Research--Honoring Our Struggle

I haven't blogged here in a while--I've been blogging all semester as a part of a class--and my blogging energy was wholly dedicated to that blog. But, as the semester comes to an end (not quite yet--one paper left) I find myself feeling contemplative and a bit sentimental about my life path.

As a researcher, it's really been a long time since I've "rock n rolled". 8 years, to be exact--when I earned my MA. Now that I'm pursuing my Ph.D., I am engaging in research again--and it feels amazing. As someone interested in communication in health contexts, my focus is on how communication shapes and is shaped by the institution of health--and specifically how communicators negotiate the experiences of health and illness together within health institutions. This past semester I've been able to conduct a couple of different studies--one that explores the perceptions physicians and patients have of one another based on their communication in medical encounters and another that explores communication with physicians in chronic illness and how this influences patients' understanding of themselves and their illness. I've also spent this semester laying the ground work for a study that explores the communication of hope in palliative care--between patients, medical providers, and support networks (spouses, parents, children, friends).

This research provides me the opportunity to talk with some of the most amazing people about their experiences--whether it's physicians and nurses working with their patients or  people experiencing what some people would consider to be devastating diagnoses as they manage their chronic and/or terminal illnesses. It's an amazing privilege to be able to learn from extraordinary people who are willing to share their journeys with me so that I might learn a little something about the process and perhaps, in some way, make it better or easier for others through my research.

You know, when I first graduated from college, I worked for an insurance company as a Health Claims Examiner. I worked disability claims, and I spent a lot of time on the phone with people who were disabled from a specific condition or injury. My job was to determine if these individuals were, indeed, still disabled and eligible for their benefits. I always loved talking to them, but I hated that my objective was to determine whether or not I could still pay their benefits. I wanted to hear more about them and less about their condition. I wanted to understand and honor their struggle. I've always been drawn to the beauty of human struggle (see an earlier blog post-- The Importance of Our Struggle)  I can't even begin to express how amazing it feels that my research is giving me the opportunity and the privilege to talk with people struggling with illness and honor them and their stories.

I am starting to see how my research can make a real difference for all of us--patients, loved ones, physicians, nurses...all of us. And I'm excited about it.

An Attitude of Gratitude- A Personal Christmas Reflection

This is kind of a difficult post for me to write, but, it's an important one for me to write, for my own self-reflection. I know a lot of people won't agree with the thoughts I convey here, and, I want to say right up front that I respect that. I truly do--I don't expect everybody to agree with me, nor would I really want them to. I hear a lot of things I don't agree with everyday.  Sometimes these impact my thoughts enough to influence my way of seeing the world--it may or may not result in agreement, but it always results in influence-either strengthening my current position, helping me to see another side to my current position, offering me a more nuanced context in which to position my thoughts, or changing my position altogether.  So, I don't expect everyone to agree with me, but I do hope that those reading this blog have enough respect for me to simply consider the message.  Let it become a part of your thought process--one way or another. However it impacts you, I hope that it at least does that. Has an impact.

Some of you know that I am heavily influenced by the work of anthropologist and medical physician Dr. Paul Farmer. He is the co-founder for Partners in Health, an organization intent on providing quality healthcare across the globe, particularly to places in desperate need of it. Now, I'm not going to blog about Paul Farmer--there have been copious works written about his fascinating work in Haiti with the HIV epidemic, Russian prisons and tuberculosis, his work in developing Partners in Health to help address global health injustices alongside Jim Yong Kim (current President of the World Bank) and Ophelia Dahl. I recommend Mountains Beyond Mountains by Tracy Kidder for a quick overview and, for a more in depth look, try Pathologies of Power by Farmer himself. Much of my academic interest in examining communicative processes in healthcare is inspired by this work and the work of his colleagues. Obviously, I am not a physician. And I am not an anthropologist. But I am a human being, and I align myself proudly with his line of thinking that can be summed up by saying that we are all here to use our talents and gifts and whatever position of power we have to serve one another equally-without judgment.

I spent this holiday season with one primary goal in mind. I wanted my children to learn that gratitude is more than a word, it's a state of mind. I started by trying to have them call to mind the things they were thankful for each night before they went to bed. I moved next to showing the kids movies depicting others in situations in which they were disadvantaged. We had many conversations, we read books. It was all good, but not really enough. But the other day when we were delivering Christmas gifts to members of our community who were going to go without this Christmas, I think I saw some of what we were discussing sink in. We visited a trailer park and met two families that were just really neat people. Happy to see the kids, wishing us Merry Christmas, wanting to chat for a while. We met a family who had just lost their father to a heart attack a couple of days before. We met a couple of young men confined to wheel chairs who were full of joy at seeing the kids with their Santa hats and their gifts. Each and every one of these people gave us a heartfelt "God Bless You".

