At the Edge of the End

On April 1st earlier this year, my body began to change. Lethargy had set in. I had no desire to eat. My lymphatic system was acting strange, as though it didn’t know me. I didn’t feel exuberant about anything. As a matter of fact, I felt deflated, uninspired.

We couldn’t find anything wrong. My lungs, my heart, all fine.
Then after many months of endless scans and tests and a recent 9 day stay in the intensive care unit, (I began throwing up blood) I was given my diagnosis on September 3nd. I have terminal end stage liver failure. I have about 6 months to a year and a half of survival. With the condition of my other organs, it’s quite possible I can get a little more time.

I have been in bed a lot. I’m far too weak to walk on my own, so I use a cane or a walker to get to the bathroom. My abdomen is distended, my eyes have jaundiced, and I’m on so many pills that it feels like I’m back in the hospital. I haven’t had much time to process everything for myself, but asked the hospital chaplain if he would pray for my friends. I am going to need them to be strong for me….and some are handling this better than others.

I am coming to terms with the mistakes I’ve made in the past, but here in the present it seems the most dangerous thing I can do is pretend that nothing is happening, shielding others from the human inevitability: mortality coming quickly, coming suddenly, without much warning.

I promise to write as much as I can for as long as I can, but the pages of this blog will soon wind down to an end. I want to spend the last of my time experiencing the transition into non-physical….once again.

So, in the middle of this mighty silent Sunday, I wanted to reach out and let you know what was happening, what I wish would happen, and what I hope to find when the horizon is met with the loving glow of God.
I love you all and hope to hear from you.

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Perfectly Eccentric

Yes, it’s true. My health has not been very well lately. Sucks, doesn’t it?

It is hard to get out of bed somedays. Hard to find the energy to eat. My body shakes when I move. I will go for a walk, trying to get my legs working like they used to. I look like a young gazelle working its long, gangly legs for the first time. (Fun fact: Phillip may be taller than me by three inches, but the inseam on my trousers is longer than his. HA!)

ImageBecause I haven’t felt well, no energy to even dress myself sometimes, I’ve been walking around the house with something of a sarong (yes, the design is mine!) and my knit socks (courtesy of Kroy!) I look perfectly eccentric 🙂 (By the way, if you remember me for anything, anything at all, please let it be that I was perfectly eccentric!)

I will not hesitate to say that I’ve never been more terrified. There was a mass, a growth on the side of my neck that alarmed every physician I saw. Then it went away. And I went back to what I thought was normal. But, that side of my jaw, from my ear to my neck, feels numb, somewhat cold. Don’t worry, I’ll be calling my doctor to tell her about it. To be fair, it’s more than that. It’s the lethargy, the lack of appetite that concerns me more. I was so sure getting my medical marijuana card would cause that desire for a bag of Doritos, chili dogs, or ice cream and cheesecake, Sour Patch Kids, munchies!

No…..Kind of the opposite. Everyone is doing a 4th of July pig fest, stuffing hot dogs down their throats and I feel like barfing just thinking about it. (I haven’t eaten enough today. I really need to push myself to eat more).

Waiting for Phillip. Nearly 2am. I hate it when he works this schedule. He’ll sleep a good ten hours when he gets home. I sometimes feel alone.

(Oh. He’s just come home, so I’ll have to go.)

I guess that’s all I’ll say for tonight. I just thought I’d share what was happening in my head….Was nice to get it off my chest.

If you appreciate my blog and would like for it to continue, please donate. Every bit helps and I wouldn’t have the courage to do this without you. Thank you so much for reading!

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Loaded For Bear

If you’ve followed me for long, you know my teddy bear has always been a source of empowerment.

Ten years ago I started knitting these little darlings because I was homeless. I sold enough to finally have an apartment. I beat that situation with a little knit teddy bear. About five years later I continued to knit and sell teddy bears so I could build a brand with a logo, with a story…..and about five years after that I had grown so tired of knitting the same thing over and over that I just stopped completely. The monotony was boring me, killing me. Humdrum can be deadly.

ImageA few days ago I was peeking through an old box of yarn, yearning for that delicious alpaca mix that my bears were made of. I found it, touched it, pressed it to my face….a sigh. I showered, I shaved, finally ate some food. This cancer scare has me stressed and when I’m stressed I do not eat. And to be fair, when I get a little too cerebral, I don’t think about self care. I’m too in my head to look at a mirror.

I got to work right away. Invigorated. Optimistic. That first teddy bear I knit and finished was like meeting an old friend. That old friend had the same face from before. Patience. Understanding. Care.

“I’m here whenever you need me,” his face said. “No conditions…..”

“Thank you!”

I have to have more tests done to see if I have cancer. My next one is tomorrow. A CT scan of my chest. I hate when making the appointment that they remind you the test is for lung cancer. (QUIT SAYING THAT!!!!)

