Category Archives: internal voice

two stem cell and bone marrow registration drive possibilities: please share

Please share these dates:  6/28 and 7/12 when folks 18-44 can register to register to be stem cell or bone marrow donors if a match is found.  The registry needs you!

Those 45-60 can register on line. Please check out information on bethematch.org regarding what this means!  The registry needs you. A cheek swab and a willingness…

Here is the thing: 97% of whites find a partial match.  65% of African Americans do. Other ethnic groups are lower than Whites and barely higher than those of African descent.  For a full match: 75% whites and only 25-35% of those of African descent.  Others are in between. Diversity in the registry is key. The sites for the drive are because they are diverse, inclusive, and social justice minded.  Please come by.

Feel free to share the fliers

Thanks! Sharon

Matt Dobie Immaculate

Matt Dobie St T

More about skinny crazy small

Only a couple more weeks to donate to Sylvie Mae Baldwin’s skinny crazy small. Go here !  And now more about the playwright and actress, in her words:

From my eleventh birthday until the year I turned nineteen, I woke up every morning terrified – terrified that I was going to die of anorexia nervosa. This wasn’t an entirely illogical fear. I had been diagnosed with the disease the summer before I entered seventh grade. However, thanks to the tireless efforts of my parents, I was quickly weight restored and deemed “healthy” once again.

So, why was I frightened? I’ll tell you why. Anorexia is deadly. Of all mental illnesses, it claims the most deaths each year – roughly half due to suicide and the other half due to heart failure. Anorexia is particularly vicious, because the disorder compels individuals to avoid the only effective treatment. Imagine if contracting cancer drove a person to avoid chemotherapy at all costs – that is how anorexia works, but with food.

As a young girl I feared that the illness would sneak up on me once again. I felt powerless over its sneaky and coercive tactics. And, despite many therapy sessions and doctor visits, my own unwillingness to talk about my problems allowed disordered thoughts to plague me even after I appeared “recovered” from anorexia.

When I entered college, my restrictive eating habits resurfaced and spiraled out of control. The loud, boisterous voice of anorexia pounded in my ears: “Keep cutting calories! Exercise! Stay healthy! You know what happens to people who eat fat – they become ugly, unhappy, and unloved.” I would lay awake on my hard dormitory bed, counting my faint, slow heartbeats. I was confused – entirely fixated on my health and happiness, yet the captive of an illness that made me take terrible care of myself and feel desperately despondent.

It was a Friday night in early October when the realization hit me. My whole body was tingling and shaky. “I am dying. Anorexia is killing me,” I told myself.  “My own worst nightmare has become my reality.” I placed one of my hands on the wall beside my bed, the cool surface steadying my uneven pulse. I resolved not to sleep. I couldn’t. I knew that if I closed my eyes, if I drifted off, I might never wake up again. Instead, I ate – one protein bar after another, from a small stash of emergency provisions I had stored underneath my bed. I consumed the bars tentatively, not voraciously, not with any sense of joy, pleasure, or ease, but because I knew I had to.

When I reflect back on that night in October, the night I became convinced that I must and could recover from my eating disorder once and for all, I am sometimes overwhelmed with a feeling of total idiocy. Why did I ever restrict my eating? Why did anorexia consume my life and my thoughts for so many years when all I had to do was make the decision that I would eat fully and live fully?

The reality is that on that fall night, I reached a critical moment in my young life. I had to choose between life and death, between eating or anorexia. For the first time, my choice seemed simple, concrete, and clear. My eating disorder had spent years convincing me it was helpful, fooling me into the belief that excessive calorie restriction was my key to happiness and success. But I finally saw anorexia for what it was, nothing more than death. Death repackaged to look like a shiny can of diet soda and a single cup of non-fat yogurt.

If we are lucky, life is long. Seconds become minutes, minutes become hours, hours become days, and days become years. However, it is the moments that count, the moments that shape our lives and decide our fate. All it took was a moment – a moment, perfectly situated between life and death – for me to decide that anorexia would no longer rule my life. That moment, when I decided to eat, lasted no more than a heartbeat. It was short, a flash, the blink of an eye. However, that moment gave me life – years of life, for which I am eternally grateful.

