Get to know Christina Menkemeller and Being Positioned

By Christina Menkemeller and Dina El Achi, MS, CGC

As a genetic counselor working in the pediatric space, it is all too easy for me to focus on the needs of patients and their families within the confines of childhood and adolescence. However, as I have had the opportunity to walk alongside families over extended periods of time, it’s evident that transitioning to adulthood comes with its own unique challenges, a struggle with identity, and an unspoken burden that families have as they look to the future. In light of that, I had the pleasure of speaking with Christina Menkemeller, the founder of Being Positioned, a nonprofit organization that seeks to empower and improve the lives of adults living with rare and life-altering genetic disorders by helping them discover purpose through traveling, building community, and creating memorable experiences. She shared her personal journey and the motivation behind her work!

I’d love to start with your story: Tell us about your journey to being diagnosed with NF2.

I was living in Fort Worth at the time and finishing my master’s degree in social work to become a therapist. Pretty abruptly, one day, I lost all my hearing in my left ear. I had very little indication ahead of time that anything was going to happen. I was misdiagnosed a couple times – nobody really knew what was going on, and nobody thought to order an MRI. But, a month later, they discovered that I have Neurofibromatosis Type 2 (NF2).

That was a really shocking diagnosis […] the timing was horrible; I was 3 months from getting married, 2 months from finishing graduate school, and about to move from Texas to Florida. So, that meant I started with all these doctors in Dallas and had to find a whole new clinical team in Florida. It was so overwhelming. On top of that, my career as a therapist radically shifted since it’s a completely hearing-dependent career.

What got you through such a difficult and frightening time in your life?

It was 100% my faith, and my now-husband. It was so cruel that it happened at the time that I was graduating and getting married, but that was also a beautiful season, and provided an incredible distraction for me. So, I think that cushioned the blow, because I couldn’t be that miserable while marrying the man of my dreams, right? I couldn’t be that miserable while being surrounded by so many of our friends and family! We even did our vows in sign language. We didn’t know if I was going to lose my hearing before then since I lost it so fast in my left ear. That was terrifying for us, and I wanted to make sure that I could fully participate in our vows, so we secretly came up with that plan. Having those incredible moments threaded throughout my diagnosis story, for one, showed us God’s kindness, but also, gave us hope in a very dark season.

Can you tell us about what sparked your interest in travel?

It was a perfect storm of a few different things at once, which created a scenario for both [me and my husband] to have courage and decide that we were … going to quit our jobs and travel the world for 14 months. Our adventures abroad changed everything for me and brought me back to life. It helped me see that I’m not just a patient. I can still be a normal human. I can explore the world, be brave, and do things out of my comfort zone! It gave us a much-needed escape and showed us the power of getting out of your environment. It helps you remember who you are beyond your circumstances.

What was your motivation in starting “Being Positioned”?

I had a blog called “Being Positioned” while we traveled, and a girl with NF2 from the Philippines reached out saying: “I love traveling and watching what you guys are doing. But I lost all my hearing, and I don’t think I can do that anymore.” And I thought, I get that, and it is very difficult to travel as a different human than you used to be, but I think you can still do it. You just need some support.

The next day, I had the idea to start the nonprofit. Especially realizing that for most people in this situation, their finances are all spoken for because of their medical needs. And they have very little bandwidth to go anywhere or plan anything. It’s hard to travel, [especially] when you throw complex disabilities [on top]. I realized that this was a gift that I got to experience and wanted to be able to do that for other people too. We want our recipients to know they still have so much purpose. They can still live a good life. It might not be easy. But it’s not going to be wasted. The hope is to help people realize their potential and that who they were before their diagnosis isn’t completely lost. In fact, in some ways their condition can help them become a better person.

Starting the nonprofit felt very overwhelming. We’re all so fixated on every life choice we make having to be the right one; there’s no room for error. But once I was diagnosed with NF2, my plan got thrown out the window. I had nothing left. I was terrified of something bad happening to me, but also, the bad thing already happened, so what do I have to lose? That realization plus my newfound courage from traveling, empowered me to take the risk and start Being Positioned.

