I Heard The News Today

I woke up this morning to a message that was sent to me around midnight telling me, “I know you were friends with Bart [not his real name]; just wanted to let you know that he died after a confrontation with the police Wednesday morning.”

I wasn’t awake to chat back and forth, so I had to do some searching of news articles when I saw the message. There was actually quite an extensive write-up as well as video clips so I was able to get a complete picture from the law enforcement’s viewpoint of what happened.

The hard part was seeing pictures of his dwelling and recognizing the side of his building. Bart was so proud of everything that he did to fix his place up. I still remember walking through his door and smelling his split pea soup.

Bart and I weren’t close friends; in fact, the person that notified me of his death had known him decades longer than I had and was the reason we had become acquainted. But we had gone to the Renaissance festival as part of a big group, and we always ended up attending the same get-togethers. Bart was friendly and jovial, though he definitely had issues with drinking too much. He also could not control his impulses or anger; this certainly fed into a never-ending cycle of joblessness and financial uncertainty.

From what has been published in the stories online, he got a DUI on Friday night and was sent home in a cab rather than sent to jail. On Saturday night he drove by a deputy and shot him and prompted a manhunt/search. On Wednesday morning the sheriff’s department knocked on his front door and he shot himself.

The county sheriff is proclaiming this man to be an obvious participant in the bigger war on cops. I’m calling bullshit on this. Bart was in an all-out war on his own life.

Did he drink to get drunk? Always. He couldn’t get together with a group without drinking. When you’re middle-aged and you’re drinking every weekend (and I am guessing for him, every day), it’s obviously a problem. He tried his luck with dating, but he was always stuck in his 20’s there too, referring to women as girls and only taking pictures with the pretty random strangers with their boobs propped up, never really being less than insulting. Bart was a smart guy and had loads of certifications and degrees in the tech field, so he should have had no problem with landing well-paying jobs. In fact, when I was laid off, I visited his place and we chatted about our resumes and wages, and I was quite impressed with his in both areas – he could have afforded to buy my house two or three times over with his salary. But Bart had done and said so many crappy things in his workplaces that he had been blackballed in his current state, and finding work out of state was proving to be just as difficult.

The friends who were much closer to him had relayed stories about how in recent years and months, he would suddenly become angry and take off, or disappear for hours. If they were all out of town for a trip and following each other in their cars, Bart would somehow manage to leave the caravan and insist on his own route and get completely lost. He would become belligerent if anyone tried to reason with him.

Not that this means a whole lot, but he and I used to debate his support of Trump as a presidential nominee. Bart definitely had prejudices against people who were anything except white middle-aged American men.

So here is this guy who is doing everything he can to make his own life as terrible as it possibly could be – ruled by alcohol, void of love and understanding, built on a foundation of fear and ignorance. He shot another human being because he wanted to blame someone for something. He shot himself because he saw no other way out of the pit he dug.

I have a hard time thinking about him no longer being on this earth. I saw the destructive behaviors in him, but Bart was mostly friendly towards me – maybe because I didn’t have a long or involved history with him, or because I knew exactly what to expect. I hope that now his soul is finally at peace. I think about this often, especially since death seems to be around me a lot more this year, and I wonder if souls review their lives and their lessons like I think they must. (I hope that Bart can see the humor in me saying that my wish for him is to finally understand why Trump would make a terrible president.)

In fact, I wish I could interview all of the people I knew who crossed over in the past ten months and ask them what they have learned. What were they surprised by? What was the biggest reveal? Was it all worth it, taking on this human body and signing this contract?

