Feeding A Hungry Soul

The past few days my soul has been screaming. It’s hungry. Starving! Famished for creativity.  I love to create. It doesn’t matter weather it’s a homemade dish from scratch in the kitchen, old world artisan breads, crosshatch ink drawings, pinstriping and painting, or even the visualization and mind set to create videos for the hot rod shop, or thinking of different and complex paint schemes and car builds. I crave the need to create. My soul wasn’t going to allow me peace, until I listened and allowed the art to flow and release.

Tonight I listened. I grabbed a few snacks, cranked the music up, and grabbed my pens and some paper. I knew what was coming, so I grabbed some Kleenex too.

Often when I crosshatch my little Skullie drawings or create some macabre art with my pens, I include an original poem with them. It’s part of the process. When I’m drawing and releasing, my mind is finally focused on just this and the words that want to flow with it.

Normally my mind is in a constant state of multiple thoughts. A monologue of creativities with commentary voices of every scenario, everything I’m doing, and random babbling. At any given time my brain is in a thousand different locations, hosting hundreds of subconscious conversations and decisions or ideas that are fluttering about. Sometimes they even have fun little accents.

At times, I am able to shut it all completely out and focus on what’s right in front of me. That only happens for me when I’m making tantric love to my husband, and the entire world ceases to exist outside our bedroom walls.  Rarely, and usually when my mental health is hitting bottom, I’m able to lose myself entirely into a piece of part. I forget how badly my mind needs that release of the chaos. Just for a bit i get to see what’s right in front of me.

I feel the urge to create all the time, but I find myself feeling guilty if I choose to give it my attention.  I understand how an artist or writer can get lost or wrapped up in their work for days, weeks, or months. It’s easy to see how they forget to exist outside their creative bubble. You can dive deep into your art and creations to forget the ugliness of the world. Why would you want to come back from that? Perhaps that’s why I choose to stop and step away from the world when it’s my last mental resort. I can’t focus on anything else and the world I see around me is crumbling, so I must loose myself, create, and release.

Once I’ve managed to put a piece of my soul on paper or a canvas of sorts, I feel like I can breathe a little bit better. The world around me is still noisy and chaotic, but I can manage instead of drowning in it.

I think I need to dedicate a little more ‘me’ time. Time to myself that I can create, and where I don’t feel guilty stepping away from house or work duties. Rob and I had spoke about making the basement my zen area. An area where I could escape, do yoga, listen to music, paint, draw, and just escape the world if I needed to. I think I’m ready for that.

His Love

Not a single soul had ever understood her the way he did.

His gaze would dance across her face even in her darkest moments.

His caress the only comfort when her world was ending.

His arms the saving grace she needed to lose herself in.

He loved her, despite her many flaws.

He loved her, despite her being broken.

He loved her for who she was and always had been.

He only wished she would see herself as he saw her.

©️ Kandi Blaze 2020

Surviving and Yet Another Medical Specialist

Surviving. That is usually my response when someone sees me out and about and asks how I’m doing. It’s the best answer I can give. I’m surviving the moment.

Yesterday I had a few good hours and was able to take my classic truck around a few blocks while I enjoyed the streaming beams of warm sunlight.

The day originally stated off with a scheduled MRI of my brain. I’d been rather nervous about this as I’ve been experiencing some questionable and concerning issues. My speech has been slurred a bit, I often stumble over what’s in my brain and trying to come out my mouth... I can picture it but can’t recall the words or how to form them.  My memory, including some cognitive skills were struggling way beyond that of a normal brain fog. To top it off, I recently began getting headaches on my left side, and seeing changes in light and my vision. I kept telling myself that it was just malnutrition.  There was enough concern the doctor felt an MRI scan of my brain with and without contrast should be ordered. We were told in 48 hours we could expect the results back.

Less than four hours later the results were in. Abnormal. What?! Can I please just have one thing come back and say that it’s ok? Nothing was found! She’s in the clear! Of course not. Abnormal. Ha! Story of my life.

“There are multiple small foci of hyperintensity on T2 axial imaging. Image 14 of series 5, in the left subcortical white matter, which are nonspecific and could represent a small focus of demyelinating or post inflammatory reaction.” 

