There are some people in this world who, without even trying, alter the course of your life forever, bringing music and colors you otherwise would never have known.
For the good, or for the bad, and perhaps our perception of the shades inbetween the two.
Patty was one of those people. I didn’t know it at the time, and I certainly didn’t expect it, but in a way Patty saved me.
It was dark out, all the time. A deep, heavy darkness that had no form and held no life. It watched me, and I watched it. I saw it when I woke and when I lied down, and the only thing that got me up in morning was the dear beast by my side. The darkness was silent, save a few chilling words it whispered in my ear, “I am all things, and there is no light”
I heard these words often, and peering into the dark nothingness that whispered them, I saw all that broke my heart. The man who took my love and trust and wrecked it. Who twisted and bruised, and threw and tore. Again and again amidst hollow words and torment, until I could no longer breath.
And so I ran.
I ran and ran until I couldn’t feel his hands clawing at my heels and I knew I was free from the ropes that bound me.
In the darkness I also saw the podium people who thrust their judgement and cruel eyes towards me, proclaiming threats of demise to the bleeding heart on the side of the road, quoting from a God I didn’t know.
So I ran from them too.
And one night, I ran right into Patty. I think Bear led me there, I know of no other way this should have ever happened.
The darkness was especially strong that night, and all I wanted to do was hide from it.
Whatever that took.
My beast, however, had other plans. Whether he saw the darkness too and was simply too dumb to recognize it, I’ll never know. Maybe he was drawing me out of it. All I know is that night, he was adamant that we go somewhere, and so we did.
Driving with no destination in mind, I watched his slobbery head hanging out the window from the rear view mirror, he was smiling.
Where we found ourselves was near a park with a winding creek running through it. I used to go there as a child to collect tadpoles so I could watch them turn into frogs.
I brought the beast out of the car and we began walking down the path I used to know. As I turned a corner a saw a pack of dogs, the happiest lot of dogs I’ve ever seen. They were all smiling…….. Not just the people, the dogs.
And before I could blink, they were upon me. All of them- people and dogs alike, swarming me with pup kisses and smiles and pull-toys. It was as if they recognized me from another time and place, even seemed to be waiting for Bear and I to arrive.
And at the heart of this band of merry men and their pups stood one sweet soul. Patty. This was her group, colored by her kindness and unconditional love for every living being she ever came upon. There was something that immediately drew me to her.
It was her light.
Could it be? Light……….. light where there was no darkness. The whole group carried it, but it was Patty from whom it shone the brightest.
From that point forward I made it to the end of the day so I could go find Patty and the pack. To breathe the air with them and let our beasts do the same. They didn’t know where I had come from, and they didn’t care. They took me in as if Bear and I were long overdue and wouldn’t take no for an answer. They didn’t point, they didn’t judge, they didn’t even ask. They just loved me, and in that moment my life course was changed forever. The darkness had a hole, and light was there.
They didn’t know, didn’t realize that the darkness had been so close, it almost took me. They never knew they saved me.
That place and those people and their beasts became a haven I’ve never known before and will likely never know again. A place I could hide in but still exist, a place of belonging and love that had no limit.
Seven years later I still find them there and we walk along the creek where I was carried for a while. I cannot look at that water and those green trees and wonder if light and love exist. It is undeniable and it is unstoppable.
Yesterday, Patty left us and I had to say goodbye for the last time. After 30 years she packed up her family to travel across country and love more souls like mine elsewhere, no doubt. I tried my best amidst my tears to convey what she had done for me, to say without saying what she already knew. “don’t worry sweetheart” she said, “My love for you all will never change, and I will carry you in my heart forever, no matter where I go”
And I believe her. She loved me at my worst and swept light into a soul being pulled into the shadows. That sort of light and love lives forever.
Sweet Patty, you will be missed. Human or angel I may never know.
I’ve only ever met one person in my life who isn’t crazy about In-N-Out, and that person happens to be my own mother. I’ve her leave half a burger un-eaten before.
HALF A BURGER
I really don’t have an answer for her other than the fact that she also fancies cilantro, which obviously indicates some serious defect in her tastebuds.
But really, what is it about that place? I’ve done my best to figure out makes it so damn addictive, but have failed miserably time and time again. I’ve tried it without the sauce, with and without onions, protein style, animal style, no meat, no cheese, with a cherry on top.
