga. It was a studio in Walnut Creek. I looked it up and saw that they also had daycare and a playroom with some open-play hours where you could bring your kids to hang out. One afternoon I packed us up to go sit in that playroom to see if it was a place Cyrus could get used to.
Bloom Retreat.
I have many words to write about it and they probably won't all come out for this essay. That first day I carried my two babies into the well-lit, colorful, full-of-options, welcoming yoga room that sometimes served as the playroom. I could try to describe what it was like walking into the beautiful place from the front door--the sweet, calm haven whose details I so admire now--but I doubt I noticed any of that then. Lily, Cyrus and I lay on the floor in the kid room and they took to it like water, especially once they realized I wasn't leaving them. They crawled around and checked things out. I rested.
I don't remember Michelle coming in but I'm sure she wasn't in the room with us when we first got there. I remember she was blond and pretty, artsy-looking. Serene-seeming. I don't remember if she asked me questions or if I just started talking. I do know that when she heard my cliff notes version, twins and more twins coming, she looked right at me and said
"You need to be here."
Michelle created Bloom Retreat as a way to give women space to learn how to take care of ourselves. The mission is clear in every aspect of the place--in the brick-and-mortar shell that houses the spirit. In the words written on the walls. In the check-ins before every class, each woman saying something about how she's doing in that moment or lately and everyone else nodding along in recognition at least once.
From Bloom I have been finding my way to myself for the past three and a half years. Back to my body in all it's injured, wounded, traumatized, tired holy glory. To the power inside me that I have almost never stepped into, out of fear or shyness. To the reminder of how necessary circles of women are to my pure survival, not to mention to my joy. To the comfort and relief of being surrounded by people who are curious about themselves and about their own healing, their own growth, their own hearts.
My body has been growing strong and I've felt the yoga move in me, change me. My muscles are stronger and even more than that my body is talking to me more and more because she knows I'm listening. I have so many teachers there--therapist, acupuncturist, yoga teachers, friends, classmates, nutritionist. I'm taking a class called Sacred Flow these days and I call it yoga church. Nicole, my teacher, is luminous and wise and the text we're studying before we move show me that all of this that I'm feeling and struggling with has always been here, 2000 years ago. Looked at. Wondered about. Learned. I am so seen there. So appreciated. Admired. Taken care of. Pushed. Loved. Celebrated.
Bloom. It has changed so much since my first visit. No more kid room, no more childcare. A revolutionary new way of doing and teaching yoga called The Practice that is part of changing the world. An Ultimate Women's Self-Care Retreat that was six months plus of hilarity and tears and community with eleven other women most of whom I hardly ever see but whom I love very much. A couple of whom are my deep soul sisters who will be with me for life.
Last week was one hell of a shitty, terrible, painful, scary week the details of which I will not be writing about here. One one of the days I saw Melissa, the worlds most perfect therapist for me, who works there. When I walked into the studio Michelle, the founder, was sitting behind the front desk with Elsa and someone else who works there, can't remember who at the moment. I hadn't seen Michelle in a long time, which is good because she used to be there all the time and now she's not which is an important switch for her. I mean, she's probably still there a lot. I don't live there so I can't say what her schedule is. I digress.
On my way to my car after my session we crossed paths again in the parking lot. I don't know who said what to whom but I started crying, in pain and in rage. She hugged me. She loved me. We talked about women and the power that is moving in so many of us right now. We smiled.
I called Bloom yesterday to find out what services were available to treat my sore, inflamed, stressed-out, super-power-not-always-with-gentle results immune-system situation. I didn't go into any details about what was going on with me. I'm having a really hard time, I said. Akiko at the front desk said:
You are held.
You are not alone.
You are one awesome, awesome woman. I've always been impressed by how you carry things.
I'm so glad you're calling.
Thank you for my life, Bloom. Thank you for this core of strength in me that runs like a river now and will only get stronger. Thank you to my partners there, all you women doing battle and dancing and holding on tight or letting go or all of the above.
