Treating Disease with Compassion

This post is in response to Elizabeth’s question about how to treat disease, addiction with compassion. My practice comes from two teachers. The first one is Steven Levine. He is one of the most balanced spiritual teachers I have every come across. You can get a feel for him on this website, Thinking Allowed. Then go have fun on Soundtrue.com or Amazon. One of the things I’ve learned from him is to send lovingkindness and compassion into wounds and illness. Notice that when you get a cold, you get mad at it. You stub your toe, you curse it. This is sending hate and anger into the wound. Instead, send lovingkindness into the wound. Send compassion, which means doing the concrete things it needs to relieve suffering. This helps you to relate to the pain, not from the pain.

The next teacher is Pema Chödrön. She teaches a Tibetan practice called tonglen. The basic principle is to breathe in what is hurtful, painful, in yourself or others. Breathe this into your heart, into the depth of your soul. Breathe with your whole body, your skin. Then breathe out into the pain what it needs for healing. I like this practice because it affirms the inner divinity of people. When you breathe a wound or evil into your heart, you are breathing it into God. There, in your heart and God’s heart it is transmuted, healed, transformed into good. Breathing out, into the pain breathes God and our own compassion into the pain, the evil. This helps me to open to my own pain and to not be afraid of another's pain. There are other principles around the practice of tonglen so do go to the website.

Now Pema teaches this practice without using the word God. In my humble opinion, Buddhists talk about God a lot without naming God. They teach us how to love and God is love. To me, the New Testament tells us what to do – love. The Buddhists tell us how to do it.

Post Chemo Day Two

In nursing we have a terminology to mark the days of recovery from surgery. The day of surgery is called, the Day of Surgery. Ah, here is a piece of jargon that clearly says what going on. Say to anyone “Day of Surgery” and they’ll know what you mean. Then we get into the days following surgery. We call them post-op day one, post-op day two, and so forth. What might be a little confusing is on post-op day one, you’ve already been into the surgery-recovery process two days! This may go back to the problem the human mind has with zero. Zero tends to mean nothing or no-thing. But zero can also mean a starting point. When we count down for a rocket lift off, the lift off doesn’t start at one. It starts at zero. Day of surgery is Zero day, as it were. So in our human minds, sometimes we start counting at one, and sometimes we start counting at zero. It can be confusing.

Still, the terminology can be useful. Day of Surgery is an important day with its own unique characteristics and events. You go in for surgery. You get striped down to that silly little gown or huge gown, depending on body size (one size fits none). They put you under. You get cut on. You wake up in recovery. That only happens on Day of Surgery. I think you can extend this paradigm to chemo therapy.

From this point I am speaking mainly from my own very recent experience. I have worked in General Surgery, taking care of patients after their surgery. I have not worked in oncology, taking care of cancer patients, though I have had some training in that as part of my nursing education.

Day of Chemo – you go in. The nurse starts an IV on you, takes you vital signs (pulse, respirations, blood pressure, and temp.) and starts to pump a variety of chemicals, medicines into your body. You sit or lay back in big, fairly comfortable chair for a number of hours while the medicines are pumped in.

On my first Day of Chemo, I knew this going in so I brought school work to read – on Pastoral Theology no less, and a cassette tape to listen to if I liked – David Whyte’s The Soul’s Desire. He has a cool website, great one for the poet seeker in us. I also brought a CD player and Hildegard of Bingen. So I was prepared.

What I wasn’t prepared for was the need for conversation, conversation between me and Teresa – very important – and the need for conversation between me and the nurses who took care of me. So I didn’t get 4 hours of study done but other work, important work was done.

Day of Chemo went really well. I felt great, just maybe a little strange after a good 1000 cc’s of fluid and chemicals pumped into my body, but nothing big. I did work with visualization and relaxation and prayer and things were cool. It was like, is that all there is? Wow.