 The good news? I don’t have any massive tumors and I don’t have an aneurysm! The bad news? The scan didn’t come back in the clear. You always want a brain scan to come back clear of any abnormalities.  There are signs and concerns and they just happen to be on the left side. So what does this mean? It means I now have another specialist to add to our growling lists of doctors, specialists, and specialists for the specialists. We are in the process of getting the appointment set up with a neurologist in Mansfield. Finally! Something closer to home. That unto its self feels like a small victory.

Thankfully yesterday was a little fuller of life, as today I’m confined to the house, but mostly the bedroom. I made it to the bathroom once and ended up doubled over on the floor due to the excruciating pain the pancreas has me in today. I can’t even put it into words. Today i can’t even muster the energy to cry because my body is too physically exhausted from the continued state of it fighting itself.  Odd moans that I can’t control mumble, muster, and sometimes bellow out.

Days like today, pharmaceuticals are not the answer. You’re too miserable to deal with the spiraling side effects that overall worsen the experience. As terrible as the pain is, and it is inhuman, it reminds me I am still alive. I’m still here, clenching on to hope that with my rare case, some how, some way, a panel of specialists will figure a way at a better the quality of my life. My case is incredibly hard with my past and current medical battles. When you have specialists from all around that have gathered to discuss your particular case and medical history, and they are still baffled as to how you’re still alive, that speaks in volumes.

They are trying. We are trying, but pancreatic disease in all forms is still such an unknown, let alone with my oddities of medical battles and extensive history with the heart, lungs, autoimmune, past cancers, surgeries, and everything in between. I honesty don’t know why the hell I am still here. I hope there is a grander plan than this, for me, and those around me watching me die.

I’m incredibly tired of just surviving.  I miss the hummingbird I used to be. So full of energy, life, and never letting anything stand in my way. A constant go, go, go. I had battled before, and I have lost greatly. It taught me to embrace every moment life offered and to celebrate it with passion, enthusiasm, and love.

I would give almost anything to have that chance at living life again.

Kandi Blaze McCrea
02/04/2020

An Elaborate Dance with Death

“Today my Soul Remembered You”
Drawing by Kandi McCrea - color by Barbara Barnes

There’s the good days, and no matter how good they are, how happy you feel, how decent your body maneuvers that particular day, how many smiles overflow your face, the bad will come. You try desperately to prepare yourself for it. You know the excessive shaking, attacks of a-fib, the not being able to leave the bathroom or bedroom for hours on end with your stomach and pancreas, the continuous surges of inhuman pain the consume your very state of existence are coming. You can only hope you got your reserves up, because if not, this could be it.  It, the pain, the emotions, the everything, and it’s no longer just confined to a particular area.  Your terminal state of degrading health hits you like a head on collision agains a cement wall. You’re pretty sure a crash test dummy has experienced less pain.  Despite that, your brain tricks you into thinking they, the next round, can’t truly be as bad as the last time, let alone worse. You can’t possibly spiral out of control worse than the last time. Then it comes. Bam! Crash! Surprise! Here I am! The crippling moments and days of autoimmune pain, combined with your pancreatic disease, your heart crap, and now your in-home  breathing treatments from your COPD, just to list a few.

But wait!  Like any good salesman, there’s more! So much more. I want to go into details about all of it.  Every fucking millimeter of my body and what it’s doing. My brain wants to analyze it, even if we know the answers. I feel like I have to continuously vocalize every moment of what I’m going through and be descriptive about it, and I don’t know why. I don’t know if it’s a coping mechanism, or because I’ve been in relationships in past that undermined my health and pain. What I feel like it’s doing though is dragging everyone down with me. Who wants to hear you constantly complain about every movement, every breath, and why it hurts, and why you’re sad, depressed, and overwhelmed about it? They can already look at you, see you’re unhealthy, and know you’re dying. Every new, little, or preexisting ailment that comes I feel I must speak and be vocal with. I look at my spouse and though he’s full of compassion, I know he’s mad. He’s mad at the situation, mad that he can’t fix me. Mad at the accumulation of ongoing expenses that will still roll in long after I’m gone.  The dying wife he’s watching wither away into nothing has to be incredibly hard on him. I’m sure he misses the smiles, because I know I do.  Sometimes when I find myself going on and on complaining, I just look at him and wonder if thinking or hoping I’d just shut the fuck up already. It’s what I think to myself sometimes. I get tired of it, because I’m living with this every second of every day. I don’t get a break from not dying. I don’t get to take a day or moment off of knowing if this is my last day. But the pain.... that’s what I’m never truly free from. The emotional and physical pain are beyond anything I’ve ever experienced, and those that know me, know I have battled greatly and lost deeply. I assure you, I have experienced pain.  We’ve tried all outlets with pain, and some days, no matter how strong the pharmaceuticals and natural pain meds, it’s not enough to take away the physical, and then those damn demons start dancing around in your head.

