Skip to main content

Month: December 2017

The Life You Almost Lived

Grenades. Lots of them. For the rest of your life.


This was how a doctor explained my diagnosis to me shortly after moving to Florida.


He said that from now on it would be as if little grenades are going off in my body and once one problem is taken care of, another fire will pop up.


Sitting there in tears, I couldn’t help but feel the weight of what he was saying.


I didn’t want to believe him. Every part of me wanted [wants] him to be wrong.


A week before Christmas last year, we found out that my treatment was working and that my tumor on the right side of my brain (my good ear) was shrinking.


I was elated! I thought, “This is it—I’m going to be healed!


I’m a firm believer in miracles and hoped that maybe this meant I might be getting one.


Two weeks ago I had another MRI (once again, the week before Christmas.)


After being off of treatment for 6-months, my doctor’s are concerned that my tumors may start to grow again.


The initial report claimed that my tumors are stable, but upon further inspection, my doctor feels that the tumors may have grown slightly since my MRI 3-months ago.


Thankfully, technology allows doctors to perform further analysis on MRI’s, so they can more accurately detect tumor growth, but the tests take time.


So now we wait.


If you read my post “The Art of Becoming Deaf,” then you’re familiar with the doubts I’ve had about traveling this next year.


Emotionally, it’s not easy to take a leap like the one we’ve made, but dealing with my health condition on top of it has been a whirlwind.


I’ve been battling with my fears of what might happen this year, and I’m terrified that my tumors might grow.


While waiting for the final results of my MRI, I can’t help but feel like the doctor’s grenade analogy is unfortunately accurate.


Whether I get good results this time or not, results are only good until the next test.


Then you start all over again.


And wait for the next grenade to go off.


Before my diagnosis, ringing in the New Year was always filled with pure hope and excitement.


My dreams weren’t tainted by the threat of health problems.


It’s hard not to picture this next year [as incredible as traveling the world will be] without thinking about the possible challenges I may face.


Even though I pride myself on my positive outlook on life, I still struggle with feeling helpless.


One of the most important lessons I’ve learned this last year is: You need to grieve.


So, I’m grieving the loss of the life I almost lived.


A life filled with predictability and normalcy. A stable life that followed the path I planned. And a life where I was healthy.


But, also a life that in the words of my husband “would probably have been boring anyway.”


My life may not look the way I originally wanted it to, but in many ways, it is so much bigger and better than I could have imagined.


The reality is life can be hard. For everyone.


And some years may be better than others. We all need to grieve something at some point, but it’s also important to practice finding joy and acceptance.


For me, I’m finding joy in my marriage and the incredible adventure God has given us this year. I’m learning to accept the changes that have already occurred in my life and will continue to happen.


But most importantly, I’m learning to accept the new me [grenades and all.]


[Side note]: I HIGHLY recommend listening to the song “Try” by Mandy Harvey. She’s a singer who competed on America’s Got Talent this year after losing her hearing when she was 18 years old. I recently read her wonderful book “Sensing the Rhythm: Finding My Voice in a World Without Sound.” I’m so encouraged by her story and think you will be too!



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

The Art of Becoming Deaf

A fear of flying: not something I ever thought I’d develop.


I’ve flown at least twice a year since birth. A diet of pretzels, peanuts, and complementary ginger ale are some of my favorite snacks. And a few free hours to read or watch a movie are something I rarely pass up.


This past May my husband was out of the country working for 3-weeks. While he was gone, I took a trip to Mississippi for my best friend’s baby shower.


Since a direct flight from Orlando to Gulfport is a rare find, I ended up on a tiny express jet for the second leg of my journey. After a relatively uneventful flight and a slightly bumpy landing, I made it.


While talking in the car the next night, I noticed my voice started sounding far away and a little fuzzy.


Soon I started hearing a robotic echo as my friend spoke. The ringing in my ears amplified and my panic grew.


