Skip to main content

Tag: 2024

Being Positioned Featured on Blue Sky Podcast

Written by Christina Menkemeller on .

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.

Morgan

Written by Christina Menkemeller on .

VON HIPPEL-LINDAU SYNDROME

Destination: Miami

Travel Year: 2024

My Story

In moments my entire world had changed. During my 20-week prenatal visit, my OBGYN admitted me to the hospital and sent me in for a Brain MRI because my symptoms were way past normal pregnancy symptoms. After the MRIs and a bunch of tests were completed, I was informed I had a large tumor on my brainstem, with cysts all down my spinal cord, in my kidneys and pancreas. They diagnosed me with a rare genetic disease called Von Hippel-Lindau disease (VHL).

My family and I had never heard of it before and were completely in shock. My doctors informed me that pregnancy hormones intensify this disease which is why my symptoms had gotten as bad as they did. After my Brain surgery to remove the tumor, we were relieved that both my baby and I had made it successfully through surgery. But, I had a number of complications that kept me in ICU for four long months. My eyes were crossed, I was having throat issues that were causing breathing problems and a lot of numbness in several places. A little less than a week later I caught pneumonia, and my lungs gave up and wouldn’t oxygenate.

“I was placed on ECMO, which is a type of life support that did the work for my lungs by oxygenating my blood. I also had a tracheostomy done and was connected to a ventilator. While on ECMO, our baby, Catie, passed away unexpectedly and for unknown reasons. I had to have a c-section the next morning. We were all completely devastated.”

After relearning how to walk and 4 long months in the hospital, I was released. My life has been turned upside down and there’s nothing I can do to control or change it. It’s hard to accept that I’ll never be the same person again. Scans, testing, and surgery will always control my life. But I always try to remind myself that it’s not what should stress me today. So, for today I will enjoy being with my husband, family, and friends.
Getting selected for a Being Positioned journey has been a huge blessing in my life. When I heard about this program and their mission, I was blown away by it. Thinking of the future has become a very scary rabbit hole, but going on this trip has given me something to look forward to. My diagnosis has made me realize how short life is and how I never want to take anything for granted. With constant appointments and medical bills, I feel like VHL has taken over everything. I want us to still be able to have fun and enjoy life. This trip is giving us the ability to live again and not have to think or worry for a bit about our reality. It’s an escape, and I know we will enjoy and cherish every moment of it.

My Health

Daily Challenges

  • Vision issues (double vision + eye shaking)
  • Vertigo
  • Larynx spasms
  • Coughing fits

Ongoing Health Issues

  • Breathing problems
  • Sleep apnea (damage from surgery)
  • Nerve pain from spinal cyst

Major Procedures

  • Brain surgery
  • C-section
  • ECMO cannulation (twice)
  • Tracheostomy

    Total Surgeries: 5

    Making Travel Plans

    After a devastating year marked by unimaginable trauma and loss following her diagnosis, Morgan made a brave decision—she applied for a Being Positioned journey, hoping for a moment of peace amidst the overwhelming stress of her new reality. She and her husband desperately needed a reprieve, and our team felt privileged to create a romantic, relaxing escape for them.

    From the start, Morgan had one non-negotiable: her journey had to include a beach! With so many stunning options across the U.S., we set out to find the perfect blend of serene beauty and the artsy, cultural vibe Morgan longed for. The Miami/Fort Lauderdale area stood out with its vibrant art scene and miles of breathtaking beaches, making it the ideal destination.

    We wanted to make sure the trip was as rejuvenating as it was memorable, so we planned a romantic rooftop dinner, a couples massage, and of course, plenty of beach time. Morgan also couldn’t wait to dive into Miami’s art scene, with visits to iconic spots like Wynwood Walls and the Historic Art Deco District. And what better way to complete their escape than with a scenic boat trip, soaking in the ocean views?

    One year to the day after her diagnosis, Morgan sent us a message that brought our team to tears: “A year ago today, I was lying in a hospital bed. Today I’m lying on a beach chair. Thank you!” Moments like these remind us of the incredible impact of these journeys—transforming heartbreak into hope.

    Each person diagnosed with Von Hippel-Lindau Syndrome 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.

    Learn More

    Continue reading

    Denise

    Written by Christina Menkemeller on .

    Neurofibromatosis Type 2

    Destination: New York City

    Travel Year: 2024

    In Loving Memory

    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.

    My Story

    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

      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.

      Learn More

      Continue reading

      Crystal

      Written by Garrett Nantz on .

      VON HIPPEL-LINDAU SYNDROME

      Destination: New York City

      Travel Year: 2024

      My Story

      My name is Crystal. I am a 44-year-old elementary teacher, currently in my 22nd year of teaching. I have Von-Hippel-Lindau (or VHL). It is a rare genetic disease and I lack a tumor suppressor gene that most people have. This leads me to have lesions in many areas of my body. For me it has been my brain, spinal cord, eyes, kidneys, pancreas, and lungs. Usually VHL is inherited, but there are some spontaneous cases. I personally inherited VHL from my mother, who inherited it from her father.

