We are so excited to partner with Maddi as a guest writer. Her experience and insights are so meaningful for our community. Madeline Niebanck graduated from Georgetown University in Washington, DC, in May of 2017. A few days later she went to the hospital for a planned surgery to treat an Arteriovenous Malformation (AVM). An untreated AVM can result in a serious stroke. During a pre-surgery procedure, though, that AVM gave way and Maddi suffered a stroke.
While going through recovery, Madeline wrote her first book, Fashion Fwd: How Today’s Culture Shapes Tomorrow’s Fashion. Readers loved the book, but especially connected with Maddi’s story of stroke recovery. That response inspired her to write her second book, Fast Fwd: The Fully Recovered Mindset. Here is Maddi’s story:
Hi, my name is Maddi and I am a hemorrhagic stroke survivor, author, content creator, disability advocate, and I work in fashion. After suffering a massive hemorrhagic stroke one week after my college graduation in 2017, I lost everything. Waking up from an emergency craniotomy to discover I was completely paralyzed on one side was incredibly difficult. I had to undergo extensive physical, occupational, cognitive, and speech therapy to recuperate basic skills like walking, using my arm, smiling, and speaking- all things that I had once taken for granted.
You're probably thinking: wow, how did she have a stroke at 22? She is too young to have had a stroke! And you wouldn't be wrong. While I felt completely blindsided by this traumatic event, in retrospect it wasn't completely unexpected.
Since I was 7 years old, I suffered intense, debilitating migraines with aura that affected my ability to see, and oftentimes arrived accompanied by a severe, throbbing headache. I tried every migraine medication under the sun and none of them worked. My only potential solution was to quarantine in a dark room and lay down until the pain subsided and I threw up so much that there was nothing at all left in my system. It sucked.
When I was 15 years old I suffered a migraine that lasted 24 days. I ended up going to the ER multiple times. My neurologist advised that this was not normal and I should get it checked out. He ordered me an MRI, and the scan revealed that I had an arteriovenous malformation in the right occipital lobe of my brain.
An arteriovenous malformation is essentially a tangle of abnormal blood vessels that don’t have capillaries. While it couldn't be confirmed that this was what was causing my frequent and intense migraines, what was clear was that it certainly was not a good thing. Arteriovenous malformations, or AVM for short, are congenital. Most people born with them don't know until it ruptures or they have a stroke and die. Some people go their entire lives without ever knowing that they had one. But since I was fortunate enough to discover that I had this malformation, the question then became what I should do about it. The doctors informed me that with each year of life I stood an increased chance of the AVM bleeding. I basically stood a 50% chance of my AVM rupturing at some point in my lifetime, and if it did, there was a 10% chance of death. I consulted with many neurosurgeons, but ultimately did not like the idea of living with a ticking time bomb in my brain, and so I decided that I would undergo brain surgery after I graduated college.
Apart from the seasonal, debilitating migraines I suffered, my AVM didn’t really impact my life. I went into the hospital the day before my surgery for a pre-operative procedure to embolize the abnormal blood vessels. I was to then spend the night in the ICU before going into surgery. Well, that preoperative procedure caused a blood clot in my brain which burst, causing me to have a massive stroke in the hospital and be rushed into an emergency surgery.
Twelve hours and seven liters of blood transfusions later, I woke up to a harsh new reality. I was going to have to work really hard to regain the skills that I had previously taken for granted. I quickly had to face the fact that I had a long road ahead of me. And this journey has shown me the importance of mindset in recovery. It has also shown me that life is short. We should choose to focus on pursuits that are important to us. It is because of this realization that I ultimately found the courage to become an author and pursue my dreams. I share my experience to inspire and empower others to share their journeys. You never know who your story is going to help. Onward!
Learning to walk June 2017