December 24, 2018
Changing in Front of Others
It has been about 2 months since I did my TED talk. I shared our story in hopes that my experience might help folks who (like me) find themselves struggling to accept a loved one who has just revealed their secret.
A friend asked me if I thought my talk would have been helpful to me when Kat came out. Yes, I do! At that time, I felt confined to a dualistic choice between remaining true to my faith and accepting my daughter for who she was. I knew instinctively that this was a false dichotomy, but all the voices in my life spoke as one with no room for questioning. If I had had just one trustworthy voice in my life providing an alternative choice it would have helped my journey greatly.
My Hope
I want to be the voice now that I needed then. My hope is that people who are struggling to accept their LGBTQ loved one will see my TED talk in private. In private they can hear my story without pressure.
Someone said, “People don’t like to change in front of other people.” It’s true. We don’t like to change clothes in front of other people and we don’t like to change our minds in front of other people. We want be seen as decisive and strong. Changing our minds where others can see is just too vulnerable. It was certainly true for me. Vulnerable is not strong enough of a word for what I felt. I felt like a failure as a father because I couldn’t keep my own child on the “straight and narrow”.
How do you go from hiding in shame to speaking out with confidence? Not in one step I can tell you.
The stance of my community was clear with no room for interpretation on this issue. We believed gay people were choosing to live a sinful lifestyle. If I had been brave enough to openly question my community, I would have been immediately shut down. There was no place for a message of acceptance. But in the beginning, when I needed a safe place to question, my shame kept me hiding in the dark. In essence, if not by design, my feeling of failure kept me in my place, with my mouth shut. (Perhaps this is a good example of living in the closet?)
Secret
My journey of questioning began in secret. As I said in my talk, “I was no longer satisfied to repeat what I had been taught. I needed to know what I believed and why! Kat was my reason.” That journey didn’t happen in front of other people. The hard work of asking questions, studying and ruminating was private… and it took years!
The first time I remember actually speaking up was in a Bible study group. Someone asked the question, “Can a person be gay and saved?”
At this time, I was just beginning to question things myself, but I answered clearly and firmly, “Yes!”
The other person was not expecting that response and asked how I could be so sure.
I said there was no place in scripture that mentioned anything about a person’s sexual orientation as a qualification for salvation. If we were actually using the Bible as our guide then we have no right to add requirements to the list. Even though at that time I was not accepting of LGBTQ people (that feels so weird to say now), I was adamant that we answer such questions with integrity. Either we believed the Bible had answers for that kind of question or we didn’t.
Q&A
At the end of the TEDx Charlotte event, all the speakers gathered on the stage for Q&A. Someone asked me how my experience affected my own spiritual journey. It was a fantastic question (and a tough one to answer). Although I have made a complete 180 degree change on my thoughts regarding the LGBTQ community, I don’t think I was “wrong then” and “right now” spiritually speaking. The things I believe now are very different than they were 20 years ago. Knowledge and experience helps us grow and change if we allow it. Self awareness of our own change adds a healthy dose of humility. I do not have all the answers. Humility has been an unexpectedly wonderful gift.
My hope, my wish, my prayer is that many who are struggling to accept a loved one will hear Kat’s and my story in an unpressured environment and that our story will inspire and influence them while adding a sense of urgency. We do not know how long we have with our loved ones. We simply must find a way to love while we live.
Selfish Wish
One last selfish wish is that I get to hear some of those stories of our story’s influence. The day of the TEDxCharlotte event, at least 15 or 20 people approached me and told me their stories. It would be so encouraging for me to continue to hear how our story actually influenced others and contributed to healing relationships.
In case you haven’t seen it yet…
Until next time…
December 4, 2018
Acceptance Is the First Step to Love
Just a few weeks ago (on October 12, 2018) I did a talk at TEDx Charlotte. Here it is!
