What if your whole life was a sham? You couldn't look back on one moment you weren't twisting things up and creating a shade, so that you could hide what was really going on?
Here I'll open up myself to a life that has been just that. Pain, trauma, revelation, and triumph, and now, a new journey through peace, joy, and the fight for a healthy life and mind as an individual and a mother even with the odds stacked against me. I hope you will join me.
but only to sledgehammer them away with breaths of unfathomable strength.
Unleash the beast within you,
lying dormant in wait for you to believe in the gifts that you yourself hold the power to.
The weights of this world have nothing on a beautiful,
Take that power,
face the demons in your mind,
and those standing in the vicinity of you,
and say the word that will send them to their final resting place…
When I wrote this, I had no idea it would become a mantra that I would find myself reading back to myself time and time again. I actually wrote it to encourage and empower a girlfriend of mine. It’s crazy how, as writers, sometimes we can write things that are meant for others, and the individual piece ends up changing our own worlds.
It is true as women, we haven’t always felt as though we are at the top of the food chain. At times, just based on our genders, we are shoved aside, not picked or not first pick for the careers that we are the most qualified for, ignored by majorities under the assumption that we are dumb, underestimated on a daily basis, and largely just expected, even in 2021, to simply pop out children and stand in the kitchen.
Ladies, retribution is in a firm, brave, and courageous flip of your hair. A stance of a warrior. A sway of a big, beautiful, wide set of thick-woman hips strolling down this path with a strong mission. We don’t always recognize the power that lies within us. It is there. Waiting for us to grab it and use it. Waiting for us to own it.
I will always wear my scars like a beautiful lipstick. Smooth in color, strength in a smile, and unstoppably confident knowing that at any given time, I could power up, look myself in the mirror, and know that even in a battle for one, I am the lion who comes out last.
You know how they say “when it rains it pours”? Well, I hate that saying. Mostly because of how much truth it can hold. It’s amazing just how much can change in a year in your body. Each day, a mystery in a bad way. So much so that honestly, you dread going to sleep because you have no clue what the next day holds for you. One day to the next, completely exhausting. And all you truly want is to enjoy the happiness you finally have in your life.
You might remember in the last entry of this series all of my diagnosises up to this point. Fibromyalgia, Lupus, Arthritis, Dystonia, and the latest up that point, COPD.
It has been a whirlwind even since that last post. My vitamins have been out of whack, my fatigue has been in overload, my breathing has seen some very bad days, and some good days.
I want to go back for a moment to 2019. Towards the end of November 2019, I woke up one morning feeling as though I had a large grape sitting in my throat. After a couple hours went by, that grape began to feel more like I had a golf ball sitting in my throat. I decided at that point that I should go to the emergency room. The ER doctor did xrays, and some swabs for strep and told me I had tonsilitis. I was completely baffled considering I haven’t had tonsils since I was 11 years old. He gave me a steroid shot and sent me on my way. The steroid shot did seem to help the swelling in my throat go down. However, a couple of days later, I felt just absolutely horrible. I couldn’t breathe and just felt like complete crap. Two days after that, the hospital called me and said my strep culture had came back positive. A week from then, I was even worse so I went to a walk in clinic. I was so short of breath that by this point, I could barely even get up out of the recliner I had been sleeping in. I found out at this point that I had pneumonia. I stayed deathly sick for the next month.
Over the next year, I had a couple of problems here and there with my breathing and while at one walk in clinic visit, I mentioned how from time to time, my throat swells up and feel like a golf ball in sitting in it. That particular doctor told me that if it continued, I needed to get my thyroid checked.
By November of 2020, I was exhausted. I had since been diagnosed with Lupus along with all of my other things and was feeling beat down. And just like a repeat of the year before, I began to get so sick again. Next came a slew of doctor’s visits, and even a couple of ambulance calls. By January of 2021, I had had enough. I had my doctor refer me to a pulmonary specialist and of course, as stated before, after breathing tests, and a catscan of my lungs, was diagnosed with COPD (stage 3).
