Sakaiyah day

It’s been a busy week! We kicked it off last Saturday with a festival in West Philly, and the next day we had Sakaiyah, her sister Nevaeh, and some friends all the way up in Buck’s County picking apples. (We try to do it every season.) Like most years, it’s hard to tell by the end of day that we’ve even gone: All the apples are usually eaten before we make it back to the scale to weigh them. This time the girls went home with a total of two in the unnecessary enormity of a paper grocery bag. It didn’t matter.

OK

On Thursday, Sakaiyah got her very own day at school. The nurse dedicated it in her honor and in advance of the sickle cell walk. For the “dress down day,” students got to wear blue and orange – Sakaiyah’s favorite colors. In morning circle with the entire school, the nurse explained a bit about the disease and encouraged all of the kids to give Sakaiyah the “okay” sign to signify healthy, round cells flowing through her body…and to let her know that they’re “okay” with her.

Both of these events make me think of how far she has come in the past few years. When we started this project, Sakaiyah was  gnawing apples from the side of her mouth to avoid the discomfort of wiggly front teeth.  Now it’s her little sister Nevaeh who’s in that 6-year-old predicament. The 10-year-old Sakaiyah stands in the center of a circle at her school with a better understanding of her disease, some crazy long legs, and a blossoming love of basketball.

Playground

Playground

On Friday evening I missed a phone call. When I checked my voicemail later on that night, there was Sakaiyah’s beautifully husky voice saying:

“Hello Aunt Alison. This is Sakaiyah. I just wanted to talk to you and see how you were doing. Uh… I was wonderin’ where you was. Uh… I think Nevaeh wants to talk to you… Nevaeh!”

…Rustling…

“…Hello???”

“She’s not on there!”

“Wha…”

Click.

~~ Message. Saved. ~~

This called for a Sunday morning girls’ breakfast and playground adventure, for real for real.

The thing about making a film (and even taking long pauses from making that very film), is that you always feel (even inwardly, or ashamedly, or obligatorily) that you should have your camera. It is, after all, what you do. It is, after all, what we ALL do in this culture: record the mundane, the brilliant, the first, the almost moments…

It is not a new conundrum – the “How do I stay present in this moment when I am trying to document this same moment…?” (And then there’s this variation- “Can’t I let this child enjoy playing on the playground today without reminding her of her illness by filming her on one of her ‘good’ days?”)

So Sunday:

Girls at playground

Breakfast at Honey’s. (Note: One breakfast for me; two each for the girls. Seriously.)

The playground.

And no film camera. No moving image. No documenting.

These were phone-captured, aunt-“duty” pics taken in-between a mean game of catch.

A long and busy fall

Ready to walk

It was early September when I last wrote, and to be fair, it’s been a hectic fall.

The sickle cell walk was a great success, and once again Sakaiyah had a team walking in support of her. We even had a road marker made up this time! (Is anyone else noticing how big these girls are getting?!)

Breathing

I dropped off the face of the blog-writing-earth because for nearly a month I was down for the count with pneumonia. And in the hospital on oxygen. I mention this because after three days in there, with IVs, breathing treatments, shots in my belly, pain meds, vital checks, a spirometer, and bad hospital food, I got just a hint of a sense of what Sakaiyah must go through.

And I will take a moment to write that differently: a HINT. Not only that, the young woman on the other side of the curtain was in for complications with sickle cell. It was her first experience at the Hospital at the University of Pennsylvania, having “graduated” from Childrens’ Hospital of Philadelphia. It sounded like a very difficult, very lonely transition. In contrast to the vibrant, colorful, activity-laden, energetic environment of CHOP, at least our wing of HUP was decidedly UNvibrant. It broke my heart to hear her crying.

Now it’s suddenly December, but we’re back on track. In late October we were happy to learn that the film received an Art and Change grant from the Leeway Foundation, an organization that supports artists whose work aspires to promote social change. The Sickle Cell Disease Association|Philadelphia and Delaware Valley Chapter was kind enough to vouch for us and act as our change partner. Click here for more information.

The next big event is only 13 days away (and counting, believe me she’s counting): Sakaiyah’s ninth birthday!!! In anticipation: Build-a-Bear. 

Build a bear

15th annual Walter E. Brandon sickle cell disease walk

Sickle cell walk

This year we walk again in support of Sakaiyah and all of those affected by sickle cell disease – patients, family, and friends. On Saturday, September 22 at 8:30am the 15th Annual Walter E. Brandon Sickle Cell Disease and Walk will begin in front of the Please Touch Museum in Philadelphia. Put on your sneaks and join us! If you can’t make it but are inspired to donate, you can contribute to the Sickle Cell Disease of America Association and Team Sakaiyah here.

Newsletter

Fingers crossed, we are going to get our interview at Children’s Hospital of Philadelphia within the next couple of weeks. Is it possible after eighteen months of anticipation?!

In the meantime I have been transcribing interviews and reviewing footage; Sakaiyah’s just returned from her second summer at Dragonfly Forest – an over-night camp experience for kids with sickle cell disease; and the Sickle Cell Disease Association of America – Phila. and Delaware Valley Chapter (SCDAA-PDVC) has just released the third issue of their newsletter which includes a write-up of My Cells are Red Bananas. It’s been a busy summer already!

