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Thursday, January 5, 2017

Balancing Survival and Serenity in Trying Political Times - How Are YOU Doing it?

What is the balance between awareness and resistance, which seem necessary for survival, and peace of mind, also necessary for survival? Any ideas? I'm open to comments!

In A.A. we often talk about accepting that you are powerless (over alcohol, over other people's actions, over the future), doing the footwork, and not projecting about future outcomes. So, do what you need to do next to achieve a goal, but don't worry about whether that goal will be achieved. 

Just as I have always had to be vigilant about my sobriety, however, I feel that I need to be vigilant about tyranny, like a President who believes he can violate the Constitution to suit his own financial gain and a Congress that appears to support that behavior, and political maneuvering to strip vulnerable Americans of basic protections, like freedom of speech, the right to dissent, and access to affordable healthcare.

Sobriety happens one day at a time. You cannot be sober on Saturday night if it's only Thursday morning; you can only be sober on Thursday morning. But you can plan to be somewhere Saturday night that doesn't put you at risk of drinking, and you can coordinate with someone who will respect your sobriety on Thursday morning to be there with you on Saturday night. Do the footwork with the intention of staying sober on Saturday night, but not project about how Saturday night will turn out.

That approach I understand, and after all these years it's like second nature. I don't drink, I don't plan to drink, but I do that one day of sobriety at a time.

All of the steps, principles, and suggestions of A.A. should be transferable to any life problem, concern, event, relationship, job, and usually they work for me no matter what the situation. My dissertation? Write it a day at a time, have a deadline for finishing a draft, don't think ahead to that deadline, just decide what you need to get done today to move in the direction of the goal.  When my Dad was on Hospice? Monitor the situation one day at a time, do or say whatever you need to today in order to be at peace with him and within yourself , and to make sure that he is getting good care, so that when the day comes you have minimal regrets. But know you cannot predict that day or really know what it will be like until it arrives. 

I'm not perfect at it, and some days it is harder than others, but most days I can "work my program" so that I am accepting life on life's terms, taking whatever actions I need to, and feeling generally calm and able to enjoy life.

So, then, I should be able to apply these principals to the transition from my favorite President of all time to someone who I believe is a liar, a con artist, and a threat to democracy and the civil rights of most Americans.  But so far, I haven't been able to do that. Every day, there is something more outrageous than the last, more appointees who would shred consumer protections and corporate regulations; blatant indicators that Presidential favors are for sale on an unprecedented level; attempts to undermine the Office of Congressional Ethics; proposed legislation to cut security for US embassies after years of being obsessed with Benghazi, when security had been underfunded by Congress but the outcomes were blamed on the State Department; reviving archaic rules from the 1800s that allow Congress to devalue Federal workers and agencies on a whim; or the Senate beginning the process to repeal the Affordable Care Act without a plan to replace it.

Every time I choose to pay attention, it takes only minutes for my head to start spinning with anger, apprehension, and anxiety. But when I choose to look away, it is with the knowledge that even more outrageous things ARE happening or COULD BE happening, and I dread being taken unawares. It's sort of like the last few years of my Mom's life, when I would take a break from paying attention to the daily details of her care, only to be called while away on vacation because she had a fall or an ER visit or some other crisis; so I never really stopped worrying about her even if I wasn't actively engaged. It feels like that, only on a much larger and more frightening scale.

So, I don't know how to make the move from this constant state of apprehension and anxiety to the one day at a time approach to surviving this new administration. But I'm working on it.

How are YOU managing it?

Friday, February 26, 2016

When will we realize that ALL Black lives matter?

The #BlackLivesMatter movement is focused on the many "ways in which Black citizens are intentionally left powerless at the hands of the state (" around the U.S.  Most of us who have peripheral relationships to the Black community, or who even just follow this movement in the news and social media, understand the movement as focusing on violence committed against Black Americans by representatives of the state, or the ways in which the state ignores violence against Black Americans and denies justice to the Black community. The faces of the movement, to many of us on the outside of it, are young men like Trayvon Martin, whose murderers are acquitted while their victims are blamed for their own murders, or women like Sandra Bland or Joyce Curnell, who die preventable deaths in police custody.

