Christina Menkemeller on Facing Adversity, Finding Purpose in Suffering, and Lifting the Lives of Others
Listen to the episode here or on your favorite podcast platform!
At a time in her life that should have been one of her happiest –just prior to her wedding –Christina Menkemeller developed frightening symptoms and was given a devastating diagnosis. In the wake of this news, Christina’s fiancé Cardin never wavered in his commitment and the newlywed couple decided to take a yearlong trip that would change the course of their lives. After facing the understandable “why me” moments, Christina was buoyed by her faith and a sense of gratitude and decided to launch a nonprofit –called Being Positioned –to help others with conditions like hers go on their own dream trips. She describes this organization as a sort of “Make-A-Wish for adults” and it’s already making a huge impact and helping her find purpose in her suffering.
Denise’s Journey is sponsored in loving memory of Gregory John Adami (62) and Thomas Joseph Adami(60). Gregory served as Tax Director for a major oil service company in Houston, Texas, and died in 2024 from heart failure. Thomas served as a captain in the South Bend Indiana fire department, where he served for 32 years. He died of cancer in 2024. Both brothers were involved in activities serving their fellow man and their communities. Their memory is served well by supporting Denise in this much-deserved Journey and in supporting the efforts of Being Positioned to provide similar opportunities to other individuals battling debilitating diseases.
If you would like to sponsor a journey in memory of a loved one, complete our contact form.
I had a normal life growing up and loved it. In college, I noticed my right ear was hearing things less. I graduated and was at my first job when I noticed that most of my hearing in my right ear was gone. I went to multiple doctors, but none could figure out what was wrong. When I returned from working as a missionary in Panama, I saw a doctor that scheduled my first brain MRI in 1995. That is when we discovered I had multiple brain tumors and was diagnosed with Neurofibromatosis Type 2.
I was living in northern CA and had a friend in southern CA studying to be a nurse. When I told her about my diagnosis, she said she had studied it in class and knew a doctor specializing in NF2. I thank God that I was connected to him to start treatment. My life revolves around NF2. At age 30 in 2000, I became deaf. Two years later I met my husband who was born deaf, and we have adopted 2 deaf boys. Through the years, I have had seven brain surgeries, gamma knife, and radiation to treat the tumors that keep growing. I also have had surgeries to remove tumors from my calf and knee.
“One doctor looked at my MRI and stated that I only had one more year to live (this was 29 years ago)…I am happy that I have gotten through each surgery even though some of the doctors said I wouldn’t make it. That I wouldn’t be able to walk. That I would be blind. But I am still here.”
I am deaf now and slowly dealing with more tumors. Headaches and dry eyes bother me every day. I can’t swim underwater and have lost some of my balance. Recently, I have had some vision loss and most likely will not be able to drive soon. I am thankful to Being Positioned for giving me a Journey so I can make some amazing memories with my husband while I can.
Being Positioned has given my husband and I something wonderful to dream about. I was told about this program through a friend and was nervous about signing up at first. It took a while for me to finally do something good regarding my disease. One surgery caused the whole right side of my body to be paralyzed. It took several months of therapy to move and walk again. The older I get; the more tumors grow. I am always thinking about one of my tumors doing damage that will change everything. After my most recent surgery, I decided to apply to Being Positioned and was thrilled to be chosen.
My Health
Daily Challenges
Deaf
Vision problems
Dry eyes + mouth
Headaches
Ongoing Health Issues
Balance issues (hard walking in straight line)
Brain fog
Numerous brain tumors
Shunt
Major Procedures
Seven brain surgeries
Gamma knife
Radiation
Two leg tumor removal surgeries
Total Surgeries: 9
Making Travel Plans
Denise was understandably nervous about applying for a Being Positioned journey after becoming deaf and enduring so many physical challenges due to NF2. But as our team began working with her to plan the trip, we knew that her initial hesitation would soon give way to excitement.
Our goal was to create an experience that would not only challenge and empower her but also help restore her confidence—reminding her of all she’s still capable of despite her condition.
