Bearing Witness

November 3, 2015

A powerful post was recently published entitled Everything Doesn’t Happen for a Reason by Tim Lawrence.  Before you continue to read the following, please read his impactful words.

This post has resonated with many – especially the epatient community that faces incredible struggles each day.  It is something I often tell my friends who try to reassure me that everything happens to a reason, but few understand until they really experience true pain and hardship.

Lawrence quotes his friend, Megan Devine:

Some things in life cannot be fixed. They can only be carried. 

I haven’t written for a while.  There was too much to say and nothing to say at the same time.  I’ve been broken in the last year and a half in ways I didn’t think I could be broken.  I’ve lost myself and am not sure that I will find myself.  In my life, I’ve been through a lot, but particularly in these last 9 months I have encountered some of the worst moments of my life.  I have lost nearly everything.  Much of what has been lost cannot be fixed, it can only be carried.

In the midst of loss and desolation, I am struggling right now as to my purpose in life.  Why am I getting out of bed, taking a shower, going to therapy, eating food, breathing, taking insulin?  I don’t really have a purpose.  I’ve lost what I care about the most.  I have no direction for the future.

I have nothing to set my mind to, no goals to accomplish, no reason to try to make things better when things do not get better – different at times, but not better and often they get worse.  I will always be sick in far too many ways.  Again, these things cannot be fixed, only carried.

Last night I was reading a book on structural dissociation and as I come to the end an important point stood out – the idea of bearing witness. The idea that everything does not happen for a reason but we can bear witness to each other’s suffering which is consequential and profound in itself.

I immediately wrote an email to my closest friends expressing the importance of bearing witness and how I need someone to bear witness to what I am going through and what I have been through.  I need someone to bear witness because I need another to use what they learn from me, from my suffering to help others.  There’s no stopping things from getting worse, for me at least.  However, I can share my story and perhaps in the meaninglessness of suffering, attempt save others in a way I cannot be saved.

There was a really sappy chick-flick that came out in 2004 with Richard Gere and Susan Serandon (and Jennifer Lopez) called Shall We Dance.  And toward the end of the movie, Serandon’s character as the wife to Gere’s character explains why marriage is important:

We need a witness to our lives. There’s a billion people on the planet… I mean, what does any one life really mean? But in a marriage, you’re promising to care about everything. The good things, the bad things, the terrible things, the mundane things… all of it, all of the time, every day. You’re saying ‘Your life will not go unnoticed because I will notice it. Your life will not go un-witnessed because I will be your witness’.

Bearing witness to life is important in itself whether in marriage, in friendship, or from those who care for us.  Everyone has a fundamental need to be seen, heard, and respected.  When one bears witness, they are recognizing this need.

Bearing witness to suffering though takes greater strength and courage.  Bearing witness to suffering holds greater significance.

In a HuffPost article – Compassion: Universally Misunderstood, this notion of bearing witness is wonderfully described as a form of compassion:

A standard dictionary definition of compassion would read something like, “a sensitivity to suffering in self and others with a commitment to try to alleviate it”. This encapsulates two basic processes. The first is the courage to turn towards, engage and be in touch with pain and distress, rather than opting to avoid or ignore it. The second is the preparedness to acquire the wisdom we need to behave appropriately in the face of suffering.

In the article I mentioned above – Everything Doesn’t happen for a Reason – the idea of bearing witness is captured in the idea of acknowledging and sitting with another in their suffering.
I am here—I have lived—because they chose to love me. They loved me in their silence, in their willingness to suffer with me, alongside me, and through me. They loved me in their desire to be as uncomfortable, as destroyed, as I was, if only for a week, an hour, even just a few minutes.

I’ve talked with my therapist about therapy being, to an extent, hospice care – trying to make things less worse, hurt just a bit less.  But if the last week has proven anything, there is no making things less worse or hurt any less.  So therapy is not just hospice care.

It’s not about making things comfortable or stopping things from getting worse, though I wish that could be and maybe I will find parts of that in what I do in therapy.  I think it is more simply having someone bear witness to my suffering – to say I existed and when I don’t exist anymore that something I said or did helped another.  It’s having someone to suffer with me, alongside me, turning toward the pain and distress so that it is realized as something that actually was endured.  Accepting that it is, was, and will be and that it will not go unnoticed.

