The experience of endometriosis

How to explain the experience of endometriosis?  It is not a "bad period" or "monthly pain."  It is an all-consuming, life-altering pain that has real impacts on quality of life. It is not simple fatigue, but rather, all-out exhaustion that prevents you from functioning.  It is not simply irregular bleeding, but instead bleeding on more days of the month than not.

Endometriosis intensifies with age. This has certainly been true for me.  Twenty years ago I used to be able to manage my pain with a normal dose of ibuprofen. When that no longer worked, birth control pills worked for a time. When those stopped worked, depo provera was tried. That never worked. In recent years, I have tried Toradol, a prescription NSAID, which also did not work, as well as narcotic pain relievers.  I am very cautious about my use of these because I know that if misused, they can have disastrous consequences.  Also, I find them to cause intense constipation which only exacerbates the pain of endometriosis.

After my laporoscopic surgery last year, my doctor put me onto Lupron.  I suffered through six months of this drug, a nasty injection that causes immediate chemical menopause. In my case, it also caused suicidal ideation, mood disturbances, and nearly continuous hot flashes. You are limited to six months of Lupron every few years because it depletes calcium stores and decreases bone density. It is a nasty, nasty, drug.

I have been taking continuous birth control pills since last April.  These have exacerbated my hot flashes and mood swings.  They also cause a more or less continuous menstrual period.  I pass large pieces of uterine tissue and blood clots.

I have passed out from pain. I have thrown up from pain.  I regularly experience fevers during ovulation and menstruation.  I alternate shaking with chills and sweating uncontrollably. The only thing that can somewhat soothe my pain is sleeping in a dark, quiet room with a heating pad. This is not all that compatible with being a functioning human being.

On Saturday I was woken up out of a sound sleep with a stabbing pain in my abdomen that continued for hours. It was accompanied by a fever. The pain decreased when my period started for the third time in two weeks.

When I am in pain, I can easily sleep 14-16 hours a day.  This impacts my ability to work and be social.

I know that endometriosis is a progressive disease without a cure. I know that more surgery is likely ahead of me.  I know that even when excised, endometriosis lesions can recur. But I also know that I am putting a lot of hope on my surgery next week.  I will undergo another laporoscopic abdominal surgery where my surgeon will attempt to excise the endometriosis lesions that I have.  I will also undergo a uterine ablation, where the lining of my uterus will be cauterized. Finally, I will have a Mirena IUD placed.  The IUD delivers progesterone locally, which will hopefully decrease the side effects I experience from taking hormones systemically.

Endometriosis and Kidney Disease

I've been tired this year.  I have emotionally been through a lot, so I attributed my unrelenting fatigue to a year that included a lot of stressors. Back at the beginning of August I went to my physician for a check up.  I was expecting them to tell me that I was likely just worn out and needed to rest.  I wasn't sure how this would work, since I was already sleeping about 14 hours a day, but I figured it was probably nothing.  Instead it turned out to be something. 

My labs were off, indicating that my kidneys weren't doing their job. My labs have been mildly abnormal for about a year, so my doctor sent me off to a nephrologist, a kidney specialist.  I was diagnosed with Chronic Kidney Disease, stage 3, based on my labwork.  The other interesting finding is that my body had extremely low stores of iron and downtrending hemoglobin.  This anemia was the cause of my extreme fatigue.  The kidneys produce a hormone, erythopoeitin, which stimulates red blood cell production, which carry oxygen. My kidneys weren't telling my body to produce enough red blood cells. I was prescribed oral iron supplements.  After about six weeks of oral intake of iron, I still wasn't feeling better, so I began a series of iron infusions. Finally I am feeling better. The picture you see with this post is one of my infusions of iron.

The biggest question is, how did I end up with kidney disease? 

Well, based on my medical history, the nephrologist had an answer for that too.

Endometriosis.  My constant companion of chronic pain.

I have had endometriosis (a disorder of the reproductive system where painful lesions of endometrial tissue grow outside the uterus and adhere to other organs, tissues, and vital structures) likely since I was 13. This disorder is characterized by excruciating pain, and a whole host of other unpleasant symptoms.  This disease is only diagnosed by surgery, which I had in September of 2016.  To combat the pain, I took exorbitant amounts of ibuprofen.  Sometimes up to 24 pills a day, that is 4800 mg, or about 1200 mg more per day than the recommended Rx dose.  The kidneys filter drugs from the blood, and my kidneys have taken over twenty years of abuse from ibuprofen. 

I have been very quiet about my endometriosis because there is such a stigma involved with menstruation and the female reproductive system.  But I am tired of being quiet about it.  Endometriosis has had very significant consequences in my life.  I have extensive scarring.  I am having a second surgery on October 3.  Endometriosis is one of the most common contributors to infertility, and I have been diagnosed with this also. Endometriosis causes intense pain, which I average feeling about 2-3 weeks per month. Endometriosis has irreversibly damaged my kidneys.  Kidney Disease has a very slow progression, and because I have eliminated all NSAIDS from my life, my trigger for kidney damage, my disease will likely stay exactly where it is and I will not ever need dialysis or transplant. Since I do not have diabetes or high blood pressure, my kidneys are not under stress  any longer. 

This post, my coming out about endometriosis and its consequences in my life, is my attempt to destigmatize and demystify the disease.  Watch for more posts to come.

Breaking Point

I work in a field where I am reminded every day that someone out there has it worse than I do. But today feels like an insurmountable day. It feels like there are mountains to climb and I just can't do it. I am doing my best to survive my divorce, but it is really, really hard. I am hoping that writing about it will help today.

My ex (she who shall not be named) and I began to have issues last summer, nearly one year ago. I am not going to tell her actions to the internet because I am attempting to keep in check my desire to slander her. She wronged me greatly, and I will leave it there.

We tried many months of therapy. We tried a couple months of separation while she was in Washington, DC. Nothing worked. On Valentine's Day, she told me that she had fallen out of love with me. She began to mention divorce.

