A story about finding purpose

The truth is: I wasn’t going to write a blog post about her. I was going to write a screenplay. Yes. A Movie based on her journey.

That was how impactful it was to spend a few days with her.

But to develop a good drama, I would have to make the main character go through some shitty things, and I couldn’t do it. That’s a thing among writers, you know? Getting attached to the character while writing some emotional stuff… The thing that I should have been smart enough to realize is that I was already attached even before I start writing the story. It was a lost cause to try fighting against it.

But first things first. I met Amanda kind of in a professional manner kind of having friends in common: it was a mixed situation because she was not working directly with the company that I worked for anymore, but everybody knew her… and me.

Of course, I noticed she limped a little bit. But I never paid that much attention or asked her anything for 2 reasons: 1) she didn’t give so much attention to it either, so she was always doing what everybody does and I never thought it was something really serious; 2) she always had so many things and beauty and smiles and stories to share that we never got to talk about that.

However, a little more than a year ago, she posted something about it. September is the conscientization month for the Charcot-Marie-Tooth Disease. So by that time, I knew, but I didn’t really KNOW – if you know what I mean.

Please don’t judge me: we weren’t that close, and I wasn’t able to grasp all the implications of her condition just by that post. 

But I’m blessed, and life always has it’s way to turn your head to important things, so I was fortunate enough to receive Amanda in my house for a few days.

Completely clueless, I scheduled a Wine Hiking in Malibu and – to make things worse – we lost track of time in our previous sightseeing, so we were not able to get back home for her to put an adequate shoe to go hiking. She never ever blinked about it. She was excited to do it anyway.

So when we realized the ups and downs in the mud and slippery rocks, she started asking for a little help and explaining the details of her CMT. Man, tell me about mixed feelings! Part of me was just worried she would fall or something. And part of me was ABSOLUTELY IN AWE to see that woman putting herself in a really vulnerable position and also overcoming herself every step of the way. Things got emotional for me. When I placed my head in my pillow that night, I could not think of anything else rather than what an amazing person. More people should get to know her.

That’s when I decided to start interviewing her to write the screenplay. And we went on and on in our meetings through Google Hangouts (after all, she works at Google), and I will share some really tiny bits of that with you. All quotes are excerpts from our talks.

1) How to deal with something that you don’t know what it is?

Amanda started feeling something weird in her body by the age of 9. She would fall frequently… just walking in the street and suddenly she would fall. 

Her mother was anxious and started taking her to all kinds of doctors. By the age of 12 she started losing foot movements and muscle strength. She also began to stop wiggling the toes and feeling the legs weaken. At that moment, she thought she was going languish to death.

“In that time, I thought: I will languish to death.”

From this point on, until about 18 years, everything has dramatically worsened. She had night cramps and woke up screaming. Her mother and sister would help by massaging her and rubbing alcohol.

“It ended up affecting the family a lot. My mother felt guilty because she thought it was something that had happened in her pregnancy. She said, “Daughter forgive me for not being able to help you.” I just cried and said she wasn’t guilty and she said, “One day you’re going to be a mom and you’ll understand that it’s the worst thing in the world that you can’t do anything for your son.”

She lost more movements and muscle tone. All of this has led to a self-esteem problem that is very difficult to recover. She didn’t think she could exercise and kept telling herself that she had nothing to offer other people.

“I thought: What do I have to offer?”

Her medical pilgrimage would continue: from doctor to doctor, never knowing what the problem was. How to deal with a condition that is getting worse and you don’t even know what it is? How would YOU deal with it?

Only when she was 27 years old, a doctor told her that she probably had CMT. Pay attention: probably. How to confirm? Blood testing.

25 blood tubes. Yes. 25. She took the blood exam that her health insurance covered at that time, and this exam was responsible for identifying up to 90% of CMT cases. For the other 10% a new exam should be made… to be more specific: she would have to do a gene sequencing.

This was going to be a movie drama, so you can figure out by now that she was unable to get her result in the blood test, so now she would have to find 4.900 reais (Brazilian currency) to do a gene sequencing. Honey, let me tell you something, 4,9k is a considerable amount of money in any currency.

