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Tag: rare disease

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.

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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.

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