Thursday, December 1, 2016

5 years in Retrospect...Celebrate Life

Looking back on five years post accident, and grateful for so many people who have helped me to embrace life more fully.  Ya'll know who you are.  You rock!

Gracias.....and CLIMB ON!

Monday, May 23, 2016

What having "One foot in the grave" has taught me about Advance Care Planning

Occasionally folks will ask me, "Do you ever miss your foot?"  My response is usually something like, "Definitely not my post-accident one....but my pre-accident foot, yesThat one was lost at the time of my accident."  In companioning patients in end-stage / end-of-life situations these days, I am reminded of how difficult and arduous the soul-searching can be... to know what to do when a part of you....your loved one, is not coming back in the way they once were.   No matter how we look at it, loss is hard.  It seems we do all that we can to avoid thinking about it. 

My post-accident ankle brought a lot of pain, heartbreak, and longing for a life I had once loved.  Thankfully, amputation provided a better "quality of life" alternative to walking around in this metaphorical middle-world of wishing for the past yet wanting to move on, (and life is different as an amputee, for sure).  However, there is an energy that gets all clogged up in a person's psyche when feeling stuck, powerless, and in pain.  We forget the emotional toll this can take on a person and their support system.  Without realizing it, the "suffering person" often feels guilty for not being their "former self" and for "bringing people down", despite all efforts for folks to assure them that this is not the case.  

I know a family right now who is going through the arduous process of learning how to let go.  Pam has been battling end-stage cancer for six months, and has undergone four hellish years of exhausting all options to treat her progressing disease, which has now invaded her entire body.  Like me and like many of us, Pam is tough.  She has, as they say, fought the good fight....but she is tired.   The family is tired.  Everyone is tired.  But the energy is stuck in trying to hold on to the physical life she has left rather than celebrating and embracing the amazing spirit she is and offering it back to the universe.  

One thing I have come to know without question is the fact that all of us have a terminal condition.   Short of cryogenics becoming a reality (as in the sci-fi thrillers), none of us is making it out of this world alive.   It might sound morbid and pessimistic, but there is a freedom in acknowledging this reality earlier rather than later. We have no crystal ball to know when it will be our time to exit this dynamic and beautiful giant green and blue earth marble that we inhabit.  Remaining in denial about our eventual demise only serves to stifle the life-energy that we all embody.  It's an energy and a spirit that dances and communes with a place beyond the walls of our skin. 

Two years ago while in Florida (getting my first prosthetic leg) I received a phone call from my mother informing me that my dad had suffered a pulmonary embolism.   My mom found him non-breathing and unresponsive on the floor and immediately gave him rescue breathing (yay, mom!).   Luckily, the clot became dislodged, my dad got to the hospital and was treated promptly.  It was truly a "best case scenario."  However, as luck would have it, the proverbial genetic canon on my dad's side is fully loaded with cardiac problems.  Whether you aspire to the understanding that "life is a crapshoot", the belief  that we are part of something greater, that we are all inherently doomed to the underworld, or that aliens will inhabit our bodies at the moment of death, it does behoove each of us to have a discussion about what we would like our final days to look like while we are in our most sane minds, and earlier rather than later

Way too often, we have all seen families torn apart by unforeseen challenges which present themselves at the end of life.  In these circumstances, people can become literally and figuratively out of their minds, because it can be too tough to handle hard choices when we are still reeling from the trauma of finding out horrible news. 

To begin the start talking about these things is enormously important.  

While medical technology has progressed by leaps and bounds over the past twenty years, so have medical complexities, and thus, our choices. 
We do ourselves a disservice by giving away our power to make choices if we don't discuss these issues while we are still able.

Before my accident, I never would have thought about these kinds of things.  "It's depressing," as some of us say.   But is doesn't have to be

Talk about what you value.  Talk about what are the non-negotiables of your life, and what, if projecting forward, you think you could or couldn't handle.  Also, know that these things could change... because life is constantly evolving.   Be sure to have these things in writing, and have them on-file with your medical professionals.  

Denial can be a horrible thing.   But not engaging our brains and our hearts in this very human experience is what makes it horrible.   Having a plan in place can be an emotional life-saver.

If I would have given all of my power over to the medical folks to keep salvaging my leg, I would probably be depressed and drooling all over myself by now.  Thankfully, there are medical folks out there who embrace the idea of partnering together in medical care for what is best for us and our loved ones.   Embracing the complexity in our lives is a part of the human adventure.  Talking about advance planning and decision making for healthcare is a part of that adventure.  

Just DO IT.  Then get busy living!

Advance Care Planning resources to begin the conversation can be found here: 

US Living Will Registry

Advance Planning, 5 Wishes

"Talking Death" Discussion Cards

Friday, May 6, 2016

REVISIONING STRENGTH. When Life Does Not Go as Planned...

One of the advantages of living through a difficult experience is that it sharpens one's awareness of "bigger life issues", and helps one to hone in on relationships, priorities, and things that we consider of a more important value.  For a while after my accident, I would regularly think to myself, "hey, I've just earned my 'escape the rat-race' free pass", as matters which once seemed a big deal no longer packed the same punch as they had previously.   The other side of that token, I've learned, involves a necessary deep probing into the depths of this life-experience, and discovering that often life does not offer neatly packed reassurances, comfort, or explanations in the midst of our challenges.  The life-stories we write for ourselves seldom include acquiring disability, early death of those we love, pain or suffering of any type....and they certainly avoid admitting any type of defeat.  Whatever the struggle, we rise  This is the stuff heroes are made of.

