Through the veil…..

When you think about a sick child…what kind of images flow through your mind??  Probably unhappy ones.  Children should not suffer. Its one of the rules of the universe….all religions seem to agree on it….all moral codes…the innocent should not suffer.

But kids get sick and they do suffer.

its reality. call it the fall. call it evil. call it the facts of life.

kids suffer.

So what do we do with that information?  Well we try to alleviate their suffering…..what does alleviate mean?

11 yo with cystic fibrosis (bad, bad thick mucous slowly clogs your lungs and your pancreas making breathing, digestion and eventually sugar balance difficult).

CF is a bad disease and we require a lot from our patients to maintain their health.  Our patients are frequently in the hospital with lung infections.

What kind of allowances do we make for children who suffer?  Is it ok if they don’t always have to obey the rules?  What about doing their therapies?  Taking care of them selves?   Do we  not cause further suffering by just letting them get away with stuff?
On the CF floor, we never make the kids do their Pulmonary function tests if they don’t want, we never make them control their blood sugar even if the have normal BMIs because they are CF kids so obviously they All are failure to thrive (MYTH!)!

Frankly it drives me to distraction.  Do you know what the increased mortality is from poorly controlled diabetes with CF…A DECADE. A DECADE of a life for a person with CF??? (thats with the average life span, 25% of their lives)

I realize sometimes we have to choose our battles but we also have to make sure  to help our patients fight theirs.  CF sucks. Being sick sucks.  Not being able to have a normal childhood sucks. Dying in childhood sucks more.

I don’t think we alleviate suffering by pitying the patient or pampering them. I don’t think we teach them self-advocacy and I don’t think we teach them to fight.  That doesn’t mean we should cram medicine down their throats or be cruel or legalistic about or force them to do anything. It just means we are honest with them  and that we encourage them not to think about how their life sucks because they are different but by giving the same expectations and grace we would give any child.  A sense of boundaries, a sense of security and encouragement.

Yes Children suffer.

But children suffer more when we don’t love then and treat them with the expectation that they matter enough to us that we will fight for them.

:::off soapbox::::

for the love…

I love my job. I love my job. I love my job.

I had great intentions of writing an epic entry about how much I love my new surroundings and how challenged and encouraged I feel at my new program.

Then today happened.  And well.

I love my job. I love my job.

but some days it sucks.

5 mon old with a trach due to a cyst in his airway that she was born with.  She is beautiful, she smiles and tracks and loves people.

She lives in a neighborhood that happens to be rape capitol and most violent places in America. Its also one of the poorest.

For three weeks since I got here we have worked to get him, his pregnant, single, Mom who is younger than me HOME.

I have talked to her pediatrician, home health, social work, discharge planning, ENT, GI, God and Mom. I spent my first two weeks of internship loving and advocating for this little girl.  Because this is what I believe in. I believe that early intervention can work in the slums, I believe these kids are worth fighting for.

Today was D-DAY.

Home health called after rounds after I told Mom that today was the day.  They  did a reevaluation….they won’t send anyone to THAT neighborhood anymore plus Mom is a social concern, did we know she was pregnant??? And single??? And uneducated???

Yes we knew and yes we are skeptical too. Thats why we spent four weeks teaching Mom to do trach care and tube feeds. She learned it all beautifully and yes she is poor but she is not stupid.

And the fact is, this is America. We don’t take kids away from their parents just because they are medically complicated.  I’ve been in a society like that and believe me while this situation isn’t ideal that one is a diaster and a moral travesty.  The thought of this beautiful baby who is cognitively a 110% been warehoused makes me sick.

Mom deserves a chance.  The baby deserves the chance at his blood family before being turned over to foster care.

After my attending and I begged home health, listened to the SW and the nurses bash Mom, home health, the universe and our team.  And getting no where for hours and hours.

I had to go tell Mom.   She told me that she knew we didn’t trust her especially the nurses….and she thought I was lying because every day I come in and say he is going home and yet he never does.

An hour later I got another page and we went through it again.

And then I came home and crumpled

I love my job. I love my job.

because I love these children. I don’t care where they live, or what country they hail from or how much we think their situation is terrible.  Its not about that.

Its about the child.

A precious child who while I am telling her Mother and she is yelling at the me, at the situation (I would yell too).  She is just smiling at me as if to say I forgive you.  I forgive them.  I love you because you care even if you fail.

and i crumple in the light of her grace, of her wisdom.

I only wish that we could all just for a moment stop moving, stop screaming, stop writing paper work and filing medicaid and remember that in the end this is about that.

Its about the child…

Cultural Obligations

12 people are waiting for a bus.

One is in a wheelchair. A green wheelchair.

The wheelchair does not fit on the bus.   The girl in the wheelchair gets up and starts to fold up the chair. With her backpack on her back with the body under one arm and the wheels under the other she is tittering as the bus arrives.  The other 11 people stare at her.