If you're at all local, go there if you can. Find the money, make the time. You deserve it and you're worth it. Bloom Retreat
I'd gone to prenatal yoga once when I was very early in my first pregnancy. So early the teacher asked me if I was pregnant. I went on a women's retreat towards the end of that pregnant, although I didn't know how close to the early end I was. Belly huge and beautiful, body itchy, the women embraced me. I took tiny baby Lily to a mom and baby yoga class while Cyrus was still in the NICU. I just remembered that this instant. They had helpers there to hold the babies while you yoga-ed. I don't remember much about how my body felt but it was within two months of a c-section, I'd already gotten my period back and I was trying to breastfeed and pump.
Mercy took me to a mom and baby yoga class in Berkeley when Lily and Cyrus were a couple months old--I don't think I knew I was pregnant again yet. We went upstairs into a beautiful Victorian house, welcoming, smelling good, pillows and women everywhere. I was settled into the back room, tried to work out a good set-up in our stretch of blankets and pillows with both babies, stripped one of them naked in response to the instructions, and Cyrus started screaming his soul out. He did that all the time those days, for months. It sent me into a buzzed out, blind-staring, shut down panic. There was no key or pattern to get him to stop. I immediately felt trapped and like I needed to get the fuck out of there as soon as I could. But I couldn't figure out how.
I don't remember the details other than I must have left Lily in that room for a while so I could take Cyrus to the outer room, having to skulk through the middle room full of blissful-seeming moms and infants in their zones. After probably twenty minutes, though it could have been five or ten or one million of sweaty, miserable, shriek-filled huddled agony with my son the yoga teacher asked us to leave. We got kicked out of mom and baby yoga.
Fast forward to whatever day or month it was and Mercy sent me the information. They have prenatal yoga. It was a studio in Walnut Creek. I looked it up and saw that they also had daycare and a playroom with some open-play hours where you could bring your kids to hang out. One afternoon I packed us up to go sit in that playroom to see if it was a place Cyrus could get used to.
Bloom Retreat.
I have many words to write about it and they probably won't all come out for this essay. That first day I carried my two babies into the well-lit, colorful, full-of-options, welcoming yoga room that sometimes served as the playroom. I could try to describe what it was like walking into the beautiful place from the front door--the sweet, calm haven whose details I so admire now--but I doubt I noticed any of that then. Lily, Cyrus and I lay on the floor in the kid room and they took to it like water, especially once they realized I wasn't leaving them. They crawled around and checked things out. I rested.
I don't remember Michelle coming in but I'm sure she wasn't in the room with us when we first got there. I remember she was blond and pretty, artsy-looking. Serene-seeming. I don't remember if she asked me questions or if I just started talking. I do know that when she heard my cliff notes version, twins and more twins coming, she looked right at me and said
"You need to be here."
Michelle created Bloom Retreat as a way to give women space to learn how to take care of ourselves. The mission is clear in every aspect of the place--in the brick-and-mortar shell that houses the spirit. In the words written on the walls. In the check-ins before every class, each woman saying something about how she's doing in that moment or lately and everyone else nodding along in recognition at least once.
From Bloom I have been finding my way to myself for the past three and a half years. Back to my body in all it's injured, wounded, traumatized, tired holy glory. To the power inside me that I have almost never stepped into, out of fear or shyness. To the reminder of how necessary circles of women are to my pure survival, not to mention to my joy. To the comfort and relief of being surrounded by people who are curious about themselves and about their own healing, their own growth, their own hearts.
My body has been growing strong and I've felt the yoga move in me, change me. My muscles are stronger and even more than that my body is talking to me more and more because she knows I'm listening. I have so many teachers there--therapist, acupuncturist, yoga teachers, friends, classmates, nutritionist. I'm taking a class called Sacred Flow these days and I call it yoga church. Nicole, my teacher, is luminous and wise and the text we're studying before we move show me that all of this that I'm feeling and struggling with has always been here, 2000 years ago. Looked at. Wondered about. Learned. I am so seen there. So appreciated. Admired. Taken care of. Pushed. Loved. Celebrated.
