MaryMartha Ford’s birthday is Aug. 26, but that’s not when she celebrates it.
Instead, she marks the occasion on Aug. 16. That’s the date she underwent the brain surgery that changed her life. It became a second birthday — a re-birthday.
“That day is the day that I was given a new opportunity, another chance at life,” she says. “I like to celebrate it. I celebrate it with a cupcake and a little champagne.”
MaryMartha began experiencing significant neurological symptoms in the spring of 2011. She had a constant ringing in her ear, along with frequent, severe headaches and facial spasms.
Doctors diagnosed MaryMartha with Chiari malformation, a rare condition that occurs when brain tissue extends into the spinal canal. It can cause significant, life-altering symptoms like the ones MaryMartha experienced.
After nonsurgical treatments didn’t resolve her symptoms, MaryMartha researched surgical options. She learned of Chiari malformation decompression surgery, which can help relieve symptoms. And she eventually found Robert Friedlander, MD, chair of Neurological Surgery at UPMC.
Dr. Friedlander is a Chiari decompression surgery expert who evaluates and treats Chiari patients nationwide.
On Aug. 16, 2011, Dr. Friedlander performed the surgery that changed MaryMartha’s life. Over a decade later, she still experiences occasional symptoms, but she’s enjoying life.
“I’m very, very fortunate,” she says. “I recognize that’s not everyone’s story. I do not take that for granted. I also still realize that I have a chronic condition. It’s in remission.
“At any point, anything can happen, anything can flare. But I don’t live in fear, and I don’t allow that to keep me from living my life.”
‘It Was Very Hard’
A western Pennsylvania native, MaryMartha is the younger sister of award-winning actor and singer Billy Porter. She fell in love with the arts herself during high school and worked in the entertainment industry for a decade after college.
MaryMartha returned to western Pennsylvania in October 2010 to take a job as a resident coordinator at a local college. In spring 2011, she was watching television in her campus apartment when she suddenly began to experience unusual symptoms.
“While I was sitting there, I had this spasm where my jaw closed up, I couldn’t swallow, and I had this ringing in my ear,” she says. “And as quickly as the spasm happened, then it stopped.”
Worried she was experiencing a stroke or another acute situation, MaryMartha rushed to the mirror to check on herself. She didn’t see any noticeable problems.
But the facial spasms and ringing in her ear returned. She also began to get constant headaches.
MaryMartha visited her primary care provider, and the facial spasm happened again during the appointment. So, her PCP referred her for an MRI appointment. That led to her diagnosis of Chiari malformation.
Chiari malformation is a rare, often congenital, condition. It occurs when the lower part of the cerebellum — the lower portion of the brain — extends into the spinal canal. This blocks the normal flow of cerebrospinal fluid in the brain and puts pressure on the spinal cord.
Many people with Chiari malformation don’t have symptoms. Others experience symptoms like severe headaches, dizziness, vision problems, ringing in the ears, cognitive and/or psychiatric symptoms, and more.
After MaryMartha’s diagnosis, doctors started her on medication to relieve her symptoms.
But the medication didn’t have an impact.
She was experiencing chronic headaches — “like brain freeze,” she says — especially when she moved her head. The headaches made it hard for her to sleep. She still was experiencing ringing in her ears, as well as pain in her legs.
“It was hard. It was very hard,” she says. “I would still show up and go to work. No one knew what was happening. I was hurting. Oh, I was hurting.”
MaryMartha even kept the seriousness of her situation from her family and friends, not wanting them to worry.
As she continued to struggle with symptoms, MaryMartha did her own research about her condition.
“It’s very difficult when you aren’t really sure about what’s happening to your body,” she says. “The doctors that you’re seeing, they’re not quite specialists in the diagnoses that you have. So being sick and trying to advocate for yourself, that meant that I had to learn a lot. So, I did.”
During her research, she learned about decompression surgery for Chiari malformation. And as she searched for an expert in the procedure, she found UPMC and Dr. Friedlander. Dr. Friedlander has performed Chiari procedures for over two decades and is an expert in the procedure.
Hoping to land an appointment but not sure she would, MaryMartha called UPMC’s scheduling office. To her surprise, she landed an appointment within the same week.
‘It Has to Be Done. There Is No Other Way’
Dr. Friedlander and MaryMartha met for the first time in May 2011.
“I remember, obviously, she was scared,” Dr. Friedlander says. “She wasn’t quite sure what was going on. She’d seen a number of doctors beforehand that really didn’t understand Chiari very well, because (Chiari is) a very subspecialized kind of medical problem.”
Dr. Friedlander evaluated MaryMartha and viewed her previous scans. He told her she was a candidate for surgery based on the problems that Chiari was causing.
“Patients can come with symptoms of Chiari as well as have other problems,” Dr. Friedlander says. “And what I tell them is, if we believe that Chiari is causing part of your symptoms, the Chiari should be taken care of.”
MaryMartha, who had been struggling with her symptoms for two months, was thrilled to hear she was a candidate for surgery.
“All I heard was, ‘Ding!’ and his mouth was just moving,” she says.