However, there are so many other ways that we as a nation deprive Black Americans of their "basic human rights and dignity (" that are so much more subtle than outright violence or refusal to take action against the individuals committing that violence. As a social gerontologist, when I think of specific Black lives that matter, but whose human rights and dignity are ignored by our larger culture, I tend to think about the lives of older Black Americans. Older Black Americans, as the result of a lifetime of social inequality, discrimination, and unequal access to appropriate healthcare, face greater risk of diabetes, high blood pressure, heart disease, stroke, and dementia.  And the people that take care of older Black Americans in the community, their families and neighbors who we in gerontology refer to as "informal caregivers", do not have access to the same supports as White informal caregivers. This unequal access can be the result of a history of discrimination which prevents Black caregivers from asking for services, or it can be the result of their not even knowing what services are available because the agencies providing these services do not actively promote their agencies in the Black community.

Now, most agencies feel like they are doing outreach to the Black community because they do outreach in general. What they fail to realize is that people who have endured decades of institutional discrimination is not going to assume they are welcome in your agency. You need to specifically reach into their community, build relationships and trust, and make sure that your services are offered in a way that are compatible with that community's culture. We call this "culturally competent" practice, and it's an important concern whenever someone from the dominant culture is providing services or supports to people from an historically marginalized culture.  And because most of the people working in social service agencies are White, we really have to work at developing cultural competency when we are offering services to people who are not White.  But most of us don't perceive ourselves as needing training in cultural competency, simply because we do not think of ourselves as "racist" (or classist or homophobic, etc.).

It's not that simple.  There are so many ways that we, as Whites, can be blissfully ignorant of how our thoughts and actions effect, and are perceived by, our colleagues or clients who are not White.  That is what growing up in a culture of White privilege does: it blinds you to any experience outside of the White experience.

The reason I am blogging about this today is because I have this brilliant and dedicated colleague (whose name I will not mention here because I don't have her permission), who has been a public health educator for decades, and who has been very successfully providing faith-based public health education and intervention programs to the local Black community for over 20 years. She has won national awards for this work, and has been funded by a variety of local and regional foundations for programs targeting different health conditions in the local Black community.  She is Black, as are the pastors and churches she partners with to deliver her programs. For the past couple of years, I have been fortunate enough to be able to work with her on these programs. I generally stay behind the scenes doing work like writing grants, evaluating outcomes, and writing reports to our funders. She is the founder and face of the program, and the community has known her and trusted her for a long time.

This week, we had a meeting with a potential funder, locally known for it's commitment to the same neighborhoods in which my colleague has been doing her great work, about a new program targeting Black informal caregivers of people with dementia.  My colleague, myself, and another representative from our University attended this meeting. Two of us are White, and my colleague is Black. The representatives from the potential funder were also White.

When we take meetings with outside groups, I defer to my colleague because of her leadership in this initiative and because she has so many more years of experience doing this work. As a junior colleague, I do sometimes have useful information to add to the conversation, but I generally do not interrupt or assume anything; I follow her lead as best as I can. Which gives me the opportunity to observe the dynamics in the room.

Here's what I noticed in this meeting: my colleague, the award-winning public health educator and founder of this program did most of the talking, as was appropriate. The funder's representatives sat across the table from her focusing on their tablets.  They asked questions, but barely looked at her while she spoke. When they asked a question that I had the information to answer, I answered. And they looked up and made eye contact with me for as long as I spoke. Then my Black colleague would start speaking again, and they would look back down at their tablets. Until our other White colleague spoke, at which point they would look up and make eye contact with her until she finished speaking. Then my Black colleague would start talking again, and they would look back down at their tablets. This happened consistently for the full length of the meeting.  Ostensibly, they were using their tablets to take notes about what was being said. But why did they both need to take notes while she spoke, and why did they only need to take notes while she spoke, and not when I or my White colleague spoke?