I have to pay out of pocket now that my insurance company dropped me. So, my teddy bear has come back into my life to save me again. If I can sell these bears, I’ll have the funds to pay for not only the CT scans tomorrow, but the blood tests I have to do later this week.

No matter what the tests say, no matter what the conclusion is, I’ll be walking into an oncologist’s office, clutching a little teddy bear saying, “I’m ready. What’s the diagnosis?”

My little teddy bears are in my shop.

A Letter To My Doctor

The last two months have been more stressful than any other time in my life, and I’ve had some shady moments in my past, I promise you.

The fear of not knowing, that gray place called ‘maybe’ has worked its way into my brain to the point of self medicating. Yes, I am an alcoholic (I’m inebriated now), but recently, the fear of not knowing has me soaking deeply into bottles of whiskey unlike anything you may have seen before. I don’t have a large social circle. And the few I do call upon when frightened are beginning to feel exhausted themselves.

I tried to get the CT scans (three times), but every time I was there, they said there was a clerical error and couldn’t be done that day. Fine. I don’t mind. But, I don’t have transportation, I’m agoraphobic and no one had the decency to call and tell me I shouldn’t even bother coming. My final visit they were able to do the chest X rays. “If you can do the X rays, then why can’t you slap me on the slab and do the CT???”

I asked them to add to my notes how pissed I was.

The blood test were scheduled, but my insurance company dropped me (again through a clerical error), and when trying to do the good faith estimate, I was given a PDF sheet of all costs. Not knowing what my order was for, I simply couldn’t pay for the test.

Dr. Pinero recommended I get my medical marijuana card since I don’t care for pharmaceuticals. That’s when they found out I was dead on paper. My social security number no longer exists. I haven’t filed taxes in the last couple of years because I haven’t made any money. They gave me my card, but I can’t go to a dispensary.

It’s ok. I have a friend who has been supplying me with marijuana. He’s not a friend, really, but more family. A good man, whom I have made my living will. But, now I have to find a way to let the IRS and SSA know that I’m very much still here.

The best part of my days are when I’m knitting my own socks while watching Murder, She Wrote. Then dancing to Siouxsie and the Banshees with my headphones on. And a little Nizter Ebb, a touch of Front 242, a hint of Depeche.

The depression evaluation had me asking questions of myself. Is there something in my head that has me clinging to vices, the very vices that are causing health problems? Is that all there is to this? Is this where I am? Is that really what this whole health scare is about? Just something locked in my head that has me in self destruct mode?

ImageI have a definite status in the knitting community, but gave it all up to tend to my husband, to make sure that he had every possible avenue for success, that he wouldn’t have to worry about anything other than making money. He’s never had that sort of graciousness before. He has never had anyone believe in him. So, I tried to keep the house cleaned, the bills paid. And it became too much to realize that my days were filled with doing laundry and dishes and in the process doing nothing for myself.

Do I resent the decision? Of course not. I helped a man elevate himself to a place he never thought he’d be. I helped make another man better. I showed him how brilliant he was.

But, in the process, I pinned myself down. And since then, I’ve not done much for myself. No self care, no grooming, nor even bathing on occasion. I drink all day, stay dirty, and welcome him when he comes home with my heart bursting at the seams knowing I’ve done something good for someone else, but have screwed myself at the same time.

So, how do we fix this?

Happy Birthday, Sioux….

Dearest Siouxsie! Sorry I forgot your birthday. It’s difficult to remember when it comes around, for I celebrate you often, nearly daily, listening to your music, admiring your contribution to culture. My husband will role his eyes when I play your work. (Been playing “Pinned Down” at high volume a lot lately). Those close to me know my fondness for you and your work. From Banshees to Creatures to solo, I have enjoyed the ride.

I remember meeting a colleague of yours (won’t say which). He said, “She’s really demanding of the work.”

I replied, “I can see her being difficult.” He was quick to respond, “I didn’t say difficult. I said demanding of the work….”

I was put in my place. He continued with, “She’s actually a very smart, wise and kind person. She just demands that she and the Banshees did the work. They could have been a joke, a one hit wonder, but she made sure they were part of that legendary catalogue of musicians.”

I’ll never forget that.

ImageYou are legend. Still inspiring generation after generation with music and fashion. Never was, never will be another like you. Good grief, from one scribbler to another, you’re one of the best writers ever! And I don’t think you get enough credit for that. “Red Over White,” for God’s sake. AMAZING! “Red Wrapping Paper!” Oh, come on! I could go on, but we both know you are the queen of smart lyrics.

So, my apologies for being late. My sister had to remind me. That was thoughtful of her. But, in my defense, I spend day after day celebrating how you have inspired me (so much) that I didn’t realize that it was your birthday. I seem to celebrate your life almost every day, on a whim, wanting to sing along with you.

I wish you all the best and will celebrate your (belated) special day watching “Dreamshow.”

