I sat down to write and all the thoughts within me faded to an indistinguishable blur. But I will try to make myself write anyway, because those words are packed away somewhere. I started reading Hell is a Very Small Place: voices from solitary confinement. My interest in the movement to end solitary began several months ago, when I came across the Campaign for Alternatives to Isolated Confinement. I am jarred and anguished that this form of torture is occurring in our country and people are not just turning a blind eye, but also encouraging it. We continue to build Supermax facilities specifically designed to house people in solitary units so we can continue this form of degradation and punishment that severely violates Geneva Convention standards. Our legislators continue to ignore proposed laws that will change this barbaric, ineffectual, and counterproductive treatment of prisoners -- not excluding children, pregnant women, people with mental illness, and elderly prisoners -- despite evidence that it costs more, leads to higher recidivism, generates violence among inmates, exacerbates and even creates serious mental problems, and has been deemed cruel and unusual. I am deeply disturbed and mortified by the practice of solitary confinement. If you think it is "radical" to fight for basic human rights of prisoners, it is time to wake up. Here is a blog post I wrote with a little more background.

I'm sure my friends find it irritating when I try to relate to their troubles or suffering through my own experiences. But today, as I began Hell is a Very Small Place, I couldn't suppress that tendency of mine. It is a tendency that allows me to feel and understand, very deeply, the problems of our criminal justice systems and the current human rights violations we are allowing.

​My transplant experience woke me to everyone's ultimate lack of control of what will, what is, and what isn't; my utter humanness and fragility; the horrible reality of human inaccuracy -- how wrong our perceptions can be and how easily the human mind can be altered by experience, environment, and exposure. I could not speak with the ventilator, and just for that amount of time I lost my sense of personhood, and it left me to internalize much of what I was experiencing. I tried to scream once just for the sake of expressing how restless I felt, but all I could do was open my mouth.

One night a week after surgery, in that hospital bed in the ICU, where I was confined by my weak body, chest tubes, and IVs, I imagined myself, so vividly, sliding out of the sheets and walking down the hall. I was only able to wiggle my right leg over a few inches before I realized I couldn't even sit up on my own. That night I had a tangible nightmare that I crawled through a rainstorm and found a silver crucifix in a puddle, and a voice said, "FIND JESUS," and I was so thirsty but could not catch the rain in my mouth. Water, water everywhere, and not a drop to drink. I am completely blocked and unable to believe in god; I'm just not wired for it. After a hopeful and ardent stint in sixth grade, I discovered faith like that just didn't work for me. Anyway, I don't know what that nightmare meant but I think of it from time to time. I think it was my brain preparing for a void that was going to occur after the transplant, after all that medical trauma, after I had come to terms with death and had to become so indifferent to loss in order to cope. Or maybe it was my body complaining that my mouth was terribly dry. Either way, I emerged from my transplant experience restless, unsettled, and unable to sit still long enough to recall these details much.

I know that my experience with powerlessness, immobility, loss of self, uncertainty, loss of memory and loss of a sense of reality did not come close to what it is to be in solitary confinement, and not just because I had many things that someone in solitary does not (a loving family sitting with me all day, an end in sight, an unbroken trust that I would be taken care of, a far more comfortable and sanitary environment, people who wanted me to stay alive, to name a few differences). But simply reading the Foreword and Introduction of Hell is a Very Small Place was enough to unearth a feeling that I had long forgotten: I know what it is to not feel human anymore. To feel oneself disappearing, knowing that "self" is a construct that can be torn down more easily than we realize. To brutally comprehend one's own insignificance. To face the arbitrariness of that sliver between life and death.

There must be something that you, too, have experienced that can act as a magnifying glass, a translation; something that will give you a deeper understanding rather than a simple recognition that our prison system is currently violating human rights. You must have something in your arsenal of experience that you shut your eyes to, that thing you wouldn't wish on your worst enemy. Now multiply it; imagine experiencing it at the same intensity and uncertainty for days that turn to months that turn to years, and you may have a glimpse of what solitary confinement is.

Can we be anything we want to be? Depends on what you want, I guess. If I wanted to dream small, then yea, I could probably be anything I wanted. But are we saying the possibilities are endless, or that everything is possible? The difference being we can create infinite new pathways for ourselves, but maybe not every option will actually be possible for us. This is everyone's limitation: there are some things we are not cut out for. We might not be smart enough, strong enough, healthy enough, tall enough, fearsome and persuasive enough, and so on. That is the crux of picking a career with chronic illness.