To be honest, at first I didn't even notice the pattern. At the same time as I was observing their behavior, I was also struggling with my frustration at their general lack of interest in our program and their failure to even read the description we sent them in preparation for the meeting.  Most of the time, I was thinking: How can they not be interested in what she is saying about the program? When I should have been thinking: Why is it that they aren't looking at the one Black person in this room when she speaks about a program that is successful within the Black community? Why does it feel like they give more weight and credence to what I say about this program, than to what the person who created it and makes it successful says about this program?

When I spoke about this dynamic with my colleague this morning, she smiled at me and said: "It happens all the time; we cannot let ourselves be distracted by it." I know she is right that she cannot let herself focus on dynamics like that. She has to keep her eye on the ball - what is important about the work and how we can get it done. But as her ally, I don't think I can just let these things pass. I wish I had done something proactive while we were in that meeting. Like asked them to pay better attention to her, or something. She thinks it was fine to let it go, but I don't feel good about letting that happen. At the very least, I need to bring it to the attention of our other colleague in the meeting, and they to get her to notice dynamics like that in future meetings with other colleagues.

And I want to make you think about it, too. How often do you or other White people in the room pay closer attention to each other than to any Black person in the room? What can you do to change that dynamic the next time you see it?

This experience definitely reminds me that when we think about how much #BlackLivesMatter, we White liberals need to broaden and deepen our understanding of what Black lives matter (all of them) and in what settings (most of them) White privilege is blinding us to those lives and how they matter.

Friday, February 5, 2016

Scanxiety or Opportunity?

I woke up this morning at 4:30am, wide awake, thinking what if instead of choosing to be filled with anxiety about my annual breast MRI, I instead take this opportunity to revisit my mortality and think about the quality of my life in the face of that mortality?  Similar to what you reflexively do when you are first diagnosed with cancer.  Except that now, you are NOT facing a horrifying diagnosis, you are just being forced to think about it a little, until you get the next all-clear.

Onondaga Lake March2012

It's been eight years since my bilateral mastectomy and reconstruction - January 30th 2008, and the completion of chemotherapy - April 30th 2008.  Every year I have a breast MRI, and every year it's a stressful experience.  There's the stress of having to face the possibility of recurrence, which on most normal days you can pretend isn't there. There's the stress of going through the scan, laying face down on that weird foam form, and how painful it can be, the feeling of the contrast as it enters your veins, the way the contrast in your body afterwards reminds you of the way that chemo felt in your body. And for me there's the additional stress of having trouble getting the IV in.  This year, it took 3 needle sticks - one by the tech in the crook of my elbow and the 2 other by the IV specialist in the middle of my forearm and finally, the one that worked, on the side of my wrist. I've had worse - 2 years ago it took 5 needle sticks; I felt like a pincushion.

The day of the test is always a rough day for me physically, but it's hard to separate that physical stuff from the emotional stuff. So I spend a day or two leading up to the test in a state of anxiety, as well as the week between the test and my follow up with my breast surgeon. Who, most likely, will say "all clear."  Of course, knowing that is the most likely outcome would not be causing me anxiety; instead, that anxiety comes from my fear of the other, less likely announcement. The one that, for whatever reason after all these years, is easier for me to imagine.  The "it's back" announcement.  After all, it's happened before. 

In 2007, what should have been a routine mammogram after 5 years of being free from my first breast cancer turned into a repeat of the diagnostic nightmare from 2002, only this time it was invasive cancer.  So that's always there, the possibility that it could happen again.