Say It Isn’t So

Prince was actively seeking the help of opioid addiction specialists in the days leading up to his death, according to the Minneapolis Star Tribune. The morning his body was found, on April 21, he was scheduled to meet with Andrew Kornfeld, a staff member from Recovery Without Walls, a rehabilitation facility in California, according to…

via Will Prince finally get us talking about the prescription pill epidemic in America? — Quartz

Me and Prince

This morning after I took my bath, I wrestled into my purple bra and underwear, shoved my purple long-sleeved shirt over my head and torso and slipped my phone with its purple case into my pocket before heading out the door. I briefly considered taking my purple cane but decided against it because I knew I would be gone for about 20 minutes tops, which is the high end of how long it takes for the CSF to start pressing on my brain and making me wobbly.

Then the news started to trickle in: A dead body was reported at Paisley Park, Prince’s residence here in Minnesota. Just a week ago or less, there was a report that Prince’s plane had to make an emergency landing because he was experiencing some sort of health crisis, but he was resting at home comfortably. It was not a huge leap to assume the body was Prince’s, and it’s also not a huge leap to know that many of us locals are just plain sad about it. Of course he has a large following outside of Minnesota, but he was OUR guy.

Back when my dad was working on making a name for himself as a top-rate hair stylist in the very early 1980’s, he met Prince. My dad loved to name drop. He also thought Prince was a spoiled brat and didn’t hold back on saying so. Prince always traveled with an entourage (read: there was never a time he wasn’t a star). I later bragged to my classmates that my dad talked to Prince. I wasn’t afraid to name drop either.

The movie “Purple Rain” came out and the residents of Minneapolis/St. Paul (commonly referred to as the Twin Cities) were absolutely thrilled to be featured in a movie. First Avenue – “First Ave” if you’re cool – was forever galvanized as THE stage to play on thanks to “Purple Rain,” and who cares that the script was weak? The soundtrack was to die for! I mean, “Darling Nikki”?? Prince was so dirty! He actually talked about masturbation in a song and if any stations played it, the word had to be altered. How could such a short little guy get so many women to throw their panties at him?

When I went to the arts high school for my junior and senior year, I remember a boy who was trying to get into my pants saying to me, “Just give me a dark room and a Sam Cooke album.” I had no idea he was quoting a line from “Under the Cherry Moon,” another low-budget Prince movie that also starred Kristin Scott Thomas, at that point an actress largely unknown to American audiences in a film that didn’t have the commercial or musical success that “Purple Rain” did. I laughed when I finally did see the movie (on VHS tape!) because Prince found a way to infiltrate my love life as I’m sure was his intention all along.

In my senior year at the arts high school, I had a roommate who only played three albums: Nirvana’s “Smells Like Teen Spirit,” Weird Al (I can’t remember the name) and Prince’s “Diamonds and Pearls.”

I don’t remember which album the rumors were flying around for, but supposedly Prince actually recorded a woman getting off and put her “sounds” on a track. This was well before we could actually research anything on the internet. He is well-known for pushing artistic and cultural boundaries. I mean, who else would have a top 40 song called “Cream (Get On Top)”?

In 1996, my boyfriend at the time and I road tripped back from Albuquerque to Minneapolis and after a night of drinking with a friend and my sister, decided to check out Paisley Park. My friend had worked there previously as a security guard and offered to guide us with him driving his car and me driving my car just to show us where it was. Well, my boyfriend told me to pull into the driveway where the guard was stationed; when my friend saw what we were doing, he took off. My sister was pretty drunk in the back seat and pulled a blanket over her head, saying, “If I can’t see them, they can’t see me.” The guard greeted us, saying, “Can I help you?” My boyfriend leaned over me from the passenger seat and slurred, “Is this where Prince lives??” The guard straightened up and said, “I’m going to have to ask you to leave.” My boyfriend persisted, saying, “Can we take your picture??” The guard said again, “I’m going to have to ask you to leave.” In the meantime, my sister Heidi is quietly saying, “Oh god, oh god” in the back seat under the blanket. I backed up and managed to find our way out of the back roads of wherever we were; this was well before GPS and it was around 1:00 a.m. in a very rural area, and my friend was long gone, so it was no cake walk. Thank goodness I have a pretty good internal compass.