To read the current issue of the SCDAA-PDVC newsletter, click on the image at the head of this post.

 

 

Sickle cell advocacy day

I’m a little behind in posting things, because believe it or not, it’s been that busy! (This is a good thing!)

Advocacy day

I initially contacted the Sickle Cell Disease Association of America (Delaware Valley chapter) at Dr. Robinson’s suggestion, to see if they might be able to provide me with a space for our interview. While I was aware of the organization, and had in fact attended and filmed two sickle cell walks with Sakaiyah sponsored by them, it was always one of those I-know-who-they-are-but-they-have-no-idea-who-I-am deals. Being visible and vocal, making contacts, and talking about my project are not things I’m particularly great at. Shyness and documentary filmmaking are not your ideal combo.

True to the adage that one-thing-leads-to-another, my request for an hour of office space evolved into another opportunity for the film and for my own learning. Executive director Stanley Simpkins and social worker administrator Rev. Zemoria Brandoninformed me that May 22nd was a state-wide Sickle Cell Advocacy Day. In less than a week they would be chartering a bus to Harrisburg to advocate for the retention of a sickle cell line item in the governor’s budget.

What fortunate timing! At 7am on that Tuesday morning I was boarding the bus with patients, family members, social workers, and board members of the SCDAA. The day was both sobering and hopeful. Sobering for the following reasons:

While last year’s advocacy day was instrumental in preventing sickle cell disease from being consolidated into a single line item for all blood disorders, funding cuts have continued. This year the goal is to again retain the line item, and ideally, to restore all previous cuts.

The hopeful part of the day was witnessing the dedication and commitment of the sickle cell community. Supporters came from around the state to attend the press conference and to bring their concerns to the attention of individual legislators.

The ball keeps rolling with an intimate and encouraging experience of the ways in which people rally for a cause and for one another.

Motivation

Even though I am a firm believer that things kind of happen as they should, it’s really hard to remember that when things are simply not happening at all. That has been the case for quite a few months with this film, and in all honesty, it’s been pretty discouraging.

Then a few weeks ago someone told me I needed to hurry up already with this project or to move on, to find something else to focus on if this wasn’t going anywhere anytime soon.

Being unsolicited (and unhelpful) advice, I silently (and not so silently) fumed and despaired about all of the bureaucratic red tape I was tangled in. Then, with teaching done for the semester, I gave myself a deadline. By the end of the summer I will have an edit. Even if it means that my supposed-to-be feature ends up as a five-minute spot, I will have something to share with Sakaiyah and the community by then.

(Side note: This frustration > motivation redirect took some serious effort!)

After making that decision, albeit under duress, things have started coming together. The past three weeks have brought some amazing interviews, interactions, and insights. It’s almost as though the universe is saying, “I told you so.”

Dr. Renee Robinson

Dr. Renee Robinson

Eighteen months after first contacting Children’s Hospital of Philadelphia, I am still unable to access Sakaiyah’s doctors to get a comprehensive explanation of her illness. I will continue to work for it. In the meantime, however, Dr. Renee Robinson, a health psychologist from Saint Christopher’s, gave me an incredible interview about her work with chronically ill patients and their families. Over the course of an hour she spoke eloquently and informatively about the psychological, social, physical and environmental factors that affect children and families living with sickle cell disease.

“Pain is not just that feeling, pain is an emotion, pain is a state of consciousness, and pain takes over a lot more than we really think about.”

Her words resonated with me and what I have witnessed of Sakaiyah’s experience. Additionally, I have more insights into some of the ways in which a family copes, and the need for our global community to become more aware.

Microscope time!

Microscope

Thanks to Karen Grossman, a middle-school science teacher in the area, Sakaiyah finally got to see those tricky, elusive blood cells. Though a little low-energy after a very early morning of cartoons, we made it to the school by 12:30pm. The microscopes were already out for us, each with a slide. We would be able to see a whole blood smear alongside an anemia smear.

I think I might have been more excited than Sakaiyah! I can’t remember the last time I looked through a microscope, and either blood cells have gotten cooler over time, or I have a new appreciation for them. It was amazing. The healthy cells were perfect circles, plump, small, and uniformly distanced from one another. The anemia cells were distinctly different. While still round, the centers were dark and deflated. The cells were clumped together and erratically spaced.

Sickle cell

Sakaiyah looked through both microscopes and declared that they were exactly the same. Then she put her head down on the desk. That’s when I looked for myself.

While her response was clearly the result of being over-tired and not feeling well, I also think that Sakaiyah wasn’t seeing what she thought she would. The characteristic sickle shape that we’d been teaching her about wasn’t really there. The sample was an anemia smear, butnot specifically sickle cellanemia. That slide, though it had been ordered, hadn’t arrived yet. Not wanting to lose the opportunity, we shot without it. I’m glad we did, but I hope that we’ll make it back another time to give her a clear view of what her blood cells really look like.

