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Author: Christina Menkemeller

Being Positioned Featured on Blue Sky Podcast

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

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.


    “Florida was a dream! We got to enjoy the beautiful East coast beaches, the art district in Miami, different museums in Fort Lauderdale and an amazing massage at the NOW spa. Not to mention the amazing food!”

    Travel Docs


    Being Positioned created a 7-day itinerary for Morgan to eat, explore, and sightsee in the beautiful Miami/Fort Lauderdale area.

    • Recipient_2024_Morgan_Destination_Miami_Checklist3

    • Recipient_2024_Morgan_Destination_Miami_Checklist3

    • Recipient_2024_Morgan_Destination_Miami_Checklist1

    • Recipient_2024_Morgan_Destination_Miami_Checklist2

    Destination Miami + Fort Lauderdale


    Our meals were so wonderful, but I think our favorite place we got to eat at was Olivia’s Restaurant and Rooftop. It was a beautiful roof top view during sunset with delicious Italian food. My favorite art museum we went to was by far Wynwood Walls. It was an incredible display of multiple graffiti artists, each with multiple pieces on display. Each artist was so different in style which made the whole gallery such a great experience. We loved it. My favorite moments were sitting on the beach relaxing listening to the waves crashing onto the shore. It was truly my definition of peace. It was so wonderful to get away from the reality of our everyday lives and not have to worry about all the doctor’s appointments.

    Completed Activities


    Beach • Riverboat Dinner Cruise • Wynwood Walls • NSU Art Museum • South Beach • Las Olas BLVD • Rooftop Dinner • Massages

    “We got to really leave all our worries home and just focused on being present in the moment and we loved every minute of it. Being Positioned gave us the biggest gift we could have asked for. They not only gave us peace, but it gave me hope. ”


    This adventure we were lucky enough to get to experience showed me that just because of my diagnosis, we don’t have to stop living and enjoying life. We are both incredibly grateful for Being Positioned and what they have done for us. Thanks to them we were able to not only leave behind our stress but also gave us the opportunity to create new memories that seemed like a dream come true.

    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

    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.

    • Tom Joseph Adami

    • Gregory John Adami

    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

      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.

      • Recipient_2024_Denise_Destination_NewYork_Checklist4

      • Recipient_2024_Denise_Destination_NewYork_Checklist3

      • Recipient_2024_Denise_Destination_NewYork_Checklist1

      • Recipient_2024_Denise_Destination_NewYork_Checklist2

      Destination 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.

      Learn More

      Continue reading

      Cereal de Mayo Drink Recipes

      What better way to start the day than with a Lucky Charms Latte? That’s right – two of your favorite things (coffee + cereal) in one delicious package! We’re starting Cereal de Mayo at 9 am EST on May 16th and couldn’t resist picking the latte below for our first cereal treat! Today we’re sharing lots of delicious non-alcoholic and alcoholic cereal recipes. And who knows…maybe by the end of this we’ll all start adding cereal to our daily coffee! 😉

      NON-ALCOHOLIC DRINK RECIPES:

      Lucky Charms Latte (You can find the recipe here.)

      Cereal Milk Lattes (You can find the recipe here.)

      Cold Brew Cereal Milk Iced Coffee (You can find the recipe here.)

      Lucky Charms Cereal Milk Matcha Latte (You can find the recipe here.)

      Crunch Berries Breakfast Shake (You can find the recipe here.)

      Cereal Milk Hot Chocolate (You can find the recipe here.)

      Cinnamon Toast Crunch Cereal Milkshake (You can find the recipe here.)

      Cap’n Crunch Milkshake (You can find the recipe here.)

      Fruity Pebbles Shake (You can find the recipe here.)

      Cereal Tea (You can find the recipe here.)

      DRINK RECIPES CONTAINING ALCOHOL:

      Fruit Loops White Russian (You can find the recipe here.)

      French Toast White Russian (You can find the recipe here.)

      Fizzy Trix Vodka (You can find the recipe here.)

      Lucky Charms Cereal Milk Punch (You can find the recipe here.)

      Honey Nut Cheerios Milk Punch (You can find the recipe here.)

      Cocoa Puffs White Russian (You can find the recipe here.)

      Cereal Milk Martini (You’ll find the recipe here.)

      Boozy Reese’s Puffs Cereal Milkshake (You can find the recipe here.)