We agreed to a trial separation for the spring.  It was to be twelve weeks. I located an apartment for us, I would take the first six weeks, she the second. I packed up belongings to take to the apartment. I wasn't happy with this solution, but I was attempting to make it work.  I got really sick just before I was to move. She had to move all my belongings out of our shared house and into the apartment while I slept for days on end. 

After I emerged from the fog of sickness, she told me to drive to my new apartment. She said this wasn't permanent, it was just a trial. Until she told me differently two days later.

On April 3, she said she wanted a divorce. This is the day that everything changed. I shifted in my mind from being married to being divorced. Up until that point, she was the one who wanted divorce. From this moment,  I wanted the divorce. I wanted to be free from nearly a year of unrelenting pain and walking on eggshells and weekends where she would kick me out of our house and make me stay in a hotel because she didn't want to see me.

What do you do on the day when your whole life falls apart?  I went to work, because I didn't know what else to do. And I have been forging forward and attempting to put the pieces back together ever since. 

The actual process of divorcing has been a nightmare. We attempted a collaborative divorce process. This was an attempt to save money and expedite the process. But she has dragged her feet and stuck her head in the sand all along. She has gone many weeks without communicating with me or our financial planner (who is doing the division of assets) and our attorneys. She has blocked my calls and text messages. She refuses to turn in documents that are requested by the financial planner. This has now dragged on for four months.

I am at my breaking point today. I am at a loss of what to do. I am again mired in the concrete of her passive aggressive refusal to move forward. She has yet again refused to turn in required documents. Our financial planner is going on vacation for a week. So I am staring down another week with no progress. No potential of filing the divorce decree this week. Another week of unknowing and still being entangled with someone with whom I want no further contact.

I am no longer hurt, I am enraged. I am enraged that I have become the driver of this divorce. I am enraged that she refuses to extend even a shred of common courtesy to me or to the professionals attempting to facilitate our divorce.

I am heartbroken at the hatred I feel for someone that I used to love. I am heartbroken at the coldness and calculation with which she has approached this divorce. 

Today is a breaking point for me. I am just not sure yet what has broken.

Helping a friend through divorce

I wish that I was not joining the ranks of the divorced. This is not what I wanted for myself, my life, or my marriage.  It was not initiated by me, although I am now pushing forward to complete the process.

I wish more than anything that this was not my life path. But it is. And I have learned a few things along the way, that might be helpful for those who are helping a friend through divorce. 

The helpful things:

1. You can attempt to recognize the extent of the impact of the divorce
A divorce is said to be like a death with no body. This is true. The ugly withered fingers of divorce work their work into just about every area of your life.  For me, I lost my home, my pets, and started over with $0 in my bank account. Everything changes in an instant. Your friend will feel like the bottom dropped out from under them.

2. You can offer your friend grace when they are too tired, sad, or otherwise having difficulties coping
Divorce takes a tremendous amount of energy.  Just existing takes energy. Your friend likely won't be as productive as they once were. They might be too exhausted to keep up with social obligations. They probably won't remember dates, times, or other things.  Extend them grace. My employer has been tremendously gracious to me throughout this season of my life, and I cannot express my gratitude enough.

3.Make sure your friend is eating healthy food
One of my colleagues gave me gift cards to the cafeteria to make sure that I was eating real food. Other friends brought me coffee, invited me out for breakfast, or otherwise made sure that I was actually consuming food and not subsisting on cereal and bananas.

4. The little things matter more than you will ever know
The little things that so many of my friends did for me will not be forgotten. Allowing me to do laundry in their homes so that I didn't have to pay for the Laundromat. Picking me up from the airport so I didn't have to take an Uber. Asking me how I was doing and listening to the answer. Making me laugh with funny instagram pictures and cat videos and pictures of their children.

5. Make sure your friend has a place to go with you
Holidays are hard. Weekends are hard. Special days like anniversaries and birthdays are hard. I am thankful for all the people who reached out to me and took me out for coffee and trips to the farmer's market or walks or board game nights so that I didn't have to be alone with my thoughts. I am thankful for my family who flew me home to Montana for Easter.


The not so helpful things
1. Don't draw comparisons
Every divorce is different, just like every marriage is different. Your divorce/your parents divorce/your siblings/friends/neighbor's divorce is going to be different from mine. Just because you have lived through a divorce in some capacity does not automatically make us the same.

2. Don't triangulate/enable triangulation
This is just good advice for life, but also good advice in the aftermath of a divorce.  Don't tell me about what my ex is doing. Don't carry messages to/from my ex. Just don't.

3. Don't give advice/pass judgment
I unfriended and blocked someone really quickly for saying, "every divorce has two people involved in it and two sides to the story" when I reached out for support on a particularly bad day. Also, don't give advice unless specifically asked.

4. Don't slander my ex
Of course this is something that I want to do, and I may even do in therapy and with my close friends. But it is not helpful for you to do it for me.  Please don't.

5. Don't treat me any differently
I have experienced a loss, but I am not lost. My heart was broken, but I am not broken. I am angry, but I am not enraged. Please just be my friend.

These Shoes

These shoes belong to a chaplain. These shoes are "hospital shoes", which is a nice way of saying they barely make it inside the front door of my home. Because I have no desire to bring MRSA, CDiff, VRE or anything else home to my family. 

These shoes are hardworking shoes. They walk endless miles of hallways, at least 5-6 miles a day. 

These shoes are covered in blue surgical booties in bloody traumas or operating rooms at the time of organ donation. 

These shoes stand alongside deathbeds and extubation procedures and trauma bays. 

These shoes are stared at during family consults and death notifications and on silent elevator rides with families who leave their beloveds in a sterile morgue.

These shoes see so much. 

On Black Lives Matter: A letter to other liberal white people

I have struggled with whether or not to write anything about Black Lives Matter, because the last thing the world needs is another white person centering their voice in the movement. I have had a voice for too long, so before I go any further I will lift up the voices of some folks of color whose words have inspired me.

