The Ravine

Sometimes life is overwhelming. You look around and all you see is bleak. It's like the darkness is creeping in from every edge, every corner, every side. You feel like you have nowhere to go. Nowhere to escape to. 

What can you do? 

Where can you go? 

Where is your escape?

Along time ago, in a land far away, a teenage girl and her little brother had a really bad fight. He ran off and she couldn't find him. She looked and looked for him because she wanted to tell him something before she moved away. She was leaving - moving off to college. She didn't want to leave without saying what she really felt in her heart. Now, they had bad feelings, arguments, and unspoken words between them.  But, the little brother hid very well. He played outside often, and knew all the hiding holes everywhere and he knew exactly where to go where she couldn't find him. But, she persisted and persisted and finally late into the evening she found him in The Ravine.

"What are you doing in here," she said. "It's dark, and the mosquitoes are bad down here. What if you slip and fall? You could hurt yourself."

"I'm hiding," he said simply. This statement was profound, and and she thought somehow he meant it to be so.

She could see him there in the dark, sitting on a large dead tree that had fallen across The Ravine, his bare legs dangling across the bare space. Fear struck her heart. 

She was so often afraid of things - afraid of hurting herself, afraid of getting sick, afraid of others hurting themselves, afraid of others getting sick, afraid of death. Fear, fear, fear - always there hiding in the background. Her Constant Companion.

And yet, she could see him there - that little boy, her brother - he had no fear. Or, it seemed to be so there sitting in the dark in The Ravine. She also knew that the words that she needed to say to him would require action. She would need to crawl there beside him in the dark, her legs also dangling across that bare space. This against her fear - that was what needed to be done. And so she went.

That seems so long ago now, this teenage girl and her little brother. The discovery of the fallen tree and The Ravine. A great lesson was learned there that day. It stands still. I remember it sometimes when I need to.

When life is so overwhelming and dark and bleak and it feels like the darkness is creeping in from all sides and the fear is so great that you can barely stand....

It feels like it's going to burst even from your own rib cage...

Out of your own being...

Out of your own heart... 

What can you do?

Where can you go?

It is then that I crawl through the dark, crawl through the mosquitoes, and the leaves and dirt and the moss and the sliminess until I find my broken down tree - and then I sit there in the silence of My Ravine.  

 And then in that silence that is not really silence, I realize that the fear is not so overwhelming, the darkness that is crawling in from the corners is really just a shadow of my own heart, and I am able to refocus and ready myself for another day in this amazing, crazy, terrible world.

Little Moments (A Letter To My Fellow Patients)

Many other patients have asked me what it's been like after my transplant.  I think they, having some kind of stereotypical image, think that every patient has had some kind of transcendental experience. How do I know this? I was one of them. So I'm going to give you some advice. The advice that I wish that I would've had.

After transplant, it's not going to be easy. You're going to have some really bad days. Some days you're even going to wonder "Why do I have to be me?" You're going to have some days where you wish you were somebody else. Frankly, you might even have some days where you wish had never done your surgery in the first place. It's just going to happen. This is not being unappreciative, it's just natural due to the incredible stress you are under.  It's going to be hard for you to come to terms with the fact that the stereotypical image of the transplant patient that you had in your mind does not exist. But, that's why they call it a stereotype. You are an individual, and you're going to deal with this process in your own way.

Now, on the other hand, you're going to have wonderful, beautiful, amazing moments where you're going to be so happy that you're still here to be with your family and your friends. They're not going to be transcendent, per say. They're not going to be obvious. They're not going to be the stereotypical moments that perhaps you had imagined in your mind - climbing Mount Everest or running a triathlon or coming up with some amazing medical invention that saves millions of lives. But, all of a sudden it's going to hit you that without your transplant you would not have been there to share in that little memory. Hold onto that, my friend. 

I don't know what it's going to be for you.  I do know what it was for me. Seeing my niece being born. Hearing my nephew learn my name. Having tea parties with my best friends kids. Planning renovations on my house with my husband and seeing them come to completion. Attending all three days of the Bible convention that I hadn't been able to go to for two years because of my illness. Doing art projects with my mom. Being able to do volunteer ministry work again in the area that I love with my friends. Little, tiny moments that are not obvious to any other person but you.  However, when you really sit down and think about it, those are the moments that you would not have been able to be there for without all the hardship you will go through with your transplant. 

So here's my suggestion. Make a list of your events and memories. Or make a folder on your phone with all the photos of little memories that you have of good times. Whatever it is that you can do that works for you to keep track of all the tiny victories that you have had. 