And I realized that I was missing one of the most basic things in my quest to teach the kids gratitude. I was trying to show them how fortunate they are and that they should be grateful for what we have been blessed with as a family. An important, but incomplete lesson. I forgot that gratitude isn't about comparison. It isn't about being "better" or "worse" off than another person. This experience helped me to see something that cognitively and academically, I whole-heartedly believe and endorse, but as a parent, I had missed. I was reminded that I needed to teach my kids that, no matter your position, no matter where you live or what you have, we  are ALL equally deserving of human dignity, love, hope and respect. And we ALL bear the same responsibility to one another to ensure that all humans have this--we all bear the burden of using our gifts, our talents, our position to protect these things for all our fellow humans. We are not meant to be tools in advancing one another, we are meant to be resources to one another to make the world a better place.

It seems really basic. We are here to make the world better for everyone, not just to further our own position. What we do each day should somehow, someway, make the world a better place. We all have talents, and many of us have the means to develop these talents through school, training, experience, perhaps apprenticeships. These talents have the capacity serve others in a variety of ways. They also have the capacity to serve ourselves. While I recognize that we need to take care of ourselves and our families, my hope is that we can focus more on how we serve others rather than ourselves. Some are physicians, like Dr. Paul Farmer, and they can serve others at one of most basic levels-by taking care of the sick. Others of us are teachers, and can serve those around us by what and how we teach. Some of us have the gift of charisma and can draw others to us--and, if we have spread the right message--one of hope, one of love, one of equal dignity for all humans, we've used our talents in a responsible and admirable way.

I know that a lot of people strongly believe that you work for what you have, and if you don't have much, you didn't work hard enough, or you made the wrong choices, or you somehow deserve what you have and are somehow not deserving of more. I realize that there is a polarizing debate right now about the value of social programs and the many ways in which these programs are being abused by those benefiting from them. And there is some abuse--some very bad abuse--no question. But there are many people benefiting from these programs that are not abusing them. There are many people that are in a position of poverty not because they made bad choices or because they are lazy. They're there because of factors outside of their control. Paul Farmer discusses this quite well when he discusses structural violence (see Pathologies of Power). Social, material,  and historical forces that position some groups of people in ways that keep them from pulling themselves up by their proverbial bootstraps.  Other scholars refer to this as "the matrix of oppression". It's both a global and local problem. And among the biggest, most devastating outcomes of this problem is the fact that whole groups of people are homogenized and viewed as the same. Public debates center on a homogenous view of a population, and they are categorically and unceremoniously written off as undeserving social freeloaders who don't deserve charity. Yes, there are some that take advantage of the system. That's the reality--but it's not the whole reality, and it's a major injustice to hold on to such a simplistic understanding of our fellow human beings. It is my belief that we should make policy decisions that focus on those that need the aid, not on those that take advantage of it.

Dr. Paul Farmer has said that the poor should not be given the medical care that is second rate--they should be given the best medical care we have. It's not their monetary status that makes them deserving of a specific level of healthcare--it's their status as humans. Everyone, no matter their economic status, should be able to expect that the wealth so abundant in this world means they will be able to have basic needs met. The images of starving children on the television followed by the news coverage of a gluttonous national hot dog eating contest or national tomato stomping day (yes, this has happened) should bother EVERY SINGLE ONE OF US. People literally starving--dying of hunger--while others living with so much abundance they can stomp on it in the streets.

And, it's important for us to remember that we are no one's judge and jury. When we give to another, it is not up to us to determine what is a "worthy" use of the gift. That wreaks of self-importance. When we give to another, we give to another. Period. Show those to whom you give the dignity and respect to use the gift however they see fit. Who are we to determine what another does with a gift of charity? Yes, we provided the money. Or the food. Or the Christmas wish. But we didn't really provide it if we are handing it over with instructions and qualifications and expectations as to how it should be used as if we somehow now have some sort of right or claim to this other person's life. 