Dear Jim,I am writing to you from your future. There are some things I need to give you a heads up about. But first I want to tell you that you are a good dad. . Not because get it right all the time, but because you love your family. There are some heavy things coming your way, and that love will guide you to the very best outcomes.You have a wonderful faith community. But it’s not important that you agree on every little thing. Your community will be stronger with voices like yours pushing the boundaries and speaking up for marginalized people.Speaking of marginalized people, when your youngest daughter is 15, she’s going to come out to you as a lesbian. And it’s going to frighten you. It’s okay to be scared. It’s not okay to be mean. When she tells you, don’t talk, just listen. Listen to her as if she is telling you the most important secret of her life (because she is). When she’s done, tell her how much you love her. Make sure she knows this changes nothing about your relationship. And save your rejection for later… you’re going to find out you don’t need it.You will find the strengths courage to face the fears and beliefs that stand in your way. Don’t take too long. You do not have as much time with her as you think.As you begin to accept her, you are also going feel alone, but you are not alone. You will meet others who are loving and actively supporting their LGBTQ children. Join them. You need them and they need you too.Finally, there’s no easy way to say this, but just as you were there to welcome Kat into this world, you are going to be there with her when she breathes her last breath. It’s not supposed to be like that, and there is nothing I could say that would make losing Kat be okay. But know this, Jim. When she leaves this life, your daughter will feel loved and completely accepted by everyone who mattered to her, and you are one of those people. That is worth everything!Love, Jim
From the TEDx Charlotte site:
How we relate to people we don’t understand is more important than we know! Life is too short and the stakes are too high to reject our loved ones. We must find a way to acceptance and love while we live.
What do you want people to learn from your talk? Accepting and loving our LGBTQ family and friends for who they are is not only possible but is a foundation for the best life possible! It’s hard emotional work, and our LGBTQ loved ones are worth the effort.
What action items do you want people to take away from your talk?
1) To understand that they are not alone. It is hard for many of us to accept our LGBTQ loved ones.
2) Understand that their loving acceptance is more vitally important than they know.
3) Feel the urgency to accept… time is short.
4) Just decide to accept this person they do not understand.
5) Seek out support through organizations like PFLAG to help them love well.Jim is the father of four daughters and 7 grandchildren. He and his wife have been together for over 40 years. Originally from Charleston, SC, he moved to Charlotte with his family in 1999 to join First Union National Bank as a programmer. He is now an Application Systems Engineer with Wells Fargo working with Document Management COE.
Jim loves backpacking, gardening, bird watching, and photography, but most of all, he loves sharing these with his fantastic grandchildren. He has been active in the Charlotte PFLAG organization for 4 years where he is now a member of the Faith Action Committee.
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx
March 20, 2018
Why Is Jim an Ally?
I was asked recently why I’m an LGBTQ ally. Here’s what I said…
I LOVE MY DAUGHTER more than I loved my dogma
I am an ally because I love my daughter more than I loved my dogma.
The youngest of our four daughters, Kat, came out to my wife and me around 2001 when she was 15 years old. At the time, we were very committed, conservative Christians, and to say this was uncomfortable would be a huge understatement. We were devastated!
Our first thought was that we needed to correct this problem. I got lots of literature from a group that was committed to fighting the “gay agenda” and we sent her to counselors who we hoped could “fix” her. I am not proud of that first response, but it was motivated by love and was the best response we could manage at that time.
After much anguish I realized that if she were ever going to change, it would not be in a pressured environment. I decided that the best thing I could do would be to accept that this is who she is and not try to change her. In this way, I hoped that she would be able to stop fighting us. Then she could see the error of her ways and begin to change back.
I was partly right. When we stopped trying to change her, she did stop fighting us. However, it is we, not Kat, who changed. Her confidence in who she was remained constant. Everything about her said unequivocally, “This is who I am and it has nothing to do with you.” We had convinced ourselves that if she were gay, it reflected badly on our parenting. Much of our journey was coming to understand that it was not ‘our fault’.
