Wednesday, March 25, 2015

Death in the Family: A Conversation Catalyst

Last night we held a good friend in our arms as she died.

Our good friend was a mouse named Basil but the process of dying and our being present was no less significant to my children than had Basil been a human friend.

My husband and I were walking swiftly out the door when my daughter first called out, “MOM! MOM, I NEED you!” Since my daughter is not afraid of spiders or any other creepy crawlies, I expected something along the lines of a teenage feminine problem and was surprised to see the mouse in a fetal position in her hand. Instantly I assumed, as had my daughter, that our littlest pet was dead and, as I gently scooped her up, I was a bit startled to find her still warm.

My son and husband joined us quickly and I explained she was still alive but not for long.

Suddenly the errand of the evening was insignificant compared to bearing witness to a family pet’s final moments.  Actually, what I assumed were final moments stretched into lengthy minutes and we stood gathered in my daughter’s room speaking in low, soothing voices.

This is not the first mouse death in our home. A few months ago, I held Basil’s sister Rue as she took her last few breaths. The difference this time involved my husband and children’s participation and an active conversation around end-of-life decisions and consciousness. We spoke clinically of the processes going on (the twitches and erratic breathing were especially disconcerting to both children) and we spoke from the heart about wanting to be with her in her final moments.

Rue had died very quickly in my hands under similar circumstances and my daughter never touched her. She was unnerved and a little afraid. With that memory still fresh, I was thrilled to note that this time my daughter had actually scooped her out of her habitat and that everyone felt comfortable enough to gently stroke her fur.

“Do you think she wants to die?” she asked. “You know like people who are just done and choose to die days before they actually do? Does a mouse think like that?”

“I don’t know,” I said. “I really don't know.

“Do you think she’s conscious?” she asked.

“I don’t think so but, either way, I don’t want her to die alone,” I answered.

If you’ve been a longtime reader of this blog, you’ll know that among other things, helping to demystify death for my children is important to me. The catalyst to remove some of the associated fear and aversion to conversations around end-of-life has been generated in large part by cancer and the multiple diagnoses and death of many friends and family. Ironically, my own turning point with end-of-life came slightly before the onslaught of cancer diagnoses, through the death of my grandmother, just over three years ago.

As we continued to hold and stroke Basil, our conversation continued around what senses remain in those final moments. I spoke softly to Basil and thanked her for her being such a wonderful snuggly pet. And I asked every few minutes, “Do you want to hold her?” My children responded by gently stroking her fur but neither child offered, asked or indicated a desire to hold her.

My son noted the cyanosis quietly, “She is getting very pale.”

Indeed her normally pink feet and nose had developed a greyish hue. “Yes, the oxygen in her blood is very low.” 

As her respiration became more and more erratic, her body would spasm slightly. My own self-doubt played intermittently yet silently through my head, “Is this the right thing to do?” “Does she want to be held?” “Is she in pain?” “Gah! What should I do?” But my outside mannerisms belied any internal ambivalence and I went with what felt comfortable: being there, holding her, talking out loud about what was happening and supporting my family.

Basil’s respirations ceased being visible but I could feel her heart beat for another several seconds before everything stopped. “She’s gone,” I said. “I’m very glad we could be with her.”

A few more tears were shed and then the search for the appropriate burying box began.

The death of a loved one, be they furry or fleshy, is difficult. But the death of loved ones is an inescapable part of life. Thank you Basil, for the two plus years of enjoyment you brought our family in life and the lessons you taught us all in death.

Sunday, March 22, 2015

Authenticity: Walking the Walk

When I speak with new cancer patients, I always remind them to be authentic with their feelings. If you feel like a warrior, let loose the battle cry; if you feel like the victim, sob fiercely into the belly of your cat; if you feel angry, shout it out; if you feel frightened, reach out to the closest warm body for that hug. Whatever the emotion, just allow yourself to feel what you need to feel, when you need to feel it.

And, when I speak with individuals trying to find their way on social media, I always remind them to be authentic in their communication and their representation of themselves.

