I'm sick of correcting people about Mr. Boy dying. Oh, so he died of cancer? Well, no, but cancer killed him. He died of AIDS. The kind of cancer he had is rarely fatal for those with "normal" immune systems, but the 2-year survival rate for HIV+ folks who get it (because of HIV) is 50%. But we still don't like to say people died of AIDS. A long illness, or the secondary cause of death does better, because then we can live in the illusion that AIDS isn't scary anymore. We can live in the illusion that health care is good enough that as long as HIV+ people have access to it they will be healthy for an indefinite period, and it won't be AIDS that they die of, but something else, and we can protect ourselves from infection. And we can live in the illusion that there's no longer a stigma about being HIV+.
Maybe it's that I've had a positive partner, or more than "my fair share" of people in my social circle who are positive, that makes me so sensitive to this. In the US, 1.1 million people are HIV+. There are more than 315 million people in the US. 1.1 million people represents about one third of one percent of the population. About 20% of my social circle is positive, and this was also true before I knew Mr. Boy. In 2010, more than 15,000 Americans died of AIDS. In 2013, three people in my social circle (including Mr. Boy) died of AIDS.
But the stigma of AIDS is still prevalent in our society. When I was read as a gay man walking down the street with Mr. Boy, the assumptions of AIDS on people's faces was easily readable. And in news stories, the assumptions between the lines make me crazy. There was recently an article in the New York Times shaming gay men for not taking Truvada as a preventative measure. And the small piece about Walter Reed blood samples getting mixed up and what Walter Reed is doing to try to find a positive patient is full of stigma. In the article, the person is assumed to be infecting others through unprotected sex or sharing needles, because the author assumed the risk of having someone who has HIV and does not know it must be elucidated for the reader. The biggest segment of new infections of the disease is actually the monogamous partners of males who are not monogamous, contracted through heterosexual sex. Maybe the author knows more about the patient details than I do, but if so, the details should be put to help finding the patient, not toward creating a scare of one HIV+ person who does not know she is. The CDC estimates almost 1 in 6 positive folks don't know.they are positive, totalling to almost two hundred thousand people. If that's your story, make it your story, but otherwise, make the story about the inability of military hospitals and their private contractors to maintain accurate patient data.
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
16 January 2014
22 December 2013
How the URJ Biennial exacerbated my pet peeves with the Reform Movement
I did not attend the URJ Biennial in San Diego. My parents did, and I watched videos, though not live broadcasts, as I was busy during the days it occurred. I was impressed with several of the pieces that are now available on the URJ's YouTube channel including R' Rick Jacobs' keynote, the women clergy (many of whom I learned from at camp and in NFTY) talking about how important NFTY was to their own experience, and R' David Ellenson's d'var torah and blessing of R' Aaron Panken. I enjoyed learning about the work of the Ruderman Foundation, and fun facts about the progressive nature of the Women of Reform Judaism. Neshama Carlebach explained how she was made to feel at home in the Reform Movement and is now choosing it for herself. The cast of musicians was tremendous. I experienced both naches and horror as current NFTYites cheered (naches because it's NFTY and horror because the cheer has changed in minor ways in the ten and a half years since I was a NFTYite). I felt proud of the Movement in which I was raised.
Watching the videos from the Biennial also made me aware of the ideological distance between myself and the Reform Movement, even as there are more and more Reform Jews whose personal observance is traditionally radical rather than rebellious. I felt alienated from the spectacle of pride in a Movement in various ways.
Ideologically, the movement is democratic and capitalist. The Reform Movement is the movement most focused on inclusion of interfaith families, most talkative on issues of social justice, and claims it is the queer-friendliest (although it does not use that term). These attributes were trotted out over and over to justify the Reform Movement's market share in America, propped up with unsurprising data from the Pew Research study on American Jewry. As a socialist raised in the context of multiculturalism who has had the privilege of being a part of genuinely pluralistic Jewish spaces as well as post-denominational Jewish spaces, the competitive nature and liberal democratic values espoused to back it up were a turn-off. I'm not interested in beating other groups of Jews (or anyone). And, as my high school English teacher would say, show, don't tell me, that I should want to be a part of your organization.