Doesn’t matter, it’s all the same. Enslaving appeal that will be satiated by nothing but itself.
And so, I’ve come to the only logical conclusion left to have. The burgers are loaded with drugs, and Mike and I go get our fix every Saturday afternoon. Yes yes, In-N-Out wins again.
As much as I dislike feeling constrained in any way, I also find a certain delight in these sorts of pseudo-routines I’ve unwittingly developed over time. Weekend runs on the trail with Suj, sunday coffee with Mike and B, and occasional friday night sushi and sake at that corner place where we can watch people without them knowing it.
At least, I think they don’t know it…… perhaps they do and find us disturbingly creepy. There is an art to good people-watching, I suppose. One must know exactly when to look away before the eye is caught in the act, at which point there is no saving face. I like to think I’m good at it, but then again, you never really know with these things, do you.
Self perception is such a funny thing,
Like, when I’m running I believe myself to be invisible to the world and safe in my own secret escape, just as long as I have my sunglasses on. I’m like a child hiding behind a window.
And then I get home and see a text from a friend telling me they saw me on such-and-such street earlier, and I am all aghast and horrified, wondering how the hell this could happen.
Or when we understand our own voice a certain way, and then hear it recorded and wonder what sort of sick joke someone is playing on us because we suddenly sound like Ray Ramano.
Makes you sort of wonder what others illusions we carry around with us.
Anywho, off to get my drug-loaded double cheeseburger and fries. If you are not seriously tempted to go get some yourself, you might be delusional.
It’s been a wild ride these past few months, without much I’d like to recount (hence my absence) The baby lung is doing much better, and while I still have regular pain and likely always will, it is something I’ve learned to manage.
Then there are days like yesterday when I literally fall to pieces. I had my monthly check up with my rheumatologist to see how I’m doing on the new treatment. The long and short of it is I’m not progressing as we had hoped and it bummed me out.
I’ve had a few days recently in which I’ve felt physically incredible, which is great, but then on days like yesterday, I feel like I’ve been dropped from a high rise. I was already not feeling so hot, so to hear the medication that is making me sick is not working and they have to ‘amp it up’ made me want to give up.
So I did what I am usually able to avoid doing, and I cried in the car like a child on my drive home from the hospital. I called M and told him it was unfair, that I’m tired of fighting every day and I just want it stop. All of it. No more fevers, no more nausea, no more stabbing pain and aching joints and needing to sleep all the time. No more weekly blood checks and lying on the ground feeling my lung to see how bad it is. Do I tell him or keep it to myself until it’s bad? ER no ER? Go out and put on a smile or stay home and let it be what it is? There were no answers yesterday. Just struggle.
It was a low point, and I felt miserable for the very fact that I had succumb to it. In moments like that all I want is to escape my daily impasse, the body that is fighting itself. I’ve actually learned how to use my mind to do that a lot of the time, escape the body I mean. But on days like that, lupus just wins.
Sad and infuriating. And thats about it.
Like I said, I didn’t write this for anyone to read really, as I’m sure it’s not encouraging to anyone dealing with this shit. But it’s the truth. I don’t like putting negativity into the world, but right now it’s already there. So I’m just gonna call it what it is is.
So to all the dear souls out there whom I may not know but who resonate with this, I’m sorry. I’m sorry you deal with a body that fights you, that fights itself. I’m sorry for the hospital stays and needles and medication, and for all the times you had to plaster on a smile and force normalcy. For the nights you had to stay in even when you wanted to go out. For feeling so tired you want to give up. You are not alone, and we will win this. Somehow, even if it’s not today.
The tale I’m about to tell is, I hope, the last of it’s kind in the Saga of the Lung, a ten-year battle with a mischievous alveolus. It is the finale of my trick lung giving it’s last hurrah (fingers crossed) and taking me on a wild ride as it goes down.
Little bit of a caveat before we proceed: Some of what I am about to recount isn’t pretty and might include some triggers for individuals who have gone through similar situations. The photos are raw and real, and there will be no attempt to try and make it all sound anything but what it was, which happens to be ridiculously heinous at times.
But it’s real, it’s a part of my story, and I must tell it. The tales never told all still exist, they simply remain unread.
