Living Up to You

On the first calm day I’ve had in weeks, I took some time this afternoon to wander the internet. I happened upon this beautiful story of a young man who left behind music, memories, love, and laughter for his family and friends when he passed away yesterday. Please take the time to watch his story and really think about the beauty of life and all its joys.

“You don’t have to find out you’re dying to start living.” – Zach Sobiech

Life doesn’t always give you what you expect. In fact, it rarely does. As a survivor of a pretty incredible (and awful) experience like Stevens-Johnson Syndrome, I am often told how amazing my positivity and strength is through everything, in spite of everything. Yet we keep seeing stories like Zach’s that show a buoyancy of spirit in the darkest moments. Really, there are a few ways to think about this positivity.

1. Maybe getting close to death makes us happier people. We see this in the movies all the time. Someone finds out he doesn’t have long to live, so he changes his perspective. He lets himself begin to love life and the people around him. He rejoices in the moments he has left. I think part of this is true because we fear less when we know our time is limited. We take risks. We tell secrets. So many people who have experienced being close to death will tell you that there is this sudden realization that the nit-picking things in life don’t matter. The relationships in life, the laughter and the shared tears are what truly matter. These are the legacies we leave behind. These are the pieces of our lives that we take with us.

2. Maybe the best people in our lives are destined to leave us early. Last year an acquaintance of mine was shot and killed when he approached another car at a drive-in to ask for a jump-start. I only saw him a few times a year, but the loss was significant. He was young, planning to start med school last fall. He was one of those people who always had a smile on his face, and that smile had this contagious spark that rippled through the people around him. Everyone who knew Mitt could hardly believe that such a wonderful, caring, positive person had been taken from this world so abruptly. Like Zach’s story above, and my friend Mitt’s story, it seems sometimes that the most special people in our lives are taken far too early.

3. Maybe a positive attitude in death comes from a positive attitude in life. This, more than anything, I believe rings true. When my Great-aunt Ann passed away earlier this year, the wake she left behind was one of love and of hope. Throughout her life, she was always a bright beacon of light for those around her, a spirited firecracker that sparked happiness in everyone who knew her. When her health started ailing, she was sure to keep smiling, sure to keep brightening the world around her. We will miss her terribly, but in the days following her passing, the stories told were of joy and of hope. Her love for her family and for life are the legacies she has left for us all.

I think this is why we hear stories like Zach’s. This is why I make jokes about my eyesight (or lack thereof). This is why we’ll remember Ann and Mitt for their smiles and the joy they brought to the world. A positive life makes for a much more positive passing. Even more important, a positive life seeps into those around us and breathes positivity into their lives. Simply put, positive life creates positive living.

Toward the end of the video, Zach tells us that “Life is really just beautiful moments, one right after the other.” An amazing truth spoken by an amazing individual.


Day 3 – Health Activist Writers Month Challenge

Stevens-Johnson Syndrome: the Beginning

Day 3 (April 3) – Wordless Wednesday
 Post a picture that symbolizes your condition and your experiences.

Stevens-Johnson Syndrome: the Beginning

A reaction to anti-rheumatic medication Arava led to a rather intense form of Stevens-Johnson Syndrome. This photo was taken just a few days into the reaction, in 2008. I chose this photo because it’s about a 5 on my photo scale from 1 to brutally grotesque.

Day 2 – Health Activist Writers Month Challenge

Day 2 (April 2) – Introductions
 Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
 Share links to 3-5 of your old posts (or posts from other Health Activists!) that you think will help
the newly diagnosed.


5 Things You Need to Understand About RA


1) It’s not just for old people.

After “coming out” about having RA, there have been a rather significant number of young adults in my life who have come out about their own autoimmune disorders. Just a few months ago in the grocery store I heard two women strike up a conversation over organic eggs. As it turned out, they’d both been recently diagnosed with an autoimmune disorder and were changing their diets to help counteract the effects. And when I go in for my Remicade infusions every two months, I see people of all ages in those Laz-E-Boys!

2) It is just for old people.

While autoimmune patients seem to be getting younger and younger (I was diagnosed at age 2), the effects of RA in particular can age you very quickly. I make jokes about being a young person in an old body because RA can make you feel like you’re 80! Rheumatoid arthritis hurts. Your joints can swell up and burn and feel like they’ll never work again. On your bad days, getting out of bed can seem an impossible task–no matter how badly you need to use the bathroom. Lifting a glass of water might even seem a feat for only Superman! This is when you realize how important it is to have young whippersnappers around who love you. 😉

3) It may wizen you, but it also wisens you.

I also joke sometimes that I am an old woman living in a young body. My feet might not have traversed this world for very long, but the experiences I’ve had are significant. I understand better than most how to treasure a walk in the park, how to love my body for exactly what it is, and how to relish in each moment of another day lived to its fullest. Bad days can be frustrating, but good days are so much sweeter in comparison. Because I’ve lived beyond “old age,” I appreciate being young more. And I respect my elders much more.

4) Doctors don’t always know best.

In today’s society, we seem to view doctors as demi-gods. Their opinions are like laws. I, too, used to see them that way. And then a young doctor’s attempt to aggressively treat my RA nearly cost me my life and my sight. When my eyesight began to fail, the wonderful corneal specialist I was seeing actually referred me to a better doctor! This happened not once, but twice. I now see the world’s foremost eye surgeon for patients recovering from Stevens-Johnson Syndrome. Yet even then, he couldn’t figure how to keep my RA from interfering with his surgeries. So when my second rheumatologist wasn’t offering the help I needed (and not seeming to care whether I came in at all), I did some research and found a new one. My current rheumatologist has brought me back to normal! The lesson being: if you aren’t happy or aren’t seeing results, get a 2nd opinion. Get a 3rd, 4th, or 5th! Find someone who has read that obscure article relating perfectly to your case so he, too, can bring you back to normal.

And never, EVER, be afraid to ask questions. While doctors might not be able to prescribe certain things, their knowledge of other patients’ experiences can also prove helpful. For example, when the Remicade didn’t seem to be working all the time, I asked my doctor about dietary changes that could help. Going gluten-free after hearing her stories has been one of the best decisions I’ve ever made.

5) You make your own “normal.”

During my flare-up of RA five years ago, I wondered how long it would be until I was “normal” again. I wanted any quick fix that would erase the pain, the weakness, and the frustration of it all. Instead, I got Stevens-Johnson Syndrome, which took me out of the “normal” world for a year, made life painful and difficult (and EXPENSIVE) for going on five years now, and permanently disfigured my eyes. Through it all, I held onto this subconscious hope that one day it would all be fixed. One day I would wake up, look in the mirror, and be “normal” again. I would have my skin back, my eyes back, my youth back. Then one day I realized that the old me was never going to return. My eyes will always look funny. I will always be on some kind of medication or special diet. I will always have to see doctors of one kind or another. And I will always have the immense strength and wisdom that have brought me to today.

So I will always be different. I will always look different. But I no longer wake up in pain. I can exercise without worrying that I will throw out my knees or cause another flare-up (at least, for now). So instead of being “fixed,” I woke up one morning and embraced this new me, this new “normal.” I highly recommend it for you, too. We might not feel normal, but this is who we are. And we can be this kind of normal together.


Check out these links to some past posts that really helped me through the worst days:

Let Them Eat Cake


Beauty is in the Eye of the Beholder

Finding Normal

Fearing Hope, Needing Hope