The following missive addresses some of the difficulties life has thrown my way in the past 15 months. If you have lost a loved one to cancer or lost a sibling, or are an overly empathetic person you may consider reading this during a time when you can be alone, or not reading it at all. It’s been months in the making and I’m afraid I’ve been shirking writing, really writing because of my inability to let go of my grief. I felt it important to be strong for my family and for my new family and how ever stupid it may have been I felt as if I couldn’t focus on my own pain.
But at some point the inevitable cavalcade of dark feelings must come out and I’m hoping I’ll heal over, even just a little from the capricious blows of fate. So readers, read on with caution, knowing that I’m addressing the unaddressed and some memories that are quite painful.
Why I’m compelled to let this out when things are finally starting to reach normal and I no longer feel like a zombie making my solitary way in the zombie apocalypse I will never understand. If you’ve seen me at a show and I looked stressed, or sad, or concerned, or with a stiff drink in my hand, now you know why.
Thanks to everyone in my life who has been good to me this year, and to those who have been understanding and compassionate I thank you from the bottom of my broken heart. To those who didn’t extend those courtesies, I don’t really think any different of you. I know most people have absolutely no idea what to say to offer comfort. You don’t really have to say anything. You can hold my hand, hug me, and buy me a drink when I cry. Mainly I want to be treated as a normal person and I’m hoping that getting this out will help me with having to constantly recount what’s happened.
Years ago when I started knitting it was to help cope with the grief of my Father in Law’s terminal cancer diagnosis. And when I started knitting I started writing as a way to honor my own father who I always admired and respected. In October 2010 the terminal diagnosis for my Brother in Law came from the heavens, like an axe on his head. The very next day I had a show in Tehachapi, so I packed up my gear and put on a happy face although I was dying inside. I was reluctant to seek out comfort in the online knitting community because I wanted to respect Ric’s privacy and I had no idea what he had told his job. I couldn’t forgive myself if I put his job in jeopardy so I kept things very quiet. I spoke with my sister on the phone a few times weekly even though I preferred daily, for a few hours each week. Having lived through losing my father in law to cancer I had an inkling of what was ahead of Miriam in regards to Ric’s health. Perhaps the most unjust part of terminal cancer is grieving your loved one twice, the first after diagnosis and the second of course after their battle is won or lost as the case may be. From my experiences I believe that terminal cancer patients really want and need to be treated as a normal human beings and talk about something other than their illness, and be loved for who they were before the world came crashing down.
It’s hard for me to put into words what my brother in law meant to me. As you may know I am a physicist. Ric was the first hard scientist that I met. I was 13 and watching him make his journey through E school at University of Cincinnati and make a life with my sister Miriam. So in my formative years he was a role model for me, and we were a lot alike. Slackers, performing well below our potential until we set our minds upon a goal. During this time my own Father was very ill and Miriam and Ric took me on weekends all over Northern Virginia. They took me to every museum at the Smithsonian, Wineries, Art Festivals, Oktoberfest and Wine and Jazz when I was old enough.
They singlehandedly showed me that there was life and potential to see my dreams even after growing up in a mostly stifling small town atmosphere. So in his own way, Ric was a brother to me over and above the traditional brother in law relationship. He showed me that life didn’t dictate our station, that I had the ability to change my place as an automaton stuck in lower middle class slavery. And that most importantly my future was not dictated by my past failures or inadequacies.
Meanwhile, returning to 2010 I sat and cried with my sister weekly, for hours intercontinentally, talking about what in the hell she was going to do after. I did my best to comfort her, checking in on her as often as I could while trying not to overwhelm her. She was absolutely devastated. Her pain was indescribable at the thought of losing her mate of 21 years. Her pain was my pain. We were very distraught that her son should lose his father and selfishly and righteously angry to lose Ric ourselves. I listened as she made plans to return to New Mexico where she could oversee treatment of her son and a system that would be more friendly to handicapped persons in adulthood.