One of the most frustrating parts of having brain tumors is you feel like everything is in your head (literally). You question your symptoms and think, “is that really happening?” “Or am I just going crazy?”


My consensus—it’s a little of both.


Over the next hour, it became clear that I was in fact not losing my mind. My hearing in my good ear was declining. Fast.


While on the phone with my husband, we sobbed in disbelief. Could this really be the last time I’ll ever hear his voice?


All I could say was, “I’m not ready yet. I’m not ready yet. It’s too soon.”


The next morning my hearing was worse. I could still hear on the phone despite voices sounding distorted, so I called my friend (who also happens to be part of my medical team). She called my neuro-oncologist, and he instructed me to start taking a high dose of steroids.


A few hours later, I received a call from my NF doctor. He concluded that even though it’s not common, it’s possible that my flight the previous day caused my sudden drop in hearing.


A few weeks after finishing the course of steroids, I had a hearing test and MRI. Both were stable—which provided further evidence for the plane causing my problem, not tumor growth.


Now, 8-months later, I found myself once again on a tiny airplane to visit that very same friend (except this time to meet her baby)!


The fear of altitude-induced hearing loss combined with a lingering sinus infection: not my idea of a good time. No amount of airplane peanuts and free soda could calm my nerves.


Unlike my experience in May though, my prep for flying comes with a few more steps.


A few hours before each flight, per my doctor’s request, I take a small dose of steroids and Sudafed.


Usually, this is enough to prevent any problems, but given my recent congestion and the size of the airplane, I opted to wear special pressurizing earplugs and sucked on life savers during take off and landing to help my ears pop.


At this point, I’m beginning to feel like I’ve mastered the art of hearing preservation.


The past few weeks, my hearing has been particularly challenging. Allergies have gotten the best of me, and after two ear infections and two sinus infections, the threat of hearing loss has been somewhat all-consuming.


I must admit it’s been hard not to think, “What the heck was I thinking deciding to spend the next year traveling…and flying…all the time!”


To pacify my fears, I’m doing everything I can to preserve my hearing.


BUT, I’m not letting it stop me from living my life.


Fear is often paralyzing—at times all I can think about is my fear of becoming deaf. The terrible thought of losing such a precious sense: the ability to hear my husband say, “I love you.”


You never realize how much something means to you until life suddenly threatens to take it away.


Unfortunately, I don’t think that fear will ever entirely go away (no matter how many hearing loss free flights I experience,) but how I handle my fear certainly has changed.


I used to focus on avoidance, as I’m sure most of you do too, but since that’s no longer an option for me, I focus on trust.


The reality is it’s possible that I might lose my hearing over this next year. And as terrified of that as I am, I’m more afraid of letting my fear become my legacy.


If you read my other posts, then you already know that God has done some pretty big things in my life. Through each incident, he’s given me every reason to believe that He is taking care of me.


God often allows us to sit in places where we’re uncomfortable. In those moments, it’s easy to be angry with God and to feel like He’s abandoned us. As painful as those times are, that’s also when we can learn to really trust Him.


I often find myself thinking, “How am I going to handle this or that?” I get stuck thinking about how I’ll survive my potentially challenging future.


When I get caught up in those thoughts, I have to remind myself that God only gives us enough grace to handle today.


The reason the future feels so scary is that God hasn’t given us the means to deal with it yet.


I know that a significant theme in my life this next year is facing my fears. God might be prepping me to be able to handle much scarier things in my life—particularly regarding my health. But, I also know that there are worse things in life and that I’m going to be okay.


So here I am, learning to be brave.


And trying to find the balance between enjoying every bit of hearing I have left, but not holding too tightly to my need to hear to enjoy life.


Whether you’re afraid of flying, afraid to be single, afraid of feeling inadequate or afraid of spiders, we all experience fear but, we don’t have to let our fears take away from our experiences.


What fears have you had to face lately? Feel free to email me, or comment below!


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


Travel Lesson No. 1: Missing Your Flight

The first day of our adventure: October 5, 2017.