The same boyfriend and I relocated to Cincinnati and worked for a box office that was also a Ticketmaster outlet and managed to score tickets to two very different Prince shows. One was in Columbus, Ohio; the entire show started two hours later than it should have and we were already an hour away from home. Start time was supposed to be 8 but it was more like 10 and it was an opening act, then Prince came on at around midnight and played “Purple Rain” and we thought well shit, that’s it – but NO, he played for two more hours!!! The next day was hell because of course we had to work after taking an hour to drive home, but we got to see it. The next show we saw was very different, which was Prince playing with no opening act and playing all of his hit songs, but it was like one 2-hour medley – he had so many hits that he couldn’t play any of them all the way through. I was sitting behind Peter Frampton for that show.

After I moved here from Phoenix last summer, I saw something I never thought I would see, and that is Prince opening Paisley Park up to the public for parties. He has always been notoriously private. I hope that holding those parties brought him some joy. I never thought they would be his final act.

I feel like those of us (and yes, I say “us” because I count myself in this bunch) who do as much as we can as soon as we can somehow have a sense that our time on this earth will end at a much younger age than those who are much more methodical about how they spend their time. The moral of this story is to get your purple on and party like it’s 1999. We will miss this magical man and all of the soundtracks that he has provided for our lives.

https://youtu.be/-ZCiHsIfrOg

Grief and Acceptance

Every other week I am in my counselor’s office, and there seems to be something new that brings me to tears, which drives me crazy. I can’t figure out why I am crying so much. I mean yeah, I have experienced loss on a major scale in the last nine months – my sister, my friend, my uncle, moving states, losing my job, losing all of my doctors, losing my option for more surgeries – but I keep thinking that I should be adjusted by now. But reading this post by my fellow blogger reminds me that I keep experiencing loss and that I still have a sense of instability. Since my U of MN doctors insist that I don’t have Lyme, I have to go through the long process of getting set up through the NIH rare diseases unit and make arrangements through Vanderbilt University to be studied there, as they have locations designated throughout the country for patients to be screened. In the meantime, I have to continue with my treatments with my naturopath, even though I have NO IDEA if it’s the right thing to do.

In addition, I’ve been given the option of getting a TAP block in my abdomen with the hope that it will relieve some of the nerve pain that I’m having from being allergic to the drainage catheter from the shunt. The doc is going to numb nerves on both sides of my abdomen leading to my lower belly. The kicker? I have no idea if it’s going to affect my sexual functionality. And I’ve got a brand new boyfriend. And I really like said new boyfriend and I want to jump him every time I see him. And I don’t think it will be fair to lose what little functionality I do have, because who knows how much longer these good years of responsiveness are going to last? It’s asking a lot of a new boyfriend to possibly give up intimacy for an unknown period of time (forever???); I mean, I call him The Saint Paul, but Jesus H…I don’t know, is there something that is a step above sainthood? If I lose my ability to orgasm, that’s gonna take a LOT of mourning. Maybe some booze and mood stabilizers. I’m already stressed out about possibly taking out the shunt permanently because it’s clogged and I’m allergic to all of the shunts, which means that I may be stuck laying down forever and can’t be up for even an hour.

In closing: Send kittens and puppies and rainbows.

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Wendy's avatarPicnic with Ants

When people think of grief they often think of death, they don’t think about grieving over other significant losses.  Those of us who have had major losses due to chronic illness know all too well that we grieve those losses.

The five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying” are: Denial, Bargaining, Depression, Anger, and Acceptance.  Kübler-Ross describes these stages as being progressive, you needed to resolve one stage before moving on to the next.  This is no longer thought to be true.  It is accepted that most people who have loss go through states of grief but it is not linear nor is it finite.

The 

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You Are Not Alone

It was such a beautiful day – partly cloudy, unseasonably warm. Such a beautiful day that our uncle’s soul could not be contained by the body that was failing, so he took his last breath at 9:00 a.m., sharp. He was never really one to sit still for very long anyway.

