Getting myself prom dresses london is a highly choreographed, draining routine. First I remove what I call my "sexy accessory" — the breathing tube I've needed for months now—and immediately feel the effects of not having oxygen. I get dizzy. My heart races. My lungs weigh more in my chest with each second. But I can't rush. I also have to move carefully, placing the tube just so, because if it drops and I have to bend to get it, take those symptoms and multiply them exponentially—especially the dizziness. Hooking the tube on a doorknob helps.

Putting on my clothes is like walking with a plate balanced on my head: I must stay calm and deliberate. Every move is calculated; no energy is wasted. When my husband, Henry, is around, he helps with the breathing tube waltz and literally dresses me — he puts the shirt over my head and holds out my pants so I can step into them one leg at a time. "Give me your foot," he'll say, then he buckles my shoe so I don't have to bend down. I joke that I am his life-size doll.

A year ago, I couldn't have imagined this would be my life. Henry and I were finalizing the details for our upcoming wedding, a small destination ceremony in Hawaii with just close family. After ordering a bunch of dresses online, I'd finally found a timeless cap-sleeved, V-neck gown from David's Bridal and made it my own by having a friend sew a lace belt on it. Everything was coming together perfectly, except I was having trouble breathing—I had been for about six months. At first I thought it was asthma, or that I was just out of shape. My regular doctor tried to tweak my medications, but it kept getting worse, so I decided to see a specialist. By the time my appointment arrived, a few days before we would leave for Hawaii, climbing a flight of stairs made my lips turn blue. The doctors seemed unsure about what I had, so they ran a bunch of tests. We asked if we should put the wedding on hold, but they said no, the results would come in while we were away and we could discuss them when we returned. So off to Hawaii we went.

When we got back, I was informed that I would be meeting with my three-doctor team the following week. That sounded ominous. The seriousness made me want to wear something that would remind them I was young and had a whole life ahead of me. I chose brand-new (to me, at least; I'd bought them secondhand) pink J.Crew pants. Bright, colorful, happy pants, which I hoped would help them see me as a fun person, not just a number. Aside from Henry, my parents, the doctors, and me all being wedged into a tiny exam room like clowns in a car, the details of that appointment are pretty hazy, except for the one thing I can never forget: That day I learned that I have pulmonary veno-occlusive disease (PVOD), a lung condition that affects only one in 6 million people. Without a double lung transplant, it will be fatal.

The team was surprised by how well I took the news. But I was still tan and blissful. The ink hadn't even dried on our marriage certificate — and I was wearing cute pink pants. Plus, believing everything's going to be okay is my default setting. Despite the facts in front of me, I felt like my adult life was just beginning. I couldn't help but be optimistic.

And yet, a diagnosis like that is a lot to take in, no matter how upbeat you are. In the following days, I went through some of the stages you would expect: denial and anger, which continues to come and go. I was searching and hungry— hungry for information, of course, but mostly for hope. There aren't a lot of reassuring stats out there, since this condition is so rare. So from the beginning, I've used clothes — and great red lipstick — to help me feel as hopeful and alive on the inside as they make me look on the outside.

I've never been a trendsetter, wasn't best-dressed in high school. In the past, I'd have probably said I felt most myself in jeans. But I have

always gotten dressed up for church and loved how putting on my Sunday best made my spirit shine. Since my diagnosis, that Sunday-best attitude has been expanded; it now includes not only church and doctor visits but even trips to the supermarket.

I often let Henry pick out my outfits, because he chooses much bolder things than I would — he's seriously great at mixing prints. I had to leave my job as a store design special- ist for a franchising company, and right before my last day, I chopped my long hair into a bob and dyed it red. I needed a little fierceness. And I needed to feel like this wasn't an ending; it was the beginning of a new part of the adventure. I've also become a big fan of dresses — just one thing to put on and you're all done! They make me feel light and girly, like the song "I Feel Pretty" from West Side Story. They give me back some of the energy that is increasingly draining away.

PVOD doesn't hurt, it just makes me feel tired and foggy, like it's always 6 a.m. I get spacey, and there are days I can't remember people's names. My body is constantly fighting. My chest feels tight, like my lungs are being held in someone's grip and there's nowhere to expand.

A couple of months ago, we moved from Utah to San Mateo, CA, so I can get on the University of California, San Francisco's transplant list. Lungs don't survive very long outside the body, so it is much better for me to be there and ready when we get the call. It could happen the next day or it could take months — that's just the nature of a transplant. It's hard for me to wrap my mind around the fact that someone has to die so that I can live. I can only hope that whoever's lungs I get, the donation will help bring meaning to their family.

Throughout this process, I've been blessed with so many unexpected little things. Henry's boss is letting him work from California, which is huge not only for the income but also because we can keep our health insurance. Acquaintances I haven't spoken to since high school have reached out. Strangers have donated money to help with the move and medical expenses.

People are putting out such hope and love and kindness. I want to rise to that, which is a big reason I still try to look my best. We all have something we're going through. My challenges just happen to be visible because I have tubes across my face and carry an oxygen tank with me everywhere. Even if I'm having a hard day, I try to get ready and out the door so that people see someone who is facing a trial but is trying:

struggling, but still smiling.

It's important to me to be that person. I've had to surrender to this illness, but I don't want to succumb. When I'm finding it hard to pull that positive attitude and a little joy out of myself, a colorful dress and red lipstick always help.

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