For me, with a tracheotomy tube and a windpipe with scar tissue that doesn't seem to want to properly heal, a suppressed immune system, and the extra baggage that comes with CF post-transplant, I know there are limitations to what I can do. The adage You can be whatever you want died long ago. But I must pursue what I can within reason; follow my dreams as far as my health will allow; compromise where I need to; redirect. What makes such a demand so difficult is that there are times when I am so healthy and full of energy that I can do the work of two people. During those times, I take on as much as I can so I can make it worth it. I seamlessly juggle full time work, marriage, family, volunteering, mortgage, book promotion, and grad school on the side. And then I slip and everything scatters. I find I am great at commitments until I can't be.

My advice to you, fellow transplant recipients, fellow CF patients, fellow survivors of chronic illness, is that no matter how much you take on when you are well, be sure that each entity will accommodate your circumstances. First and foremost, find a career that will be flexible when you need it to be. That does not mean you can't handle a demanding job, because many of us can; it just means you need that demanding job to accommodate your health, not the other way around. Some people might not feel comfortable disclosing their chronic illness with their employer, but I say the people you make long-term commitments to should know and accept that sometimes your situation switches with the wind - you catch a cold that turns to pneumonia in a few days, your body does something wacky, new medical demands fly out of nowhere. That takes a lot of stress off you worrying who you might disappoint. It can also make it easier to plan ahead.

Most importantly, you need to accept the fact that life can change more quickly than you want it to. If you resist, such change will be more painful than it already is. One month I was a new college graduate, on my way to Lake Placid with my family and knee-deep in freelance writing projects I had committed to; the next month, I was on an operating table, the doctors scrambling to get a pulse.

You know that your illness won't allow you to ignore it, so don't plan as if you can. Instead, plan with a degree of openness: with your spouse, your family, your employer, your teachers, and so on. Let them in, even just a little, so they can see that there may be times that you need to reroute before your illness takes the steering wheel. Lastly, remember that you always need room for enjoying life. Just because you need flexibility to handle your medical demands does not mean you shouldn't also expect room for happiness.

For the longest while, I viewed time as a ball of dough -- if I needed more, I believed it would rise for me, make more room for all the things I want, need to do, all the people I wish to say yes to. Now that I have drowned in all my yes's and I can's and I will's, that dough has baked to one round loaf that needs to be divvied up with sound discretion. When I do this, I have no moments of rest or time to slow my mind and reflect. It's exhausting and tormenting, because I want to give all that I am to everything I care about and commit to. Work, volunteering, maintaining the important relationships in my life, taking care of myself, following through, writing that thank-you note, calling that insurance company, setting up that doctor appointment, and on and on and on.

I think it boils down to one thing: I want to make a positive imprint on this world and quickly, since once you see death so closely you realize it never forgets about us, and if I slow down long enough, I will begin to question what that all means.

This is me on my wedding day. You can't tell, but I've taken painstaking efforts to hide the t-tube in my neck. For those who don't know, a t-tube is similar to a tracheostomy, but it is able to be capped given its T-shape, which allows air to flow in three directions. Especially in your 20s, having this in your life can be socially awkward; I have more scarves than shirts in my closet. When I'm unable to hide it from strangers, coworkers, even friends, I'm subject to stares, questions, even hurtful remarks.

It feels different to laugh, to swallow, to run. My lung transplant saved me, but it didn't free me from that feeling of not having enough air; the trach takes me back. And yet, that's not my biggest obstacle. I want to talk about beauty here, and how having a t-tube has been a lesson in self-acceptance and comfortable self-awareness.

On my wedding day, I felt more beautiful than I'd felt in a long time. Maybe it was the fact that I had a jeweler design a special necklace to hide the t-tube. I also had the privilege of wearing that dress. And I was marrying someone I love deeply, and who loves me. Perhaps this latter fact is what makes me able to feel beautiful in the day to day, when I no longer have these frills and sparkles to mask reality. I believe his love is what carried me through the changes that I couldn't control: all the scars that have become a part of me, the seven-inch line where surgeons cracked opened my sternum twice. That not-so-glamorous trach that was placed three years ago. The heavy breathing. The fear of losing that breath. 

What 20-something does not want to feel attractive? I have a trach but I still want to wear cute dresses and tank tops without the stares and commentary: is that permanent? Oh, poor thing. Why don't you just cover it? And I do; even on hot, humid days, even when it hurts, even when it keeps ruining my scarves, I try to hide this part of me on days where I'm not emotionally equipped to deal with rudeness.

Because pretty girls do pretty things, my 11th-grade Spanish teacher said more than once when I coughed too much in her class. 

Pretty girls are healthy, vibrant, unmarked, unscarred. I am not a pretty girl. That is not what I do. I'm no damsel in distress. I don't need to be rescued. (I clung to that Ani DiFranco song in high school). But what if I were bold and just wore what I wanted? I tried that for a while; the not-hiding. People then made it their business to dole out advice, they were callous, or they would inadvertantly make me feel as though I were intruding on their space.

