Sometimes I Wish

Sometimes I wish

we could fit in

because the systems tell us this is what one must do to deserve resources & care

an economy of lengths and widths and depths

ignores aberrant lines of flight

but this story veils the homemade research dream puzzling

low hums of thoughts

always whirring over you

daily eyes and ears and

guts pour out

surrounding your speech-acts in wonder

unknowing certainties privilege folds into my skin

I try with what I am

I do with what I have

always imagining

infinite

you

Open Letter to a Pediatric Sub-specialist

Photo Credit @http://www.mediamath.com

Dear Doctor,

I came to your office today to meet you for the first time. I brought along my 12 year old daughter who has a variety of medical conditions. We’ve been accumulating diagnoses since she was born and at a great rate in the last few years.

As her mother, I am a typically healthy person, privileged with a body that’s never been diagnosed with anything chronic or painful. I’ve been “able” to do anything I’ve desired for the past 43 years.

When I came to your office today, we began with me filling out paperwork and paying you money. I am lucky to have insurance. I spent part of my work day and $50 so we could learn from you. I believe the insurance company will pay you additional fees for our time with you and the opportunity to learn both about the condition you are diagnosing my daughter with and the treatment options you are prescribing.

We moved in with your nurse who would weigh and measure my daughter.

We passed you on the way to the scale and the wall mounted height rod. You looked like the doctor. I thought it made sense to greet the person we were here to see with a good morning. You ignored us. The nurse measured my daughter.

We were escorted to an examination room. I received a clipboard and began responding to the review of systems form.

You entered the room. I’m not sure you shook our hands or greeted my daughter. You were holding a report in your hand. You read it over to yourself and spoke about the new condition you think she has. You asked me why we had come to you. I told you that we had not observed any issues, but had been referred by a surgeon who had told us a consult and test with you were part of his new patient protocol.

I told you another doctor had told us she did not think we had the condition you were diagnosing, so this doctor’s referral for the test was a counter to your test and diagnosis.

You shifted in your seat. This seemed to discomfort you.

You rated my daughter’s condition with a numeric scale.

I asked you what the highest rating on the scale was, so I had something to compare the number you were giving me to.

You said the scale had no upper bound.

I asked you how the rating gets configured. What measures are taken and how are they used to determine my daughter’s rating on this scale?

You stared at me. Time passed. You told me some terms and some numbers.

I asked you what the terms meant.

You stared at me. Time passed. You defined the terms.

I asked you what sorts of issues might arise during the study that would confound or complicate the data gathered. If you were the parent using the study to make meaning of a diagnosis, what questions might you have about the conditions of the study?

You barked that data had been captured about my daughter for well more than the minimum amount of time required by the American Academy of Pediatric Doctors in your subspecialty.

This didn’t answer my question directly, but it was the last question I asked.

I felt like I had to explain myself.

I felt like you did not want me to ask questions.

I felt like you wanted me to accept your diagnosis and follow up with your recommended treatment.

I had more questions and I saved them for the internet.

I had more questions and I did not ask them.

Dear, doctor, what is your health status?

Do you have any children? If so, what is their health status?

How many doctors have you visited with young children carrying multiple diagnoses?

Do you know much about my daughter’s rare genetic mutation and resulting condition? What do you know of my experiences working with world renowned doctors?

I know some about my daughter’s condition, but I don’t know everything. In fact many doctors who have tested and diagnosed and treated her do not know everything. Most of them know very little about her condition and most of them know very little about her history. Even doctors who study her condition do not know everything.

But I have lived with her for 12 years. I am well versed in her bodily history. I am also well versed in what it’s like to get inaccurate diagnoses. I am well versed in what it’s like when doctors treat her as though she has only the condition they are familiar with. I have seen her over and under dosed. I have seen her receive conflicting diagnoses. I have seen her accidentally get better equipment that better treats her symptoms because a random operator or therapist mentioned an option the doctor knew nothing of. I have seen her get the wrong medication. I have been sent to different specialists because the specialist was so sure of their diagnosis only to find out a year later they were wrong. I am well versed in what it’s like to live in a hospital for three weeks after a routine surgery sends my daughter into respiratory arrest because she is treated like a child without a genetic disorder. These are only some of my experiences.

What is hers?

I have seen my daughter’s face grow sullen as she is talked about. I have seen her frustrated by a body she was born with that seems to both transfix and distance people as they bounce between inquisitive stares, averted eyes and bright stiffly smiling teeth. Strangers work hard to speed past us while getting enough eye contact with me that I know they “admire” me and sharing enough smiley eye contact with her that she knows they feel sorry for her. But few want to know her or be her friend. Curiosity and exchange are signs of love. Smiles, questions about my daughter’s shoes or school and speed create a comfortable distance for doctors and street strangers, but a dangerous distance for me and my daughter.