Blood cell

After the scopes, Karen Grossman (so awesome), brought out the play-dough. And a blood cell stuffie. Together she and Sakaiyah made examples of whole blood cells and sickled cells. They were nearly one million times bigger than the actual cells we’d seen under the scope! It was nice doing something in three dimensions after so long of drawing pictures. We brought them home in a ziplock bag (where they stuck together into a fantastic clot.)

It was really great to get Sakaiyah into a different environment, and to have her interact with someone with the knowledge and the tools to show her more than I could have done on my own. This is the direction I’m trying to move us into. It’s easier said than done. Getting cooperation from institutions, not to mention the attention of a now eight-year old Sakaiyah, has never been more challenging. That’s why I’m so thankful for Karen and her patience!

Welcome to Vermont

Milking

It’s maybe the most cliche image I could have started with, but seeing Sakaiyah (and Nevaeh!) milking a cow was about the coolest thing ever. What better way to show that we all made it up to Vermont! Sakaiyah remained healthy for the last couple of weeks before our departure, and on Wednesday, June 29th at 6am we began our 9hr road trip. There was a lot of Michael Jackson happening on the road!

The first night everyone was exhausted, and Sakaiyah was very homesick. She cried lots, complained of pain in her back, and took a long time to go to sleep. I was worried that being so upset would cause her to spike a fever, and that these episodes would repeat every night, but both girls were amazing. Although they were excited to share what they were doing with their mom, they weren’t asking to go home. For me, sharing where I’d grown up, knowing that it was a completely different experience for them, was amazing. They were remarkably participatory and after six days they had interacted with animals, floated in the lake, stood on top of a mountain, taken a factory tour of Ben & Jerry’s, and watched the fireworks!

eating ice bream_1_squarespace.jpg

Sakaiyah stayed healthy for the entire week, and while I did some shooting, it was more of a documentation of her adventure, less a thread in the narrative of her experience of Sickle Cell. 

Canoe adventure

Since coming back I have begun to string together some of the clips. There’s something very freeing about releasing myself from heady censorship (the self-imposed kind that immobilizes and prevents playful experimentation with footage) in favor of enjoying the individual moments captured on this trip. The rest will come in time.

Church Street, Burlington Vermont

In a matter of hours

Pool time

It was HOT in Philadelphia on Memorial Day this year, so we all relaxed in the pool (read: Olympic-sized puddle) in the back yard – Sakaiyah, her aunts, uncle, grandmom, and mom. It was a nice afternoon.

About two hours after everyone left I got a call from Landa saying that Sakaiyah had a fever and was on her way to the hospital. I was surprised. She had looked a little tired, but she had seemed fine. It wasn’t cold, she had been drinking plenty, and had been playing without complaints.

When Sakaiyah, or most children with Sickle Cell get a fever, they must be admitted to the hospital for doses of antibiotics and monitoring. A fever indicates infection, and people with Sickle Cellhave compromised spleens (if they even still have their spleens), and they do not fight infection well. So, while pain that cannot be managed at home may land a Sickle Cell patient in the ER, it is a fever that is sure to admit them.

Sakaiyah spent Monday through Thursday in the hospital, and I visited with her every day while her mom was at work. It is the most time I have spent with her when she’s been unwell.

The thing with kids in the hospital is that though they hurt and cry and are all kinds of uncomfortable, they also know the routines and the power of “manipulation.” Sakaiyah knows she can order McDonalds over the phone and watch as much T.V. as she wants to. This was the general state she was in most of the time I was with her. She participated in activities (though she was escorted there in a wheelchair), she wanted to play Play Station, and she asked for McDonalds (constantly).

But on the second day, as she was eating lunch, something went very wrong. At first Sakaiyah complained that her legs felt funny. And her pelvic bone. She said she was numb inside, but that it didn’t hurt. Within ten minutes she was jolting violently and uncontrolably, she was screaming into her pillow, and she was terrified. I got into the bed and held her as she writhed. I picked her up and rocked and walked her down the hall as she shook and thrashed. (I told her it was okay and she told me it wasn’t.) She started hallucinating, thought the T.V. was upside down, looked at me with horror because I had no nose. Despite seeing patterns when she closed her eyes, she couldn’t keep them open and she cried and mumbled in a trance. Her temperature rose to 104.5 degrees.

Dilauded

When her mom arrived she scooped Sakaiyah up and rubbed and patted her until she fell asleep. The drs. concluded that she’d had an adverse reaction to the pain medicine. I was at a loss. I’ve never seen anyone suffer that way in person, let alone a child, or someone I love, or while wearing my sometimes-filmmaker hat. I was choking on sadness and guilt and documentary ethics. I shot some of it. Hit the button and let it run until Sakaiyah asked me to stop. Now, two days later, I look back at the footage and it breaks my heart. I listen to it and ask myself how much of it is in the interest of teaching, and how much of it is taking advantage of Sakaiyah’s suffering. I believe that I am a compassionate person, and I knew these feelings and issues would come up as I was filming. It will always be a balancing act, negotiating the tension between that theoretical discourse of documentary ethics and the intimacy and love I have for Sakaiyah.