Planning Denise’s journey was especially meaningful because both she and her husband, Ted, are deaf. This presented a unique challenge, as we needed to find a destination that offered inclusive, adaptive activities so they could fully enjoy everything together. After exploring various options, Denise and Ted chose New York City—a perfect blend of excitement, culture, and accessibility. They were especially eager to see a Broadway show and perhaps even make an appearance in the background of the TODAY Show!
This wasn’t just a trip—it was also a time for celebration. During their week in NYC, Denise celebrated her birthday, and the couple marked their 20th wedding anniversary! To make the occasion even more romantic, we planned a horse-drawn carriage ride through Central Park, a relaxing couples massage, and a delicious steak dinner on their final night.
Their journey wasn’t just about seeing the sights—it was a celebration of resilience, love, and new possibilities.
“Planning the journey with my husband gave us something to look forward to. I was excited and nervous about going. Nervous because the journey was one of my biggest trips. Going with my husband, who supported me, gave me a reason to go, but without Being Positioned we never would have gone. Every day on the trip created some of the best memories that we have.”
Travel Docs
Being Positioned created a 7-day itinerary for Denise to eat, explore, and sightsee in beautiful New York City.
The trip itself gave me confidence to continue to enjoy different things. I am finally seeing that I can do more than I allowed myself before the journey. I often walk and lose balance. Having my husband helping me though the crowds at Times Square let me enjoy seeing things without worrying. Several times I started to lose my balance on the busy sidewalk. I was blessed to have my husband holding my hand every day so I wouldn’t fall. Also, nice to hold hands with him.
We arrived at NYC on Saturday night. It was amazing to see all the lights and huge crowds of people outside. Sunday started with seeing the Statue of Liberty and Ellis Island. Then back to the hotel (using the subway for the first time) in Times Square to get ready to see the Broadway show “Wicked”. My husband and I are deaf and thankful that they have captioning devices for us. That show changed our whole point of view for the movie “Wizard of Oz.”
Monday was a lot of walking and seeing some of the history of NYC. Walking into Grand Central Station made me feel like I was in a movie! We also saw the Public Library, Rockefeller Center, Penn Station, and Madison Square Garden. The best thing to see was the Empire State Building (don’t forget seeing King Kong). The view from the 86 floor was amazing. After the view we decided to walk around Times Square at night. It looks like Las Vegas strip but 5X larger!
“Tuesday, we had to wake up early to be on the Today Show! I have never been on TV, so this crossed off a bucket list item. It was interesting to see how they showed the people standing outside (we got a few seconds). We met Hoda and Savannah and got pictures with them.”
Completed Activities
Statue of Liberty and Ellis Island • Wicked • Empire State Building • Today Show Taping • The Highline • 9/11 Museum • Couple’s Massage • Central Park Carriage Ride
Wednesday was the most memorable day. In the morning, we went to the 9/11 Memorial. Talk about memories coming back. It took us 3.5 hours to walk around the memorial because it was so stunning to see. After seeing the memorial, we walked over to the One World Observatory. It is now the tallest building in the US. The most fun part was riding in the elevator to the top. Up on the 112 floor, we ate lunch with the amazing view. Next, we walked over to SoHo to enjoy some more quiet time. Make sure you eat at Joe’s Pizza there; it was worth it. From SoHo we walked to NYU and the George Washington Arch.
Thursday was our last full day in NYC. It was so much fun to celebrate our 20-year anniversary and my 55th birthday (not always easy to do with NF2). We rode a horse drawn carriage around Central Park. We were able to use Live Transcribe on our phones to listen to the driver talk about the different movies that were made there. Then we had a couples massage (that was perfect timing after the miles we walked every day). My husband gave me a red rose when the massages were finished and is displayed in our bedroom. Going out for my birthday dinner was my favorite part of the day. We have never dressed up to go to a nice restaurant for dinner. Their food was delicious! I loved getting the chocolate cake dessert for my birthday. It’s rare to feel so accepted after becoming deaf and having so many surgeries.
