Vulnerability and Power

I was asked to give a talk in Australia in November 2017 at a workshop on “Faith & Disability” at a Christian College, Alpha Crucis. It was an academic environment but also a very personal and reflective experience as I worked through what I was going to share. Something I heard on Sunday morning just a few days prior to speaking, struck a cord with me. The pastor quoted from Andy Crouch' book, Strong and Weak, "Jesus death and resurrection shows that the idea that we can have power without vulnerability is a fantasy."

I have struggled with this idea of being vulnerable because to get ahead in academia and particularly medicine you cannot show your weaknesses. It is so competitive for grants and the best graduate students and the right number of research papers each year....it is exhausting. I've worked hard to Prove myself in my work world that it carries over into my faith world. I try not to belabour on how hard things are at times. I don't always share what is really going on with my prayer group or family members and then feel frustrated later when I don't feel people are understanding what I am going through. I don't want to be a complainer. However, Brian then says, if you don't tell them, they won't understand. I don't want to be more vulnerable than I already feel I am. It is really hard to be weak and so dependent on others at times.

Jesus came into our humanity even though he could have come blazing into our world in might he chose to come as a baby in weakness needing complete care by a mother and father. I now more than I used to, need Brian do to so much for me. He is my main caregiver.

I asked Brian, my husband, what it is like to be my caregiver and he said that to be my caregiver, he must become weak with me. He has to set his expectations to my limitations if it is going to work. It is like when Scouts go on a hike. They set the pace to the slowest person. The slowest or weakest person becomes the leader. My friend in Australia who took care of me following the months after my car accident, said that the whole family's life had to shift to accommodate my life's needs in order for me to live as, well as could be. The weakest person in the house was setting the pace for the whole household. It’s like when a new baby enters the home. Almost everything revolves around that infant.  Jesus too totally altered the lives of Mary and Joseph. But then his weakness on the cross changed humanity forever with the hope of our resurrection and a new earth with his second return.

We need the weak in our communities to become the leaders either through needing lots of care and setting the pace for others, or because their lives bring a dimension to our communities that represent the voices of so many others who may not be able to share or speak up. God needs their voices just as much as he needs the trained leaders. God uses us all in His Kingdom.

It is in our weakness that He shows His power.

To Fight or Persevere

Fight or Perseverance

We hear a lot about fighting cancer and other illnesses. I think the “Think Pink” people who started the whole fighting breast cancer really pushed the idea for patients to fight the disease and not let it conquer them. People became cancer survivors. The pink ribbon - fight caner images have flooded the media over the decades.

This fighting attitude became expected especially among women going through breast cancer treatments. Women have made great gains in the working world, taking leadership roles such as Margaret Thatcher, Oprah Winfrey, and Martha Stewart. It seemed it was expected that women could do it all, including fighting cancer or all the campaigns to fight FOR cancer research. We have heard it all the time that we can conquer cancer!

It’s been great for the all the advances that have been made in cancer treatments and especially breast cancer. Now we know so much more about different types of cancers and how they progress in different ages and genetic make ups of women (and men). Targeted therapies for each type of cancer give us five-year survival rates into the high 80 to low 90%. For ten years it may drop about 5-10%, but that is still good odds.

This “fighting attitude” may be a good thing at the onset to face what they have to go through, but is it sustainable for a patient going through it? Humans are created with a special fight or flight response built into us which give us an extra kick of adrenalin designed to get us out of the way of danger, or fight it. The challenge with many medical conditions is that they become chronic and one cannot maintain the “fight” forever. An initial fight is good but when do we switch to a steady-as-you-go pace that is long lasting?

The myth that has challenged me the most about breast cancer fighting is that once the initial treatments are over- you are good to go!  Right? You did it! This is far from the truth. It’s more like yes, you battled the monster and scared it away for now, but it left you beaten and scarred, bruised and worn, shaken and fearful for its return. Your body is not the same after the surgery, meds and radiation. You have to learn to do things differently. The meds leave you tired, in pain and weak. Yes, you may be “still standing” but sometimes, barely, it seems. This is where perseverance kicks in.