The first part of our journey was accepting Kat. The last leg of our journey was embracing her exactly as she was and that there was no ‘fault’ with which to be concerned. The reward was realizing that she was still the same wonderful woman we always knew.
Sadly in 2011 she was struck by a very rare cancer which she fought against bravely for a year and a half. We lost her on September 23, 2012. It is still hard to write those words. Three years ago (at the suggestion of our wonderful grief counselor), my wife and I joined PFLAG to help us focus our grief in a way that helps us and helps others. Each time I am there, I am inspired by the love and raw courage of the folks who show up looking for support.
Many of our former community think we have been deceived and gone off the deep end. We have jumped into the deep end of the pool for sure. However, what I have found in the ‘deep end’ are many people who are deeply full of love and pain; people who are too busy loving their LGBTQ family to pretend they have their life together; and real people who just want a friend. This is the community I have longed for my whole life!”
September 23, 2015
Seeking Solitude
Today, September 23, 2015, is the 3 year anniversary of the loss of my youngest daughter. Every year on this day, I have taken the day off from work to honor Kat and to find some solitude. This year, I anticipated spending the week at the Well of Mercy, where I have gone on retreat a couple of times. When I called to make reservations, I learned that they were booked for an event and my plans were simply not going to happen. Rats! Time to create Plan B.
At that time, my cousin was preparing to walk the Camino de Santiago (he’s back now). Pretty quickly I began to think about my own “mini-Camino”; a backpacking excursion. Backpacking is something I have wanted to do at least since I was Kat’s age. With the help of my old outdoor-enthusiast-friend Gerry and my new friend, Paige (Gerry’s daughter who works with Outward Bound) I am doing it! Backpacking in Pisgah National Forest.
The plan is to be out 3 nights on the trail. No goals for mileage or anything like that. I have nothing to prove to anyone. I just want to be safe and find a bit of solitude.
I’ll have the camera, so there will be photos. I hope to write about it, but we’ll see.
September 29, 2013
This is Grief
Grief is not about the person we lost. It is not an exercise in doing what they would have wanted. Grief is for the person who is grieving. It is self care; a process of integrating the loss into our life. Just as her presence in my life changed the person I am, the loss of my daughter’s presence is changing me.This integration of loss is different from the integration of presence.
The integration of presence is like this… Her influence in my life was gradual. Like all my precious daughters, her presence influenced me constantly. It was not a forceful impact, but a natural change agent. Natural as in the things that happen day in and day out that cause us to love, tolerate, forgive, lead, guide, follow, forgive, empathize with, listen to, share thoughts & feelings with, laugh with, cry with, forgive… Without even trying or being aware of it, each of us is changed by the people in our lives. “As iron sharpens iron, so one person sharpens another.” This is what I mean by the integration of presence.
Unlike the gradual integration of her presence, the loss of her presence was sudden. A shock. Yes, we knew she was ill. We even knew at the end that she was at death’s door, but it was still an abrupt ending to a precious life and to all of the relationships associated with that life. All of us who loved her felt the shock. We all felt the pain. This is difficult to integrate. I don’t want to admit she is gone, much less surrender to it, and yet here I am.
Grief is not at all what I expected. I expected something unfamiliar. What I found was the same old me. I expected a deep sadness that would eventually go away. Of course I am sad at times, but grief is much more than sadness. Grief is a confusing mess of conflicting emotions connected with my loss. It is personal. Pleasant memories that sometimes make me laugh out loud, not so pleasant memories that I would rather forget, pain, emptiness (sometimes shared, sometimes held close) . It’s all part of the package. Each of us experiences it differently. No one has the right to say, “I know just how you feel.” Grief is personal! Even her mom and I are traveling very different versions of the same road. “Get over it and move on with life,” you say? I don’t know what that means. I have no doubt that it will soften as time passes, but when do you stop grieving? To be sure, we do not want to be debilitated by sadness and depression, although there may be periods where that is just what we experience. Grief, whatever it is, is a process that continues while we live.