Then came Post Chemo Day One. I gained seven; yes count them, seven pounds. My legs felt like tree trucks. I called my doc and felt a message on her machine at 5 AM (That’s when I usually get up). As the day progressed I felt worse and worse. My stomach hurt, I was very tired. I did what I could. Doc called back at 11, ordered some Lasix for me, and later that afternoon Teresa was so kind as to drive into Richmond (20 minutes to 30 minutes away, depending on traffic) to get the med for me. I’m glad she could do that. By 3 o’clock I was feeling pretty puny.

Now it is Post Chemo Day Two. I’ve lost eight pounds. The Lasix worked. Doc ordered it PRN, as needed, so I’m not going to take it today to see if one dose is sufficient.

So much of medicine is trail and error. This is a fact of life and as a patient and a nurse, I’ve learned to go with that. Aye, I do wish we could just take a test, get the med and be done with it. Life and health just don’t work that way a lot of the time. Sometimes they do, though, and that’s the confusing part. I think the key thing is to be in relationship with want you are seeking to heal, not just take the med and ignore it.

God knows though, I’ve done a whole lot of ignoring with my disease process. Ignoring it is not all bad. It’s not good for the disease to run your life. The thing is to be in relationship with it in a right and proper way. It does have a place in your life. It’s there in your body. Relate to it with lovingkindness and compassion. Your heart will then feel the way forward for healing. This is easier said than done. I know from experience. It takes practice. Our culture does not teach this. And I am shamed to say my institutional church does not teach this very well. I have yet to hear a sermon about treating illness with compassion and lovingkindness. You can find the teaching in the Episcopal Church if you dig for it. I have, but I had to dig. I got this teaching elsewhere. Then I could see it in my own tradition.

So this morning I’m feeling better, but still a little puny. Hopefully with some more rest I’ll be back up to speed. I find peace though, when I return to this fact that God sustains me and loves me in my puniness. When I rest in that puniness, let go into the puniness, healing comes forth, not just for me, but for the whole world too.

Medical Update - Chemo went well

My apologies to my regular readers. I’ve left you hanging since my last post. It’s been an intense time. I’ve had a case of shingles, which thankfully did resolve nicely since I got on medication right away. This did delay the start of treatment for kidney disease though.

I finally got all my results back from the tests on my heart and lungs. Pulmonary function and my heart are normal. Several years ago I had an echo cardiogram that showed a mildly prolapsed mitral valve. That is not there now. Way cool. I have not had any more episodes of shortness of breath and my endurance and energy is better.

Also, there were still fears and anxieties around the Cytotoxan that I need to work through. I needed to reframe the way I thought about Cytotoxan. As a nurse, I am aware of the serious side effects that may come with Cytotoxan. Cytotoxan also has healing properties (that’s why it is prescribed). I have been able focus on those properties and I have sought to put on the mind of Christ about this whole matter.

Yesterday I had my first treatment and it went very well, thanks be to God. There was no nausea or other reactions. (Phew!) This therapy is truly a process and other side effects may not become evident until later. I have a whole slug of people praying for me, here in Berkeley and the whole seminary and in Boise and elsewhere. I take those prayers into my heart and clam the healing and love that is there. This is something I did two years ago when I was so very sick. Now I can do this at an even deep level. This is the joy of spiritual practice, it does improve with practice!

I’ve added a new link down in the Links of Note section. It’s called Alicia's Story - Cancer, Despair, Hope and Faith. Alicia is a reporter for the San Francisco Chronicle and is blogging about her journey with cancer. Hers is an amazing story and will worth following.

Peace to you all and be well

Duckedness, Angels in America and Brokeback Mountain

This post is in response to some of my sweet brother's comments.

Duckedness -- ever heard of the expression "odd duck"?

Why I'm in seminary.

I am pursuing a Master's in Divinity and perhaps a Masters in Theology. God willing, I hope to be ordained a priest for I feel that call in my life. I'm here seeking to be faithful to God's call in my life and continue to work that out, day by day for love of my Beloved Savior.

Angels in America -- living life on one's own terms.