I use my questions and story sharing to close this distance – often to the chagrin and frustration of doctors, educators, peers, friends and sometimes family. This is my job as a mother, a parent, an advocate and now a mentor to my daughter as she learns to self advocate in all the appointments and situations she will find herself in as a youth and adult. There will be so many times and places where people will know and feel much less than she does about herself, but will use their power and position to shame, doubt, or negate her inquiries and interests.

So where do we go from here?

This is a city where we might run into one another and doctors know doctors and one might run out of second and third opinions, so it’s important that we build a better medical community right here. We cannot simply move on. I cannot run from this. There are not infinite local options, so these are my suggestions:

First, I want you to see my daughter for the person she is. Greet her. Introduce yourself. Ask something about her.

Second, I want you to see us as people who see lots of doctors all the time. Each year, my daughter has well visits with:

A neurologist
A neuropsychologist
An endocrinologist
A craniofacial surgeon
An orthodontist
A nephrologist
An otolaryngologist
An ophthalmologist
A urologist
A prosthodontist
A dentist
A pediatrician

And now you

This does not include illness, changes, tests or additional consults.

Now, I need you to think about how that feels over time. How does it feel to get another diagnosis when you already have 8? What do you think my daughter is thinking as you talk about her and what I should do in front of her? She is staring at the floor. Is she scared to be here? She is here. Acknowledge her. Speak to her. Don’t let her get comfortable being spoken about, touched and examined without being humanized. That is a dangerous position for any human patient and for you. It denies you the opportunity to practice informed, patient and family centered medicine. It denies you the opportunity to learn about her context and adjust to her needs.

Lastly, I want you to know how much power you have to support young people moving into managing and self advocating for their own medical care. Teach my daughter how to care for herself, how to be treated fairly and thoroughly, how to ask her doctor as many questions as she can, how to talk to a doctor about her experience and her hopes, how to think critically like you do. I know you are a critical thinker and now I need you to make your exam room a place where other critical thinkers are welcome and mentored into self care and advocacy for a strong, healthy future as informed citizens.

People first,

Liz, mother to one of your patients

Light at Night

We breathe

in the night sky

“Lights on the tower are so pretty,”

Fresh from 8 hours in the hospital box waiting

“When are we going home?”

for someone to prod,

“I don’t want to spend the night.”

someone to report,

“My family misses me.”

and someone to report about a prod.

“I want to see my siblings.”

We move to the car in another chance to try – reminded of precarity.

Auto-pilot home I remember nights of greasy chicken with cheap beer, snuck into filthy sterile rooms when you were too small to chew as we ate refuge when nothing else seemed safe.

I take you out to your place.

It’s late.

It’s irresponsible.

We go out to your place.

And when we order, the cashier man asks how we are doing tonight. So I tell him we just got out of hospital jail and headed for our favorite dinner treats instead of home.

He was there today.

Nephew. 3 days in. Tomorrow home.

We feel this now.

The woman behind the counter who always calls you, “my friend,” leans in to ask if you’re going to be ok.

I don’t know how to answer, so I tell her you have epilepsy and today you had a seizure.

You will probably have another.

We try things and we hope that something will help us feel safe in your body. Tonight we live there sometimes alongside you.

She offers her own seizures; moments when, “I feel crazy, but I can feel them coming and I can control them and stop them. I think of something I love…chocolate, movies, anything.”

What do you love?

She will ask you next time when you are not feeling so seen.

So known.

She feels you.

I love that you can be seen by the world – unfolded in your fear to a comfort in the imbalance that surrounds us when we tell a little truth tonight.

Theatre of the Absurd

She expected me to be devastated.

“Ms. Johnson, come over here and look at this.”

“What?”

“Come over here and take a look at my screen; at Sadie’s growth chart.”

I come over in time to see her hitting zoom in 25 times. I can see the almost flat line barreling down the one yard highway between my chair on the wall and her laptop hanging on the washbasin counter.

“Ok. Tell me what you’d like me to observe.”

It was like she was doing a see think wonder with a growth chart I’ve been scrutinizing at the will of doctors since June 5, 2007 (Sadie’s birth).

“The line is flat. We are at the standard deviation of 3 since you can’t be less than zero. There are no numbers less than zero on growth charts.”

“Ok.”

I am nodding my head with full knowledge that there are no zeros, but apparently, there are people who are “abnormal” or who “deviate” from the norms these charts work to maintain.

“Tell me what you want me to infer from this chart and these numbers.”

It’s like she’s afraid to say what’s on her mind and what she’s thinking, but has a plan for how this visit should go, for the observations I should make and the conclusions I should draw. I am playing dumb because my kid has always been outside the norm. I have never thought she would meet preconceived expectations. I work everyday to see her with an open heart and mind because she deserves to NOT always have the norm foisted upon her by the world that will inevitably foist it, even if it does in the name of kindness and care.

