It has been ten years since I spent a Christmas with Charlie. He loved everything about Christmas, including movies and parties. He’d sing the carol “Three Ships” until his throat hurt or until someone threatened to strangle him (that person was most likely me). A Charlie Brown Christmas was on repeat, he knew the lines by heart and would often randomly recite them to anyone within earshot. His love of Charlie Brown just made sense, he was after all named after the blockhead. That’s right, his name was not Charles, it was Charlie. He’d correct people on the daily. Charlie would often laugh when his cohorts had to submit amendments to the courts in order to correct their naming error.
Charlie was the living breathing form of the Christmas Spirit. He lived with a servants heart and would often go out of his way during the Christmas season to brighten someone’s day. It wasn’t out of the ordinary for him to pay for a stranger’s meal, leave large tips, and buy gifts for children in need. He believed it’s better to give than receive. This is one of the areas where Charlie and I meshed, our love language was gift giving and service. Together we’d hit the street at dusk and handout coffee to the homeless with a little something tucked into the sleeve. Charlie loved to mentor as well, he’d beam from ear to ear when one of his Rez Kids got into college. Those were his proudest moments, helping our people move forward to a better day.
Moments. Jay gives me space to share moments of Charlie with him. He understands that he has a seat at my table because Charlie lost his. That Charlie will always be apart of my story and his love will always be with me. Because if it weren’t for Charlie’s leaving, Jay wouldn’t have met the love of his life aka “ME!” When Jay tells me he loves me I always reply “I love you more.” Charlie used to tell me “I love you more.” I asked him why once and he said “because I have a lot of love to give and you deserve just a bit more than the average amount. So, I love you more!”
He loved me more. In away I think Charlie somehow knew that he was running low on time. He lived to the fullest. Nothing was off limits. He was vibrant and quiet. He wasn’t perfect, he had his demons like we all do. Yet he allowed people the space to heal and grow. Charlie did not like to be alone and it seemed he attracted the broken. He never judged you, he just listened and gave thought before he spoke words of advice. His condo was a revolving door, with each shot shared and board game played he saved their hearts. The only heart he couldn’t fully heal was mine. It was 3/4s healed and then it broke into a million pieces on the day that he died. I’d give anything to hear one more, “I love you more.”
Apart of me will always long for more time with Charlie. Our story was cut so very short. Yet, I’ve found ways to keep his spirit alive. I found a partner who understand that 1/4 of my heart will always belong to Charlie. Jay gives me the space to share memories and stories, and he makes a point to tell me “we are running low on the Charlie Brown paper.” Speaking of which, you will always find A Charlie Brown Christmas wrapping paper under our tree. Charlie’s childhood glass Christmas ornaments are safely tucked away, cause you know cats.
Three ships….. is forever engrained in my mind, the words I know by heart. It’s mostly engrained in my brain because Charlie sang it at the top of his lungs all year long. If he wasn’t singing it, he was humming it as he did the dishes, walked Cullen, and strolled through Target. I’d give anything to hear that off tune voice in the shower again or hell even be trapped in a car with said voice. With withered sails I saw three ships, three ships come sailing in……….
I saw three ships come sailing in,
On Christmas Day, on Christmas Day,
I saw three ships come sailing in,
On Christmas Day in the morning.
Charlie is now woven into the fabric of Christmas. He reminds me to view the world with child like wonder and to look for the magic in the mundane. His spirit lives on so long as I speak his name and Charlie’s stories are his legacy. A legacy of love and service. In my heart of hearts I know he is having the grandest time in heaven with Lucia, Baby E, and Emmett. In away I’m jealous, jealous because he gets to spend Christmas and all the days thereafter with our sweet sons. Charlie’s Christmas spirit will always live on in our home for he keeps watch over our sleeping sons.
Many years ago Charlie gave me a Pendleton coffee cup for my birthday. I loved that cup. I made sure it made the move from the suburbs to uptown. It was the cup I had on my desk at the office. This was my cup and no one could drink out of it, like ever.
After Charlie died I brought it home from the office as I wanted it safe in my kitchen. I drank out of it almost every morning as I stared off into the distance muttering “what the fuck,” with the muppet like dog at my side. Until one morning it slipped through my hands and landed on the floor in pieces. With tears welling in my eyes, I swept it’s broken remnants into the trash. I tried to find a replacement cup but it eluded me.
That is until Jay accidentally broke the Pendleton Coffee cup that I got for him in the gift shop at Custard’s Last Stand in Montana. He was heart broken as it had become his favorite cup. I told him “don’t worry, I can find you a new one.” As I scrolled through the tableware section of the Pendleton website my heart stopped. The cup I had been searching for was there on the screen and in stock. So of course I clicked add to bag and then added the replacement cup for Jay.
In that moment, I realized that Jay was meant to break his cup that night. It was Charlie’s way of giving me a reason to log onto the Pendleton website to find the cup I had broken long ago. He sent a sign at Christmas time from heaven above to let me know that he’s still with me. And knowing me he’s probably like “girl order a couple of them, because you drop things a lot.
This cup isn’t the same as it wasn’t given to me by Charlie. However it makes me smile. Smile because it helps me remember the man who healed my heart and opened the door for Jay. Without Charlie’s leaving there would be no Jay. In my heart I know he’s smiling down on us and yelling “live your best dreams!” ❤️
Growing up I was that girl in elementary school who sat in the hallway during the class’ Columbus Day discussion and craft project. Come November I took a seat in the hallway next to the jehovah witness kid during the class’ Thanksgiving party. It wasn’t because I was in time out nor was it do to my religion, it was purposefully done by choice.
