By Cancer Hope Network Volunteer, Lynne D. Feldman, MA, JD

The Jewish holiday of Passover was celebrated in April by our small family this year. Part of the ritual during the meal, called the seder, is for the youngest child to ask four questions about the holiday, and then have an adult answer them. Since grandson Adam is 2 1/2 years old, the task of the youngest child asking the four questions still rests on my daughter Erica’s shoulders. She still remembers her Hebrew lessons, and she also took Hebrew in college.

Today I read about four other questions which Native American cultures ask of those who come to be healed:

Who are you?

Where did you come from?

Why are you here?

Where are you going?

These are powerful questions. I reacted strongly to each of them. I’ve encountered versions of these questions by other groups, but not usually in the context of physical healing. What makes them remarkable is that they reveal that healing is a body-mind-spirit enterprise. They ask the stricken person to create and verbalize his self-created identity.

Some might read this activity as permitting a person’s ego to speak out. But the ego has all sorts of defenses, ill-conceived self-notions, grandiosity or rationalizations. I agree with the creator of Narrative Medicine that regardless of what the patient says to the healer, or the healer receives from the patient, they are both treading within stories created within a cultural tapestry.

I examined each of the questions and saw how my specific culture would influence my answers. I believe that it is a great way to tease apart essential answers for each patient from those where their culture has “scripted” a worldview for them. It might influence how they approach their healing and treatment.

My hands have been shaking for some time now. I don’t know why. All my family and friends have noted the tremor, and I was embarrassed at dinner last week when I ate soup with my spoon. It slopped all over the tablecloth and my slacks. I did not feel “myself”, I certainly didn’t feel whole. I felt that something was amiss with me. So I attempted to put this shaking into some version of the first question of “who are you?” I am a female whose hands are shaking now but have not shaken before. This is “not me.”

Off I went to the neurologist for answers and corrections so that I might feel like “me” again, without trembling hands. I believe she has the answer to how to make me whole once again. Rid me of this tremor that is “not me” and I will re-emerge whole, healed.

But who else am I? If my attention is called to the tremor, then I am the woman with shaking hands. If my joints hurt instead, then that is who I am, the woman whose knees and shoulder joints hurt. If we took a moment-by-moment snapshot of where our attention rests at any second, then that is who I am.

So who am I? All of these sensations that I have adopted are coming from this sense of my “self”, and yet none of them are who I am, really, at the core of me, since once my attention strays, I become someone else.

When I go to the doctor, I have to decide where to rest my attention. Sometimes where I have concentrated my attention is not what the doctor is trained to see. In 2011 while undergoing chemotherapy, I self-diagnosed a wicked sinus infection and spiked a fever. Off to the ER I went, confident I knew who I was—the lady with the sinus infection, who needed antibiotics.

As the nurse put the blood pressure cuff on my right arm, I loudly yipped in pain. She looked at me quizzically, and then at the cuff. Her attention centered on a red lump below my elbow in my inner arm.

“What’s that?” she asked.
“Oh, I can’t lift anything with my left arm since my mastectomy, so I pulled a muscle in my right arm. It’s been hurting for a while. Now about my sinus…”

She wasn’t particularly interested in the throbbing cavities under my eyes, or the 101 degree fever she noted on my chart. Instead, she told me she was calling in a vascular specialist. She was sure that the red golf-ball sized lump on my arm was a blood clot.

It was, and thus began a year of self-injecting Coumadin into my stomach to make sure the clot dissolved and no more erupted.

So who was I that night? To my sense of who I was, I was an ordinary sinus infection. I knew from my knowledge of my own medical history that I got sinus infections once in a while, and this felt like the same symptoms I usually registered. I had no experience with blood clots, didn’t know they could erupt in the arm, that they are not infrequent if you are on chemotherapy, and had constructed a common-sense narrative for what I saw on my arm.

To the skilled senses of the medical practitioner, I was “the blood clot in Room 2,” a person with ailments she had been trained to examine impersonally in accordance with medical protocols.
Inherently, I was both and neither.

