20 November 2013
Transgender Day of Remembrance
Even though today has been horrible in terms of my current situtation, I wanted to take the time to remember those who have died because they are Transgender.
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.
18 November 2013
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.
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.
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.
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