Friday the 16th I awake at 4-freaking AM to very sharp, familiar pain in my right lung. After three major collapses and dozens of smaller ones, I know it’s down. The next step is always my least favorite, where I go about my day hoping it will resolve but not really knowing which direction it’s headed. By the evening I know it’s time to go, and Mike drives me to urgent care.
Long story short- doc takes an xray, says he sees a collapse and sends me to the ER to get a CT scan.
Keep in mind here, CT scans are even clearer than x-rays.
I lie down to get shot- up with iodine and tell the dude with the needle, hey, I know my left arm looks like it’s got great veins, but just to warn you, it’s a pain in the ass and the vein always rolls.
The man doesn’t believe me. He pokes and pokes and finally moves to my other arm.
Man with needles: “Wow, I didn’t believe you. I have never seen such a fatty vein go so rogue.”
Sigh. Why don’t they ever believe you in there?
Now the needle is finally in, but suddenly I feel something warm running down my arm and glance over. This is a mistake. There is literally blood covering my entire arm and squirting out.
Apparently, the nifty little gadget that connects the needle to the thing that injects the iodine is a dud and has swiftly become a quick drainage system. The guy is reaching for towels and I am thinking how fortunate I am to be lying down because blood makes me woozy and, oh my, that is a lot of blood.
Man with needles, now covered in my blood: “What the heck, I have NEVER seen that happen. You’re one of those people, aren’t you? You’re in that one percent of people where the unlikely thing always happens?”
Me “Yes, I am a pain-in-the-ass anomaly.”
Finally it’s all squared away, they get the iodine in and take the scan. My lung is in excruciating pain at this point and I am trying to focus all my energy on breathing while we wait.
The next part of the story is where it gets….weird. A doctor tells me all is well, it’s not down and that there is some kind of mass on one lung I should look into.
I know something is amiss. As we walk out I turn to Mike and tell him with dead certainty, “This is a mistake…mark my words, we’ll be back here within days. My lung is down. I don’t know how thats possible, but it is”
The next few days my stubborn streak comes out to play, and I push through and ignore the pain. I am confused and bothered by it all because my body has never lied to me before, yet I see no other choice but to push through since they told me it’s ok.
Sunday morning Mike and I drive to Irvine for breast cancer 5k I’ve been looking forward to running for my mom. Running hurts more than I want to admit and I end up walking part of it. I tell myself to stop being a baby, and that nothing is wrong.
By monday morning my lung is angry. Very angry. I am afraid to look her in the eye. As a final shot in the dark, I email the one doctor I trust and ask him if he would just take a look at my CT scan. (He is the rheumatologist who sees me regularly for lupus treatment.) I really don’t know what I expect, but I go with my instincts.
I get an urgent email response from him while at work that afternoon. My lung is collapsed and I need to go back. Apparently, it was a bad read on the CT scan.
*Internal, silent swearing of all swear words.*
*External blank stare.*
I want to think they were going to call me about this little mishap, but I’m not sure. I am grateful for my rheumatologist and that my instincts are still sharp.
I go home, grab my hospital bag and kiss B goodbye, hoping to be back in a day or two. I get admitted to the hospital that night where I am monitored and treated for pain with a nice cocktail of dilauded and benadryl.
Since this is now my third major collapse recorded by their hospital, they decide it’s time for The Surgery.
In case you were wondering, The Surgery is where they go in through two major incisions on your chest and side, fully deflate your lung, cram a chest tube the width of a quarter up through your ribcage and into your chest/lung, purposefully damage the internal chest wall to create scar tissue, than glue/staple it all back up and send you on your merry way.
Sounds fun, huh?
The goal of all this is, of course, to keep it from collapsing again. They call it a VATS pleurodesis. I call it hell.
Tuesday morning my surgeon, Dr Davidson, comes in to introduce himself. He’s wearing jeans with a sports blazer and a pair of black converse. Mike says he looks like the warden from Shawshank Redemption. He shakes my hand and I can tell he doesn’t remember me, but we met before when he removed my last chest tube in June. I am pretty impressed with myself at this point for remembering more than a surgeon does while being on massive amount of drugs.