A choice that I as a child wouldn’t have made for myself. It was my Dad’s decision that we not be included in his words a “mockery of his people.” He didn’t want his daughters growing up to believe that Columbus discovered us nor did he want us to believe that the first Thanksgiving was all rainbows and sunshine. What really tipped the scales for him was the day I came bouncing home in a paper headdress. “My class put on a play Dad and I got to be the Indian,” I said with glee. He took one look at me and ripped the carefully colored paper headdress off of my head and threw it in the trash.
I was crushed, I worked so hard on coloring the paper feathers just right and it ended up in the trash. I started crying, he put out his cigar and pulled me on to his lap. I asked why he threw away my paper headdress and he explained to me that headdresses are sacred to our people and one should not make a mockery out of one. He explained why it wasn’t ok for the teacher to single me out and make me be the Indian for the play. I tearfully said “but I am Indian and no one else got to play it!?” He squeezed me tight and said “yes you are Indian, but you are not their nor will you ever be their monkey.”
I was to little to understand what he fully meant by that. In the years following my dad filled out a form to exclude me from such class room celebrations. When we’d return from Thanksgiving break the teacher would ask us one by one how our holiday was. That is until she came to me, they’d skip me and ask the kid sitting either behind or in front of me to speak. In forth grade I had enough of being skipped and yelled “it’s just a regular day at my house! My dad tells a story about how the pilgrims ate the Indians and we drive to the cabin to get our Christmas Tree. Thanks for asking!” My teacher Mr. Gordon was both dumbfounded and amused by me yelling out what I did. He asked me “do you think the Thanksgiving story is a lie?” Yes, yes sir I do. He just winked at me and moved on to the next kid.
When I was getting ready to leave that day Mr. Gordon asked me to come to his desk. He told me “your dad is right the Thanksgiving story is inaccurate, but sometimes we have to carry out an inaccuracy for other people’s happiness. Ok?” I said ok, but why? And he replied “because sometimes the truth makes people feel uncomfortable and they don’t like that.” But why I piped back. He just looked at me and said “I don’t know Mannie, it just does. Now get going Ms. Dorothy is probably getting cold standing on the corner waiting for you.” With those words I was off and ran down the street because I didn’t want Ms. Dorothy to think I was in trouble or lost.
This continued all through out my education. Even in High School, I would sit out in the hallway when my history teachers taught the “Indian Unit” in November. My Dad’s other pet peeve is that Native history is white washed by historians, he didn’t want us learning inaccuracies. He wanted us to learn our history from our people and not some history teacher who moonlights as the swim coach.
So when I got to college I minored in First Nations Studies, I wanted a better understanding of my history and culture. My freshman year I had returned from Thanksgiving break and headed over to Gary’s office for help with an essay I was working on. He asked me how my break was and I replied “Thanksgiving is just another regular day for my family…… we don’t have a feast or get dressed up, but we do go shopping and then we get our tree.” Puzzled he asked me why it was a regular day. “Umm because Thanksgiving is a lie, we all know the pilgrims were cannibals.” After I dropped that on him we sat in silence, a silence that soon had Gary cracking a smile.
I’ve never seen another human identify with me more in my life, he looked at me like he had just found his new best friend and said “you’ve never celebrated Thanksgiving? How do you feel about Columbus…..?” I just laughed and said “nope and I cannot stand the lie that is Columbus.” I went on to tell him the story about the paper headdress that started it all. Turns out Gary had also made one and was once the Indian in his class play too. That is the day he became more than a teacher, he became my mentor, and we bonded over our shared dislike of Columbus Day and the Thanksgiving story.
These days Thanksgiving is so over commercialized that folks forget about how the “pilgrims sat down with the Indians for a meal.” Instead we skip the story and go straight to the buffalo plaid table scapes with a perfectly roasted instagramable turkey that is surrounded by a smiling family. Some hurry up and eat just in time for the big game to start while others carefully plot their shopping trip while eating a slice of pie. The Thanksgiving story is being lost to time, while others chose to clutch on to the story as truth. A truth that they cannot bare to give up, even though archeologists have found evidence of cannibalism at Plymouth Rock.
Sadly schools are still encouraging children to carry out this day via pilgrim hats and paper headdresses in classroom plays. Children make turkeys out of their handprints instead of learning about the realities of what led to and what happened after that first Thanksgiving on Plymouth Rock. Part of me believes it’s because educators don’t want to teach the truth about Thanksgiving because they themselves don’t want to admit that they too believe in and celebrated a lie.
Solo? I know that word can be scary or maybe it reminds you of your college days. I too was once a tippy cup champion and held that red solo cup high at bonfires by the shore. However solo shouldn’t scare you, it should instead energize you. In a relationship? Have a spouse or a family, four legged kids count too? Ditch em! Yes you read that right, I said “DITCH EM,” for a solo trip.
Solo as in you and YOU alone. Book yourself a fancy hotel room, hike that trail you’ve always wanted, take yourself out to dinner or just sit on the shore taking in the horizon. Solo travel should be fun and not scary. Be smart and always tell others your travel plans. Google the location of your hotel, checkout all trails, and always always be aware of your surroundings, it is 2021 after all.