As a nurse, I learned it is better to have a patient partially due healthcare behaviors than to do none at all. It is far better for an individual to choose to live life on their own life-affirming terms them blindly follow the terms of the prevailing culture. Prior may a life-affirming decision and chose to live that out. He was not saying “my way or the highway”. Yes, for the Christian the goal is that we choose to live life on God's terms. Pryor was not anywhere near that place in his life. Yet in Pryor's decision to affirm life he was certainly pointed in the direction of God's will for him and for all of us that we should affirm life. I think of the Second Vatican Council’s definition of the people of God. Tthey started out with defining Roman Catholics as the people of God, and then they expended the circle to Protestants. Then they expended it to include anyone who believes in divinity, and finally to include those who seek to do good in life.

Dear brother, I think you are misconstruing the "homosexual agenda". Our agenda, such as it is, is to have equal rights of every other human being. It is not that everyone should become gay. You seem to be basing your conclusions on the most extreme aspects of homosexual culture that the religious right likes to highlight. You have not listened to the thoughts and feelings, the fears and aspirations of the majority of homosexual people. I suggest you read Mel White’s Stranger at the Gate: To Be Gay And Christian In America. Follow that with The Good Book: Reading the Bible with Mind and Heart by Peter J. Gomes. I think these books can help you to better understand the struggles gay, lesbian, bisexual and transgender people go through.

Brokeback Mountain

Concerning Brokeback Aountain. Aye, I felt homesick too watching that too. As I've hides in camps in raises very much like those in the movie. That Wyoming town could have been an Idaho rural town. I enjoy Berkeley, but oh, I do miss Idaho.

To me, the movie is a tragic testimony of what happens when people are not allowed to be who they are created to be. If our culture would allow people to be who they are those young men could have had the option of forming a committed relationship and not be forced to into false marriages. Their lives were tragic, not because they were homosexual, but because society did not accept them. This injustice still continues today, and it is a sin.

For all you readers out there, obviously my brother and I disagree on a few things. But he loves me and I love him and we both love Jesus and that's what counts. We both seek to respectfully disagree with one another when there is a difference of opinion.

Medical update

It’s been two weeks since I last reported on what’s going on with me health wise. Physically, nothing has really changed. I've had all the tests and now wait to see the pulmonologist Thursday. Emotionally, though there's been a shift. I've been really struggling with the whole issue of Cytoxan versus CellCept. I call my nephrologist in Boise to get his opinion on this. My nephrologist here in Berkeley, Dr. Yao, from the beginning as has wanted to use Cytoxan. Two years ago, I went into kidney failure and CellCept have worked well to put it in remission, along with high doses of steroids. To me, it made more sense to go back on the CellCept. I was very concerned about the potentially harsh Side effects of Cytoxan and would much rather deal with the milder ones of CellCept.

I finally heard back from him in the form of voicemail. I heard him say that he thought the CellCept would be OK. I e-mailed my nephrologist here in Berkeley, telling her of my strong preference for CellCept. She e-mailed the me back that she had talked with my nephrologist in Boise, and he said that he actually would have used Cytoxan except I preferred CellCept. She expressed concern that the CellCept would not work as well as previously since I have protein in my urine.

I was surprised that my reaction to her e-mail. I felt peace. Both of my nephrologists first choice of treatment was Cytoxan. I could understand Dr. Yao's reasoning. So I will go with the Cytoxan therapy, if my pulmonologist doesn't see any contraindications.

This is a really heavy decision, And also an exquisite opportunity to walk in trust with God. I'm not sure where this will all lead. I do know that wherever it leads God will be there, and Mary and Jesus walk with me on the way. I don't know how this will affect my academic studies.I just have a strong sense to start the semester and deal with things as they come out. I really believe that sickness is a teacher, not a punishment.Frankly, I rather have a different teacher, but this is the one God has given me. In here and become really Anglican, for I also believe that God does not inflict people with illnesses. Yet I say God has given me this illness as a teacher. The theology gets messy here. I see the contradiction. I haven't worked us all out in a nice neat package. I hope that as I walk this path, I will find better words to express this exquisite difficult and grace filled mystery.