      I had my first VHL related surgery at age 20- which ruined my plans for a semester abroad in Costa Rica. It turned my undergrad degree into a 5-year endeavor. It has made me cancel flights and many travel plans. It has interfered with my time with my students quite a few times. As of today, I have had 10 brain surgeries, 1 kidney cancer surgery, 2 spinal cord surgeries, and 1 eye surgery. I have to take pancreatic enzymes in order to digest my food properly, and most recently I have become an insulin dependent diabetic. VHL also took my mother from me. She was only 67.

      “Despite all these trials, I still find myself valuing humor and positivity. Having issues like these makes things harder, but I try to make the choice every day to smile and have a good day. What is happening to me isn’t my choice, but what kind of person I am IS my choice.”

      Being Positioned is sending me to NYC this summer and I am so excited! My health concerns have not disappeared, but beginning to plan this adventure has been wonderful.I have spent most of my life not allowing myself to dream of much because my plans are usually ruined. However, aspiring for activities that I never allowed myself to even think of before has been amazing! I am so looking forward to staying in a nice hotel, Broadway plays, museum visits, and so much more! They have made every day a bit more exciting, as this trip is always on my mind!

      My Health

      Daily Challenges

      • Anxiety
      • Frequent scans + appointments while working full time
      • Fatigue from medication
      • Speech articulation

      Ongoing Health Issues

      • Require pancreatic enzymes to digest food properly
      • Difficulty regulating blood sugar
      • Balance problems
      • Nerve pain and/or numbness in certain areas from multiple surgeries

      Major Procedures

      • 10 brain surgeries
      • Kidney cancer
      • 2 spinal cord surgeries
      • Eye surgery
      • Currently on the 1st ever FDA approved targeted therapy for VHL

        Total Surgeries: 14

        Making Travel Plans

        When Crystal first applied for her Being Positioned journey, it was clear she was someone special. We spoke with her medical team and were amazed by the outpouring of love and admiration they had for her. Nurses eagerly took turns on the phone, each wanting to tell our Selection Committee just how deserving she was of this opportunity. After an incredible recovery from her 10th brain surgery, it was clear Crystal needed to be celebrated—and what better way than with the trip of a lifetime!

        Even though Crystal lives in Rochester, NY, she had her heart set on visiting New York City for her journey. She shared her excitement about seeing a live TV show taping and experiencing a Broadway show, both long-standing dreams on her bucket list.

        A huge fan of Harry Potter, Friends, and great food, NYC was the perfect destination to bring her passions to life. When it came to transportation, Crystal surprised us by suggesting a train ride instead of flying. She was new to train travel, and we loved the idea—it added an extra layer of adventure and allowed her to enjoy the scenic views and a relaxing start to her trip. Crystal’s wish list for NYC was extensive, including iconic landmarks and a stop at the Harry Potter Store, but at the very top was attending a live taping of The Tonight Show. We reached out to NBC, and they generously provided VIP tickets for Crystal and her partner Eric! With her itinerary set and a major dream about to come true, Crystal and Eric were ready to embark on the adventure of a lifetime.

        “EVERY SINGLE day of my life is filled with coordinating and going to appointments, making sure I have tests at the appropriate intervals, dealing with results of those tests, being symptomatic because of something VHL related, or recovering from a surgery or procedure. Planning my journey finally allowed me to focus on something fun instead. Of course, I couldn’t ignore the things I previously mentioned, but I was able to have my journey to think about as well.”

        Travel Docs

        Being Positioned created a 7-day itinerary for Crystal to eat, explore, and sightsee in beautiful New York City.

        • Recipient_2024_Crystal_Destination_NYC_Checklist3

        • Recipient_2024_Crystal_Destination_NYC_Checklist1

        • Recipient_2024_Crystal_Destination_NYC_Checklist2

        Destination New York City

        My trip to NYC included so many amazing things! On top of seeing the sites and all of the delicious food, we were also able to take in a Broadway play and a taping of The Tonight Show with Jimmy Fallon! We also visited the 9/11 Memorial and paid our respects, went to The Friends Experience, had a couple’s massage, and saw the city from the Top of the Rock and the Empire State Building. We rode the train to and from NYC, and this is a mode of transportation that I highly recommend. Being Positioned planned and organized all aspects of this trip perfectly! All we had to do is wake up in our fabulous hotel and refer to our day’s plan on an app. From there, we just had to follow the plans and click on the maps or attached tickets if necessary.

        Completed Activities

        Empire State Building • Top of Rock Observatory • The Tonight Show Taping • Broadway Show • Boat Tour • The Friends Experience • 9/11 Museum • The Metropolitan Museum

        “Not having to figure out what to do every minute of every day was wonderful. That in itself was a vacation! Also, not having the stressor of how to pay for all these things took such a load off my mind. Being chronically ill, finances in all their forms are a constant worry, and I would never be able to pull off a trip like this myself.”

        Within 48 hours of returning home from my journey, the scheduled appointments and scans started up again. However, I am going to them with a less anxious mindset. My young and healthy self-loved to travel, and I have been so worried constantly about maintaining my own life that I forgot what traveling makes you feel like. It is nice to be reminded of how big and wonderful the world is, and how many cool things there are to see and experience.

        All our thanks go to Christina and Michaela for planning an experience that will always and forever be remembered fondly! My cup runneth over!

        Each person diagnosed with VHL 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.

        Learn More

        Continue reading