Solo trips restore my soul and put energy back into my step. I love a good solid few days of me time. Waking up and not having to worry about someone else’s needs, is glorious. Sitting in my hotel bed sipping my mediocre cup of coffee while watching FoodNetwork makes me happy. Waking up and chasing the sunrise fuels me in ways I cannot explain. I take glorious naps! Dinner in bed, why the heck not! Sappy lifetime movie, yes please! Oh hotel breakfast, sure why not! Dinner plans with friends, ehh maybe!? It’s your trip! Your time! You do you! There is no right or wrong way to do a solo trip.
This past weekend I spent some quality solo time up on the North Shore. I strolled through candy stores, had dinner with friends, and ugly cried when I saw an Adopt-A-Highway sign. Strolled the beaches, followed the stream, and breathed in the beauty that was around me. Sometimes I just need to head to Wisconsin Point to quiet my soul and open my mind. I let the energy of that sacred ground wash over me. The big lake, she heals with each crashing wave that washes ashore.
I said a prayer and watched the waves wash away the tobacco I had laid. I spoke to Gary and Charlie, the crashing waves stilled as a fat seagull flew over my head. They were there and with each piece of found sea glass I poured my heart out. I asked them “help me find a blue piece.” I kept on finding clear and brown, feeling defeated I shouted out “fine I’ll take green!” A few more steps down the beach I looked down and there was a big piece of green sea glass and then another. The spirit world listens and those who loved us in this life will send down signs to let us know that they are still here. The green sea glass, oh how Charlie loved sea glass, was the sign I needed to see. As I was leaving the beach I paused to take it all in, I shouted into the waves “Charlie! Gary! Please watch over my son’s in the land of never ending happiness!” As I uttered those words three little seagulls flew into the clouds. In that moment I knew my sons were being taken care of.
For me solo trips are part spiritual and part fun. The north shore is where I go to quiet my mind and restore my soul. Some folks call Lake Superior their happy place, for me it’s my healing place. It’s the place I go when my soul feels overwhelmed. She has healed me in more ways than I could ever begin to explain. Solo trips allow me to focus on just that, ME. Solo trips = me time. These trips allow me the space to breathe, the space to heal. And when I return home I am renewed and fully engaged in my relationship and work life.
Are you ready to get out there and experience solo travel? Go on now, an entire world is just waiting for you to explore her!
I am no stranger to therapy. I am the queen of acting happy when my world is falling apart. For years my coping mechanism was stuffing my feelings in my back pocket and acting like nothing happened. This worked, until it didn’t. One day my pocket got a hole in it and my feelings fell to the floor. Every bit of my brokenness was laying in front of me, staring me in the eye and asking me to deal with it. The dealing was the hard part.
In mid April we found out that our forth and final embryo transfer did not take. We got a negative blood pregnancy test. One moment I was fine. The next I was eating sour gummy candy while crying in my bath tub. I felt defeated. I felt cheated. I was angry and frustrated that everyone else got their miracle but me. I shared my feelings with my dad and in a brief moment I realized why I am the way that I am. I am the product of his parenting.
He said to me “you do not have time for feelings. Stop it. Get yourself together and get your head in the game. Feelings trip you up. Stop it.” I heard those words a million times during my childhood. If I fell of my bike, my dad would tell me “stop crying. We don’t have time for crying.” If someone hurt my feelings at school he’d tell “you are better than them. They are trying to mess with you. Get yourself together and get back in the game.” My Dad viewed feelings as a weakness. He wanted me to be tough, driven and successful. In his eyes the successful did not feel. They instead stuffed it down, put on a happy face, and marched forward.
My Dad thought he was doing me a favor, but instead he unintentionally set me up for disaster. When the disaster came he again went into his pep talk of “we don’t have time for this, get your head in the game.” Time was something I needed. I needed time to just sit in my emotions. Time to get comfortable with the fact that I didn’t have to always be strong. Strength comes from within, it grows when we face our emotions. Therapy, therapy is what righted my course. In that small office I heard the words “AJ you can have bad days too.”
In those sessions I learned that I can take off the mask, I can share what’s on my mind and those that love me will accept the mess. I learned that it’s ok to say no. That it’s ok to put myself first. That it’s ok to feel everything that makes us uncomfortable. That it’s ok to set boundaries, to take a moment to just be and to breathe in the beauty that’s around me. That it’s ok to wave your white flag and take a nap. Naps are self care after all. Rest restores the mind, the body, and soul. It’s also ok to just be a hot mess who eats gummy bears while crying in the bathtub. No one can tell you how to process your feelings. They are yours and yours alone and only you know how to handle them.
Sometimes we loose our spark. We feel overwhelmed with defeat. It’s hard watching other people get the miracle you so desperately begged God for. God knows your journey and he knows what is to come. It’s ok to feel those feelings, they are valid and no one can tell you otherwise. Your spark is not lost. It just got smaller. Remember all it takes is one tiny spark to light the whole damn fire. Your spark will light a blaze and one day that blaze will lead someone out of the darkness. When you rise, be the blaze. Be the hand that says come as you are and be the voice they need to hear.
All it took was one ring and I do not mean the ring of my telephone. As in one perfectly round plastic ring laced with hormones that you insert into your vagina monthly, ring. In the blink of an eye the Nuvaring changed my life for the better.