“Friday, we packed for our night flight home. We had the afternoon to do our final walk around Times Square to Central Park. Walking toward the Park we passed a large red HOPE sign. The sign was perfect for the two of us as we prepared to go back to real life. I will be having my MRI and neurosurgeon appointment in three weeks. Walking around NYC with my husband supporting me gave me the hope I needed to continue dealing with NF2. ”
We are now home with our two sons and can’t thank Being Positioned enough for all the memories this trip has given us.
Each person diagnosed with NF2 experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.
To learn more about Rare Genetic Disorders, click below.
“My name is Rhianon, I’m 45 and living in Seattle. I come from a small family in California that had NF2. I was diagnosed when I was around 4 or 5 (my right eye started turning), then everyone else was diagnosed soon after. “Everyone” being my mother, uncle, aunt, and grandmother (who died before I was born). My great-grandmother had married a man with NF2. As for my dad? I never knew him, mom left him when I was 2. I heard he was abusive and denied I was his.
I received my first hearing aid in first grade (but I was too much of a rebel to wear it). Except for my right eye being closed (ever since I could remember), I was in pretty good shape. But looking so different, in a small town, still wasn’t easy. People have stared at me my whole life, especially kids. I hated it. I thought I was pretty cool, but I never really felt like I “fit in”. That’s still relevant today, a misfit, but a proud one! Took me several decades to realize I’m awesome, it doesn’t matter if everyone can’t see that.
I spent the last 20 years living in Seattle… AND LOVING IT! So much to do in a city, and so much diversity. Worked as a web designer, got into photography, learned ASL, met friends from around the world… but my favorite part? My team of doctors aren’t far away, and they know NF2 very well. My mom used to have to drive long distances for that kind of attention.
“I had to quit working 10 years ago, and now live on disability (with HUD housing). Headaches and brain fatigue made focusing on a project for long hours impossible. My vision is getting worse, my hearing is gone (but I have a cochlear implant), my balance is poor, my spine has tumors, and so does my brain….but I ain’t done living yet! I’m a big believer in appreciating everything you can still do, no use of crying over what you lost. Enjoy what’s left while you can.”
This disease is beyond scary, and I do my best to not allow myself to crawl into that black hole of fear. I have to remind myself that I’m not alone, daily. I got a tattoo on my wrist to remind myself of that. ‘Someone’s looking out for you.’ (No, I’m not always successful at fighting the fear, but I have a great group of friends to help on those days as well.)”
My Health
Daily Challenges
Fully deaf; cochlear implant on left side (still don’t understand speech)
Right eye closed + no depth perception or control of eye
Severe dry eyes
Severe brain fatigue
Ongoing Health Issues
Slight facial nerve damage on right side
Deteriorating vision in left eye
Major Procedures
3 brain surgeries + shunt and cochlear implant placed
Optic nerve tumor removed
Spinal tumors + loss of balance
Proton therapy for brain tumor + skin cancer removal twice (caused by proton therapy)
Total Surgeries: 8
Making Travel Plans
“I don’t know if my ‘top dream’ fits your criteria, but my gut keeps telling me to try…”
Rhianon’s application letter immediately captured our hearts. A few months earlier, she had shockingly discovered who her biological dad was and that she had two half-sisters and three nieces. And it turns out they live in the area she grew up in – the Central Coast of California. Rhianon moved to Seattle 20 years ago and had always longed to make a trip home again, but it was too expensive. With a deep desire to meet her family (after being alone since the age of 17) and an eagerness to revisit her old stomping grounds, she took a chance and applied for a journey.
Rhianon is deaf because of NF2, but thanks to Facetime’s new caption feature, she had already spoken to her family multiple times. After texting with her sister and niece daily, she said it’s clear they’re not “afraid of me being deaf or having NF2”. Obviously, there was an emotional risk for Rhianon going on this trip, but we all believed the payoff would be more than worth it!
When it came to planning her itinerary, we took a slightly hands-off approach compared to our typical process. Rhianon and her family worked together to create a list of fun activities and set their schedule for the week. We wanted to do everything in our power to create a memorable and safe experience, but to respect the unique nature of the situation and let them sort out the details themselves.
