Whirlwind of Frenzy

Current soundtrack: Nirvana’s “Heart Shaped Box”

I am confused. I don’t know what to write anymore. I’ve got a hand written journal and gratitude journal. I am feeling overwhelmed yet I’m feeling a tidal wave of peace come over me.

I feel my friends’ and family’s dispare; I weep for them and then I have to center myself because I’ll be down with them in no time. I’ve had to learn that my empathy needs to be pulled back several degrees to only register as sympathy, or I’ll dissociate. I offer my love, my ear, my advice. My love absorbed, but my advice not often taken, leaving me feeling useless to them; So, I instead apply it to myself. My daily self care and mindfulness techniques are once again, because I need to be there for them. All of them.

I’ve moved to a place in my mind where I think I might survive. But, then just as I reach the summit of happiness, something I’ve yet felt, will I die without the oxygen so high up?

My existence is now lived daily. Now. With the occasional glimpse of the next week, but not the far future. I’m overwhelmed by parenting and my children’s melancholia most days; waiting for summer, waiting for freedom from forced interaction with peers they don’t connect with and fear of retribution for not completing a project on time; their reaction is as if the teacher is going to loom over them and ridicule them in front of the entire student body. They are so spooked, so much like myself at their ages. But, they have had a completely different experience as children than I ever did. But, their mommy has been sick, whether mentally or physically, most of their lives. Does that inherently affect them in the way that I was affected by my father’s absence when he was out using drugs and coming home “sick”. Am I the cause of their stress and anxiety?

They are surrounded by little people that desperately want to know them as a friend, both popular and lonely souls. I was very unpopular and lonely, so how is their school existence so similar to mine?

I’ve been working out my feelings of youth and young adulthood in my dreams. I literally work through difficult situations, in different circumstances, on another plane, but with the same characters. I can relive experiences and immediately take a “road not taken” previously. Over weeks and months, I’ll have worked out a resolution. I know that I’m healing, and there is an Orchestrator, but today, on this Earth, I am present.

I’m going back to work at a ketamine infusion clinic quite soon, but not really in a rush. I shadowed last week and I recognized myself in the patients that were being treated…flip that switch girl….empathy has no place in this work. Sympathy is as far as I can safely go. I’ll be working with the pain management patients, not frequently the mental health patients. Merely because my level of experience is crucial for the pain infusions, and I believe, because our God knows that I’ll need his help.

Writing this blog sounds sad and not at all like I have peace washing over me. But, as I bring my attention in toward myself, I can feel my breath, my heart beat and my soul pulsing because I have been given the gift of belief in a higher power. One that I once took for granted. My God has evolved in my mind, but He has always been the same omniscient God that so many people think are different gods. I draw peace from other peoples’ gods, knowing that their “gods” are fully included in my own. The only God, He with many names, calms my soul. He provides me with that I so sorely need….my love, the love given to me, and my various experiences and outlets using art and music.

For today, I move forward. I live. I look outward and inward and I fully feel my world and I am sympathetic and pensive.

Preface

The Story- Brandi Carlyle

During my Women in Literature class, more than two decades ago, a paper that had been returned to me had a common word encircled with a purple pen and was labelled “cliche”. It was the first time I had come across this word and understood the meaning. I’ve contemplated writing my story, my stories, for a long time, but that word “cliche”- in a world with billions of people, certainly millions share similar stories of addiction, loss, love, insecurity, depression, fear. Who would want to read my interpretation of what I’ve felt is a life lived in my chaotic headspace? Music has always allowed me to express my angsty memories or feelings with tears or dancing, even so it has set up my mood. Writing my stories as they come up with the music that ignites that memory or feeling seems like the most logical way to unravel my story. ToBeContinued….

Quiet Playlist

There are innumerable small ideas and facts that surround my life that don’t make my story interesting, but collectively add to who I am now as I enter my 40s.

I’m an empath and music melts me. A really great cover of any song allows me to relive an experience in a different way.

I’ve always felt like I’m number 20, even 10, to people that should count me as at least somewhat important 1; my pager “number” was 27 because of all the beautiful and tortured souls who died at the ripe age of the same number.

I was born in the late 70s, and grew up in the 80s; I had an identity crisis matching the general population at the time. The 90s defined me more than any other decade as I went through puberty, angsty and confused and frustrated. But, it was also when I fell in love with the adrenaline that comes with newly found freedom and rebellion. I met all of my most important people in the 90s besides my parents and sister. TBContinued….

I have a Christianisms blog, I forgot about it and I never created one for Calvin, but his are usually PG-13 lol. I’ll start today and add past ones….

Today’s gem: “Mommy!! These dogs are acting like anuses!!” age 7 Feb 12 2019

I should be devastated. But, I knew this news was coming. I have a sixth sense within my body. Mix in anxiety and usually my sixth sense ramps up a bit. Today, I’m sure I’ll die in a year or two, or sooner.