      Now that we’ve given you plenty of cereal recipes and craft ideas, you’re officially ready for our Cereal de Mayo celebration! Check out the full schedule for the day here and don’t miss our Cereal de Mayo happy hour on Facebook and Instagram live at 5 pm EST on May 16th. To top off our sugar coma, we’re teaching everyone how to make French Toast White Russians. So pick your recipes, grab your cereal, and get ready to change the lives of adults living with rare genetic disorders by eating cereal!

      Join us for Cereal de Mayo on May 16th by sharing your cereal selfie on social media, tagging 5 friends, and donating $5 to Being Positioned! (To learn more about the event, click here.) This is a small, simple way that you can support us after having to cancel our physical fundraiser this year. Follow us on Facebook and Instagram to keep up with all of our #cerealdemayo adventures!

      Cereal de Mayo Crafts

      Cereal de Mayo is just a few days away! Aside from consuming way too much cereal, we’re also spending May 16th creating mini piñatas out of cereal boxes! (If you have no idea what I’m talking about – click here to learn about our exciting fundraiser!) Today we’re sharing a list of amazing cereal box crafts the whole family will enjoy!

      A Cereal Box Guitar (Click here to view the post.)

      Cereal Box Piñata (Click here to view the post.)

      Monogram letters from cereal boxes! (Click here to view the post.)

      DIY Cereal Box Gift Tags (Click here to view the post.)

      DIY Cereal Box Drawer Dividers (Click here to view the post.)

      Cereal Box Aquarium (Click here to view the post.)

      Cereal Box Succulent Planters (Click here to view the post.)

      DIY: Mini Pocket Notebook from a Cereal Box (Click here to view the post.)

      Postcards (Click here to view the post.)

      Cereal Box Drawer Dividers (Click here to view the post.)

      Awesome Cereal Box Elephant Craft (Click here to view the post.)

      Cereal Box Bookmarks (Click here to view the post.)

      Cereal Box Puzzle (Click here to view the post.)

      Cereal Box Night Light (Click here to view the post.)

      I’m not sure if I’m talented enough to make that amazing night light, but if you do this one – please send me a picture! Who knew you could turn cereal boxes into so many incredible items?!

      Join us for Cereal de Mayo on May 16th by sharing your cereal selfie on social media, tagging 5 friends, and donating $5 to Being Positioned! (To learn more about the event, click here.) This is a small, simple way that you can support us after having to cancel our physical fundraiser this year. Follow us on Facebook and Instagram to keep up with all of our #cerealdemayo adventures!

      Cereal de Mayo Recipes

      Cereal de Mayo is almost here! (If you have no idea what I’m talking about – click here to learn about our unique virtual fundraiser!) To help you prep for May 16th, we’re sharing some delicious cereal recipes. Since we’ll be consuming quite a bit more sugar than normal that day, we’re making Ranch Cornflake Crusted Baked Chicken for lunch in our house to help break up the sweetness overload (if there is such a thing 😉 ). Throughout the day we’ll be sharing live videos and stories of us making different recipes, doing cereal crafts, and even playing cereal bingo! So, make sure to follow our Being Positioned Facebook and Instagram pages to be part of all the fun!

      Ranch Cornflake Crusted Baked Chicken (You can find the recipe here.)

      Fruity Pebbles Breakfast Bread (You can find the recipe here.)

      Overnight Fruit Loop Sweet Rolls {Made with Cereal Milk} (You can find the recipe here.)

      Cereal Macarons (You can find the recipe here.)

      Golden Grahams S’mores Bars (You can find the recipe here).

      Cinnamon Toast Crunch French Toast Sticks (You can find the recipe here.)

      Crunch Berry Muffins (You can find the recipe here.)

      Raisin Bran Muffins (You can find the recipe here.)

      Fruity Pebbles Mini Cheesecake (You can find the recipe here.)

      Cornflake Biscuits (You can find the recipe here.)

      Fruit Loop Waffles (You can find the recipe here.)

      Grape Nuts Bread (You can find the recipe here.)

      Two Ingredient Cereal Yogurt Bark (You can find the recipe here.)

      Savory Hot Buttered Cheerios (You can find the recipe here.)

      Cap’n Crunch Peanut Butter Cookie Stackers (You can find the recipe here.)

      Cereal Milk Ice Cream (You can find the recipe here.)

      Breakfast Cereal Cupcakes (You can find the recipe here.)

      Reese’s Puffs Peanut Butter Balls (You can find the recipe here.)

      Milk and Cereal Breakfast Popsicles (You can find the recipe here.)

      Rice Krispie Treat Pancakes with Browned Butter Syrup (You can find the recipe here.)