Nekima Levy-Pounds 

Broderick Greer 

Bishop Michael Curry

The Rev Wil Gafney, Ph.D

The Rev Grace Imathiu

This is by no means an exhaustive list and I welcome further suggestions to expand my reading lists. I have also appreciated the writings of James Cone , Ta-Nehisi Coates, and Michelle Alexander. I encourage you to check them out, familiarize yourself with their work and become conversant about Black Lives Matter and the profound racism that continues to plague people of color in America.

As a white person, I have my voice heard almost automatically. My privilege allows others to listen to what I have to say. So I need to proceed carefully with what is mine to say.

Primarily, what is mine to say is to own my white privilege. I was born with advantages because of the color of my skin. I have never been followed in a store for fear of shoplifting. I have never had to fear for my life when being pulled over by police, I just have to fear for a speeding ticket. I don't have to be expected to speak for my entire race or have my experience be generalized as true for all other white people. I benefit from institutionalized racism. I benefit because I have white skin. I might not like to think that I am racist, but I am racist. Because I unknowingly benefit from privilege in an untold number of ways. Because I am ignorant of all of these benefits. 

Next, what is mine to say is that it is not the "job" of people of color to educate us (white people) about racism.  It is OUR job to educate ourselves. Google Black Lives Matter for the basics. Visit NAACP's website. Check out any of the websites of the people linked above. Ask me questions and if I don't know the answer, we can find it out together.

Generalizations such as "We're all the same inside" or "I don't see skin color" etc, are violent. They erase the lived experience of racism and pain and injustice of people of color. These expressions are said with good intentions, but good intentions aren't good enough. Commit to educating yourself and educating your family, friends and neighbors.

Don't assume that your experience is the same as that of others. I have many family members who are law enforcement officers. I work with police, sheriffs, and detectives nearly every day in my work at the hospital.  By and large, my interactions with law enforcement officers have been positive. I respect the work that they do. I have never had a bad interaction, but I don't know the experience of others. Part of my role as an ally to the movement is to honor the stories of others and to believe what they are telling me. It is entirely possible to respect law enforcement officers and want to hold them to a higher standard and because of the many cops that I respect and work alongside, I do want ALL police held to higher standards.

Don't EVER say, "All Lives Matter."  Period. Don't do it. Our racist culture reinforces in thousands of ways that some lives matter more than others. We are lifting up Black Lives Matter because it is time to uncover the racism that has plagued our siblings of color. This is yet another example of invalidating the experience of so many people of color. As white people, we already know that our lives matter. We must keep proclaiming that Black Lives Matter.

The work of chaplaincy and "emotional labor"

A. Kumm-Hanson Minneapolis 2016

I stumbled across something the other day comparing the physical labor to what is called "emotional labor." This idea resonated with me, because of the emotional intensity of chaplaincy. Work of this nature has ramifications for the chaplain's personal life and perhaps an honest appraisal of the toll of emotional labor can contribute to resiliency and health for the chaplain.

Chaplains dwell in the realm of the not-quite-tangible. Our practice involves spiritual and emotional concerns, not physical or social issues to be addressed. Our tools of assessment are not stethoscopes or CT scans, but our ability to listen deeply, our intuition, and our own emotions. In order to assess our patients, we literally use our own souls. We check in with what we are feeling to "take the temperature of the room" (to quote a CPE supervisor). We reflect back the emotions of our patients using mirroring techniques. We do not feel in full the trauma or death or pain of our patients, but we do go into those spaces with them and surround ourselves with that suffering.

Chaplaincy does not involve physical labor like industry, but it involves labor. One of my wise colleagues mentioned that the main difference between a healthcare chaplain and a parish pastor is that while pastors can and do enter into spaces of suffering and dying, they may only do so a few times a year. Chaplains go into the places of deep suffering many times per day. It is emotional labor to center one's self again and set aside whatever might be happening in the next hospital room over or the ER or whatever the chaplain witnessed already that day to be FULLY present with each patient.

It is tremendous emotional labor to be able to walk into a trauma room (I have the privilege of working in a level 1 trauma center) and exude calm. It is human nature to react to extremely stressful situations with "fight or flight" responses. It is a matter of training and experience to be able to observe calmly what is happening, with heightened senses, and be a source of calm and steadiness for others.  Instead of "fight or flight"chaplains "focus and feel." One of my favorite ER nurses said about chaplaincy, "Your physical presence in a trauma room is a rock for the patient, but also for the staff. We know you are going to be calm and we look to you for that strength." It is not physically possible to hold onto all the pain that we take in, but it takes emotional labor to release that pain also. When we come home from that night shift or that day of visiting nursing homes, we often just want to eat and turn our brains off. And in our sleeping or our reading or our netflix binge watching, that pain seeps out slowly like sap from a tree. It hurts a little, but it is necessary to relieve the pressure.

Our conversations with patients are deep. We talk about the sorts of things that many of us would rather ignore. Death and suffering and aging and tough decisions. We are called into ethical dilemmas and to bear witness to patients gasping for air and to offer comfort to family members. We are called to sit with patients so they do not die alone. Sometimes we forget how to have light conversation, because so many conversations in chaplaincy are serious. We might have little tolerance for small talk in our personal lives because we bear witness to the most sacred and painful moments of the human experience. But we want you to know that nothing you might say will scare us, because honestly, we have heard it all before.

We might not want to be social butterflies during our off time or we might want to surround ourselves with a close network of people who "get it." Because it is so hard to explain what we do, why we do it, and how we can possibly continue to do it day in and day out for years. We love our work, but it changes us. We think way more than the average person about the ravages of cancer or the slow death of dementia or the violent randomness of trauma. We are constantly thinking about the lives (and deaths) of our loved ones and we are constantly faced with our own mortality.

We might not always have the emotional energy to be fully present to our own spouses, families and friends at the end of the day. This is the greatest consequence of emotional labor for me. I am an introvert and sometimes I just do not have the emotional reserves to be a wife and family member without time to recharge.

For me, the most important tool in managing the toll of emotional labor is ritual. I symbolically put aside the day by changing out of my work clothes immediately upon returning home. I pray silently in my car that God would hold the concerns of those whom I serve in my work, so that I can let go of them. I visualize all of the trauma and suffering that I hold in my body draining out of me and into the earth. Sometimes I literally lay on the ground and do this. I worship in a faith community that sings its prayers and holds hands together, and I derive strength from the great cloud of witnesses each week. I cry when I need to, because sometimes it is all too much to bear.