Watching the videos from the Biennial also made me aware of the ideological distance between myself and the Reform Movement, even as there are more and more Reform Jews whose personal observance is traditionally radical rather than rebellious. I felt alienated from the spectacle of pride in a Movement in various ways.
Ideologically, the movement is democratic and capitalist. The Reform Movement is the movement most focused on inclusion of interfaith families, most talkative on issues of social justice, and claims it is the queer-friendliest (although it does not use that term). These attributes were trotted out over and over to justify the Reform Movement's market share in America, propped up with unsurprising data from the Pew Research study on American Jewry. As a socialist raised in the context of multiculturalism who has had the privilege of being a part of genuinely pluralistic Jewish spaces as well as post-denominational Jewish spaces, the competitive nature and liberal democratic values espoused to back it up were a turn-off. I'm not interested in beating other groups of Jews (or anyone). And, as my high school English teacher would say, show, don't tell me, that I should want to be a part of your organization.
The Reform Movement has what Rick Jacobs described as respectful differences with Israeli Prime Minister Benyamin Netanyahu. Support for Israel as a political entity as the democratic and Jewish state was talked of the entire time, ignoring the socialist history of political Zionism, and almost entirely ignoring the injustice of occupation in favor of struggles within "Israeli" society for women's equality and religious (read Jewish religious) freedom (on which R' Rick Jacobs said the Movement and Bibi have respectful differences). Furthermore, both Bibi and Vice President Joe Biden talked about the importance of keeping Iran from getting nuclear weapons. Cue Tom Lehrer's "Who's Next?". My thoughts on Israel, and on the relationship between Israel and American Jewry are quite complex. Suffice it to say for this that I think the focus of American Jewish engagement with Israel should not be parroting support for injustice by buying into excuses. The Reform Movement has a vested interest in Israeli politics, having programs and institutions there, and not having its rabbis recognized by the theocratic machine. Therefore it should be outspoken on every issue that it cares about relating to Israel, and it should not describe any differences regarding subjugation of human beings as "respectful". It should not stand by when Israel blames the failure of the Peace Process entirely on Palestinians. As a well-organized body of progressive American Jews, the URJ should exercise its critical perspective on the ways in which Israel does not live up to Reform Jewish values, just as the Religious Action Center does the US government.
Lastly for the major issues, the Campaign for Youth Engagement grates my nerves. Don't get me wrong; I support the involvement of young Jews in Jewish life. I benefited tremendously from URJ camping (9 summers at OSRUI and one at Kutz), and my involvement in NFTY led me to feel like a part of the Jewish community rather than a token or an outsider. The messaging of the Campaign for Youth Engagement is patronizing at best and selfish at worst. Selfishly, it reads: the reason we should engage youth is that we need somebody to take over for us in 25 years. The patronizing read is the message: youth are the future of our movement. As a teenager, being called "the future" was one of the worst things you could say to me. What I learned from being engaged as a kid and as a teen was that I did not have to wait to express my Judaism. I was a Jew then, and I could live Jewishly. My thoughts, insights, learning, and actions as a Jew mattered, even my first summer at camp when I was nine. As I grew up in the realm of informal Refom Jewish education, I found support for my deepening religious observance in the youth movement and in the professionals who served it. I found a camp counselor who was extremely traditionally observant. I found the first person I called my rabbi (who is not ordained as such) in my teacher and mentor Danny Maseng, who implanted within me not only a love for Jewish music but the seeds of the spirituality I am currently building for myself. I found the first rabbi I would call my rabbi in NFTY in the form of R' Arnold Jacob Wolf, z"l, who knew how to criticize my point of view and point me in the right direction while taking my angry rebellious teenage self absolutely seriously.