Grief, whatever it is, is a process that continues while we live.
How is her loss changing me?
- Since she left us, I understand better how fragile and tenuous life is, which makes it easier to let others off the hook for the odd things they (and I) do. It also makes it harder to say goodbye to those I love.
- Sure, I still get upset about things, but I find that I get over them more quickly. Her illness and death have helped me understand better that the things I cannot change vastly outnumber the things I can change.
- I know about things that I never wanted to know about. When I hear that someone has cancer, I can’t help projecting my experience onto them and feeling the weight of what is coming for them.
- I still know the discomfort of not knowing what to say to someone, but now I also know how much it means to hear simple words of empathy. “I am so sorry.” or “I am thinking of you.”
One year has passed now and it still hurts. Sometimes it takes my breath away when I realize anew that my youngest daughter is not coming home. It still shocks me. It is still abrupt. It doesn’t happen as often, but the similarities with the initial shock of her death are striking. As much as we knew she was dying, her departure was still unexpected. Similarly, as much as missing her has become part of everyday life, that sharp pain of sadness still overtakes me when I least expect it. Just as there is truly no slow, steady movement towards death, there is no getting used to this, no getting over it.
This is grief
September 8, 2013
Living Presence
Each of us lives in the lives of others. Sometimes we are fortunate to witness a glimpse of our influence in the life of another person. It could be a word, a quote, a gesture, a choice of restaurants… and we smile to ourselves, “I know where that came from.” But the real treasure, the the beauty of recognizing the influence of another in ourselves, is available anytime anywhere, at the bargain basement cost of a mere moment of reflection.
I know that we live in the lives of those we touch. I have felt in me the living presence of many I have loved and who have loved me. I experience my daughter’s presence with me daily. And I know that this is not limited to those we know in the flesh, for many guests of my life shared neither time nor space with me.
~Elizabeth Watson (quoted in Healing After Loss-Sept 8th)
Reading this quote of Elizabeth Watson this morning, my thoughts went immediately to Kat and her influence in my life. She influenced me greatly both in her life and her death (that word is still so raw and painful). But how do I pin it down and definitively say, “This is how Kat influenced my life”? In answer to that question, in my imagination a picture appeared of Kat opening a door to a vast beautiful landscape. A garden with full, shady trees, wild grasses and beautifully colorful wildflowers. I step into this landscape which is now part of my world, always there for me to enjoy. Now that I live in this new world, I could try to name every aspect of this landscape to give her credit or I can simply say, “Kat opened the door for me to see life in a new and amazingly beautiful way. My life will never be the same.”
July 4, 2013
Becoming Real
Linda Robertson’s story, Just Because He Breathes, is not our story, but the parallels resonate deeply with me. It inspires me to share a little more of our story with Kat.
A Starting Place
When Kat came out to her mom and me, she was already deeply depressed, just unhappy with life from the very core of who she was. We felt like failures as parents. How could our daughter think she was gay? What did we do that was so wrong? If people knew that she was gay, we would be exposed for the horrid parents we truly must be. So we determined to silently endure while we sought a cure for her being gay. We weren’t ready for conversion therapy but hoped to be able to fix this ourselves.
I quickly realized that this was not going to be easy, so I formulated a loving strategy. For starters, I began to frame the problem as follows:
- Kat is depressed
- Kat thinks she is gay
- Kat has rejected her faith in Christ
- Kat has rejected her faith because she does not feel accepted as a gay woman by the church
- Kat’s depression is a result of the conflict she feels between the truth of God and her mistaken identity as a gay woman. Her depression is also related to the rejection of her faith.
- I do not like where Kat is. I want her to be well, well adjusted, happy and to know the truth of her (hetero)sexuality.
- The best possible chance for her would be for us to love her right where she was… completely without conditions. In an atmosphere of truly unconditional grace and love, she could begin to heal.
