On Grieving

Mr. Boy died shortly after I posted a short list of his advice for me on November 20th.  Other losses have also touched me since Mr. Boy's death.  A mentor lost a father-in-law, a friend lost a father, Superman Sam whose story helped give me and Mr. Boy strength died, Peter O'Toole's death made news, and, of course, the world lost one of the most incredible humans ever when Nelson Mandela died.  With each loss, I thought I was in a place where my heart could not break more, but it seems as though compassion is unending.

I'd like to write something profound about Mr. Boy, but I think it's too soon for that.  I've been staring at a blank page for days trying to put something together for the service which will be Saturday.  But, as a trusted rabbi shared with me, there are no words.  Human language is not meant to describe grief.  We mourners are not meant to fit people, relationships, and pain into grammatical structures.  We are meant to learn how to hold the joy of love and caring and the pain of loss and absence together.  We are meant to refuse comfort, to be comforted, and to seek comfort from others (not necessarily in that order).  I am meant to reconcile the loss of my partner with the fact that I yet live.  That feeling my grief will be a part of my life in many different ways as I continue to live despite that I feel like my world has stopped.  To live with grief is to expand notions of family and community to include those who are not present.  To live with grief is to live radically - to participate in an ongoing revolution of reimagining life not based on what we planned but based on where we are.

Welcome to the last days - #FuckCancer

Yesterday Mr. Boy had unexplained pain.  When you have cancer, the doctors tell you what should hurt, and how much, and to tell them if your pain is not typical.  So he did.  And after tests, they saw that despite the aggressive chemotherapy, his cancer spread to his lungs.  In a "normal patient," they would advise continuing the chemo for the full cycle, as the full cycle is perhaps necessary for any effectiveness, but with an HIV+ patient with a very low CD4 count, it's too stressful on the body to continue the treatment.

What happens now is that the cancer will replicate, filling Mr. Boy's lungs until he can no longer breathe.  Without intervention, he may also suffer renal failure.  Mr. Boy does not want drastic measures, so the care he is receiving now is purely palliative.  The doctors say he has less than a week

I am in Toronto to be with Mr. Boy.  He's currently quoting Shakespeare, clearly using the time he has breath for its most exalted purpose.  He has to stop every few minutes to catch his breath.  I'm trying to be present, to enjoy the Shakespeare, to enjoy him before he's gone.

Drawing Strength from the Hardest Moments - #FuckCancer

Mr. Boy had methotrexate injected into his spinal column today, one element of his chemotherapy.  That process is painful and he'll be sore for a few days.  We're getting used to the routine of him being in cancer treatment.  We Skype before the doctors round on the patients, because after that, his day in the hospital is full of constant interruptions.  Sometimes we talk later, but we don't have deep conversations after 8AM.

It's hard to find the kind of support we're looking for.  Most support for cancer patients and their families focuses on hope.  What's important is that you have a positive attitude, there's a chance you could beat it, you could be one of the lucky ones if you just try hard enough.  What's important is that you think you have a chance you could survive.

Mr. Boy's cancer is such that the best hope is that he may survive for a little while longer and retain some quality of life, two years is a coin toss, five would be incredible - not good news for a thirty-one year old.  Our spiritual focus has been coming to terms with his death while trying to stay in the moment and enjoy whatever time we have.  The support focused on grief and loss seems altogether inadequate.  Not to say that it doesn't help, but grief is hard, and it takes time.  It takes time to let go of happily ever after, to let go of the possibility of children, to let go of dreams.  And incessant talk of death distracts from today.  Without knowing what Mr. Boy's quality of life after chemo will be, it's hard to make bucket list plans or even regular plans.  Taking joy in the now is

But we are finding strength from people who are share about their hardest moment facing terminal cancer.  People who have been told similar things that we have been told, or further along when the doctors tell them there is nothing more they can do.  One of the strongest stories that we grab on to is that of Superman Sam and his family.  A part of my extended camp community, Sam is an eight-year-old with AML now out of treatment options.  His parents blog at http://supermansamuel.blogspot.com about the experience of dealing with his cancer.  I've followed their story for a while, and Mr. Boy furiously caught up with it after his diagnosis.  We're members of Team Superman Sam, and we thank the Sommer family for sharing what's real about their experiences on a daily basis.  Sam is in our prayers, and we think he's incredible.  We hope he fills his remaining time with joy and love.  Mr. Boy hopes to do the same with his.

