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