So, I guess for me, this Christmas season, I was reminded that parenting is a process, and gratitude is much more than my initial conceptualization of it. It is, indeed, a state of mind--but it is much, much more than simply being appreciative of what you have. It is a recognition of a responsibility we ALL share to make sure human dignity is felt and expressed toward every other person on this earth, however our gifts or talents enable us to do that. My quest to teach my children an attitude of gratitude has been quite insightful for me. It has lead me to align my personal practice of gratitude with my academic beliefs about it. As a parent, I truly hope that I am somehow helping my children to first be appreciative of what they have. Second, I hope they are learning to recognize the agency they have in making a difference in this world with their unique talents and gifts. Third, I hope they also recognize the responsibility that they bear in possessing these talents and gifts. And fourth, I hope they are learning the compassion, love, respect and commitment to follow through on using these gifts in service of others. 

A Call to Our Elected Leaders

In the week since the school shooting at Sandy Hook Elementary school, I've had the good fortune of spending lunch up at school with each of the kids. While there have been so many poignant moments for me over the course of this week--wrapping presents picked out especially for each of my children and placing them under the tree, cuddling with each of the kids and talking about whatever is on their minds, tucking them into bed at night, checking on them as they sleep peacefully--perhaps no moment was as poignant for me as spending recess with my daughter's Kindergarten class. Playing with her and her friends, watching each of them, in their own unique ways, treat one another with love and kindness. Accept one another. Laugh and appreciate one another. Full of joy and innocence and happiness.

And I thought, as I stepped back and took in all of the love and joy radiating from each of them, about the horror of that day. I think that moment of reflection will stay with me always as one key part of how I remember those school shootings.

And now I listen to public debates about what should be done, what's to blame, why certain things are more to blame than others, and I shake my head, like I'm sure most of America. This is a predictable direction. At what point do we hold our elected leaders accountable for doing their jobs rather than trying to keep their jobs? Every one of them is horrified and saddened by this tragedy. I get that--no one wants to see this happen again--that's our commonalty. Focus on that and work together--don't get distracted by what proposed solutions will benefit you the most (or hurt you the least). That's not your job. That's not why we elected you. Be strong enough to do what's right instead of what you see as "smart".

We elected you to put our well being ahead of your political self-interest. We want you to spend the term for which you were elected working with other elected leaders to solve the problems that threaten us and our children. It is your job to do so. It is your job to do so at the peril of your political future. It is what we expect, even if we don't articulate it well. It is what our forefathers expected of elected officials. You serve us, and in doing so, you sacrifice what's best for you and the party you represent to come together and make our children safe.  To fix the financial problems facing this country so that people can get jobs that feed and support their families. Yes, we get that you disagree with one another...we, as a  people, also disagree with each other on the best way to do this. But let's not get lost anymore in fighting about how to get there and just simply get there. Don't fight about what path will benefit who the most anymore. Just find the path that takes us to the solution. It's your job. Start doing it.

I get that it's not that simple all the time. It wasn't meant to be simple. You're an elected leader of a country that (for the most part) values diverse voices. Every person counts, and it's your job to ensure that every person's position is accounted for in the decisions you make. Does this mean you need to sacrifice and compromise and upset some people--perhaps some very powerful people? Of course it does. That's why you were elected. Will it mean that you might not get re-elected? Maybe. But that's the kind of self-sacrifice in the service of this country that we need to start making changes.  Politicians need to be willing to sacrifice the next term to take a stand and do what's right so that maybe this country can stop spiraling in a cycle of meaningless talk and move toward meaningful action.

Do what you need to do to keep our children safe. To make this country better.  Stop fighting and start working together. Stop advocating and start dialoguing. Stop blaming and start solving. Stop strategizing your next election and start doing the job you were elected to do.

Assumptions Make an Ass Out of You and Me

Not too long ago I was driving through town. I got a phone call--an urgent situation with one of the kids had come up and I was trying to ensure everything was okay-- when a woman pulled up next to me at a red light. She had a look of pure disgust on her face, and as I tried to process that this look was intended for me, she mouthed "pay attention". Thinking I knew her and that something was wrong, I looked at her questioningly, to which she responded "pay attention and you might not bang up your van".

I was shocked. Those of you that know me know that my van, lovingly referred to as Bessy, has a few battle scars. She's parked on campus every day among students, many with very low regard for other vehicles. Not to mention that my overall ability to back out of tight spots (and maybe not so tight spots) is lower than your average Joe.  I don't often think about it though.