Even my willingness to do something like this proved to me how much traveling had transformed me. I never would’ve been brave enough to start this organization before our stint abroad. Plus, my social work background helped me notice that I became a different person while traveling. I felt so much lighter, happier, and all around freer. Studies even show the impact of traveling on your mental health. Anyone may benefit from traveling, but people diagnosed with rare genetic disorders, particularly in adulthood, desperately need something to look forward to again. They need hope, excitement, and fun – and we want to be the ones to provide that for them.

“Anyone may benefit from traveling, but people diagnosed with rare genetic disorders, particularly in adulthood, desperately need something to look forward to again. They need hope, excitement, and fun – and we want to be the ones to provide that for them.”

Now that it has been established for a while, what would you say is the mission of “Being Positioned”?

Our mission is to help people discover their purpose through traveling, building community, and creating memorable experiences. The name Being Positioned comes from the idea that if you’re feeling stuck or your life is falling apart – then you’re Being Positioned for something greater. We want our recipients to see that their diagnosis represents an important turning point in their life, but that good things can still come from it… like getting to go on the trip of a lifetime!

One thing we’ve noticed is that a lot of our recipients struggle with the fear that something might happen medically to prevent them from going on their journey. That fear is valid, but we encourage them to focus on letting planning their journey be the main goal. Don’t worry about getting to go on the trip. Let’s just enjoy planning it together! We book and pay for everything, but they create a wish list and are the ones leading the process. We encourage them to tell people about their journey and fully lean into every aspect of planning it. But to take the pressure off if you get to go on the trip, because the reality of medical emergencies interrupting it is a real stress for people.

It's been a beautiful thing to watch too – just to let them enjoy every moment as much as [they] can, regardless of what might happen. Teaching them to do that is something they can practice when they get home. We encourage them to figure out what that looks like now in your daily life? How can you still channel that same simple enjoyment? How can you find little things to look forward to? We are working on developing the “once you get home” process more, but our goal is to see how we can help them continue this practice long-term.

What do you wish the Genetic Counseling Community knew about supporting families going through the diagnostic odyssey?

I have a lot of things I can probably say about that. There are so many incredible organizations that are focused on finding a cure, and that is obviously very needed. But I think we sometimes get lost in fighting for a cure, and I often think, “what if we don’t find a cure in my lifetime? What am I doing in the meantime?”. While I am waiting for a cure, how do I still be a human? How do I still have a healthy marriage? How do I still be a good friend? How do I still be a good parent?  That part gets lost. It’s so clinical. But I am not just a patient. I am not just these brain tumors and hearing loss.

Challenging people to find ways to foster that they are still able to live despite having to go through this is so important. How can you find a purpose? And sometimes that is helping find a cure or lead a marathon to raise money and taking ownership of these experiences. But from the clinician’s standpoint, remember that they are human first and that all the medical stuff doesn’t matter in that moment. Sometimes, they just need a hug and to be reminded of their worth. They need that first and the rest can get figured out later as they can handle it more.

“We want to give people something that lets them say “because I have this condition, I got to do this really cool thing”. It’s given them a good thing that came from something horrible. There is power in that. ”

Countless adults are currently in the midst of a potentially life-altering diagnostic journey. Do you have any encouraging words you would like to share?

A couple of weeks after my diagnosis, a friend texted me and said, “you need to write down all the God-winks – all the good things that you see God doing, everything that makes you think ‘alright, I see you Christina’”. That day I wrote down 32 God winks that I had seen happen since my diagnosis. By the end of the process, I was suddenly feeling grateful for my suffering. It really showed me the power of gratitude. Even if you are not a Christian, writing down one good thing you can be grateful for every single day. I have done that for years now. Sometimes I’m not feeling very grateful, but the grass is green, and that’s a pretty color, and that’s all I can do. But getting into the habit of letting your brain learn to look for the good, and realize that there is always good, even if we don’t always see it. You’re breathing today – that’s good. You can pet your dog – that’s good. It has really helped lift my heart in some of those moments. I let myself grieve and feel the full breadth of how horrible something is, but I don’t sit there very long. Anyone going through a chronic illness, only you can pull yourself out of that hole. Taking that ownership – only I can decide to be grateful today. This is also part of the heart behind “Being Positioned”. We want to give people something that lets them say “because I have this condition, I got to do this really cool thing”. It’s given them a good thing that came from something horrible. There is power in that.

For more information about Being Positioned and how you can be involved in their work, visit their website at www.beingpositioned.org.