- It’s a risk. I might not get what I want.
Important Note: This is where I started from, not where I am now.
Somehow I set aside my beliefs about the “lifestyle” she was “choosing”. I honestly do not know how I was able to do this. I didn’t change my beliefs, just decided not to address them with Kat. It was as if I put them on a shelf in the closet (pun intended) and shut the door. My dogma was clearly getting in the way of Kat’s feeling loved and accepted. At that time, she felt more tolerated than loved. It was going to take genuine love over a long time to prove to her that she was truly loved and I was determined to do just that. It was more important to me that she feel loved than that I be right.
Becoming
It reminds me of this passage from The Velveteen Rabbit (emphasis mine)…
“Real isn’t how you are made,’ said the Skin Horse. ‘It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.’
‘Does it hurt?’ asked the Rabbit.
‘Sometimes,’ said the Skin Horse, for he was always truthful. ‘When you are Real you don’t mind being hurt.’
‘Does it happen all at once, like being wound up,’ he asked, ‘or bit by bit?’
‘It doesn’t happen all at once,’ said the Skin Horse. ‘You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”
~Margery Williams, The Velveteen Rabbit
Over a long time, bit by bit, Kat began to change. As I hoped, as I dreamed, she began to become her real self. She transformed from someone in the pits of despair to someone with hope. Sometimes I go back through photos of her and you can see the transformation in the images. It is amazing and wonderful to see.
Early on, I remember my wife asking Kat if she would she be open to becoming heterosexual in the future. Kat responded brilliantly with a question of her own, “Will you accept me if I don’t?” She was really asking if we truly loved her just as she was. Our question unintentionally communicated to her that a heterosexual transformation was an implied condition for acceptance.
Transformation
What I did not consider and I did not expect was the effect truly unconditional love for Kat would have on me. I began to see her differently. Although it was not my intention and certainly not on the agenda, I began to take the whole issue of homosexuality down off the shelf and wrestle with it (alone or with friends… not with Kat). What was it I believed and why did I believe that.
Bit by bit, this social issue became personal for me.
I think much of the pushback from the evangelical Christian community comes from the fact that this is still primarily a social issue. For many it is simply not personal. It’s easy to talk about “those homosexuals” when you don’t know any. It is much different when you know and love someone… and then it turns out they are gay. (For my friends who have a hard time with my stance on this topic, I ask you to turn off your defensiveness momentarily and replace it with curiosity and empathy. It won’t hurt, I promise.)
As I gradually saw Kat for who she was, I softened. As I wrestled with the sources of my beliefs, the sharp edges began to wear down. As I softened my dogmatic position, Kat felt more and more loved. As she felt more loved, she became happier and healthier. Lest you think this was a cheap way of making everyone happy, I assure you it was not. It was a long process over several years. I invite you to read about it here.
Finally
We lost Kat to cancer on September 23, 2013 (Read her journey on Caringbridge). The cancer was completely unrelated to her depression, completely unrelated to her sexuality. It was a rare version of cancer known as PNET. As her doctor so plainly stated up front, she did nothing to cause this. There was nothing she could have done to prevent it. As horrible as it sounds and as inexplicable as it is, it just picked her, plain and simple.
As much as we miss her, I am happy to be able to say that our discomfort about her sexuality was resolved well before she got sick. Somehow we were able to get to a place of loving her unconditionally. It often takes a tragedy to rock our world enough to help us see the larger picture. It didn’t have to end that way.
- What if we had chosen dogma over daughter?
- What if we had loved Kat with our words, but only tolerated her sexuality?
- Worse yet, what if we had rejected her because of her sexuality?
I am thankful that we chose the path of leaning into our own discomfort and taking the more difficult journey towards love and acceptance. I am thankful that our reasons for choosing this path were nothing less than our love for Kat.
When Kat left us, she knew she was loved by her family. She felt our love with every fiber of her being. What more could a parent want?