Subsequently, when you're having a really ugly, bad day, and you're thinking to yourself, "I don't know why I did this...," you can go and look over your list or look over your photos and you can remind yourself "this is why." This is why it's all worth it. And you can reinvigorate yourself to take another step forward. Step over the mountain and keep going another day. 

And that my friends is being a transplant patient. Because you're not just living for yourself but you're living for others. 

And that's what I wish I had realized from the very beginning and that's what I wish to pass along to you.

Well, I Used to Like Onion Soup...

One of the big things I have had to deal with since my bilateral lung transplant a little over a year ago is dealing with my new transplant body.  There are so many new and different things going on in there, it's often hard to keep track of it all.  Some are awesome (lungs breathing air, for example). Some are not so awesome (almost an infinite supply of random pains I never knew I could ever even  have).

Anyone that knows me knows that I like to over plan and over analyze, and that I don't react well to changes. Needless to say, finding out that your whole body system has literally changed overnight can be quite jarring.  

So, I decided I needed a plan. I was going to figure things out. I was going to sort out all of my new idiosyncrasies until I had everything tied up nicely, just like it used to be.

And it was. 

That was, until I was at a restaurant, holding a menu, and staring blankly at the waitress.  

I just couldn't decide. Which foods were even safe to eat? All my food safety rules were repeating in my brain. More questions were quickly flooding in, one after another. I didn't know what would be OK in my stomach, or which items would make me nauseated later. Would I like the taste, or would it taste like metal? When they presented the food to me, would the smell alone make me hate it? I didn't know which foods I liked to eat anymore, not really. Do I like French Onion Soup? I used to...

 "No, I don't know what I want! Yes, I need another minute!" Grr...

Food, however, is not the only change.  Shopping for clothes is another disaster. Truth be told, getting dressed every morning alone is itself a disaster. The body I had had for years, and had been used to dressing for years, is now very different. All the clothes I loved and felt comfortable in had to go. Things are tight where they should be loose (thank you steroid belly!) and loose where they should be tight (hello clamshell incision!). It's like starting over from scratch. And for a person who is already facing body insecurity (raise your right hand if you're a woman), having to deal with a completely morphing body is a little bit like going to sleep a kangaroo and waking up a cricket - you can still hop, but you know something's just not quite right. But, you just go ahead and hop along, cause that's what you gotta do. You're a cricket, after all.

And then of course there's all my new "sensitivities." Food sensitivities. Drug sensitivities. Chemical sensitivities. Fragrance sensitivities. Sensitivity to the sun. Sensitivities to this sentence.

Seriously though, since my surgery, my new transplant body has decided to become sensitive to so many products and items that I previously loved, and therefore had to stop using immediately or even throw away.  My friends and family have inherited some really nice products this past year though, so good for them! However, it is difficult when you're standing in the Walgreen's shampoo aisle for thirty minutes with your eyes glazed over, wondering if people around you think you've finally gone off the deep end.  It took a trip to the dermatologist to finally clear up everything on that front!

My new transplant body also doesn't have the right sensations. In the places where I should feel, like my fingertips for example, I don't. In other places, where I would rather not feel as much, the bottom of my feet perhaps, it's too much, to the point of having the sensation of walking on fire. I recently got a splinter in my big toe - oh my! I won't tell you what descriptive language I was wanting to use about that fiasco. (However, I did learn not to walk about on my porch without shoes, so lesson a valuable learned). I'm cold when everyone else is warm. And when everyone else is freezing, I'm burning lava hot! I'm so happy I can control the thermostat in our house from my phone. Which probably explains why everyone else is freezing... "Maniacal laugh, maniacal laugh."

My inclination to figure out my new life immediately hasn't worked out. I'm over a year out now, and I'm still trying to make sense of my diet, but everyday is progress toward a happy belly. Also, I find that Sarburst SuperFruit candy fixes just about anything that ails you.  I've purchased a few items of clothing that have made me feel better about my new self, and Pinterest has helped me realize that my body shape has gone from "pear" to "lean." They have some really great tips for dressing shapeless bodies on there! And I followed the advice of my doctors and WedMD about what to do about my sensitivities, and have found some relief. (No, not WebMD. Just kidding. Never take WebMD's advice about anything!)

Other than these very practical (and unpractical) ways, I also have found that the following things have helped, and may help you too.

Don't Sweat The Small Stuff

As cliché as it sounds, if you have had major surgery or illness, especially transplant, your body is going to go through massive changes due to medications and the general healing process.  Stressing over every little thing that is going on with you is going to effect how you heal, and also aggravate your situation. Let alone, make you feel worse overall! So, even though it will be hard, try and not focus on small problems. Let them pass. 

