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!

When my doctor first suggested that I stop chemotherapy and take a break from treatment for a while, my immediate reaction was fear.

What if I lose my hearing? What if my tumors grow?

One of the benefits of being on treatment was that it allowed me to feel like we were doing something to stop (or at least delay) the progression of my disorder. Most patients end up on the drug I was on for years, so the idea of “taking a break” from it never crossed my mind.

Despite my concerns, my doctor urged us to trust his recommendation and give my body a rest for a few months.

Little did we know that a “few months” would turn into a year and a half.

And little did anyone know that we would make the most out of our newfound treatment free existence by quitting our jobs and traveling the world together.

In between trips I continued to have MRI’s and hearing tests every 3-months. We kept a close eye on my condition, but the growth was slow, and my hearing remained stable.

I was okay.

Day two of officially living back in Orlando meant it was time for my MRI and hearing test again. After the growth on my previous scan, we knew it was possible that I would end up having to start chemo soon, but as my doctor went over my new scan, he claimed that it was probably ok to hold off for a few more months. He even offered that I might be able to wait until the summer to get back on it.

I was thrilled!

We would have a chance to get settled at home before needing to face our medical world again. I’d get to feel normal for at least a little longer.

The next night I got a call from my doctor in Boston.

If you ever get a call from your doctor after hours—you know its bad news. 

He explained that they received the final volumetrics report (a special analysis that measures the volume of the tumors) and that there was quite a bit more growth than they initially thought. 

A lot more.

Thankfully the type of brain tumors associated with NF2 are typically small and slow growing, but that also means it’s tricky to detect growth. It’s easy for doctors to misinterpret a scan as stable, which is why the volumetrics analysis is so helpful.

Usually, the full report is ready in time for my appointment, but this time it was delayed by a day.

Unfortunately, that one day was enough time for me to get attached to the idea of avoiding treatment for a few more months. 

I accepted the good news a little too quickly.

As my doctor discussed the new chemotherapy schedule and dosage he wants me to try, I couldn’t help but feel disappointed. 

Not just that my tumors had unexpectedly grown so much…

But that my break was quickly coming to an end.

I must admit I’ve grown accustomed to feeling like a normal person again. After being thrown so suddenly into a medical crisis 3-years ago, I never dreamt I would have an opportunity like we had this last year and a half. 

Other than my routine scans and tests, I had the chance to forget about brain tumors and hearing loss. I got to explore the world, take risks, and be a regular 26-year old. 

I got to feel like me again—a temporary second chance.

I’m lucky. 

One of the first things my doctor said on the phone was that most patients barely make it 6-months off of treatment before needing to get back on it.

I made it 18-months.

But alongside my gratitude for my surprisingly long break, it’s hard to accept that it’s over. 

This last week has been rough. 

From talks of growing tumors, fertility decisions, and preparing to start chemo within the next week or two, it’s been a harsh adjustment. Throughout the tough reality we faced these last few days though, I’m amazed at how perfectly God has taken care of us.

When I had to start treatment a few months after my initial diagnosis, we were still in so much shock that we barely had a chance to catch our breath. We were in constant survival mode and didn’t know how to fit our original plans into the life we were being forced to live.

This time though—it’s different.

It may feel sudden and overwhelming right now, but in reality, we’ve been preparing for this since the day of my last infusion.

We have the upper hand. We know what to expect. We knew it was coming.

Emotionally we’re stronger, and mentally we’re wiser.

God has provided for us in every way and has continued to place specific people in our lives exactly when we need them.

He’s given us constant reminders that He is in control. 

He’s got us.

And every time I start to doubt, I remind myself of the perfect timing surrounding “my break.”

If I hadn’t stopped my infusions when I did, we never would have been able to see the world.

We finished our traveling stint treatment free.

I didn’t lose my hearing. 

My tumors didn’t grow too much.

We had the adventure of a lifetime together. 

Now we’re ready.