Another important part of my resiliency is self-care. I relax HARD on my days off. I sleep a lot. I work out. I eat good food and enjoy good coffee. I try to do creative, generative activities like art and knitting, that allow me to create something tangible. I derive enjoyment from physical activities like yard work and cleaning, because it allows me to use my body instead of my mind. I ask for help when I need it. I love my spouse deeply and enjoy the company of my dogs and their enjoyment of the present moment.

I am not perfect at any of these things, and I still find myself getting worn down at times, but they are disciplines and they get better with time.

Fellow caretakers and chaplains, how do you counteract the toll of emotional labor?

What Not to Say: < awkward silence >

A.Hanson, Boulder, 2010

Today's phrase in the "What Not to Say" series is not saying anything at all.  I think we have all had the experience of not wanting to say the wrong thing.  So perhaps we think that the best thing is not to say anything at all.

One of the most hurtful things that compounds bereavement is when one's friends drop off the face of the earth.  Sometimes we don't want to exacerbate someone's pain unintentionally, by saying something wrong.  Or perhaps we are afraid of unintentionally unleashing a tsunami of grief by asking the wrong question. Or perhaps we just can't deal with other people's tears or pain.

I know from my own personal experience and from the people that I accompany through their own grief, saying nothing at all is painful.  There is a fear that if you should ask about someone's recently deceased loved one, you will cause them increased pain.  The pain exists whether or not you mention their loved one and one of the few things that can be balm to a grieving soul is talking about the person they love and miss and have lost. Telling stories of your wife or father or sister or son is a way of preserving their memory for just a bit. Talking about the loved one that has been lost is a way to make sure that they are not forgotten, which is one of the greatest pains for those who are left behind.

It is not likely that a kind and compassionate conversation will unleash a torrent of grief that cannot be stopped.  People who are in grief are already living in a place that is overwhelming.  Your reaching out might be a life raft.

I have almost nonexistent patience for people who cannot stand to witness others' grief. This is one place where it is really difficult for me to summon compassion.  You do not have to say anything profound, because honestly, there are sometimes just not words.  But showing up and showing that you care goes a long way, so try to get over your discomfort about tears and runny noses and pain, and meet your friend in your humanity. Because one day you are going to need the support of your friends too.

Here are a few things to say instead of saying nothing…

"I just don't know what to say, but I am here for you."
"I cannot imagine what you are feeling, how much pain you are in, but I love you."
"I wish I knew what to say. Would it be helpful if I walked your dog/babysat your kids/brought you dinner?"

What Not to Say: "They are not suffering anymore"

A.Hanson, Boulder, CO. 2009

This is one of the trite platitudes that I have mixed feelings about.  It is not factually incorrect, but it is still not one of the better things that you can say to a grieving family.  When someone dies, after a prolonged illness, it is indeed true, their suffering is over. But the suffering of those they leave behind continues and intensifies.

This saying in particular is well-intentioned and comes from a place of wanting to offer care, but it is still one of those "What not to say" phrases. Saying, "they are not suffering anymore" is an attempt to erase the very real (and raw) pain and suffering that precipitated this death.  Death is hard work.  We all hope for a peaceful death, but in reality, that is only one potential outcome among many possibilities. To say, "they are not suffering anymore" denies the intensity and the rawness of what just occurred.

Death does not occur in a vacuum.  When someone that we love dies, that has ripple effects on everyone around them. A family system is disrupted. A way of life is over. There is suddenly an absence instead of a presence. A whole life of stories and experiences is just gone. And the suffering for those who grieve is just beginning.

So please, don't say, "they are not suffering anymore" when you mean "I cannot imagine how painful these last weeks have been while you watched your loved one slip away."

Say instead….

"I see your pain."
"I am willing to listen."
"Tell me about what hurts."
"Do you want to talk about it?"

What not to say: "You can have other children"

A. Hanson Denver, 2014. Blue Christmas. 

Today's post in the series, What Not to Say is particularly heartbreaking.  I have encountered well-meaning people saying "You can have other children" to those who have recently experienced a miscarriage or to those parents who lost a child or children just before birth, during birth, or in infancy.

It is so heartbreaking because in saying this to grieving parents, you have completely ignored the reality of an already-loved and cherished child who is very real and a part of this world.

One of the most heartbreaking spaces where I find myself as a chaplain is the birthing room with parents whose child died in the womb, during birth, or shortly thereafter.  It is a liminal space in which life and death are so intricately intertwined, that it is impossible to distinguish one from other. The crushing reality of not leaving the hospital with a newborn is suspended for a short time. Parents will hold and kiss and snuggle their baby and say the things they need to say.  As hospital staff, we do our best to create memories with footprints and handprints and locks of hair. This space of honoring all the lost possibilities and potential of this child, THIS child, is so very necessary.

Saying, "You can have other children" ignores the child who has died. But it is also cruel because there is no guarantee that there will be other children.  Conception may have been difficult, there may have been complications that make future pregnancies difficult or impossible, or perhaps the grieving parents just cannot bear the pain of infant loss again.

The most painful thing is to pretend as if the child never existed, that a miscarriage or other infant loss is merely something to get over.  To be so scared and uncomfortable with someone else's pain that we cannot even bear to talk with them.  Please never say, "You can have other children" because those potential future children are not what we are talking about now.  We are talking about the beloved one who has been lost.

Try saying this instead…

I am here for you in whatever way is helpful.
I would like to hear your baby's story, if you want to tell me more, I am willing to listen.
I love you.

Or the ever helpful,
Here is a casserole.  Please bake at 350 degrees for 30 minutes.

What not to say: "This is God's will"

I put a picture of my bobble-head Jesus reading a Greek Bible as the graphic for this post, because today's post in the series "What Not to Say" is just as ridiculous.

"This is God's will" is another attempt at compassion gone horribly wrong.  Along with "God needed another angel", these trite phrases are an attempt to explain the unexplainable, to make sense of something senseless, and to apply reason to something that is completely unreasonable.