Today I don’t know how to push through besides this. This right here. Expressing myself. Today, the writing is literally saving me because the demons have grown dark enough that I can’t see past the current physical and emotional barriers.  My brain can sometimes be my best friend with the creativity, continuous thoughts on creating, visualizing, dreaming, and all the things that come with being an artistic soul. Then, there are these days. Days that I hate me. I hate this disease, what it’s done to my life, my physical body, my health. There are days when I’m so sick I can’t physically function and then it happens. My brain is no longer my friend, it becomes my worst enemy on a self destructive path. I’m already an over analyzer and micromanager, so when the darkness consumes, my brain continues the patterns of extreme details, but unto everything that’s detrimental and unhealthy.  The feeling of being a burden sets in. The harsh realities of your future, or lack of, come crashing down. 

I usually and finally cave to the physical and mental exhaustion and the spiraling of emotions set in.  At this point in time I’m usually too weak to do much of anything besides be in the bed, alone, with my thoughts.The 92 pounds that I currently am struggles to get into a comfortable position in an old bed. I doubt there will be a new bed before I’m gone. It’s something I’d give almost anything for, but I’m watching the medical bills and current state. I really don’t want to die in the bed that my husband and his ex wife used to sleep in, but that’s where I spend much of my time. Yeah... things no one else thinks about, but when I’m in this state, that’s the level of details that my mind spirals around. 

I have so much planned for this year. I couldn’t give in and plan 2020 by staying in bed, dying, with no hope. Fuck me! I’m not going out like that! That’s why I push so hard, despite everyone’s orders. I don’t want to go out this way! As much as I want to push myself to the limits, and I do, I also find this completely opposite feeling when I’ve reached the level of today. In bed, afib and tachycardia going crazy with their spiraling effects, in-home medical breathing treatments and I still can’t breathe, the rheumatoid and osteoarthritis making it extremely difficult to move. I feel the skipped beats thumping in my throat and chest, the blood pressure crashing, head throbbing, and I’m tired. So incredibly tired of fighting and pushing today. 

The darkness is here and the full of life pin up rolls over in bed, knowing she can’t give up, not for herself, but for others that aren’t ready. Days like today, I am ready. I am beyond ready to be free of this.  Days like today I don’t feel strong, I don’t feel brave. I feel like a coward because when I roll over I pray to my ancestors for this to be my last breaths of life.  I pray they will end the suffering because I am not strong enough to keep pushing like everyone thinks I am. The sicker I get the more I understand why there are countries and medical professionals that believe in assisted suicides for terminal patients. Some say that would be weak. No. No, sir, that’s the bravest battle they overcame and they left this world with dignity. 

When you reach the level I have, your perspective often changes. Much of what I have felt throughout my life is coming full circle. Every day I am faced with new challenges. The biggest challenge is pushing yourself. Not giving up on yourself sounds so much easier than it really is. Sometimes I have multiple episodes in the same day of the ups and downs. I’ve got this! Even though I’m dying, I’ve got this and I’m going to die with grace and beauty. Today, I don’t have this. I don’t even have a spec of it. Yet some how, some way, I will manage to pull myself together enough to make it through until that is no longer an option. I can’t give up. I can’t give in, and I have to keep planning as though my life will be long and full. That’s not easy, but I have to do it for me. If I cancel the events, cancel the racing, cancel the emcee work, then I’ve already given up on myself.  That’s why I push, even when I can’t see past the next five minutes.

