“Patience and Fortitude Conquer All Things”

A quote by Ralf Waldo Emerson.

A lot of Emerson’s well known quotes sing of self-reliance, growth through hard times and, in laymen’s terms: growing through what you’re going through and maybe it’s the love of writing in me or the familure tones of facing things many my age won’t in a lifetime but I often find myself reading bits and pieces of Emerson’s writings whenever I need a little reminder of where I’ve been and what I still have to go.

As some, likely many of you at this point already know: part of what makes Leafy so important to me is how much access to this amazing produce we grow has been a part of my own personal journey. So when it comes to bringing our salad greens, herbs, and seasonal produce to our community it is from a place of love and a personal understanding of the importance of access to good quality food.

Every step of what brought` Leafy into our lives, and really every step that brought Nick into my life, as stated in the broadest, most laughable, still rather confusing, understated way possible, was and still is a bit of a doozy and for the most part (emphasis on the “most”) I wouldn’t have it any other way. As I stand here today, holding my breath again, for a little bit of luck and a lot more fight; I cant imagine anywhere else I would rahter be. To me that might just be the biggest accomplishment any of us can hope for. Before my rambling gets away from me, I know many have seen a go fund me floating around facebook for my husband and I as he hods my hand while we face another bout of an unwelcome illness and at some point, hopefully in the near future another kidney transplant. I have told my story before in bits and pieces but I am trying to to focus this round, on the good that has come out of this nightmare rather than this silent illness that has creeped its way into every aspect of my life once again.

I’ve now written, deleted, and rewritten this so many times it’s starting to make my head spin. This is the story I have been living on and off for the last 18 years, it’s the dream that I keep waking up from only to fall right back into the same scene day after day. It’s a story that, Im just tired of telling, tired of reliving, and tired of the monotony of being a varying level of sick. I’m just tired of being tired.

Before you come for me for complaining about being “tired”; this is a tired that comes from getting enough sleep for a few days, this is a tired that is all consuming, dizzy, your body feels like it weights a million pounds and this is a tired that you will not understand unless you do andI truly hope that none of you ever experience the level of tired that I am tired of.

I am stubborn, outspoken, opinionated, frustratingly willing to die on any hill once I’ve decided to dig my toes in, protective, curious, sometimes a little insightful and I always try to do the right thing, even, maybe especially, when the right thing feels impossibly hard. I get things wrong just as often as I get things right but I don’t make a habit of giving up and I try to keep a habit of saying I’m sorry whenever its called for. I tell people how I feel about them, I tell all of my friends and family and friends who are now family that I love them and how special I think they are whenever I have the chance. I would rather apologize first even if I don’t think Ive done anything wrong during an argument than go to bed angry. A lot of these characteristics come, or were further developed anyway due to being sick for so long. When I knew I wanted to marry Nick, I was ready to marry Nick. There is always an excuse not to do something, but life is just too damn short to watch it go by with excuses rather than moments. When it comes to the things we look back on many years from now, we will not regret the things we risked it all for, or the things we did out of order because those are things that set our souls on fire. You will only regret the things you didn’t do. The chances you knew you shouldn’t have risked, the possible life changing moment that although you felt it right there, you just walked by, or waited too long, or let something get in the way. You wont regret extra kisses from the love of your life, you wont regret that dream that blew up in your face because you still chased it. You wont regret being late to work, or leaving a job, or taking a chance, or telling someone you need them. When it’s all said and done, it will be the pride, and the silence, and you’re foolish belief in time that you will regret . It’s the people, the moments, the memories, those are the things that will bring you your peace. Those are the pieces of your life that will carry you through your dreams.

I value honesty, loyalty, and any and all open and creative minds. I love to be outside, I love to grow, everything. I love to create and I love this little life my amazing husband, Nick and I have been building together over the past few years. I am high energy, constantly stirring up new ideas and bigger dreams of what we could hope to build with our lives. I believe that sometimes the universe can be a furious shade of cruel and I believe that sometimes, maybe more than anyone of us would like to admit, the universe can get everything single detail exactly right. But I think it’s up to us to decide how to see it.

I also believe that whatever our battle, if nothing else we experience these challenges for what they are worth and whenever possible we try to learn from those experiences; good, bad or, ugly. Being sick sculpted a clearer view of the world than the one I use to see. Many things still feel familiar but there is a a heightened sense of obligation, of fight to live my life a little bit louder, to love little bit harder, to forgive a little motor often, and to experience as many infectious smiles, bursts of laugher, hugs, secrets, fleeting moments and every other bit of magic I can squeeze out of this life.

I dont understand the amount of cruelty in our world. I dont understand how any human can look at another human and see hate for something as simple, and unavoidable as a shade or a gender or what side of an invisible line they were born on. Mainly, I jut dont understand how anyone can carry so much anger and pain to think that those are the things that matter. Life is hard to some varying degree or another. Everyone will face illness or trauma or heartbreak at some point and others will face lack of food, the inability to get get medical care, a safe education.. why aren’t we all just trying to create a wold of inclusion so that our children and their children can can try and see things through a new lense. I have never been in a group of people where any two of them were exactly the same. I have never challenged my peers using their differences to create a bigger and braver new idea and wished I hadn’t. When there are people who dont know where the next meal is coming from, and people who go to bed questioning if they will see another tomorrow, how are these completely useless adjectives the things that so many people find to use as kindling for more pain and more anger and why are those the things people are looking for in the first place; what good is it doing anyone.