But what does happen when life doesn't unfold as planned?   When we are hit full-force by overwhelming difficulty or suffering which reminds us that we are not as in control as we once thought we were?   THIS, we tell ourselves, is the stuff reserved for prophets, sages and shamans.  We maintain that we are here to rise.  To embrace victory...

The natural world is thankfully a great humbler, as anyone who has had their vacation plans thwarted can attest.  Yet we hold on to optimism because it keeps us going.  Hope keeps our spirit a-flutter and imbues our life with passion and purpose.  It was this same optimism and hope which drove us to book a trip out West this March with the dual plan to backpack the West Rim of Zion National Park (my first such experience as an amputee), and visit with our good friend Dan, who had been courageously battling an aggressive, terminal brain tumor since the previous May.

Dan and my husband had become friends in the mid 90's, when he worked for the school district of Las Vegas.  Scott found a kindred soul in Dan, as a fellow outdoor / nature junkie who had one of the kindest hearts of anyone I knew.  He was a gifted artist who loved working with troubled kids.  Dan also introduced Scott to the rock climbing community out there, and shared this passion which I grew to embrace as well.  Every few years we would make a trip out for a visit,
and a rag-tag bunch of near-middle age active junkies would meet up at some crag in Red Rock Canyon.   Inevitably, we'd have a awesome energy abounded.

This trip would be different for sure.  We didn't know how different exactly, until Scott received a text from Dan's wife, Judy, the evening before we left for vacation, informing him that Dan had taken a turn for the worst and was now in hospice care.  While waiting to board the plane at Chicago O'Hare, he received a second text from Judy:  "Scott, he's gone..."

We sat in silence, looking at those words and feeling such heavy, heavy loss.  We tried to muster up the ambition to get psyched up for a trip on the West Rim at Zion, but neither of us slept well...and by the time we arrived, the road at the trailhead was closed due to snow.  Reports for an evening on the rim included slogging through snow and mud, below-freezing temps, and a guaranteed-to-be-miserable trek.  Feeling disappointed and down, we opted to camp in the valley and gear down a bit.

Weather for the following day included strong winds and rain, but we made the best of our time there, with a plan to secure a campsite around Red Rock Canyon outside of Vegas.   Driving into the park felt strange, as we realized that the last time we had been there we had taken a fun photo while Dan was healthy and carefree.   Our hearts were heavy, and my husband needed to find some kind of
way to say his final farewell to his good friend.   He got a white helium balloon, climbed atop the Red Rock Canyon entrance sign (the same sign we had posed at the previous year), and let the balloon fly into the sky with his sentiments and shared memories.  

Truthfully, it was a tough trip.  Emotionally, it felt empty and surreal.   We were very grateful to have met up with climbing friends, and to do a little climbing and hiking while in Red Rock Canyon.  The weather finally began to cooperate by the last day of our trip.   Still, the looming shadow of Dan's death was there, and there was no escaping the feeling of loss.

Yet knowing Dan, the ever-embracing adventurer that he was, we pressed on.  We talked about Dan.  We talked about death.  Struggle.  Disability.  Pain.  Loss.  We tossed around gratitude through these experiences, mixed in with a fair amount cursing for the seeming injustice of it all.   We hiked and grumbled, and talked a fair amount about risk.  The risk of climbing, of venturing, of loving, and of letting go.....

And I began to understand strength from a different perspective.

For the years following my accident, I had embraced my inner warrior with a vengeance.  I was going to climb back and take life by the horns.  This was my duty, I felt....having been given a second chance.  

However, life has a way of putting things in perspective, and losing the life you had planned for yourself has an interesting way of tossing you into a humble tailspin.   It's gut wrenching, soul-consuming, heartbreaking and messy.  There is no guidebook for helping to climb your way back and finding your life direction.   As I companion patients and families through these difficulties through my CPE experience at Meriter Hospital, I share these struggles with nearly everyone I meet.     It occurs to me every day that what matters most is not what we achieve, how much money
Climb on, Dan-o!
we make, how physically strong we are, how many letters we have after our names, races we have won, etc.   What matters is the depth of relationships we have with one another, and our willingness to take on this life-adventure....with all of its beauty, messiness and pain..   It also embraces the risk of opening ourselves up to deep, heartbreaking loss.  This is where my heart hurts.   There is nothing more difficult than loss.   There are no helpful platitudes to apply as balm to the soul....our hearts break open and ooze pain, and no emotional bandage can take away that suffering.

Yet.....This IS THE ESSENCE of the life-adventure.   It is risky to love someone so much and to lose them.   The more we open ourselves up to joy, wonder and deep connection, the more we subject ourselves to loss and suffering.  The greater the summit, the greater the risk.   Ask any adventurer though....and they will tell you that the summit and the JOURNEY are ALWAYS worth the risk.

I am thankful for our friend Dan's presence in our lives.  His kind, humble, compassionate heart, youthful vigor, lust for life and amazing friendship will be truly missed.  Our hearts continue to hold Dan's family and his wife, Judy close, as we learn more about this new kind of strength required in the adventure which lies ahead.   The strength of letting go, and climbing on....