Today we’d like to introduce you to Christina Menkemeller.
Hi Christina, please kick things off for us with an introduction to yourself and your story.
In March 2016, I was diagnosed with a rare genetic disorder called Neurofibromatosis Type 2 (NF2), which causes benign brain tumors to develop on the hearing and balance nerves and on the spine. These tumors damage hearing, so I lost all my hearing in my left ear within seconds and have some loss in my right ear. Doctors estimate that by the age of 40, I’ll be completely deaf. Unfortunately, this condition has no cure and is managed with chemotherapy, surgery, and radiation.
At the time of my diagnosis, I was finishing my master’s degree in social work to become a therapist, planning my wedding, and prepping to move from Texas to Florida. I was devastated. What was supposed to be the happiest time of my life had suddenly become a horrible medical crisis.
Shortly after moving to Florida, I felt so depressed. The chaos of the past few months had ended, and I was in a new city with no friends and no prospect of a job. One day, I was sitting in traffic listening to a Christian radio station and heard the phrase ‘Being Positioned.’ Essentially what that means is when your life is falling apart or you feel stuck, that’s when you’re being positioned to do something greater. I resonated so much with that idea, and it became a mantra for us as we battled my first year with brain tumors.
Fast forward a year later: After completing 9-months of chemotherapy, my tumors were stable, so my doctors decided to give me a break. Spending the first year of our marriage navigating my medical situation was rough, but it also taught us that life is short and unpredictable. We didn’t know how long I would be able to stay off treatment, but we knew we couldn’t waste it. So, we quit our jobs and traveled the world for 14-months.
We spent our first month abroad exploring Dubai and South Africa, then ate our way across Europe and ended in Japan and Thailand. The entire experience was beyond anything we ever thought we’d get to do and shifted everything for me. Simple things like trying new foods and laughing at our travel mishaps restored my confidence. Over time I focused less on my condition and more on exploration. Escaping our circumstances interrupted my feelings of hopelessness and helped me to feel like myself again.
While traveling, I debated about giving up my dream of becoming a therapist. Given my progressive hearing loss, it no longer felt like the right path, but after working towards that for 6 years, it was hard to let it go. Before leaving on our first trip, I started a blog called Being Positioned, so I could document our travels and share my medical journey. As I connected with people living with NF2 all over the world, I began to realize the power of traveling as a tool for coping with a serious illness.
Over time, the idea of Being Positioned – the nonprofit, was born. We’re sending adults living with critical, life-altering rare genetic disorders on an all-expenses-paid journey within the United States. Our hope is that each journey will serve as a turning point for our recipients and create an opportunity to improve their mental and emotional well-being.
By offering individuals the chance to help plan their journey, explore new places, and take a break from their medical appointments, we hope to shift the way they view their disorder.
Alright, so let’s dig a little deeper into the story – has it been an easy path overall, and if not, what were the challenges you’ve had to overcome?
The biggest obstacle was honestly myself. Creating a nonprofit, especially one for a population that most people don’t realize exists, felt so overwhelming. How would I get people to believe in my vision? Or even care about what we’re trying to accomplish? Thankfully, God continuously put the right people in my path to help me get this organization started. And each person who agreed to help me was another vote of confidence that this is going to work.
Another thing I struggle with is balancing my own reality as a patient, while also trying to manage our organization. It’s tough showing up mentally when I’m in the middle of my own medical mess. Even now, my MRI is tomorrow, and I have the treatment and a hearing test next week. I’ve been having these tests every 3-months for 6 years now, but it doesn’t get easier or less scary.
Whenever we get bad news after a test (like tumor growth or hearing loss), I always get knocked down mentally and emotionally, making it tough for me to feel motivated to accomplish anything. And fatigue from treatment typically makes the quality of my work drop for a few days, so I plan my tasks around those weeks. This tension fuels my belief in the importance of our organization, but it’s an ongoing struggle to reach a healthy balance for myself.
And of course, one of our biggest struggles has been COVID-19. We launched in November 2019, accepted our first applicant in February 2020, and then the pandemic hit-making travel for vulnerable populations was extremely risky. We also had to cancel our first fundraising event, which was scheduled for May 2020, and instead did a small online one. We’ve unfortunately been on hold since then, but we’re hoping to finally host our first journey this year.
As you know, we’re big fans of you and your work. For our readers who might not be as familiar what can you tell them about what you do?
One of the biggest things that set us apart from other nonprofits is the population we serve. There are limited resources available for people like me, especially ones focused on improving mental health. We want people to have a break and go on a nice vacation, but it’s so much more than that. Living with an incurable, progressive condition is extremely challenging and creates a financial and emotional strain on the individual and their family. As a result, people diagnosed with rare genetic disorders are at a high risk of developing depression.
When I was first diagnosed with NF2, my self-worth and confidence dropped dramatically. I lost my sense of purpose and felt like my life was a constant burden. To some extent, I still struggle with those feelings but traveling always gives me the mental reset I need. And not just big trips – even little getaways make a big difference in how I approach my condition.
It’s strange to admit that as much as we wish I didn’t have NF2, we’re so grateful for the adventures and people it’s brought into our lives. Our hope is that through our branding and the way we approach journeys, our recipients will start to view their disorder through that same lens. Gratitude is a powerful coping mechanism and stepping out of our environment is a great way to initiate that perspective shift.
What matters most to you?
I’ve had the privilege of getting to know people diagnosed with rare genetic disorders from all over the world, and a common theme of hopelessness persists among our population. It’s easy to get buried beneath your circumstances and forget who you were before your diagnosis. Fifty percent of people get diagnosed as adults, which means you might spend a good portion of your life blissfully unaware that you have a horrible condition waiting to surface.
That’s how it was in my case; it was so unexpected. I felt like I was losing my entire future in an instant. It wasn’t until I heard the phrase Being Positioned that I started to appreciate my diagnosis as a turning point in my life – not the end.
Even before traveling the world or starting the nonprofit, I knew good things would come from my condition. Through all the MRIs and negative reports, I held onto the hope that there was purpose in my suffering. That somehow, it would be worth it. Ultimately, what matters most to me is that our recipients realize that they’re Being Positioned, too. We want the journey to open their eyes to the purpose and possibility waiting for them.
To help them realize who they can become not just beyond their condition, but through it.
Contact Info:
- Email: hello@beingpositioned.org
- Website: www.beingpositioned.org
- Instagram: https://www.instagram.com/beingpositioned/
- Facebook: https://www.facebook.com/beingpositioned
- Youtube: https://www.youtube.com/channel/UCWnNuhgzpV0NCLOdqbMqCeQ
Image Credits
Gabriela Castro