I think that deep down we all want the same things. I think that we all believe in something, we all dream about something, we all love someone we all have something in us that makes us truly who we are. We have never liked back and white, we have always wanted to see our lives through vibrant color. We tired of things that bore us, we all get bored once in a while. If we remove everything that sets us apart from everyone else and live in some muted perfectly semetrical version of reality what would we ever find to inspire us and what a waste. All of the beautiful things that come from life’s messiest moments gone with the wave of a hand? Count me out. I will take chaos over cardboard every single time because as scary as chaos can seem while you’re in the middle of it, the outcome is always so much more beautiful than any size of storm you face while in the midst of it.

My storm shattered inside of me like thunder. Stage 4 Chronic Kidney Disease of an unknown origin, almost 20 years later and I still have never heard a true diagnosis, there was never any form of explination as to why, at 20, in an otherwise very healthy human, my kidneys were just failing, they weren’t starting to fail, they were roughly 75% scar tissue. The thing about kidney disease is that it is completely cureable when caught and treated even half way early. The biggest problem is that by the time you’re showing symptoms it’s usually already too late. This wasn’t something that just happened to me, it happened to more people that I care to google right now. When I was growing up anyway, having a renal (kidney panel) drawn just wasn’t something that was done, ever, unless they had a reason to. Nothing much there has changed today. I found out in November that my kidneys were loosing function and they were doing it quickly. Before Christmas I was referred to the local transplant hospital and that news hit me like a split wooden bat cracking me in the back of the head. My previous doctors told me they were expecting this and that I shouldn’t stress. There was so much stress. I am still angry. I was not expecting this. I was not warned that this was the fate my transplant team assumed would be mine. This was not part of our pans. So just this past week I went through yet another kidney transplant evaluation.

But lets quickly take a step back to December of 2020 when at 32, about a decade after I was told I would never be able to make it to without a transplant, I had my first one. After months of dialysis helping to strengthen my heart who got pretty badly beat up by the toxicity levels that had built up in my body, countless nights of tears, and countless days of floating through some terrible, numbing, time in my life that I’m actually extremely grateful that I dont remember more of than I do. I got that call at 5am and I felt something for the first time in what felt like a very, very long time. I was excited, I was over the moon! I still don’t remember the last time I had smiled like that before I got that call. That was the call that was going to change my life, it was my second chance, it is what so many people spend years and years waiting for. In that moment, for me, it was over. No more machines, no more constant medicine making me crazy sick (HA!) It meant the end of dialysis which to me, left like the beginning of life. It made my life worth dreaming about again. It made me want to dream about the future again.

It was beautiful in very way and then ended up being another unexpected blow that once again knocked all of the air out of my chest.

You know how people say that you don’t really know how bad you feel until you feel good?

When I woke up a few days later in 2021, I felt like Wonder Woman.

This is not an exaggeration. I felt awake for the first time in a decade, I could feel the sharpness of my mind come back with a snap, I could feel the energy literally pulsing through me. I wanted to run, dance, skip, anything I could do, anyway I could move, I just wanted to let the energy run through me for as long as I could. I felt strength in my arms and my legs again, I felt like I was living in full color after spending a life time in black and white. I left like me, I didnt even realize how much of myself was buried benieth my illness. But when everything clicked again, the shell of the muted girl that had been somewhat living my life shattered and someone who had been hiding just under the surface , quietly waiting the in the background just to feel the sun on her face came shrieking out of the shadows with a determination to remove any and every obsitical in her way.

I found my way back to words. I found my voice singing along to the radio, I forgot how much I liked to sing, I forgot how much I love the way words fall together to create a picture that can then dance in the deepest parts of your mind, I forgot the weight that words can carry and the fire they can light inside of you. I remembered how good a hug can feel. Over time, I remembered to let someone else in. I got to remember how perfect it can be, dancing in the living room, resting your head on your least expected best friends shoulder and how easily you can become mezmorized while bonding over the amazing music we both grew up listening to. Songs that I loved that I never expected to hear coming out of someone else’s stereo. Some of the first words that showed me just how much words and a little melody can change everything about a moment and watching them change someone else’s moment too.

I remembered love, and then fell in love for real for the first time. I remembered the beauty in gratitude. I remembered to thank my body for every memory and every movement it brought back to me and in so many ways becoming healthy helped me fall in love with me again. To treasure the battles I’ve faced and think of them more as medals of honor and battlers survived and never as a letter of defete.

Life can come so close to breaking us, it can push us to the brink it can leave us bruised and bloody and questioning everything we thought we knew about ourselves, our lives, and the people we have thought would be there forever. Life will chew you up and spit you back out on the cold pavement blindfolded with both hands tied around your back. It will take the thing you have relied on the most and it will show you that things are rarely as they seem. Life will force into independence and in the same breathe show you in embarrassing accuracy why no one can go through life alone. It will taunt you with masterful elegance and it will always show you a mirror when you need to be looked square in the face. It will kick you when you’re down and then slide over an arm to pick you back up. The sense of humor the universe holds up its sleeve will seem dark and close to dangerous if you forget to take it with a grain of salt.