Theologically speaking, we cannot, in any way ascertain God's will, whoever or whatever that god might be. People who might self-identify as "Bible believing"Christians will tell you that reading the Bible will help you ascertain God's will, but this is simply not true.  Because the Bible is a composite document, there is not one cohesive picture of God or of God's will.  Furthermore, there is not a way to provide an answer in advance for every single contingency that might arise. The best thing that the Bible has for us to figure out God's will is a very rough algorithm.  We hear over and over again about justice and compassion and care for others as being God's will, so let's go with that.

Which is why this particular platitude is so very asinine. Because telling people that their loved one's suffering or death is "God's will" is just about the opposite of justice and compassion and care for others. Like most of these sayings, this one probably starts from a place of desiring to offer compassion, but the best intentions get lost in creating an image of a God who plucks people out of families and lives at will.

I have witnessed deaths of all sorts, those from traumas and cancer and violence as well as old age, and NO DEATH is God's will.  Death is a biological inevitability, it happens to all of us, and trying to blame a particularly tragic death on God's will just does not make sense.  It is God's will that we would love one another.

So therefore, what to say?  How about…

I love you
I care about you
I am sorry
Can I bring you dinner?
Can I watch your kids for you?
Can I walk your dog for you?

What Not to Say: "God needed another angel/heaven needed them more than we do/God called them home"

A.Hanson, Minnesota, 2014

Today's post in the series of "What Not to Say" looks at the phrase, "God needed another Angel" and many similar phrases including, "heaven needed them more than we do", "God called them home", "Jesus needed them."  This phrase is often used in the moments and days after a death, particularly a death that is unexpected or exceptionally tragic, like the death of a child or of a young adult.

In my work, I have found that parents who grieve the death of a child sometimes express comfort in thinking of their child nestled into the loving arms of a God in heaven. I support them in finding whatever means can bring them comfort in unimaginable moments of pain.

But linking the death of a beloved person to the activity of God by anyone else is problematic.  It places blame on on God for the death, and creates a god who takes people from their loved ones at will.  This particular platitude can absolutely ruin any sort of comfort that someone can find in their belief system in the arduous days, weeks and months to come. It opens a crack of disbelief in an already fragile grasp of meaning-making, and makes room for the intrusive thoughts of, "What is wrong with me that I don't belief God actually needed my child/sister/father?"

Saying, "God needed another angel" denies the very human needs of love, care, nurture, and relationship.  It implies that God's need for something (which to be brutally honest, we can never actually know, although God never NEEDS anything, that is why God is God) is greater than ours and that our needs should always be subservient to those of a temperamental deity off in the sky. This is crap theology.  Every single major world religion has precedent in their holy texts for arguing with their deities and for lamenting pain and suffering.

Finally this platitude ignores the experience of those who do not ascribe to theological systems that have a deity and an understanding of life after death. Or who are atheist or agnostic or have belief systems that are outside a very specific expression of Christianity.

Instead of saying, "Heaven needed them more than we do", say, "I can see how much you love them.  Tell me about your child/partner/parent."  Or share a story of why their life matters to you.

Or bring a damn casserole over and say, "bake at 350 degrees for 30 minutes."  That's infinitely more comforting than claiming God swooped in like some vulture and took someone's beloved.

What not to say: "Everything happens for a reason"

A.Hanson, Denver, 2011

I stumbled across this really excellent article the other day, ""Everything Doesn't Happen For a Reason" by Tim Lawrence. It articulates the philosophy behind my care in chaplaincy.  I spend nearly all of my work hours walking alongside people who are living the very worst days of their lives. There really are not words for these moments, so most of the time I just stand or sit quietly. My ministry is one of presence.

But there are things that well-meaning people say that cause more harm than good.  I should preface that my patients guide their own care.  If someone expresses the belief that their illness or suffering, or that of their loved ones, fits into a plan that is meaningful or provides hope, I would explore that system with them.  I would never dismantle structures of meaning for someone.  This series of posts, "what not to say" is directed towards those who wish to support those who are suffering.

Platitudes like "everything happens for a reason" are misguided attempts at support that are much more like self-soothing on the part of those who seek to assuage their own discomfort.

Placing suffering into some greater plan is an attempt to push back the deep paralyzing fear that a crisis could happen entirely randomly. If we admit that someone experienced an entirely undeserved and random event, the unspoken corollary is, "It could happen to me too."

The task of placing meaning onto a random event, to find some greater purpose in suffering, is ONLY for the person for whom the suffering belongs.

Let me repeat that, ONLY the person who is experiencing the rupture of the fibers of their world can place meaning for good onto their suffering. 

No clergy-person or well-meaning friend or family member can assign a greater purpose to suffering.  Suffering is never part of God's plan.  It is not about drawing someone closer to the divine or reminding them to trust in God or turn their lives over to a higher power.

Meaning can be found on the other side of suffering.  I know many families who have found purpose in advocating for organ donation or financial support for disease research or have indeed found that their experience of suffering encourages them to draw closer to the divine.

But I also know people and their families whose lives have been destroyed. Who never recover.  Who never find meaning in their suffering.

Not everything happens for a reason.  Sometimes shit just happens.   By saying, "Everything happens for a reason" we refuse to see the person who is suffering. We do not see the pain right in front of us, instead, we jump forward to some greater meaning at the expense of the very real person who is living that pain.

Instead of saying, "Everything happens for a reason," say, "I can't imagine what you must be feeling. Can I sit with you?" or "I see you."

Or better yet, don't say anything.  Just be.  That's what I do a lot of the time.

Lamb of God, you take away the sin of the world…have mercy on us.

A.Hanson, Minnesota, 2013

I am finding myself singing the Agnus Dei this morning, "Lamb of God, you take away the sin of the world, have mercy on us…"

This morning at approximately 12:21am Eastern time, the state of Georgia executed Kelly Gissendaner.  

Lord have mercy on us all.