At first I didn’t feel that way. I felt cheated, I felt defeated, and I felt a vulnerableness like I’ve never felt before. I was angry, I was bitter and sad all at the same time. I couldn’t see past the mourning of my former life. All of my other friends who had used the Nuvaring got plus signs, while I got a blood clot.They got to welcome home their bundles of joy, while I struggled to find any joy in my life.
I put my trust into my Doctor. I believe her when she told me the Nuvaring was safe. I tried to tell her something wasn’t right. I told her about the pain and swelling in my leg. About how I had tightness, swelling, with pain and redness in my groin. I believed her when she uttered the words “go home, drink some water, walk more, and you will feel better.” Her words would become the stone my testimony hung on. Her words made it blatantly obvious that she ignore my concerns that day.
The hardest pill to swallow was “I’m sorry but your injury was 100% preventable…..” My pulmonary embolism with infarction and stroke were 100% preventable. 100% preventable, all she needed to do was order a blood test and the clots would have been found before they even hit my lungs, heart, and brain. If only she had listened, I wouldn’t of had to live through my worst day possible.
Over the years I have been asked on numerous occasions, “if you could go back would you change it?” Years one through three I would have said yes, yes I would have skipped the Nuvaring and used something else.” Around year four I came to terms with what happened, I came to terms with the fact that this wasn’t my fault. That there was nothing I could do to prevent it or stop it. When people ask me now, I say “no I wouldn’t change any of it, that one disaster made me who I am today.”
I had to go through the pain in order to become the best possible me. That one moment of disaster prepared me for the disasters to come. It taught me that I was strong and that I was capable. Lucia was my silver lining, he was my miracle after the storm. Yet fate, she had other plans and wrote his name down in her book of life and said “too beautiful for earth.” If I hadn’t gone through what I did, I’m pretty sure I would have withered up and died right along with him. His death, his very death gave me the push that I needed. You see I wasn’t living my life, I was just existing in it. My ex husband beat me down emotionally and mentally, he made me believe things that were not true. You see my PE, Stroke, and Lucia’s death; those three things gave me the strength to take myself back and I walked out of a toxic marriage into the life that was patiently waiting for me.
The life that was waiting for me wasn’t all filled with cocktails and glitter. I was alone for the first time in my life. I had to figure out how to be alone with me, myself, and I. It was brutal at first, I was a mess most nights but soon I grew to find comfort in the silence. While learning to be alone I destroyed friendships while going through my post divorce hoe phase. Those who knew me could see beyond the well put together outfit, they knew I was headed for trouble before I ever did. There were people who tried to have many a “Come to Jesus” moments with me, none of them worked by the way. Stern talks were held while having cocktails on patios. Weekend trips to visit this friend or that friend who tired to talk some sense into me until they were blue in the face. None of it worked.
Later that summer I got a Facebook message from an old college professor of mine. He was sorry for my divorce and asked if I needed to talk as he had just gone through one himself. I ignored his message, he was just one more person trying to help someone who clearly had her shit together. A week went by and I heard the ping on my computer, it was another message from him. Maybe it was the wine or boredom, but I decided to respond back. That response led to a late night phone conversation where I poured my heart out. He listened to my words, he didn’t judge my behaviors, and responded softly. He said “get yourself a dog, that will give you something to come home too.” A few weeks later I adopted Cullen.
I found myself calling or messaging him multiple times a week just to chat with someone other than myself. During one of our calls he asked me “remember when we’d drink coffee in the AISO lounge?” Yes I said. He asked me if I wanted to come up for a visit. I had nothing else to do, so I said “sure.” I drove up that weekend with Cullen to see Gary. To this day I don’t know why but the moment he hugged me the flood gates opened and I ugly cried on his shoulder as he squeezed me tighter. The last time he saw me I was a fresh faced 23 year old who was ready to take on the world and give up law school for marriage. I returned to him years later worse for ware with a new hair color and one heck of story to tell.
He led me to the deck and handed me a cup of coffee and asked me “how are you really doing kid.” While we were talking about the hot mess that was my life he noticed a wire poking out of my tank top. He pointed the way any Native points and asked “what’s that about.” I shyly pulled my cardigan closed across my chest, “it’s nothing” I said. If it was nothing you wouldn’t be trying to hide it, you can tell me when you are ready. I looked him in the eye, “I haven’t told you everything. I’m sick. I had a pulmonary embolism that caused permanent damage to my left lung and because of the position of the clot it damaged the left valve going from my lung to my heart. I had a stroke too. I have to wear this monitor because they are trying to figure out if I need a pacemaker as my heart goes into runs of sinus tachycardia when I get excited, stressed or run.” He gave me the look that everyone does, a look of heartbreak followed by a look of pity. He didn’t offer condolences like the others did, he instead asked me to stand up and hugged me as tight as he possibly could. Gary looked me in the eye while squeezing my shoulders, “life is shitty kid and it’s what we do with the shit that matters. I’m glad you are alive. What can I do to help?” My reply “I just want to feel normal.”
That day lead to many days with Gary. He treated me like a normal human being. We golfed, we hiked, we shared jokes and swapped stories on his back deck while watching the sunset. With time I traded in my fuck the world antics for quiet nights in Wisconsin looking up at the stars. With each story, conversation, and round of golf I found my way back to the path I was always meant to be on. Gary made me realize that it’s ok to be broken, or as he would say “the creator made you strong, you were made to break..” He was right, in that moment I realized that my breaking was apart of the plan all along, that it wasn’t my fault, and there was nothing I could have done to prevent it. It’s what I did with the aftermath that mattered.