A URJ cynic would look at my life and say I am not a success story of Reform Jewish youth engagement. My primary Jewish involvement is not through a Reform congregation, but rather an independent Jewish community called Mishkan run by Rabbi Lizzi Heydemann (ordained at the Ziegler School at American Jewish University, which is affiliated with the Conservative movement) who was also taught by Rabbi Wolf. Since June, for the first time in my life, I do not belong to a URJ congregation. (Two of the congregations I'm looking at joining happen to be URJ congregations, and one is more traditionally observant than most URJ congregations.) I married a non-Jew, who, if he survived, would have made the most fabulous rebbetzin [sic]. I am looking toward becoming a rabbi and HUC-JIR is not even on the list of schools I'm considering. After my first year as a camp counselor, I did not stay involved with OSRUI. I am far to the left of the Reform Movement politically. While I consider social justice to be of paramount concern for any Jew, my personal Jewish focus has turned more and more to tikkun middot (which I first learned about at sija in the Bayit at camp). My theological views include a God that still actively performs miracles. I can read resurrection of the dead and praying for the coming of the Messiah in metaphorical ways, although I generally prefer to talk of geulah rather than goel whenever possible. I don't pray for a return of the beit hamikdash, but I do mourn its loss. I believe that we do not have to discard halaja to come up with ethical Judaism. My political Zionism and my religious Zionism are separate. I don't feel there are any areas of Judaism that are not deserving of questioning. I feel that there need to be ritual boundaries between what Jews are able to do and what non-Jews are able to do. This perspective is particularly informed by my growing up with one Jewish and one non-Jewish parent and that non-Jewish parent later converting. I don't believe that saying we are welcoming makes us so. And I believe that talking about gender equality as women being equal to men enforces a binary that we should not be enforcing. So, I'm in no way, the married-to-someone-I-met-in-Tzofim-become-Rosh-Eidah-go-to-HUC-JIR-or-law-school-or-med-school-join-a-Reform-Temple-20s-and-30s-group-future-URJ-board-member success story that the Campaign for Youth Engagement means to create.
However, without Reform Jewish informal education, I would have maxed out the Jewish knowledge of my congregation at an early age. Without Danny's presence, Judaism would seem entirely intellectual to me. Without Rabbi Wolf, Judaism would have become a boring set of rules that I didn't even follow. I would not have developed a daily prayer practice and a reverence for Shabbat. My parents would not attend synagogue on a weekly basis, and my dad has told me it was my passion for Judaism developed at camp that brought him into the Jewish community as a Jew and not just as related to us. My partner would not have been enthralled by the rhythms and ethos of Jewish life. We would not have lived in the rhythm of the Jewish week. And the thought of becoming a rabbi most certainly would not have occurred to me if I had not decided it was the best way to keep coming back to camp every summer for the rest of my life at age nine. My Judaism might look like my brother's. My brother had sporadic engagement with Judaism as a youth including a trip to Israel for the Eisendrath International Exchange, had a minor in Jewish studies at San Francisco State mostly because of the rampant anti-Semitism on that campus, and now his Jewish observance is mostly driven by his devout Catholic wife saying "don't you guys do this" and "shouldn't we...". Judaism for him is at worst something he's stuck with and at best a peripheral connection to the rest of his family. But then again, he and his wife belong to a Reform synagogue. There's another possibility for what my Judaism might look like. I might have gone what R' Benay Lappe calls "Option 2" and thrown out the baby with the bathwater, becoming an atheist who was raised as a Jew or identifying as "spiritual, but not religious". I might have considered myself too good, too evolved, and too enlightened to practice ancient tribal customs. My only engagement with Judaism might be seder at my parents' house. Surely, if somebody had dismissed a teenage me as merely "the future" of Judaism instead of recognized me as a part of its present, I would have been dismissive in return. Instead, camp and NFTY created places where I could be taken seriously where I was, where I developed the passion which led Judaism to be a central aspect of my life, and where my critiques of current Jewish practice started. I don't need to feel a part of the Reform Movement, but I do need to feel a part of the Jewish people. And I didn't feel an emphasis on that from the Biennial.
