Red Band Society: "I Can Take the Disease, but I Can't Take the Pressure."

I do not want to scare off all my optimistic well-wishers. But lately an emotion has been steeping inside me that I couldn't put into words. 

Then I watched the last episode of a show called the Red Band Society which takes place in a pediatric unit of a hospital. There's medical stuff, a little morbid humor, and kids (though I do not recommend the show to kids or to any of my straight-as-an-arrow LDS friends; there are parts I have to skip). The kids in the show hang out, go to in-hospital school together, and support each other as each faces their own diagnoses. I have enjoyed following the characters thus far; maybe it's a nurse thing. 

Finally though, that emotion I was feeling was put into words. I jotted down the dialogue. 

In this first part, Leo, a teen cancer patient, leg amputee, and leader of the Red Band Society (group of sick kids who have each other's backs) is fixing a wheel on his wheelchair when a teen cystic fibrosis patient named Mae, who wears oxygen and carries an oxygen tank on her back, approaches him. Mae has been an online support group friend with another cystic fibrosis patient named Dash.

Mae: "Need a hand? I may not look like it, but I know my way around a toolbox. I'm Mae, by the way."

Leo: "What are you doing here? Dash is waiting for you."

Mae: "Yeah! But I wanted to see if you were ok."

Leo: "I'm fine."

Mae: "You're more than fine. You're 'Superman!'"

Leo: "I'm what?"

Mae: "Dash has tag names for all of his friends online. Yours is Superman, 'cause he said 'Nothing can keep you down.' You beat cancer, you brought the Red Banders together...you're like a real-deal hero!"

Leo: "Yeah, well I don't feel much like a hero right now."

Mae: "'Cause you lost the wheelchair race?"

Leo: "No, because my cancer is back."

Mae: (Pause) "THAT'S FANTASTIC!!!"

Leo: "WHAT are you inhaling? How, in ANY way, is that good?"

Mae: "Uh, it means you don't have to be Superman anymore, which, I gotta say, sounds...EXHAUSTING. ...Getting [cancer] a second time proves you're not invincible."

Leo: "So, I should be happy I have cancer?"

Mae: "No, you should be HAPPY you can finally take off the cape! I don't know how familiar you are with...Superman..., but it's like in Superman II, when he loses his powers--"

Leo: "--and he gets the [c--p] get kicked out of him."

Mae: "YES! Wasn't that awesome?! I mean, sure, he got beat up and it was painful, but he got to be with Lois Lane!... He got to have a real conversation for once in his life! He didn't have to feel like the future of Earth depended on him! I mean, it's gotta be such a relief, don't you think?" 

(Red Band Society, "Waiting for Superman," season 1, episode 13, 21:05)

---

This follow-up to the previous conversation really holds the meat for me. I thought I was overcoming Lyme, but the last two weeks have kicked my trash, and I wonder if my progress against Lyme has regressed.

In this scene, as a last-stitch effort to fight Leo's returned cancer, Dr McAndrew applied for Leo to be part of an investigative trial to fight it.

Leo's mom: "Are you serious? He got into the trial?!"

Dr McAndrew: "He starts tomorrow."

Leo's mom: "Oh! Oh, that's amazing! (kisses Leo's cheek) Can you believe it, Leo?!"

Dr McAndrew: "You make good things happen, buddy!" 

Leo: "No. Don't say that...

Leo's mom: "Honey..."

Leo: "Mom,...look. I got cancer twice; I could die. I'm not lucky. I'm not Superman, so let's stop acting like I am. 'Cause I can take the disease, but I can't take the pressure. Ok?" 

(Pause)

Dr McAndrew: "Ok." 

Leo's mom: "Ok." 

Leo: "Good. So, uh...tell me about this trial." 

(Red Band Society, "Waiting for Superman," season 1, episode 13, 36:20)

It's natural to think that for a young person like me, illness + treatment + time = good health. I'm a tough, pioneer woman. I've been an athlete. I've been a brainiac and a convocation speaker. I'm a professional. I used to really have my stuff together. 

But dang it, I am sick.

I have clear skin from the antibiotics and Paleo diet that make people think I'm healthy. I am small-boned and thin. Eight years of orthodontia show in my smile. I dress pretty well and often do my hair and put on mascara when I leave the house. I generally have decent posture from my ballet days. I work on incorporating Christ's light and love into my fibers every day. In other words, I think I naturally carry an air of wellness. And for anyone who knew me before all this, I still look the part of the healthy, smart dancer nurse girl that I once was. 