I have tried over the years to turn this annual scan into "my annual clean MRI" with mixed success. I think I have less anxiety in the days leading up to the test, but I'm still way more freaked out than I want to be. But this 4:30am wake-up was reality-shifting. What if this IS just an opportunity for me to remember what's really important about my life, what I love about it, what I want to change, what adventures I want to have, how satisfied am I with the work I am doing now, what is the quality of my relationships... lots of things to think about that I CAN do something about, rather than focusing on the one thing I canNOT do anything about. I can't know if cancer is in my body, and I can't predict what my surgeon will see in these MRI images. So how can I find a way to focus on something else?

So here's what I can say about my life. It's a great life.  I'm healthy and active, and have the good fortune of getting older. My wife is absolutely the best partner in the world for me. I'm so grateful that I found her when I did, and that she has been with me through all of the trials we have faced in the last 16 years.  Her family, my in-laws, are totally awesome. Her Dad is the best Dad you could ever hope for, and somehow I get to have his support and help. I am so grateful that I got to know her Mom as long as I did. Her siblings are really loving, caring people and completely hysterical at the same time. As are their spouses. And I love my nephews and niece - just the one - on that side of our family. Love watching them grow up, seeing the kind of young people they are becoming. As much as I love knowing and watching the nieces on my side of the family. My relationship with my youngest sister is supportive and encouraging for both of us. I have a good relationship with my older brother. I have great friends. I choose to focus my energy on the relationships that are positive in my life, which I have not always been able to do. I love my job, and the work I get to do in that job. I love the amount of choice I have in my work, and that I can make a decent living doing it. I enjoy the mutual respect between myself and the senior faculty in the institute. I am fortunate enough to have long-standing relationships with like-minded colleagues around the country, and the chance to travel to conferences multiple times a year where I get to interact with those colleagues.

It's all good. This year, we visited Nova Scotia for the first time. I still want to visit Alaska and New Zealand. And Ireland again, always Ireland again! I still dream about traveling around the country in an RV with my wife - although not in that off-the-grid way that braver women than I are living (you know who you are!).


Whatever may or may not have shown up on this scan, my life is good, and I choose to focus on that. And I will make that choice, as often as I need to, for the next 6 days until I can confirm the results of the scan. 

Thursday, December 10, 2015

Why should we care about sexual minority women with breast cancer?

I have said this in previous blog posts, and it bears repeating: when an entire body of cancer-related literature basically ignores a particular community of women, we all remain ignorant of the experiences of that community, even those of us who are a member of it.
To try to shed some light on the breast cancer experiences of sexual and gender minority women (lesbians, bisexual women, queer women, women who have sex with women, gender queer and trans women - MTF and FTM, intersex people), I am conducting a study of social support and sexual and gender minority (SGM) women with breast cancer.  So far, recruitment has been fairly slow, as this is a difficult population to find. So to directly access a larger number of women and improve response rates, I am using crowd-funding to raise money to recruit potential subjects through the Susan B. Love Foundation's Army of Women.  Please donate for this important study!
Over a series of blog posts, I am sharing detailed sections from my original research proposal, so that you can see what my thinking was in choosing this topic and what I hope to accomplish with the study.  I hope you find my argument compelling enough to make a donation to my Indiegogo campaign and to share the study link with any women you know who might qualify or know someone who qualifies.  
Today's post is about the background of my study - a discussion of the existing literature on breast cancer and non-heterosexual, non-cisgendered women.  I hope you will read it, and post any questions you have in the comments.