Today I write to make it through. I don’t write this for you, I don’t write for likes and reviews. I write for me, so I may pass the time in hopes that this release will eat some of the darkness away. 

If you are following my blog and health, thank you. I know it’s not easy to read, it’s very raw. I can not sugarcoat death. Death is not prejudice. Within the same moment I have watched my newborn son take his vey first breath of life and within minutes or less, he took his last. There is no such thing as being spared because you’re young or lead a life of purity. When it’s you’re time, Death comes for you. Some how, I have walked the line with Death before and now we dance. It’s becoming quite the ballroom for our elaborate dance. 

Xoxo,

Kandi 

My Cage (poetry)

Kandi Blaze - Image by Frazees Photo Stash 

“My Cage”

I often wonder what it is I am hiding from? Why I allow copious amounts of fear to consume me. With death I have become far too logical and comfortable for most to bare listening. I find conversations about our mortality to be rather delightful. The more I think about my demise, the fuller I feel to life and living it.

What am I running from? The tingles in the base of my skull turn to my pores excreting sweat, as my heart skips beats and pounds rapidly. I can feel each beat thumping in the pit of my stomach and in the sockets of my eyes. It’s eating me alive.

Everyday the feeling haunts me, it rears it’s rage. A feeling of failure keeps me locked up in my own cage.

©️ Kandi Blaze

Image and design by Frazees photo stash - Jason Frazee. I absolutely love working with Jason, and this set was exceptionally interesting and artistic. The set is an artfully done nude series of images to reflect the soul, the rawness, and maturity of life.  We did a few different styles that day and several of the images I felt compelled to write a short and expressive story or poem with.
Thank you for being a fan of my page and following my adventures in life. I hope you enjoy these images and some of my writings.
Xoxo,
Kandi

It’s Just Me... (poetry)

Kandi Blaze - image by Frazees Photo Stash

“It’s ok,” she whispered, as she invited me in, “you’ve been here before.”

I don’t recall this place, but her presence was hauntingly familiar. Confused and weary whether her intentions were benevolent or malevolent. Why do I feel so strongly to follow her? Why is the pain in my very soul of existence pulling me towards her?

I’m climbing. I can do this. Keep going. I just have to.... I just have to reach my hand out and touch her.

I’m screaming, “Why?! What is happening?”

I can’t catch my breath... It’s getting darker. My voice races, “Where are we going?! Please?? Why are you doing this?”

“To whom,” her eerily voice whispered in the darkness.

My eyes finally adjusting to a light coming from the corner and I look around. There is no one here but me. It’s just me.

©️ Kandi Blaze

This is part of an artfully done nude set I did with Frazees photo stash - Jason Frazee. I absolutely love collaborating with him and his wife, as they push and break the boundaries with their art and photography.

What An Honor It Would Be To See 40!

After a long day and cuddles with the grandson, I thought I would go through some photo albums on my computer and internet files. You see, my 40th birthday is coming up. Something I was told in my mid to late 20’s I’d never see.  There was a while that was true, and then we found the cause of my illness and were able to treat according.

Concerts! Left to Right: Kandi Blaze, Ivy Electric,
Chevy Cheyenne, and my beautiful daughter, Destiny. 

In my 30s I gained hope. My life was changing, my child was mostly grown, I wasn’t the same woman, but I remembered the girl I once was.  I wasn’t so sick all the time, actually I looked pretty healthy, despite the immune issues. I had nice curves, healthily cheeks, and was full of so much life. I was a hummingbird. Go, go, go! Couldn’t keep me down, because id been there. I had to live every minute. I needed to experience life. Soon I remarried and was incredibly blessed to be married to my hero that always tries to save me. I was now a grandma to the worlds cutest and orneriest boy, and for some reason he reminded me of my dad. 40 was going to happen! I was going to reach a mile marker that I once thought would never be achievable. Life was truly fantastic.