Then in January my world stopped. I spoke with my Sister and she was feeling unwell. When I nagged her about it she said she was fine and reassured me that she was okay taking care of Dmitri and Ric and herself. She sent me her beautiful photography over email as usual and though I was unable to reach her on the phone I assumed things really were okay.
Things were not okay.
In fact she was as sick as a person could possibly be but no one knew it. For a time the roles reversed Ric was working furiously to take care of her and Dmitri despite his own illness. And finally she couldn’t go on.
I got a call from Ric Thursday the 27th of January. He was calm and reassuring in the face of horror. Miriam had been taken by ambulance to the local Emergency Room for a high fever and pneumonia. I told him about the lung treatments I was aware of from my own issues with asthma and we chatted for a bit. I got off the phone and booked a flight out to Dulles because, dammit, I was going to be there when she woke up and give her hell for getting so sick on us. Only she didn’t wake up. Her condition continued to deteriorate as I sat helpless in California and wondering what in the fuck was going on.
And Ric called at about 4:30 that morning to tell me my sister had passed away at the too young age of 45. We weren’t really clear what had happened but she had had an exceptionally high fever of 105 degrees and bilateral pneumonia, compromising 90% of her lung capacity.
I haven’t written before about what happened because frankly it’s been too painful to share publicly all that transpired. I guess I’m afraid if I start writing about just how crucial and important my sister was to me my whole self would evaporate in a black hole of deep emotion. And frankly some days even without writing I still feel like a zombified soul with one foot in the abyss.
My sister Miriam was 11 years older than me and anyone who has a big sister can understand the depth of our relationship. She was my maternal figure and did everything first so I could do it later. We’re both first generation college students and I watched with a practiced eye while she worked her ass off at community college, then university, and finally her masters degree. My sister bewitched me. There was no one who could do something better than my sister. Even when she was fucking up she did it in a memorable and remarkable way. She was such an integral part of my own person and my sense of self that having her die was like helplessly witnessing half my body float away in the devestation of the worst tempest of my life. I felt her loss and still do on a deeply molecular level. It was like being struck in two, with no hope of reclamation.
My whole life screeched to a halt and I was fucking becalmed, in the middle of California, 3000 miles from home and my sister had the indecency to up and die from pneumonia without so much as a hi, how the hell are you.
The night my sister died all I could do is scream and wail and wonder just what was going to happen to her baby. Ric’s diagnosis was already hanging over our heads like a poorly timed acme anvil. It was just too much to know that this child that had had a continuous outpouring of love from his parents was going to go from a loving home to a stark reality where he was orphaned at the age of nine. And that’s not even touching his disabilities, and the fact that he doesn’t speak. We can only guess what he thinks about all of this because with his autism he is unable to tell us directly.
Ric, being the best micromanager I’ve ever met in my life fixed up things so that he was able to function, rather heroically if you ask me. I flew out to Virginia again in May to talk with him about our game plan and his untimely impending exit to stage fucking left. He asked me to take Dmitri. I said yes without hesitation. Leaving them to go back to California was one of the bitterest memories of my life.
During this time I kept what was going on to a limited number of people because of Ric’s privacy. I was grieving the life changing loss of my sister, the prostate cancer slowly killing my brother in law, and terrified by the major changes ahead created by bringing a severly disabled child into my family.
It was a difficult few months. I naively held on to the hope that all these debilitating cancer treatments would cure the incurable, and that Dmitri wouldn’t lose both of his parents in less than the span of a year. I wanted to pretend my sister didn’t die, that she didn’t suffer, that her son didn’t wonder where she went, and that life hadn’t befuddled me to the point of catatonia.