But you don't see that I change into old dance pants when I get home and lie down for hours at a time. Sometimes I don't leave my bed all day. If I am out and about, it is because I forced my body to pump out extra adrenaline, and when I get home, I WILL collapse (without sleep to console me). You don't see that I spend half a day twice a week at the doctor's office getting treatments to keep me afloat. You don't see me awake until three in the morning with insomnia and my absurd adrenaline rushes. You don't see that it's almost impossible to nap, and that I can't truly relax anywhere but at my own house. You don't know my heightened social anxiety, and the hollow shell that Lyme has made me become. One Lyme survivor said it felt like she was dead inside her body--that the essence of who she was no longer lived. 

When I feel like screaming to the world that I am well again, I will. But I'm kind of tired of the hope people have in me. What I mean to say is, I feel the like I let people down when they ask how I'm doing, and I'm honestly doing worse that day. For me, I've done worse for two weeks. 

But people have fasted and prayed for me, served me, given gifts to my family, shown faith in me, written cards of encouragement...I could go on and on. There are so many well wishes and gestures of kindness toward us, and we are so grateful. But when people hope that I am overcoming physical illness, and I'm actually not, at least not measurably, it feels like there's nothing to show for all their care. Their smiling, hopeful, "how are you" faces drop when I report that things are not worse and not better. I get a lot of optimistic responses; that's probably just what I would do too. 

But I feel like saying what Leo said: "I could die. I'm not lucky. I'm not Superman, so let's stop acting like I am. 'Cause I can take the disease, but I can't take the pressure [to overcome it]. Ok?"

The expectations I had for my life at this age have not come to pass with my health as it is now. I have adapted to my life as it is though, and I feel optimism. But I'm not Superman. I don't know if I will overcome this syndrome of diseases. All I can do is live in the present day to day and praise God for absolutely everything.

Some people are meant to be well. Some are meant to be healed. Some are meant to be chronically sick, but alive, and to teach others service while they learn to be served. Some are meant to die from sickness. There are many other possibilities of how life plays out for each of us. 

I don't know what my path will be. But some days, I just can't believe in wellness, because my first instinct is to equate wellness with happiness. I still have to consciously think otherwise and be happy without wellness. 

We can't wait to be rich, or educated, or accomplished, or to have a large family, or a house, or to travel, or whatever before we are happy. 

Being cured and being healed are different. I am healing all the time, in my spirit especially. And who knows, maybe one day I will be cured. But I'm not obsessing over that. 

Here are some general thoughts (definitely reminders to myself):

*Do not look at me and think I am incomplete today because I am not well. There is potential to be well again, but my value is as much now as it would be in complete wellness. My hurrying to get better ultimately hurts me. I want to report progress to my adoring family and friends, but I need to let go of my people-pleasing and instead practice patience with who I am right now.

*Do not think wellness is a destination I need to reach so I can be "back to normal" and "move on" with my life. I am learning to be ok with not knowing how things will be. I am achieving my potential insofar as I am able, now, even though some would argue the conditions are not right for me. Things are as they should be. God's plan is perfect. 

*Do not be disappointed that I am not better yet. Do not think your prayers and fasting on my behalf have not reached Heaven. They have, and I know it because I have been able to endure and learn. God cares more about my growth than my comfort. I am certain We are following a path We arranged together prior to my birth for my best growth and highest good on this earth. 

*Do not expect me to return "back to normal." I cannot guarantee that, and to my knowledge, I have never been promised that I would fully bounce back (though I now heaven likes to pleasantly surprise us sometimes). Lyme, scleroderma, and the MTHFR mutations may leave me altered for the rest of my life. I am sometimes kindly pressured by encouraging words toward a place of wellness that I may never reach. I am enough, today, sick and everything. "I can take the disease[s], but I can't take the pressure" of reporting and displaying wellness. Yes, I'm a strong, pioneer woman. But maybe this load is lifelong; I have to accept that possibility and press on, like a strong, pioneer woman. 

I am not who I thought I would be at this point in my life, but I think I am wiser. I do not fit the world's mold either; thank goodness for that. Ultimately, I'd rather be custom-shaped in the Potter's hands. I know that in His hands, I am complete and whole.