A 24 hour snapshot into the life of this single mom

I didn’t start crying until Maya demanded to know when I was going to return the three quarters I took from her piggy bank.

Let me start from the beginning. First text of the morning, from my property manager, showing me a photo of a water leak spreading on the first floor ceiling. One that indicates the drywall will have to be replaced, and the source of the leak is not known. This is my sister’s house. I visited the empty lot before it was built when I was 13. I spent many many hours there, happily with my sister. I took care of her husband, cleaning up his blood when he was busy dying with cancer and she was already dead. I carried her son up and down the stairs and up and down and down and up ad nauseam. I completely fell apart there, ripped through the seams when my brother in law told me about the last hours of my sister’s life there. It is a beautiful, two story, log cabin style home, full of love and memories and bitter sadness. Now it is mine to run. This past year has been problem after problem with it. Evicting non paying tenants, other plumbing problems, and in general issues that have cost a lot to repair and causing extra work. So the last thing I wanted, was to see proof that yet another problem had arisen. I texted the appropriate responses, contacted my dearest, oldest friend for her help. In so many ways I am surrounded by people that I don’t know what I would do without. How do I do this. How can I fix it. How do I cope.

In the meanwhile, my mother has lost her purse. I feel guilt for not making it to her house in December. I tried flying to her, twice. Once I sat on a plane at the gate for about 2 hours while they repaired a part, knowing damn well I was going to miss my connection even though I asked repeatedly to be taken off the flight should that eventuality occur. I ended up in Phoenix, with no guaranteed seat, anywhere remotely close to Norfolk. So I returned home. They lost my bag, which went on the trip I was supposed to go on, but returned four days later while I never reached past Phoenix. I’m doing everything I can to follow her wishes. This part is hard. She tells me not to neglect my family in order to help her. We have a lot of history and a lot of troubled water under that bridge. I’m still trying to help her. When I made myself get up that second morning, to go on a trip I just knew in my heart wasn’t going happen, I told myself if I were nearing the end of my life, I would want Maya to come see me. To see her face. Not knowing how many more visits, days, or months or years we would have left together. It’s not my fault Mom lost her purse, yet I am consumed by worry someone has gotten her cards and used them. So I do the only logical thing. I lock myself out of our bank because I can’t remember the password, and it’s an east coast organization meaning I can’t call to fix the lock out, cancel her card or make sure her account is secure for another 12 hours. She asks me how will she handle her finances if I cancel her card. I gently remind her that without her card, she can’t handle her finances. I write all her checks now anyway. But I don’t remind her of that. Trying to preserve her dignity.

I’m trying to get Dmitri into a new program. Hoping we can curb some of the more difficult intellectual disability behaviors to try and expand his potential more. The doctors are always so enthusiastic to push you off on a new phone number, a new program, and to let you let a light of hope in. Until you call and call and call that number and discover there is a 1,600 person wait list. I have a mountain of paperwork to fill out before the appointment. I pick up the packet, and set it down again, multiple times, with my mind on my sister’s house, my mom’s lost wallet, the fact that my landlord can’t find the check I’ve already sent, the Virginia house paperwork I have to fill out that day, the Dmitri guardianship paperwork I have to fill out that day, the important bill I have to mail on behalf of my mom, instead trying to clear my mind enough to focus on “having fun” by spending my day with Maya at Disney, because I want to see one of my oldest friends and her family. I don’t fill out the paperwork, maybe tomorrow it will be easier to do. Maybe I can face that I will fill out the pages and pages and we’ll be told we’re on a new, shinier wait list, while I fret and worry about how to raise this young, disabled, man into manhood.

After a great day, and a visit that I enjoyed very much, I get a text about the neighborhood lice situation. Maya has it. I (sort of, mostly) hold it together. Dmitri and I don’t have it. I start the cleaning process. I’m 75 cents short for all of the loads of laundry. I scrounge around the house until I find three quarters. Working, working to comb her and treat her and treat myself and ensure D is free of it (thank god he is, with his fragile immune system). I’m itching all over, haven’t had hives regularly since I left my marriage. I wish the psychosomatic itching would stop, already. I start the arduous, manual labor of cleaning and combing, and the humiliating labor of contacting the mothers of anyone we’ve played with in the past two weeks to share the painful news that my child has lice and I am so sorry, but please check your kid. With many, many apologies.