Visiting Mr. Boy

So Mr. Boy has been quite sick for quite sometime, and we found out not too long ago that he has Stage IV cancer.  He went to Toronto, where he grew up, for treatment.  And so I find myself here visiting him.  The chemotherapy is making his body weak and his mind tired.  He has no energy, can't eat right now, and the pain he's in is visible on his face.  This is depsite the medications they give along with the chemo to make him comfortable.

When I crack a joke, he tries to smile, but I can tell he's not amused.  Today, they're running some tests to see how effective his treatment is so far, one week in.  And I'm leaving to go back to Chicago, which breaks my heart because I want him to be here and I can see the sadness in his face that I can't stay longer right now.  He'll be here for three months.

Marrying Mr. Boy

Mr. Boy dislikes science fiction.  He insists that Québecois is real French.  When he is involved in a project, he focuses on that to the exclusion of everything around him and his own self care.  He goes to Northwestern.  He's shy to the extent that it limits his social interactions.  He claims there are parts of his life I will never understand because I'm not a twin, and then doesn't explain them.

That's a short list of what I see as his shortcomings, to underscore that I know he has them.  That said, we're getting married, which still seems unreal after two days of being "true".  I feel blessed to have him in my life, and I'm looking forward to being married, and we're taking wedding planning one step at a time.

Unanswered questions

I've been trying to write a post about remembering my love and I don't know what to write.  Do I write that I am still devastated by her loss on a daily basis?  Do I write that I'm terrified that Mr. Boy will meet the same demise she did?  Do I write that thirteen years is long enough for someone to become responsible, and I can see it in her fourteen-year-old brother?  Do I write that I wanted to escape, because I still don't want to deal with her loss?  Do I write that I'm conflicted as I start to let go and move forward?  Do I write about how weird I feel in the moments when I notice how similar Mr. Boy is to her?  Do I write that this is the hardest year yet?  Do I write that I feel lost without her even as I find direction in my life?

The Stuff I Find it Hard to Talk About: Shame, Stigma, Privacy, and Calculated Vulnerability

On Saturday, Mr. Boy checked himself into a psychiatric hospital because part of him wanted to kill himself while part of him did not.  He checked himself in voluntarily and without persuasion from any other person.  At some point, he stopped taking his medications, and taking them helps him stay healthy.  He is exactly where he needs to be to get better.

I'm a big proponent of self care.  Steps we take to ensure our health and well-being are both good and necessary, and when the step we have to take to do that is putting ourselves in a situation where we can't harm ourselves, we should not be afraid to do so.  Yet, we are ashamed when we take this step to protect our lives.  We feel like worthless failures for ending up in a position of vulnerability we cannot control.  I have been on Mr. Boy's side of this equation.  When the best thing I could do to survive was ask for help, I felt broken - not because I wanted to die (that felt normal at the time) but because I needed help not to.  The physicality of living is an unconscious process.  When it becomes conscious, we feel broken.  Despite the modern understanding of such brokenness as illness, we feel it as shame.

So Mr. Boy feels ashamed that he "let himself get to the point" of needing to take this step.  I'm grateful that he's taking this step rather than killing himself.  But I'm also ashamed.  I'm ashamed that the strength of his life and our relationship is not enough to give him reasons to live, even as I know that it's not about that, and if it were, any reasons for him to stay alive need to be internal to him.

I find myself talking around Mr. Boy's illness.  My boyfriend, I say, is in the hospital.  They're monitoring him; he'll be ok.  I told my parents he was in the hospital, but refused to answer questions about why or where.  They were supportive of me when I ended up in psych wards, but somehow it feels like my failure that Mr. Boy ended up in one.  I told them he's likely to be in the hospital for a few weeks, which is true, but have not elaborated.