Lastly for the major issues, the Campaign for Youth Engagement grates my nerves. Don't get me wrong; I support the involvement of young Jews in Jewish life. I benefited tremendously from URJ camping (9 summers at OSRUI and one at Kutz), and my involvement in NFTY led me to feel like a part of the Jewish community rather than a token or an outsider. The messaging of the Campaign for Youth Engagement is patronizing at best and selfish at worst. Selfishly, it reads: the reason we should engage youth is that we need somebody to take over for us in 25 years. The patronizing read is the message: youth are the future of our movement. As a teenager, being called "the future" was one of the worst things you could say to me. What I learned from being engaged as a kid and as a teen was that I did not have to wait to express my Judaism. I was a Jew then, and I could live Jewishly. My thoughts, insights, learning, and actions as a Jew mattered, even my first summer at camp when I was nine. As I grew up in the realm of informal Refom Jewish education, I found support for my deepening religious observance in the youth movement and in the professionals who served it. I found a camp counselor who was extremely traditionally observant. I found the first person I called my rabbi (who is not ordained as such) in my teacher and mentor Danny Maseng, who implanted within me not only a love for Jewish music but the seeds of the spirituality I am currently building for myself. I found the first rabbi I would call my rabbi in NFTY in the form of R' Arnold Jacob Wolf, z"l, who knew how to criticize my point of view and point me in the right direction while taking my angry rebellious teenage self absolutely seriously.
A URJ cynic would look at my life and say I am not a success story of Reform Jewish youth engagement. My primary Jewish involvement is not through a Reform congregation, but rather an independent Jewish community called Mishkan run by Rabbi Lizzi Heydemann (ordained at the Ziegler School at American Jewish University, which is affiliated with the Conservative movement) who was also taught by Rabbi Wolf. Since June, for the first time in my life, I do not belong to a URJ congregation. (Two of the congregations I'm looking at joining happen to be URJ congregations, and one is more traditionally observant than most URJ congregations.) I married a non-Jew, who, if he survived, would have made the most fabulous rebbetzin [sic]. I am looking toward becoming a rabbi and HUC-JIR is not even on the list of schools I'm considering. After my first year as a camp counselor, I did not stay involved with OSRUI. I am far to the left of the Reform Movement politically. While I consider social justice to be of paramount concern for any Jew, my personal Jewish focus has turned more and more to tikkun middot (which I first learned about at sija in the Bayit at camp). My theological views include a God that still actively performs miracles. I can read resurrection of the dead and praying for the coming of the Messiah in metaphorical ways, although I generally prefer to talk of geulah rather than goel whenever possible. I don't pray for a return of the beit hamikdash, but I do mourn its loss. I believe that we do not have to discard halaja to come up with ethical Judaism. My political Zionism and my religious Zionism are separate. I don't feel there are any areas of Judaism that are not deserving of questioning. I feel that there need to be ritual boundaries between what Jews are able to do and what non-Jews are able to do. This perspective is particularly informed by my growing up with one Jewish and one non-Jewish parent and that non-Jewish parent later converting. I don't believe that saying we are welcoming makes us so. And I believe that talking about gender equality as women being equal to men enforces a binary that we should not be enforcing. So, I'm in no way, the married-to-someone-I-met-in-Tzofim-become-Rosh-Eidah-go-to-HUC-JIR-or-law-school-or-med-school-join-a-Reform-Temple-20s-and-30s-group-future-URJ-board-member success story that the Campaign for Youth Engagement means to create.