I take out the trash, do the dishes, the mountain of preventative lice laundry. Maya cries because I try to teach her the lesson that it can’t always be about you and sometimes you have to wait for Mama’s help because Mama is working. My heart hurts. I don’t hit her or surround her by people that tell her women should be covered in long skirts, without earrings and makeup in order to truly love the lord, that women are valued less, and belong in the home, with less worth than men. And yet I wonder if she will come out of childhood feeling about me the way I felt about my mother, and that if I’m like my mom and my memory goes, will she help me like I help my mother, and call me every day, and worry and visit and do all of the things that I have done for someone who caused me so much pain and strife in my own life. Dmitri goes to school in a pair of swim trunks the next morning and I am too tired to fight and bargain and threaten to take away his music to get him to wear regular clothes, so I just let him. Everyone gets a shower and their nails cut. Except me. Sometimes it’s not always about me and sometimes I have to wait.

On most days I’m proud of all I do and all I’ve accomplished and how I successfully navigate being a single parent and handled the challenges. Some days Maya asks for her goddamn 75 cents, the only payment I’ll receive for the barely moveable mountain of work lice will cause me to do, and I’ll feel like that’s all? That’s all it’s worth? Seventy five cents? And then I’ll cry, a lot, until it makes other people uncomfortable and I’ll tell myself, Sometimes it’s not always about me. And sometimes I have to wait.

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Radiohead now and 20 years ago

Generally I try to avoid “why me” in dealing with the intricacies of life because it’s simply not productive. Recently I began going through my sister’s artwork in an effort to find a painting. When I saw how neatly everything was organized, and the sheer volume of it I became immediately and thoroughly unglued. Her organization and thinking was in such stark contrast to mine. Just as her life was. In many ways we walked the same path, independent of our parents choices. Vegetarians, for a time. Masters degrees. Both married to successful men with PhDs. Artists. Mothers. Caregivers. Weirdos.

I think it was when I opened up her art supplies that I fell apart. Touching them. Looking at them. The impact someone leaves behind when they leave you too fucking soon.

It made me think of the last time I allowed myself a “why me” moment. Twenty years ago this year Tristan and I were headed to a Radiohead concert at the Black Cat in DC. The next day we had plans to attend the HFStival. We must have left after work because I was tired and let Tristan drive my car and man, that was a shitty car in the history of shitty cars. But when you leave home at 17 and become completely financially independent from your parents you do things like work two shitty jobs at a time and drive a Mitsubishi Mirage Hatchback that is inevitably a total piece of garbage. Anyway, Tristan commonly lacking in common sense found us lost, clueless, in a really bad neighborhood with him at the helm, and then me forcing him to ask through a bulletproof window how to get the hell out of where we were. Frustrated with his lack of direction, our lack of progress, his inability to sense danger, I canceled our trip further into the bowels of DC. The next day was going to be a long day anyway (and it was).

Currently I’m planning to see Radiohead in 2017 and this time I’m not going to get lost in a bad neighborhood on the way to the show. Tristan and I didn’t last much longer after that concert. I was 19 in 1996, and although I walked a different, more rebellious path than my parents, somehow I thought I was going to be like them. I thought it was perfectly reasonable for me to find myself a 51 year long relationship like they had. Even though much of the time they were really, truly terrible for each other. I remember laying in the dark with Tristan, in our living room. We had just watched “Play Misty for Me.” Which is a deeply unromantic movie. I mean, I can’t think of many movies that are an immediate turn off like that one. So anyway that seemed like the perfect time to ask him if he thought I was his soulmate. His answer cut me deeply. (Aside, if you ever want to know what it’s like to be cut to the bone, date an artist.) “No.” “NO.” He didn’t believe in soulmates. So then I said, trying to recover, well, Tristan, when we’re forty, let’s have an affair. Together. We laughed it off, but life continued and he did what artists do which is cheat on you in your own home that you had together and completely disassemble your heart. If you want someone to cut your heart to ribbons and then set it on fire and then send those ashes to space, love an artist.

He used to draw/journal daily in a Stillman & Birn. After he stopped coming home from work at the end of our relationship, I stepped over whatever decency that was stopping me from looking inside his journal for the year and a half we were together previous. Because I knew the relationship was ending. I saw the drawing of another woman. And then another drawing of her. And another. And another. And I knew that was that. We argued about it, me screaming and screeching like a hysterical banshee, him denying it, calling her a fucking bitch. But I caught them at home, him locking himself in his studio. The strangest part was somehow it was all my fault? I never could understand it.