Over the past year, I have had problems with the thing (golf ball) swelling up in my throat and began to notice that certain foods triggered it. So, one by one, I began cancelling foods out. I can’t eat pizza, can’t eat spaghetti, can’t eat sloppy joes, can’t eat blah blah blah. But over the past 2 months, it began to swell and not go down. So, my primary doctor set me up for an ultrasound on my thyroid.
Fast forward to last week. My primary doctor’s office called me to set up a slew of appointments discussed in our last appointment. Before she let me go, I had to press her to remind her of my ultrasound and she looked in my file and realized that they were in there. I was immediatley scared as she told me they found multiple nodules on my thyroid.
Now, I wait. I wait with this golf ball in my throat. The thyroid specialist couldn’t get me in until July 28th. And I am also waiting on a GI specialist appointment because I am having so much trouble swallowing.
I’m overwhelmed with so much frustration. My primary doctor for years moved to the beach and didn’t tell any of his patients and I got stuck with a doctor that is very old and only works 2 days a week, which I am quickly realizing is not available enough for me with all of my health problems. He also seems very absent minded and confused which frustrates me greatly. I have decided that as soon as all of my referrals are set up, I am finding another primary doctor immediately.
It’s heartbreaking and so frustrating to be surrounded by doctors whom you feel don’t care about you. The only one I can say cares a great deal about me is my pulmonary doctor. He is incredible.
I daydream all of the time. I dream of what life could be like without all of these health problems. I have an incredible daughter who has a whole future ahead of her, and a man whom I am so in love with that sometimes I want to pinch myself. I want to spend my entire life with him. I want that to be a long life.
I embrace and cherish every moment in my life now. The sun’s brightness feels different on my skin. When my significant other and I are working with our plants and garden in our yard, it is the greatest times I cherish. Cooking meals for him and my daughter are moments that I don’t take for granted. Making them muffins so they have a great breakfast snack. Making his lunches every night before work the next day means everything to me. To be providing for others while I can, and praying that I can do it for many years to come.
I don’t dwell on these appointments coming up. I can’t. I would lose my mind entirely with obsession if I am not careful. Life is too important to focus on things you can’t change. I want to love. With my whole heart. And even if the only adventures I go on right now are the ones in the garden with him, or in the car going down the road with my daughter, they are the greatest adventures in the whole wide world.
When you’re younger, you never dream of getting to the day where you have to begin to watch any of your loved ones dwindle away. The truth is, you also plow through your own life thinking you’re untouchable. Eating what you want, doing spontaneous things with an indirect carelessness. Never thinking of the later in life consequences that will be waiting. When those days come, they slam into you like a ton of bricks.
I can remember very clearly the seldom good memories that surround my adolescent years. I can tell you with absolution that most every one of them involve my grandparents. They hold such a huge piece of this puzzle that has been my life.
I can hear my grandmother’s laugh. Her incredible sense of humor lit up the entire room every single second she was present, and you absolutely noticed when she wasn’t around. Her immense sense of innocence from the time she grew up in was so humbling, and honestly to us growing up, hilarious. No matter what, she loved people with her whole heart. Even when they treated her unfair or unloving. She was the direct reflection of Christ. She cooked the greatest of meals, and had a perfect medical remedy for any sickness or ailment you were suffering. It was all right there in a medical search book that was almost bigger than she was.
The most fondest of times throughout my life was watching the love between her and my grandfather. 70 years of marriage and not a second of love lost. A type of relationship that will almost die with their generation. Her being 16 when they married, and living of poverty that most people only read about. I’ve heard time and time again, throughout my entire life, the horrors of their starvation, kids left wanting, tears from not knowing what they were going to do, but also the beautiful stories of togetherness, all the way up until the time my grandfather miraculously got the job that would change their life forever. It’s a story for the books. A story for the world. In the most humbling of sorts, and I want to hear it over and over. I hear something new every time that I do. The part that strikes me as rare, and as the realest form of love, is the fact that throughout all of these years of struggles and fear, they never faltered in their love for one another and their family. They never gave up on each other, even when they wanted to.