I was young and dumb and didn’t realize what I had in front of me. I let my ex-husband’s words haunt me and threw myself into my career. I had to prove to the world that I could make it, I made a life in minneapolis and I couldn’t imagine a life outside of the city limits. The northland seemed so far away, it was a slower pace of life that I wasn’t ready for. I wanted to be Independant and not fully depend on someone. Gary understood and our relationship continued off and on until I took a permanent job in minneapolis. The job was an excuse, I let fear override my heart and I once again threw myself into my work. I still remember the look in his eyes the day I told him no….. He quietly told me he understood and made me promise that I would stay in touch. We both moved on to other people and slowly we drifted apart, conversations slowed and visits were few. Yet, Gary was always in my corner providing guidance with a side of inappropriate jokes when I needed it.
I realize now that Gary once again allowed me the space to grow as a person. In college he gave me the space to come into my own as a biracial woman and post divorce he gave me the space to grow into my new normal. His words allowed me to flip my perspective from “oh my god the Nuvaring ruined my life,” to “that one moment of disaster changed my life for the better.” When I made the choice to change my perspective, the energy shifted and my life, it fell into place. Or so I thought, life is tricky she starts burning when you are not looking.
I failed, I was so busy building a career that I forgot to live a life. My career was what I attached my self worth too and I was living to work, instead of working to live. I was burning the wick at both ends and leaving nothing for myself, I was destined to crash and burn. I called Gary on my 32 birthday, I was a mess, even though I had my perfect career I still felt like a failure. I was single, I was exhausted from working 50+ hours a week, and a little bitter at the world around me. Plus I may or may not have been on a first name basis with the cashier at my neighborhood liquor store. I honestly called Gary because I needed a voice that wasn’t going to judge me. Gary talked to me for a long time that night, he suggested that I see a therapist, a Native therapist that would understand our way of thinking. I told him I didn’t need one and was angry that he even suggested it. He also suggested that I lay off the wine for a bit too. I angrily quipped back “I work hard! I deserve a glass at the end of the day!” Without a beat he said “a glass is different from a bottle Kid!” Even though I was a little mad I still promised him that I would find a therapist the next day and that I’d throw out the bottles of wine that I had sought solace in. And I did, I threw the bottles out that night and found a therapist the next day.
I had to go to therapy to learn how to have work / life balance. Turns out throwing myself into my work, into an environment where I could control the variables was my copping mechanism. That is how I coped, I shoved my feelings in my back pocket and went to work, went to work where I could be normal like everyone else. Yet I wasn’t normal, I was never meant to be normal. Bad things happened to me, and out of those bad things came a lot of good things. I had to learn how to say no to people. I had to set an alarm so I left work at 5PM on the dot and not a minute later. I had to learn how to have a life outside of work, because I am more than my career. I had to learn how to live life, a beautiful life that is a disaster.
That one small plastic ring changed my life in more ways than I could ever begin to describe. It brought people into my life that I wouldn’t have otherwise met. It allowed me to put myself first and walk out of a loveless marriage. It allowed me to have deeper relationships with people and it gave me the ability to emphasize with those around me. It brought men into my life who changed me for the better, those men prepared me for the relationship I am in today. That one small ring did a lot of damage, but it also did a lot of good. Because I am more than a complication, I am more than a survivor, and that one ring no longer has a hold on me. The Nuvaring made me into the woman I was always meant to be and for that I am grateful that I survived the disaster and found a life amongst the ruins.
I can still remember exactly what I was wearing on the day my world broke. Gray cardigan, white button down peasant top, jeans, and cranberry ballet flats. The shoes, I still have them. They are worn and raggedy, I just can’t let them go. Those shoes carried me in the ER and they walked me out days later. Those shoes are a symbol that I survived the worst day possible.
Every day I am reminded that four had to die so I could be the one out of five who walked away. I live each day for those who no longer can. I live each day for the women who lost their lives to the Nuvaring. Those women are my battle cry and I will not rest until there are none. Those women whom I’ve never met have given me more strength than I ever thought possible.
Every day I am reminded that not everyone gets my outcome. I live each day with the knowledge that my stroke was 100% preventable. If only my doctor had actually listened to me and ordered a simple d-dimer test. Not all stroke patients get my outcome, some are scathed while others loose the battle. Their disability and their deaths have become my fuel, to ensure that no one else has to live our worst day. Seeing their struggles and their caskets are the stark reminder that the battle isn’t done, we have a long way to go until there are none.
I’ve been given twelve additional years on this earth. Twelve borrowed years that I lovingly call “survivorhood.” I wish I could say it’s been all rainbows and unicorns. But it hasn’t, I’ve had really good days along with terribly bad days too. It’s the bad days that allow me to dance on the good days. The bad days allow me to heal and savor all that is good in my life. I wouldn’t trade this life for anything in the world. Have all my dreams magically come true, nope they have not. The universe she has shown me no favors. I have had many blunders and mishaps along the way. And when everything seems to fall in place, she throws a rock in my shoe. Especially when it comes to love and motherhood. I like thousands of other women am still waiting my turn, motherhood eludes me.