Bloom. It has changed so much since my first visit. No more kid room, no more childcare. A revolutionary new way of doing and teaching yoga called The Practice that is part of changing the world. An Ultimate Women's Self-Care Retreat that was six months plus of hilarity and tears and community with eleven other women most of whom I hardly ever see but whom I love very much. A couple of whom are my deep soul sisters who will be with me for life.
Last week was one hell of a shitty, terrible, painful, scary week the details of which I will not be writing about here. One one of the days I saw Melissa, the worlds most perfect therapist for me, who works there. When I walked into the studio Michelle, the founder, was sitting behind the front desk with Elsa and someone else who works there, can't remember who at the moment. I hadn't seen Michelle in a long time, which is good because she used to be there all the time and now she's not which is an important switch for her. I mean, she's probably still there a lot. I don't live there so I can't say what her schedule is. I digress.
On my way to my car after my session we crossed paths again in the parking lot. I don't know who said what to whom but I started crying, in pain and in rage. She hugged me. She loved me. We talked about women and the power that is moving in so many of us right now. We smiled.
I called Bloom yesterday to find out what services were available to treat my sore, inflamed, stressed-out, super-power-not-always-with-gentle results immune-system situation. I didn't go into any details about what was going on with me. I'm having a really hard time, I said. Akiko at the front desk said:
You are held.
You are not alone.
You are one awesome, awesome woman. I've always been impressed by how you carry things.
I'm so glad you're calling.
Thank you for my life, Bloom. Thank you for this core of strength in me that runs like a river now and will only get stronger. Thank you to my partners there, all you women doing battle and dancing and holding on tight or letting go or all of the above.
If you're at all local, go there if you can. Find the money, make the time. You deserve it and you're worth it. Bloom Retreat
Sunday, June 11, 2017
Stephanie
Standing in line at the Walgreens near San Francisco General Hospital, pushing the double stroller filled with chubby five-month-old twins, I shyly pushed the pregnancy test down the conveyor belt. I didn't want anyone to notice; I was embarrassed. Please tell me that twin mama isn't pregnant again! I imagined people thinking.
I was desperate for the results, having already seen what looked like a positive result on an old test taken in our bathroom the night before. The signal was so faint that I thought it might not be real, even though it appeared immediately and was the first pregnancy test I'd ever taken to have done that. Where to find a bathroom in the city with two infants who would need to be carried with me? I parked the van not on a main street and in the back, holding a cup to catch my urine.
Positive.
Dazed.
A week or two later, laying back on the familiar hospital bed, the warm gel being smoothed over my still soft belly rounded from carrying two babies for almost thirty two weeks, I watched as the alien familiar internal moonscape spread out across the screen. My not-quite-medical eyes focused and counted. One. Two.
Twins again.
Shock is not enough. I haven't learned the word yet. The looks on people's faces when we tell them now. Yes, two sets of twins a year and two weeks apart. Dropped jaws. Gasps. Wide eyes. Terror. That is not an exaggeration. When you see people imaging what it would be like. Yes times a thousand. Together Neil and I fell separately into different versions of an unknown, inescapable place.
When we started telling people, everyone went quickly to the same questions. How will you do this? What kind of stroller? Who will help you? Everyone, without exception, said You Need Help. It took some months to even begin to be able to process let alone answer most of the questions. Blank stares. Numbness. Panic masked by blank faces. Oh yeah, and the two small babies who were with us all the time still needed looking after.
I knew we would need regular help but I couldn't even begin to imagine what that would look like. An au pair? Where would she live? How would we deal with someone else in our space all the time? A Nanny? 24/7? How would we know which hours of the day were going to be the hardest? How much would it cost? Could we afford it with me not working?
By the time I was into my fifth month of my second twin pregnancy in two years I was spending a lot of time laying on my side on the carpet of Lily and Cyrus' room, letting them crawl and roll and play around me as I tried to find some energy somewhere.