Obviously we weren’t soulmates. Almost laughable now. But even 20 years later, he hurt me in a place I’ve not let anyone see or touch. The type of hurt I experienced, I don’t even know how to explain. On how our mutual friends would come to my parents house to check in on me because they were concerned, where I was cooling my heels until I found a roommate. How I’d sit on the front porch with various guy friends and sob my guts out. And how they’d awkwardly hug me, uncertain and nervous and worried. How my mom would come out and see the physical manifestation of a stoner archetype and death metal addict hugging me, and because he was wearing a grubby t shirt with tombstones on it that said “Testament” she decided he was a good boy. “That Joe is a good boy, you should hang out with him more.” Joe thought he was going to scrape up the bits of me that were left after Tristan blew my life apart, for himself. I declined.

I spent so many hours on that front porch, at night. Night after night. Wrestling with another friend, knocking off and breaking one of the large flower pots. Almost getting myself into deep trouble the next morning when my mom uttered “Your father was going to call the police because of the pot on the lawn.” Silent just long enough to realize she meant the broken flower pot and not pot, pot. Remembering the story of how she was going to call the cops on my brother, her own son, for a little pot, until my father came home from work and diffused the situation. I spent that summer living dangerously, skinny-dipping in lakes. Eating at truck stops. Going to drive-in movies. There was so much crying. Crying in the shower. Crying at work. Crying in the car. Crying while walking. Crying in bed, newly alone.

An artist is really never done hurting you. Somehow in their search for truth and beauty your heart becomes theirs and they have no qualms in crushing it, just to see what happens next. Twenty years ago, we broke up in the most horrible of ways. Eighteen years ago he died. Drowned in Crater Lake. We will never have any affairs now that I’m forty. We won’t see Radiohead, this year or any year. He’s long gone and still breaking hearts.

My last “why me” was about 6 or 8 months after he died. His cousin, who I had remained friendly with called me at the restaurant where I worked. That restaurant was THE place that taught me what good food tastes like. The clientele was upscale, the interior was upscale, the food. The chef was previously sous chef at the Watergate, working 100 hour workweeks after his formal training. I was surrounded by good food and I made good money. My mom stepped foot in that restaurant to initiate our reconciliation after I stopped speaking to her for four months because of a really terrible decision she made. I learned about wine and heard the word sommelier for the first time at that restaurant. Beurre blanc. Muffuletta. Asiago. Ciabatta. Pinot Noir. Cab Sauvignon. Syrah. I developed taste there.

So months after Tristan died his cousin called me to find out if Tristan’s cat, Pluto, the evil black cat that would scratch my tender legs in the middle of the night as I haunted the hallway on the way to our bathroom, had had his rabies shot. Because Pluto had bitten Scott and had caused a red streaking infection it was either find out who Pluto’s vet was to confirm rabies vaccination on record, or put Pluto down for tests. As that was the only way to ensure Scott didn’t require the comprehensive, painful, unpleasant rabies treatment regimen, I told him which vet. I knew Pluto was vaccinated. But, crying at work, I wondered, why me. Why am I the one who has to answer that question. And now, all these years later, looking through my dead sister’s art, I wonder, why am I the one that has to do this. Why is it me, cleaning up the pieces of my broken heart. Why do artists hurt. Why do they leave us. Why do they cause us this terrible pain.

The Universe has no answer.

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29 December 2016

I was going to write about what it felt like to look through Miriam’s artwork (I was looking for a specific piece, and it was hell). Or about how the props and sets from Flash Gordon were repurposed in Dune. But I think my Mac just gave up the ghost. So instead I’ll put some videos here I took this year. Do you think they’ll all autoplay at once? Because that won’t be annoying at all. I’m going to go hide in a blanket fort for the next four years. Bye now.


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Quiet time

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This is a unicorn hot chocolate THIS IS A UNICORN HOT CHOCOLATE, PEOPLE

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Maya's artistic process

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Swamp cotton fields

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Night ya'll

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Watching the sets roll in

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In flight

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Shearing time

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Ladybugs get a room #ladybugs #blackeyedsusan #crows

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Take me to my happy place

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Before sunrise on the Queen Mary #cunard

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Gratitude ’16

It’s nearing the end of the year and I want to look back on the things I’m grateful for in 2016.