However, without Reform Jewish informal education, I would have maxed out the Jewish knowledge of my congregation at an early age. Without Danny's presence, Judaism would seem entirely intellectual to me. Without Rabbi Wolf, Judaism would have become a boring set of rules that I didn't even follow. I would not have developed a daily prayer practice and a reverence for Shabbat. My parents would not attend synagogue on a weekly basis, and my dad has told me it was my passion for Judaism developed at camp that brought him into the Jewish community as a Jew and not just as related to us. My partner would not have been enthralled by the rhythms and ethos of Jewish life. We would not have lived in the rhythm of the Jewish week. And the thought of becoming a rabbi most certainly would not have occurred to me if I had not decided it was the best way to keep coming back to camp every summer for the rest of my life at age nine. My Judaism might look like my brother's. My brother had sporadic engagement with Judaism as a youth including a trip to Israel for the Eisendrath International Exchange, had a minor in Jewish studies at San Francisco State mostly because of the rampant anti-Semitism on that campus, and now his Jewish observance is mostly driven by his devout Catholic wife saying "don't you guys do this" and "shouldn't we...". Judaism for him is at worst something he's stuck with and at best a peripheral connection to the rest of his family. But then again, he and his wife belong to a Reform synagogue. There's another possibility for what my Judaism might look like. I might have gone what R' Benay Lappe calls "Option 2" and thrown out the baby with the bathwater, becoming an atheist who was raised as a Jew or identifying as "spiritual, but not religious". I might have considered myself too good, too evolved, and too enlightened to practice ancient tribal customs. My only engagement with Judaism might be seder at my parents' house. Surely, if somebody had dismissed a teenage me as merely "the future" of Judaism instead of recognized me as a part of its present, I would have been dismissive in return. Instead, camp and NFTY created places where I could be taken seriously where I was, where I developed the passion which led Judaism to be a central aspect of my life, and where my critiques of current Jewish practice started. I don't need to feel a part of the Reform Movement, but I do need to feel a part of the Jewish people. And I didn't feel an emphasis on that from the Biennial.
15 December 2013
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.
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.
20 November 2013
Words of Wisdom from the Man I Married
Mr. Boy, dying, has made a number of recommendations to me for life after him.
1. Don't shave with a straight razor. You might be tempted, dandy as you are, but you're too clumsy.
2. You're a MacNeil now. That means your motto is "To Conquer or To Die." Conquering is always preferable, and is no longer meant only in a sense of conquering land or people. Spiritual conquering is the ultimate expression, these days.
3. Don't hang out with people who aren't stubborn; you have no capacity to interact with them well. Stick with Jews and the Irish.
4. Laugh often.
5. You're better at being a good boy than a bad one; it's one of your best qualities.
6. Take time to mourn. Then move on.
7. Read the psalms.
8. No emotion exists that has not been properly captured by the Bard.
9. Being part of an Irish family means you can't ever get rid of them. Don't try.
10. Add Irish to the list of languages you should learn.
11. Don't spend all your time remembering me, and when you do remember me, remember happy times and Hershey's kisses, not hospitals and vomiting.
12. There is an Indigo Girls song perfect for every occassion.
13. If people ask if you're Scottish, you say "Scots-Irish, by marriage." Then they won't ask you any questions about your clan heritage. But learn everything you can anyway. Theoretically, you could owe fielty to Chief Rory.
14. Love. Every person, every moment, every thing.
15. Don't try two days at a time. That's a recipe for disaster.
16. I will always love you. I don't know what happens after death (I'd like to think nothing), but if something does - I will still love you.
17. It will still be hard to be sexy while thinking of a red-nosed reindeer. Take comfort in the fact that some things will never change.
18. So I borrowed this one from my priest, but: Most of the time, what you think is a dementor is just a boggart. And if it's really a dementor, eat chocolate.
19. Dream big; live bigger. Life is always more amazing than your wildest dreams.
20. Though know'st 'tis common; all that lives must die,
Passing through nature to eternity.
1. Don't shave with a straight razor. You might be tempted, dandy as you are, but you're too clumsy.
2. You're a MacNeil now. That means your motto is "To Conquer or To Die." Conquering is always preferable, and is no longer meant only in a sense of conquering land or people. Spiritual conquering is the ultimate expression, these days.
