A STUNNING HUMAN BEING: PAMELA'S STORY
Life with Glioblastoma Multiforme, a Rare Terminal Illness
ON WEDNESDAY, JUNE 18TH OF 2014 I RECEIVED AN EMAIL.
“Hello, I‘m a thirty year old diagnosed with GBM six months ago. I love your story telling and want to be part of the project. Please get in touch with me when you can. Thanks. Pamela”
In that email she went on to explain that she had found my work on Instagram and wanted to be a part of my project and couldn't think of another person who could tell her story the way it needed to be told. I immediately set up a time to call her. We ended up talking for a while and eventually that phone call led to me getting on a plane bound for New York City.
This is why I got on the plane and why I will be forever changed by her story. This story, Pamela's story, is a story of love and of grief, but most of all it is a story of the grace that is shared between a husband and wife, two lovers or partners when they are suddenly faced with a twist in their journey together.
I’d like you to meet my friend, her name is Pamela. That guy with her? His name is Lemin. He’s her husband. During this story they celebrate 1 year of marriage. But this isn’t an anniversary story, well not your typical anniversary story. I met them on a Saturday, August 23rd, 2014 around 11:00 am. at Grand Central Station in NYC.
Pamela is 30 years old. Pamela has GBM Stage IV. For those of you who don’t know what that is, it’s short for “glioblastoma multiforme,” a most rare, yet aggressive form of brain cancer. GBM is a brain tumor, one that latches on and will not let go. Typical treatment is surgery, radiation, chemotherapy. Survival rates for those who get treatment is 15 months, those without 4 months. I only tell you this because we as humans connect to facts first. This story I am about to tell involves more than facts, it involves love, resolve, and a beautiful city we shared as "ours."
MARCH 26TH, 2014
“i n t r o d u c t i o n Hello everyone. My name is Pamela. I am a thirty year old female who is living with cancer. I am originally from this gorgeous country called Taiwan. I have some really terrible days and I have some really good days that I wish can last forever. I have all the treatment for now behind and after that I am going to look at other options out there, immunotherapy anything. I am going to try everything. Thirty is too early. I have so many things I want to do.”
MAY 1ST, 2014
“Last year today, I married the love of my life. Happy Anniversary Remy. I’m sorry I’ve been such a sulk this week from chemo. I promise I will be better next week.”
JUNE 13TH, 2014
“Do you? My love, Do you remember the first time we met? it was 7:30 on a warm December evening in 2009 and I had misread the invitation. I arrived at my sister’s birthday dinner at Otto late. But the table was not ready yet so the group crowded near the entrance. You were standing with your back to me when I made my grand entrance.”
A DOG PARK IN MANHATTAN
So far I have been sharing with you Pamela’s story in her own words, taken from her online blog. I have a hard time writing too much about my experience that weekend in NYC. The details of our walk around Manhattan and Chinatown are mundane. Mostly just walking and enjoying the day. It was time slowed down. I can’t remember the last time I felt so comfortable. I was falling in love with the city again. I was inside Pamela’s world. And it was lovely.
AUGUST 11TH, 2014
“W o r l d The world is passing me by. Literally. When my husband drives me around, which he does everyday, I can no longer focus my eyes on the streets as we zoom by. I see everything at a glimpse as they pass me by. Unable to focus my gaze. Especially on my left side. I feel like I am losing in this battle. But I don’t want to be remembered as a loser. I am a strong person; stronger than I ever imagined myself to be. I want to be remembered as someone having put up a good fight. I don’t even like the analogy of a cancer fight. Its underlying meaning is a win vs a lose. There is no loser in this battle. This is life. Just because we pass on due to cancer, like some in an accident, others in other ailments, does not mean we lost. This is almost a battle that cannot be won. We all leave this earth eventually. It is not ours to have for eternity. I will cherish the time I spend here. May you also do so at your leisure.”
Pamela and Lemin treated me and my companion, a fellow photographer, to a meal in Chinatown. It was nothing short of amazing. We had curry and tea and sat in the window, watching the world pass by. After we went to the market, which is something they do often.
AUGUST 26TH, 2014
“L i v e I don’t feel alive anymore. I am on this new trial. Clinical trial. They have me on a not-yet-approved chemo. ‘They’ are the doctors and drug companies. I do have a say. But I want to drop out. Which they’ve said I can do anytime I want. Do I want to die? No. But is this living? No. I cannot walk outside without a cane. I can’t move because my joints hurt. I can’t roll over the bed because my limbs get caught. I can’t move around in my own apartment.”
