Tag: Dr. Rafael Campo

Respecting Our Bodies

During our July Creative Meetup, we were introduced to the theme “Honoring Your Body” by our facilitator, Jennifer Crystal.  Jennifer provided two poems by different poets as a way to stimulate the creativity of our group of writers-with-chronic-illness.  

Our first stimulus poem was “Primary Care” by Dr. Rafael Campo that graphically addresses the body of the ill person, not only the symmetrical perfection but also the smell and blood.  He also exclaims, “beneath your fragile skin, I see the soul that you shield”.   He acknowledges that “you, body, weep, you think, you scar as if to show us our own history”.  The poem is included in Rafael’s sixth collection of poems, Alternative Medicine, that reveals his deep understanding of the relationships amongst “language, empathy and healing”.

 Our second stimulus poem was by Lucille Clifton, former Poet Laurette for Maryland.  The poem, “Homage to My Hips”, focused on a single body part, the hips.   In the poem Lucille expresses gratitude for her femininity and respect for her “body parts”.   She describes her body with pride and humour.   In a discussion of “What Poetry Is”, Lucille suggested that “poetry is a way of living in the world”.   “ a way of trying to express something that is very difficult to express” and “a way of trying to come to peace with the world”.  In her view, poetry comes from questions, not answers, and a sense of wonder about the world, ourselves and those around us.

Writing Prompts provided during the Creative Meetup

Jennifer provided the following writing prompts on the theme of the Meetup, “Honoring Your Body”:

  1. Write a piece of prose or a poem beginning with, “Oh, body…”
  2. Write a poem or a piece of prose about one part of your body.

I chose to respond to the first prompt and decided to write a poem titled, “A Letter to My Body”.   The poem reflects the emotional ups and downs that I experience as a result of having the chronic condition, Mass Cell Activation Syndrome (MCAS).  The condition means that I have to severely limit what I eat and drink, otherwise I suffer from hives, rash, swelling of the legs and ankles, arthritic pain, indigestion and headaches.

Despite this condition, I am able to do many things, including think and write, read and play sport.  I feel endlessly grateful for what I can do and savour my residual capabilities.  I will be 80 years old in three weeks’ time and I value my overall good health.

A Letter to My Body

Oh Body – you test me at times,
react to the smallest thing,
create pain, itch and scars.
What are you protesting?

Where did this reactivity come from?
Why now in later life?
Pleasures from food and drink
turned to irritation and frustration.

You have served me well,
provided joy, pleasure and contentment.
Your agility and resilience amaze me,
even now, a source of astonishment.

I value that I can still walk and run,
the many times that you have been competent,
your flexibility and keenness to learn and adapt.
enabling me to play five racquet sports and two football codes.

Physical discomfort is partly in my control,
I choose to eat what I enjoy,
there are consequences that I know,
you have been forgiving of my abuse.

I’m grateful for my genetic inheritance,
a gift that keeps on giving.
Despite my ups and downs,
you stand by me – a constant companion.

Every day I see people whose bodies will not let them walk unaided,
whose movement is restricted or uncontrolled.
Some have to rely on others for their mobility,
always dependent on someone else for basic tasks.

I’ve taken my independence for granted,
not tethered to others to move around,
doing many things with ease,
the recipient of competency’s benefits.

You’ve stuck by me through thick and thin,
through the aftermath of a serious car accident,
through melanomas and skin cancers,
through the daily MCAS assaults and arthritic pain.

You’ve kept me mobile and mentally alert,
physically capable beyond my years,
despite my lack of respect for you,
my abuse of your good intentions.

There is grief here,
about the foods I cannot eat,
the drinks I cannot drink,
the meals I cannot share.

You have sweated and swelled to protect me from perceived invaders.
I appreciate your diligence in caring for me,
in helping me to maintain my immunity,
in providing the good health to enable my physical pursuits.

You enable me to enjoy my mobility when travelling interstate,
to achieve my 3,500 steps daily,
to play recreational pickleball weekly at intermediate level,
to do my regular exercise routine that keeps me agile, strong and resilient.

I’m surprised by your sense and sensibility.
Your intelligence is not just in my brain,
but also in my gut and heart.
You rein in my unfettered emotions with deep breathing.

I marvel at your body memory,
your capacity to play racquet shots instinctively,
without any conscious intervention,
reading the play and responding intuitively.