3. Don't hang out with people who aren't stubborn; you have no capacity to interact with them well. Stick with Jews and the Irish.
4. Laugh often.
5. You're better at being a good boy than a bad one; it's one of your best qualities.
6. Take time to mourn. Then move on.
7. Read the psalms.
8. No emotion exists that has not been properly captured by the Bard.
9. Being part of an Irish family means you can't ever get rid of them. Don't try.
10. Add Irish to the list of languages you should learn.
11. Don't spend all your time remembering me, and when you do remember me, remember happy times and Hershey's kisses, not hospitals and vomiting.
12. There is an Indigo Girls song perfect for every occassion.
13. If people ask if you're Scottish, you say "Scots-Irish, by marriage." Then they won't ask you any questions about your clan heritage. But learn everything you can anyway. Theoretically, you could owe fielty to Chief Rory.
14. Love. Every person, every moment, every thing.
15. Don't try two days at a time. That's a recipe for disaster.
16. I will always love you. I don't know what happens after death (I'd like to think nothing), but if something does - I will still love you.
17. It will still be hard to be sexy while thinking of a red-nosed reindeer. Take comfort in the fact that some things will never change.
18. So I borrowed this one from my priest, but: Most of the time, what you think is a dementor is just a boggart. And if it's really a dementor, eat chocolate.
19. Dream big; live bigger. Life is always more amazing than your wildest dreams.
20. Though know'st 'tis common; all that lives must die,
Passing through nature to eternity.
15 November 2013
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.
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.
07 November 2013
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.
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.
01 November 2013
One Jew's Praise of Halloween Customs
in memory of Bob and with all the love in the world for Bud and both of their families
I've seen many treatments recently of whether Jews should celebrate Halloween. On a simple halakhic level, the practice of participating in rituals for another religion is forbidden. Halakhah was not a big concern to me growing up, and still isn't. The following is not an argument for why Jews should participate in American Halloween customs, but rather an outline of the benefits and Jewish values I received in my own life through having a rich experience of Halloween as a child.
My partner lives in Boystown, and gay men take Halloween quite seriously. But the parades and costumes and frivolity of Halloween in the gayborhood doesn't compare to Halloween the way I remember it. The Halloween I remember had no religious overtones, even in South Bend, where most folks are Catholic. It wasn't until I studied French culture that I learned Halloween started as a religious holiday.
I lived in a neighborhood in South Bend that was the envy of other neighborhoods when it came to Halloween. Kids would come to my neighborhood for the king size candy bars those in the mansions would hand out, and, of course, there was the haunted house my "behind" neighbors put together. The best friends, Bob and Bud, who lived next door to each other, used their front yards as a spooky playground, and, I found out when I was older, their homes for the adult party.
As a small child, there was nothing so exciting as the fear that grips you when a hand grabs you in a candy bowl with false bottom. Usually, my parents let my brother and I go trick-or-treating in a modest fashion. The highlight was always the haunted house, whether the candy haul was great or sub-standard.
The haunted house brought the community together, and remains one of my best experiences of maintaining a yearly ritual that has the right intention and right actions - the haunted house captured both keva and kavanah of Halloween. As I became an older child and knew that the hand in the cauldron was attached to a person, and even when I knew who it was under the table, it was still a frightful experience. As I entered my years of being too cool to go trick-or-treating, as a neighborhood kid, I was put to work under that table with my hand in the candy cauldron or spraying silly string at kids from inside a coffin. Becoming the man behind the curtain didn't take away the mystery or specialness of the haunted house experience; it added to it. I was able to pass on the Halloween experience to those younger than me, and be responsible for helping my community. And helping make Halloween happen helped me stay engaged with the tradition when otherwise it would have been uncool to participate.