My brother called me last night. I had already taken my last dose of meds and had stumbled into my pajamas, when he said, “Chels, you need to get here. He’s here at the hospital and he’s not going to make it through the night.” I clawed out of my pajamas and hurriedly put my clothes back on, and then called my sister. I knew as soon as I heard her voice that she would not be able to get out of bed because she was sick as a dog. She was heartbroken and asked me to say goodbye for her.

Texting with my brother, I advised him that my cab was on its way, and he told me that our uncle was not responding. I started shaking. I tried to remember to put random things into my purse, including my phone charger and my favorite cough drops. I put on extra deodorant (though I knew I was fighting a losing battle on that one – I sweat like crazy when the fluid builds up in my brain like it has been for the last 9 months while I’m upright).

After what seemed like an eternity, but was really only about 20 minutes, the cab arrived. He asked me where I was going. I told him the facility. He asked me how to get there, because he had just moved to the area from Phoenix. Great. The blind leading the blind. Then on the way he had to stop for gas (but he kept the meter running, saying it was at a “reduced rate”). I couldn’t believe it. I was crying and trying to explain to him that I wasn’t sure if I would make it to the hospital on time. Then he started quizzing me on how old my uncle was and if he was sick for long. I’m not new, I know where this line of questioning leads: some stranger-danger jackass is going to tell me that he lived a long life (a week and a half short of reaching 65) and that if he was sick a long time, then I shouldn’t be sad.

But I am sad. You see, my uncle and I missed out on two decades of knowing each other. When he found out I was sick, he began slowly reaching out to me. But before that, we had had no contact. Twenty years ago, his brother – my dad – died, and as people do when they endure a major life event like that, we acted our worst. First, we fought over what Dad should wear to be buried. Whenever he wasn’t working, Dad was in either pajamas or very grubby outdoor clothes, and we kids and our step-mom said we wanted Dad to be buried in his (very nice) favorite pajamas. Our uncle put his foot down and said he should be buried in a 3-piece suit, because otherwise, what would their clients think? (Dad and our uncle along with their close friend owned a successful business.) I told him that the funeral wasn’t for the clients. Eventually we settled on the favorite pajama pants and a nice shirt.

Second, our uncle took me aside and told me, “I know I wasn’t very interested in you when you were growing up. I figured you didn’t really need me because your dad was so involved in your life. Now that he’s gone, if you ever need advice, you can come to me.” I was 22 at the time and already had been living away from home for about 5.5 years, so I felt as if he really missed the boat on being part of my life. Mostly I was hurt that he admitted what he thought about me. I was raw from dealing with the sudden loss of my dad and had no support like everyone else who was there and paired up like they were going on Noah’s Ark – no boyfriend and no spouse. I did what I had perfected long ago, and that was to shut down emotionally. 19 years have passed since we buried Dad and I moved around the country.

Slowly last year my uncle’s messages started to trickle in. He even made a donation to my YouCaring page to help me with expenses during my Magical Medical Mystery Tour. When he found out I was moving back to Minnesota, he asked if we could spend some time together. So the week after all of my belongings arrived and were still taking over my living room/bedroom, we squeezed a chair in between the boxes and the wall so that he could talk to me while I laid flat on the bed. I was mid-sentence in giving him a generic update on what was happening with me when he grabbed my hand and said while fighting back tears, “I’m sorry. I’m so happy to see you.” 

Now that I’m 20 years older and have contemplated life, death and illness, it was all I needed to hear. I repeated his words back to him. He leaned over from the chair to hug me tight and we cried. It’s the crying that you do when you see life with such clarity and you know that your time is limited. It’s the crying that you do when you’re not afraid of death but you are afraid of not being able to make wrongs right before it’s time for you to shed your body. He had stage IV squamous cell carcinoma and didn’t know how long he had until he could no longer function. We managed to have a few more visits before Christmas; after Christmas, he developed pneumonia and was sentenced to bed rest and constant care by his new girlfriend.