And….thats about all I remember from Tuesday. 🙂
Wednesday is surgery day. They wake me up at the crack of dawn and take me down to pre-op where I meet my anesthesiologist, Eddie. Eddie has a ponytail I can see peeking out from his surgical cap and he makes a lot of jokes. I would laugh, but I have a caffeine headache and all I can think about is coffee. Eddie is the first person who listens when I tell him Versed (the drug thats supposed to make you not care whats happening) has historically never worked for me, and he even explains why. Apparently, for a small percentage of people it has the the antithetical affect, sharpening the senses rather than dulling them. No shit. Suddenly I understand why the past few chest tube procedures have been so torturous.
Instead he gives me Fentanyl, which simply makes me feel like I had one too many drinks. It works beautifully, because as they wheel me into surgery where all the knives and needles and bright lights are, I find I don’t care- which is exactly what I wanted. I don’t even have a memory of them putting me under. The last thing I can recall is the song Kryptonite by Three Doors Down playing loudly, and one of nurses asking if I mind the music.
I don’t care, I don’t care about anything right now. I imagine I likely fall asleep with a ridiculous grin across my face.
I wake up feeling woozy with the surgeon’s hand on my shoulder and three nurses looking down at me. I am told later that I had a hard time waking up out of the anesthesia, and people were getting a bit concerned. Instead of it taking me 30 minutes to come to after surgery, it took me three hours. Surprise, surprise, you put me in my happy place, what do you expect?
After a few minutes of being awake, I notice a hose sticking out of my side. I stare at it, grateful that I didn’t have to feel it going in. The surgeon also tells me he had to remove about three inches from the top of my lung due to on-going damage. Didn’t see that coming. I feel a strange sadness at having lost a part of my body, even if it was nothing but trouble.
The rest of the day is very hazy and wonky, and I don’t remember much. My sweet sis comes to see me despite her aversion to hospitals, and at some point Suj and Justin bring me soup from Panera. I have good friends.
I should mention at this point, the goodness of the dude I married. This whole time he has been with me, holding my hand, rarely leaving my side. He knows how much I hate this, and he does what a best friend does best- he hates it too.
He brings me a stuffed frog who, for someone reason, I name Cricket. When Mike goes home for the night, Cricket is my reminder that he isn’t far.
It is now Thursday. I honesty recall very few details about today, except that I am woken up every few hours for a blood draw or intravenous drugs for the pain, which has increased to an intolerable point without them. I remember moments of watching the clock, waiting for the three hour mark when the nurse would come in to give me relief from the pain. I watch a lot of Friends and Modern Family and feel drugged most of the time. I miss Mr B and I miss feeling normal.
At some point my blood pressure and heart drops to a concerning low, and I am being monitored fairly closely for that. I try to tell them it is normally low, but perhaps it just comes out as gibberish. I notice that I have four IV’s at some point, two in each arm and two on each wrist and don’t remember how they got there.
Friday I am told I might be able to go home. I am ecstatic and do a little ‘dance’ sitting up in my hospital bed. I don’t know if I actually move, but in my head I am dancing.
They pull the hose out of my side (ouch) and stitch it up, making me feel sort of bad-ass but also kind of like Sally from the Nightmare before Christmas with all my scars and stitches. I don’t get to go home today after-all, so I order a pizza and take pictures from my window, dreaming of tomorrow’s release.
It’s Saturday, freedom at last. They discharge me from the hospital and I say goodbye to all the remarkable nurses who have been with me and are cheering me on. I apparently leave a thank you note for the surgeon, though I don’t recall writing it.
I am greeted by Mr B at the door, and we are both tickled to see each other. He notices right away something is different and is overly gentle, offering his body for me to lean on as I walk, never leaving my side.
I wish I could tell you that the next few days are wonderful and healing. They aren’t. To be completely honest, I experience some of the darkest days after I arrive home. I am not entirely sure why it is as hard as it is, but I have a few theories. First, the pain is pretty horrific. Being off the strong stuff they had me on in the hospital and putting me on Tylonel with codeine just isn’t cutting it. Secondly, I am not prepared for the amount of weakness and limitation this has caused. With a good part of my lung removed and the rest roughed up and stapled and glued, I cannot walk across the room without getting considerably winded, and suddenly I feel as if I no longer know myself. I long to run again and fear that will never again happen. I have lost about ten pounds I didn’t have to give and I feel powerless and fragile, a state I disdain in myself. And there is nothing I can do. The scars are bigger than I imagined they would be, and as I examine all of them, I count six from the past 10 years with three new ones. Something inside my spirit breaks.