When I was in high school, tragedy struck, and Bob was killed in a workplace shooting. Bud, a fire chief, was one of the first responders at the scene. After Bob died, Bud didn't feel much like throwing a haunted house and party without his best friends. Bud put up a plaque explaining the absence of the community event. The first year without the haunted house seemed empty. The next year, the neighborhood community organization organized a day-time Halloween gathering in the park in the North Shore Triangle. Halloween, after all, was a time that our neighborhood coalesced around, and we mourned Bob's absence but came together as a community to have Halloween without Bob, but for Bob and Bud. Bud couldn't bear to celebrate by himself, and he didn't have to.
In college, my dorm organized a haunted house and brought people in to trick-or-treat, and as I became involved in the queer scene, many people my age do the costume thing and have celebrations, but there's not a proper ruach Halloween outside of my neighborhood in South Bend.
For me, Halloween is not about who has the cleverest, coolest, or sexiest costume. It is not about how drunk one gets or who has the best drag act. It is not about how much candy you collect or how scary you are or how scared you get. It's not about the decorations or even about great death and ghost puns. Halloween is about community, it's about support, it's about building things together. It's about letting other people enjoy themselves and doing the work to make it happen. It's about hospitality - having way more Halloween candy ready than necessary because you never know who will come to your door. It's about remembering the amazing antics from last year or five years ago, and telling and retelling those stories. And most of all, it's about the power of emanating kindness from the fast friendship of two men.
From Halloween, I learned values of tradition, kindness, what it means to be a part of a community, how to be there for those grieving, how to pass on my love for something to the next generation. And I learned it better and clearer from a haunted house than from my synagogue.
I've seen many treatments recently of whether Jews should celebrate Halloween. On a simple halakhic level, the practice of participating in rituals for another religion is forbidden. Halakhah was not a big concern to me growing up, and still isn't. The following is not an argument for why Jews should participate in American Halloween customs, but rather an outline of the benefits and Jewish values I received in my own life through having a rich experience of Halloween as a child.
My partner lives in Boystown, and gay men take Halloween quite seriously. But the parades and costumes and frivolity of Halloween in the gayborhood doesn't compare to Halloween the way I remember it. The Halloween I remember had no religious overtones, even in South Bend, where most folks are Catholic. It wasn't until I studied French culture that I learned Halloween started as a religious holiday.
I lived in a neighborhood in South Bend that was the envy of other neighborhoods when it came to Halloween. Kids would come to my neighborhood for the king size candy bars those in the mansions would hand out, and, of course, there was the haunted house my "behind" neighbors put together. The best friends, Bob and Bud, who lived next door to each other, used their front yards as a spooky playground, and, I found out when I was older, their homes for the adult party.
As a small child, there was nothing so exciting as the fear that grips you when a hand grabs you in a candy bowl with false bottom. Usually, my parents let my brother and I go trick-or-treating in a modest fashion. The highlight was always the haunted house, whether the candy haul was great or sub-standard.
The haunted house brought the community together, and remains one of my best experiences of maintaining a yearly ritual that has the right intention and right actions - the haunted house captured both keva and kavanah of Halloween. As I became an older child and knew that the hand in the cauldron was attached to a person, and even when I knew who it was under the table, it was still a frightful experience. As I entered my years of being too cool to go trick-or-treating, as a neighborhood kid, I was put to work under that table with my hand in the candy cauldron or spraying silly string at kids from inside a coffin. Becoming the man behind the curtain didn't take away the mystery or specialness of the haunted house experience; it added to it. I was able to pass on the Halloween experience to those younger than me, and be responsible for helping my community. And helping make Halloween happen helped me stay engaged with the tradition when otherwise it would have been uncool to participate.
When I was in high school, tragedy struck, and Bob was killed in a workplace shooting. Bud, a fire chief, was one of the first responders at the scene. After Bob died, Bud didn't feel much like throwing a haunted house and party without his best friends. Bud put up a plaque explaining the absence of the community event. The first year without the haunted house seemed empty. The next year, the neighborhood community organization organized a day-time Halloween gathering in the park in the North Shore Triangle. Halloween, after all, was a time that our neighborhood coalesced around, and we mourned Bob's absence but came together as a community to have Halloween without Bob, but for Bob and Bud. Bud couldn't bear to celebrate by himself, and he didn't have to.