Because at the end of the day life really is, nothing ,except for what you make it. So why are we always making it harder on one another when all it ever leads to is making it harder on ourselves?

Looking backwards and forward today, as scared as I am to be facing these familure but haunting roads again, another major surgery, more days living a little more muted before I get there, the risks of yet another major surgery, this trip is just so much different than the last. Higher risks, more on the line, probably a slightly harder recovery, and the added fear of “will it fail again?” Will I fail again? Running from the possibility of mortality isn’t possible when your life hangs in the balance of holding on to dwindeling function of any key componate to life. You cant pretend everything is completely fine when the days where sleep is your only ally multiplies week by week. I cannot sit here and tell you that I am not scared to do this again.

But I have learned so many things since the first time. The 5 years I have had on this side mission have helped me step into a life that means everything to me. Was it the illness, the recovery, was it just little one me, taking a really deap breath and grabbing onto life with everything I had left?

I dont know if it was all of the moments or just a a perfect select few that molded me into the woman walking these roads today so far from the girl that had to blindly navigate them not so long ago, but armed with stubbornness that cannot be matched, the love of an ever expanding world she thought she that knew, or the hand steadily there to guide me when I inevitably get a little carried away,. Perhaps the pure excitement for all of the memories I am yet to make or the refusal to accept a mediocre life when there is still so much to do. Maybe it is just my refusal to stop dreaming. But I tasted how sweet dreaming can be and I have watched my dreams come to life around me and no matter the clouds that chase me, I have come too far to let anything take those dreams away from me.

In illness we may find frailty or we may find fortitude. We will likely find quit a bit of both, but one can always tern the tides of the other and fortitude is nothing more than a perfect building block.

Life is always going to be a little too sweet, and a little too salty.

But with compassion, creativity and a little bit of courage life is beautiful and willing to give you anything that you are willing to take. We make our lives harder by comparing ourselves to other people, buying into trends that will disappear as quickly as they came in, breaking promises and being silenced by nonsensical things such as pride. When they are mearly place holders we use while searching for the main act. A distraction keeping you just outside of that leap you’re still just a little too afraid to take.

You can find me on the outside of the lines you malticulously try to scribble inside. I will be the one taunting you to bring the color just outside of the lines. I will be the one cheering you on through the flush of embarrassment you keep trying to hide and I will be the gentle push when your feet get stuck on a hill that you must jump off.

Yes I am scared. I know the darkness that can be found in disease, It’s a chill that once experienced you just cant seem to unsee. Suddenly there is uncertainty in almost everything and there might even be days where you can see the snarl of incincerty on the outskirts of your favorite persons face. Life can be a constant chore you must manage or it can slide into a smooth 12- bar if you remember your dancing shoes. If the narrative scares you, pick up a pen and change it. Light the whole book on fire and pick up the melody instead. Find the things that light your soul on fire and dance in the rain and let it wash away every last drop of pain. Remember that healing must come before growing because thats how you bloom.

In this life you might just catch a glimpse of me chasing the dreams you are still seeking the courage to think. For as long as there is air in my lungs and a skip from my feet and any melody for me to sing. With arms to wrapped around me should I become too weak and people to remind my cheeks the importance of dimples and smiles full of crooked teeth. Someone to dance with when I loose track of the beat and someone who can hear your secrets no matter how quietly you speak. There will be good times and bad times, There will be as many scars as picture perfect memories. There will be lessons to learn if you open your eyes and if we can all see that perfect wouldn’t be spectacular if there went also eyes sunken in defete.

The good without the bad, would be nothing. Illness can become a pretty tight cage. You can feel sheltered and alone. Even with the strongest hands guiding you these are the battles that test you to the bone. These are things in life that can break you if you let them.

This illness came close a few times over the years. But I am still standing, and I am stronger and more resilient than ever before. Add that paired with the people I get to love, helps me see that even the scariest days have little rays of sunshine, so this time I am choosing to dance in those rahter than hide in the shadows. We all our battles, this one is mine but I am full of fight and still very full of life.

To those who choose to donate to the Go Fund Me created by our dear friend Lydia thank you. Your generocorty means so much to us. The kind words and well wishes you have sent have been little lights that have helped me feel stronger. From the bottom of my heart, thank you for taking the time to read this. I know it isn’t your traditional back-story but at least for me, these thoughts are more important than more details of an illness I’ve been talking about for half of my life. Nick is currently undergoing testing to be my living donor. We have a long way to go, but my perfect guy just so happens to once again be my perfect match. So with a little more luck, we might just get to the other side of this unscathed. Your support truly means everything to us.

If you or someone you know is interested in donating life to someone like me please reach out. Nick or I can get you in touch with the people who make all of this possible.

Thank for listening, and as always

Stay Leafy Friends.

With all my love,

Amy.