In their eyes they they tell their stories….uncomfortable, guilty, annoyed, not making eye contact.

11 people rush by to get on the bus.

The girl is left lugging her chair slowly up the bus stairs.  Finally one person offers a hand.

The bus driver. (a middle aged, obese African American woman)

Then one of the people on the bus rushes forward almost too late to help at all.

The bus leaves. When it arrives at its destination. The bus driver picks up the chair and the wheels and places them on the sidewalk for the girl with a smile.

The 11 people look on, some gawking, some looking guilty, some walking quickly toward the building because if they are oblivious it didn’t happen on their watch.

The girl reassembles the chair and thanks the bus driver.

Then she follows the other 11.

The 12 bus riders.

There are the same age…..

……they are the same soci-economic status….

……..most are white or Asian

They have all have advanced degrees.

In fact they are all doctors.

Medical Doctors.

Pediatricians no less.

Is it because I live in the North now? Is it because I am professional now?  Or is because doctors are uncomfortable with the idea of disabled doctors?

or is it none of the above.

All I know is this never happened to me in NC. It happens to me every day here.  I get doors slammed in front of me, I have people take the stairs in front of me in a group even while I am saying the elevator is this way, people rarely talk socially to me if I am the chair so I push the chair so I can have conversations…..

Oddly the program here is much more supportive then the school in NC (see previous entry). Yet my colleagues there were much more accepting than my colleagues here.

What gets me is not the social persecution (because when I am with my new friends they are not like this…not everyone is like this just most of them) or even that my life is physically harder (I am ok with doing things myself…I get through it) its that these people are about to be released on my tribe.    Its fact that most of them walk on by completely ignoring me as if I don’t exist to them in the wheelchair.   What does that mean for their patients many of whom will be chronically ill, or disfigured or using assisted devices?

SO  do they only talk to disabled people or choose to be compassionate when they get paid for it?

No I don’t think its that.  I think its just that I mess up their concept of the doctor-patient sacred boundary.  And I mess with their comfort zones.  Gimps are supposed to be needy and sell pencils on street corners.

But then there is the bus driver….why did she help when my peers, the doctors didn’t?

I don’t know her.  But I could make some guesses.  Although guesses are dangerous.  She doesn’t have our education or our privileges but perhaps she is better for it. Perhaps she knows something that most of my peers and most physicians will never understand even though they are up to their eyeballs in it.

Maybe she knows what its like to suffer or be different or know pain.  Not even necessarily in the physical ways I have known them.

Most doctors (by NO MEANS ALL) who grow up in the states and train in the states know very little of these things.

And in the end I think this is the problem. This is the cultural barrier. Its not my collagen genes or my flat face or my southern drawl.

Its what they don’t know that I do that is so terrifying.   Because believe me if there is anything that we doctors hate its to be one who doesn’t know whats going on.

biazarre blizzard

I once had some one tell me I was a wounded healer. Someone who can heal because they have suffered. All through every interview, nearly every conversation about my double life as a patient-doctor someone always mentions that I must be some emphatic to my patients. I truly understand them.   I have always felt slightly unnerved by this. Despite the fact that I love talking and playing with disabled children (or really any child) and counseling their families.  I can say we have an understanding but I do not think I cannot say I can relate to how they experience their medical situation. Its personal, it really is.  Plus having Kniest is not like having childhood cancer or a heart defect or type one diabetes. Its unique.

But if I ever I was going to get it. If ever I was going to truly understand the insanity of all this, it would be now.  Today.  When I was 9 yrs old I could barely walk and I couldn’t stand up straight. My hips were contracted, my knees were knock knee-ed to the point that my back was swayback.  I had a massive surgery. I have written about it before. Three surgeries in one. I was in the PICU for four days, two units of blood, two weeks in the hospital and oddly a huge blizzard of 2-3 ft of snow. There are nights from that period that I can still recall in vivid detail down to the last blood draw. If  ever I was going to say I had a scarring medical experience it would have been that.

Today I met a friend who I have known for a long time virtually but never met. She is 8 and we could pass for sisters. Our childhood pictures at the same age look remarkably similar. Instead of going to the OR or really playing medical student I spent the day with her and Mom for her pre-op work up.  The pre-op work up was supposed to be my educational endeavor for the day but honestly I could have repeated the sequence with my eyes closed.  I mean I literally did this 6 times here alone.   We had a great time though playing, racing up the hallways, talking and getting to know and her Mom.  I knew watching her walk what was coming but I doubted my inexperienced instincts.