I came from a family of origin, my mom, dad, aunts, uncles and cousins, in the sense of both physical inheritances and of genetic proclivities. My mom’s family taught me their version of what “reality” was all about.

Other people caused your illnesses, I was taught, and you might even be able to blame that person if you could “remember” who looked sick when you went to the movies or stood in line at the grocery store. My mom spent hours trying to remember the face of that person who coughed, so she might condemn them for starting her bronchitis attack. I wonder what she would have thought about my double diagnosis of breast and lung cancer.

I was taught not to be a burden to my mother or her sisters, since their lives were so melodramatic and “tragic.” I was never to ask them to turn up the air conditioner if I were sweating in the house, because they felt comfortable in that temperature and my desires were not worth considering. So I learned not to seek out relief for my pain or discomfort.

Fast forward to May, 2011. I came to Sloan-Kettering’s Pain Management Department to see the doctor. Since my thoracotomy for lung cancer that January, I had been in intolerable pain, even while taking ibuprofin.

The doctor with the sad eyes asked me, “Where have you been since January? There was no need for you to be in intolerable pain! We have wonderful drugs for you that will alleviate your suffering.”

Through tears, I just shook my head ruefully. “I didn’t know I could come to you. I thought you people just got patients off of drugs, not gave them to us.”

Now it was his turn to look crestfallen. “Why do cancer patients not come see me sooner? This happens to us all the time. There is no reason for this to continue.”

He prescribed me heavy opioids which I used for 18 months, and then one day I realized I was pain-free, and threw them all away.

So where did I and those other cancer patients come from, with the misunderstanding that we have no alternative except to suffer?
—–A culture that tells us our own needs are not worthy of being addressed.
—–A culture where all we see on TV are ads for addiction centers, and we figure the doctors are afraid to give us drugs lest we all become addicts.
—–A culture where we get the message that we need to tough it out, stiff upper lip, don’t be a weenie, quit complaining.

I have a friend whose mother died of breast cancer at an early age. My friend refused to get her own physical or a mammogram. It wasn’t until I badgered her and promised that I would go with her that she scheduled an appointment. She was just fine, and now her doctor has a baseline for a normal scan.

Another friend’s mother felt the lump months before, and feared the news if she went to have it examined. She delayed almost a year, and when she was finally seen, it had spread. She died three months later.

Angelina Jolie had a double mastectomy. The number of breast exams soared after her news was made public. Robin Roberts of ABC News comes into people’s homes for years and people followed her breast cancer success story. Then they heard her disclose her subsequent medical situation, and they paid attention. Katie Couric’s husband died for lack of having a screening colonoscopy. As icky as the whole procedure is, she educated the public about the needless deaths from fear of the screening.

Why are you here, at Cancer Hope Network? You read or wrote a book about cancer, spoke at a community meeting about your own diagnosis, ran in a run to raise awareness of a specific illness, or heard about a co-worker currently in treatment.

Whatever tips the public’s awareness to look more closely at their own health or symptoms, it serves all of us. There is one less death to mourn, one less family crushed by a loss, one less company bereft of its key worker, one less loss to the universe of that person’s unique talents and contributions. That’s why I am here, and you are here reading my post.

For those who have personally been touched by cancer or other serious illness, this is a crucial, life-transforming question that comes into consciousness at some time: WHAT DID ALL OF THIS MEAN? To me, my family, the medical community, my faith, on and on and on….

You have ended treatment. Now what? What is your next step? I have acquaintances who couldn’t wait to suppress the entire episode. They told no one but their immediate family. I make no judgment about them. As I’ve noted before, everyone has their singular coping mechanism.

But even if you decide not to tell your story or do not wish to remember what you have been through, you are changed, like it or not. In your own unique way, you have resolved the question of your illness’s meaning.

Where am I going? Out there, to the public, as much as possible, to share, to reach out and try to let my pain and story be of benefit to others.

(This blog first appeared in Lynne’s blog at “Integral Experience with Breast Cancer)