Today, I no longer fear that anorexia will kill me. I no longer feel powerless against its tactics or consumed by disordered thoughts. Those days are behind me, thanks to the power of a single moment. A moment of clarity in which I realized I had to eat or I would die, a moment in which I chose life.

skinny crazy small

I have a young friend who is using theater for raising public awareness.

SCSrevisionDecPost

Actress and playwright Sylvie Mae Baldwin announces the world premier of her original one-woman play skinny crazy small.  And I am delighted to promote it.

The play chronicles the 8 year battle of a young girl with anorexia, seeking to give new voice to the discussion of this illness and to advocate for breaking down stereotypes.

She has an Indiegogo campaign for skinny crazy small that is live for just a few more weeks. Funds will allow Baldwin to pay her director and technical director a fair wage, as well as to rent rehearsal and performance venues. The Indiegogo page has a full breakdown of how funds will be allotted. Please contribute to this project at:

https://www.indiegogo.com/projects/skinny-crazy-small
Your donation is tax deductible, thanks to Fractured Atlas, a non-profit arts organization in New York City. And if your employer matches donations, skinny crazy small can accept those as well!

Great resources to learn more about the show include their website and Facebook page: http://sylviemaebaldwin.wix.com/skinnycrazysmall

http://www.facebook.com/skinnycrazysmall

You can also purchase your skinny crazy small tickets today!: http://skinnycrazysmall.brownpapertickets.com

About Sylvie:

Sylvie Mae Baldwin is an actress, modern dancer, and musician. In May 2015 her original one-woman show, skinny crazy small, will premiere in Seattle, Washington. The play tells the story of a quirky and strong-willed girl’s struggle with anorexia and seeks to promote honest discussion about eating disorders (www.facebook.com/skinnycrazysmall). Regionally, Sylvie Mae has appeared on stage with Antaeus Company (CA), Book It Repertory Theatre (WA), Key City Public Theatre (WA), Lexington Children’s Theatre (KY), Seattle Public Theater (WA), Seattle Theatre Group (WA), and South Coast Repertory (CA). Sylvie Mae also was part of a group of young actors at the Northwest School who spent three years working in collaboration with UCSF Benioff Children’s Hospital tp craft short plays from the poems and journal entries of terminally ill children in the hospital’s ICU. These plays were performed at the UCSF medical facilities and the DeYoung Art Museum. Sylvie Mae trained with Anne Bogart and the SITI Company in New York. She is a proud member of the Actors’ Equity Association. http://www.sylviemaebaldwin.com

Available now! Click on the link below. (I cannot seem to import the image to show as an image). I hope you will get it, enjoy it, learn from it, celebrate with all of us authors whose stories are in this work, and share the information with your friends, family, and colleagues.  Order it from http://www.UCMedicalHumanitiesPress.com and get a 30% discount. All proceeds go to the University of California Medical Humanities Press, which allows them to publish more work in this genre.  It will be available at bn.com and amazon.com in about 6-8 weeks.

Heart Murmurs flyer

Teams, gratitude, and goodbyes

We had a lot of fun in our hours together in the Labor and Delivery Suite at Virginia Mason Hospital, Seattle, from 1983 until 1989, when I left to take my practice to the University. “We” would be the nurses, midwives, support staff, and doctors from the hospital and two community health center practice groups. There’s a lot of talk these days about teams, as if it is a new concept. It’s a great concept; it’s not new, and algorithms,mnemonics, and organizational protocols telling us to communicate or how to communicate do not make the concept come alive. Relationships are the bricks and the mortar comes from commitment to our patients and to the relationships within the team.

This spring a new patient appeared on my schedule. I recognized the name and I recognized her: big eyes, easy laugh, and organized notebook with items for us to discuss as catch up­—items she felt I would need to know if I was to become her primary care doc (PCP) and we were again to be a team. It had been 25 years since we had worked together as nurse and doctor in Labor and Delivery (L&D is what we call it), yet it could have been yesterday.

…Only this time we would not be working together with a laboring and birthing woman and her family. It was to hopefully keep her healthy, now in remission after chemotherapy for lymphoma. Her cancer care was in our institution and she and they felt a PCP in our system would add to her team that included her husband, daughter, oncologists and nurses; they hoped my joining the team might make her care coordination easier.

