Life with several chronic health conditions
For 3 days, I was surrounded by remarkable people whose litany of health issues and coping techniques had all the ingredients of a successful tv series:
Courage, drama, humour, pathos, ethos, mystery, adventure, tragedy, fortitude, lateral thinking, creative thinking, tears, fears, bonding, loss, disappointment, triumph over adversity, love, hugs and hiding out as necessary.
These stalwarts have diseases affecting every system in the body:
Heart, lungs, liver, kidneys, immune, respiratory, digestive, musculoskeletal, amputation, brain.
Many are also caring for a loved one with one or more serious health condition. Health care professionals lurked at every corner, and technology of all sorts is in evidence.
Perhaps, reading this, you’d expect the series to take place in a retirement home, assisted living or nursing home.
Not so. This amazing group was at Stanford University in Palo Alto California. The youngest attendee – Emily in her 20’s, who wrote a poignant blog, Letting people care for you. Not often easy and another lesson learned.
It’s a conference designed around and for patients. A conference that aspires to change the way medicine is practiced and the way systems are designed; a conference that changes – for the better – relationships between patients and providers, and that promotes the concept, practice and benefits of patients helping patients.
These desperately ill people are brought together by a determination to have control, and take control of their health and their lives and whilst on this journey to support each-other. This was evidenced several times. As an example, when one of the ePatients had a flare up, it was fellow ePatients – living with some of the same conditions – who came to her rescue. As she said later ‘It was a such a comfort having someone sit with me who knew what I was going through.’ Not a (well-meaning) healthcare professional in sight.
One of the workshops, on re-imagining the Waiting Room, brought insights about some of the small stuff making a big dif (comfortable chairs, healthcare professionals that acknowledge, respectful tone of voice) Led by designer, Susan Dybbs and patient-designer, Katie McCurdy.
Another tackling the question of: what user generated ‘data’ could be used to change a doctor’s mind lead by Carla Berg , with co-presenters ePatient Natasha Gajewski creator of SympleApp and Leslie Kernisan . That kicked off with a discussion about the interpretation of ‘data’: The answer:’anything that’s recorded’ from a young woman, identified with the BRCA1 breast cancer gene, who opted for a double mastectomy.
I took heart from Dr Leana Wen’s presentation, When Doctor’s Don’t Listen who confessed her anxiety promoting patient stories at a conference where technology factored largely.
Listening, learning, I felt their energy, tenacity and commitment to helping each other whilst helping improve the world. I want to capture this and bring it to end of life issues – the upsetting, fraught, multi-dimensional issues and dilemmas that crowd and confound we and our loved ones as life winds down.
And as this thought was fermenting and formulating in my constantly buzzing brain, I met the like minded Geriatrician, Dr Leslie Kernisan , Alex Drane who specifically developed Engage with Grace and Dave deBronkart – a man who escaped an untimely death by cancer by becoming active and proactive.
Capitalizing on the networked world, and the ePatient movement, we’re dedicated to making life – right up until its end – be as meaningful, and as free of suffering as possible: physical, emotional, spiritual and psychic.
We who were feted and pampered and protected felt rallied and inspired to act on what one of the many superb speakers proposed: that the spirit and intent of MedicineX become a virus, to spread the world-over.
For our beloved elders, for ourselves and our children.