Last night a group of people hovered around his hospital room, all red-eyed and occasionally sadly smiling over the sharing of memories. I thanked his girlfriend for taking such good care of him; she went home to rest. Eventually the visitors dwindled down until it was my brother and I, our cousin and his best friend, our uncle’s ex-wife and our uncle’s best friend/long-time business partner. My nighttime meds were kicking in and making me extremely sleepy and I desperately needed to lay down to take the pressure off of my brain, so someone very kindly set up a cot for me in the family waiting room. My brother opted to sleep in the chairs. Everyone else stayed in the room with our uncle. I figured that we would hear sometime in the night that our uncle had passed.

I woke up and stumbled to the community bathroom and tried to make myself presentable. My eye makeup was smeared to raccoon status. My deodorant indeed was a huge disappointment. I stopped pretending to care and instead made my way to our uncle’s room. Surprisingly, only the best friend was there watching over our uncle – my uncle’s son, his best friend and the ex-wife had gone home to change clothes and make sure the dog was taken care of. My brother was still asleep in the family room and so the best friend/business partner went to get coffee while I stayed at my uncle’s bedside.

I used my time with him to sing. Sometimes it was impossible to get the notes out because the knot in my throat strangled me with grief. He wasn’t conscious and was fighting to take in air while he slowly drowned in his lungs. It was painful to watch because our once super-fit uncle had fluid pooling in his abdomen and lungs, prompting him to keep his mouth gaping open while he worked just as hard to push the air out as he did to get the oxygen in. Singing was all I knew to do because I felt helpless – I was coming into this process late and didn’t know what his wishes were as far as pain control went.

When my brother and my uncle’s friend entered the room, they both were concerned about the amount of work it was taking for my uncle to try to get air into his lungs. He seemed to be clenching his fists a bit and his shoulders were also working themselves forward and back in an effort to try to take in oxygen. The three of us decided that we wanted him to be comfortable, so I found the nurse and asked her if we could get assistance with pain medication. We talked about the effect that upping his meds would have on him, which was mainly depressed breathing. I was concerned that our uncle’s son wouldn’t make it back to the hospital in time. My sister and her husband were also trying to get there to say goodbye. But we went ahead and had the orders changed so our uncle could receive his meds more frequently to aid him in dying in comfort. We didn’t know when that would happen, because he survived another night when he should have been gone, really.

The nurse gave him painkillers in his IV and some drops under his tongue; he seemed to settle down and labored less to take in air. I stepped out of the room for about three minutes to make a phone call. When I returned, his color had changed completely. Our uncle was taking in small, shallow breaths, and his skin had taken on an unnatural tone of yellow with underlying grey. My brother held one hand while I held the other, and our uncle’s friend stayed at his feet. We all told him we loved him, we all wanted him to feel no pain, and it was okay.

I watched the pulse at his neck as it slowly ebbed like a far-off ripple on a lake. Finally, I put my fingers to his carotid and confirmed there was no pulse. The friend went to the nurse’s station to call the nurse and resident into the room. Our uncle had left, to join his mom and dad, his brother and sister, and probably my sister, as well as countless other souls who were no longer caged by their bodies. No more pain, only flying free.

My dad (L) and my uncle (R), playing around with their mom’s pantyhose. 

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Now You See Me

About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.

“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?

I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.

If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.

Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis

Speak Easy

Last week Friday, February 5th, Nikki (http://ilivebreathe.com/) and I had our first chat on Blab. The agenda was to talk about toxic people, the diverse challenges we face when interacting with them, and when to let them go. The recording went much longer than we planned at 1 hour 45 minutes, but if you are interested, here is a link to the show:

https://blab.im/82740adeac204a028576bc288ef25703

We decided to come back this week with another show, and this time the topic is self-care. What do you do to bring yourself back from the pit of despair? Do you allow yourself to laugh or cry? If you have seen the movie “Amelie” (French with subtitles), you know that each character is assigned a list of things that seems like a very simple pleasure. Amelie’s father likes to take all of his tools out of the toolbox, clean out the box, and very carefully put the tools back in. A patron at the eatery carries a mini tape recorder with him everywhere, and then records unusual laughs. Amelie likes to stick her hands into barrels of dried peas.