A hug from my daughter
A hug from my son
The sound of wind in the trees
My freedom
Watching birds take flight
Watching birds in the water
My community
The other mothers at my son’s school, who are a great source of support, tears and laughter
My friends
My family
The people I’ve met along the way during some really challenging times this past year
My martial arts family
Eating terrific food
A cozy place to call my own

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Freedom ’16

The best thing I did in 2016 is to stop living my life for my parents, my sister, my ancestors, and everyone else who had an opinion on what I should do to fucking make them happy and begin living my life for myself. I’ve spent a lot of time over the past three years running. Running on treadmills. Beaches. City Streets. Off the beaten path, sandy pathways. Always away from the burden of pleasing everyone and in the end sitting there by myself, alone and unsatisfied. Sweating, hurting, crying, trying. Eventually I decided I would quit and learn to stand my ground.

There’s a lot of freedom when you quit. It feels like stepping over the side of a bridge to say no. I feel the swirling energy of power around me, telling me, say yes. Just say yes. But I say no. No. Then I wait for the world to crumble. For buildings to fall in on themselves, the streets to open up and be swallowed whole by the earth. Trees hurtling themselves into the ocean. But the strangest thing is, it never does. No such calamities occur and no one dies because I say no. No one suffers irreparable harm. I don’t die when I say no. There is no impending anvil hanging over my head waiting for me to just say “no” so it can be released. Death’s scythe is not standing nearby just waiting to destroy me for that forthcoming irreverent “no.” There is no darkness and foreboding in no. No death. No punishment. No harm.

Each time I say no I get a little stronger. Each time I say no I protect that fragile beam of happiness inside myself. It’s taken me so long to find it. So many risks, so much work, so much sacrifice. Doing all the things I did not want to do. But here we are. And I have that little beam and I will fight you for it. I’ll stand my ground. I won’t run. You can judge me. Hate me. Hit me. Hurt me. Try to take away from me. You can try those things. But my answer is pretty simple and straightforward.


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My (not so) little (anymore) zen master

I was under a lot of pressure after my sister and brother in law died and I became guardian of my nephew Dmitri in 2011. According to his current school psychologist he was suffering from institutionalized autism as well as being born with Trisomy 21, Down Syndrome. He was and remains non verbal. He wouldn’t make a single request for anything. When I say that, I mean, he was 9 years old, an orphan, moving from Virginia to California and lacked the skills to tell me what he’d like for lunch. He couldn’t focus. I’d watch him peep out of the corner of his eye at his TV for approximately five seconds. He wouldn’t follow instructions. He wouldn’t make eye contact. He was trapped in his own little world.

So I began to nurture this beautiful little child, the only precious remainder of my sister, my best friend, the one person on Earth who really knew and loved me. Mainly it involved picking him up when he would defiantly plop himself on the ground, which was a common occurrence. It wasn’t until years later that I realized that many, many individuals with intellectual disability do this. I guess when you can’t talk, it’s your only way to say “I really do not want to do this, and also fuck you.” (Maybe the fuck you is only for some circumstances, who can say). There were doctors appointments, school interviews, phone call after phone call, guardian ad litem, court, lawyers, health insurance, school transcripts, medical transcripts, prescription medications. God when I think of the sheer scope of all of that on top of handling my sisters estate and probate, plus my own family and successful business I can’t really understand how I did it all.

But something about Dmitri changed my heart in a radical way. I sat looking at him, rocking back and forth, humming, totally cut off from the rest of the world and I had this daring thought.

I thought, if I can love this imperfect child, why in the fuck can’t I love myself.

And so began a journey. Basically what I taught him to do, I taught myself to do. I’m not sure there has been any other experience in my life where I have had so much to learn from one person. On Dmitri’s very first IEP, of which I knew NOTHING, my request was simple. Teach my child to express his needs and wants. Well that’s pretty high reaching for an adult woman who can’t even feel her own feelings, much less express my needs and wants but that was and remains my goal for Dmitri. And myself.