      Cheerios Coated Grilled Cheese Sandwiches (You can find the recipe here.)

      Peanut Butter Crunch Black Bean Brownies (You can find the recipe here.)

      Corn Pop Treats (You can find the recipe here.)

      Chocolate Mousse Parfaits with Reese’s Puffs & Chocolate Covered Pretzels (You can find the recipe here.)

      Alright, if you’re not excited about Cereal de Mayo yet after seeing alllllll of those delicious recipes, then you have a lot more will power than I do haha! I’ll be honest…I had to hide our cereals at the top of our pantry, but I’ve still caught Cardin sneaking a few bowls. We can’t wait to spend May 16th making crazy cereal recipes with you (virtually 😉 )! Which recipe are you going to make? Let us know in the comments below!

      Join us for Cereal de Mayo on May 16th by sharing your cereal selfie on social media, tagging 5 friends, and donating $5 to Being Positioned! (To learn more about the event, click here.) This is a small, simple way that you can support us after having to cancel our physical fundraiser this year. Follow us on Facebook and Instagram to keep up with all of our #cerealdemayo adventures!

      Look for the Good

      Wow – who would have ever thought this would be our world right now. I think it’s safe to say our entire country is in a collective state of shock as we watch our lives crumble.

      Sitting here trying to grasp our new reality, I feel like I’m back four years ago in tears on my kitchen floor trying to make sense of what my diagnosis might mean for my life.

      Of all the bad things to happen, finding out that I’m living with two brain tumors never crossed my mind. And losing my hearing certainly hadn’t made my list of worries because honestly, I didn’t even know that could happen to people.

      My life was barely getting started. And then in one day, I lost it all. (Or at least I thought I did).

      Except for this time – somehow – we all got hit with the same curveball. We’re all in this together.

      The other day I was on the phone with someone discussing our plans for Being Positioned and what this would mean for the nonprofit’s future. Given the current state of our world, everything we had planned is either on hold, canceled, or being heavily altered. After hearing my response he paused and said, “leave it to you to find something good even in this Christina”.

      Later that day I started to think about his words and how accurate he is – I can find the good in pretty much everything. Even in my worst moments, I quickly reframe my situation and seek out the positive.

      But this is NOT something I’ve always done.

      Before my diagnosis, I wasn’t nearly as intentional about finding purpose in my suffering. And it certainly wasn’t my automatic response to pain.

      (Before I go any further, I want to pause and say that I do not skip over my suffering. I’m not naïve or in denial when problems occur. It’s extremely important to let yourself feel sad, angry, or any other emotions that you’re experiencing right now. I’m simply sharing how my husband and I learned to thrive in a seemingly impossible situation.)

      Looking back over the last four years I feel like Cardin and I are surprisingly prepared for the pandemic. 

      Between my diagnosis, traveling for a year, and starting a nonprofit – it’s almost as if we’ve been training for this very problem.

      We learned how to respond to bad news with faith instead of fear. We learned how to be creative with our circumstances and react with resilience. And thanks to backpacking around the world – we’re used to losing track of what day it is and being together 24/7 without much other human interaction.

      But the biggest thing we learned from my condition is to look for the good.

      A few days after we found out that I have NF2, a friend called and told me to look for the “God winks” in my life. I hadn’t heard that phrase before, but quickly attached to it and started writing down a list of every good thing that was helping make my situation bearable. I saved the document on my computer and knew that it would be a helpful reminder as I learned to navigate my new life. 

      Reading through my old list of 37 “God Winks” earlier today, I couldn’t help but smile. I was buried in fear. I couldn’t see past my pain.

      But creating that list planted a small seed in my heart and kept me grounded in the truth that all hope was not lost. Good things were still happening despite the bad.

      The thing is – that truth remains accurate even during the pandemic. Good is still happening alongside the bad. And it’s a lot easier to thrive during a situation like this if you can learn to seek out the good.

      Notice that I’m using the word “thrive” not “survive”. Anyone can survive a hard situation, but few decide to thrive because of it.

      Even for us, life has taken an unfortunate turn. We are one of many nonprofits who had to cancel a fundraiser. All of our journeys are paused indefinitely and we’re faced with the reality that it could be a very long time before it’s safe enough for our vulnerable recipient population to travel.

      Everything has come to a screeching halt. It’s extraordinarily disappointing and defeating to devote so much energy to create something and have it stop before it even had a chance to start.

      No one is immune to the pain of our world right now.

