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Month: June 2018

2 Years of Marriage

Three months before our wedding—our world completely changed.

I still remember having to call my fiancé, Cardin, to tell him about my diagnosis. Unfortunately, he was living in Florida already, and I was still in Texas.

As I cried on the phone listening to his comforting words, I couldn’t help, but beg God not to let this change Cardin’s love for me.

I had no doubt about the quality of a man I was about to marry, but still, this wasn’t exactly what he signed up for when he asked me to be his wife.

Ironically, my diagnosis happened during the same week as our 5-year dating anniversary, which meant I was flying to Orlando to see Cardin just two days after we got the news.

I was relieved we would be reunited so soon after my doctor’s appointment, but I hadn’t told him about my fear that he would leave me yet. I prayed desperately that a weekend together would calm my worries and reassure me of Cardin’s commitment to our life together.

And what do you know—he showed up at the airport looking like this…

I had purchased the t-shirt in the picture above for him as a joke before he moved to Florida. Little did I know just how meaningful it would become for me!

That weekend was emotionally exhausting for both of us as we grieved the life we were supposed to have together and tried to figure out how NF2 was going to impact our future.

One of my immediate concerns was that I would lose all of my hearing before our wedding.

Since I had lost my hearing in my left ear so quickly (in a matter of minutes) and my right ear had already started to decline, my doctors weren’t sure what was going to happen.

The wife of one of my close friends from grad school happened to be a sign language interpreter and she agreed to teach us our vows in sign language.

That way, even if I wouldn’t be able to hear our vows, I could still fully experience them.

Saying our vows verbally and in sign language quickly became more than just a backup plan to us.

We decided to keep it a secret from our friends and family.

We weren’t planning on having to deal with the “in sickness and in health” part of our vows quite so soon, and as much as others didn’t want to admit it, our loved ones had some concerns about what this would mean for us too. Especially since I was moving to Orlando shortly after our wedding and would be leaving my current support system.

Our prayer was that our vows would be more than a commitment to spend the rest of our lives together. We wanted our friends and family to truly feel the unconditional love that Cardin and I share.

We wanted them to know that we’re in this together, forever. No matter what that may look like.

Fast forward two years later…

Let me start out by saying that marriage is hard. And learning to deal with a serious life-long medical condition at the same time as learning to have a healthy marriage is even harder.

I’ll admit, when I dreamt of our first year of marriage, I didn’t think it would include MRI’s, chemo infusions, and frequent hearing tests. BUT, I definitely didn’t think our second year of marriage would consist of us quitting our jobs to travel the world together!

All because I have NF2.

God can use the hardest parts of our lives and turn them into the most beautiful outcomes—the timing of my diagnosis and our wedding is a complete testimony of that happening.

As unbelievable as our first two years of marriage have been though, the reality is that some days are a challenge. We both cope with bad news very differently, and we’ve had to learn how to meet each other in our grief continually.

Adjusting to hearing loss is frustrating and has caused more than a few tense moments for us. (We’ve also learned that we should never live in a two-story house again.)

As much as I’d love to say we’ve handled this seamlessly and have treated one another with perfect patience…I can’t.

Because we certainly haven’t.

Just like any other marriage struggling to learn effective communication strategies, we’ve had to learn that on top of adjusting to my constant chorus of “what did you say”?

Dealing with NF2 also means we’re learning to have a lot more grace and forgiveness towards one another. We’re both human, and we will continue to make mistakes for the rest of our lives.

It’s not about learning to be perfect; it’s about learning to love each other in our mess.  

My prayer before I was diagnosed with NF2 was that God would give us an unbreakable marriage.

Now my prayer didn’t exactly include a chronic illness and using that as a means of giving us an unbreakable marriage—but I’m so happy that God works in such mysterious ways!

During the last 9-months of traveling, we’ve pretty much been together constantly.

As risky as constant togetherness while under the stress of being in a foreign country can be, it’s taught us an incredible amount about each other.

We’re learning subtle things about one another’s patterns and habits that we would never have noticed otherwise. We’re learning to adapt to stressful situations together. And we’re learning to rely on each other and appreciate one another’s strengths more than ever before.

Starting our marriage so soon after my diagnosis was a challenge and felt completely unfair, but now…I can’t help, but be grateful for such seemingly awful timing.

Cardin has always been and will always be my favorite person. He’s my best friend, my encourager and my constant entertainment. He loves me in ways I could never have dreamed of, and he is beyond any husband I thought I deserved.

God provided me with the perfect partner.

And I’m happy to say that doing our vows in sign language was just a glimpse of the amount of love we have for each other and the love that God has for us.

In honor of our two year anniversary, I’m sharing our wedding video below, so you can relive our big day and see our special vows! And of course I couldn’t resist sharing a few pictures!

[embedyt] https://www.youtube.com/watch?v=rpE8sHUXQz8[/embedyt]

Images by Charla Storey.

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!

Easing The Transition

A year ago in May, my hearing in my good ear rapidly declined and left me temporarily deaf (if you haven’t read that post yet, click here).

 

It might sound strange, but when I realized my hearing was dropping, one of my first thoughts was—I’m not going to be able to listen to podcasts on my way to work anymore.

 

I had recently discovered the wonderful world of podcasting and loved my 30-minute commute to and from work. It meant I got to spend an hour every day listening to some of my favorite shows.

 

I can’t explain why the thought of losing my podcasting listening ability was so depressing other than it was something simple that I did on a daily basis and NF2 was about to steal it from me.  