We would frequently go out to eat at a kid friendly restaurant with menus for children that had photos of the food beside the names. For two years, we would go a couple of times a month as a family. We’d sit down, me beside Dmitri, Maya and Mike across from us in the booth and I’d show him the menu. Over and over again we’d go through this process. It was so rote that I didn’t even think about it anymore. We’d take our seats, they’d hand us the kid menu, I’d prop it up so he could see it, I’d ask him do you want Chicken nuggets, and point to the photo. In two years, I’d say averaging approximately 48 visits he never responded. I never thought he would respond. And yet, I wouldn’t give up on him. I couldn’t give up on him. But. Finally, he did respond. When he was 11, after being asked time and time and TIME again he did respond. He picked up his pointer finger of his left hand and he tapped the photo for chicken nuggets. Jesus Christ, he’s actually in there. AND HE LIKES CHICKEN NUGGETS.

When Ric was busy dying and I was shuttling them both back and forth to chemo/oncology or therapy Dmitri had this one truly awful, mean spirited, pregnant speech therapist. He didn’t like her (and I can certainly understand why). So when she would ask him to complete a one step task, ANY one step task, he would distract and upset her by grabbing her name badge and pulling, or taking the small book and throwing it on the floor. I sat through these sessions, quietly, watching him. I had no authority over his life at this point because his father was still alive but everyone knew I was going to become his guardian and care for him. The speech therapist looked at me and said I shouldn’t bother and it would be easier for everyone if I just went ahead and institutionalized him.

If you want to piss me right the fuck off, go ahead and tell me something I’m trying to do is impossible. She’s lucky that Ric was still alive and I didn’t have the full authority to really show her what this angry southern woman looks like. I politely gathered our stuff and got the fuck out of there as quickly as possible, horrified by what she had said.

He completes three step tasks easily now. I decided at some point if he was ever going to use an assistive device to communicate I’d start by getting him to use i electronics. He did the thing where he’d gaze at the idevice out of the corner of his eye and quickly move on to the next thing. I tried over and over and over again, similar to the kids menu. I’d show him my iPhone. He’d look at it and walk away or push it away. Ad nauseam. One day we were on a field trip at the bowling alley. I had been snapping photos of him all morning. I decided to try a selfie, so I leaned forward and captured both of us in frame. Then I had a thought, what if I handed it to him in selfie mode, would he touch it? I’ll be damned, I put the phone in his hands with the camera reversed and he didn’t bat it away. He didn’t get up to do something else. He saw himself. HE SAW HIMSELF and started touching the phone. Finally I knew it was possible to get him to use an assistive device because he sat there playing with it, unprompted for a long period of time.

Now he points when he wants something. Or bugs you until he gets what he needs. He’s not reluctant to share what his needs are, through his sign language approximations, pointing at an object or physically retrieving the object to let you know what he wants. He’s regressed a little on iPad communication but still uses it to say hi and bye and to regularly know he intends on seeing Mike. When he gets into Mike’s car he queues up the restaurant he would like for dinner. “I would like Wendy’s please” when he gets into the car. He uses the iPad differently with different people because any person interacts with different people a little differently. He points at balloons (I want a balloon, goddamn you). He points at apple juice (GIVE ME THIS APPLE JUICE NOW OR ELSE). He hovers in front of you until you fix his Netflix so he can watch Reservoir Dogs. He is relentless until he gets what he wants.

The last two years in the IEP meetings they tell me things like “you saved his life. No one else on earth believed in him but you” and “you provided an environment for him that caused these successes” and “you changed the course of his life.” We went from a professional opinion of “he belongs in an institution” to “he can have a job one day.” Watching him learn and grow and leave the protective shell of non communication gave me the courage to communicate as well. If this precious, beautiful, non communicating child can express his needs and wants then so can I. I watch him push himself to do things that make him uncomfortable every single day for progress. So I can push myself to do the things that make me uncomfortable every single day, for progress. I watch him immerse himself in the moment into absolute bliss. I can try to do that too. He is my teacher and my zen master, my child, and my sister’s child. He teaches me humility, perseverance, strength, patience, courage, empathy, self love, the ability to show the world exactly who I am, without shame. He is everything and I am so thankful for these lessons and our life together.

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The bravest, strongest, wisest man I’ve ever known

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I am so incredibly thankful for my family. A close family member sent me this article from 1985 today, otherwise it would have been lost to me forever. My dad has been gone since 2007 and I haven’t read his words since I found parts of one of his sermons in his bible after he died. But this. He wasn’t just courageous. He was courage. He was strength. He was kindness. He was wisdom. I watched him struggle and struggle and struggle with depression and I knew it was bad enough where he wanted to take his own life. But he didn’t. He raised me and provided a great comfort to others for the remainder of his days instead. I never remember a man who had a great ego. I remember a kind man who was a stay at home parent taking me to the park and the library to read whatever I wanted, uncensored. I remember him being my protector and my shield against difficult times. I remember very well his first mental breakdown although I had only just turned four. I knew the dark sides of him as well as the light.