He always called me beautiful, even when I weighed 70 pounds after my transplant. Even when I had to have this invasive piece of plastic inserted into my neck. He says he doesn't notice it. He says, wear those pretty summer dresses; you make them look good; who cares if people look at it, comment. I worry that these words are rehearsed, insincere. But he does not give me any reasons to reinforce those worries.

Every few months, I go through a procedure to change the t- tube, and sometimes I can't talk for days or weeks. The voice box is blocked. These are times I can't hide it with a scarf. He tries to read my lips, my impromptu sign language. To speak is not to be heard; you need listeners for that, someone who will take time to understand who you are and what your words mean, at heart. These are the days after a procedure, something we call "routine." He playfully calls the humidifier machine that I hook up to the trach my "scuba." He watches me more, just to be sure I'm okay, but not in a way that makes me feel weak, incapable. Sometimes, I wake up and see ghosts next to my bed, staring at me, and I jump and he pulls me to him, half asleep, without even realizing; we laugh it off in the morning. My crazy dreams.

Normal is how we adapt. How we come to look at challenges - not as challenges but as pieces of our lives that can be held or disposed from our memories, if we try. We can choose what we see. There are people who define me by this, who call me "strong," whose first question when they see me is, "How is your health?" The outside world often forces my self-awareness. "You don't sound so good," strangers say to my cough; in line, at the store. "I'm not sick," I mutter.  He is my haven of myself; he allows me to talk of my differences only when I want to. He does not bring attention to them. He trusts that I can care for me.

I've reminded myself that to be attractive is not the same as being valued, and it would be redundant to elaborate on the opposite messages society pounds into our minds on a daily basis. Beauty and value are not equals, and what we define for ourselves will always be different than what the outsider defines us as -- and we must let that be. He and I share a perfect space; when we look at each other, we feel who we are, without criticism, without self-loathing, without fearing what we lack. To be beautiful, one must be seen. To be seen, one must simply allow it.

So often when we hear about someone's life with disease, we see the word "Positive." I keep a positive attitude - I maintain a positive lifestyle - Despite all I've been through, I remain positive. Positive, positive, positive. Even my book With Every Breath stresses "positive thinking."

Recently I read an essay on a girl's life with CF. The author wrote (and I'm not quoting exactly), "On top of CF, I have scoliosis, asthma, arthritis, diabetes, and god knows what else. I take a lot of pills every day and do a lot of treatments, but I keep a positive attitude." After the first sentence, seeing the words positive attitude made me stop and think. To me, the essay didn't exude positivity in any way. The words "and god knows what else" indicate the author feels that there is probably more wrong with her than she even knows, that something bad is bound to come along eventually, and worse things will probably happen to her. Despite all that, she believes she maintains a "positive attitude." I'm not saying she is wrong; I'm saying the contrast made me consider how our perspectives on these abstract concepts vary widely.

So what is positivity? Is it the absence of negativity? Is it the perpetual presence of encouraging thoughts? The avoidance of negative thoughts? Is it constant reinforcements of clichés like, 'What doesn't kill you makes you stronger,' and 'Live each day to its fullest'? Is it the avoidance of sadness? Is it denial?

To me, positivity is about proactivity. In times of good or neutral health, we seize opportunities to feel fulfilled - like finally riding that bike path, or learning how to make a Souffle. It means thinking about the things we CAN do rather than the things we can't. It means counting blessings rather than problems.

But overall, our true "positivity" shows in times when we are challenged the most. When we get bad news from the doctor, will we hang our heads and think 'This is probably it for me'? Or do we put a fake smile on and cling to those clichés...Life, do your worst...? Personally, I don't think either of those are positive responses. In fact, I don't believe positivity is the "absence of negativity." As humans, we are prone to some negative thoughts - some more frequently than others - self-pity, constant worry, regret, or resentment toward the situation.

I say if you find yourself in the face of terrible news, let yourself grieve for yourself. It sounds like a selfish concept, but if you don't allow yourself a little time to grieve, you won't allow yourself to move on from buried feelings. When you live with disease, many benign things like the common cold can be life or death, and it does no good to pretend that we're not affected by that constant reality. Confront those feelings head-on. Maybe you were just listed for transplant, and it's scary. Or maybe you've been denied a transplant, and you feel like it's a death sentence. Maybe you are back in the hospital again for the second, third, or fourth time this year. You're allowed to feel angry, sad, tired. Feeling those things doesn't make you a negative person. To be proactively positive, you'll feel them with awareness, confront them, and eventually shift your focus to the things that you can change.