In college, my dorm organized a haunted house and brought people in to trick-or-treat, and as I became involved in the queer scene, many people my age do the costume thing and have celebrations, but there's not a proper ruach Halloween outside of my neighborhood in South Bend.
For me, Halloween is not about who has the cleverest, coolest, or sexiest costume. It is not about how drunk one gets or who has the best drag act. It is not about how much candy you collect or how scary you are or how scared you get. It's not about the decorations or even about great death and ghost puns. Halloween is about community, it's about support, it's about building things together. It's about letting other people enjoy themselves and doing the work to make it happen. It's about hospitality - having way more Halloween candy ready than necessary because you never know who will come to your door. It's about remembering the amazing antics from last year or five years ago, and telling and retelling those stories. And most of all, it's about the power of emanating kindness from the fast friendship of two men.
From Halloween, I learned values of tradition, kindness, what it means to be a part of a community, how to be there for those grieving, how to pass on my love for something to the next generation. And I learned it better and clearer from a haunted house than from my synagogue.
12 September 2013
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.
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.
07 July 2013
Showing My Parents the Gayborhood
So my parents were in town last weekend to see some museum exhibits. While visiting Chicago, they came with me to Mishkan, which for Pride Shabbat was at Anshe Emet, on the north end of Boystown. My parents have been to Chicago more times than I can easily count, but they had never been to Boystown. So, after Kabbalat Shabbat, an awesome Ma'ariv, and a wonderful dinner with rainbow-sprinkled challah which reminded my mother of the challah made by Fantasia Bakery in San Francisco when she was growing up, I took my parents for a stroll down Halsted from Broadway to Belmont.
My parents grew up in the San Francisco Bay Area and are fairly liberal and accepting, if not up on current terminology. However, Pride parades, or parades of any sort, are not their style, so I didn't invite them to go to Sunday's festivities. As we walked, I shared a little about the history of Boystown, and pointed out the "famous" places, as well as my favorite places. Upon seeing a drag queen outside of Roscoe's, my father remarked, "OK, now we're here." My mom was a little shocked that "they still have bathhouses."
My parents grew up in the San Francisco Bay Area and are fairly liberal and accepting, if not up on current terminology. However, Pride parades, or parades of any sort, are not their style, so I didn't invite them to go to Sunday's festivities. As we walked, I shared a little about the history of Boystown, and pointed out the "famous" places, as well as my favorite places. Upon seeing a drag queen outside of Roscoe's, my father remarked, "OK, now we're here." My mom was a little shocked that "they still have bathhouses."
01 October 2011
Home for the Holidays
I'm living in Chicago which is a short train ride away from where my parents live. It's too close to try to stay in my adopted home for the holidays when my parents extend an invitation to their home. While my broader synagogue family in South Bend is warm and loving and it's good to see people, going home, especially for a major holiday has its disadvantages. It's not an appropriate time to come out to people, in large part, though a member of the synagogue once came out publicly on Yom Kippur afternoon. I have an established rule that if I don't ask people to change which name or pronouns they use for me, then I don't take offense if they use the "wrong" ones. Of course, it's still stressful and somewhat foreign by now to spend a lot of time being addressed by a name I haven't used in years over and over.
04 August 2011
Grandpa
My grandfather was one of the best human beings I've known. He was kind and generous and never insulted anyone. I think some of my more masculine behaviors were learned from him, which may be why I come of as old-fashioned sometimes. And I wish I could raise a gin and tonic to him tonight and talk to him about girls (women - he would correct me), because he always had the best stories, if not the best advice.
22 January 2011
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.
12 July 2010
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.
Today, on the other hand, I'm a wreck.
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.
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