I do come out of that dark place about 3 days later, and I am stronger. I am very aware that people are praying for me and that He is close. Every day I can breath a bit easier, and I am learning to manage the pain. I am off all the drugs they gave me and feel myself again….mostly. From what I understand, the pain is likely never going to go away completely, but it’s definitely bearable.
Would I do it again? Heck, I don’t know. All I know is that my right lung has gone from 99% probability of recurrent collapse to 5%. If this saves me from another dozen chest tubes, I’ll take it. I start a stronger Lupus treatment in three weeks, which I’m nervous about but hopeful will help regain my health.
And I learned something new through this ordeal, a lesson I probably would not have chosen to undertake had I been given a choice. I am not loved for my strength or ability or function. I am loved at my worst when I have nothing to give and when I feel worthless. Love is among us in the crowd if you pay attention, in the eyes of a nurse, the hand of a stranger, the kindness of a friend. And when I asked where He was through it all, He showed me their faces.
And before you get all huffy and tweaky on me, I do realize that California doesn’t have the same sort of seasons as many other places in the world, ok.
I get it. It’s different here, but beautiful in it’s own subtle way. It’s gentle in it’s reminders. SoCal is never going to scream ‘WINTER IS HERE!!!’, which I have to say, I really don’t mind. Whispers are fine by me.
As are the 75-degree Saturdays by the pool in February.
Besides that, when I say ‘seasons’ I don’t just mean the weather, thats just part of it really. Seasons signify change and growth and movement, and they never leave us long enough to remain stagnant. Weather simply reminds us that seasons exist. If the weather never changed, seasons still would I think.
Ever since I was little, I would write down all the parts of the year that I loved, giving me something to look towards and hope for on a continual basis, no matter what was happening around me. Christmas, summers by the pool, all the birds singing in the spring, the rain. It was generated from a dark time of life, which, I find, is often the soil that yields deep thought and understanding.
Darkness doesn’t always beget darkness, as the old saying goes.
Anyway, I often find myself thinking in this same sort of way on a day to day basis. What beauty can I look to today? What brings me life and joy? There is always something, you know, even in the darkest day. Sometimes it’s a bit less ‘significant’ yes, but the whole idea is that it’s not the thing itself, it’s what it represents in our minds. A larger Good that wins in the end.
If you’re sitting there wondering what the hell I’m talking about and contemplating what level of crazy I am, I can’t say I really blame you. While I am an optimist, I also have a rather dark, deeper side to me that I have and always will carry with me. It’s the part of me that knows the blackness that can live in people, it’s the scars I carry from wounds that I’ll never really forget, and it is that part of me I constantly fight to remain for and with the human race. To not withdraw into the deep dark hole of utter isolation and safety, where the only comfort comes from knowing that love, the same thing that can break my heart, is not allowed in.
After trying out that place and this, I have found the latter worth it a thousand times over. So I find the sun, I look up to the moon. I cherish the words of a friend and the memory of those I’ve lost. And I allow myself to love fully, to hope, and to live in and with the fight.
Every season helps me do that in small ways, reflecting light and life when darkness finds her way in. That beautiful siren of the night beckoning me towards a cold and lifeless prison of safety.
There is something so undone about death. I find myself searching for the resolution in my soul to something I never find, and it makes my mind tumble and my heart ache.
I walked in with her last night thinking we’d walk back out together. But that moment never came. She never left, not her body anyway. I stepped back out into the night alone, carrying only a collar covered in tears.
Once I got inside I’d never been so sure I needed to do something and so unsure of how I would do it.
After the initial sedation, it took at least a minute for her to feel it take over.
She fought it, she fought it hard.
Slowly her eyes became dreamily fixed ahead of her, as if in a trance. Ever so subtly, her head drooped lower and lower until she was resting on the blanket beneath her.
Her eyes flickered as she continued to remain with me, even though I kept telling her it was ok to let go.
But Lola was Lola until the very end. Fight. Until the end. Stand strong. Don’t give in to the pain or the struggle. Hold on. Protect. Stay with her.
And so she did. Her eyes didn’t close despite my tears and requests to let go. When the end finally came, I felt her spirit give one last attempt to stay.
And then she was gone.