Love I have found it, I have lost it, and I found it again. There have been men who had to healed a heart that they didn’t break, they were the stepping stones that led me to Jay. Those men allowed me to be messy, they allowed me to heal out loud, and to just simply be. And I know Charlie and Gary are both looking down and saying “can you believe it! She ended up with someone her own age!?” Yes, yes I did guys, I ended up with Jay who is just a little over a month older than me. So I think technically he still counts as an older man….. 😉
Jay has been my rock and like the others allows me to simply be me. With time he took my bags and accepted them as his own. He knows what it’s like to struggle and he’s learning to lean into things he cannot see or know. Our relationship is far from perfect, but we’ve found a groove and the best is yet to come. We’ve spent more time in hospitals and fertility clinics than we care to admit. He always tries to make me laugh on my worst days and held me tight as I ugly cried into his shoulder after I heard the words “I’m sorry he’s gone” and “I’m sorry your pregnancy test was negative.” Parenthood is a dream we both believe in and we’ve fought tooth and nail only to end up with babies in heaven. Our sons they were to beautiful for earth.
Jay understands that sometimes survival means going for a solo drive where I can loose my mind while jamming out to tunes on the curves of a country road. In Jay I found a man who understood the loss that occurred so he could have a seat at my table. I found a man who loved every inch of my broken heart and soaks in every drop of this life I call survivorhood.
Survivorhood isn’t all sunshine and unicorns shooting glitter rainbows out of their asses. There are hard times too. At times I feel overwhelmed because the universe keeps throwing wrenches in my plans. There are times where I am in a funk that not even the funniest joke can crack and there are times where life is just plain shitty on all sides of the equation. In those moments I want to yell, I want to cry and hide away from the world. Then I remind myself that these moments even though terrible are moments you were not meant to have. In the struggle I search for the tiniest sliver of beauty. I search for the positive in the moments of darkness and I remind myself “that this will pass.” We have to take the bad with the good, otherwise this life wouldn’t be a life worth living. Because this borrowed life that I get to live, is a beautiful disaster.
I have been to more funerals than weddings. I have written more eulogies than I have maid of honor speeches. I have said see you later more times than I care to count. It seems this life I’m living is riddle with loss on all sides of the line.
That loss hits especially hard when the death was caused by the very thing you survived. You know deep in your heart that person would gladly take your seat and have a chance at a brighter day. But here you are, living in the aftermath of survival. Surviving is the easy part, living out that second chance is where it gets messy.
I have stared up at the sky, no let me correct myself…. I have screamed up at the sky “why did you save me and not him or her? Was their life not important!? Were they not worthy in your eyes!?” My screams are only met with frustrated silence. Fate she never answers, she holds a tight grip on her book of secrets. One thing I do know is on October 22, 2009 my life was slipping away from me and The universe whispered “not today child, not today.” And I was given a second chance at this thing we call life.
A second chance to live out loud. To chase my dreams. A chance to take myself back. When I got out of the hospital I knew things had to change because the course I was going down wasn’t meant to be my path. I was a hot mess, I wasn’t living, I was merely existing. Add in a still birth, an abusive marriage, a divorce and a whole host of other things for good measure and you will see that the universe showed me no favors.
The universe showed me no favors. My second chance at life, this borrowed time I’m living wasn’t earned easily. I fought hard for it and have the scars to prove it. Surviving is the easy part, living is where it gets hard. Hard as in standing at the funeral of someone your age, wondering “why Adam? Wasn’t he worthy of a second chance?” Adam was the first tick mark in the friend’s death column. A column that grew faster than I would have liked. In the past 12 years I have said more see you later’s than hellos.
I have watched people die from the very thing I survived. Sitting at the funeral for someone who died of a pulmonary embolism is a fucking hard pill to swallow. Strokes, strokes are a whole other level of guilt. Seeing someone go through the aftermath of a stroke, knowing their outcome could have been different if they had gotten care in time is a suffocating silence. Hearing that someone passed due to stroke complications is a deafening pain that only survivors can understand. Their deaths didn’t have to be, we have science and research that saved my life and thousands of others. Yet somehow the universe didn’t whisper “not today.” Instead they were called home, called home.
For as long as I live I will never understand why the universe chose me to save that day. Out of all the people who needed a second chance the universe breathed life into my soul allowing me to live on borrowed time. These years I’m living are not mine to live, it’s stolen time, stolen time from those who didn’t get a second chance. Each day I live, I live for those who didn’t get the option. The option for a second go around. I carry their deaths in my heart, it’s my burden to carry.
I made a choice that day, a choice to make a difference. And a difference I did make. It was my vow that no one would ever experience my worst day possible. A vow I’ve failed to keep, yet I still keep on trying. Research and early intervention can and will continue to save lives. Clot busters and the stroke systems of care will guarantee better outcomes for stroke patients. Awareness will help folks spot the signs and symptoms of blood clots before they reach the lungs and brain. Education on the deadly side effects of hormonal contraceptives, will prevent another woman from experiencing my worst day possible. My survivor’s guilt has turned into my passion and I will not rest until there are none.
I end this with a story. After my divorce I reconnected with my mentor from college, Gary who sadly lost the battle in May 2021. Over the years I did a lot of ugly crying on his deck and at Wisconsin point, yes I’ll admit Pattison Park too. Pretty much the whole south shore is full of my tears. Gary once said to me “the big lake can heal kid. Go sit by her and let the energy wash over you.” I asked him once “do you think I will ever find out why I was saved?” He looked at me and said “Kid, no I don’t think you will ever find that out. But what I do think is, the universe she wasn’t done with you yet. She knew you had more work to do and that it was necessary that you complete whatever work it is, so you were given a second chance. Kicker is we don’t know how long that chance is, only the universe knows.” Gary was right, we don’t know how long our lives will be or when our work is considered done. His death in my eyes was premature, because he had so much more to give to this world. And knowing he died from the very thing I survived cuts a little deeper.