April 3rd, 2020, I am to be 40 years young. An age most dread, look at as old, or the downhill of it all.  A little less than 3 months away. I want nothing more than to be able to celebrate this day. This monumental moment in my life that I never expected to see, and I know isn’t a full guarantee. It’s never felt so incredible close and yet there are times we not sure it’s truly reachable. 40 has such grace, pause, and maturity if you’ve learned that life isn’t full of mistakes, but lessons learned and not worth repeating. 

1998: My father Ken Cooper (1942-2009), my Grandmother
Mabel Cooper (1911-2006) Kandi Cooper (that would be me),
and my daughter, Destiny. 

Tonight, as I went through those photos, originally planning to create a quick birthday video with pics and clips, I began seeing the healthier vessel I had been, seeing the people over the years I’ve connected with, loved ones, lost friendship, smiles and hugs from those no longer living in this realm with us. I couldn’t hold back the tears. I wanted to be happy for so many connections. So many beautiful faces and smiles I’ve shared with so many of you. I am humbled at many of the relations I’ve had. Sad and sometimes angry at the loss of friendships. I grieve for the dead, but there is comfort in reuniting our souls.

I also realized I’m the only one that knows where all these images are, what music is my favorite and expresses my personality and life. The tears fell incredibly hard when I watched Rob and I shove cupcakes in each other’s faces at our wedding. I laughed and reminisced at the video clip of us shop ladies being in a Dodge drift thrill ride. These were the clips and images I wanted to share with people I made memories with while I was alive! As hard as it will be, I plan on creating a beautiful memorial video of those clips,  images, and memories with so many incredible people over the years. And no one needs to scramble and sit for hours or days and decide what images I would have liked. Here’s that damned double edge sword again. This is hard, but with rare opportunities like this to express art, share memories, and leave one last footprint at my final goodbye, it just seems right for me.

Wow! To be 40. What an honor that will be to hopefully see.

Kandi
01/21/2020

Don’t stop believing in love

2020 is going to be an interesting one for us! Lots of good with the bad, but I need the good and events to weigh out the bad. I am beyond thankful to the places and people not giving up on me. You are my spark of light in the darkness and I won’t let you down, but please know not everyday is easy, just as not every day is super dark. It’s a rollercoaster some days, but when I have events to go to, people that drop in, or shoot you a message to ask how you are, that’s priceless. I feel the love and I thank you for it.

I’ve been called brave, strong, a faker, an attention seeker. I am none of these. I am simply human, living with and dealing with a chronic and terminal illness, but please don’t give up on me. I still hear hateful rumors. I can’t stop people from believing what they want. Perhaps it makes them feel better if it doesn’t exist. Perhaps they can justify their actions and words by telling themselves it’s all for attention. Oh, how I wish this was true. You have no idea how badly I wish this wasn’t happening. You have no idea how badly it hurts to ‘prove’ you’re sick to those that once called you friend or family, and even when you show them over and over, they roll their eyes and delete you out of their life.

And yet, people can be so incredibly kind and compassionate. We are capable of so much love as human beings. So much love to give. It’s truly limitless and in an abundance all around us. I’m trying my hardest to spread the love I still have, because I feel like I have a plethora of it to give. Love. It doesn’t cost a thing.

I’m going to post this image from my family doctors office today. This isn’t from my explosion of specialists, this isn’t my Encyclopedia of a medical file... This is just a brief and quick rundown/print off of a few things... life changing, altering things. Don’t be sad. Be proactive! Fight for the cures with me! Love those that are dying! You think it’s hard on you? It’s harder on them.

Also, those are my feet today. 😂 Biscuits exploding with edema becasue my heart is having some fits and battling with circulation. No, it’s not made up. Nope, not in my head. I’m standing up for myself. I’m not going to allow the nay sayers and haters to put me down further than I already am. No, I’m going to do what I always do and push like a mo-fo! I’m booking my calendar up for the season. Yes, I’ll be on stage and a guest at events, even if I’m dying and under 100 pounds, and you know what, that’s freaking amazing! Ahhhhmazing! Don’t stop believing in yourself.