After trying one babysitter for a few hours and having her call me a couple hours into it asking me to come home because Cyrus wouldn't stop screaming, I went to Care.com and posted an ad. I don't have the exact wording anymore but it said something like:
I am pregnant with my second set of twins and I need help. My first two are nine months old, these next two are due in August. I think I'm looking for a mother's helper because I will be staying home with them as well. I don't know how many hours or days of the week I need. I live in Concord.
I got many replies, a surprising number. Here is the little that I knew--I didn't want someone older, grandparent age, because I didn't want someone telling me how I should be doing things. I didn't want someone younger, twenty-two or something, because I would be in the house with this person for many hours a day and I wanted someone I could relate to. There were a few responses that looked ok and many that got weeded out like an online dating experience--the misspellings, grammatical errors and text abbreviations were a no. Then there was one that said essentially:
I would love to help you! I know two families who have two sets of twins and they are amazing. . .
She knew people who had done this before? They were surviving? I don't remember anything else about what she said of her own experience. I asked her to come for an interview.
Stephanie.
She came and sat with me in the backyard next to the crumbling swimming pool. My in-laws were visiting. Neil was working on the pool. I have no idea where Lily and Cyrus were. I'd gotten recommendations of questions to ask from friends who had recently interviewed caregivers but I didn't ask any of them. I don't remember what we talked about. I liked her and we made a plan for her to come watch the kids sometime soon.
Cyrus at that time was in a screaming phase. Bone-shattering, heart-clutching, brain-freezing screaming. Not all the time but a lot of the time, triggered by a variety of things. Going into a new house. Being outside. Having too many people around. Life? It was unclear. I thought he might have some type of sensory-processing disorder. Often he would only be soothed by me. I told Stephanie all of this and told her I would stay with her the first few times so he could get used to her. Okay, she said.
She came the first day and the four of us sat on the floor in the babies' room for a while. Ten minutes. Then she looked at me and said "You can go. We'll be ok. I'll call you if I need to."
Oh. Well. Um. Ok.
So I left. Not sure what I did. I know he screamed and I know they were all fine. It took several days for him to stop screaming with her but not long. We had found our person.
More than a year ago I wrote a little profile of Stephanie when I was trying to write a description of someone or something every day for 100 days. It described what she looked like. It said nothing about who she is to us. What she is to us. I've thought often over the three years she's been in our lives about how I would describe this woman and the care and love and security she has brought into the utter chaos that is our lives. Here I am many paragraphs into an essay and I've hardly begun.
I called her after dark last week and she answered after two rings.
I need you, I said.
I'm on my way, she said.
I never, ever, ever worry about my kids when they are with her. I know they are the solid, confident little people they are now in large part because of how she loves them. How she loves us and how she holds us. She says what she thinks. She is fierce. My kids always know where they stand with her and they thrive because of that.
She arrives into chaos and cleans it up. Welcomes our children, unbathed, unshod, hair in tangles, underpants nowhere to be found. She tells us calmly and with certainty, go take some time to yourself. You need to be ok. That's the most important thing for you to do right now. I've got them.
She more than anyone else knows what these past three years have been for us. The days and weeks and months in the shock. Trying to recover. Blinking our eyes in confusion and disbelief as we look around at the lives that somehow have become ours. She's watched as we've fallen apart, fought through and tried to survive the misery and despair that bracket the incredible love we feel for these huge personalities we created and live with. She is our family and I will never stop being grateful for and to her.
Three years in, the reactions from people are the same. You have your hands full! I don't know how you do it!
Stephanie. That's how we do it.
I was desperate for the results, having already seen what looked like a positive result on an old test taken in our bathroom the night before. The signal was so faint that I thought it might not be real, even though it appeared immediately and was the first pregnancy test I'd ever taken to have done that. Where to find a bathroom in the city with two infants who would need to be carried with me? I parked the van not on a main street and in the back, holding a cup to catch my urine.
Positive.
Dazed.
A week or two later, laying back on the familiar hospital bed, the warm gel being smoothed over my still soft belly rounded from carrying two babies for almost thirty two weeks, I watched as the alien familiar internal moonscape spread out across the screen. My not-quite-medical eyes focused and counted. One. Two.