Yet I realized through a few key interactions with others, I’ve hidden a portion of the real me for what I assumed was the benefit of protecting others feelings – or my perception of their feelings.
On Twitter, I share my thoughts, opinions and feelings as a cancer survivor amongst my thoughts on cycling, gardening, running, etc. On my blog, I write openly about my fears and my conflicting emotions regarding survivorship and my activities pursuant to improving an imperfect healthcare system.

Even Google+ gets an update every time a new blog is posted.

Yet on Facebook, I passively shield others from the cancer-related facet of my life preferring to upload photos of my children and tandem bike rides with my husband. On Facebook, people are only getting half the story.

A new but very dear friend has unwittingly exposed this dichotomy through her own authenticity. Corrie openly posts about successes and challenges in trying to cure cancer and openly calls out the barriers amidst the day-to-day sharing of her family’s escapades. She actively seeks collaboration to cure rare disease and delights with photos of her children making lemonade. 

Her authenticity has made me reflect on the social media separation I have created in my own life.

Rarely do I share my healthcare-related blogposts via Facebook, yet Twitter is the first place I announce a new post. I am incessantly tweet-singing the praises of local, regional, national and even international cancer support and research organizations yet few of these make it to the Facebook platform. And I spend an incredible amount of time linking people and organizations together yet I have avoided making any of these connections via Facebook, lest it unsettle my friends and family. 

Ironically, the individuals linked to my Facebook account are some of my closest friends and family. They are the same ones who cared for my children, brought meals, sent flowers and transformed my front garden during the darker days of my diagnosis and treatment. They are the same ones who, on the six month anniversary of my diagnosis, joined me and my family in the great “Gratitude Party” celebration. And, ironically, they are the same ones who showered me with support as I chose to make a rather abrupt and non-traditional career change.

And yet I have subtly removed these people from a huge portion of my life by omission. So exclusionary are my conversations, many of them don’t even know what my work entails.

There was no malicious intent. Thinking deeply about the path to social duality, I believe I projected a bit of cancer-fatigue on these friends and family. I was tired of cancer talk so I assumed they were as well. Yet, when I created a new career around advocating for patient inclusion and expanding the general healthcare system’s view of the patient experience, I felt a bit of anxiety around sharing. I assumed cancer talk depressed people who weren’t/aren’t forced to think about the intricacies of diagnosis, treatment, recovery and, in large part, mortality, and I honestly didn’t want to bring people down.

In the past week, I realized this omission is actually a disservice to those that I care about and perpetuates the siloing of information I detest so strongly. Information and access silos are the bane of researchers, physicians, caregivers and patients everywhere. Information silos are barriers to the collaborative research that will lead to more effective treatments. Access silos are barriers to critical support and treatment information. Friends and family are not immune to their own healthcare battles and the current collaborations could be useful to them on a very personal basis. Moreover, the people who I am friends with are rife with their own redeeming qualities, many of those qualities helpful in building collaborations. By default, I have been exclusionary and I have underestimated an entire group of amazingness.

I have spent almost two months fostering a #IWishMyDoc/#IWishMyPatient hashtag campaign in partnership with the Flip the Clinic organization. The campaign that strives to bridge “the gap between patient and physician, with health, wellness, and shared understanding at the center.” Yet I’ve kept these efforts mostly sequestered to Twitter. Yesterday, Dr. Iris Thiele Isip Tan published a very personal blogpost on the #IWishMyPatient campaign. At the end of her post, she writes, “I must confess that this was not a comfortable post to write. But thanks for the opportunity Stacey!” I sat dumbfounded at that statement, overwhelmed with gratitude for her efforts to move outside her comfort zone to push the veritable ball forward. And I thought, “I must do the same.”

So while I can apologize in advance for adding a bit more to the data stream, a more appropriate apology would be directed toward those I have passively excluded for fear my healthcare-related posts would be annoying or overwhelming. I will continue to talk the talk and I will continue to walk the walk. And I will work on extending the whole of my authenticity across the whole of the communications space.  

As I tend to say prior to my involvement in any active tweetchat, “Please, please, please join the conversation, read along and learn or simply ignore [the extra information].”