Brain Aneurysm Survivors Photo Project – Portraits of Warriors
Before I had a brain aneurysm rupture, I knew nothing about them, other than, it’s that scary thing when something bursts in the brain and the person dies. I didn’t know it was a thing you could survive. I didn’t know it can be hereditary. I didn’t know it can be caused by high blood pressure. I didn’t know it’s more common in women, specifically women over 40, and especially women of color, but it can happen at any age. I didn’t know there are so many other survivors who went through the exact same thing as me.
Over the past few months I have started attending a Brain Aneurysm support group here in NYC, and joined an online support group on Facebook as well, and started to get to know so many people who survived. Pretty soon, the idea for a photography project was born. I wanted to meet these amazing survivors, and give them an unforgettable experience that’s part support group, part glamorous day of beauty and photos. I have to say the first session was incredible, meeting all of these women was an absolute honor and the fact that all of our stories and struggles are so very similar.
The main symptom of an aneurysm rupture, something we all experienced, is an extreme, sudden onset headache – worst pain imaginable, simply indescribable pain. Some of us heard a thunderclap or felt like we were hit in the back of the head, or like something snapped. If you ever feel a headache like this, get medical attention immediately. You may have just minutes to get to the hospital. Brain aneurysm rupture is fatal in 40% of cases, it’s extremely serious.
If you get frequent headaches, stiff neck, blurry vision, you need to get screened. If someone in your family has had a ruptured brain aneurysm, you need to get screened. It is advised that you get an MRA/CTA scan to check the arteries in your brain, as this is something that is hereditary.
According to the Brain Aneurysm Foundation, 1 in 50 people has an unruptured aneurysm. All of us shared the same feelings about screening – that it should be more readily available, more routine, and that it shouldn’t be such a struggle to get approved for an MRA scan that could save someone from experiencing a rupture. More people should be aware that it is hereditary and it should be something that’s asked on medical history forms.
It is my hope that these women’s photos and stories helps someone, that it pushes someone to get screened, that it helps save someone’s life.
I would like to share Tracy’s thoughts. She survived an aneurysm in 2004, and this is what she wrote the day after the shoot, this really touched my heart:
“Thinking back on yesterday, so many emotions come to surface. I was surrounded by a number of incredibly strong women who had just recently (5 years or less) suffered a rupture or had surgery before the aneurysm burst.
My ordeal was 13 years ago. I remember feeling what they were all feeling…fear that I was going to die at any moment, sadness that I couldn’t do what I used to do, devastated that my life as I knew it is changed forever, frustration that I was always in pain and extremely tired…and most of all, loneliness because I didn’t know anyone else who had survived and was going through it too. I tried my best yesterday to ease their minds and fears that life will get better and much of what they are experiencing will pass. It never goes away completely, but you adapt and your strength grows, and some of the sadness turns into joy because of little victories along the way.
Kamila wanted to do this project in order to raise awareness about the prevalence of the silent killers…brain aneurysms. But her project accomplished so much more. We are not alone, we will thrive and not just survive. Yesterday was amazing. I am excited to see our pictures and then hear more of the stories that were recorded…The immediate connection you feel with another survivor is indescribable.”
Thank you, Tracy!! Thank you, to all of the participants!
And here is Tracy, who survived on 1/23/2004. She now runs a support group for survivors at Stony Brook Hospital on Long Island. If you’re a survivor and would like to join, here is the Facebook link to the group – Eastern Long Island Brain Aneurysm Support Group – the next meeting is Monday May 15th, and we will have a video chat for those who would like to join but cannot physically be there, so be sure to check out the Facebook page for more information!
This is Rylee, the youngest participant, and she came to us all the way from Pennsylvania. She suffered a brain aneurysm at the age of 10, in July of last year. Look at her now! She’s doing amazing and is determined to get back to cheerleading soon!
Here’s another brave survivor, Christine, also one of the members of the Long Island Support Group!
Melanie survived her brain aneurysm just about 2 years ago!
Nadine is another recent survivor, celebrating a year just in November. She was so healthy and never thought anything like this could happen to her. She says – “If you get frequent headaches, get checked. And if you don’t get any answers, keep pushing. Listen to your body.”
Risa survived a rupture in 2012, and it was a terrible ordeal. Some months later she needed surgery on another aneurysm – and while that was also a harrowing experience, it was far easier than surviving a rupture. Get screened!
Veronica still suffers from some short term memory loss and speech issues after her 2015 brain aneurysm rupture, but she has come a long way. She has a great support system and is active in raising awareness.
Caresse is about to celebrate her two year survival annie-versary! She overcame some anxiety to make it to NYC on this day, and I’m so glad she did. Look at how stunning she is!
Debbie survived her ordeal in 2009. Her symptoms included that familiar sudden headache, nausea and a seizure.
Gerdy experienced intense migraines and got an MRI scan. She found out she has an AVM (arteriovenous malformation) which is when some of the vessels in a certain area get tangled. This is often inoperable and Gerdy is bravely carrying on and thriving, knowing it’s possible that it might rupture someday. “I will continue living life to the fullest” – she’s an inspiration!
Rhonda had a brain aneurysm rupture in 2014. She’s very active in raising awareness and she’s organizing the Bergen County Battles Brain Aneurysms Walk which I will be participating in on June 24th!
Patty is another superwoman who survived an aneurysm rupture in 2014 and is using her recovery to raise awareness. Here’s her story – Paramus Daily Voice – Aneurysm Survivor Here to Help
Nancy was suffering from double vision and balance issues and she got a scan that, just a little over a year ago, revealed she had a 1cm aneurysm and immediate surgery was recommended. She had a procedure called pipeline embolization accompanied by coils to stop up the aneurysm. After her surgery, she “stayed in bed for a month with the worst headache you can imagine accompanied by double vision.” Her recovery is going well although she still deals with some fallout from the surgery, but she is a warrior. She says – “I am here to bring attention to aneurysm awareness. We must be the voice of those who lost their lives, leaving families and friends behind…I put my feet on the ground every morning for those who cannot.”
Last but most certainly not least, meet Terese, who had an aneurysm rupture caused by an AVM, while pregnant. Both she and her daughter survived.
It was just so awesome to spend the day with these women, these brave warriors.
Huge thanks go out to Sharon Becker, Aziza Walker and Julie Waldkoetter, for happily donating their time and talents to make everyone feel and look amazing! Thank you to Michelle from M Wild’s Studio for making us feel so welcome and giving me a great rate on studio rental! Thank you to the very talented and awesome Taylor Barker who took video testimonials which will be shared soon! Thank you to Amy from Modern Rebel for her tips on how to get this thing going. And last but not least thank you to Lauren and Kris for helping me with all the little details like keeping everyone organized, getting mimosa ingredients and making sure everything runs smoothly!
This will be an ongoing project, and I’m hoping that I will be able to travel to other locations around the country to photograph survivors. If you would like to participate in the next shoot, please email me at firstname.lastname@example.org, follow the Facebook group at Brain Aneurysm Survivors Photo Project Facebook Page and the Instagram page here.