the toughest woman I know

We had a patient today whose mother was terrified of letting her son with acondroplasia sit or push push toys.  It was out of control. We had another patient whose family refused to encourage him to do the necessary rehab so he can get better. My attending came out of the second room and said the following: “Amy, your Mom was a toughass.“  After I nearly died laughing, I agreed with him.  My Mom is a rockstar. NO really she is.  In that moment he was implying that I never ran the show, my Mother always gently although forcibly made sure I did what I had do rehab wise. But she also let me be a kid.  He proceeded to talk about her for a little while. She was the standard this afternoon for good parenting.

And really if I am half the parent she is one day, I will be happy with myself. Not only did she raise me to be a self sufficient, miraculously tall and unusually driven (possibly to the point of insanity) dwarf/gimp, she raised two other remarkable young women. She cared for us, she disciplined us, she loved us,  she prayed for us. and she fought for us!

Mom rocks my world.

Happy 50th Birthday Mom!

mutant anomalies……..

Its hour 5 of spinal surgery.  Surgery number three in my two days of marathon complicated crazy skeletal dysplasia cases.  Even though I have been given a stool to sit on. I am tired. Shivering and Sweaty from sitting in one position all day.  It has been an almost DISASTER case, we loss motor signals and for a few terrible minutes we thought we had robbed a little girl of her ability to move or even breath…I prayed the whole time terrified of the power we had over these lives. All I could think of was the conversation we had when she fell asleep about how she liked to read June-nee B Jones and how her Dad hugged her before he left her.

We are closing.  Its me the fellow and the resident. The fellow talks about how much he loves children and resilient and adaptable they are.  I agree with him and smile down at our young patient so  grateful for her resilience today.  Then the fellow goes on to say that eventually around late adolescence he finds his patients changing particularly his special needs patients they lose their adaptability…they become lost. He steals a glance at my eyes and says Did that happen to you, Amy?  Before I can answer he says ” But you are tough.”  There were a million things I should have said. I should have talked about transition and how hard it is in a world that does not make niches for disabled adults, where there is no health insurance, where adult doctors are terrified of you and you have to go from being a cute, pitiful disabled child to a dependent adult who feels worthless in a world that does not have a place for them. But my pride got in the way….I stood there with my shoulders back, head held high and told him that the way i thought about life was simple I figure out what I want and I figure it out.

He smiles.  I am not a good surgeon. Surgery is right up there with ballet dancing in my world. But these people respect me in a strange way, as if I was a really brilliant surgeon.  Maybe its because I am a good clinician, maybe its because there are just nice folks. Or maybe its because I prove that what they do is worth it. That spending 7 hours on a 7 yo with a disease you have never heard of whose neck is collapsing matters.

The surgery ended and we did one more. Then we had clinic today. One of my Kniest patients came back after two weeks of rehab. We have become friends, I spent nearly every other night with them since they have been here. The little girl has asked repeatably if her Dad can adopt me.  I took her history close to the end, she looks right at me and says YOU WANT SO MUCH INFORMATION, YOU ARE A SPY.  The NP who works with my attending was just outside the room at that moment and tells the little girl that I WAS HER SPY.  Its true….Its true.

I am a spy. I am a spy in the OR from the land of patient. I am a spy in the exam room from the land of doctor.  In both worlds I live but in neither do I fit in entirely. My knobby hands and stiff wrists and tired knees give me away in the OR  and my knowledge and curiosity gives me way in the exam room.

for a moment I felt a little homeless. a little lost. a little in limbo between my parallel universes.

in the end I looked over at my young patient and I smiled.  I am well informed my friend.

Because I know how scary it all it is, how vulnerable and how big the risks that we take with the fragile children that are entrusted to us but I also know how tough we are, how hard we  are willing to fight and how much it matters.

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.

Children Keep Dancing…

There are a million things to say about Kenya which I can’t even begin to process

Today I started my peds ortho away with my childhood doctor. For starters there are ghosts, memories, hopes, dreams, sleepless nights, screaming, pain, sweat, blood and tears behind every corner even with the remodel of the hospital the worst and yes even some of the best of my childhood is contained within these walls. I tred carefully for as has been the theme of the last week I stand on sacred ground.