My grandmother, the great mother of this whole family, went through so much in her life. An alcoholic father, and a detached and seemingly emotionless mother. Yet, when you meet her, she is one of the most selfless, caring, and loving people you will ever meet in your life. She is one of the rarities that go through trauma, struggles and strife, and make it out in the end making the tough decision to not only not let it define her, but also choosing to love all people right where they are. She incredibly chose to love them with an unconditional love and kindness that is immeasurable. No matter what you were going through, she saw through the bad and could always find the good in anyone.
I can look back on an extensive amount of time I took for granted with my grandparents. Beautiful times I simply flushed down the toilet being selfish, being absent, and most of all, being angry in the most evil of ways. The way I spoke to them and the way I treated them and walked all over them is something that haunts me to this day. Being overly passive, they let me walk all over them. And absolutely never gave up on me. They are two that I can say with absolute certainty, that 100% believed in me, and loved me through every very horrible moment up to this very day. They were and are the reason that I learned the very basic of skills that started me out in this world and kept me alive in the hardest of times. Times that someone of such a young age should never have to experience. I credit them for the gift of prayers, protection, and immense amounts of love that at that time, and sometimes even now, I didn’t and don’t understand, and definitely didn’t and don’t feel I deserve. But my grandmother, she is the one that stands out. My best friend, my confidant. The one person I have always ran to when things were crumbling and completely hopeless. Always having the greatest words of encouragement, and never failing to remind me that I was capable of anything and everything in this great big world.
I never, not in a million years, thought that I would watch my grandparents dwindle away to nothing. My grandfather, now 92, is ate up with Parkinson’s disease, shaking and stumbling around, stubbornly, on a walker, and stumbling around like the tin man. He spends all of his days planted on the couch, a prisoner to his body, falling asleep and drooling on himself. I try to reach back in my mind and picture him out in his building tinkering with a new project, perfectly manicuring his perfect yard. Labeling everything, down to the fly-swatter and each lightbulb throughout the house with the date purchased, and/or the first date used. The memories of those days are fading from my memory, and being replaced with these sad days on repeat.
My grandmother, now going to be 87 this month, is just a shell of herself. Dementia tearing away at her entire being. You yearn in each moment with her to reach in and pull out that comforter, to watch her put on her signature red lipstick, to hear her incredibly encouraging words to pick you back up, but instead, each sad moment, current and long ago, playing on repeat in her mind like a skipping record. The recent death of her sister, the recent death of her pastor’s wife, her brother being in horrible health and on a defibrillator. All seeming to bounce around in her mind like a pinball machine and as each one makes its way to the front, she voices it again, as if it’s the first time.
We can’t and shouldn’t tell her any of the sad things anymore. Most in the family are the doing the selfish thing and telling her anyway. Which is the ultimate selfish act. It’s like writing in a diary that reads it back to you. I don’t. I no longer confide in her, or fish for her encouraging words. I cherish the days that they are offered naturally. There is no red lipstick, hair is never brushed, and she is always in the same outfit with the same house robe on top of it. She waddles around, door to door in the house, sitting blankly on the porch. Day in and day out, the same day over again. I want to hold her. I want to tell her everything is going to be ok.
She repeats a story to me. We took care of her mother who had and ultimately passed with Alzheimer’s disease. She has always repeated the same thing to me. I will go any way the Lord wants me to, I just ask him not to take my mind. And now, here it is. The one thing she didn’t want to happen. She still repeats it, even in her deteriorating state, that everyday she prays to hold onto her mind, and that home-health says she is doing great, even though we know she’s not.