What do you do to make yourself feel better about your circumstances?

Join us on Blab for a discussion on self-care; we’ll start at 6 pm EST/3 pm PST Friday, February 12th.

https://blab.im/nikkiseefeldt-sickadilly-chat-2-self-care-strategies-rare-dis-disability-chronic-illness

Life Lessons Learned From Being Homeless – by Kenny Murray

These are all wonderful points; some of them will save you from homelessness if you ever find yourself close to it. (The only one I don’t practice is believing that it can always be worse. As I like to say, it’s not a competition for the shit cookie.) Be well and be loved.

Kindness Blog's avatarKindness Blog

I’ve been homeless four times in my 25 years on this planet.

When I was 7 my father kicked my mother, me and my four siblings out of the house.

When I was 9 my father had found where we lived and my mum fled with us for our well-being.

When I was 11, he found us again. We ran.

The last time I was homeless was when I’d refused to get involved in my local gang in Easterhouse (one of Scotland’s poorest housing estates), so drew attention from one of the local hooligans. I was beaten up so badly that we left the area for our own safety.

I’m not writing this so people feel sorry for me, rather I’m writing it to illustrate that yes, whilst I was homeless four times I’ve not let it dictate my life in a negative manner — rather I use it as a means…

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Me and Alan

This is just a tough week. My health stuff has been forcing me to push everything else aside – because as some of you know, you only have enough energy for one thing each day, and that is if you are lucky.

I had to go into the surgeon’s office today like I have done every single day since last Tuesday to get my wound checked and repacked. I’m actually a “super healer” and for that reason also very rare. My body immediately goes to town on closing up wounds and building scar tissue – collagen – so it’s yelling last call and shutting the doors before all of the riff raff has exited. The downfall to that is that my body trapped bacteria in its rush to seal everything, which is why the doc had to make hamburger out of my ass. This is also the reason why, when my body figures out that it can’t physically break every shunt, it resorts to clogging and strangling the drainage catheter. I don’t make keloids. However, I have a huge wad of scar tissue on the right side of my brain left over from the cisternoperitoneal shunts I had implanted there. If I press on that side of the skull, I move the whole mass and it’s very uncomfortable, as if I am moving strings that are attached on the inside of my scalp that reach down into my brain.

While I was getting ready to go to show my ass yet again, I was catching up on the news, and so saw the announcement that Alan Rickman died from cancer at 69. Like Bowie, he was another Brit with loads of talent, adopted and adored by us fickle Americans across the pond. This seemed like another abrupt loss that we didn’t see coming – I mean, some people shouldn’t ever die, right?

Like a lot of people in the U.S., my big intro to this man was the role of Hans Gruber in “Die Hard.” He was such a good badass. I didn’t want him to be killed off. I wanted him to return for every installment of that franchise.

About seven years later while I was living in Albuquerque, my roommate introduced me to “Truly, Madly, Deeply” via a VHS tape she had in her vast movie collection. It was a role that allowed me to see past his villainous past and embrace his gentler side, and roll around in his deep voice like a dog rejoicing in sunshine and grass. If God actually existed and had pipes, I do believe that we would hear Alan Rickman speaking.

In 2003, I moved to Arizona without knowing a single person, without having a place to live and without having a job. (Things were really different back then, kids!) A few weeks after I landed, “Love Actually” was released to the theaters for the Christmas holiday. I didn’t have anyone to go with, so for the first time in my life I went to a movie by myself. I’m glad I did – I liked the movie enough to buy, which rarely happens. But Alan was part of the ensemble cast. He played well the role of a man who was befuddled by the temptation placed in front of him and who ultimately could not rise above.