A part of me wants to be mad at the first three fertility clinics I went to. Like someone along the way should have picked up on the fact that I might possibly have endometriosis plus a side of adenomyosis. Yet no one did and so they shoved me into their one size fits all protocol box. In which in their defense my numbers always looked great so their one size fits all approach worked.
It worked until it didn’t. In Iowa I cycled two times and both were canceled prior to our retrieval date. Dr. Young’s last words to me were “if anyone can get you pregnant, it’s Mayo.” His words soaked into me like water to a sponge. Yet I never picked up the phone to make an appointment with Mayo. Instead we explored our options such as foster to adopt and donor embryos.
By the fall of 2019 I had my heart set on donor embryos. I was ok with carrying someone else’s genetic material to term and calling that baby my own. But my heart she still whispered “let’s try one last time. One last time.” My gut gave me the courage to call Mayo for a consult. And on an icy February morning I drove down to Rochester and never looked back.
Mayo takes a team approach to infertility treatments and therefore you need enough of the team to believe in your case in order to proceed. The day of my consult the majority of the team was at a conference and I wouldn’t find out if I was accepted until I got back from my cruise. We did everything on the cruise to keep my mind of Mayo and it worked. Sherri and I had a blast aboard the Carnival Victory. And we soaked in the sites of Key West and Cozumel. It was a trip that I will always treasure.
When I got back the Doc from Mayo called me early Monday morning to tell me that I had been accepted. As fate would have it the university of Iowa called a couple hours later to tell me that we were next on the donor embryo list. That night jay and I weighed the pros and cons. We prayed and my gut told me that Mayo was the answer.
Enter Covid and all of our appointments got postponed. Which was fine by me, people needed the PPE and doctors more than I did. In May I had a pelvic MRI done and was at that time diagnosed with endometriosis and adenomyosis. Dr. Khan could also see plain as day my complicated anatomy on the screen. He explained that we could do surgery now or wait. Wait because if my ovaries had to be cut open I’d loose what little egg reserve I had left.
I chose to wait. In July we did one last Hail Mary retrieval cycle and ended up with two high grade embryos. Which I am still trying to wrap my head around the fact that I have two embryos in the freezer. The team at Mayo was just as excited as we were and they were so glad that we were able to freeze embryos.
Anyways back to the endo, I had my surgical consult at the end of August. During my consult Dr. Khan was once again very thorough and he explained everything to me. He laid out the options and the plan and like before he gave me choices. Hard choices like “if your Fallopian tubes are diseased is it ok for me to remove them? If removed you will be infertile.” Well according to medicine I am already infertile so I said yes to that option. I walked out of his office knowing that we had a solid plan and that one day soon my body would feel so much better.
Surgery day came sooner then I thought it would. The date it just sneaks up on you and before you know it you are in the shower with antibacterial soap that makes your skin itch. My surgery was delayed by 6 hours due to the case prior to me needing more time. I was fine up until hour 5, my hunger and thirst set in and I’d do anything for water. Thankfully a nurse took pity on me and gave me a little bit of water. Soon it was my turn to go down to pre-op. Where when I saw Dr.Khan I asked “did you forget about me!?” He said “how could I forget about you AJ. You are one of a kind.” He once again went over the plan and even the changes he made. He decided it was best to leave the adenomyosis alone because cutting it out of my uterus could cause more harm than good.
Five some odd hours later I was backup stairs in recovery. I do want to add that the post op recovery unit closed at 9PM. Two nurses whose names I did not catch stayed late so I could go home to my own bed. The nurses I had were incredible. They made sure I was able to walk on my own. One nurse helped me get dressed and made sure we had a barf buffet cup (it’s a bucket filled with wipes and Kleenex) to go home with. The nurses wheeled me down to the pickup zone and waited for Jay to bring the car over. On our way down I kept apologizing to them and they both looked at me and told me it was ok. “This is our job. We love our job. We’ll go home tonight and do the exact same thing again tomorrow.” They both gave me a hug and helped me into car and we waved goodbye as we drove off.
There is something about a Mayo Clinic nurse. They truly have a servants heart and away with people. I was always amazed by my Dad’s nursing staff and now to experience it on my own, he’s right when he says “they are the best of the best.” It’s true they are and I am so thankful for the care I received from my recovery nurses.
Rochester is 75 bumpy miles from Burnsville. And I felt every bump HWY 52 had and I’d never been happier to turn into our little street. We got home after midnight and that first night was pretty rough. French fries were a bad idea…..(I’ll leave that for your imagination). But butter toast saved my tummy along with some oxycodone and a little bit of sleep. You don’t realize how much you use your core and pelvic muscles until they are cut open.
Speaking of cutting, Dr. Khan diagnosed me with stage IV endometriosis and an ASRM score of 76, which in normal human terms means, really bad. He told Jay I had one of the worse cases he’s ever seen. Which is strange because I never showed symptoms, my endometriosis was the silent yet naughty kind. He removed endo from my pelvic cavity, abdominal cavity, colon, rectum, ligaments, ovaries, uterus, and a whole lot of other spots too. It’s crazy to me how much damage was done to my body every month and that this had gone undetected for years.