After spending 20 minutes trying to close my tiny backpack while my husband sat on top of it (minimalist traveling is tough), we were ready to head to the airport. Breezing through security with 2 hours to spare—a rarity at the Orlando airport, we decided to check out the lounge.


We recently opened a new credit card that grants us access to airport lounges around the world. Unfortunately, this particular lounge is located in another terminal. After a quick debate, we decided we had enough time. Plus, we’re not ones to pass up free food!


As we walked into the lounge, we received an alert saying that our flight was delayed an hour. “Great,” we thought—“good thing we decided to make the trek over here!” Now we have plenty of time.


About 30 minutes before our new flight time, we decided to grab some snacks to go, fill up our water bottles, and head to the gate.


Once exiting the terminal, a TSA agent stopped us and said, “this area is blocked. You will need to go back through security to get to the next terminal.”


With only 25 minutes before our flight was scheduled to leave, we bolted through the crowd praying we would make it in time. If you’ve ever visited “the happiest place on earth,” then you’re probably familiar with the Orlando airport’s usual pandemonium.


45 MINUTES TO GET THROUGH SECURITY—read the flashing sign above our heads.


We didn’t move for 23 minutes. The crowds were so bad that they shut down the entrance so that they could get more people moving, which meant that we had to wait outside of security until it progressed.


By that point I had already found the next flight heading to Washington DC and accepted that we were going to miss our original plane. My optimistic husband, on the other hand, held tight to his hope that we would still make it.


Standing next to the conveyor belt waiting for our bags to come out, we heard a TSA agent question “whose bags are these?”


Confused, we raised our hands and claimed our bags. (Hadn’t we already gone through security once today with no problem?)


As he approached us, he said: “don’t you know you’re not allowed to bring water in?”


Oh. No.


We were in such a rush to make it through security we had completely forgotten that we filled our water bottles in the lounge.


“You’re going to need to go back through security and empty your water.”


Before we even had a chance to beg him to let us go through, he handed our bags to the next TSA agent who promptly began inspecting them.


Thankfully, the new agent took pity on our predicament and gave us a choice to either exit security, empty our bottles, and go back through OR we could relinquish our bottles and avoid the 3rd trip through security.


Bye-bye brand new water bottles.


Running through the airport, wearing ankle boots and a small, but surprisingly heavy backpack is no easy task—but I’m proud to announce that I didn’t trip! Despite my lack of clumsiness, we watched our plane slowly pull away as we approached the gate.


We didn’t make it.


How was it possible that after getting to the airport so early, we still managed to miss the first flight of our new adventure?


Ashamed of our situation, we walked over to the gate agent and admitted that we needed to be on the next flight. Rather than condemning us or questing why we hadn’t made it on time, she just said: “ok, no problem.”


Within 2 minutes we were holding our tickets for our new flight—free of charge.


Filled with gratitude towards the merciful attendant, we sat down, looked at each other and broke out in laughter. The perfect situation to point blame, but instead…we laughed. Because really at that point, how would arguing help?


The important part: we didn’t lose any money, and we were on the next flight. The only thing lost was a bit of our pride and a few extra hours exploring DC with our friend.


It’s easy to lose perspective in situations like missing a flight. Frustration gets the best of us, and we have to take it out on the person closest to us (or at least we think we do).


But what if we take another approach? What if we choose to use unfortunate mishaps as moments where we practice grace instead of criticism?


We both accept blame for the unfortunate series of events that led to us missing our flight. Granted certain things occurred that were out of our control, but we each played a part in delaying our arrival at the gate. And we’ll both admit it.


So instead of arguing, we designated our first mishap as a lesson in “what to do if you miss your flight.” We recognized that our delayed trip is probably the first of many problems that will occur on our adventures abroad, so we might as well accept our need for flexibility. Plus, we figured what better way to start our new life than with a story, right?


(And don’t worry we have TSA pre-check now.)


This is us after we finally landed in Washington DC (4 hours late)!














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