My first experience with hearing about the death penalty in my life was when the state of Montana executed a man in 1995.  I remember being horrified with the sensibilities of a child that someone could be put to death by the government for killing someone else.  It just did not make sense to me then, and it still does not make sense to me.

A friend of mine was murdered in 2007 by a random stranger in a suburb of Minneapolis. I was devastated and outraged.  But I did not want her killer put to death, because that was not going to bring Katherine back and it would not honor her memory. The death penalty has tremendous costs, and they are not just financial.

I think about the people who are charged with carrying out executions. The wardens and guards and nurses and techs. The medical professionals who put an IV into the condemned person's body. Who are using the training that was obtained with the intent of preserving life and using it to end another person's life. I think about the person charged with pressing the button on the other side of a wall that will transmit the lethal drugs into the veins of the one being executed. The executor does not see the executed, because if they saw what they were doing, one would hope that they would not be able to do it. I wonder how those people feel at night when they go home from work and caress their spouse and hold their children. If their hands carry the blood of another. I wonder how this weighs on their hearts.

I wonder how the legal team feels and how the judge feels and how the supreme court felt when they denied Kelly Gissendaner's final emergency appeal. How they must feel when upholding the law of the land which is so senseless and horrifying.

I wonder how the family members of the victims feel as they watch an execution. Do they feel relief?  Or do they feel lingering hurt? Are they happy to put this chapter behind them?

I wonder how the family of the condemned person feels.  Do they feel relief as well? Are they weighed down by shame? Do they bury the memory of their once-loved one?

I would not say that I am "pro-life" because that is so politically charged.  I am PRO-HUMANITY. I am in favor of anything that reminds us of how we are all interconnected. I am in favor of preserving life. This extends to abolishing the death penalty, but also addressing the systemic racism and injustices inherent in our legal and penal systems.

Why do we kill people who kill people to show people that killing people is wrong? 

I also remember when I signed my first petition against the death penalty (an Amnesty International petition) at a church event as a high school senior.  And the many that I have signed since. Some days I feel hopeless.  Today is one of those days.  I am inspired by the ministry of Sister Helen Prejean, a Roman Catholic sister who has dedicated her life's work to speaking out against the death penalty.

I understand anger and the desire for revenge. I understand deep grief and hurt. I understand wanting vengeance for death.  But in the end, if death wins, we all lose. And that is why I am singing the Agnus Dei so fervently this morning.

Lamb of God, you take away the sin of the world…have mercy on us.  Mercy on us.  Mercy on us.

Stories from Chaplaincy: Warm and Dead

Late in the afternoon on a winter day a "trauma code" came overhead and through my pager. This case is the singularly most horrifying case that I experienced during my year of residency.  It still haunts me.

A patient was brought in on a search and rescue stretcher.  The EMS team tracked tons of snow into the trauma room. There was so much snow and ice brought in on this patient that the social worker and myself ran to the blanket warmer, grabbing stacks of blankets to place over the floor to prevent the team from slipping. The doors of the trauma room were closed.  Maintenance was notified to crank up the heat to over 85 degrees.  The team who was performing CPR was sweating profusely. I wrapped warm blankets around tearful firefighters and EMTs who were shivering even in the heat of the ED.

They needed to talk.  The patient was found in the water in the mountains. Clothes were frozen. Shoes were frozen. They didn't know who this person was or where they came from or how long they were in the water.

The Emergency Tech came out of the room in tears.  She couldn't start an IV.  She couldn't draw blood. The patient's veins were ice. She laid her head on the counter. A nurse came out of the room.  He said, "the patient isn't dead until they are warm and dead.  The patient isn't warm yet, so they aren't dead."

Warm and Dead.

And so for the next hour or so, rounds of CPR continued on the patient with ice in their veins. It is heart breaking to watch such fervent life-saving efforts. It is heart breaking to watch people who have dedicated their life's work to saving lives to be trying to save an impossible life.

Once a warmer body temperature was reached, resuscitation stopped.

I still don't know how the patient's family knew to come to our hospital. I know I didn't call them, and that was usually my job. I looked for a wallet, but there was none. I think the state patrol somehow notified them.  And also notified a victim's advocate who came to the ED covered in freshly fallen snow.  Such pure snowflakes amid such unrelenting horror.

From the family we learned that the patient disappeared after a call made several days earlier.

But after that, we don't know. Only that the patient was submerged for a few days and somehow their family ended up weeping into my arms.

When I thought of this patient, I could only think of white skin, the color of ice, frozen solid. And of ice in veins. And I would weep for the senseless and horror and aloneness of this death. And I would pray that this person knew some kind of comfort in their last moments out in the elements. And that when they were declared warm and dead, they might know how many techs and EMS workers and nurses and chaplains wept for them in a fluorescent ED.

Stories from the ICU: Minimally Acceptable Quality of Life

One of the situations where I often found myself called into in the ICU was when families were attempting to make difficult decisions about the future for their loved ones who were under our care. These were nearly always dire decisions. Patients were on life support, which works for awhile, but the longer someone has a ventilator or trach, the greater the likelihood of infection or hospital acquired illnesses. Sepsis was a constant and deadly threat. Nurses would balance the patient's body processes for them, with dialysis and mineral replacement and dietitians would balance artificial nutrition and fluids. Sometimes there is a possibility of recovery, often there is not.

One of the questions that is asked by critical care physicians or palliative care physicians is, "What is your loved one's minimally acceptable quality of life?"

It is not really enough to talk about "being alive."  Because "life" can mean barely hanging onto a grasp of this world. It can mean being in a coma, tethered to a ventilator and catheter and central lines, with machines and nursing staff taking care of your body's every function. This is enough for some families. Just the possibility of knowing that their loved one is still present with them.

But quality of life is different than being alive. We talk about being able to communicate and recognize our loved ones and care for ourselves and engage in meaningful activity. I spend a lot of time thinking about what meaningful quality of life would be for me. I would want to be able to communicate (whether or not that involves speaking or another tool for communication) and recognize my spouse and my family. I would want to be able to engage in the meaningful activities that I enjoy such as reading and writing.