So stay tuned. I will be writing more on this, but I'm going to switch topics in my next post. I want to respond to my brother's comments about Brokeback Mountain (look on the Monday, January 09, 2006 post) and then an earlier comment he had on Angels in America.

What’s a seminarian?

Just in case someone stumbles on my blog and wonders what a seminarian is, let me explain. The American Heritage dictionary defines seminarian as a student in seminary. This is a very simple definition and may help to demythologize some of the connotations around the word seminarian. Sometimes I hear that word spoken in the hushed tones of churchy reverence. Well, in my home state of Idaho, LDS high school age students attend their church's seminaries, which are often right across from the town’s high school. So for a lot of folks in Idaho going to seminary is no big deal.

However, if you're not LDS going to seminary is a big deal. It can cost a lot of money. Seminaries accredited by the Association of Theological Schools expect you to do graduate level work. In my seminary, not all seminarians are studying for the priesthood. Some are working on masters in theology. Some are working on a certificate in Anglican studies. Some are working on doctorates. I think this helps keep people from getting all wrapped up in the ordination process. For me it is wonderful to see people studying theology for reasons other than ordained ministry. The people I study with here at CDSP are at all kinds as different places in their spiritual journeys. We have one thing in common or so it seems to me. We have an affinity for God and things religious. This group of folks takes this seriously, but thankfully not too seriously.

Angels in America

Teresa and I finished watching Angels in America last night. I highly recommend this to anyone with interest in the gay community. To me, the most surprising part was the Mormon characters. I had heard about the closeted gay Republican character but didn’t recall that he was Mormon. I found him to be a quite likable character, in that he was struggling to come to terms with his sexuality and as honest as he could be about why the struggle was so hard. His Mormon mom comes off as one of the most compassionate of the characters. I had to wonder what is like for a gay man in New York City to view this amazing movie verse me, a lesbian raised in very Mormon Southwest Idaho.

I have a lot of respect for the main hero in this story, Prior. Even though angels tell him how sucky life is and that it will get worse, Prior wants to live. Even though they offer him a way out of the suffering, death, Prior, with eyes wide open and in defiance, chooses life and demands a blessing. He will live life on his terms and live it fabulously. Isn’t that the drag queen battle cry?

There is a lot of religion in this show – Judaism, Christianity, Mormonism. Even the Hare Krishnas have a cameo! It’s kind of like This American Life, a very good secular radio show and it has a lot of stories with reference to or about religion. We really are a very religious country.

There is a lot in this movie, beside that fact that it is six hours long – don’t try it in one sitting! I think it ought to be standard fare in any queer theory course. I think it would be good for high school age youth groups. It would be great for Adult Christian Ed. If you haven’t seen it, get the DVD, a big bag of popcorn and enjoy!

Further Developments

I only saw one of the two docs these past few days. One canceled the appointment as I was on the way to the clinic. The other was with a pulmonologist. I had a chest x-ray the day after Christmas and it showed I had interstitial changes in my lungs. We are now in the process of determining the degree of changes going on. I will have pulmonary function tests the 24^th and see the pulmonologist the first part of February. The hard part about this is there has been a progression of the Mixed Connective Tissue Disease (MCTD). How much we are in the process of figuring out. Waiting for test results is part of the life of a person with chronic disease. It truly can be a trial but I heard something on a PBS show that has been helpful for me.

It was a show about a Benedictine women’s community. The sisters in this community are very aware that they are in a transitional stage in their monastic life. One of the sisters called it a liminal time. Liminal means being situated at a sensory threshold or being at that place where something is just start to break into one’s perception. Such a place can be a place of great spiritual growth if one is patient and open to what is taking place. The hard part is not knowing yet what is coming into one’s awareness.

