Maddi Niebanck embodies the word resilience. She is the author of Passion for Fashion; leading the editorial portion of a new handbag line, Cara Benevenia; and is also writing a new book while simultaneously kick-starting a blog surrounding her experience with neuro rehab and stroke recovery. Yes, you read that correctly. Maddi is absolutely crushing it, and still recovering from a stroke. Usually, when we read about individuals who face obstacles in life, their autobiography or interview begins with the traumatic event that has inspired the cause or the change that they are advocating for. The death; the illness; the loss that then inspires the foundation, book, or movement. But why should we begin their stories in that way? These amazing human beings who are changing our world by no means allow their obstacles to define them, and Maddi Niebanck is a true testament to that. Against all odds, Maddi is persevering and adamantly refusing to allow her struggles to deter her from accomplishing her dreams. In fact, this experience has had the averse effect. It has propelled her forward, and opened her eyes to bigger dreams. Thank you, Maddi, for sharing your powerful road to recovery with me.
Maddi’s Journey: Barely a week after my graduation from Georgetown University in May 2017, my life as I knew it changed forever. I was so excited to begin this next chapter of my life. I had a job lined up in Boston that I was excited about, and three months to relax, travel, and catch up with friends before I made the move. There was just one little thing I had to get done beforehand: brain surgery. See, ever since I was a child I suffered from chronic migraines. I’ve been on medication to help with the pain for as long as I can remember. When I finally reached high school, a 24 day long migraine forced me to go to the emergency room and finally get an MRI done to figure out if something else was going on. It turned out that I had an arteriovenous malformation in the right occipital lobe of my brain (AVM for short). It was harmless for now but the doctors did tell me that with each year of life there was an increased chance that the AVM could bleed and I could have a massive stroke and possibly die. I didn’t like the odds of this ticking time bomb in my brain rupturing, and so I elected to get brain surgery after I graduated from college. The week after my college graduation, I checked into New York Presbyterian for my surgery. The doctors told me that if everything went well, I would need to rest for a month or two and be in perfect condition to go move to Boston and start my job at the end of the summer. Well, let’s just say that didn’t happen as planned. One of the pre-op procedures ended up causing a blood clot in my brain which burst, causing a massive brain hemorrhage and an emergency surgery. 7 hours and over 7 liters of blood transfusion later, I lay completely paralyzed on the left side of my body in a hospital bed in the ICU. Upon waking up from a coma few hours later, I had no idea what had happened and it was unclear if I would be able to recover from this. I spent a grueling 15 days in a bed in the ICU where I learned to just barely sit in a wheelchair for 10 minutes before I was transferred to inpatient at Kessler in West Orange, New Jersey. At inpatient rehab I learned how to walk with a cane and then was discharged to begin outpatient therapy. Fast forward two years, and I still am learning how to do all the things that I once took for granted, like walking and using my left arm. While going through rehabilitation, I decided to take the time to deep dive into a long-term interest of mine, fashion. I interviewed lots of people and wrote their stories in a book which was published in September 2018, Fashion Fwd: How Today’s Culture Shapes Tomorrow’s Fashion. I wrote about where I saw the fashion industry heading, but also wove in little anecdotes from my experience with stroke rehabilitation and how writing a book was a great form of cognitive therapy for me. The feedback that I got from that book was that people enjoyed the personal stories that I shared, and so I’ve just decided to write another book on my experience with neuro rehab, and interview doctors and other patients who have experienced similar challenges. In addition to working on this new book, I also have the goal of building a community around stroke and brain injury awareness and education. I hope to use my Instagram account end my blog (coming this week!) to educate others on the challenges of living post-stroke or brain injury and share strategies of living and hopefully inspire and empower others to find the courage to re-purpose their lives in the face of adversity. I feel so fortunate to have been able to receive such quality rehabilitation and have such amazing therapists who are fully invested in my recovery. But I know that there are so many people less fortunate who don’t have access to quality therapy programs or care. I know now that life is a gift and each day is a blessing, and I would like to work my hardest with the time I have been given to make a difference for others who have experienced brain injury.
Maddi: Obstacles are opportunities, and I think that this crazy obstacle of suffering a stroke may just be a blessing in disguise, a beautiful opportunity to re-purpose and make a positive impact in the lives of others.
Miss Independent: Who inspired you along the way?
Maddi: A friend I made in rehab, Duke, who despite suffering a complete spinal cord injury that has left him paralyzed for life, is the strongest most optimistic person I know. He is the reason I keep working hard for progress. Such an amazing friend who constantly inspires me and gives me strength.
Miss Independent: How do you respond to negativity (either your own thoughts or those of others)?
Maddi: I like to think that there is nothing I can’t do that others can, I just have to sometimes get creative with how I can do it. For example, prior to a recent three-week therapy stint in Alabama, my hand wasn’t functional at all. But after, I was wearing a wrist brace to help tying my shoes with two hands and using it to help in other activities. All this to say that I thought I couldn’t do it but with some slight modifications and lots of practice, I’m proving myself wrong.
Miss Independent: What initially inspired your “passion for fashion”?
Maddi: I would say that my interest in fashion dates back to childhood. In middle school, I self-published the first (and only) edition of my own fashion publication, Passion for Fashion. I interviewed classmates and took pictures of my younger sister modeling clothes that I thought girls our age would like. I wrote fashion advice columns under the pseudonym Carly Zen (not sure where that came from ha-ha). A good friend of mine from childhood studied fashion design in college and I’m working with her on the editorial portion of her handbag line (Cara Benevenia). We haven’t officially launched the blog yet but that is also coming soon. She has come up with some beautiful designs and I’m really excited to help from a marketing and editorial perspective.
Miss Independent: What’s your favorite quote?
Maddi: Pretty soon after my stroke, I was reconnecting with a friend and mentor, Greg Nance. Greg is an entrepreneur who started Moneythink, a financial literacy and money management nonprofit, from his UChicago dorm room back in 2009. I brought the club to Georgetown while I was a student there. Not only did Greg start Moneythink but he has since moved to Shanghaii to start a mentorship platform for students who want to attend university abroad, Dyad.com. Anyways, soon after my stroke I became a Dyad mentor and Greg and I were chatting when he told me something I’ve never forgotten. He said “Obstacles are opportunities”. That’s become my life motto. When I am frustrated or feel like giving up, I remind myself of this. Each day is a gift and every moment of every day presents us with a unique set of circumstances and choices and it’s up to us to make the most of it. Every morning that I wake up I say to myself “Today is a beautiful day to be alive,” and I really try to live in the present moment and work towards my goals. Because ultimately, its true. Today IS a beautiful day to be alive, and I owe it to myself and everyone I meet to give each moment my best shot.
Miss Independent: What’s your favorite book?
Maddi: Picture of Dorian Gray by Oscar Wilde.
Miss Independent: What is the best place you’ve traveled to?
Maddi: Low key Norway. It’s beautiful there with the fjords.
Miss Independent: What do you do to relax?
Maddi: Right now, working on writing my new book. It is relaxing for me to be able to channel my frustrations with daily living into a creative outlet like writing, especially with the goal of turning it into a broader movement of empowerment.
Miss Independent: Who’s your role model / inspirational figure?
Maddi: My family and friends, I’m lucky to have such a strong support system.
Miss Independent: Maddi, thank you for sharing your wisdom. Cannot wait to see all of the amazing things you achieve through building a community around the experience of stroke rehab and empowering others to optimize life.