Seeing her family and hometown were Rhianon’s top priorities for the trip, but she also wanted to spend a little time at the end relaxing on the beach with her partner. She also shared that she’s never stayed in a fancy hotel or ordered room service. We knew that a little dose of luxury was the perfect way to end her vacation, and what better place than Santa Barbara!
“Half of my excitement for this trip is to finally get to meet the family I never knew I had. The other half is just seeing “home” again, and sharing it with my long-time partner. Very excited to see my old “stomping grounds”, and what has changed. I know I have. I’m no longer the awkward girl that was ashamed of who they were. I’ve grown a lot since then, and want to prove it to myself. My positive attitude will outshine my physical flaws.”
Travel Docs
Being Positioned created a 6-day itinerary for Rhianon to eat, explore, and sightsee in sunny California.
First off, I have so much gratitude for Being Positioned, and how much they helped me to have such an amazing adventure. Finding out you have family is pretty amazing. But being able to fly to CA to meet them and see “home” again (after 20 years) was over the top!
Not only did we meet, but they welcomed me with open arms. Physical challenges didn’t matter, they accommodated and helped however they could. Was a good reminder that you really aren’t “alone” in the world, nor need to be isolated.
“It was a very full schedule, seeing Hearst Castle, beaches, small towns, enjoying my favorite restaurant again, lounging in a hot tub… but totally worth it. Having family along for most of it made it even better. The BBQ and playing Mini Golf with them were probably my favorite moments.”
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Completed Activities
Meeting Biological Family for the First Time • Hearst Castle • Mini Golf • Eating Lots of Mexican Food + BBQ • San Luis Obispo + Pismo Beach • Santa Barbara • Massages • Beach Day
What was my favorite moment?? The fact that the adventure isn’t over yet! I’m still in touch with them, and we are already making plans to hang out again. :)”
Getting to do all this stuff, without having to worry about money or doctor visits was definitely a highlight. Being free to enjoy the moment with no worries, is pretty priceless.
Normally I’m shy in groups, but that wasn’t the case here. There was no time for that! So I brought some mics to help my phone captions and did my best to stay in the conversations in the car or while eating. That helped my confidence a lot! I looked at getting to know them as a challenge, a good one. 🙂
Dad’s friend was with us a few times and knew ASL. That helped bridge the gap as well while she interpreted and helped me tease him a little lol.
Each person diagnosed with NF2 experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.
To learn more about Rare Genetic Disorders, click below.
I was diagnosed in 1992, when I was 25. A biological relative contacted me and informed me of a hereditary genetic disorder that I may have inherited. That was the first time I had ever heard of Neurofibromatosis Type 2 aka NF2. I was not raised with my biological family. I am a third generation NF2’er. It started with my grandfather, then my mother, and both my siblings. I was tested and VOILA! The rest is history.
Fast Forward to 2022. I am 55 years old, I have had 4 brain surgeries. I am deaf. I am legally blind. My mobility is impaired. I have numerous spine tumors. I have had my face reconstructed, my eyelids and my vocal cords “corrected” with implants. Also, random skin tumors at random places all over my body.
The emotional part is exhausting. Constantly adapting. Repeatedly adjusting to a new normal. By definition, NF2 is a progressive disorder. So, it is going to get worse. Or it wont. Or it will. That is an enormous burden to carry. Always another test, another scan, always hoping for “stable” test results, but waiting for the other shoe to drop.
“The heirloom of NF2 is bilateral Acoustic Neuroma / Vestibular Schwannoma tumors, which almost always result in deafness. I remember a time when the thought of someday being deaf seemed like the end of the world, and I just could not wrap my brain around it. In the big picture, and the long list, of losses that you can suffer with NF2, losing your hearing seems minor now.”
The finances are no joke either. All the specialized equipment, both for communication and mobility: not cheap! All the dry eye maintenance supplies, none of that is covered by insurance either.