With people I am not quite so close to, I find myself worried about how they'll judge Mr. Boy or me if they find out he has a mental illness.  The stigma surrounding mental illness is real and often unconscious.  I have no way to predict how my friends and coworkers will react.  In addition, there's a part of me that views this as a private matter.  It's something that is nobody else's business.  Most of my friends still do not yet know Mr. Boy, so they have no investment in the situation other than how it affects me.  And I feel like it shouldn't affect me.  Mr. Boy is sick, and is getting medical attention.  There's nothing else to say, and there's nothing to worry about it.

But it affects me.  I feel like part of me that is in relationship with him is on hiatus because he can't respond to me with a sparkle in his eye.  I feel sad that my dearheart wants to kill himself because I see how valuable he is in the world and it hurts that he doesn't see it.  I feel torn as I place my commitments to my job and my own self care such that I can't go see him every day (the hospital has very limited visiting hours).  I feel shut down as I put my worries over his well-being aside to get through my day.  I feel that my love for him is being strengthened by this experience and grateful to be able to pray about it honestly.  I feel lonely, like no one has ever been through what I've been through even as I reach out to people I know have been in my situation.  I feel distracted from the joys and sorrows of my friends and the world because my thoughts, when not focused on work are focused on him.  I feel amazed that I can care that way about another person.  I feel angry that he has to go through this.  I feel honored that I have become close enough to him that he wants to see me even though he feels broken.  I feel overwhelmed by all of this.  I feel vulnerable, and not the calculated vulnerability that I can use to be an effective organizer, but scared, vulnerable, and squishy (I'm looking to see if anyone has a pointy stick).  I feel like the person I would go to to help me deal with this is absent, but that what I want to be able to do is curl up in his arms and cry.  I feel like I can't express this in my daily interactions.  I find myself directing the shaming anti-sissy rhetoric that my flaming boy disdains at myself.  I tell myself to man up or butch up, that crying is something I need to wait until I'm home alone to do, that it's not ok to feel less than happy or fulfilled, that I need to pretend that everything is fine, and I need to protect myself from the inference that I am weak.

And it's hard to talk about.  Even with the select few people I've reached out to, it's hard to say what I mean.  I don't even know that I've managed to here, but at least I tried.

Because I don't know how to close this with my own words, here are Rainer Maria Rilke's, as translated by Stephen Mitchell:

I am, O Anxious One.  Don't you hear my voice
surging forth with all my earthly feelings
They yearn so high that they have sprouted wings
and whitely fly in circles around your face.
My soul, dressed in silence, rises up
and stands alone before you: can't you see?
Don't you know that my prayer is growing ripe
upon your vision, as upon a tree?

If you are the dreamer, I am what you dream.
But when you want to wake, I am your wish,
and I grow strong with all magnificence
and turn myself into a star's vast silence
above the strange and distant city, Time.

Blogging again

The last few posts I wrote had been in the works for a long time.  I am hoping that a new more flexible schedule will help me post on a more regular basis.  Let's see, major life updates: seeing someone extremely special whose codenames include Mr. Train Man, Mr. Boy, B^2, Mac, and dearheart.  So look out for those.  I'm about to move, which is exciting, except for the part where I don't yet know whereto.  I am working for an amazing start-up, a job that after one week I love.  Other than that, life has the same charms and challenges as usual.

Memory

Memory is a funny thing, and I feel like I've been stuck in it all day.  Memories of my love have been swirling around me and popping up, and her brother asked me when I was going to stop being weird.  I was hanging out with some friends today to avoid spending all day alone in my apartment, and one was talking about James Taylor, so I mentioned that our song was "You Can Close Your Eyes."  I remembered her singing it to me for so long before I picked up on why she was doing it.  When I realized it, I felt stupid.

When today has been too much for me, I've tried visualizing the Beit Teva at Tzofim at OSRUI in my head.  It is the place I sought refuge at camp whenever I needed to.  I'm trying to see myself sitting on a stump surrounded by woods, with fewer mosquitos, of course.  And trying to get to that refuge in my head has helped when I feel like I need to escape.