For some people, minimally acceptable quality of life includes such things as maintaining hearing and sight, the ability to walk, and being able to complete all their own activities of daily living. These things are not at the top of my list, because I know people who are able to thrive even with these limitations.

But minimally acceptable quality of life varies for everyone. And it is the role of the chaplain in these conversations to be able to help families name this. We would gather our ICU families into a conference room, with social workers and nursing staff and chaplains and physicians present. The doctors would present the medical situation, and other team members would share insights. The family could ask questions, and then attempt to make the decisions that no one ever hopes to make.

Sometime last year (details deliberately obscured) I found myself in one of these family conferences. The patient had suffered a catastrophic brain injury as a result of an extreme sport. The neurologist was mostly confident that the patient would survive, but with significant impairments that would require ongoing medical support and would never live independently.

The family decided to proceed with transitioning to comfort care. To extubate, and remove all medications and interventions except morphine for pain relief. This decision was not made lightly, because this patient had another family member who had experienced a traumatic brain injury and had made it known that they would not wish to be kept alive in that situation.

This was a point of friction with doctors, who often had to persuade families to transition to comfort care after stopping non-beneficial medical interventions. The family's idea of minimally acceptable quality of life was different than that of the medical team. But in the end, it is the patient's decision (or in the absence of decision-making capabilities, the proxy decision maker). And as the chaplain, I accompanied this family through the worst days of their life, made a little bit easier because the patient had made their wishes known about their minimally acceptable quality of life.

It is my prayer that everyone who reads this post would think through what "life" means to them, and share that with family members and close friends. Don't make your family guess. Give them the gift of sharing your wishes.

Chaplaincy series: when chaplaincy is so heavy...

I have a job that brings me up close and personal with the absolute worst that this world has to offer. I see people on the worst days of their lives.  I am with people in their last moments. I deliver news that no one should ever have to hear. I see horrific injuries. I bear witness to death, usually on a daily basis. I ask grieving family members to donate their loved one's organs and tissues and corneas. I have seen the death of children and of parents and grandparents.

But all of that is distinct from the heaviness of the loss of one of our own.  A hospital staff is a tight-knit family.  A trauma center functions as a well-oiled machine and we all depend upon each other in some macabre symphony to play our part and somehow we end up saving more lives than we lose. On friday, one of our Flight for Life helicopters crashed during takeoff. Two of our flight nurses were critically injured and one of our pilots lost his life. I know all of these people and this hurt will be with our hospital family for a long time.

Sometimes chaplaincy is so heavy. And I can only carry what I see and hear and experience like smooth stones in my hands. Laying down these burdens as I can in safe places.

Please pray for the chaplains that you know and love.  This work is a sacred calling but it can be so very heavy at times.

Created in the image of God

If I am totally honest, part of the reason that I went to seminary was to learn enough about the Bible so that I could feel like I could defend myself, my sexuality, to those people who were telling me that I was an abomination in the eyes of God. I spent most of my life feeling like there was the word of God, which I was told was extremely clear on issues of homosexuality, and then there was me.

I was a Christian, but I just did not feel like I belonged in the body of Christ.  I always felt like the promises of God’s grace and love were for other people.  Those people who were straight. As a teenager, and young adult, I had a ravenous appetite for devouring scripture. I read the Bible with desperation of someone starving for acceptance. When reading the Bible did not yield the answer that I so deeply wanted, that I was loved by God despite my sexuality, I pursued graduate theological studies.

I read every book that I could find that talked about sex and marriage and love in the Bible.  I learned Greek and Hebrew, so that I could read scripture in its original language, hoping against hope that I would find what I was looking for. I engaged professors and fellow students in energetic discussions, arguing with every person throughout my life who told me that I did not belong. I joined progressive Christian communities, and I even preached the radical love and acceptance of God, but I struggled to believe it could be true for me.

Around this same time, I met the love of my life, my partner Katrina. Our love is a glorious thing and it is through this beautiful relationship, that I have come to know God’s love for me as a queer woman. As I wept bitterly that I was graduating with my Master’s of Divinity degree and still did not have definitive proof that I was loved by God, she simply said, “God has created us and our love for one another, and it is good.  Because how can something so beautiful as our love be anything but from God?”

I am created in God’s image, including my orientation towards intimate partnership with another woman, and it is good. I have read the Bible cover to cover multiple times, I know the history of sexuality in the Bible and in the ancient near east and the Greco-Roman world, and yet, I never dared to believe I was loved by God until I dared to be loved by a woman.

I could argue all day about why homosexuality as we know it now, as a consensual, loving relationship between two adults simply did not exist in the past. I could argue that the Bible contradicts itself and that at the center is love and acceptance. But that will never be enough, because “knowledge puffs up, but love builds up.” (1 Corinthians 8:1) It is love that changes everything.

To those of you who are wondering if God loves you because you are gay or trans or genderqueer, the answer is yes!  To those of you who have never heard that you are loved by God’s people and that you belong in the body of Christ, you do! If you will let me, this queer Lutheran pastor will never stop telling you that you are made in God’s image and that you are loved by God and by me and by so many others who follow Jesus. Because how can anything so beautiful as you be anything but from God? 

Chaplaincy series: a new kind of praying

A.Hanson, Boulder, CO 2010

A long time ago, probably when I was a teenager or something. I read a magazine article that stated that it was cruel to say that you were going to pray for someone and then not actually do that. At the time, prayer to me was a very specific practice.  It was undoubtedly shaped by the Bible, and probably a few zealous sunday school teachers, and my own family that insisted that if your eyes were not closed during the prayer said before a meal, it didn't count.  In my mind, prayer was kneeling down, folding your hands, closing your eyes and bowing your head.  You could pray your prayer silently, but it was better if you prayed out loud.  I also had a particularly formative experience regarding prayer at Bible camp.  There as a well-meaning (if probably wrong) pastor who did a sermon illustration.  He held the end of a long rope and the other end was being held by someone on top of a tall rock at the side of the outdoor chapel. He would wave the rope up and down, and the person playing God, on top of the rock, would wave the rope back.  He implied that prayer was a transactional communication process and you had to put something in to get something out.  And that is how most of us think of prayer.  We put in some intercessory effort and God gives us an answer.