After she had completed chemotherapy, her first scan was negative and she and her husband and daughter were optimistic and ready to celebrate. I felt like an old friend had walked back into my life. I shared her optimism and thought, “how lucky am I? Piece of cake: reconnect with an old friend, work on her health goals now that chemo is over…”

That is what teams do if they work: they breed strong ties and create a choreography that could translate to different settings even though we don’t make those translations often. In this case, we settled in, started to work on some of her non-cancer concerns, caught up on her life and hoped for the best. I found out she had left L&D nursing and was a respected nursing educator in a local program. She and her husband had one daughter and she shared how proud they were of her. She told me how, as their daughter grew, they took frequent outings to various parts of the state and usually could be found in the summer crabbing in Puget Sound from their boat. I remember their wedding and could picture the next installments as she relayed the details. Did I go to the wedding? Or were her descriptions so vivid I feel in my memories like I was there? That is the thing about teams. We all own part of the other’s story with a connection that weaves in and out and in an out.

During these conversations I could easily transport myself back to L&D, day or night, someone in labor, sitting around with whoever was there– nurses, the midwives from the hospital midwifery group, maybe one of the family med docs from the other community health center group, maybe the obstetrician on call. If one of us needed help, there were always hands to help. If a woman came in and her on call person was not there, we would help. If my patient came in and I was not there yet, others would help.

What I remember about Linda, the name of my colleague now patient, is her voice. She could tell one of us exactly what she thought and what she thought we should do about it, always with this cadenced softness that did not hide the direct and clear opinion. She could (and would) manage a complex patient in the midst of chaos with the calm of a neurosurgeon and she could coach a reluctant woman when to breathe and how to push when I needed to take a take a deep breath break myself. And laugh…oh I can hear her laughter. She could laugh at herself and funny things she would share. Laugh a lot and laugh loudly, easily tickled by life and our work, easily finding what was important, never disrespectful, just keenly insightful to the meaning, the amusement and the delight—all of it.

Teams…they do create memories. I don’t remember a mnemonic. I do remember the people who touch me and allow me into their lives. Though I am not sure, as I remember the flurry of the nursery filled with the L&D and pediatric nurses and my absolute excitement and disbelief at the show of support, to say nothing of the import of the moment, I believe Linda was right there when my son was legally handed to me at our hospital and again at the shower the nurses had for my son and me a couple of weeks later. I know she celebrated my becoming a parent, and we all shared her meeting her Larry and her wedding a short while later. And then we lost touch.

This spring of remission was short. Her lymphoma was found again, not even hiding very far from her oncologist’s detection. Her remission had not been real. She had more chemo and prepared for stem cell transplant. During that time our biggest conversations were about how to get ready, would she have to live closer to the hospital during this treatment. And she began to accept these realities and in her usual very organized way, she set about making all the arrangements.

Just a couple of weeks ago, with her port in place for the transplant, she was admitted with a fever. We hoped it was an infection, maybe the line that had been placed. Her doctors tried to hope and did cultures and started antibiotics. Within a couple of days, it was clear. No infection. Her cancer was running wild. Her oncologist gave her the news and we expedited her return home with her daughter and husband and Hospice, her new team member.

Her bucket list got much shorter. She had a couple of good days and her family was at her side pretty much the whole time. Before her discharge she told me she worried about the strain on her husband and daughter and I told her they were strong and would be fine. She said, “but I have things to do.” I asked her where she would tell me to put my energy if I knew I was going to die the next day. She laughed. Oh how I loved her musical laugh. She said, “You give me perspective. And also, I really want my daughter to go on her trip.” I said, “That is not your choice.” She laughed. We both knew she would have said the same to me.

I thought she would live a week or three. And I hoped to visit her and maybe have the courage to say a proper good bye and to thank her for the days and nights we passed together in L&D and for trusting me with her care at this momentous time. She died quietly, 5 days after going home, with her family at her side. When there is a good team, maybe there is no good way and no need to say goodbye.

Fragments

Sometimes those fragments of time that occur in the cracks between the “regular” stuff of scheduled life are so full that there is no time to even contemplate a blog entry. There are simply no moments left.

We hope we can appreciate the meaning of what is happening in those cracks.  And then there is “now, back to our regularly scheduled show.”  This site just fell off the shelf for a bit.