The pandemic has been horrible. The whole mask issue is a nightmare to most late deafened people. Forget lip reading. I don’t even know you are talking to me unless I can see your lips. Since 2020, I have been in one store. Only one. I have been to numerous doctors appointments though! Being “high risk” is not a joke. Isolation. It’s hard. It has changed me a lot.
My Health
Daily Challenges
Fully deaf + legally blind
Dizziness, headaches
Swallowing problems
Severe dry eyes
Ongoing Health Issues
Atrophy, impaired mobility, loss of balance
Numerous spine tumors
Skin tumors
Major Procedures
4 brain surgeries
Eyelids + vocal cords “corrected” with implants
Facial reconstruction surgery + throat surgery
Total Surgeries: 8
Making Travel Plans
When KC applied for a Being Positioned journey, she was unsure if she could fully participate since she is deaf, legally blind, and has numerous mobility issues due to her NF2. Her first request was that we provide a local travel companion to guide and support her. With those challenges in mind, we focused on a fun-filled destination that was mobility friendly without compromising her safety. KC mentioned that she used to love going on road trips but hasn’t been on one in years because of her health. During our conversations, we discovered she is a big fan of fall foliage. Because we knew KC has a birthday in October, it became clear we needed to send her and the love of her life, George, on an unforgettable trip near her special day.
Since there is nothing more magical than a road trip through the Smoky Mountains during peak leaf season, we suggested Tennessee. Once KC read about all the exciting activities found in the Blue Ridge Parkway, we all agreed that Tennessee was the perfect place to visit.
As we began planning her trip, we could tell KC’s confidence grew when she sent us a surprising email.
“I don’t want a host [local travel companion] anymore. If we have your guidance and know in advance where we are going….no problem. We can do this – it will be the trip of a lifetime!”
It was so special for our team to witness KC’s long forgotten sense of adventure awaken even during the planning of her trip.
“Never in a million years did I really think I’d be chosen for a Being Positioned journey, but here we are, and life is good! I think about my journey all the time! We’re going on a road trip through the Blue Ridge Parkway and ending in Gatlinburg/Pigeon Forge.”
Travel Docs
Being Positioned created a 6-day itinerary for KC to eat, explore, and sightsee in beautiful Tennessee.
My journey has already given me a huge blast of self-esteem, and I haven’t even gone anywhere yet! Also, I’m just happy and excited and looking sooo forward to my journey. I can’t remember the last time I was looking forward to something. I’m hoping my journey gives me a new blast of energy. I feel burned out and jaded. I have medical tests coming up. Sigh. Normally, I would be dwelling on those tests and what the results may show. But this time I have the nice distraction of my Being Positioned journey!
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Completed Activities
Blue Ridge Parkway Road Trip • Virginia Safari Park • Mabry Mill • Ober Aerial Tramway • Jayell Ranch: Zip Lining + Horseback Riding • Couple’s Massage + Facial • Parrot Mountain Garden of Eden • Moonshine Mountain Coaster
“In my past, road trips were my thing. Just one more thing I figured I would never do again. But I was wrong. With the proper support, planning, and embracing the adaptations available to me, nothing is impossible! Everything about my Journey, was stepping out of my comfort zone. And I’m so glad I did! I feel recharged and ready to face whatever the future brings. Empowered, Confident, Independent, ABLE.”
Last night my neighbor’s had their annual Halloween bash/potluck. George was sick in bed, but I already said I was bringing chili. So, I went without him and it was fine! I never do stuff like that anymore. Ever. Before I went, George kept asking me: ‘Are you sure you want to go alone?’ I told him yes! I am embracing my newly found self-confidence. You can blame Christina! Haha.
Some of my peers couldn’t understand why anyone would donate to a “Journey” when we need a cure. Valid concern. However, what good would a cure be to the body, if the soul is broken? Being Positioned is a worthy cause. I am excited for the next BP’er. Who will it be? Where will they go? I hope they find their adventure. Never give up. Ride or Die!”
Each person diagnosed with NF2 experiences different symptoms throughout their lifetime. Some cases are considered relatively minor, while others are more severe. Despite the variation among cases – every story is hard and full of loss.
To learn more about Rare Genetic Disorders, click below.