Study Background
The invisibility of sexual minority women in breast cancer literature is incongruent with what researchers have identified as differential levels of breast cancer risk among women based on SGM identity, and a greater risk for fatal breast cancers among SGM women. Based on these greater risks, one would expect to find more representations of the breast cancer and survivorship experiences of SGM women.
This invisibility in the breast cancer literature, combined with experiences of heterosexism and homophobia in health care settings, and barriers to health insurance and access, may contribute to under-utilization of breast cancer screenings by lesbian and bisexual women. Increasing the visibility of breast cancer in the lesbian community, and improving understanding of the experiences of SGM women with breast cancer  could improve utilization of breast cancer screenings and reduce heterosexism and homophobia in health care settings.
Previous studies of lesbian and bisexual women cancer survivors indicates the importance of social support in negotiating the cancer experience, as well as the sense of isolation experienced by SGM women, many who do not personally know other SGM women who have had cancer.  Some studies of female SGM cancer survivors indicate that for sexual minority women, sexual identity is not as important to the cancer experience as one might expect, and female SGM cancer survivors may not be experiencing higher levels of anxiety or depression than heterosexual or traditionally-gendered women.
Other research indicates that older women living with female partners are generally more likely to need some assistance with activities of daily living than those living with men . More specific to cancer survivors, female bisexual survivors are more likely to smoke but less likely to report physical inactivity then female heterosexual cancer survivors, and  lesbian and bisexual female cancer survivors report poorer self-rated health than heterosexual female cancer survivors. Other research has identified perceived discrimination and perceived social support as impacting the quality of life of female sexual minority breast cancer survivors . The diversity of findings from the handful of studies of sexual minority women with breast cancer indicates that additional research is needed to understand the stresses experience by this population, and of the supports needed by, and available to, them as they navigate breast cancer treatment and survival.

Tuesday, December 8, 2015

The costs of invisibility for sexual minority women

When an entire body of cancer-related literature basically ignores a particular community of women, we all remain ignorant of the experiences of that community, even those of us who are a member of it.
I am conducting a study of the social support and sexual and gender minority (SGM) women with breast cancer.  So far, recruitment has been fairly slow, as this is a difficult population to find. So to directly access a larger number of women and improve response rates, I am using crowd-funding to raise money to recruit potential subjects through the Susan B. Love Foundation's Army of Women.
Over a series of blog posts, I will be sharing detailed sections from my original research proposal, so that you can see what my thinking was in choosing this topic and what I hope to accomplish with the study.  I hope you find my argument compelling enough to make a donation to my Indiegogo campaign and to share the study link with any women you know who might qualify or know someone who qualifies.
SGM women are essentially invisible in academic and mainstream breast cancer survivor literature and in breast cancer advocacy movements.  Books written to guide breast cancer survivors through treatment or recovery assume that all women with breast cancer are heterosexual and traditionally gendered. Commonly available breast cancer memoirs are also written by heterosexual women. While SGM women may still find useful information in materials written from and for the female heterosexual perspective, the heterosexism in these written accounts of breast cancer and recovery experiences tells SGM woman that their breast cancer experiences are unimportant. The heterosexism in breast cancer and recovery literature also reflects the heterosexism many SGM women encounter, or expect to encounter, in health care settings. An additional result of this invisibility is that care providers lack a real understanding of how their interactions with SGM women and the different influences in the lives of SGM women function as sources of stress or support for SGM women facing breast cancer.
For SGM women, heterosexist assumptions in the breast cancer literature and in health care settings may serve as sources of stress and as barriers to seeking the help and support they need during one of the most difficult times of their life. Because SGM women with breast cancer may not have access to a community of other SGM women with breast cancer for support, breast cancer can be a stressful and isolating experience. Women may hunger for information from other SGM women who have been through the same experience. As one survivor in the Lesbians and Cancer Project (LBCPT) stated:
I don’t have other lesbians who are survivors around, or I don’t know other lesbians who’ve had breast cancer. And so I haven’t really had a chance to explore other issues that could come up (2004, p. 6).

This study asks if sexual orientation and gender identity are related to stresses and support in the lives of SGM women with breast cancer. This is an exploratory study, using personal stories to learn about the experiences faced by SGM women who have breast cancer. Data is collected using an online survey. The specific aims of this study are to: 1) learn about the breast cancer experiences of SGM women; 2) to explore sources of stress encountered by SGM women facing breast cancer; 3) to explore sources of support available to and needed by SGM women facing breast cancer; and 4) to develop written resources for SGM women facing breast cancer.