My instincts were right on,  we looked at her film, we examined her and the plan was set. Bilateral femoral osteomonies. My heart melted a bit for my young friend.  They talk about the post-op pain and epidurals and physical therapy and I just sat there and remembered it all as they glossed over it like it was somehow an every day event for one to have broken legs in three places and then try to move it less than 24 hours after the blessed trauma. I was so struck by how little they really knew..At one point the oddest thing was said, my young friend looked at my attending/our doctor/world famous physician who is the Chairmen here and said “But Amy has way more skills, right?”  I of course said NOOOOOooooooooo quite seirously. But I look back and think what did she mean by skills?   I  thought to myself how often do you have an almost physician in the room who can say I HAD THIS DONE.  Does that count for something?  If  I could go back to the night before my own procedure what would I have had told the younger me?

I have no idea and I had no idea as we sat there together side by side eating pizza, playing cards and chasing paper airplanes. After all this talk of empathy, wounded healing shenanigans I fail to see what my added superpower is.

I asked my young friend if she had any questions for me as her friend, as her fellow Kniestian, she told me ‘NO.’

and I thought to myself  she knows. I think we all know somehow. We all know that all we can do is just muddle through it. You can prepare for it but not really.

It is snowing with gusty winds just like it was 16 years ago.  I can’t get back to my house in Newark safely. SO I am stuck here among other hospital employees camping out here. I never thought I would spend another night here but here I am in scrubs on a cot in a classroom.

maybe that is the key. here I am.

maybe the added superpower is that I exist. maybe the healing is that fact I can stand up straight and tall in scrubs tomorrow and be at peace with my life, with an awareness and respect for my past wounds, with joy in the present of having the privilege to study under a truly great doctor and play a very small part in helping a dear friend and with great hope for the future of being able to live my dreams unhindered by my  physical wounds.

how many are blessed enough to have that sort of triple blessing?

Maybe that is what I would whisper to my tearstained, pain-stricken 9 yr old self shivering in the PICU if I could….be still.

rest in the knowledge that this is only a blip in the master plan of your story.

if my young friend turns to me in my mask and blue scrubs tomorrow with fear or pain that is what I will whisper to her.

the neverending story….

The first few months of 1994 had an epicenter: March 31, 1994.  I was 9 and on Jan 14  of that year I had undergone bilateral femur, tibia osteomonies (translation: they cut and broke my legs in three places at the hip, knee and ankle and nailed it back together….translation: legal form of human torture in the name of pain relief…).

It snowed a blizzard the night of the 14th the snow drifts were higher than my sister’s head (she was 3). It was so cold that my parents, sisters and a giant Amish family kept been awoken in the night at the Ronaold McDonald House by frequent fire alarms. They would shuffle out in their PJs, coats and hats and wait for the Delaware fire department to arrive and try not to gawk at Amish nightgowns and winter coats.

Meanwhile I was awoken as well…. in the PICU with hives in a body cast. They thought it was my epidural so they took that out in the middle of the night while the blizzard winds whirled outside.  The Anesthesia resident got woken up four times before they did it…poor guy.   My Grandfather (ever the Top Gun) flew in late that evening somehow to Dover AFB and surprised us all.  I have been told it didn’t happen like this but I remember him walking into the ICU room in his US Navy black and gold winter coat (they swear he was in civilian clothes but my morphine drugged mind remembers this)  .    My grandfather and Dad took the night watches so my grandmother and Mom could sleep and take care of the little girls.  (which turned out to be a snow drill with the Amish times three).

My Dad sang Kum-by-ya to me in the wee hours of the morning once the epidural morphine began to fade and six new fractures and numerous nails started to throb…

and that was just the first night of a 14 day hospital stay. and the first night that I counted the days till March 31.

That the day the body cast came off. I counted the days the whole 10 weeks. We drove up there, they took me to the cast room and sawed me out in about an hour.   My legs were scaly, hairy and now dotted with fresh scars. I had not sat up in ten weeks. To transport me to x-ray they needed to transfer to the wheelchair from the high cast table. They picked me up gently but gravity failed me…I screamed as I came to an almost sitting position in mid-air. My body seared with pain at a position it knew no more.

Turned out the bones still had not healed.  i was not ready for freedom. they hollowed out my cast and made it into a splint which I went home in.  I was devastated.  March 31 turned out to be a terrible disappointment.

Nov 23, 2009.  10 weeks after  total hip replacement (translation: they cut out the top of my thigh bone and jammed a large piece of plastic into the rest of my thigh bone and into my hip socket…translation: more human torture in the name of pain relief).  10 weeks ago I discovered Nov 23 was the end of  the dreaded  hip precautions.  disappointing yet again. I can’t touch my toes…heck I can barely touch my knees. My hips are tight and resistant to the idea that they should now go back to doing what they did 10 weeks ago and more.  My therapist doubled my stretching in honor of the occasion. I came home soaked in a tub for an hour and still feel like my hip flexors are made of cement.

you would think i would learn to expect less…to expect no miracles but rather that all freedom especially orthopedic freedom is not free.  (if only the surgeons understood this).

yet again disappointing. really these surgeons  for all their confidence are more trouble than they are worth at times.