Twins again.
Shock is not enough. I haven't learned the word yet. The looks on people's faces when we tell them now. Yes, two sets of twins a year and two weeks apart. Dropped jaws. Gasps. Wide eyes. Terror. That is not an exaggeration. When you see people imaging what it would be like. Yes times a thousand. Together Neil and I fell separately into different versions of an unknown, inescapable place.
When we started telling people, everyone went quickly to the same questions. How will you do this? What kind of stroller? Who will help you? Everyone, without exception, said You Need Help. It took some months to even begin to be able to process let alone answer most of the questions. Blank stares. Numbness. Panic masked by blank faces. Oh yeah, and the two small babies who were with us all the time still needed looking after.
I knew we would need regular help but I couldn't even begin to imagine what that would look like. An au pair? Where would she live? How would we deal with someone else in our space all the time? A Nanny? 24/7? How would we know which hours of the day were going to be the hardest? How much would it cost? Could we afford it with me not working?
By the time I was into my fifth month of my second twin pregnancy in two years I was spending a lot of time laying on my side on the carpet of Lily and Cyrus' room, letting them crawl and roll and play around me as I tried to find some energy somewhere.
After trying one babysitter for a few hours and having her call me a couple hours into it asking me to come home because Cyrus wouldn't stop screaming, I went to Care.com and posted an ad. I don't have the exact wording anymore but it said something like:
I am pregnant with my second set of twins and I need help. My first two are nine months old, these next two are due in August. I think I'm looking for a mother's helper because I will be staying home with them as well. I don't know how many hours or days of the week I need. I live in Concord.
I got many replies, a surprising number. Here is the little that I knew--I didn't want someone older, grandparent age, because I didn't want someone telling me how I should be doing things. I didn't want someone younger, twenty-two or something, because I would be in the house with this person for many hours a day and I wanted someone I could relate to. There were a few responses that looked ok and many that got weeded out like an online dating experience--the misspellings, grammatical errors and text abbreviations were a no. Then there was one that said essentially:
I would love to help you! I know two families who have two sets of twins and they are amazing. . .
She knew people who had done this before? They were surviving? I don't remember anything else about what she said of her own experience. I asked her to come for an interview.
Stephanie.
She came and sat with me in the backyard next to the crumbling swimming pool. My in-laws were visiting. Neil was working on the pool. I have no idea where Lily and Cyrus were. I'd gotten recommendations of questions to ask from friends who had recently interviewed caregivers but I didn't ask any of them. I don't remember what we talked about. I liked her and we made a plan for her to come watch the kids sometime soon.
Cyrus at that time was in a screaming phase. Bone-shattering, heart-clutching, brain-freezing screaming. Not all the time but a lot of the time, triggered by a variety of things. Going into a new house. Being outside. Having too many people around. Life? It was unclear. I thought he might have some type of sensory-processing disorder. Often he would only be soothed by me. I told Stephanie all of this and told her I would stay with her the first few times so he could get used to her. Okay, she said.
She came the first day and the four of us sat on the floor in the babies' room for a while. Ten minutes. Then she looked at me and said "You can go. We'll be ok. I'll call you if I need to."
Oh. Well. Um. Ok.
So I left. Not sure what I did. I know he screamed and I know they were all fine. It took several days for him to stop screaming with her but not long. We had found our person.
More than a year ago I wrote a little profile of Stephanie when I was trying to write a description of someone or something every day for 100 days. It described what she looked like. It said nothing about who she is to us. What she is to us. I've thought often over the three years she's been in our lives about how I would describe this woman and the care and love and security she has brought into the utter chaos that is our lives. Here I am many paragraphs into an essay and I've hardly begun.
I called her after dark last week and she answered after two rings.
I need you, I said.
I'm on my way, she said.
I never, ever, ever worry about my kids when they are with her. I know they are the solid, confident little people they are now in large part because of how she loves them. How she loves us and how she holds us. She says what she thinks. She is fierce. My kids always know where they stand with her and they thrive because of that.