      BUT – I’m choosing to still look for the good. In fact, I’m looking for the good a lot more than I’m looking for the bad. I know our problems are still there. I feel the pain. But I won’t let the bad steal any more from me than it has to.

      I’m facing this with a heart of gratitude that far exceeds my disappointment. And I want you to remember that you have that option too.

      Hope is only lost when you decide to let it go.

      Despite the readily available list of bad things we’re all facing, I challenge you to not just look for the positive – look for the purpose. Look for small ways every day that you can find meaning in this time at home. Try new things, connect with old friends virtually, do things that you otherwise would never have the time to do. Discover creative opportunities to help others and remember that one of your biggest sources of purpose right now is to do your part and stay home.

      And at the very least, use this time to practice looking for the good in every situation.

      Subscribe below to receive posts directly to your email! And if you want to keep up with us daily, follow us on Instagram at beingpositioned and christinamenkemeller or on Facebook @beingpositioned!

      A Beautiful Distraction

      I took this photo the day after we launched Being Positioned – the nonprofit.

      Exactly one day after the greatest accomplishment of my life became a reality.

      We had planned on celebrating, but through a series of unfortunate events, including an incorrect test result, I ended up having to spend it in yet another infusion chair.

      Launching a business at the same time as dealing with my condition has been unexpectedly difficult for me.

      Thankfully the side effects from my treatment are minimal, but the fatigue it causes has made it hard for me to keep up. Repeatedly working until 10 pm isn’t great for someone in my position, and my late nights quickly took a toll on my body.

      The more tired I am, the worse my hearing gets. That’s what caused the false decline on my hearing test – and that’s why I ended up having treatment the day after we launched.

      On it’s own, an extra infusion isn’t a big deal. But, the emotional roller coaster of getting bad news and having to redo my appointments all while trying to launch Being Positioned was extremely defeating.

      I did what I could to show up every day, but honestly, it was some of the hardest weeks of my life. I was so proud of everything we were accomplishing but incredibly frustrated that I couldn’t just be normal for a bit and get through everything without the drain of being a patient.

      It’s hard to ignore that heavy feeling of disappointment each time NF2 taints another life event.

      My condition has stolen a lot from us in the last four years. But at the same time – it’s added just as much. After all, if it weren’t for this disorder, I never would have created Being Positioned.

      I feel like I’m stuck in a strange reality. One minute I’m on the phone with our trademark lawyer, the next I’m calling the cancer center. Bouncing back and forth between running a business and being a patient – like I’m living two completely separate lives.

      But Being Positioned has been a beautiful distraction for me.

      It’s given me something to hope for during an otherwise hopeless situation. And having my health temporarily decline while launching reminded us why we’re doing this and how much people living with these conditions need a break. 

      I know how it feels to be desperate for an escape.

      When starting a business or taking any big risk, it’s easy to feel like you’re making a terrible mistake. I couldn’t help, but think I was crazy for doing this and doubt whether people would care about what we’re trying to do.

      The weeks leading up to our launch, I started feeling more insecure about the process and worried that people wouldn’t think this is a worthy cause.

      So, maybe I needed the reminder.

      Maybe the reason I had to go through all of those extra tests and appointments at such an important time was that I needed to remember that I’m not doing this for other people’s opinions.

      I’m doing this to help adults suffering the same reality that I am.

      I’m doing this for everyone fighting to live a normal life despite the battle going on inside their bodies. I’m doing this for everyone feeling like there is no chance of escaping their reality, even if just for a week. I’m doing this for everyone living the same double life and needing something to hope for again.

      And despite my fears about sharing Being Positioned with the world – you did an incredible job of proving me wrong. 

      Thank you to everyone who wrote such meaningful messages about Cardin and me when you shared our video. We read every single post, and your words of love and encouragement were so healing for us both. And thank you to everyone who donated this last month. Your support and trust mean the world to us.

      Don’t forget to subscribe to our newsletter here, so we can let you know when new blogs are posted!

      Want to keep up with us daily? Follow us on Instagram at @beingpositioned, @christinamenkemeller, and on Facebook at Being Positioned.

      Letting Go of Being a Burden

      Do you ever feel like a burden?

      Like no matter how hard you try—you always seem to need a little extra help.

      Even asking for a small accommodation might feel like you’re asking for far too much far too often.

      Recently I was interviewed for a podcast called “Unapologetically Me.” 