I don’t know how to tell my aunt that her incredible donation and sacrifice, graciously giving me her kidney 6 weeks ago, is diseased already. I feel the negativity and suicidality washing over me. The look on my husband’s face when he’s overwhelmed and angry with his circumstances. The morning vomiting, the racing heartrate from too much pred

I learned about my original kidney disease exactly 2 years to the date on October 24th. I was sitting outside of my kids’ school, waiting for their precious little faces to appear during the Halloween parade encircling the damp field. I became frantic as the cardiologist said I needed to see a nephrologist. Of course it was after noon on a Friday. I was sitting on a 4×4 that separated mulch from sparse grass, calling every nephrologist on Google within 20 miles to see if I could get in under the Friday wire. I was able to get a Monday morning appointment. I was so anxious that I went to the emergency room, where I was told that I have a chronic disease that could not be treated in the ER, which I already knew, but I just wanted reassurance, which I did not get.

So, with the progressiveness with which my disease progressed to dialysis, I only had skepticism and an iota of hope that recieving her kidney would be the end of this pain and mental anguish.

I know it sounds light, but for me it was amazing. I haven’t written in a while because I’ve been very sick.. so sick that I’m on dialysis now. I skipped over all the terrible months of pain and depression in my blog but not in my life. As I put that part behind me, I just want to remember and praise the enormous support system that we’ve had including our parents and our neighbors, who have made meals for us and watched our children through hospitalizations and even weeks where we were both infirm. And then there’s the wishes and prayers of friends and family, and unknown and innumerous strangers in churches and communities that have no doubt gotten us through to today.

Today was a good day. Mundane, but I felt normal. Unless you’ve ever been chronically ill for a long time, you wouldn’t know that striving for normal is the end-all-be-all, the purpose, the Holy Grail.

I started today by helping my children get ready for school, and walking my son to the bus without pain or encumbrance. Afterward, I was able to drive myself across town for a doctor’s appointment for the first time in 4 months. Today, I felt happy. I spent a large portion of my day telling Mavis not to dig a hole and to leave the bunnies alone, so I did have a lot of down time, but it wasn’t in my bed. I was able to share time with my husband while he ate lunch. I sat outside without back pain or my feet and hands going numb from poor circulation or severe anemia. Today, when my boys got home I had the motivation and energy to follow them to the corner and provide instruction on road rules for riding their bikes & cleaning up their mess. Today, I was able to say, “Mavis let’s go for a walk”. I was able to laugh at her ridiculous phobia of yellow signs without breathlessness. Today, when Matt got home, I walked out the front door and jumped in the car, and said let’s go for a ride. It was a ride around the neighborhood, checking out the kids’ Spring water sports and giggling at goofy dogs and random sightings, but it was quality time, normal time. We laughed and shared our day and this may sound boring to you, but after this journey from severe illness to some iota of health, today was a perfect normal day.

That weird disease that I had didn’t respond to medication. With the help of 3 diuretics, my weight is normal, but I’m still so sick. I essentially got canned from the ER in April for being so sick and not knowing my limitations. I deserved it, I was too sick. So, here I am, 10 months into a rare disease and my kidneys are in their last legs. No diagnosis, just a “perhaps”. My nephrologist and even the team at NIH are at a loss. I test positive for this or that and then they say, “Um, nope, that’s not it either”. Dialysis is a common term used in my mind now that my filtration rate has plummeted to 20. Death, even more so. But, that is still a long way off, right? Matt doesn’t let me think that way much. 

Our neighbors came by last night and talked to us about visiting their doctor in Boston to rule out amlyloidosis. So, I’ll oblige, but I’m afraid of more of the same. And how exactly, logistically, will I survive a full day of traveling? I barely last 2 hours at home doing nothing before I need to go to my bedroom and lay down. My body is broken. I’m so tired. I’ll keep pushing though, for Matt, my boys, my family.

It’s been a year since my dissociative period. I feel like my drive to accomplish is empty. I don’t have mundane tasks on my to-do list. I have thoughts, like yoga, but then that thought goes away. And I lay in my bed and seriously have no desire to get up and accomplish, no desire to enjoy the day. I have a lot of things that I’d like to do, but the tasks feel so monumental. Visiting friends, going to lunch with anyone, drawing. I have this swelling in my chest when I think about drawing or creating, but then that swelling turns into a lump in my throat and it feels too big. Gardening. I love it once I’m doing it. But,  I’ve a lot of planned nothingness.

Things do get accomplished. I’m not sure how exactly, it’s like I have this “other me” that gets shit done. I threw a pretty great party for Matt. I nailed down an agency job, took all my re-certs in record time, started working, nailed down a summer camp job for the boys and I. These things are significant. But, I don’t remember the process? My psychiatrist says that I’m too hard on myself, but I can’t possibly feel any other way when I’m paralyzed by my emotions and i can’t pick up my own kids from school because I had a patient that hit my empathy bone too hard. So, today, I’m fractured. And I have the opportunity of a  lifetime of experiences that pass each day that I have empty plans. I guess some people call it a rut, but I have huge intentions, implementation and planning haunt me. Here’s that throat lump again. I hope I can snap out of it. Like really soon. My life is withering and so is my soul.