“She has been taking growth hormone for a year and patients with pseudohypo don’t usually respond to it.”

I bite my tongue and work to shrink in, but have a hard time not saying it, so it spills out.

“Based on the chart it does look like she’s losing weight, so I would gather that the response she is having is weight related and based on early results in clinical trials run by Dr. Emily Germaine Lee at Kennedy Krieger center in Baltimore, PHP1a patients lose weight on growth hormone. I’d also imagine that her internal organs might be growing. That seems important”

“But we can’t measure that,” she blasts. “We can only measure height and visible bone growth.”

“Ok. Are you telling me you want her to stop taking growth hormone?”

“No. I’m trying to set expectations.”

“Mine? Hers? Yours? About?”

All this time Sadie’s eyes are pingponging between my head and the endocrinologist’s. Tears are welling in my eyes. Sadie comes over to place her hand on my knee.

“My daughter is small. She has always been small. Are you trying to tell me she will always be small? I am ok with that. I was ok with that before we started taking growth hormone.”

It was why I, for a long time didn’t want her to take growth hormone. I didn’t want her to ever think that we needed her to grow to achieve some imagined expectations norms produced for her prior to her conception, in utero, and everyday since her birthday. I didn’t want her to live with the bodily-not-enoughness so many have to bear.

Not the doctor, but similar smile

The doctor stares at me with a weird smirky smile that seems to have an affected care about it or grandmotherly reassurance. The smile is unnerving because it’s packed full of how she thinks I should or would respond and the role she and this doctor’s visit might play in my expectations for my child. What she doesn’t know is how I think and feel about norms and bodies and my role as a parent for NOT setting expectations for my child and teaching her to ignore AND put the middle finger up to those who do. What the doctor doesn’t know is what makes this whole event feel so weird to me. It’s as though we are playing roles in a play that the doctor authored with a script she is holding onto and has read many times; rehearsed with other families, possibly in medical school or during her residency. It feels stilted and played out like an SNL skit; two two dimensional cardboard characters reading tele-prompters while simultaneously going through the motions.

And there is Sadie, looking around, distracting herself, wondering, studying, worrying about me…I’m pissed that she worries about me. I’m pissed that the doctor is putting me in a position where I am supposed to play the parent with expectations she is going to work on in front of my child. If Sadie invites me to a therapy session with her when she is 27 and we have to work through this doctor’s office visit, I won’t be surprised. The position this produces for her makes me sick to my stomach…makes me have to write this.

“If she follows at this standard deviation. If… She may be four foot eight.”

“That seems pretty tall,” I remark. “I’m 5’7. That’s less than a foot shorter. That puts her around my shoulder. That surprises me.”

I’m playing along, but this still feels weird. What are we doing? What is she doing? The doctor leads me out to the hallway, so we can look at the freaky measuring device they bounce on Sadie’s head at every appointment.

We stare at the empty space while the doctor calculates inches to centimeters and lowers the bouncy measuring board to display my daughter’s imagined future full grown height. The empty space below the bouncy board on the measuring device fills with my silence. The doctor’s stare at me is pregnant with expectation. I stand there. I don’t know what to say. I scream for my line. It doesn’t come. The doctor beckons to me with open arms. I think she wants me to hug her. She wants to console me. I do not want to mourn over my daughter’s height differential. I do not want to feel pity or sadness or anger or loss over her not meeting some imagined potential produced by norms that rank and classify. Like a rag doll, I hug her. That seems to be the key that unlocks the moment. We move back into the office. She tells me an inspirational story about a nurse who worked for her who was 4’8″ and could do anything. She had to drive a special car, but… This is a nice story. It is a planned story. The doctor seems done with the script.

Now she is relaying changed dosing information and setting up future blood draws to monitor hormone levels. Now we are back to business as usual. Mother cries. Doctor embraces mother. Doctor tells mother inspirational story. Doctor hands mother lab orders. Mother leaves reassured, listened to, empathized with. Mother completes patient survey and gives high ratings for visit.

I don’t want to be a part of this play. I want to write a different one where Sadie and I are the authors, not the doctor and the growth charts. Sure people will assume she is less capable, younger, etc. But it’s not my job to be that person or to mourn because Sadie isn’t somebody she isn’t. Sadie can, but I cannot. I don’t even want to. I fear people will hurt her feelings, that people will take advantage of her, that she will be dismissed more than the next kid. But many parents raising kids beyond the White middle class heteronormative (the list could go on) regime live with those fears and worse. The only power I have is power to live with her beyond those normative scripts people want us to embody daily, so she grows up knowing she IS all I want her to be.