Tag Archives: Advocacy

Control and it’s absence: The Invisible Project

I’m a control freak by nature. I’m a pain about group projects, because I end up wanting to do the work myself. I dislike unpredictability, preferring a solid foundation of plans and goals. Through my illness, I’ve lost control of almost everything at one point or another. Before I got sick, my body was the one thing I always had control over, even if other things were falling apart. And suddenly  I didn’t even have that.

I’m the kid who’s had her life planned out since first grade. I was going to college, become a doctor, go to the Olympics, and then somewhere in there have six kids. I think I was pretty adamant about that, at six. As I got older, my dreams and plans evolved, but they were still concrete, and I never once imagined those things could change. When they did, my plan for my life was one of the first things I grieved. I was free-falling with no parachute, and when I crash landed somewhere in between hope and desperation, trying to find my footing on an ever slippery slope, all my carefully drawn maps and plans fell by the wayside as my world changed from living to simply surviving. For a long time, I refused to think about what would happen if I never “got better”. I refused to acknowledge the fact that my life had changed irrevocably, and that even if I woke up tomorrow cured, I’m not the same person who fell out of an airplane with nothing between me and life except for the open sky.

This past weekend, I had the immense privilege of traveling to San Francisco to attend the Invisible Project Gala. The Invisible project is a program by the U.S Pain Foundation, where they tell stories of people living with pain. I was lucky enough to participate in the Kids and Families Issue, and the experience was such a gift. There’s a lot of my journey that isn’t pleasant, to go through or to remember, but to look back and be able to own my story and who I have become- that is the greatest gift of all.

The Invisible Project isn’t about finding a way to be cured, or to be fixed. Rather, it’s about finding a way to manage and move forward. This project and it’s stories are proof that we can and will adapt, despite the odds or the circumstances. I talk about focusing on the silver linings rather than on the collateral damage, but sometimes the damage cannot be ignored. It can’t be fought through. It is simply there, and the best thing you can do is learn to keep going.

I’m no longer scared of not getting better. Sure, I’d like to. I still hope I will. This isn’t what I planned for, or what I ever expected. But this weekend, as I heard the stories of surviving and of living, I was viscerally reminded that I can do this. That my life can and will still be beautiful and strong and joyful, even if I never “get better”.

One of my all time favorite quotes is from the Lord of the Rings. “Not all those who wander are lost.” I’m still wandering. My detour hasn’t yet led me back to the main road- and maybe it never will. Life is rarely what we expect. But when I laid out my plans, all those years ago, I thought of what I wanted out of those dreams. I wanted to be happy, to be able to have those I love around me, and to watch them succeed and find joy. And those things, the things that are truly important- they can be found even in the darkest of times, even on the rockiest roads.

Strength isn’t about being cured or winning every battle that comes your way. If you take away nothing else from my story or the Invisible project, take this: we are much stronger than we first believe.

So here’s to impossible things, to surviving- to finding new roads, new lives, and to getting lost along the way.

Cheers.

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My dad and I. 

Rare Disease Advocacy

Over the course of my journey with rare and complex diseases, there have been many moments of hopelessness. When you’re at the end of the road, when you’ve outlasted all the options- what do you do next? Where do you go on this shaky ground of fear and desperation? How do you take a step when all you’re waiting for is the other shoe to drop?

Because there isn’t any other option. There isn’t anything else. I’ve been asked a million times: how do you do it? You do it because you don’t have a choice. I wish to hell that on the impossible days I could just say “hey! It’s too much! I can’t handle it!”- but that’s not how it works. You go forward because it’s all you can do.

As one of my favorite quotes goes: “Some things don’t require courage. They just need to be done.”

And once you’ve moved on from the quagmire of non-options, you figure out what you can do. You adapt. You glory in the tiny victories, and in the inconsequential pieces of our lives that most take for granted. Your “normal” changes, and you learn to live despite that. Or perhaps because of it.

I attended the Global Genes Rare Patient Adovacy Summit. My first year attending the full conference. I was honored to speak on a panel on young adult advocacy, and something that I feel very strongly about. I also got to listen  to sessions run by amazing activists and awesome people, who educate and advocate and want to empower others to do the same.

I was astounded by the courage and resiliency found in the people who fight tirelessly for medications and legislation and quality of life, despite the fact that for many, modern medicine will not move fast enough. The changes they put into effect probably won’t benefit them, trials and medications they were crucial to the success of may not be their miracle. They are not necessarily fighting for themselves or their family members- they are fighting for the next family. The next teenager diagnosed with an incurable disease. The next parent who has to hear that there is nothing that can be done for their child.

So for those who are healthy, untouched by rare disease: start advocating. Push for cures, even if it’s not your child or you or a family member, even if you know no one who fights an incurable diagnosis. 1 in 10 have a rare disease. And so if you don’t know someone, odds are you will soon. And if that’s not reason enough: medical science has come a long way. As humans, we reach into the bridge of the unknown- but the technology is often moving faster than the people behind it. Yes, science is racing along at breakneck speed but that doesn’t change the fact that for most, the cure isn’t there. Because science doesn’t move fast enough.

That’s not to say it doesn’t help and fix and cure: I would be dead if it weren’t for modern medicine and technology. And so would many of my friends, and a good number of people at this conference.

And yet. For most, there is no treatment. There is no miracle drug. We do not have a way to solve their disease. We do not have a way to solve my disease. So advocates fight for symptom management, for accessibility, for quality of life. For adaptations that can make life better and more livable. And yes, we do fight for cures. But medicine moves slowly. Drug trials take time. And honestly, time is of the essence.

What do you think of when you think of rare disease?

I think of closed doors. Of dreams shouldered, sometimes forever- because things have moved on from living and into surviving.

1 in 10. If it hasn’t affected you yet, chances are it will.

And when that 1 in 10 finally affects you?
There are more than 7,000 rare diseases and disorders. And 95% of them have no treatment. Do you want to take those odds?

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Members of We Are More: some of us were meeting in person for the first time. Everyone in this picture has a rare disease. (Except for Taxi)