She arrives into chaos and cleans it up. Welcomes our children, unbathed, unshod, hair in tangles, underpants nowhere to be found. She tells us calmly and with certainty, go take some time to yourself. You need to be ok. That's the most important thing for you to do right now. I've got them.
She more than anyone else knows what these past three years have been for us. The days and weeks and months in the shock. Trying to recover. Blinking our eyes in confusion and disbelief as we look around at the lives that somehow have become ours. She's watched as we've fallen apart, fought through and tried to survive the misery and despair that bracket the incredible love we feel for these huge personalities we created and live with. She is our family and I will never stop being grateful for and to her.
Three years in, the reactions from people are the same. You have your hands full! I don't know how you do it!
Stephanie. That's how we do it.
Thursday, June 8, 2017
Birthdays
A guest post written by my mother--professional storyteller, empath and one of the greatest letter-writers of all time. Written on June 1, 2017--the day before her 67th birthday.
That first hit when the triangle of billiard balls go every which way. A scattering with some dropping right into a corner.
I have always felt the birthing day of each of you three as the date arrives. This time, I am seeing/feeling you at this time four years ago and, another ball, my mother in hospital being told she had a tape worm when I was born.
I wonder if you are remembering itching all over and not being able to find any position for very long that was okay by you? I wonder if you remember those two babies on the floor in the bathroom while you took a shower?
Then there is my mother waiting for you to be born, for Martha to be born, while she was 3000 miles away. How in the hell did she do that? She was here for Ira's birth and left the memory for you and Martha of the nutmeg on toast day.
I recall a few things from that time. She and I walked together on the path of the Great Highway and she was panting to keep up. I was huge. Off your father and I went to hospital leaving her here in the dark of night only to return in the morning from false labor. At that time Irina (our upstairs neighbor's daughter) had already been born and was still in the NICU. Tom and my mother talked through the kitchen window through those waiting days for Ira. He was due July 21.
Aunt Bobby was still alive and my mother told me after all was accomplished that Ira's birthing day was the most frightening of her WHOLE LIFE. She called her sister for support. That still stuns me. And then she flew to DC. How did she do that? What her heart bore for this distant mothering? Maybe it was always acceptance, except for that line above about "most frightening". Me too. I get it.
Like me, leaving you in Martinez with Lily and Cyrus with this mixture of confidence in you and Neil and a deep desire to make it easier. Always that.
When I had my first adult storytelling performance at Sunset, maybe 1986 or 87, a woman in the audience said. "Mental health is knowing what story you are in." That made me laugh at the time, but as I write with memory of being born, of birthing, and of waiting for a birthing, I wonder if reality is sometimes actually impossible to absorb. Time and distance bring up emotions that were too much at the time. Just doing it. Just getting through was all that could be managed. I don't know.
I get it when people constantly call you a hero. How exhausting that must be to hear. I get that too. But I don't know the words for the scope of what has happened in you, for you, to you, in only four years. Nor, actually, for my life as witness and mother and grandmother. Which, I suppose, may be why I feel so much in my body on the eve of my birthday and nearly the eve of your first birthing day.
I love you. I am so grateful for the gift of life and the courage it takes to give birth.
Mama
Olive Hackett-Shaughnessy, Storyteller
http://www.olivestoryteller.com/
Dear Megan.
A slight change in the word " birthday" to "birthingday" is playing my mind this morning sort of like a game of pool.
I look at Cyrus and Lily for who they are now, but sometimes, due to a photo on FB or my computer I look again at the beginning days. And that is what I am in now. You pregnant and huge and so uncomfortable. Before we met them.
Lots of silence in my house these last few days. Me deep inside myself with all of these billiard balls shooting around the pool table of my mind and heart. Can that be a metaphor for loving my mother, my first born daughter and my grandchildren and how so many of these connections are felt at the same time?
And last. You and my mother share birthing twins. I actually never ever felt that truth until today.
Mama
Olive Hackett-Shaughnessy, Storyteller
http://www.olivestoryteller.com/
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