To Be Known & To Be Understood

WEEKS 26 – 27

January 11 – February 8, 2015

I know it has been a long time and so much has happened! I had some fabulous clinical experiences (saw a BUNCH of colonoscopies), made some tough decisions (like quitting orchestra), found a lab I am super enthusiastic about (and will share in a later post!!), grieved the death of a very good friend, finished block III and started a new TV show! There is so much to say, but for the sake of time, I will tell you ONE story about my life in the past few weeks.

Before I begin, I have to share a thought I had today that I think many of us can relate with:

ONE OF THE BEST THINGS IN THE WORLD IS TO BE KNOWN AND UNDERSTOOD. 

This is what we are all searching for, I believe. Being known, to me is the most satisfying when it comes with understanding. Oh wow, it is such a privilege when someone takes the time to both know and understand you. It is so easy to just do this superficially–to assume who someone is, what they think, what they even like based on your own perceptions instead of evidence only gathered from true knowing. There is this cheesy bit from James Cameron’s Avatar when the Na’avi (Blue cat people) say to one another, “I see you.” In this case, “I see you” can be a greeting, a parting or even a profession of love. But as silly as that movie was, it hits on something with that sentiment. To be seen. To be known. To be understood is just wonderful and one of the best things you can do for someone you think you care about. To be understood demands relationship building, time, patience and commitment. And, when people take the time to understand people it is so much easier to love them.

I think all we can do to be known and understood is to be true to ourselves and open. The hard part is to take the plunge into knowing whom someone truly is and all the wonderful, ugly and complicated things that may involve. We can be so lazy about it because to know is to be courageous in a way. Perhaps this is the secret to true friendships.

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The Pediatric Sickle Cell Clinic 

On January 15th, I finally had the chance to shadow Dr. Piccone in the Pediatric Sickle Cell Clinic at UH. I have had a lot of exposure to hemoglobinopathies–in my family, through undergraduate research, and my own personal writings for both school and for myself. The one thing lacking has been patient interaction so I was so excited to see what Dr. P does. I have wanted to be a hematologist for before even starting college. But, this was all theory and feeling. So naturally, I was both excited and afraid of my coming experience. I was excited to finally have the mystery revealed but also scared that it would not be what I expected–that I would hate it, and then have to look elsewhere in medicine to practice.

Bless the LORD my fears were not so! It was amazingggg, and I was useful. Dr. Piccone would leave me alone with a nurse counseling a new mother with a baby girl with SCD. The mom was 19, and I could not imagine having a baby at that age and being emotionally available to take care of him or her. In fact, having one within the next 5 years would be quite the shock. The mom also was unemployed (along with her boyfriend who could not make it) and had a past history of severe anxiety. She had an anxiety attack and fainted two weeks prior, and she said that having a baby that had to go to the doctor so much and being a new mom was very stressful. Given all the challenges I knew she would have to face having a child with SCD, she was still so happy to be a mom. That baby was so cute too!

But, what grieved me was how little the mom knew about SCD. She had been counseled by a doctor before on the disease, but I am not sure how much she had retained. When the nurse left and told the patient to ask me more questions if she had any. The mom asked me, “Will it go away? Is it a disability?” And, I realized that I had to tell her that SCD doesn’t really go away (unless kind of with bone marrow transplantation) and as for a disability, that depends on a lot of things. I said that many people with SCD would not view themselves as disabled at all, but good healthcare could help keep her daughter as healthy as possible.

Babies with SCD appear quite normal usually because they are still expressing fetal hemoglobin a few months after birth at high levels instead of their HbS. Some parents at this stage do not know what could be ahead for them, and with her case, I pray that things will be okay. The mom of the baby did not know she was a carrier of the SCD trait until she was pregnant with her daughter!  There are so many challenges. I thought over my Urban Health Pathway project, maybe babysitting or helping new parents or parents with young children with SCD keep with hospital appointments could be a good service project (will table that for later).

In another patient room, I spoke to a family with a grandmother, mother not too older than myself, and 3 children. 2 of the 3 kids had SCD–a boy and a girl both around age 10. When Dr. Piccone dropped me off with the family and the same awesome nurse I was with before, the nurse was was asking the boy about why he slept on the floor.

Do you have a bed at home? 

He nods

But you don’t like sleeping in it? 

He nods again and his mother interjects, “He wets the bed sometimes.”

And then it clicked for me. This boy with SCD would rather sleep on the floor than in his bed so he wouldn’t wet it.

I am not a crier, mind you, but when I looked at him, I almost cried because this all felt so personal and familiar to me.

The nurse held him gently around the shoulders and said, “This is not your fault. Many young kids with sickle cell have difficulty concentrating their urine. I just want you to know its not your fault.” He looked like he was about to cry and it took a lot for me to stay professional and hold it together.

I touched his shoulder and told him about my siblings and the similar experiences they had. He seemed to feel better at this. I said, “It [the bed-wetting] will go away.” (as a side-note: bed-wetting is not that uncommon and happens more in boys than girls. It also is very much hereditary. It can be so psychologically painful for children and their parents–especially if the child is blamed for it but it is not uncommon! Do not despair if you know a child dealing with it. Talk to a doctor…)

His sister, also with SCD was quite rambunctious. Her mom told the social worker also in the room that the girl was getting D’s and F’s recently, but she showed me her folder of graded homework assignments and they were ALL A’s. She likes to keep the good ones. “Her grandmother helps with her homework,” her mom said. She showed me a science assignment she did on her own and got a B. She was so proud of it. She and her brother were sharp kids! My philosophy (and parent’s) is that most children can be A’s students if pushed. I know there are exceptions to this rule and many kids with SCD miss school and are sick often, but they can do well. I have seen it. But, if mom or dad works long shifts and grandmother can’t keep up with your math homework anymore, how can they succeed academically? (SCD tutoring program…tabled idea for later). The girl picked up her grandmother’s phone and called a friend to tell them they had a nice doctor named, “Tolu.”

One of the best moments of the day was when Dr. Piccone gave them some sandwiches, juice and the 10 yr old brother a soccer ball and Walmart giftcard (his birthday had just passed). The clinic has a few fridges with snacks and sandwiches for kids and the families. They were over the moon to get the stuff! This clinic is so awesome. Dr. Piccone talked not only with the kids individually but with the mom too to see how she was doing. Also back with the baby earlier, Dr. Piccone listened to her heart and was able to suspect a ventricular septal defect just by listening (yay internal medicine). While playing Snakes and Ladders with the kids, the sister with SCD told me, “You’re a nice doctor.” I had overheard her on the phone earlier and told her I wasn’t one yet.

“I am a medical student learning how to be a doctor. One day I will be.”

That did not seem to matter to her. I was in my white coat and all.

She said, “I want to be a doctor when I grow up.”

My heart literally (in the Parks and Rec Chris Traeger way) melted.

When we left the room the nurse told Dr. Piccone, “She’s good. She told them about her brother and it was great.”

Dr. P smiled, and I thought…. “Maybe I can do this. I think I can love this.”

Perhaps one of the things that draws me to medicine–is that it allows us to both know and understand people, and the many things that afflict them. It was truly a privilege for me to see what I saw in the Pediatric Sickle Cell Clinic that day. One of the best things in the world is to be known and understood. When patients feel this way, it makes all the difference. I hope that I can never lose sight of this when I become a doctor, and I will just have less time to know people as I run from room-to-room.

One of the best things in the world is to be known and understood.

And one of the greatest honors is to know and to understand.

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