SUNDAY IN THEIR HOME
On Sunday, I visited Pamela and Lemin in their home. Pamela had been doing some art therapy and her work was on the walls. I took images of everything. It’s not something any of us wants to think of, but I wanted to document what it was like to not have her there, for it to be empty and the only items left behind were photos and memories, pillows, and her chair. Pamela put on her wedding dress. I asked her to get comfortable to just talk and go through the images on her phone. Like any of us, her phone is a repository of memory.
SHE ASKED FOR ONE PHOTO
Pamela asked for one photo. It was of Lemin sitting at his desk in their bedroom. I felt a deep pain in my heart coupled with a spark of joy. It is the same image I would want of my beloved.
We were alone. We talked, we laughed. I asked her what the hole in the closet was for. They had a little dog once. Then she led me over to her drawer, her “cancer drawer.”
SEPTEMBER 2ND, 2014
“f r i e n d I have some suggestions for people who have friends who are critically ill. There is no perfect way to deal with this situation if you find yourself in one. Life is not perfect. What you can do is just be there. Be here. Ask your friend how he or she is doing. Don’t worry about people’s sleeping schedules. Call. Leave a message. Your friend will get back to you when possible. Check in with him or her. Let them know you care. Show it. Don’t be shy. Life is too short to be shy. Show it and we will see.”
BROOKLYN BRIDGE PARK
Our two days together was coming to a close. I admit my heart was heavy at this time. I was full and besides pouring everything I had into my camera on film, I couldn’t pour anymore out. But I wanted more moments. I wanted more time with both of them. We drove over the Brooklyn Bridge. Pamela wanted to see the carousel and perhaps, if her medicine would stop making her dizzy, ride it. Lemin let us out and parked the car. She held my arm as we walked.
OCTOBER 12TH, 2014
“F i r s t s This month is a month of firsts. First time I stepped into a Sephora this year. I have been afraid to visit the store this year fearing the toxins that are packaged in beauty products. I got a sample of the pharrell x comme des garçons perfume. I attended the only wedding I will be attending this year. I went just south of the Bronx to a wedding held by the hudson. It’s now fall so it was quite cold. But I felt good. I’ve never felt so good, at least not this year. I had my first sip of champagne at the wedding. My first and only sip of the year. I don’t miss alcohol and what it does to my body. I got a manicure done with my sister for the first time this year. It is my only manicure this year. It was fun hanging out with her again. She never liked hanging out with me when we were young. My disease has changed things. Sometimes she feels further. But most of the time I feel closer to her. I remember the times when she brushed me off and treated me like bad acne. Now, I think what a blessing it is to have a sibling. We can compare notes on what we remember from our childhood. Most of the time we have vastly different recollections of what happened. It’s allot of time to play that game, “remember that time?”. What a memorable month it has been.”
AN EMAIL FROM JUDITH TO PAMELA
Judith was a woman that Pamela met in her writing class. On October 24th, Pamela heard that Judith had passed on.
“I send you love and blessings. You’ve got a hard path and you are handling it with grace, by doing the best you can. Don’t judge yourself. You are a stunning human being and I’m glad to know you.”
I LOOK FORWARD TO COMING BACK
Pamela‘s last blog post was on April 30th, 2015:
“s t a r t Today I am reminded how little time we all had to grow up. It seems like it was yesterday when going to school with not a care in the world was just an after thought. I am starting another round of radiation. Re irradiating so soon after my first round of treatment is bad. Re irradiating in the brain stem is catastrophic. There is virtually no data on how I will turn out. Good and Bad. I’m not sure scared is how I feel. Because I am slipping away otherwise anyways. Everyday I feel slightly worse. More difficulty walking. More stumbling. More double vision. More tingly on my right side. Less control of my left fingers. Less strength to do stuff. Less desire to do stuff. So the rationale is let’s try an aggressive treatment since the tumor is aggressive. Or at least the symptoms are ever changing. Let’s do something drastic and quick too. I look forward to coming back again. Fresh start. shit remy says: you’re doing great.” — chewey goes to new york, living and loving the zoo
I spent many months after documenting those two days emailing, texting, and sharing our lives together on social media. Her last email to me was her worrying my safety with the flooding in Houston.
SEPTEMBER 30TH, 2015
I just spoke with Pamela’s husband sitting in my car after class. I want to get this down now. It is not often that we get this kind of closure. It is not often the words “in a better place” don’t sound hollow and empty.
On August 8th, 2015 Pamela passed from this world into the next.
New York will always be our city Pam.
Lemin, I hope the sand and sea renews your soul.
Shit, you’re doing great.
To Alan Abrams: for being my partner, my confidant, and my friend as we shared those two days journey in NYC.
To Little Film Lab: for sponsoring this story and providing all the developing and scanning. Your loving touch to these images (even through the tears) is a gift.
To learn more about Glioblastoma and other brain tumors or get support please visit The American Brain Tumor Association.
© TRACY BARBOUR 2018