Just because others want to see you fail, doesn’t mean you stop pushing and give up. You fight even harder, harder than you’ve ever fought in your life. You’re fighting for love. Don’t stop believing in love. ❤️

Kandi

Multiplex of Specialists

I was supposed to see yet another specialist in the afternoon that’s nearly an hour and a half from home, but they scheduled for the wrong doctor. This particular one is a special-special gastroenterologist, that my oncologist referred us to.  We’re told they are supposed to be doing or discussing some form of genetic testing to see if there’s a link between my diseased pancreas and cystic fibrosis, which runs on both sides of my family.

Specialists. I despise that word. I’ve seen more specialists in the past 6 months than most see in a lifetime. Seriously. I’ve dealt with a variety of specialists before since I have a variety of immune issues and spiraling health from it.

Let’s start with my Cardiologist, that’s my heart doctor.  I see him because I deal with Afib and tachycardia. My heart likes to go out of sync, have crazy out of rhythm patterns, take long pauses, and other silly stuff. This tends to cause a sudden change in blood pressure, and a blood pressure crash, resulting in lack of oxygen, headaches, dizziness, slurred speech, and sometimes passing out. The normal medicine, beta blockers, are a no-go for me with my already insanely low BP that 3 out of 4 cardiovascular specialists have said a big NO for me on any meds for the heart with my health history and immune system.

I visit my Pulmonologist most frequently, as of now. That’s my lung doctor. Surprise! All that trouble I was having breathing and excess phlegm was diagnosed as COPD and asthma. No, that’s not fun at all.   Years in a body shop, diesel exposures as a kid, and about 18 years of my life smoking. I’m paying for it dearly, but thanks to a routine powder inhalant, an emergency inhaler, and natural breathing remedies, it’s semi-manageable, except the hacking at night. That’s annoying.  I promise you though, breathing is not overrated.

Oncologists aren’t a lot of fun either. Those are your doctors that deal with cancer. Cancer? Yeah, I’ve had both cervical and ovarian cancers at age 19, followed by a massive surgery and total hysterectomy. I was 6 months pregnant and miscarried right before I found out. I currently see another oncologist for the pancreas. Yes, the pancreas. It’s a dick. Well, at least it looks like one. Mine is extra special, just like me! Years ago my gallbladder was removed because it was in apathy, full of stones, and covered in some form of sludge like fluids. The gallbladder leads to your pancreas. My pancreas started off having acute pancreatitis, then chronic pancreatic flair ups, and now it’s diseased, calcifying, and no longer allowing me to absorb proper nutrients, breakdown enzymes, etc.... in term, all my doses of vitamin D and potassium for my heart weren’t getting absorbed. Hmm... There’s a pattern here. Eventually, if I make it long enough, it will become cancerous and be my demise.

Gastroenterologist is most definitely on the list with all my diagnosed stomach issues... Not only did I have the cancers prior but 6 years of C-diff went undetected and undiagnosed, until it wasn’t and I was almost dead.  One of the longest cases that survived though! It’s not really bragging rights.  Turns out you shouldn’t be given test antibiotics when your daughter has chicken pox and you’ve never had them yourself.  Years of my life we’re lost to big pharmaceutical companies and 28 different prescriptions, most were prescribed double and triple doses since they had deemed me ‘terminal’.  Now we are back at an extreme specialists that focuses on the pancreas aspect of gastrointestinal disorders.

Rheumatologist for the auto immune. I get one super power and my body attacks itself for fun.   How? What kind? Well... that’s what we get to find out! Supposedly all these years I’ve been diagnosed with Rheumatoid Disease, an immune disease that affects so much more than just the joints. Last rheumatologist I saw was in Dublin, OH over a decade ago, and medicine has come a little further in this department, but unfortunately not nearly as much as those of us suffering would like to see. I have an appointment in less than a week with a new Rheumatologist.

Ugggghhh! That a lot of Igst’s.

Weighted in at 94 pounds the other day at the regular doctors office. Don’t forget about the family practician! We frequent that, emergency room visits, and tons of blood work.  There is talk of some form of home health care and assistance so I can at least stay hydrated. They have talked about a possible pic line so hydration would be easier and maybe we could try some form of vitamins through the line.