Her spirit rushed out of her body like a cool breeze. Where it went I cannot say, but the change in her presence was clear. She was no longer with me on that cold floor.
Leaving her body there was so painful, an experience that left me feeling like I was being asked to leave my hand or my foot behind. I stayed as long as they’d let me and wept bitter tears into her fading brown fur, remembering our years together and the adventures I’d never forget. I knew she was gone, and all I could do was hope she understood.
Because I didn’t.
I don’t understand death. It is foreign and cold. But it is real, and it undoes me. She went into a place I’ve never fully seen. But for one brief moment I was there with her in the inbetween. The chasm between this world and the next.
I saw it, or felt it, or touched it with her. Then I was there in the room and she had stepped into that new place.
I wanted to keep her here with me. I sometimes wonder if she is. I wonder if she thinks of me, if she’s happy or wondering why I sent her away. I wonder and turn over questions in my mind again and again. But there is a gap, a lopsided-ness that nags at me and it keeps me wondering and hurting.
Because I’m still here and she isn’t. She’s in that place that seems kinder, and fuller and warmer. I want to reach out across that divide and touch her sweet face, but I can’t. And my heart can’t quite reconcile that at the moment.
You and I will meet again When we’re least expecting it One day in some far off place I will recognize your face I won’t say goodbye my friend For you and I will meet again
Life has brought so much the past year, I could easily sit down and write it all out for you in great detail. But I am not going to do that to you, mostly because it would be dreadfully sad to read, I should think. As it turns out, most of what has occurred has been rather cheerless to say the least. It has been a season of surprising sadness, which happens to be, for most of us, the most dreaded of sorts.
On the other hand, I have also been strangely comforted and filled with deep peace amidst horrific pain. As I have said many times before, it is the darkest nights when we can see the stars shine most brightly, and what is white without black to show us it is there?
I don’t mean to be cryptic with what’s been going on, I just don’t want to spend too much time fixating on the actual events, because I don’t think they themselves are ever the point. I think they are there to show us something, to remind us of what is true, both in ourselves and beyond what our eyes tell us is there. These moments of heart-wrenching sadness, they are our north star.
Watching mom lose her job last February after 17 years
The call in September telling me mom has cancer
Staying up all night watching the California fires come a street away from my brother’s home earlier this month.
Watching mom get sick, lose her hair, and sometimes her hope. Sitting next to her while she cries without the ability to fix it, to save her, or offer anything more than a hand to hold
Watching a friend I love more than the world itself go through the deepest pain I think exists in this world since the summer.
Getting the text from sister-in-law telling me their dog was killed by a coyote in their yard a week after the fire, and knowing my brother had to see it.
Losing the treatment that brought me relief and hope for 3 years because of dangerous side effects occurring this month , watching my body deteriorate back to a place I dread with Lupus.
Recent grief that we may never have a child of our own.
Those have been some of my north stars the past year. I have cried a lot, my sailor’s mouth has gotten even more sailor-like, and I have felt the burden of my family’s pain upon my back. And, I have never been more aware of God’s deep care and love.
My mom is sick, but she’s alive and fighting. I get to sit with her and make her laugh and watch ridiculous movies together while she gets chemo.
My brother’s house didn’t burn down and his family is alive and well, though they do miss their four-legged friend. Praying for them all night reminded me how much I love them.
I get to watch the person I love learn to heal, and I am again reminded how much I love her.
I have an amazing husband who has proven to me that I can trust again and reminds me to laugh and play every day. We have the same dream to move to a place filled with land, dogs, horses and life.
My dear Mr B is still here with me, and brings comfort I cannot put into words.
I have a meaningful job that I love. I get to bring hope to people every day, which is to me a reward in itself.
I may not have the strength or health I wish I did, and maybe I’ll never have a chid of my own, but I will always have hope. I get to get up today, and if I died tomorrow I would have no regrets. My heart is more alive and filled with a richness most can only dream of.
It’s not about the things happening around us, or even to us, it’s what they point us to. And what we choose to fix our eyes upon.
Life can be so savagely painful that we may want to give in and and lose ourselves in it’s blackness. And sometimes we do for a while.
But something inside knows that is not the end of the story, and what is happening to me is not the point. There is something much bigger to be seen, and when I allow myself to stand back up and look back into the darkness, it is then I see the stars.