Here is the big news: we have a publisher for our manuscript of narratives by physicians (and me as editor/author) sharing how we have been affected and changed in our relationships with patients. This is work I have been doing for years and compiling/editing for over 4 years. That’s one reason for no blog: trying to bring us and it together to get the manuscript in. That means: I need from each contributor three things: their bio, is their story blinded adequately, and do they want their name attached or to be anonymous?  Simple no? Not! Of the 30+, I still need to track down 5. Then I need a permission slip signed by each. I may need to appear in person on doorsteps all over the country to get it done.

I need to complete the editing and proofreading,  find some sample cover images, get a head shot (of me), a short statement for the back cover, proofread the bios, maybe write an epilogue.

And anyone have friends who are famous who will look at the manuscript and write an endorsement for the back cover? I wrote to Gawande, Verghese, and Remen and they did not respond…next? One of my sons says, “Ask em again.”

My time to edit and herd contributors is cut short by other moments that I can’t just ignore, as excited as I am that this work may actually see print.

Life happens. The book is all about relationships. I simply cannot shelve them while trying to make the book happen.

I am meeting with the patients about whom I have written and if they are deceased, I am sharing the stories with their family members -if I can find them. This is a process that is full of meaning for me, for the few other authors who are also contacting the subjects of their pieces, and hopefully for the people we are contacting.

Before each meeting, I feel anxious about sharing what I wrote. How accurate are my perceptions and descriptions? What will my writing bring up for the person (or family member) about whom I wrote. The narrative is really about what I learned about me in the context of that relationship, however that means telling the patient’s story. Funny, but revealing my lesson does not leave me feeling vulnerable. Instead, I am most concerned how they feel I represented them or their family member, because our connection in reality is just a small bit of who they are or their life story.  So far, and I only have three more people to meet, no one has had big concerns; all have had things to share that either enrich the story or give back to me. I will try to write this piece in an epilogue, but doubt I can do it justice. There is a ripple effect when we are authentic about this reciprocity piece in relationships. Moments…they can build on themselves like waves.

Hearing Loss—Take Two

In my last blog on hearing and hearing loss, I mentioned how a lot of what most of us actually “hear” is with our eyes.  We unconsciously add to our sound hearing with context and even lip reading and intonation.  I would quote proportions and give a reference if I could find it again.  Oh well, I csan’t.  Tonight I went to see The Lego Movie at the advice of my son, Nicholas.  Lego characters do not really move their lips, right?  During the first few minutes, until the story line was established, I thought it might turn out to be a worthless venture with my comprehension being about 70%.  Once we were about 5 minutes into the movie, I could much more clearly “hear” the characters’ lines–because I had characters and story line. It was a very interesting verification of what I had read, tonight experienced first hand.

That brings me to the –drum roll and trumpet blasts–hearing aids. I opted for the ones recommended, that sit in the ear and supposedly do a great job of not magnifying surrounding sounds and would work for work, which for me means 1) hearing soft spoken people in meetings, 2) being in group sessions and hearing various people, and 3) using the tools of my trade: the stethoscope.  Of course I also hoped that the car radio could be at a lower volume and that dining in loud noisy restaurants would be easier.

They get a grade of D+ -maybe- except in one crucial area they get an F and therefore will not work.  I feel like the princess and the pea.

1.     In the car:  Wow, I can hear all the other cars and my car’s quirky noises.  Cool.  But I cannot turn down the radio volume.  If anything I need it louder to hear over all the “new” noises I can hear.

2.     Small groups at work:  not yet tested.

3.     Restaurants:  I used to love eavesdropping on tables near me.  I am happy to report that capacity might be back with the aids!  Hearing my dinner companions however is not improved at all.  Like the car radio, the indiscriminate pick up of the microphones does not make the near and dear clearer.  Do I want to eavesdrop or do I want to be part of the dinner conversation at my table?

4.     And the final:  I can hear NOTHING of the heart with my stethoscope and lung sounds are 90% blunted.  So this aid will not work and will be returned.

I know there are some that apparently filter better and they had downsides that left them not recommended (I cannot remember why).

We would think that the technology that is out there would have this figured out. I am back to the drawing board, trying to do my part to do my share of the conversations in my life. It is not so simple as just go get a hearing aid.