I am the witness to thousands of unanswered prayers. Fervent, pained, hoping against hope kind of prayers for something, anything, to be different. Prayer as a transaction just doesn't stand up to the rigor of a trauma center.  I need a different understanding.

About seven or eight years ago, when I was in the midst of one of the myriad faith crises of my twenties, I told a friend that I would "keep her in the forefront of my consciousness."  This was the closest that I could get to saying that I would pray for her. I didn't think that my humble words to some far off deity would change anything, but somehow I instinctively knew that I could hold her and her pain together with something greater than myself. As I got more involved in the church in recent years, this kind of hippy-trippy sort of prayer was shoved to the back burner in favor of liturgical prayers and ancient words that felt more meaningful to me. Many of the prayers that I heard being offered and even spoke myself in church were offered in earnest, but were without any real teeth.  Prayers like "courage", "wisdom", "understanding", and "acceptance."  These sort of blasé prayers happen without really putting God's feet to the fire.  They are general enough that it is possible to interpret any variety of outcomes as God's answering prayer.

The trauma ICU doesn't have time for well-intentioned prayers for understanding. Part of what I adore (and simultaneously abhor) about my work in the ICU is that all extraneous stuff is stripped away. There is literally no time for small talk or euphemism.  Life and death are so real that you can smell them. The prayers that are offered in the ICU are for life in the midst of death, relief in the midst of unimaginable suffering, and merciful and quick deaths.

I can no longer see prayer as a transactional form of communication with God.  Because most of the time, medical conditions in the ICU are more comparable to a runaway train than they are to a polite conversational exchange. Everything chaotic seems to happen at once, and time seems to stop and pile up on itself.  I, along with my patients, need a more comprehensive understanding of prayer.

I will continue to speak the intercessory words, because that alone is an act of pastoral care.  But I will hold them, and you, with a spirit of consciousness, along with the God of the universe. My tears are a prayer. That I carry you home with me and think about you when I am not at the hospital is a prayer.  When I hold your hand, careful not to disrupt your IV, that is a prayer. Prayer doesn't require wearing out the knees of your jeans, but it does require getting your hands dirty.

Chaplaincy series: "Chaplain, do you believe in God?"

We were in the surgical ICU, this patient and I.  He was there for an exacerbation of the lung disease that he didn't know that he had several days before.  I was there because his nurses called me because they did not know what to do to make him feel better. He was weeping.

I introduced myself. He continued to cry.  He didn't meet my eyes. I asked if I could sit down. He motioned to the chair next to the bed.

I sat in silence.

"Chaplain, do you believe in God?"

Nothing like a little chatty small talk to start off a visit.  My vow as a chaplain is to go with you wherever you need to go, so I am in this.

"Yes." (this doesn't feel entirely honest so I continue) "But no."

He responds, "What do you mean?"

"I believe in something way bigger than myself and in the things that I cannot explain.  But I see many things that make me question the existence of any sort of god."

He thinks for a moment. "Like people suffering?"

"Yes, like people suffering. I cannot reconcile what I see sometimes here in the hospital with what I have been taught about God in church, sunday school and the Bible."

"Me neither. What do you think happens after death?"

Without much thought I respond, "I have absolutely no idea."

He says, "That's good, because I think the same thing.  And I guess I don't think much about that either."

"Neither do I. I am more concerned with how we live now and how we care for each other."

He says with feeling, "You are doing a good job here. Most pastors aren't honest."

"About God?"

"About anything. They are so concerned with sounding like they know what they are talking about, that it is pretty much a bunch of shit, everything they say."

I laugh, "You have nailed it.  Thank you for your honesty."

We talk awhile more about his experience with faith and prayer and God.  At the end of the visit, I am moved to tears and I tell him that I have very much enjoyed the visit and that this conversation was a gift to me. He squeezes my hand and waves goodbye.  I continue crying, because of the honesty, the real-ness, and the sweetness of the sacred in that interaction.  My interaction with this particular patient summarized so much of what I have struggled to put into words as a chaplain.

I have wrestled with, fought, cursed, cried, and perseverated about who God might be and what God might be up to in light of all of the suffering and hell I see every single day. Nothing is simple.

I see the very limits of human faith and understanding abut all sorts of moments of uncertainty, both in my life and in others, and I have often felt like Jacob, yelling at the angel of God, "I won't let go until you bless me."(Genesis 32:26).

I have been blessed with uncertainty.  I have been blessed with struggle.  I have been blessed with a vulnerability and a brokenness and a willingness to say, "I have absolutely no idea."

I believe in a God of immanence and transcendence.  I believe that there is no where that God is not.  I do not believe that God causes illness or injury or sends trials to test one's faithfulness. But a God of immanence is everywhere and in all things and there is no where that God is unwilling to go in this world.  I believe in a God of transcendence, that there are things that lie outside the realm of our understanding.  I do not know what this means for the afterlife or heaven or if there is some place paved with streets of God, but I believe in a God of mystery.  I believe in a macro-God that works on a scale that is outside our realm of comprehension.  I don't always see what God could possibly be doing on the day to day level of all the suffering in this world, but I do believe that the arc of the universe bends towards justice and reconciliation and love. I have no proof of the existence or identity of God, just that some force of life and love seems to dwell within me and within others.  I still believe that humanity is basically good, and in our faces, we reflect God to one another.

I have struggled with whether or not I could be a pastor.  I have been accompanied by doubts and questions of faith my entire life. I never settled for easy answers and I never asked easy questions. Sometimes I feel as if I have nothing to offer except my own story of brokenness and questioning and experience of God. I will never be "executive teaching pastor" because I have no illusions that I am some sort of expert.  I may have a graduate theological degree, but that left me with more questions and a deeper sense of the mystery of God than it did with answers. I preach what I know, which is a God of reconciliation and a God of love.  A God who knows what it is to suffer and knows what it is to die, and by going into those places of darkness and death, vanquishes them. There is no place that God is not willing to go or has already been.  And today that is enough.