I used to spend a lot of time wondering if I would be like him and wondering if when I reached his age I would experience a mental break. Well shit, I am like him and proud of it. But so far I’ve managed to hang onto my sanity despite a lot of difficult situations in my life. I think he’d be proud of me. I think of him and what he would do in any given situation, often. The other day it occurred to me that if he hadn’t gotten ill when I was a child I would have grown up in the church, moving every couple of years to a new place, constricted by that lifestyle. Instead I had an idyllic childhood on a bucolic hundred acre farm, living like we came from money without the burden of actually having it. I had art. Books. Water. Mountains. Gardens. I had everything. I used to spend a lot of time upset that I didn’t have the same upbringing as everyone else but if I had I think my life would have provided considerably less adventure, less risk taking and less living.

The fact that he suffered so was terrible. But it was also beautiful. He inspired many people throughout the course of his life, but especially me. I love you dad. I remember your struggle. I honor it. And you.

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Man enough to wear a funny hat

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He wears funny hats

He sits with me when I meditate, sometimes only a few moments at a time. Then leaving like a butterfly taking flight.

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He runs and leaps and mirrors us during the most ferocious, martial, dragon slaying form of dat ma kiem. Fearlessly.

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He interrupts important soccer games, because he knows he can get away with it, and he likes the sound of my angry voice. (He does not like the sound of my angry, southern voice).

And I am never alone.

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Too much thinking

My sister and I used to joke that we were going to move to France when we were 85 and live in a tiny village town together, going down to the local pretend village for food with little baskets in our pretend future and maybe have a couple of pretend cats despite my allergy. Neither one of us speak fluently, but that’s neither here nor there. Up until the time she died I always had this sensation that we would grow old together, the two of us. Free of life’s concerns save for what we’ll walk down to the village and purchase to make dinner. She died in January of 2011, four months after her husband was diagnosed with terminal cancer. I had just come off of the worst pneumonia/upper respiratory infection I’ve had as an adult and the doctor prescribed me the pediatric dose of xanax to help counter the effects of my albuterol.

I remember screaming when my brother in law told me she had died. The night leading up to her death I kept mumbling wordless prayers even though I’m an atheist. Mainly it went like “don’t take her, because of her son. please don’t take her. he needs her, I need her. but her son. don’t take her. please. you can’t take her. her son. her son. her son.” Then there were all her hospital transfers and sheriff escorts because of course she would pick the shittiest snow storm of the year to fucking die of pneumonia at 45 years of age. My childhood best friend’s father was working on her during one of her emergency surgeries. One of my oldest friends was working as a nurse at the hospital during that time. I hoped that these connections to me mattered since these people knew me and she and I looked so much alike, maybe if they saw her and thought about me they would work harder and save her life. I sat at home that night she died pondering questions like, the sky has opened up and it’s snowing and I can’t get there for three days and how will I get a pair of winter boots?” While she was fighting for her life I was wondering what I was going to put on my feet. She lost.

I wondered if my best friend’s dad looked at Miriam thinking she looked like me. I wondered if he stood there over her, looking at his own hands. He saw me as a patient when I was young, for my respiratory problems. I can’t imagine he knew that he would one day care for my sister as she died from hers. I wondered if that hurt him. Cut him. Pained him. Troubled him. Followed him that he couldn’t save her. No one could.

Ric called at about 4am. Deep down, I already knew she was dead. I knew around 11pm. Somehow I could just fucking tell that the universe had taken the person I share the most genetic material with, who I look like, who mothered me, who thought nothing was ever good enough for me, who fought for me, who understood me. We had more shared experiences than with anyone else on earth, especially now that I’m raising her son. As I age and look in the mirror I catch a glimpse of myself out of the corner of my eye and I gasp because I look just like her.

My wailing lasted for what seemed like forever. My brother in law sat on the other side of the phone, tired, busy dying with cancer. Impatient to deal with my bullshit, no doubt, but I had just found out my sister died and this primal screaming came from a place I never knew existed. It lasted long enough to wake up my husband and my daughter and for my mind to say “who is screaming.” And why is this screaming lasting for so long. I’m pretty sure I fell down in that hallway. Dmitri and Ric were with her at the hospital witnessing god knows how many horrors. Perforated bowls, military grade respirators, emergency surgeries. ARDS. Sepsis. The medical professionals kept performing cpr on her so her husband and child could come into her room and say goodbye. I’m pretty sure I felt her ribs break, all the way in California.