When I think back to the first three clinics, two out of the three saw dollar signs. Especially CCRM Minneapolis, Dr. B claimed to be an expert, yet she missed a lot of fucking red flags. And her arrogance didn’t allow her to seek outside advice on my case. Her kicking me out of the clinic lead me to Iowa. In Iowa Dr. Young did his best to help me, but at the end of the day I was to complicated for him. And I respect his walking away from my case and sending me off to Mayo.
If it weren’t for Dr. Young’s words I’d never would have gone to Mayo. Mayo’s tag line is “when you are ready for answers.” It’s perfect, I was ready for answers and I got answers and explanations to everything I’ve gone through in the past five years. One MRI sealed my fate and now knock on wood I will be living endo free for a long ass time.
We transferred our only two embryos in February and April 2021, both transfers resulted in a negative beta. We found out after the fact that our care plan was followed and well it’s Mayo, so there is nothing we could do but cut our losses and run. We did a lot of soul searching and made the decision to move forward with Donor Eggs out at a clinic in New York. Twenty something year old eggs are a better chance than my dusty 39 year old eggs. With a little luck and a lot of faith by this time next year we should either have or be pregnant with our rainbow baby. Yes I’ll be a first time mom to an earth side child at 40, and I am so perfectly ok with that. Old moms rock!
The lesson I learned in all of this is…. listen to your body. Do not give up on her and keep searching until you find a doctor that will really listen to you and not throw you into the one size fits all box. You are unique and you deserve the very best care. Everyone deserves that. So if you feel you might have endo, go talk to your doctor. And if your doctor doesn’t listen go find one who will. Because living with endometriosis shouldn’t be a death sentence, it should be a piece of your story.
I love everything about fall except for two things…… thing 1, those stupid plastic spider rings that come in the fake cobweb packages and thing 2, pumpkin spice EVERYTHING! Friends I firmly believe that pumpkins are meant for carving and not eating. Yet here we are, we live in a world where everything and anything right down to pumpkin spice scented cat litter exists. Starbucks, Caribou, basically all coffee shops in America have been taken over by the crap. No, no I do not want to try a white pumpkin spice mocha latte thing, I want my regular tastes like actual coffee crafted press! No I do not want a pumpkin spice bratwurst nor do I want a pumpkin spice cookie. Hell, I even saw pumpkin spice cheddar cheese…. Cheese is good on its own, why are you messing with it and throwing in pumpkin spice… why? Why do we need that?
I digress, pumpkin spice is like a hot button for me. I don’t understand it, I don’t like it and I’m tired of it taking over fall. Can we go back to witches, monsters, and ghosts!? It’s spooky season and not basic Instagram suburban bitch holding a pumpkin spice latte while wearing boots and a flannel shirt season. I say the last part with love, don’t come after me in the comments.
Anyways back to the pumpkins the other day I was at Hooby Looby and I noticed an entire isle, both sides filled to the brim with fake pumpkins. This isle made me question my belief in humanity, why! Why do we need leopard print pumpkins? Why do we need them, followed by Buffalo plaid pumpkins and gasp polka dot pumpkins. Whatever happened to all of the realistic fake pumpkins? I want a fake realistic pumpkin on my doorstep and not something that looks like I skinned a leopard for it’s fur. Also don’t get me started on the Indian figurines that I spied at Hooby Looby….. which I may or may not have set in the backs of the little red metal trucks that were on display and positioned them to look like they were getting ready to ram the pilgrims…… Yes I have feelings, big feelings about fake pumpkins and Indian figurine. It’s what I do with those feelings that matters. I suppress those feelings while messing with store displays.
Enough Hooby Looby! This is spooky season, it’s the one time of year that is acceptable to scream like a child while going through a haunted house. Or if you are like me you hyper ventilate and get led out the side door. Yes, yes sometimes I get scared and hyper ventilate, it’s a thing, it happens. Anyways if you want a good time, take me to a haunted house…… chances are you will learn about the secret escape exits. And our early escape usually leads to hot fresh mini doughnuts. Haunted hayrides, I’m good with those. I promise I do not try to jump off them and only get mildly scared. Then again depending on how good it is you might have bruises on your arm from me clinging to you.
You could also be brave during spooky season and go to a real haunted house. As in a real house that is haunted by ghosts or maybe even a haunted cemetery. Haunted bars count too and bonus if they have a drink named after said ghost. I have done this with friends numerous times time over the years and usually I’m the one who is not running away screaming. Fake haunted houses mess with me, real haunted houses leave me as the collected one. I am also the one that likes to scare people in said real haunted houses. I do however draw the line at grave yards, not because I am afraid, but because of the high chance you might trip over a stone and hurt yourself. Remember safety first friends, broken ankles are not spooky nor are they fun.
I should also add that I ear an absurd amount of candy corn during spooky season along with apples, apple pie, apples truffle, and hard cider. I am a fall baby whose never had a normal birthday cake. All of my cakes have been Halloween themed, as well as my parties when I was little. October 27th was the practice day to try out your costume at my party before the big day, that is if you were invited. Don’t worry I pretty much invited everyone to my party. But now as I’m older I enjoy dinners with my family over the hoopla of a shindig. I find solace in the crisp fall air as I soak in every changing color before the snow flies. Spooky season will always be my season and pumpkin spice can be damned!