And there it was. Finally, in 2016, she was able to get an answer. Yes, she had CMT, and her type was because of an alteration in the gene IGHMBP2. Her kind of CMT was just discovered in 2014 and, if the “regular” CMT affected 1 in every 2.500 people, her type was 1 in a 1.000.000. She was literally a one-in-a-million type of gal. At least, after 20 years of being in the dark, she finally got an answer. 

“After the disease got a name, it made me proud!”

Now what? Now she had to realize that there wasn’t a cure yet for her situation and that her future could be even more unpredictable.

2) How to manage a situation that you have no idea how it will progress?

It’s not just the legs. CMT is a degenerative disease that could affect internal organs and other parts. The tricky part is that they simply don’t know how fast it will evolve or not. I mean… We never know what the future holds to us, but this is something else. She lives in an enhanced form of future unpredictability. Again… how would YOU live with that?

“The disease is progressive. I’m terrified of […] no longer having control over my neurological functions.”

I tell you how she lives: taking care of herself and trying to inspire others. She started working out, watching her food, and living life at its best, being kind to people and never – NEVER EVER – taking “you can’t” as an answer. And that is how she did the hiking, and a 4 hours spinning marathon and moved to another city to work at Google and so many other amazing accomplishments (that would be incredible even for someone whose all peripheral nerves obey at will).

Well, she is a fantastic person and has a lot of merits in her change, but she told me her secret ingredient: somewhere along the way, she started frequenting a church, and that helped her in so many ways. She told me that she discovered there that her life had meaning. OMG! We’ll talk SOOOOO much about meaning in this blog later on. Still, right now, I want you to appreciate that she moved from depressed and without self-esteem to the impersonation of DRIVE because she found her reason why: to show people that they can and should always move forward, no matter where are you starting at.

“That was when I thought: God has a purpose for all lives. Including mine.”

Besides finding a purpose, she met her husband in a fantastic sequence of events that would be worthy of a movie of its own, but I won’t talk much about that in this post, just a glimpse: she thought she would never find someone who would love her and marry her as she was. Well, he not only loves her, but he married her at a young age and still – after 13 years of relationship and 10 years of marriage – wakes up every morning, telling how much he loves her and how lucky they are to be together. 

Next challenge that lies ahead of her? Getting pregnant. 

3) This is no fairy tale

Of course, I’m telling you the version in hindsight. Now everything makes sense. Now everything is meaningful and beautiful and inspiring. But you know that there were times when things were just tuff, and she couldn’t see anything else but the fog.

Actually, there are days NOW that are still really bad. Twice a year, she has to do an exam called Electroneuromyography, where she basically has to push herself against needles with electrodes and receive a lot of electrical shocks to investigate what parts of her body are still functioning correctly. 

Even now, after all her life and health improvements, her doctor told her she had to use an orthosis. That means she always has a thing attached to her feet that really hurts her skin sometimes, and she can no longer use high heels (she was just using them on special occasions by now). I know: high heels feel like a small thing to give up to have a more safe walk, but you probably only say that because you get to choose to wear it or not… wouldn’t you agree? It’s not all about the physical pain; there is a lot of emotional distress.

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4) Now you know

I didn’t write this post for you to either pity or deify Amanda. I don’t think she would like neither of those options. I love her story for several reasons, but for this blog, what I like about it is how she was able to reinterpret her condition in a totally different manner.

I’m not saying you have a smaller (or a bigger) issue than she has. Still, you probably agree that having a degenerative disease is no walk in the park, but she is able to find gratitude and meaning. She told me that she is not her disease, but her condition helped create who she is.

“The disease created my strength. The disease created the things I was supposed to overcome. If someone tells me that I can’t, I always doubt and go for it.”

And there is also some anxiety about always overcoming herself (who knows when to stop anyway?). Instead of going back to be a victim or to be paralyzed by that, she started therapy and saught for friend’s help to stay on the right track. And now she knows it’s ok not to be ok too sometimes. That being a sensible human does not diminish the goal she set up to herself to be a living example. If anything, it enhances it and makes it even more relatable.

So, in the end, I’m just here to help her achieve her goal by spreading the word. And to thank her for being my friend and inspiring me every day. But, hey, don’t take it from me: you should follow her and talk to her (she speaks both Portuguese and English).

And what about you? Feel inspired? Don’t know quite yet how to follow her example? You can check our previous post on mindset or stay tuned for our next posts.