She did have one question for Dr. Friedlander — how the surgery would affect her hair. She’d grown out her hair for several years at that point.
“I said, ‘Have you ever done this on a Black woman with dreadlocks? Because I need to know what we’re going to do with my hair,'” MaryMartha remembers. “And he smiled.”
Chiari malformation surgery requires an incision in the back of the head. Before her procedure, MaryMartha cut her own hair and put it into two pigtails so that the incision wouldn’t affect it.
MaryMartha spent two months before the procedure getting her affairs in order. That included telling her family and friends about her condition and her surgery — she had kept her struggles largely private.
“When I called my friends and I told them what was happening, I just was very matter-of-fact about it,” she says. “I told them, ‘I need your energy to match my energy about this.’
“I’m giving them facts: ‘I will live, this is what it is, and it has to be done. There is no other way. It has to be done. I am in a lot of pain, and I would like to not be in this much pain.’”
‘Her Life Was Really Transformed’
A typical Chiari malformation decompression surgery lasts around two hours. The surgery involves creating more space for the brain to reduce the stress on the spinal cord.
Although surgery doesn’t always eliminate all of the Chiari malformation symptoms, it can provide relief for people who are struggling.
When MaryMartha woke up from her surgery, she began testing to see if she could experience any of her previous symptoms.
“I started moving my face to see if it would twitch,” she says. “I started doing things that would normally make the sensation go off. And it didn’t. And I didn’t have brain freeze, and I was like, ‘Oh, my God.'”
“I remember that she felt so much better (after surgery),” Dr. Friedlander says. “Her life was really transformed by feeling better at that point.”
MaryMartha didn’t have to go through physical or speech therapy after surgery. She took six weeks off from work, and her brother Billy came to Pittsburgh from New York to take care of her.
Although she felt better physically, MaryMartha did experience some mental health effects after her surgery. She says she went through some periods of depression as she adjusted after surgery.
“There was a moment where I had to come to this agreement in my body that I’m different,” she says. “I don’t look like what I’ve gone through. When you see me, there’s nothing really outwardly to show someone that I have a brain disorder, and I wanted to continue to live my life as if nothing was wrong.
“But I had to take a moment and say, ‘Things are different for me now. Now what do I do? How do I continue to live and manage all of this?’”
‘Everyone, Together, Was Taking Care of Me’
For the first decade after her surgery, MaryMartha had no major symptoms. She would get occasional headaches, but they weren’t as severe as they were before.
In the meantime, she got a master’s degree in higher education and moved to New York. She became an academic adviser at New York University and Columbia University. She also developed an award-winning game called The Ultimate Clap Back.
In 2022, MaryMartha started having neurological symptoms again, including vision problems and severe headaches.
“When the wind would blow, it felt like someone was tasing me,” she says. “It was excruciating pain.”
Medication wasn’t helping, so MaryMartha reached out to Dr. Friedlander and came to UPMC. An MRI showed she had pseudotumor cerebri — a condition caused when cerebrospinal fluid builds up in the brain, causing pressure.
MaryMartha had a lumbar puncture to relieve the pressure, but it looked like she might need a second brain surgery.
Instead, Dr. Friedlander ended up recommending a holistic approach. He referred her to Robert Kaniecki, MD, the founder and director of the UPMC Headache Center. Dr. Kaniecki prescribed her medication for her symptoms. MaryMartha also began working with a nutritionist and personal trainer.
The combination of medicine and lifestyle changes helped relieve MaryMartha’s symptoms, so she didn’t need surgery.
“I haven’t had a headache in several months now,” she says. “I feel great. I no longer have to take the medication. I feel wonderful. I still go to the gym Monday, Wednesday, Friday, and I’m eating better and just living life.”
MaryMartha says she’s thankful to Dr. Friedlander and the team at UPMC for taking care of her.
“Everyone, together, was taking care of me,” she says. “And that is so important. And the anxiety that I had — once I came back home to Pittsburgh, that was gone.”
‘I Want to Live’
The year before MaryMartha was diagnosed with Chiari malformation, she wanted to take a trip to Six Flags. She ended up delaying her trip because of work but told herself she would go the next summer.
Then came her Chiari diagnosis and her brain surgery.
“And now I can’t ride roller coasters,” she says.
“If you’re going to do something, do it. Because you don’t know how quickly your life will change.”
That was one of several lessons MaryMartha took out of her experience with Chiari and pseudotumor cerebri. She also learned the importance of advocating for her own health, as well as how to be vulnerable.
MaryMartha is still living in New York City and is now working in the arts again. She’s working on a memoir, Sickadis, and a podcast. She is also a public speaker who advocates for mental health awareness, wellness, and other topics.
Over a decade since her Chiari symptoms first emerged, MaryMartha is healthy and enjoying life. She says she doesn’t let her illnesses define her — she lives life to the fullest.
“There are some days that I don’t feel the best, but I still get up,” she says. “Then, there are days that my body says, ‘Girl, sit down.’ Then, I sit down.
“It ebbs and flows, but with this time that I have left, I want to live. And that’s the choice that I’ve made for myself: I want to live.”