 

As my hearing returned a few days later, I began thinking about small transitions I could start to make to help ease the process of becoming deaf.

 

One way that I started to do this was increasing the amount of time I spent reading books.

 

I’ve always loved reading, but at the time it wasn’t something I was doing habitually or with intention.

 

I still listened to podcasts during my drive to work because I want to enjoy my ability to hear as much as I can while I still can, but I started focusing on reading as something I enjoy even more than listening to podcasts.

 

To me, reading is safe.

 

Yes, I have cataracts in both of my eyes (which can thankfully be removed one day), and yes it’s possible that I could eventually develop optic nerve tumors, which may affect my eyesight over time. But the likelihood of me becoming completely blind is relatively low.

 

Reading is something that I should be able to do for the rest of my life.

 

So, I decided to commit to reading for at least fifteen minutes before bed every night. That may not sound like much, but at the time I was on treatment and working a full-time job, so I pretty much fell asleep the second my head hit my pillow.

 

My goal was to start building it into my daily routine and to have something new to look forward to every day.

 

My husband even bought me a Kindle (found here) for our anniversary last year, so I could start renting e-books from the public library. Since we had invested a little bit of money into my newfound reading habit, I had extra motivation to keep up with it and even started carrying my kindle with me in my purse. So, instead of spending time scrolling through Facebook during the day, I would pull out my kindle and spend a few minutes reading.

 

Reading is also a great way to get lost in another world for a bit—I would never encourage avoiding your problems, but it’s ok to find a healthy distraction. And that’s what reading started to become for me.

 

During our travels, reading has become an even more prominent part of my life—what better way to pass the time during a 6-hour train ride than with a good book?

 

And as a fun way of tracking the books I’ve read this year, I’ve created a book list, which you can find here!

 

Another activity that I’m incorporating into my daily routine is yoga. A few months ago, my NF doctor recommended that I start practicing yoga to help build my core muscles so that my body can compensate for future balance issues.

 

My tumors are on my balance nerves and will eventually cause permanent nerve damage. By doing yoga now and strengthening those muscles, my body will be able to tolerate the balance challenges later.

 

Just like I did with reading, I wanted to start out with a small daily goal to help me build my practice and start incorporating yoga into my every day life.

 

I started following Yoga With Adriene on YouTube and did her 30-day yoga challenge.

 

Even if it meant all I did was her 7-minute bedtime yoga video or even just a couple of sun salutations in the morning, I made sure I spent at least a few minutes almost every day doing yoga.

 

At the same time, we had just started our year and a half of traveling, which meant I needed to figure out a way to be able to do yoga no matter where we were in the world.

 

Since we’re minimalist travelers, I didn’t exactly have room for a big yoga mat in my backpack.

 

I was able to find the perfect travel yoga mat (found here). It’s thinner than a typical yoga mat and doesn’t provide much cushion, but still allows me to do yoga even while we travel. Special thanks to my wonderful husband for generously agreeing to pack it in his bag!

 

 

I’ve also started using an app called Down DogIt’s free and has been an excellent way for me to squeeze in quick yoga sessions before we set out on our days of exploring.

 

One of the greatest things about yoga is its ability to reduce anxiety, which is something that just about everyone experiences at some point (especially those of us with a chronic illness).

 

But more than that, yoga has been one of the only things that I’m able to do to exercise some control over my disorder.

 

Stopping treatment has been great, but it’s also been challenging to have to sit back and “wait and see” what my tumors do.

 

I’ve always been a bit of a control freak, so this watch and wait technique doesn’t come easily for me.

 

Yoga allows me to have at least a little bit of control over the impact my tumors will have on my body since it’s something that I can do to reduce some of the problems I may eventually develop.

 

Part of dealing with a chronic illness is finding ways to put joy back into your life as you adjust to your new normal. Some adjustments can be rough—like learning to cope with chronic pain, but other changes can be positive and powerful if we let them.

 

While working with cancer patients this past year, I started realizing how difficult it was for them to find meaning during their day.

 

Whether they were newly diagnosed, on treatment or in remission, they all struggled to find ways to feel like themselves again and to find happiness on a daily basis.

 

I started working with each of my patients to help them find small, simple activities that they could do each day that helped bring them a little joy and a sense of accomplishment.

 

Eventually I started practicing what I preached, and reading and yoga have officially become the two things I do to bring a little extra joy into my every day life.

 

Not only do I love reading and yoga, but they’ve also been healthy and simple ways to help me process what I’m experiencing.

 

Adding books into my daily routine now is allowing me to CHOOSE to focus on reading rather than suddenly having to find a new favorite past time one day when my hearing declines.

 

Yes, it’ll still be hard to let go of some of my favorite things or adapt them to meet my hearing needs (like using subtitles on the TV), but maybe it won’t hurt quite so much since I’ve already been incorporating small ways of prepping for it now.

 

Maybe it’ll make the overall transition feel a little less traumatic.

 

It’s not about stopping things you love—it’s about finding new focuses in addition to the things you already like. Things that are positive, healthy and can build you up emotionally, mentally, or physically long-term.

 

That way, if you eventually lose the things you initially loved, you still have something to hold onto.

 

In fact, you have a couple of new things that bring you just as much joy (if not more) as the other things.

 

…Now you just have a little extra room in your schedule to do the new things.

 

Yoga and reading are two activities that I do for myself to help me cope with my new life. They help me feel like I’m doing something positive for both my mind and my body and they’re providing me with small meaningful steps to ease my transition into what my future holds.

 

What are some things you do to help you feel a little extra joy during your everyday life?

 

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!

 

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