The clinicians are really good at getting you through the first phase of fighting because that is what they are trained at. They are trained to save lives! We need this, but the next stage of keeping you going can sometimes feel lost. How do we encourage your patients or your friends to keep the steady pace of a new life, and to not always fear the monster that might get them again.

The Webster dictionary defines perseverance as steadfastness in doing something despite difficulty or delay in achieving success. It is interesting that the use of this word has decreased in our literature by 85% to what it was used 200 years ago (Google books). We do not talk about persevering through difficult times because we want and can sometimes get a quick fix to our problems. We’ve lost our ability to talk about persevering.  Those that need to keep going even when it is hard, lose the encouragement from this language shift. Life isn’t about quick fixes. We cannot always stop the pain from an illness (physical and mental), or from a loss of a family member or friend. Life does hurt and we do need to persevere through the tough times. We often need to find ways to walk through really hard things that may never go away but will remain with us for the rest of our lives. How can we bring back the idea of perseverance?

Two hundred years ago people were dying from all sorts of diseases, mainly infectious, such as cholera, diphtheria, and Typhoid fever. Their long-suffering was watching people die all around them, persevering being left alone to manage on their own. Life expectancy was between 30 and 40  yrs of age while now we are celebrating 100 year birthdays at at amazing rate. We may have increased life expectancy with our modern medicine but it comes at a cost of more people now needing to learn to live with chronic conditions. Our ability to fight infection with antibiotics has made the biggest difference. Now we need to work on walking alongside people as they,  you and me live with the "benefits" of surviving and persevering with the fatigue, pain and heartaches that surviving gives us. 

Good grief!

I have to say that lately the theme from friends, family and colleagues is the challenge of grieving or letting go. There are cycles in life that we move through. There are times of new growth and vitality that are so energising and exciting: getting that first real job, finding your true love, seeing families grow with little ones healthy and strong. It all seems like it will last forever. Life feels good. Then you hit a stage in life when suddenly you begin to face loss. Some feel that earlier in life while others experience it much later. It doesn't seem much different  when you lose a parent, it's hard. I lost my mom as a teenager while others lose their parents in their 50's or 60's. The grief is still there. I've watched many of my friends or family members having to let go of their children as some get married and move away from home, others going through illness, and one even from death. Grief feels so close. Some people are grieving loss of financial security while others the relationships they have had with their parents. Their parents seem far off from today's reality, thus connecting with them seems hard.

I have grieved the unexpected loss of function as the breast cancer drugs weaken my legs. Now I can only walk in the home. I fall more and I cannot rely on my legs to do my little walks around the block. I don't have the energy I had so I must figure out a new normal to how I approach life at home and work. Again, it is letting go. Friends around me tell me they can't run anymore due to back pain or their eye sight is getting worse. We are constantly dealing with the changes around us and the changes in our own bodies. Life is always in a state of flux but we have a hard time adapting to it. We struggle to hang on to what we know....why? Fear.

We want to look back at what we had because the fear of living without..."x"...... seems so scary at times. I am scared too at what the future may bring, however if I keep hanging on to what I was or what I had, instead of looking forward to what is still to come I will miss out on the new gifts life will bring. This looking forward is hard when I keep hanging on to the past. What is it that will keep me looking forward......HOPE.

When I was diagnosed with cancer 7 months ago, my sister decided to make me a beautiful quilt which has in big letters H...O...P....E. It has stuck with me as I have gone on this journey. For me, my HOPE comes from knowing my life was wonderfully created by a loving God, and has a purpose. Figuring it out as it constantly changes with amazing blessings and really hard times is part of the natural flux in life, like waves that pull you under into its turbulence and then push you back to the warm safe sand. We shouldn't fear these changing but embrace them, trusting that something new will happen that one day bring us joy again. It does not change that fact that we have lost something/one important to us. We need to grieve and cry, but let us never give up the HOPE in what's next. For some that HOPE has a foundation in a faith in God. It's during these difficult times we find out what we have hope in. I recently challenged a surgeon at work at work who is agnostic/atheist about what does he put his faith in. He could not answer. He was not sure.