Update: In October, 2018 I gave a talk at TEDx Charlotte about my journey to accepting Kat’s sexuality. You can watch it here: https://youtu.be/GkUhpgrle1Y
May 13, 2013
The Wall is Down
The wall before
The wall is
down.
The wall was a creation for Kat made by some incredible friends. It was never intended to be permanent. I wrote about the creation of the wall in, The Room Built with Love. It was Sunday, September 16th when a group of guys gave up Sunday relaxation in order to help a friend in need. And just 8 months later it was time to bring friends back over to help take it down.
The reason for the wall was to create a private space downstairs in our house where Kat could live. She had decided it was time to stop chemo treatments, so we knew her time with us was short. We wanted to create the best possible situation for her. One of my friends said last night, “We wanted to create a fortress from which she could fight this dread disease. What we actually built was a space where she could die with dignity.”
We wanted to create a fortress from which she could fight this dread disease. What we actually built was a space where she could die with dignity.
This wall was that and so much more. It was a symbol of the love of friends and family and a reminder of the loss of our precious daughter.
For me, the painful reminders of loss are not so constant as they were. There are fewer and they are further between. But they sneak up and ambush me when I least expect it:
- Seeing the Bananagrams game in a store. No one could beat Kat at Bananagrams!
- The wave of grief in the middle of my shower as my mind drifts back to the long, hot showers that gave Kat some small amount of relief.
- The joy and sadness curiously cohabiting in me while listening to children’s music with my granddaughter and they play, “Down by the Bay”. Little Katie would laugh as she sang over and over, “Did you ever see a bear, combing his hair, down by the bay?” (video below)…
How can things have gotten so bad that the best gift my little girl could hope for was a wall that gave her a place to die with dignity? She had such hopes and dreams! I had such hopes and dreams for her. Her life was cut way too short.
I just want a Kat hug. I miss her so much!
For those who want to know about Kat’s journey with PNET, these links will help:
- Caringbridge – http://www.caringbridge.org/visit/katanderson
- Writings here about Kat – https://jimazing.com/blog/category/kat/
February 20, 2013
Sometimes You Just Know
Did you ever know something was true, but it just didn’t feel true? Walking through Kat’s illness with her, most of the time, I felt useless or close to it. I wanted to make her better and I could not. Just sitting in the hospital room with her day in and day out seemed like something that anyone could do. I was just taking up space. Deep down there was a rational part of me that knew it was not true, but I frequently felt otherwise.
But sometimes you just know. Like the back rubs…
Kat loved my back rubs. We had a physical and even a spiritual connection when I rubbed her back. And as a bonus I actually felt my own unique value. When the pain was unbearable for her and it was not yet time for more meds, she would have me press into her lower back with as much effort as I could. Sometimes I would use my elbows to dig into the muscles in the small of her back. However hard I pressed, she could always take more. When she sensed that I was getting tired, she would remind me that she was not going ask me to stop. I would have to decide for myself when I could not do any more.
It puzzled me how a back rub could help this pain in her abdomen. It was clearly not medication and did not make the pain go away. But I knew it provided some kind of relief because she kept asking for me to do it. I asked her once how it helped. Her answer surprised me.
She said, “You know how when you have a tooth ache, you can bite down on something and it brings some relief? It doesn’t take the pain away, but it somehow dulls it. It’s like that.” That I could relate to.
As I rubbed her back, my mind would wander. Many times when I would be so ready to quit, I would think to myself that one day I would long to be able to do it again. Now through my tears, I recognize that that time has come.
There was a short time after her chemo stopped when she was feeling better. She still liked to get back rubs, but she would ask for a “regular” back rub. The photo above is a “regular” back rub. The cutie rubbing my back is Kat’s niece, Molly (my grandjoy). This was not the hard pressing on the back that she wanted during the worst of the pain. Once, I demonstrated the hard back rub for her. As soon as I pressed in with my elbow, she told me to stop because it hurt. She could not believe how hard I had been pressing on her.