As for me, my trachea has had trouble healing since the transplant. I've experienced the rare side effect of tracheal stenosis, or closing of the throat due to scar tissue build-up. It was frustrating and terrifying not being able to breathe again - especially with so many expectations of the new lungs. My lungs are so clear and strong! It's my trachea that is now the problem. Once again, every breath was a struggle. The doctors tried three different stent placements to hold the trachea open - each one larger than the last - but they didn't work. So eventually I had to go back to Cleveland Clinic for a tracheostomy. I remember lying on the operation table, watching the anesthesiologist hook a syringe to my IV, knowing that sleep was seconds away, and my head was shouting: "I DON'T WANT THIS. I DON'T WANT THIS." But I needed it, and everything moved forward quickly, and when I woke up, the stoma had been successfully inserted through my neck. I couldn't talk for a month, but I regained my voice once they switched to a smaller tube.

I still feel beautiful. I go about my day with normalcy. People stare at it when I leave it exposed - clothes that cover it are irritating, and sometimes scarves are just too hot. I don't remember it's there until others point it out, with pity, asking, "When do you get it out?" Some people are fixated on that question. I am pretty sure the answer is never; but I don't tell them that. 

"Soon," I say. "Depends on how the next appointment goes." If they knew the exhausting suffocation I experienced before the trach was put it, they would know that in comparison, I don't mind having this thing in my neck.

I'm not going to pretend I didn't have a period of grief with the trach - not just for the memories that resurfaced by being back in the ICU, or for the new changes I would have to work into my life, or the fact that I couldn't swim or do certain things, but for the fact that my post-transplant expectations that things would get progressively better without any setbacks was given a wake-up call. Yes, things do get better, but that doesn't mean complications won't arise. 

Eventually, I confronted the facts and accepted the situation. The trach is part of my life, part of who I am to the world and part of my beauty, and that's not the end of the world. It would be ridiculous to hold onto sadness - there is too much joy I would miss if I did that.

Every so often my transplant meds send me in a downward spiral of dehydration, exhaustion, and - in effect - depression. Sometimes my prograf levels are just too high, or maybe it's the change in weather, or trouble breathing with my tracheotomy tube, or being overworked, but somehow I get to this point where it's difficult to do anything. Then I start hating myself for not using each day to the fullest. Anyone living with chronic illness, especially cystic fibrosis, can relate to this.

My transplant center says this happens to a lot of patients, and the best way to beat exhaustion is to get up and work out, or just do something, anything. Which seems a bit counter-intuitive. It becomes a physical and mental feat to pull yourself out of bed, let alone go to the gym.

I can't totally pinpoint the sole cause of my latest "funk." People at my second part-time job being rude, not having enough to do at work - or feeling stuck because there's too much to do at home, stress, and feeling like I'm in this professional rut where I'm not moving forward as fast as I want to. My med levels are high and it makes my feet burn, it's hard to breathe at night so I'm not sleeping well, the weather keeps shifting from humid hot to low 50's...the laundry list of sorry-for-myself is unending, and it will continue to be that way until I remember that sometimes depression makes the laundry list longer than it has to be. It can add shadows in your life where there aren't any. It can fill you with this inward hatred of yourself that makes the world seem hostile and unforgiving of your flaws. It can prompt bad eating habits and health habits that only exacerbate the problem, and it can cause you to focus only on the physical pain and exhaustion of your disease. It compounds every misery you've ever felt.

My transplant center is right, though. To beat the funk, you have to stand up to it, and man, it's a beast to be reckoned with before it destroys you and the relationships you've cultivated your whole life. The past couple weeks, I've slipped into negative schisms, believing sincerely that I'm unlikable and incapable, and that the physical pains were insurmountable. All the while, I knew deep down that I was wrong, that things aren't as bad as they seem, and I will pull through this. After all, I'm going on my honeymoon in two weeks with my wonderful husband, and there are so many things to look forward to in my career and life - yes, depression can make beautiful things seem insignificant, even when they are far from that.

Today, I let myself sleep in. I made a concerted effort not to berate myself for doing that. I trusted my body to tell me when it's time to wake up. I turned on my favorite music on my living room speakers, cooked organic eggs for breakfast, and drank "revitalization tea" - whatever that is. I did yoga and played with my dogs. Over time and practice, I've learned that these are the things that make me happy, or at least calm me. I'm coming back to avoiding those negative schisms - "I'm the worst, What's wrong with me, I'm a failure, No one likes me, This pain won't end...etc." - to redirecting myself. This doesn't always mean thinking self-loving things, though that's a good place to strive for. It simply means thinking productive things, like, "I did well today. I ate healthy and worked out. I don't need to load on expectations of myself this weekend; I just need to take it one step at a time and do what feels right."

So to anyone else with chronic illness, remember this: slow changes are OK. My family always jokes about taking "Baby steps." Yoga and tea will not cure you or suddenly make everything better, but finding something good you can fall back to in order to motivate yourself out of bed is a good start. Do away with the bad schisms - those thoughts you default to over and over when things aren't good. Recalibrate. Redirect yourself to the good news and recognize when you're thinking implausible things. Scale back your expectations and let them regrow. Then congratulate yourself on each baby step.