Life is hard and does bring great challenges at times. These times challenge our beliefs and push us to figure out what we HOPE for. I know where I find my hope through the turbulence.  Doesn't mean life is easy as I figure out my new normal (again). However, God is my anchor. I can say, "It is well with my soul",  can you?

What is patient centred care?

I’ve taught a lot about chronic conditions to medical students and rehab students over the past 15 years, partially because that is what I research – mainly spinal cord diseases, and partially because I am one who has a spinal cord disease. We talk in our sessions about what does it mean to provide health care to patients with ongoing conditions and the term patient centred care is thrown around. Is the patient the driver of their health care? In most ways, yes. We should encourage patients to take initiative in their health care. They should ask questions, learn more about their conditions through trustworthy sources and include family and friends into their circle of care where they can. Patient centred care shouldn’t just happen in a health care setting but begin in the home with making healthy choices in food, exercise and people. We hope that by doing these things, their lives will be made optimal under the circumstances. We know that the more one feels a sense of control and have autonomy, the better the quality of life there is.

This all sounds so well and good but what happens when a chronic condition becomes more serious or a life-threatening illness creeps in. Where does patient centred care go then? Is the patient always in charge? Interestingly, my old me may have said yes, but now I may say, no. I was diagnosed with cancer that has spread to the lymph nodes and suddenly my world changed quite quickly. Prior to this, I felt I was in charge of my health care. I mainly chose the doctors I wanted to see. I was well connected because of my profession. Although life wasn’t easy, my health care for most part felt like under my control.

After the cancer diagnosis, appointments were made for me. I was constantly being notified about this test or that scan or another doctor to see. Even I, who works and teaches in the system plus decades of personal experience, felt overwhelmed. I was suddenly swept on to a train that just went steamrolling down the track and I couldn’t stop it or get off. I had no idea how to manage it. I just had to go along for the ride. The very first doctor I saw said, “this will take about a year to go through.” It’s like he said, “welcome aboard, you are going for a year long journey and we’ll take you there. Just sit back and let us take care of you.” Unfortunately, I’m only ½ way there. Or I could say, hey, I am ½ way there!

As I have waited in clinics, laid in a scanner or received radiation I have had more time to think and I have been wondering a bit more about this patient centred care concept. What we talk about with students may be suitable for stable-ish chronic conditions but may not work so well for conditions like cancer. This is a scary condition and the treatments still seem barbaric (blasting the body with horrible chemicals or radiation). However, the people that take care of people with cancer do know what they are doing. Yes, it feels completely out of my control but so is the disease. I cannot do it and I cannot be in charge. I must let the folks at the cancer agency take over my care. They do it well and they do it sensitively. The system is so well run with everything orchestrated behind my back. The surgeon and oncologists are on the same database. They have team meetings where my care has been discussed with genuine thought and consideration to my pre-existing issues. Sometimes I get frustrated with the little notices that come in the mail, thinking it is so last century, but it works. Am I really mad at these notices, or am I mad at the cancer that has put me on this train ride for a while? Am I mad losing control over my own care? Probably yes. However I do think I am actually getting patient centred care. I could never have organized the kind of care that I received on my own. I needed the system to just take charge. Is it perfect? No, but I am impressed with how it has gone. The way the different departments and clinicians communicate, overall have been great. The regular health care system could learn a lot from the BC Cancer Agency.

It will be interesting how this experience will inform how I lead my small medical school groups again starting in June. I’m curious too what they will tell me as they shift from doing Family Medicine experiences to their acute ward experiences. How will they figure out when their patient needs to take more autonomy and encourage that and when should docs take more initiative and control over  a patient's situation? As a medical educator I love it that I am encouraged to be a life long learner, just as we tell our students to be life long learners.