I know this makes me an oddball (judging by just how popular the Harry Potter series has been), but I could never get into the Harry Potter movies. So many people are mourning the loss of Professor Snape; I will instead choose to remember Hans, Jamie and Harry.

Me and Ziggy

 

Today may have been the first time that I have listened to “Ziggy Stardust” in its entirety since 1993.

David Bowie and I have a pretty solid history. When I was little, I loved the song “Space Oddity.” I don’t know if it’s because I’ve always felt a little out of place in my world, as if I’m living on a different plane than the general public, or quite possibly that I’m an alien trapped in a human body. Whatever the reason, I would sing that song over and over; I have always used singing as a sort of comfort to myself, like the proverbial blankie or stuffed animal.

When I was in elementary school, MTV was born. Our dad was pirating his cable from a neighbor’s wire and we had access to this fabulous station with music and stories 24/7. I loved the really creative videos that gave me interesting visuals to go along with the musicianship. It was the first time I actually saw David Bowie in motion thanks to his new wave pop tunes “China Girl” and “Let’s Dance.” In fact, the “Let’s Dance” album is the first one our father purchased to play on his brand new contraption, the CD player. If we jumped hard enough we could make the CD skip like a record. Our father’s side of the family was blessed with innate rhythm, so we would often have dance parties in our living room, sometimes including our aunt’s five children.

In high school, I joined one of those CD clubs – you know, buy one full price and get 11 more for 1 cent? I got a best of from Bowie that included all of my favorite songs up to that point. It got heavy play. I was listening to it during my first week on Mackinac Island for my second season after I had just turned 19, when I lived above the busiest bar on the island and we had a lot of people coming and going. That is when a guy knocked on my door, started making out with me and coaxed me out of my knickers and my virginity. “Ziggy Stardust” was the song playing when it all went down – I distinctly remember the guy drunkenly saying that he loved that song. I loved that song. Unfortunately, because I had resolved to just getting my virginity out of the way and not trying to make it a movie-type romance, it was not a good experience. He was very rough. He bruised me deeply, my lips were purple and cut. I had bruises all over my ribs, ass and thighs. He was drunk and he doubted it was my first time. My first sexual partner did not care for me or about me, and I paid the price. Well, me and Ziggy. I stopped playing that song.

When I was 22, I had been living in New Mexico when I flew back to be in a friend’s wedding. It was the last time my father and I saw each other. He had cut my hair (the “Rachael”) and we were chatting about his Bowie box set that he received from a client the week before. We also talked about this new cabin Dad had purchased two months prior, and how Dad intended to fix it up and retire there, but that he didn’t think he would see retirement. I told him frankly that I didn’t think he would live to retirement either. He asked me why I said that, and I told him that I couldn’t envision him as an old man, that everything went black when I tried, like a newly washed chalkboard. Three weeks later I had to fly back to Minnesota because Dad died of a heart attack – at the cabin he wanted to retire in. He had gone up there for a weekend by himself to work on a few things and maybe do a little duck hunting. From what we could tell, he entered the cabin, set down his pack, laid down on the bed and died. He was discovered by the local sheriff when my step-mom called for a wellness check after Dad didn’t return home at his scheduled time. The Bowie box set is one of the first things my step-mom thought to give me when she was dividing up mementos between us four kids. She knew Dad and I loved our David Bowie.

I believe in a continuation of the soul when we die. Relating to that, I have a question that I suppose will never be answered, but I’ll ask it anyway. When famous people die, and are so universally mourned, does their soul visit every single person every time they are thought of? Souls must be infinite, but is their energy ever depleted by the millions of times they are tugged and pulled by our sadness? Or do they only have a connection to the people they loved in their lives?

I’ll leave you with my favorite Bowie song, which is his collaboration with Queen. I get goosebumps every time I hear it.

https://www.youtube.com/watch?v=YoDh_gHDvkk