I’m sure the black bird’s cry is louder than ever. I yearn to peek into that realm even if for just a moment to see what they’re seeing, to hear what they are hearing, to think what they are thinking, and to feel what they are feeling. But it’s for selfish reasons. If only just to comfort myself on the feeling of having already lost them, or even to understand it a bit better when it’s time for them to fly away swiftly with those waiting on them.
The grass grows up past the sidewalk now. The flowerbeds choked with weeds. Building in the backyard, in the past filled with noise of new projects being completed, now sitting in rot in the overgrown yard. A lonely shrill in the air. A sadness in the waiting and the not knowing. An almost beautiful feeling in thinking that every time you’re there with them, is the last. Teaching you, and forcing you to cherish each and every second of the time spent with the parts of them that are not already gone. For now, the black birds compete with the song of the blue birds, which is a lasting hope I’m holding onto.
I’ve been up and down on finding a whole new level of positivity. This is a whole new journey I am on, and it’s one that did not start off with good news or a positive look for the future.
I would give anything to find my circumnavigation for this nightmare. A way to pull the ultimate trick move and have the final prize be a clean health slate. The ultimate 2nd chance of a lifetime. But this is my reality. I constantly have to remind myself to stay focused mentally. Because right now, unfortunately, if I lose focus for even a few seconds and let the sadness of my health creep in, it will cause such a negative mental health domino effect.
On top of fighting this health battle, I have never felt more worthless than I do currently in my life. I spend all of my time, even when I feel at my worst, waiting on everyone else hand and foot. I am by nature, a natural caregiver. It’s just something I do.
I don’t have a job that pays a paycheck. My life up to this point has been a flop, if I am being completely honest. The only thing I truly have to show for anything I have done in my life, and that I have ever accomplished, is my daughter, who is so incredible, and an incredibly frustrating Criminal Justice degree that did more harm financially in my life than it ever did helping me.
Now that I am not well, I don’t know how I am going to work. I don’t know how I am going to make it. Yesterday, I went to the store to get a rotisserie chicken for dinner and when I got in line to check out, I had forgotten that food stamps (yes I currently have to get food stamps) do not cover hot food from the deli. I then proceeded to have to count $7.00 in change out at the register out of my zip lock bag I had been saving change in, to be able to take the chicken home. Very low moment indeed. It gets better. I then had to drive home, count more change, and go back to the store and pay for tampons and pads with change as well. Because every woman knows that no matter how bad your health already is, your female parts have no boundaries.
I’ve always found a way to make things work. I’ve never felt as though I needed anyone, even when I feel at my most rock bottom times. It’s because I’ve spent the bulk of my life with walls I purposely built around me protecting me.
A lot has changed over the past 5 years however. I really started working on myself and doing a lot of hard work mentally the most. I’ve let more people in than I could have ever dreamed I would have. And in turn, I let people go that had been in my life for what seemed like forever and that I could have never fathomed parting from before. It’s been a trying yet, freeing experience. I have, for the first time ever, began to embrace people and the love that they offer. And I have truly and wholeheartedly learned to love people exactly where they are at. Anyone who knows me knows that I have always been a huge touch-me-not. However, after doing some soul searching, and learning to pick and choose battles in my own life, and with my daughter, who struggles with mental health issues, I learned that some things are just not worth hanging onto. It has taken me years to fully achieve and appreciate the depth of that kind of realization. Now, I love other people’s ability to love. And I have learned to truly love them. Even when it’s hard to.
If I would have known that forgiveness was such a huge cure all for so many things in my life years ago, I could have saved myself so many years of ruination. I’m sure I can get more into that in another entry one day. Most of all, when you get such a life-threatening diagnosis, things you used to think were so important, or pain you had hung onto for so long unwilling to let go of and forgive for, just seems so small now. I am lucky enough to had already been working on forgiveness and loving in my life for a few years now. I had to. If I am being honest, I spent most of my life being so angry. I mean so angry that everything made me angry. I expressed every emotion with anger. And I plowed through years and years, destroying everything in my path. I wish I could go back now. I am free of it. I never, in a million years, would have ever thought I would be able to say it.