I had had this intense fear of flying when I began flying commercially in 2000. It was all the usual bullshit, sweaty palms, upset stomach, the urge to run from each gate where I sat shitting myself with the opposite of anticipation. My first flight, I was headed to San Diego to work in Sally Ride’s UCSD Earthkam lab for the summer as part of a research experience for undergraduates. My sister and my mom came to the gate with me and sent me off, back in the days where you could walk someone to the gate even if you weren’t traveling. Miriam snapped a photo of my worried face before I boarded the airplane. I flew many many times through my fear. I would look at the comfortable little old ladies in the seats beside me with panic on my face as we did a totally normal bank. Or clutch the armrests with fear during turbulence, sweating. Miriam would tell me regularly, you had better just get used to flying because you’re going to need to fly for your career. So I did my best to do what she said. Eventually after enough traveling I could make myself go and experience mostly mild panic and anxiety.

That all changed after she died. Fortunately I had had that bad bout of upper respiratory infection and I had this sweet bottle of pediatric doses of xanax. Being anxiety prone I cut those in half because I had anxiety about taking anxiety pills. There was no way I could board that airplane home to her, dead, without that xanax. The first week she died I took a whole pill each day. The day we went up to the house (now my house) and Ric told me it was his fault I wanted to physically crawl out of my skin. If I had had the means to exit my body during those moments, I would have. I couldn’t bear to be in the house. I had this fear I would catch whatever killed her. I was afraid to touch her glasses. Her notebook. Her pen. I sat in her room where she convalesced until she died of fucking pneumonia, shaking, wondering if I would catch it and die next. That day he told me it was his fault I should have taken two xanax, but I didn’t. Instead I quietly lost my shit and we went back to the hotel where my three year old and her dad played in the snow.

I kept telling myself if it were me and Mike was dying she would do what I did. But how could she ever know I would take care of her husband while he was cancering his way to the grave. That I would take him to oncology appointments and Dmitri to therapy appointments and feed them and clean up after them and spend time with them. The worst was when I would drive her truck with Ric in the passenger on those back mountain roads, creeping along at 5 miles per hour and the cancer was in his bones and every bump and crevasse would send pain through his body. Or maybe the worst was when his heart was troubling him and he didn’t tell me and we’d have to go to the ER and sit for hours. No the worst was when he dropped a pain pill in his favorite leather chair and he thought Dmitri maybe ate it and they had to go to the ER to see (Dmitri didn’t take it, in fact). Or maybe the worst was when Dmitri ran to his father’s room to give him a pain filled hug because we all knew where this was going as I stood in Dmitri’s room, silently watching. Until I said “it’s okay.” Ric angrily, furiously, manically yelled at me “IT’S NEVER GOING TO BE OKAY.” For a while I thought the worst was when I walked into the house that May and when Dmitri laid eyes on me, and saw how much I looked like his mother without actually being his mother, he hauled ass up up to his room to cower in the corner, sobbing like a small, helpless kitten. Listening from downstairs to Ric asking him “Why are you crying, Bud?” “Why are you behind your bicycle over there? Come over here” cut me in the deepest of places. I stood on the porch, shaking, with the wind burning the exposed parts of my body because my face, something I had no control over, hurt this little, precious child who had already experienced a lifetime of hurt, ten lifetimes of hurt, a hundred and seventeen thousand lifetimes of hurt. I hurt him simply by existing. I got the fuck out of there as quickly as I could, worried I would hurt him even more. I remember the rental car tires skidding on the rocks at the bottom of the driveway as I hauled ass right the fuck out of there.