To be honest, more than anything right now I just want some comfort. I want to sleep without feeling like the bed is a thousand fists with knuckles pushing and puncturing my boney body. Every night I lie down it feels like the start of a horror movie with the pain, sweats, and lots of heavy and vivid dreaming when I do fall asleep. Even on a cloud my knees protrude out enough that against myself causes pain and strain, and my arms across my ribs feel like anvils ready to crash through.

I just want to feel human again and subside the multiplex of specialists. I’m surviving, because it’s the only choice I have. ❤️

Kandi
1/12/2020

Sparks of Light in the Darkness

Sparks of light in the darkness are what keep you pushing. Those little glimmers of hope, or something to grab on to when you can’t see or don’t know if you’re going to make it. Events, races, possibilities of what could still be achieved, building my empire, helping and inspiring others; those are my sparks of light in the darkness.

Life is a continuous rollercoaster of events. It’s an ever flowing river of emotions with curves, bends, narrowing streams, and large falls. What keeps us pushing through the falls, the dark tunnels, and the bends we can’t see beyond? Those little sparks of light, and a hell of a lot of hope. That’s what pushes us forward. It’s fear that leaves us behind, makes us repeat the insanity, or perhaps we find a comfortable spot along the journey, and we stay a little too long while the flow keeps pushing. Life doesn’t stop around you. You’re here for the ride, so you might as well jump on and enjoy it the best you can.

Let’s get back to those sparks of light. The little things each day that make you smile, that bring you a speck of happiness, a spark of light in the darkest hour. It’s the things we all thing of most, our spouse, kids, grandkids, etc. Your sparks are personal and individual to each of us.  For me, my surroundings of hot rods, and those that understand and accept my obsessive car life. It’s my upcoming events, future adventures, and the outings with people that I get to share my story with and help inspire.

A spark can even be an event that I’m on the calendar to host or emcee, but perhaps they cancelled because of my health. Bummer! Double edge sword for both of us. These events push me, because I love the audience, the microphone, talking to lovely people, and when you lose that, the spark dims and disappears. That event you kept pushing for because you love it, the people, the place, the everything, it no longer needs or wants you, and the world goes on. Your light is literally dimming, and you lose that spark that was shining in the darkness. I really think this is one of my biggest fears, losing my identity, my sparks of light. I’m not ready for this part.

I need those little sparks of light.... I’ve been so sick. So sick that sometimes we don’t know of it’s going to be more than a few days or a few weeks. Then we have a few days where I pop back a little, i manage, function for a week with videos, work, events, and then one of the flair ups begin again. We know I don’t have more than a few years, if that.  We get that. But if we can get those reserves up enough here and there in the mean time, and not get super sick with the flu or a bad bug, I will indeed have a couple more years. However, the flair ups can last until I’m gone...this one hasn’t stopped, they dont know if it will, and if it doesn’t or I don’t get enough reserves when the next one hits, that will be my demise. Now you see why I need those little sparks of light.

Racing! Yes, drag racing is one of my sparks. Not just to be at the track, to race down the quarter or eight mile, like my father and his father did. Banging through the manual gears in our big block Chevy, feeling the torque pull me back in the seat, watching the metal flake glisten under the track lights. Yes, drag racing is one of my sparks. That’s my drive, my spark! I’m racing the Nova! The Atomic Fireball will have me behind the wheel at Dragway 42. That is where I got my spark of life and that I where I will finally throw some horsepower and lay some rubber!

Sparks of light make me feel alive. They give me hope, purpose, meaning. Sparks can even be people. What a beautiful soul someone must have if they are a spark to another.  ❤️❤️

Kandi

01/03/2020

And So I Write....

When you read, it’s the job of the writer to give you heavy descriptive words so you can paint the image in your head, or understand the perspective that’s being portrayed to you. As a writer and artist, you have the ability to over or under exaggerate your story. You also have the ability to leave certain parts out that you don’t want to share.

Humble. I want to handle this every day in the most humble of ways. That’s so much easier said than being done.  It’s easy for me to sit here with my fingers clicking keys, and tell you how humbling I’m handling this. I could flat out lie to you and make it out like I’m the classiest person in the world with dying, but I’m not. I’m far from it, but I’m trying.