This lady shook her head at me in disgust and continued to drive. Curious about her assumptions about me, I pulled up next to her at the next red light, smiled and rolled my window down. She wouldn't look my way, and ultimately drove off. Apparently, a conversation was too much for her to handle--she'd rather stick with sniper like comments rather than truly get to know the person she's so intent on judging. And, while I know she'll never read this, I guess I feel better offering up a bit more about myself.

Here's a little bit about me: I am a full time wife and mother. A full time instructor at the university. A part time PhD student. A full time daughter, daughter-in-law, sister, sister-in-law, and friend. Those dents in the back of my van don't represent irresponsibility, despite what you are intent on assuming about me. They represent sacrifice. Sacrifice so that my children can attend a Catholic school. Sacrifice so that I could spend many years home with them while they were young and so that I can have flexibility in being with them as much as possible as they grow up. Sacrifice so that I can earn my PhD.

I'm no busier than any other mother raising children today. My busy looks different than theirs because I'm a different person. But, your judgement of me upon seeing the dents in my van and me on the phone completely eliminated the possibility for you that I was a unique individual with circumstances unique to me. Instead of engaging in a discussion with me and learning about who I am, you wrote me off and stayed in your comfortable position, looking down on who you perceived to be the irresponsible woman who wrecks her car and talks on the phone while she drives. And, in my humble opinion, you missed out. Not because I'm so great, but because instead of allowing yourself to be challenged by that which you don't know, you took something unique and falsely categorized it as something you do know.  In short, you missed out on an opportunity to challenge your worldview--to learn.

Now, I get that my impression of you is also a snap judgment. Perhaps you've had a terrible situation with someone that was talking on the phone, maybe even lost a loved one to someone who made a terrible decision to be distracted while driving. And if that's the case, I'm sorry for you. Did you see what I just did there? I imagined you as someone unique. I took some time to challenge my initial categorization of you as a stuck up prissy snot (yes, that's what I was thinking as you drove off) and I imagined you as something more. Something unique. I imagined you as someone. In the face of not knowing you, I decided you were worth knowing anyway, and I imagined that you were more than my initial impression of you. And I didn't let the distance between us get in the way of my ability to see you as unique.

Sure, I'd love to fix every dent in my car. But not for the likes of this lady and her impression of me. Not at the expense of giving up the things I value for my children and for my family. The sacrifices I make everyday to provide my children with the things I value and to pursue the things I see as worth pursuit are my business. Those dents in my van--they're not blemishes on my character. They're battle scars of what I would consider to be a life well lived. What you see as irresponsible, I see as markers of who I am. As my Mom has always said--her gray hair was earned through years of worry for her children and something to be proud of as a parent, not something to be ashamed of and cover up. These dents--these imperfections--are my imperfections. They are my sacrifice--and, I'm proud of what they represent.

Tragedies

Like most of America, I am just sick with grief at the news of today's school shooting. Children-babies-gunned down at school. Teachers, trying to protect them and get them out of harm's way, shot dead. A mother murdered by her son. All I could think about as the reports kept coming in were those children running excitedly into their school and, if the school is anything like the one my children attend, all abuzz with Christmas anticipation. Parents waving lovingly at their children as they drop them off at the one place many of them would even think of leaving their young children unattended,  probably thinking about the busy day ahead and the fun weekend that lay before them.

I cannot even begin to imagine the anguish those parents whose children did not come home tonight are feeling. Grandparents who were excitedly anticipating holiday celebrations with their very young grandchildren. Brothers and sisters who lost siblings today to savagery. Young friendships that were developing and growing, lost to unthinkable violence.

Yes, today I am hugging my children very tightly. And tomorrow, I'll do it again. And I'll pray for those families who will, no doubt, struggle forever with this horrific act of violence and senseless loss of life. And I'll keep praying. And hope that somehow, someway those prayers will make a difference.

I heard something on CNN, and, forgive me for not remembering who said it, but it was a law enforcement officer of some kind who was being interviewed about the growing epidemic of tragedies like this one. He said that everyone will grieve and be horrified by this tragedy. And no one will want to talk about how we can address this, dare I use the word, epidemic in our country out of respect for the victims and their families as they grieve. Then he said, when enough time has passed and we have decided to talk about it, no one will care. And I got mad. I was furious at his comments. Through my tears and my sobs and my pain at watching these events unfold on the news, I was cursing him (loudly). Until I realized, he was right--not that we stop caring--that's not true. But we do stop prioritizing the things that need to happen to enact changes that will make a difference. And don't ask me what those are right now--because I don't know. I honestly am too emotionally spent to think about it right now. I just want to hug my kids. But, his words resonated with me--and they're not lost on me. We do come together in times of tragedy, and, when the grieving period is over, as a nation, we drift apart again, sadly, often using the issue that brought us together to further drive a wedge between us and inhibit deep-seated, meaningful change.

