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.

the uglies

everyone seems to like listening to my life stories. the little gimpy kid with the disease no one has ever heard of growing up and becoming a doctor has a nice ring to it.  the stuff on my resume makes me look smart, sane, mature.

but in reality most of it is a facade. none of it is untrue but putting it all in bullet points on a sheet of paper cuts out all the details.  no body likes the details.

the details are ugly. everyone wants to know how my surgery went. but everyone wants me to say it went great. everyone wants to know what being a disable medical student is like but everyone wants me to say its been swell.

I just had a surgery that was basically palliative care. it didn’t cure my disease it kept me from pulling my hair out because I can’t sit still because of the the pain. but the truth is yeah the actual four hours of the surgery went well but physical therapy is a bit of a disaster.  i have what appears to be a three to five year old flexion contracture that is not only tough as nails but if it doesn’t get better is going to wear the prosthesis down much faster than usual (which basically knocks off years of walking).  No one diagnosed this crucial fact…one has to wonder what role it played in the hip pain the first place. no one wants to hear from the little medical student that her transition from pediatric to adult medicine has been fraught with peril, that the adult orthopods are not only ignorant about her pediatric disease but too arrogant to admit it.  I suffer for it not them.

I am getting up at 5 AM, rounding on patients I do not know half the time, writing notes either observing (as in not touching) in the OR or occasionally interacting in clinic till 5PM when I go to PT and get pushed on till I finally get to go home by 6:30 and then repeat. today i repeated plus SWINE FLU.

then I try to prepare for things like my interview on Friday, fall asleep on my computer and then wake up in the middle of the night and worry about the flexion contracture that gives me muscle spasm cramps randomly and frequently that leave me begging for tramdol and has not moved a single degree in the last three weeks.

no one wants to hear that some times I come home and I cry with frustration and pain. no one wants to hear about how some days I absolutely hate my chosen profession not just because it has so few answers for me but because  no one have the balls to admit they have no answers.  Good gosh people just tell it like it is. do you think I somehow don’t know that it sucks?

no see that doesn’t sound all that inspirational now does it…

Circles…

I spent a good portion of this week figuratively and literally lying prostate on a table having my someone pull my body into various positions until with my teeth gritted and  tears stinging my eyes I said “I surrender”   My orthopod last week said my x-rays were perfect, my PT progress was not.  He lifted the precautions for PT which means we can attack the flexion contracture with full force.

And so we did and because scheduling PT is like scheduling meetings with Obama I had three days in a row. While it was exciting and somewhat luxurious to lay on my belly…  by the third night I was downing tramadol at 1 in the morning because the muscle spasms were bad enough to wake me from sleep. I have been down this road before…my connective tissue just gives up and hopes  I won’t notice.  Then I spend months fighting it back into submission.  Only to have it eventually give up again and we go back through this whole cycle of me laying prostate on a table for several months….

Then there was the scheduling mishap that landed me on a surgery rotation.  And here I was waking up at 5 AM from my muscle spasms disrupted sleep cursing myself for letting Student Services sign me up for Peds ENT.  Three hours later I was either in the OR a place that makes me feel cold, nauseous and bored or in ENT clinic having my attending yell at me in front of patients to hold my otoscope like I held my pencil…I explained I was HOLDING IT LIKE I HOLD MY PENCIL…it never occurs to him maybe I don’t hold my pencil like everyone else….and I have daily flashbacks to writing my name in Kindergarten over and over again. My teacher standing over me saying THAT IS NOT HOW YOU HOLD YOUR PENCIL. I remember looking at her and wanting desperately to please her but knowing fully well that I could not hold my pencil the way and form the letters.  Why couldn’t she just understand that this way was working for me….

So here I am in my last 6 mons of a doctorate program and am being yelled at for how I hold my pencil.   Oddly not much as changed in 20 years.

or the last 8…

On Thursday night and Friday morning I put on makeup, I styled my hair, I wore designer clothes….and went to my first peds interview here at home. I walked into my faculty interview and before I had barely sat my little spazzing butt in the chair Dr M looked me straight in the eye and said ” Amy, I am not going to interview you, I know you well and you will have no problem staying here, you fit in well here and we want you to stay. Now surely they are pros and cons for you staying in town  but just so you know if you rank us high, you will match here. Now what other schools are you applying to?”   I sat there in my smart suit a little stunned, I had prepared answers to all the usual questions.  I had not expected to be courted, to be wanted badly enough to not even be interviewed.  My chief resident interview strated similarly after we looked at cute pictures of his baby girl..”Amy, everyone knows you and likes you, we want you stay here so I am going to give you the 5 min speal about why you should.” And the 5 min speal was not some standard thing it was obvious that it had been well prepared with regards to me…these people know me well, they have had 8 years to study me.  And part of my wall melted a bit I walked out slightly intoxicated by the idea that it would be so very easy not to break the cycle and just stay here….

and here we are back to where I melted four years ago sitting in a Ruby Tuesday where my dad handed me a check of early inheritance.  And I dissolved into tears and called the med school admissions office the next morning to declare my intent.

so here I am laying prostate on a table with my teeth gritted and my eyes stinging wanting so badly to just say…STOP I have had enough but not wanting to appear…weak.

It is  so easy to just keep going, to just circle around and around and around…

Why my life will never be reality TV worthy…

I have had a relapse of the more severe anemia. My concentration at work is lagging and I am tired all the time. Its way worse than the hip issues.  Sometimes though all this makes me laugh. Maybe I laugh so I won’t cry.

Yesterday I came home during my roommate’s bible study. It was 9:30 time for my little anemic self to get ready for bed. Getting dressed and undressed on hip precautions (no bending past 90 degrees) takes twice as long and is mind-numbingly frustrating at times. I went to remove my socks with my good foot and in the process I pulled the scab off a bug bite. I am on Asprin to prevent blood clots post-surgery so I bleed from small cuts like I have stepped on nails. So here I am sitting there with blood running down my ankle. My house is full of strangers who block my way between my room and the bathroom. I am wearing only underwear on the bottom and a loose shirt on the top. I can’t put my PJ pants on because I don’t want blood all over them and all over my legs. I can’t wipe the ankle clean because I can’t reach it on hip precautions.  Finally I grab a blanket pool cover up thing from St Croix, wrap it around my waist, hop over to my flip flops (so not easy on a new hip) so I don’t drag blood all the way to the bathroom. Then I try to run fast  (as if I can run at all ever much less right now) through the hallway in hopes no will notice me running in a tropical pool cover up and night shirt with blood gushing from my ankle.  They did and they sort of stared at me as if I had lost my mind.

I turn the bath water on and stand there with my sponge with the long handle (compliments of Mt Sinai Orthopedics) and wipe away the blood and clean the tiny, tiny, tiny sore on my ankle. All that drama for a mm break in the skin. I walk back to my room, pull on my pants and laugh as I got into bed.  Then before I could read two pages I fell into the deep, desperate sleep of anemia.