Update about an Alexander week

This past week has been difficult for me.  I was confronted with open unapologetic transphobia and the lack of ability of some I considered friends to check it.  I also had to face my inability to speak up for myself when hate was directed at me.  I had a strong ally who spoke for in that situation, but I worried that these friends were complicit in the hate.  The conversation was painful for both of us.

This week as well, I've seen people from within and without the queer community dismiss a friend's queer identity as invalid or at best a choice.  And I have seen this friend's pain because of that and I am angry on her behalf.

I also had a moment yesterday where I realized I was taking a paskn from Rabbi Arnold Jacob Wolf in order to be an ally and as weird as it was to be cognizant of living Reform Jewish law, it was powerful for me to live into that experience.  Reform Jews are so good about talking about choice and occasionally good about talking about ethical sensibility, but we are horrible at talking about laws and obligations.  Sometimes we not only find actions compelling, but we are compelled to certain action.  I hope to be able to devote a post to this soon.

Just a plug

Plugging my friend JK's excellent blog Cat Flight of Fancy in honor of unexpectedly running into him at lunch yesterday.

Indepence Day

I narrowly avoided an argument with my roommate yesterday. The ginkgo girl moved out in the middle of June and one of my other friends moved in with me. There are very few arguments I do not wish to have. There are very few arguments I do not wish to have, but there are three or four that I cannot have and be civil at the same time. One of those is about the founding moments of the United States of America. When my roommate suggested that celebrating Independence Day was irrelevant to modern American life, it took all my strength not to go ballistic. I wanted to throw it back in her face and say that her being able to say that without fear of repercussions is reason enough to appreciate our freedom and form of government. I wanted to say some choice words too, but I simply suggested that I didn't want to have the argument and moved on.

We take our freedom and the struggle for our independence for granted now, perhaps because we feel historically removed from the situation. None of us were there for the continental congress when the Declaration of Independence was signed. We are so far removed from these struggles that when a survey was conducted in the 1960s asking people to identify the source of the first line of the Declaration of Independence, most thought it was from the charter for the radical organization Students for a Democratic Society. The line reads: "When, in the course of human events, it becomes necessary for one people to dissolve the political bands which have connected them with another, and to assume among the powers of the earth, the separate and equal station to which the laws of nature and of Nature's God entitle them, a descent respect to the opinions of mankind requires that they should declare the causes which impel them to the separation." Usually, this confusion is used to point to the failures of American e ducation, which it certainly points to. However, the sentiments of revolution so eloquently captured in Thomas Jefferson's words are relevant not only to the American revolution, but to many subsequent ones.

I don't think the USA is the best country in the world, or that we always live up to the ideals that we have as a nation. But I do know that we are always expanding those ideals: voting is no longer restricted to rich white men, and we abolished slavery. And after the civil war which split our nation in two, President Lincoln assured "malice toward none" who had been in the confederacy. We are in struggles to expand equality further in this country. So, today, I will try not to take the freedom I enjoy for granted, and renew my commitment to helping expand the rights of those who live around me.

Naivete

The first time I said "I love you" I was fourteen and I was late in saying it. My love had been saying it creatively for a few months, and I knew I loved her, but I was a little dense and didn't realize that she was saying "I love you." When I did finally realize it, I felt even more loved by her than I had before, mostly because of her enduring patience.

My fourteen-year-old self had no idea how my life would turn out, and assumed that we would last for ever. Death cannot stop true love. I was naive then, but I am disillusioned now. Honestly, I'm not sure which is better.

On new family

I went to Grand Cayman last week for my brother's wedding. His wife's family is great, and to be honest, in many ways I get along better with her than with him. It was wonderful to get a week of shorts weather in January, and to see some family that I hadn't seen in ages. I also got to meet my two youngest cousins. I am starting to get over my nervousness around babies - I much prefer people who can talk.

I had the awkwardness of coming out to my uncle before signing the ketuba as my sister-in-law's witness.