This man is right. We do need to follow through. It's not enough to be outraged. It's never enough to be outraged. We need to come together in times like this and stay together-- at least long enough to make a difference. To take action. We've shown we can cry together. It's a starting place. I just hope it doesn't end there too.

Because I'll tell you what, it's pretty troubling to hear five year old children talk on national news about being glad they lived through the day. It's amazingly difficult to hear parents talk about how they were hoping and praying that their babies were among the survivors. THE SURVIVORS. It won't be long and we'll start hearing reports about the perpetrator. And, like so many other situations, we'll vilify him as an evil person--allowing us to dismiss the systemic issues that lead to these problems. Was this man evil--I don't know. I know what he did was evil. But, the man? I don't know. I don't think we'll ever know. The world isn't often that black and white. What I do know is that the problems in our country that are leading to these kinds of tragedies are not going to go away without collective action. They aren't simply going to stop. We need to stand together through tragedies, and rather than politicizing the issues associated with them, we need to work together through them and beyond. This much, I know. But tonight, I don't know much else. I just know I love my kids, and I'm so thankful they are safely sleeping in their beds.

2009 Kid Interviews- Tyler Age 4

Interview Your Kid:Tyler age 4 Tuesday March 3rd This interview was conducted by Kathy. 1. What is something mom always says to you? "I love you" 2. What makes mom happy? "kisses" 3. What makes mom sad? "fighting" 4. When does your mom laugh? "When we do something silly" 5. What was your mom like as a child? "a kid" 6. How old is your mom? "4?5?11? I don't know. I'll never know. Mom, give me a clue" 7. How tall is your mom? "This tall (hand stretched high over head)" 8. What is her favorite thing to do? "make tents" 9. What does your mom do when you're not around? "come with you" 10. If your mom becomes famous, what will it be for? "I don't know. Mom, give me a clue, Fantasia" 11. What is your mom really good at? "Sitting clock part in the Batman Video Game" 12. What is your mom not very good at? "Fighting Bane and Mr. Freeze" 13. What does your mom do for her job? "Work" 14. What is your mom's favorite food? "broccoli" 15. What makes you proud of your mom? "I don't know. When she says yes to let me play the Batman Video Game"" 16. If your mom were a cartoon character, who would she be? "In disguise" 17. What do you and your mom do together? "Play" 18. How are you and your mom the same? "When we're grown ups" 19. How are you and your mom different? "When you were a kid" 20. How do you know your mom loves you? "Gives us hugs and says I love you and gives us kisses" 21. What does your mom like most about your dad? "I don't know. That's tough. Give me a clue." 22. Where is your mom's favorite place to go? "Hy-Vee. Or the Circus""

2009 Kid Interviews- Julia Age 6

Interview Your Kid:Julia Age 6 Tuesday March 3rd This interview was conducted by Kathy. 1. What is something mom always says to you? "I love you" 2. What makes mom happy? "When I listen to her" 3. What makes mom sad? "When I don't listen to her" 4. When does your mom laugh? "When I say something funny" 5. What was your mom like as a child? "human" 6. How old is your mom? "33?" 7. How tall is your mom? "I don't know that" 8. What is her favorite thing to do? "play with us" 9. What does your mom do when you're not around? "she plays with my brother and sister" 10. If your mom becomes famous, what will it be for? "It will be...I don't know" 11. What is your mom really good at? "She's really good at baking with me" 12. What is your mom not very good at? "She's good at everything. Um She's not that good at, well, sometimes she doesn't remember things." 13. What does your mom do for her job? "Teaches on campus" 14. What is your mom's favorite food? "steak" 15. What makes you proud of your mom? "Everything" 16. If your mom were a cartoon character, who would she be? "Minnie Mouse! What a minute, actually, Ariel of course!" 17. What do you and your mom do together? "We make stuff in my Easy Bake Oven" 18. How are you and your mom the same? "We both have comfy socks" 19. How are you and your mom different? "Because she doesn't curl her hair as often as I do" 20. How do you know your mom loves you? "Cause she always says that." 21. What does your mom like most about your dad? "Everything." 22. Where is your mom's favorite place to go? "Everywhere"