I spent a large portion of the following summer laying in her bed, in her room reading book after book every night, finding the one corner in the house where I could download these books and standing there fiddling with my blackberry to ensure I never went without something to read, trying to find a way to live with taking care of her husband and her child. There was a lot of panic of how the fuck was I going to parent a disabled child. Right after Ric died, using the only currency I could think of, I would take D to McDonalds for some chicken nuggets. He was so fragile and angry and hurt. I remember him screaming loudly, defiantly, red faced, refusing to get into my sister’s truck, and I was thinking “someone is going to think I am kidnapping this child and call the police on us.” Fortunately no one did. I sat in Ric’s pain pill chair slowly going through his bills and paperwork, with my inhaler nearby because every surface in that house and every paper was covered in goddamn cocksucking cat hair. Settling an estate is no easy business. Being 34, when you don’t know shit, and settling your sister and your brother in law’s estate and taking on the lifetime care of a child with down syndrome and autism is staggering. Mindblowing. Mind altering. I just sat there, in his chair, in his room, in front of his tv with both of them gone, having left me with this looking at paper after endless paper trying to piece together my life. Maybe I can weave my life together with 10,000 sheets of paper that don’t mean much of anything after you die. I don’t know.

It emptied me. It emptied me all out. I would carry Dmitri up and down the stairs like an automaton and sometimes maybe a martinet, he weighed 65 squirmy pounds. The stairs had a landing halfway through. Right away I told Ric I didn’t like making Dmitri do things because it made him cry and then that made me cry. Ric very firmly commanded me in his official navy voice that he and Miriam and discussed it and they had decided that Dmitri had to be forced to do the things he was required to do and that I had better sign up for this fucking program or else. I sat there with tears in my eyes and a broken heart, hurting. Okay. Okay. I will make him do the things he is expected to do even though it makes us both cry. Dmitri would struggle out of the clothes I would put on him each morning. He would refuse to go downstairs to eat breakfast so he could go to school, each morning. Like his parents wanted him to do. So I did it all, even though it meant carrying him up and down and up and down and down and up. He would sit on the ground spontaneously. Sometimes in crosswalks with oncoming cars. Many times in parking lots. I got proficient at picking him up. Sometimes I would calculate how many pounds I had lifted that day after the reading but before I drifted off to sleep. Sometimes it was 650 pounds. Sometimes it was 1100. I would make his oatmeal in the quiet mornings to the sound of the oak trees using the dishes I had given my sister when I left everything behind and moved out west, listening to the steady hum of her kitchen appliances. What was I doing in her house taking care of her son. This was her job.

The trees up there on that quiet mountain sound like the water when the wind blows. I would sit in her room looking out her window into the yard at the deer. I would wake up in the mornings when the ground was dusted in snow and see the animal tracks leading up to the back porch. There were a rash of black bears that year and we lived in the mountains and one of my favorite women on Ric’s side of the family said, when the black bear comes up to the house, kill it with one of Ric’s guns and then tell the sheriff you were just shooting “at” the bear and you didn’t mean to kill it.

Ric loved to antagonize me by telling me he was the only member of the NRA AND Greenpeace. This election cycle has made me appreciate the second amendment for the first time. I’m planning on going shooting soon. He antagonized Miriam with it too. She hated having guns in the house. I gave both guns and the gun safe to a family member. I got to do that since everything in the house now belonged to me, including a very angry and hurt little boy.

2010 had been a very fruitful creative year for me. I was sewing, spinning, knitting, taking photos, growing my business. I finished my thesis and finally received my masters degree in physics. I went on a couple of terrific business trips. I met new people. I got so sick with that respiratory gig I remember laying in bed thinking my heart was beating too fast. I ended up with a steroid shot, xanax, a zpac eating pho at every meal until I finally, finally felt better. I spent a fair amount of time remembering how hard it was to breathe, since my sister drowned in her own pneumonia. I spent a fair amount of time thinking about the sound of my visceral screaming. I spent a lot of time thinking.

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Meditation hurts

A video posted by fickleknitter (@fickleknitter) on

No one told me meditation hurts. But it does. Your feet fall asleep. Maybe it makes your butt hurt or your hip. It makes the middle of my back ache depending on where I put my hands. The main part that hurts in the beginning is your heart and your mind. If you’ve been disconnected from yourself or your feelings or have felt numb for any length of time and you start meditating, your body has a lot to tell you and most of it you won’t enjoy hearing. But it has many benefits. If you start meditating you’ll have a lot more insight. And eventually you’ll be able to deep breathe your way through some difficult shit. But you’ll still get angry and yell at people and act like a dick because you’re still a person. Meditation can’t and won’t cure being a cocksucker. Probably you’re stuck with that one for life. But maybe meditation can help you accept the fact that you’re a cocksucker and deal with the other cocksuckers out there. So that seems like a pretty good thing.

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