July 12

Ten years ago, I was happy. I was just another happy camper (literally) at OSRUI having a good time in Chalutzim and putting finishing touches on Yom Horim. I spent menuchah and a little time after lights out writing letters to my girlfriend. I guess it's funny that I don't particularly remember July, 12, 2000 as I had no reason to when it happened. Why should a random Wednesday at camp stick out particularly more than any other day, especially when I didn't know that I would want to remember that day.

In fact, the only thing I know to have happened on that day happened 500 miles away from Oconomowoc. And I didn't know until three days later.

Today, on the other hand, I'm a wreck.

Nomenclature dilemma

I was going to refer to H as LBG on my blog. LBG, standing for little blonde girl, a term by which she self identifies, would read too much like LBJ, not particularly one of her favorite former presidents. So, I'm trying to think of other options, because initials are silly.

In any event, I met her parents and her sister this weekend, which went rather better than when she met my parents. I think my brother would like her though, not that my parents don't, but they have a funny way of showing it. Not that I really care what my brother thinks.

Also, I confirmed I lost something of importance from my love today. I lost it a while ago but was living under the delusion that I would find it somewhere in my mess. I can no longer live under that illusion. I realize that stuff is stuff, and that memories are more important than stuff, but that doesn't mean I wouldn't like to hold on to what little stuff I have from her.

Exciting Day

I woke up at 2:15PM - perhaps that's why I'm having so much trouble going to sleep. The last 24 hours have been quite exciting as well. About midnight Friday into Saturday, I had a seizure. It was the first seizure I had had in over 5 years. I was in bed next to the woman I'm in love with, who I'm not dating, and she dragged me to the hospital, understandably.

I got discharged from the hospital at around 6 in the morning. We went back to her place, which is closer to the ER and finally went to sleep. After waking up in the afternoon, I decided to back out on a commitment I had made for dinnertime because I felt so awful and so drugged from everything they gave me at the ER.

However, H had another idea, which was to go to the Taste of Chicago, where Band from TV was playing. Band from TV includes Hugh Laurie and Jesse Spencer, and H and I had a ball. In return, after the Taste closed for the night I dragged her to one of my favorite spots in Chicago. From the Quincy loop stop, there is an amazing view of the Sears Tower [sic], and tonight was the perfect sort of clear to show her.

Parents and trees

Being at my parent's house is weird and horrible. I get frustrated with the way my parents treat me, which is some mixture of a free-thinking adult and a three-year-old. I got so frustrated tonight that I yelled at them. However, I can't really say I regret doing it. I hope that doesn't make me a horrible person.

This past fall, my parents had to take out two trees from our back yard. One was over 75 feet tall. It was a beautiful two-trunk cottonwood, which had served as plentiful shade (and also first base in our childhood whiffle ball games). The other was a modest white pine. The yard looks completely different (and also largely empty) despite the two remaining trees. It's weird to adjust to, but the weirdest thing is that in order to take the cottonwood out, a crane had to be brought into our neighbors' yard. So they have a different tree in their front yard now, making their house not look at all like the memories I have of it. There is no more tulip poplar there, now there is a small maple.

Amazing Experience

Sometimes, when you need to do amazing things you get to. Sometimes, when you need to do amazing things you get to, even if you haven't planned on it and even if the person who suggests doing them doesn't know you need to do amazing things. Yesterday, I went to the drum circle event at Rockefeller Chapel as a part of UofC's C.R.A.S.H week. It was certainly a fun experience. Since the drum circle happened right before the weekly carillon concert, we were able to carry our drums up the 271 stairs to the top balcony of the chapel (and also to the carillon room - I got to play notes on the carillon). Having the extraordinary experience of the view from the top of Rockefeller was definitely worth the climb (and the descent). Also, it was an experience I definitely needed to have yesterday, at least in retrospect.

New Year, New Attitude?

Shanah tovah!

This year will be a very different one for me. I am living on my own (well, with a roommate), but not at home or in a school dorm. I am looking to start a career. I am looking to be more myself.

I pray that I may have the confidence to be myself, to like myself, and to become a me that I like.