Love Language
When Kat was a teenager and deep in depression, Jeanie and I were desperate for some way to connect with her. We found help in a book named The Five Love Languages for Teenagers. It’s part of a series of books based on the idea that there are five basic ways that people can give and receive love: Gifts, Acts of service, Words of affirmation, Quality time and Touch. This book helped me to think of new ways to lovingly connect with her during a time when she was not very easy to love.
Somehow I determined that Kat’s primary love language was Touch. The conundrum was the fact that as a teenager in the throws of depression, she did not want to be touched. Someone who loved to be touched and did not want to be touched. Ugh! Over time, I carefully experimented and found that a well timed tickle or wrestling match sent her a message that she mattered to me and that I loved her. I would walk into the room where she was and wave my arms around like Morpheus from the Matrix in preparation for a fight. Then I would do the gesture with my fingers inviting her to “give me your best shot”. If she was in the mood, we’d have some fun. I had to be careful though. She would beat the tar out of me if I did not escape.
When she got sick and first started asking me to rub her back, remembering her love language of touch made it even more special for me. Not only was I meeting an immediate physical request and need, but there was an emotional (even spiritual) connection of love in the very touch of my hands on her back. I felt needed.
Coaching Kat
One night I both understood and felt that I played a part that no one else on the planet could have, but before I tell you about it, I need to set it up… Kat had moved back to Asheville during the Spring and Summer of 2012 when she was feeling better, but the pain had returned. She was becoming less communicative and that had us worried. On Monday, September 10th, Jeanie drove to Morganton to see Kat’s sister, Danae. Morganton is halfway to Asheville so when she left Morganton, she continued up the mountain to check on Kat. She found that Kat was not doing well at all. Her pain was escalating more rapidly than expected and was more than her prescriptions could touch. So she stayed with her for the night. That night it got so bad that she was taken to the ED at Mission Hospital in Asheville.
The next day, they transported her via ambulance to Duke Hospital in Durham. That was to be the last time that she would be in Asheville. Jeanie sent her off with the transport team in Asheville and I received her from them at Duke. I don’t think the transport team had ever experienced a hand off quite like that before. Jeanie and I were a great team fighting for Kat.
That night, the focus was on getting Kat’s pain under control using a PCA machine. The PCA gave a continuous dose of pain meds through her port, but also allowed her to increase the dose by pressing a button to get more (a bolus dose) whenever she needed it… (but within limits). They limit it four ways, the continuous dose, the bolus dose, the minimum time between boluses and the maximum dosage in a given time. It took time to get her stable, but by late that night, they had increased Kat’s meds enough that she was finally resting and so was I.
The interns who were on duty that night were doing a terrific job. But, they did not know Kat and did not understand how she needed to be approached. They are trained (for good reason) to try to give as little pain meds as possible that will do the trick. If they give too much, it could kill her. They were about to learn some things about Kat…
Around midnight, I was awoken by an annoyed Kat asking her nurse what she was doing. Some patients are completely trusting of the medical staff and never ask questions. Not Kat! She always wanted to know exactly what was happening and why. Her nurse explained that she was changing the PCA machine to turn off the continuous dose completely. Kat went ballistic! She was extremely angry and frightened. She knew from experience what was coming with her pain. Through tears of fear and pain, she reasoned with the nurse that without the continuous dose, she would fall asleep which would cause her to miss an opportunity for a bolus. Without the bolus dose, she would wake up in excruciating pain. Then it would take extra meds given directly by the nurse and lots of unnecessary time and pain to get it back under control. Kat’s voice was the voice of experience begging her to not do this.
The poor nurse’s hands were tied. She had to do what she was ordered to do, but she was also sympathetic to Kat’s plea. I was in full agreement with Kat and I asked the nurse to let the doctor know that we wanted to see him or her. She agreed to call them in.