A liminal time is a time of letting go of old perceptions or ways of being or doing, to open to the new thing that is coming forth. In terms of my concrete situation, this means letting go what I thought my health status was and opening to what it is now. The hard part here is one’s health status is really quite fluid. It takes wisdom and courage for me to face what is going on in my body. It is very helpful for me to have trust in God’s sustaining love at work in this process. Now it would be very nice if God would just up and heal me of this disease, but that doesn’t seem to be on God’s agenda right now.

The one thing I do know that is on God’s agenda is my spiritual growth and transformation in Christ. This disease is an exquisite opportunity for such growth. Working with my body and with this disease, learning to be compassionate to myself and extending to my body loving kindness and mercy is a foundational part of the spiritual path. It is not easy but working with disease from this perspective makes whatever happens a win-win situation. Really. The glory of the cross and resurrection is disease, tragedy does not have the last word in our lives. The Good News for those living with disease and disability is God can be just as glorified in the way we respond to the disease as those times when God does bring healing. We all love the miracle stories, and they are very real, but God doesn’t always choose to work through miracles.

I continue to pray for healing. I continue to do what can to be healthy. I find peace in my commitment to Christ and my seeking to do His will, whether that be great or small. It’s going to be interesting to see how this turns out, so stay tuned and peek back.

Two Great Endeavors

The tone of this blog is going to get a wee bit more serious now. I have Lupus, or more precisely, I have Mixed Connective Tissue Disease (MCTD), but that is a mouthful to say and takes longer to write. Lupus will do, thought MCTD will also work. I was originally diagnosed with Lupus in 1985. Sometime around 1990 I developed problems with swallowing and that lead to the diagnosis of Mixed Connective Tissue Disease. The swallowing problem was successfully treated, however, I will be on prilosec or similar drug the rest of my life and I need to do the self care stuff one needs to do when one has G.E.R.D.

I share this information with the world in this blog in the hope that as people follow how I deal with MCTD and also how I deal with seminary, they may learn some things that will help them in their own life. The lessons I learn from these two great endeavors: optimizing my health in the face of serious chronic disease and being formed in seminary, to have carry over for regular folk in ordinary life.

One lesson I am learning from MCTD is life is very precious. This is a wondrous truth that good for all folk to enter into and live out of. It is not just good; it is really quite amazing and at times quite fun. I will expand on this later but for now, I want to post this and get on with my day. I have an appointment with my internist today and we will discuss how to coordinate the committee of doctors I now have providing my care. That is one of the down sides of Lupus or MCTD. These diseases can affect multiple organ systems and sometimes you do end up with needing committee of specialists to provide for your care. Making sure they are all taking to each other can be a challenged. I am in the Kaiser system and all my docs are Kaiser docs so in theory they should all have access to my one medical record. I have yet to verify that and will do that today and tomorrow with the two docs I will be seeing. Stay tune.

Me, September 2005, happy to be at CDSP.

The moving truck parked outside our apartment. 

Teresa and new found friends Kim, Sam and Lynnae helping us unload the moving truck.

On August 10, 2005, I left Boise, Idaho, my home town and chief place of residence for most of my 50 years, to move 637.1 miles away (thank-you Yahoo! Maps ) to attend seminary at Church Divinity School of the Pacific in Berkeley, CA. I told folks I would keep in touch, but really, my beloved partner, Teresa has been doing a better job at this than I. I'm starting this blog in hopes that it will be an effective and fun way to keep in touch over the next few years.

If you have nothing better to do right now, do a google search on seminarian blog. My there are some very interesting seminarian blogs out there! Most seem to be Catholic, thought I have not done thorough research on this. With some you can tell the seminarian ran out of steam. Others are pretty darn thought provoking. Still others are mainly a place for the blogger to vent steam. I hope my blog will be interesting, thought provoking. Now there will probably be some home movie type stuff in it but I hope I can make that entertaining for you all.

This blog is, like all blogs, a work in progress. So peek back often. God willing and the creek don’t rise, it will be worth your while.