As I child I feared/loved my doctor and he haunted my steps at times, made me think before I lept. Now he is my attending. A strange change of power….its odd for him too. About half the time he introduces me as his former patient, the other half as a random med student.  He teaches me quite passionately and patiently. he is far more patient with me sitting in the OR or struggling with my sewing than any surgery attending I have ever had. Of course he is. But I am wary with him,  its awkward a lot but it works best when he is teaching me as my attending and not trying to process the oddness of me at 25 grown up, on my own and not his patient.

There are strange moments though where its very hard for me to sit back and play med student.  I scrubbed in on a Cervical fusion today (ha!). The induction took a looooooooooong time. It was a skeletal dysplasia kid, one of my kin.  The neurosurgeon made several jabs about how my doctor’s “population” always took this long.  I bristled, my face was hot. hey buddy, those are my people.  I remember once there was a ENT who made several really unnecessary comments about Chinese  students with a Chinese student sitting right there.   I remember thinking what an idiot for not even noticing the med student was Chinese for crying out loud. But here I was pierre robin in all siting there staring at this highly educated doctor and I realized that he had no clue.

In a way it made me happy. Sometimes I forget that I can do this. Blend in if I am sitting. Later in the case he starts to inquire what a good Southern girl n from such a good school was doing in Delaware.  I told him I was referred here as a child, he looks at me and still doesn’t see it. Finally my doctor rescues him, she has Kniest…she is just tall.

Good for her, neurosurgeon says

Not good for her orthopod says

Honestly its all I have known I am neutral on it at the worst, I say really not wanting to debate my perspective on losing/winning the genetic lottery for the whole OR.

then they go talking about how people with conditions go into what they know.

I was glad more than anything that the secret was out I felt so much more at home among my people than I did in the blue scrubs.

African Arrival

Jan 6 will remain as one of the craziest most out control days of my life. I awoke at 6AM in Balitmore, at noon I was interviewing at Johns Hopkins and by midnight I was crossing the Irish Sea by air.  I wouldn’t recommend it honestly. By the time I got to London, I was totally fried. It has snowed there the day before and everything was terribly backed up in DC becuase all London flights had been canceled. I nearly missed my flight because I couldnt’ get through the lines. I got the 3rd degree in security between the new shiny hip and  many strange tools one carries in a carry-on to go be a doctor in Africa.  I did though have the amazing blessing of being ugraded to business class. And while that was pretty spectaclar I felt like an idiot because I couldn’t figure out to make the bed thing work or the TV or really anything. But I can say I have now flown first class on an overseas flight. The rumors are true, there is real silverware, free wine and flat beds.

London was beautiful from the air, the english countryside was bathed in white.  My connection went flawlessly and although my flight got delayed a bit on the ground it was a great flight. One I will never forget. I watched the map program every couple of minutes once we hit the Med. Sea wanting to see the coast of Africa as we crossed it. It was beautiful and shockingly different than the coast we left behind in Italy.  I watched the sunset of Sudan and by the time we entered Kenya, I couldn’t sit still with excitement. The last time I did this whole go to a new country/new continent thing on my own I was 19 on my way to Romania. I was considerably less freaked this time around. I got my visa without problem despite the fact I accidentally left my original copy of my yellow fever vaccination in America on my scanner. All of my luggage made it and I was picked up by a kind man named George who took me to the Mayfield guesthouse. The guesthouse is lovely, full of  African art, mosquito nets and people from all over Africa who are passing through. I shared a room with a lovely girl from Ireland who is going to teach in a primary school in the North of Kenya.

I didn’t sleep much but I enjoyed what little I did get. I woke up early since my roommate was on her way north.  Took a shower, felt human and then explored the guest house. We eat meals family style here. The rest of the medical team that was supposed to meet me in London finally made it. Two of them will come to Kijabe with me. While they slept I went to orientation at the AIM office. I also saw Nairobi by day.  The smell is a cross between the humid, thick magic of a Carolina magic and the strange pugant tang that I associte with Bucharest. I am not sure if its a city smell or a developing world smell but it smells like home. Kenya has had two years of drought but its been raining and everything is green and there are many flowers.

Orientation was oddly interesting we talked a lot about the history of Kenya and plans for medical missions here in Kenya. I will write more tomorrow once I reach Kijabe. For now I am exhausted…