I have savoured your competence,
bringing me endless joy in the “now” and in “replay”.
I feel challenged to show you more respect,
to curtail what I eat and drink that is harmful to me.

Oh body, you are like a tree firmly rooted in the ground,
swaying with the winds of change,
inexorably displaying my life history,
in the texture of your bark and the shedding of your leaves.

You are my grounding,
my earthly residence,
my link to nature and others,
my sole comfort in times of darkness.

Reflection

In writing the poem, “A Letter to My Body”, I was very conscious of what I had discussed in an earlier post when I wrote about poetry “blending opposites and breaking frames”.  I wrote the first five stanzas during our Meetup writing exercise.  As I reflected further and processed my mixed emotions around the Meetup theme, I became more conscious of the need to blend opposite emotions and achieve a breaking of my “victim” frame.  In the poem, I was able to bring together sadness and joy, grief and gratitude, disdain and respect, frustration and elation, disorientation and groundedness.  The poem helped me to change my inner landscape from “victim” to privileged.

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Image by wal_172619 from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group, and the resources to support the blog.

The Need for Mindful Listening by Doctors

After completing my last blog post about Dr. Rafael Campo’s view that poetry expresses the rhythm of the body, I began to reflect further on my recent medical experience.  Rafael contends that doctors can access the “interior story” of a patient by listening to the poetry of the patient.  The patient’s medical story encapsulated in their poem provides the “context” for the evolution of the patient’s illness.

Uncovering strong emotions

On writing about Rafael’s perspective on what makes a “good doctor”, I began to realise that my “interior story” was really one of resentment and frustration with my recent treatment by doctors and specialist consultants.  It has been difficult for me to own this part of my medical story because of my inherent respect for doctors and their calling to help people in need of medical assistance.

In the past, I had focused on the “data” about my medical story .  For example, when I wrote the poem The Sounds of My Medical Story, I was very focused on eliciting the sounds and not on exploring the meaning and feelings behind them. Through a process reflection, I became more aware of the disruptive nature of my chronic illnesses and my frustration about the lack of support from the medical profession.

It was left to me to find a way to tone down the sounds/noise of my body by exploring “periods of silence and solitude” so that my body could emit a “soft pattern of soothing sounds”.  I have found these soothing sounds disturbed on a number of occasions recently when my body reacted to specific foods and elevated my heart rate to twice its normal level (from 50 beats per minute to 110 beats per minute) for a period of hours.

Lack of knowledge and understanding of many doctors

Part of the problem is that there is a lack of knowledge and understanding amongst doctors and specialist consultants in relation to my core dermatitis and digestive illness, Mast Cell Activation Syndrome (MCAS).  In consequence, there is a tendency to deny its existence or to ignore it as a part of my medical story. 

It is interesting that one of the new questions added to the survey for the joint Influenza/COVID vaccination asks, “Do you have MCAS and do you suffer anaphylaxis from it?’.  This new question for the Federally-funded, free vaccinations gives an indication that the existence of MCAS and its potentially serious impacts are recognised by some medical professionals in positions of authority.

In contrast, last year I had asked my gastroenterologist to undertake a biopsy during my routine colonoscopy to diagnose officially whether or not I had MCAS (apparently, a biopsy is the only reliable way to test the presence of MCAS as a blood test alone does not provide the necessary information).  My gastroenterologist refused on the grounds that “MCAS is a controversial area” and not accepted by all medical professionals.  At the same time, he gave me the name of a specialist consultant in another area who recognises MCAS and works with patients on this illness. 

Disinterest and disdain of some doctors

I subsequently obtained a referral to a specialist allergist who refused to read my medical history (that I spent hours preparing) but undertook a number of skin prick tests that showed that I was allergic to soy, wheat and dairy products among other things.  He lost interest in my case when he established that I do not suffer from anaphylaxis.  It was left to me to ascertain what foods, in what quantities, are harmful to my body and mind.

I then turned to my General Practitioner (GP) who has a Doctorate in Immunology and again I received no insight into MCAS and how to manage it. However, my GP referred me to a specialist dermatology clinic at a hospital because they were of the view that I would be “a good candidate for biologic treatment” as my MCAS was not under control and I was restricted to 10 foods (that were not harmful to me).  No explanation of biologics or its potentially harmful effects were given to me (I had to research this treatment myself).   From my own research, I have established that biologics are complex and expensive, can cause an allergic reaction and expose the body to more serious infection.  They are often given by injection and can require regular visits to a hospital (e.g. fortnightly).  