Then Ric got sicker so I flew out and spent the next six to seven weeks caring for him as his health declined and learning how to interact with my nephew. It was extremely difficult at first. Dmitri is a very strong willed child and with the constant flow of well meaning people in his life he didn’t really know who he had to listen to and who he didn’t. Ric and I had a conversation about the inevitability of requiring Dmitri to do things he didn’t like to do, which I didn’t like to do because seeing that boy cry after all he had been through made me feel like the world’s worst human being. In the end Ric expressed that it was personally important that Dmitri meet his obligations, and if that meant forcing him to get dressed when he didn’t care to, that meant I had to do it. We had many struggles during that time as I was keeping up Ric’s house, taking him to the oncologist and all the other “ists”, learning Dmitri’s preferences and a lot of his dislikes, missing my own family terribly, missing knitting shows, and who knows what else.
Eventually it was time for me to return home. Ric had rallied a bit and Dmitri started 4th grade and I had shows that I felt I couldn’t miss. It was a short 5 weeks, I did a whirlwind of shows, hosted a Knit Along, pushed new patterns out the door, and my own first book. But like all good things there was an ending in my sightline. Ric’s health took a turn. I booked a trip out to aid in his care so that he could have his final wish and die in his mountain house. He died the night before I was scheduled to fly home.
Thanks to some amazing family and friends Ricci was able to have his wish, and Dmitri was lovingly cared for until I arrived in Virginia with my family. We spent the next month going to court to establish custody, moving and emptying Ric and Miriam’s home of their possessions from the last 20 years (if only I had known, I could have called hoarders!), and watching Dmitri with fear and trepidation, full of worry because of all that the pain he has known in his short life. Finally it was time to return to California and I can say without a doubt it was the worst flight of my life. Dmitri was crying because he couldn’t sit by the window (which was quickly remedied) and he couldn’t understand why we had to take away his favorite electronic toy during take off. I am sitting here today and telling you unapologetically that I cried hysterically too. I couldn’t bear to see him so uncomfortable and distraught. I was very concerned the flight was a harbinger of what was to come. Thank god I was wrong.
I’ve spent many sleepless nights worrying how incorporating another human being into my family would affect Mike and Maya. Would they still know that I love them? Had I brought some one into the house that would tear us apart? Would Maya know that she was still my baby even when I couldn’t give her 100% of my attention when she needed it? Would Mike blame me for the rest of my life for having a sister who died after her husband was all set to die from cancer? Would Dmitri adjust to two new authority figures? How would he do in school? Would people be understanding when they spoke to him and he didn’t speak back?
The answer to most of these fears is, I have an extraordinarily overactive imagination. Of course we have our ups and downs and Mike and I are learning to parent two children instead of one. And just because someone doesn’t speak verbally doesn’t mean you won’t learn their nonverbal cues. And sometimes a good hug will cure a lot of evils in life.
Dmitri is attending a wonderfully awesome, indescribably incredible school that is for special needs children. I had to wait interminably long 9 days, go through a tour and an interview after bringing him home to get him enrolled but it was worth every moment of angst. Dmitri gets loved on by his teachers, has daily access to a sensory room, gets to play outside on the swings, is working with innovative and breakthrough communication technology in the classroom.
Maya is doing well. She has returned to the loving embrace of her preschool where she continues to astound her teachers by reading well above her age level. She now makes two of every activity, to bring home one for Dmitri, and looks forward to watching Popeye with her new cousin-sibling in the evenings after school. Of course kids being kids they do get jealous of each other. Bath night is a bitch. They take each others toys. They vie for parental attention. Sometimes Mike and I yell but we give them everything we can and of utmost important love.
Mike is doing great. He’s working too hard as always. He’s stepping up and learning to care for Dmitri and we talk regularly about advocating for Dmitri and Maya as well. He takes them together to the park, we take turns making breakfast, administering parental justice (“That’s his toy, give it back please. Now.”) and even manage to have a moment or two to ourselves occasionally.
So there is normalcy after adversity, life after death, calm after storm. A happy ending? I don’t know, I just live here.
I knew this morning when Dmitri gave me a long extended hug after not fighting me to get dressed for picture day (thank you jesus) that I had some writing to do. I’ll close with the word that Dmitri has been saying over and over again. Since coming to California he’s been working so hard to speak. And he’s saying Mama, Mom, and Mommy. I just hug him tight and let him see my tears.