As far back as I can remember, Kat had a short, hot temper, which got her in plenty of trouble when she was a youngster. When she was a child, this seemed like a character flaw that we were somehow supposed to fix. At the very least, it was our job to help her overcome it. During our journey with her through this illness, I came to see her anger in a different light. This “character flaw” was actually the flip side of the very strength she was able to tap into to fight this awful disease. What we saw as a weakness was actually one of her greatest strengths.
There in the room after the nurse left, Kat was as angry as I have ever seen her. I (on the other hand) was drowning in helplessness. Here was my daughter in horrible pain, dying and not a damned thing I could do to make it better. She and I both know what needed to happen, but felt powerless to make them change it. We both knew it was going to be a long, painful and sleepless night. I was already rubbing her back hard in order to help her through it.
In that moment, I had a eureka moment. I am not sure how it happened, but it came to me that there was something that I could do. Kat needed me to help her in a way that only I could. In a flash, I was on. I changed roles from hand-wringing bystander to life coach. I affirmed her anger and her reasoning. I let her know that I agreed with her about what was happening and what needed to change to make it better. She needed to have this order reversed so that she would not miss the pain meds she needed and I was ready to help her fight for it.
Then I told her something that she did not expect. I told her to hold onto that anger. It was just the tool to help get what she needed. I coached her to talk to the doctor the same way she talked to the nurse. I had noticed that she was usually more aggressive with the nurses than the doctors. In that moment, I had objectivity that she did not to know that this was not the right time to be deferential. Her emotion would communicate an urgency that reason alone could not.
Thankfully, the doctor was there before we knew it. She stepped in and introduced herself and asked how she could help. Kat let her know just how upset she was about the decision to turn off the continuous dose. She rationally explained her reasons, but also with passion from fear of the coming pain. I was so proud of her.
The doctor listened to her and explained that another intern had made the decision earlier to stop the continuous dose. She explained his reasons for making that decision. Then without hesitation, she said that she agreed with kat and would reverse the decision. Then she left to do just that.
By this time, I was lying on the bed next to Kat rubbing her back. She was sitting with her legs hanging off the side of the bed. My arm and shoulder were sore from pressing so hard, so I used my leg to push against my arm in order to give it some more pressure. While doing this, I began to talk her down. I told her that the anger had done its work. She was getting exactly what she asked for. Holding onto the anger was counterproductive at this point. Gradually she calmed down and soon the nurse came in and put all to rights again with the PCA meds.
That night, I had a feeling of accomplishment. I was the only person in the whole world who could have done that for her. In no way do I mean to diminish what anyone else did for her in any way. I could surely have never fought for Kat the way Jeanie did, but in that moment no one could have fought for her the way I had either. No one else there knew her the way I did. My investment in our relationship laid a foundation of trust that allowed me to speak frankly and guide her. It was a moment when I felt the truth that was true all along. My presence mattered. Sometimes you just know.
January 21, 2013
Dark and Stormy Night
The storm was coming in from a different direction than they normally did. I was inside the house and noticed that the sky outside looked odd, so I went out to investigate. I have seen lightening before. I have even seen lightening go across the sky within a cloud before, but I had never seen anything like this in my life. The lightening was streaking from the distance halfway across the sky. I am not sure of the year, but it was sometime in the early 90’s.
I called the family to come out and see, but Katie (aka Kat) was the only one who joined me. Maybe it was because I have a history of getting excited about things that others find dull. In any case Katie and I watched this storm in the distance as it sent lightening bolts across the sky for 20 minutes or so before the wind picked up and the actual storm reached us. Fortunately I got my camera and tripod and seized this opportunity to get a good photo.
Katie and I tried to persuade the others to come out and see the show, but they never came. I asked her a few months ago and she did not remember anything about that night, but it is fixed in my mind as a very special shared experience with my precious Kat. I will always treasure this memory. and I am happy to have this photo (that I just uncovered while doing some organizing) as evidence (click the photo for a larger image).
Jimazing Thoughts 
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