During my initial visit and a follow-up to the dermatology clinic, I saw two different registrars.  The first took my medical history record “for the file” but did not discuss my MCAS or subsequent events such as a tick bite, Mammalian Meat Allergy or Ciguatera fish poisoning.  The registrar was totally data-focused on assessing my suitability for biologics.  I was given a request form for a battery of blood tests (20+) to check whether I had one of the conditions that would eliminate me from further consideration for biologics.

Apparently my blood tests results were “good” which I ascertained to mean that they did not invalidate me as a biologic candidate.  On the follow-up visit to another registrar, I was not given the test results but told, after a physical examination, that I did not qualify for biologic treatment as my dermatitis “did not cover my whole body”.  From the outset, I had explained that I was not interested in biologics but this was ignored. 

Since my visits to the hospital dermatology clinic involved more than three hours (including travel time), I cancelled a further follow-up meeting.  I received no useful help with my dermatitis (no one was interested in my symptoms or triggers) – the registrars were only interested in pursuing their biological model which, in this case, entailed biologics. 

In a recent Q & A session with MCAS 360 practitioners I asked whether they supported using biologics for MCAS, the response was that they did not support this approach because it was very much trial and error as it was very difficult to determine the appropriate level of intervention and because it had potentially damaging side effects.

Reflection

Interestingly, during a live presentation by Dr. Neil Nathan, author of The Sensitive Patient’s Healing Guide, a participant from Chicago described her experience with the medical profession when she attempted to discuss her MCAS triggers and symptoms.  She visited an allergist (who claimed expertise in MCAS) and “ was belittled” and told to go to a dermatologist.  However, the allergist ordered a serious of tests despite saying it “was a waste of time”.  The participant then visited a dermatologist who “put his hand up” and told her “to shut up”.  He prescribed steroids which proved to be “useless”.  The original allergist’s office rang the participant back after the test results and told her she had MCAS and needed to return.  The participant chose not to return and over time progressively researched her own condition and improved her health by herself.  Dr. Nathan himself, during his presentation, commented that “if you can find someone who will listen to what you are saying about how sensitive you are, that’s a godsend”.

Rafael highlights the fact that doctors are taught “detached concern and distancing”.  They are “immersed in the biological model” and think only in terms of diagnosis and the “treatment algorithm”.   Poetry, in contrast, expresses emotion fully and thus “abets empathy”.   The cadence of poetry demands mindful listening, attention and attunement to emotive expression and the human sounds within.  It challenges doctors who are caught up in endless checklists, “overwhelmed with diagnosis codes” and disabled by “distancing”.

The Health Story Collaborative is designed to close the listening and empathy gap.  It creates multiple platforms for health storytelling  and provides an empathetic audience of people-with-chronic-illness, as well as doctors.  A supportive community is a key element in the healing journey of people with chronic illness.  I have participated in HSC’s Creative Meetups for the past two years.  This group of writers-with-chronic-illness meets online once a month and provides an opportunity to write about our “interior story” and to share the outcomes in this supportive community.

I have written a poem to reflect my experience with medical professionals and my feelings about their lack of listening and empathy:

The Inner Story Laid Bare

Frustration and resentment abound,
each professional with deaf ears,
not listening to my subjective medical story,
intent on objective data exploration,
missing the “interior story”.

Failing to understand the context of my chronic illness,
blind to its origins, effects and impact on quality of life,
always grasping for what is scientifically known,
shared patient experience ignored,
in the interests of a deemed correct diagnosis and treatment.

Lack of knowledge and understanding,
desensitized by a biological model,
closed to our “interior story”,
unable to listen mindfully,
unwilling to summon empathy.

A peer support community,
ready to share their health story,
prompts for prose and poetry,
collaborating to close the empathy gap,
willing to be vulnerable for each other.

If medical professionals practised some form of mindfulness they can develop the art of mindful listening to patients.  Rafael Campo has used poetry as his way into mindfulness.  Research demonstrates that mindfulness practices are highly effective for the medical professionals. 

As they grow in mindfulness, medical professionals can enhance their physical wellbeing, reduce the risk of burnout, improve their care of patients and develop emotional regulation.  Training in mindfulness, undertaken by hospitals and medical institutions, is designed “to train doctors to actively listen and engage with patients mindfully” thus increasing empathy amongst doctors and improving the accuracy of diagnosis.

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Image by Alexa from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group, and the resources to support the blog.