I lost my shit the other day. I spiraled completely out of control, and I don’t even recall all of it. I simply remember being incredibly frustrated that I’m constantly trying to remember where I put something or what I’m doing. This goes above your normal forgetfulness. At times I forget how to place the ponytail holder in my hair after I’ve brushed it. It’s a common dexterity that should be familiar to me, yet I stand there with my hair in one hand,  band in another, tears swelling up in my eyes because I can’t recall how to twist, bend, and attach this stupid thing to my hair to hold it back. I despise being aware of it. The next time it’s all familiar and there isn’t a struggle,  it you never know time to time when it’s going to change.

I’m pretty sure I lost it the other day over keys. Yes, keys that I had been looking for and had in a specific place. I couldn’t find them and had just been looking for all my other ‘misplaced’ items that were right in front of me a bit ago. After ten minutes or more of searching I found out my husband had taken them to start and warm up the truck. I should have been so happy that he is incredibly kind and thoughtful. But no, I lost my shit. I just spiraled because I had spent so much time in sheer frustration looking for these keys, feeling like I’m loosing my mind, that I just lost it physically and emotionally and the meltdown began. I kicked boxes, I screamed, I ended up on the floor, covered in sweat while screaming, sobbing, and bawling.  I was likely snotting and salivating all over myself. All the while shaking, and I just kept repeating like a crazy person, “I can’t do this anymore! I don’t want to to this anymore!” Because I don’t. I fucking hate not feeling human, being in so much physical and emotional pain that the only resort is to finally cave to the pharmaceutical opiates. Then I’m a zombie. A medicated, disconnected zombie.

Frustrating is accurate. The mind games my body plays on me. It’s like being drunk and hungover but without any of the fun parts. I only get the memory loss, disorientation, and hellacious hangovers, but none of the great memories or fun regrets in the process.

I feel alone more than I should. I have the most compassionate husband the world could offer, and he’s a full-time career firefighter. I spend a lot of time alone. I love and adore what he does, and I wouldn’t change it for the world. It does however make it complicated at times when I’m so incredibly sick and he can’t leave a 24 hour shift. It’s something I will never blame him for, and at times, I love the quite house.

Through the past year, many of my friends have abandoned us. We walked away from car clubs and several events, for many reasons, but one of the main ones was hearing ‘friends’ or in most cases, catty women, accuse you of faking your health or doing it for attention. Yeah, I’m just seeking attention (inserts eye roll).  That actually happened, and I truly hope the people that chose to not only think that, but take it upon themselves to try to tell and convince others, I truly hope they don’t show up at my memorial to mourn my parting. Maybe that’s not humble of me, but it’s real, it’s hurtful, and I’ve experienced it first hand.

I’ve closed a lot of doors in my life and I use to reopen them. The last year or so, Ive found it incredibly hard, and often too scary to open new doors to allow new relationships. I've grown older, seen the actions of grown men and women that put partying in front of being real with the people that need them in their worst hour. I’m doing my best not to be a bitter person from it. I’m doing what I can to remain humble, despite the actions, words, and messages from others that I have received, asking me not to be part of local events or car shows, because of my non-traditional beliefs, or because i have gay and transgender friends. Yes, I have literally been asked not to attend a local and particular car show that claims to be traditional with their rods and customs. I was literally told I was not welcome to support their show with funds, exposure, or attending. I’m being judged for who I am and because I am compassionate with all walks of life. So in some ways, I suppose I am bitter because the friends and family that said they would be there for you through it all, abandoned us when we needed them most. At the first sign of truly being sick, we were told we were broadcasting it too much as seeking attention.   I’m not sorry we choose to step back from those that think it’s funny or acceptable to make fun of others health and life. We lost the zero fucks attitude, because when you have that attitude towards life and others, you lose your compassion and humanity and the rest of the world sees it.

I know I’m going to do this mostly alone. When Rob is at work, I no longer have anyone to call that can rush right over, or that can come to the store or parking lot when my heart has decided to go into afib. It’s just him. My small and scattered family doesn’t live close, and in the end friends visit less because it becomes hard for them to see you dying. It’s a burden they can no longer bare, so you do it alone. I have my Dalmatian, my loyal, loving, and always by my side, spotted girl.

And so I write...

Kandi
01/02/2020