Today is one of my bad days as far as my health. In a support group I have recently joined with others who have similar diagnosis’s as mine, they advise that there will be bad days; and that on those days, you should rest so you’ll be prepared to enjoy your next good day. I’m trying. And looking forward to my next good day. I cried today though. I want to walk the driveway. Simple right? No. Not for me, at least not right now. I also cried because I hit a bird on the way taking my daughter to school this morning. I’m honestly quite unpredictable right now lol. But I’m not giving up, and that’s what is most important in my eyes.
I’m fighting for my personal odyssey. My own eventful and adventurous journey. I hope to one day look back and say that I visited this nightmare portion of life, and that it was my sojourn in this time for the greatest of lessons…… humility.
Feeling numb in the way that life is going. I feel like my life is a train, but I am stuck on the caboose, and no one is driving it anymore. I feel used up in a way that is so lonely. And I’m fighting every single day to remain optimistic and faith-filled about how I feel about the future. I just simply want what everyone else wants in the end…..hope.
I am closing my eyes, wading into these unknown waters. You can spend years of your life contemplating what you’re gonna do with each portion of it. Then, out of nowhere, you get news that makes you rethink everything. You question how far ahead you should plan, or if you can plan at all as far as career because of your health. Yet, here I wade, deeper and deeper.
There’s a drive in me. I’ve noticed that it comes and goes, depending on my mood. One minute, I’m unstoppable in my mind with what I plan on accomplishing going forward, no matter the obstacle. Then, all of the sudden, I feel brought down to my knees with mourning for my own self. This sadness comes over me and it becomes everything I can do to not just give up.
My lungs feel as though they are turning to stone. As if I turned a corner and stared straight into the eyes of Medusa herself. Or could it be possible that I have became instantly related to the tin-man? Only as a distant cousin, and there is no oiling up for me…
I have been so many different dark and horrible places in my life. However, this is by far the scariest I have ever felt. I try to focus the most on keeping faith and optimism. But unfortunately, I am still a human. I fear and worry.
When you’re a little younger, you think you have all of this time to stop doing the bad things you’re doing and start taking care of yourself. I call it the “I’ll do it tomorrow” mentality. I am only 36, almost 37. That’s quite young. It matters not however. I’ve been diagnosed with stage 3 COPD this past Friday. Specifically, my doctor informs me that if I don’t quit smoking, within months, I’ll be on fulltime oxygen. And I’ll be on a lung transplant list before I am 40.
The feeling that came over me while that doctor was saying these hard facts gave a new definition to shock in my book. It turns out, there is no time to waste. Having the “I’ll do it tomorrow” mentality can be absolutely life or death.
You begin to look back on each and every opportunity that you had to change your ways, or your situation. Even times when you could feel your body beginning to change in a negative way. Yet, you ignored it. Or you think back on the hundreds of times your grandparents lectured you about certain things, but you just rolled your eyes as you searched for the exit door closest to you.
But, I regress. Thinking back doesn’t change where you’re at now. So, you must focus on the hard work ahead of you. You must not dwell on anything negative. Especially those particular things that will absolutely get in the way and hinder the process towards a possible recovery and/or extension of life.
So, I write, as I always have. And I will continue to. Being as raw and open and honest as I possibly can, sharing my progress and even the rawness of things if they get worse, God forbid. And I won’t give up.
I saw clearly the remnants of forgotten cigarette butts in the scattered rocks as we drove through to get that coffee. I was thinking to myself how many years some of those butts have been buried there, long after their victims have been gone. I dig into things and overthink if I’m not careful.