Bearing witness.  When I’m at the homeless coalition I bear witness to the lives of many more disenfranchised than I.  When I’m in the hospital on a psychiatric hold, I bear witness to the lives of those left without a voice.  When I go to therapy or a doctors appointment, write an email or send a text or tweet, I’m allowing others to bear witness to my struggles in the hopes they might use it to have compassion for another and offer them the acknowledgment in their moments of despair.

Right now, I ask that you bear witness to my litany of medical and mental health illnesses:

  • Type 1 Diabetes
  • Celiac Disease
  • Hypothyroidism
  • Juvenile Idiopathic Arthritis/Inflammatory Arthritis
  • Herniated discs in my cervical spine
  • Occipital neuralgia
  • Cervicogenic headaches
  • Endometriosis
  • Asthma
  • Chronic Pain
  • Hiatal Hernia with GERD
  • Insomnia
  • Anxiety
  • Depression
  • PTSD
  • Bulimia
  • Diabulimia
  • Borderline Personality Disorder

I ask you to bear witness to the complications that all these diseases and the restrictions they impose on my life.

I ask you to bear witness to the abuse and trauma I’ve suffered, the poverty I am experiencing, the suicides I’ve attempted.

I ask you to bear witness to the loss of what I once thought I would be and what I hoped to accomplish – dreams that cannot be.

I don’t need pity.  Rather, I need compassion, to not go unseen, unheard in the midst of despair and chaos.  I need someone to bear witness.  In that way, all is not lost.

Thank you for bearing witness as you can.

Martin Luther King and Health Care

January 17, 2015

As I remember his fight for human rights this weekend, I came across this quote from Dr. Martin Luther King, Jr. I could not have said it better myself:

“Of all the forms of inequality, injustice in health care is the most shocking and inhuman” – Martin Luther King, Jr. 

Health is a human right.

When You Break a Jar of Hope

January 13, 2015

When you break a jar of hope it may seem like a rather small thing.  It may seem like no big deal, just a jar with words inside.  But when you break a jar of hope, you break a piece of my heart.

I started making “Jars of Hope” in 2011 when I worked for a nonprofit.  We would give them to cancer patients receiving treatment to help inspire them through their very difficult journeys.  And I thought that it was the perfect idea to expand to patients and caregivers wherever they may be – for we all need inspiration, especially on the hard days.


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Teaching Doctors

January 12, 2015

I am incredibly excited to be invited as an ePatient Scholar to speak at Stanford’s Medicine X in September 2015.  I have had the honour of being a scholar in 2012 on the design track with IDEO and remotely in 2014 to talk about the under-served.  This time though, I get to be a part of something new and hopefully incredibly powerful – teaching doctors as part of Medicine X Ed.

Every time I enter a doctor’s office or meet a doctor at an ER, I see it as an opportunity to teach doctors.  Long gone are the days where I allow them to treat me with paternalistic gloves.  I expect to be a colleague in my care and that requires that I teach them as much as they teach me.

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Dear Store – Please Take Gluten Free Seriously

January 5, 2015

Stores are failing at providing gluten free items all over the country.  It’s so frustrating for those of us with celiac disease – for whom gluten free is NOT a fad.  I don’t know why it’s so hard for them to get it right – but I think it’s because they’ve never actually asked someone with celiac disease what they want/need.  (In other words, designing for patients without patients aka end users.)

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Customer Service

December 21, 2014

My second real job was working as a cashier at Nordstrom in the Women’s Shoe department (my first job as a sales associate at a small children’s bookstore – Sunnybooks for Kids).  At orientation, Nordstrom taught us a few things that have stuck with me throughout my life since – people are generally telling the truth, customer service is paramount, and treat everyone with dignity.  Lessons that should be applied to healthcare (and life).

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Systems Failures – wasting our time and wasting our lives

November 16, 2014

Please, stop wasting my time. Stop wasting my life.

– Jess Jacobs

So much of healthcare’s inefficiency is captured in a recent post by Jess Jacobs, a rare disease patient who, after a year of healthcare encounters (including continuing treatment for postural orthostatic tachycardia syndrome, a kidney infection, shingles, pneumonia, a pulmonary embolism, and four blood transfusions this year), took apart the value for time spent seeking care.  And her findings were eye-opening. Read the rest of this entry »


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