      The host, Boomer Perrault, explores different topics pertaining to mental health. He interviews guests going through a specific situation, whether it’s a chronic illness, depression, or an addiction, and encourages them to reflect on how their experiences have affected their mental health. And he ends each episode with the individual explaining their top tip for dealing with their particular circumstances.

      When I accepted the offer to appear on the show, my first thought was: most people with my condition aren’t going to benefit from this at all.

      Because they won’t be able to hear it.

      Shortly after the episode went live, I posted it on my social media accounts. I was excited about sharing it but feared that people who have NF2 would get frustrated with the lack of ability to listen to it.

      Within a few hours, I received multiple requests for a transcript of the episode so that individuals who are deaf or hard of hearing could experience it as well.

      First off, I’m a bit of a podcasting newbie, so I had no idea that transcribing it was even an option…it makes perfect sense; it just never occurred to me until people started asking for it.

      My next dilemma: asking Boomer to get the episode transcribed. I had heard that there are services out there that will do it for you, but still worried that he would reject the idea based on the time or money needed to accomplish it. 

      I didn’t want it to be too much of an inconvenience for him.

      I didn’t want to be too much of an inconvenience for him.

      Even before my diagnosis, I always felt a little guilty asking others to do things for me. I tried to be as independent as possible, and if I ever needed help, I would try to even the playing field and do something for them in return.

      This has progressively become more of an obstacle for me as I deal with my own hearing issues and needing a little extra assistance.

      I’d rather pretend like I can hear everything and laugh along with the rest of the group than ask people to repeat themselves repeatedly. I’ll eat at a loud restaurant and suffer in silence instead of suggesting a quieter option. My husband is often the one to take the lead and propose an alternative location, sparing me from having to speak up.

      Thankfully, Boomer noticed the comments requesting a transcript and agreed to do it before I even had the chance to ask him. Although it ended up being a bit of a tedious process, not only did he finish it in less than 24 hours, he also offered to transcribe the rest of the episodes if needed.

      This was a big lesson for me.

      Rather than viewing me as a burden, Boomer (who before the interview was a stranger), was more than happy to do what was needed so that everyone could enjoy the episode.

      So if someone who hardly knows me was so eager to help, then why is it that I have such a difficult time accepting guilt-free assistance from people who know and love me?

      Why is it that so many of us dealing with this disorder consider ourselves a burden?

      As I’ve gotten to know more people living with NF2 over the last year, feeling like a constant inconvenience seems to be a pretty common theme. 

      And it’s not just the people who are entirely dependent on caretakers to make it through the day—even those of us who need occasional accommodations tend to get stuck in this trap.

      One thing I realized during this situation is that there is a delicate balance between feeling like a burden and knowing one’s value. 

      Yes, our condition can be very taxing for those around us.  We might require assistance for everything and cause both a mental and a financial strain on our family. But above all else, we’re the ones having to live with this disorder and the daily challenges it presents. 

      We’re the ones feeling the full weight of our reality.

      God calls us to live in community with others for a reason. 

      We aren’t meant to do life alone. We’re worth helping.

      And if I believe that truth, then why should I feel guilty for asking others for assistance?

      Now, I can’t speak for those who depend on constant aid from their loved ones. I’m not there yet, so I won’t pretend to understand.

      But I do know that the more we label ourselves a burden, the more we become one.

      We all need help sometimes and calling ourselves a burden doesn’t lessen the load on anyone else. It doesn’t take away the fact that we still need help. It does, on the other hand, make it harder for others to help us over time.

      Yes, some people might resent the amount and frequency of help you need.  They might view you as a total pain and an inconvenience.

      But how others view you is not your responsibility.

      Your responsibility is to show love and gratitude for every bit of help you receive and to return that kindness whenever you are able. 

      I know this is often easier said than done and that years of repressed guilt won’t fall away in one day. But I hope this gives you a little freedom to begin giving yourself and those around you a little grace.

      Thank you to those who rather than seeing yourself as an inconvenience, spoke up and asked for the podcast to get transcribed. You recognized that you deserve to hear everything just as much as everyone else. You taught me a valuable lesson. 

      And thank you to Boomer (who you can follow HERE), for living out your mission of kindness and showing the power of simple good deeds. 

      If you haven’t listened to the episode yet, click HERE and go to the episode titled “Being Positioned” to play it. And if you are hard of hearing or deaf, click HERE to read it.

      If you want updates about our journey, subscribe to my blog to receive posts directly to your email. And if you want to keep up with us daily, follow me on Instagram at beingpositioned or Facebook @beingpositioned!