The voices of aggravation on the other end of the speaker from a person just there to do a job so they can pay the light bill that’s been way over-priced since the frigid dropping of the temperatures. Or the teen coming up in age, just working for that extra pocket cash, definitely not wanting to spending it on anything except the material things they feel deprived of. All thrown into one building working and serving the masses.
I feel all of this as I pass through the line, my daughter in the passenger seat. I feel nostalgic. Fully aware of everything in every moment. Extremely grateful for each and every second. Even though we recently had a therapy appointment and have to go back next week because the therapist is concerned for my daughter and is setting her up with psychiatry. Still, I am so grateful. Unable to allow myself to feel anything else because of the chaos that has tried to take me down for so long. I’m on the front lines of a battle like no other. And for anyone who knows me, there have been so many battles up to this moment. They seem like a staple for every chapter that I am constantly trying to break free from.
I am doing today with a smile on my face. Because I choose to. Even through each moment of heaving for air. Because I want every moment. I want every second.
I just swopped places with my daughter and now I watch as she drives. For a moment, I see my little girl. Her little smile. Her giggle. Except for this current version just yelled shit as another car got in her lane. lol. Still, I see her. I remember every single moment. She’s growing up so quickly and I am here for it. She’s 16, and will get her driver’s license in a couple of weeks. 2 years left in school, and the future awaits her.
I want to be there to see the incredible things she is going to do. I want to hold grandbabies, and see that’s mother’s love in her eyes. I want to see her do better than I did. I’ve never been that parent that said, “I hope your child is just like you.” I wish a whole different life for her. I wish peace for her and her children. And every dream come to life.
I’ve also never been that parent who says, “No one will ever love you as much as I do, or the way that I do.” That’s crazy. This world can be incredible. I wish more for her. I pray she finds someone that loves her bigger in ways that are more than a mother’s love can surpass. And I pray that they give her the world she deserves, which is bigger than anything her or I could ever imagine. I’ve tried so hard to work over these mountains so I could be someone she could be proud of and even maybe one day, would want to take a lesson from.
But lately, I have realized that I want her to be completely and totally herself. A whole new chapter. Breaking the cycle of this chaos. She is so incredible and adventurous. That combination in life can be so exciting and limitless. And as her parent, I am excited for all of these adventures.
We took the long way home, stopping too long at stop signs of course. The whole time, I’ve grasped the oh crap bar for my life. Even though in reality, she’s a good driver. And she has always picked up on everything so quickly. I just can’t let go and give control to anyone, and it’s something I am still working on. It’s something that frustrates her greatly.
We arrived home. Spring is in the air and I soaked up every single second of what was left of the daylight on the porch. I could hear my daughter singing in the basement in her room so I snuck to her window and started to sing with her, giggling. I couldn’t help but peak in on her. As teens, they don’t come out of their lairs as often as we would like them to. So, honestly, every chance I get to come up with an excuse to peak in on her or tell her I love her, I do it. Life is so short. I want her to know it. That I love her. Because I love her so big.
The grass is turning bright green again. I try and focus on that in this moment, as the thoughts of upcoming specialist’s follow-ups for my many ailments come creeping up on me in the coming days. I’ve spent a lot of time pushing back fear and trying to live in faith. It’s hard sometimes, if I am being honest. Some of the answers I get could change my entire world, or my daughter’s entire world, or both. So, each day, I am just living in every moment. Loving as hard I can, harder than I ever have. I am accepting hugs, which I have always struggled with as a touch me not and never accepted before. Even the closest people to me have jokingly asked permission before hugging me in the years up till now. However, in this new chapter in my life, I want love in every form. All of it. And I want to give it back, in every form. Freely and wholeheartedly.
We can’t change any bad or good news we get. We can’t change how long or short the time we have here on this earth is. And we can definitely not change the yesterdays that got us to this very moment. Tomorrow, no matter what the day brings, I will embrace what comes, with my everything. And gather all of the remnants to take with me, wherever I may go…