Allow Yourself to Laugh

Frankly, illness, surgery, transplant- it's tough! All these changes, the whole process, it's probably the most difficult thing you'll ever have to do. It may even be embarrassing at times. But, if you allow yourself to see the humor in things, and let yourself laugh, even if it's at yourself, things won't feel as dreary, even when they are. "Laughter is the best medicine." So, so true. And important. 

Rely On Others

When you think you don't recognize yourself anymore, someone else still does. Your spouse, your parents, your best friend.  When you need help figuring out an identity problem, even if it's as simple as what you want for lunch, rely on others. Your family and friends are there for you because they love you. Use them as a resource.  You'll be glad you did.

And When All Else Fails... Cry
Yeah, I said it. Cry! Why not? Who says crying is weakness? Whoever started that rumor obviously has never tried it because I'm telling you what - it feels great! Sometimes, you just got to get the inside out. And sometimes the only way that's going to happen is to cry. Cry, cry, cry and cry some more.  And afterwards, you'll feel better. You can pick yourself up, put your plan back into place, and try again.  Take it from a newborn, recovered repressed crier, it really can help.  Covering over how you really feel, and faking it for others all the time, even in front of those closest to you, will not help. It will only make you feel more frustrated about what is going on.  So let loose! Cry a little. Or a lot.

So, in conclusion, what have I learned about my new transplant body? I HATE ONIONS. I hate them. They are disgusting nastinesss. I do not like the way they smell, taste, and they make me so nauseated when I eat them that I pretty much want to die.  One thing down, about a million to go.  

March 6, 2015 - March 6, 2016

Since the day I had my transplant I've had many conversations with other patients who were past their one year date and what it felt like to be at that point. What it was like to be celebrating finally being over that infamous one year hump. They all have different stories to tell, about how that first year went, but it ultimately came down to the same singularity - appreciation.  And outside that overwhelming appreciation for an extra year of life that was unexpected, each patient expressed differing feelings and emotions.

Of course, I couldn't imagine what it would feel like to be one of them now.

So, here I sit, on the morning of my "lungiversary."  This is my one year anniversary of my double lung transplant. One year ago today, I began "a second life."  I was given a chance to live; to be a part of my family and my friends lives longer than we expected.  

When I think of everything that transpired on this day, one year ago, I am in awe.  Sometimes it overwhelms me to really think about everything that had to come together to make it work. 

Because of someone else's decision to be an organ donor, a selfless final act of kindness, my hardworking transplant team found perfectly matched lungs for me, with no time to spare.  My surgical team was amazingly skilled and performed a unsurpassed bloodless transplant, with very little complications.  You cannot find better or more skilled professionals anywhere else in the world.  These are amazing people, and it shows that they love what they do.  I view many of them not just as my nurses or doctors or medical professionals, but my friends.  

My family and friends were there every step of the way.  They never left me, never let me feel abandoned.  There were times that medications or sickness made me someone who I was not, but this still did not deter them.  Something as big and scary as transplant scares a  lot of people off, but I am surrounded by those made of stronger materials, and this process showed me that.  There are no words, or in fact any actions either, that will ever be able to show my family and friends what it means to me that they stayed with me through this difficult year. But, I know that they all know how special each of them are to me, and that I love them all so very dearly.

When I look back on this year, I feel as if I lived five years.   Maybe longer.  If I'm truly honest with myself, I feel like I've lived a decade of tragedies and hardships.  However, I've also lived a decade of victories and moments of elation. Talk about mixed emotions. When they say the first year of transplant is arduous, it's true.   But, if I do serious self-evaluation, I must also admit to myself that I am equally triumphant.  

I think because I haven't been able to climb a mountain, or run a marathon, or reach any of the other characteristically unrealistic goals I set for myself in the beginning, that I had failed at being a successful transplant patient.  I was comparing myself to other people, and that just doesn't work.  I have had a rough year.  I'm not in a condition to run yet.  (Who am I kidding, I will never run. Let's just clear that up right here.)  But, I will get to a point where I can do the things I have set out for myself. It will just take me a little bit longer to get that far.  And that's OK.  I need to let myself feel like it's OK to go at my own pace, and not feel I have to meet some preconceived formula of expectations.  Slow is fine, as long as you're still trying to move.

In the meantime, on my one year anniversary, I'm reevaluating.  I'm looking back over all of the tragedy/victory over the last year.  Which one won over? And what does that mean for me moving forward?

I choose to think that my successes, however small, will always trump my failures.  Therefore, I will win every time.  Moving forward, I choose to make this next year even better than the last. This will honor the sacrifices that everyone has made on my behalf - my donor, my family, my friends, my transplant team.

I may climb a mountain someday.  But, no running. please.  I don't run.