Much love,

Gregory Patrick

That Forgotten Folded Flag

And there it was. Somewhat metaphoric. Someone’s life….Someone’s service to our country.

Phillip passes a donation bin on his way to work everyday. It’s solidly in the middle of the parking lot in the plaza. And sometimes things don’t make it into the bin, they just end up around it. That’s when Phillip will come home with some of the most interesting things….the things that are shattered, scattered about, things that didn’t make it into the bin….maybe because someone just didn’t care. They just wanted to be rid of whatever it was.

ImageHe found this folded flag in a ziplock bag, just haphazardly tossed towards the donation box, but whomever decided to dispose of it didn’t seem to care enough. It ended up on asphalt, on a paved road, seemingly an after thought.

Phillip was quick to rescue it, with all the beautiful angles of kind thought. Who was this given to? What happened to them that would cause someone to say that this folded flag should be tossed away? Who were they? Why were they given it? What contribution did they make that they would be honored with a folded flag? And more importantly, who decided that this flag should be preserved in a plastic bag, preserved for all time possible? And who decided that this flag should be thrown away with the carelessness of just throwing it at the donation bin, rather than in it?

Someone’s story is here, and we’re proud to keep it, find a frame for it, proudly display it on a wall. And we will never unfold it, for that folded flag is a reminder of valor.

Someone’s story is here, in our home, not forgotten, but kept alive every time we see it. We don’t know what that story is, but that forgotten, tossed flag reminds Phillip and I of so many (so many!) of those that served, gave their lives, and are often forgotten on this Memorial Day.

I Am With Him

Here we are, deep in the evening, cresting past midnight. My eyes open skyward. The moon casts a beautiful and serene light on everything I hadn’t seen during the daytime. Different shadows, different sounds. The calm. The quiet.

Birds don’t chirp, nobody demands that a leaf blower make everything perfect and pretty, and no one bustles towards their side hustle. I guess that’s why the monk in me giggles: the thrill of silence. (Hence, why monks tend to flourish with prayer in the middle of the night. Hard to pray in silence when you’ve got a lawn mower outside your window…or across the street….or next door).

Daylight can be a frightful thing sometimes because it becomes routine. I’ll clarify. NOISE becomes routine. Probably why some people always need to have a television on. They cannot tolerate silence.

People tend to think that there isn’t a lot of time, nor space, nor even interest in finding a moment where you can hush yourself, hush your issues, hush your problems and just breathe….And because of that, I think a lot of us find ourselves overburdened with the noise of life, and never taking a moment to enjoy (for just a moment!) a quiet night….nor even a quiet five minutes. It’s scary for some. You’d be forced to listen to yourself, or (heaven forbid!) God.

ImageI tend to spend a lot of my time this late in the evening just listening to something akin to nothing. Crickets and cicadas rule right now. Their monotonous, droning hums aren’t that different than my monastic brothers waking soon to do practically the same. Not noise, not singing, but just a hum that begs itself to pray quietly in the middle of the night, to connect with God through that quiet hush, just as those leaf hoppers do in the brush. The real world harkens. That leaf over there dropping dew at midnight brings me closer to God. The croaking of frogs carry me into a smile.

And as I reach for that quiet fervor….I am with Him.

As Tough as Painted Nails

Well….my mother and sister and I recently got together for a Mother’s Day Extravaganza. We had not been in the same room at the same time for at least 10 years. With this being my mother’s 70th birthday year, we decided to do this massive, girly fest slumber party. Originally, we were to have it at my house. But, the last year has been rough for all of us. I have a cancer scare, my sister has a career scare, and my mother has an aging scare. I thought we’d crawl into our pajamas, order a couple of pizzas and watch a few movies while gossiping….

Oh, no. That’s not what happened at all. My mother decided that if we were going to do this, we were going to do it right. So, she booked us a suite at a swanky hotel downtown where we could spend the evening having nibbles, facials….getting our nails done.

I’m not that sort of groomer. I don’t lather myself with lotion. I don’t do mud masks, I don’t exfoliate, I don’t concern myself with cuticles. But, I was having the best damned time hanging out with my mom and sis that I couldn’t resist! First, the facial.

I have to say I tried everything I could not to LAUGH, but was told not to. They put this slimy piece of cloth on my face. I have no idea what I looked like, but I could see my mother and my sister and they both looked like Leather Face. I kept giggling at the absurdity of it all. After 30 minutes I was allowed to pull that gooey material off my head and asked, “Can I wash my face now?”

There was an immediate plea, both of them leaping out of their chairs. “NO!!!! NO! You have to rub the serum into your skin, down your neck around your ears and let it absorb! You have to let the serum ABSORB INTO YOUR SKIN!!!”

I stood back, frightened a little.

“Okay….calm down. Everyone chill. I know ya’ll take this seriously,” as you would say to a member of a cult.

I complied and rubbed that gooey mess all over my flesh. (Fun fact. No one ever gave me the “all clear” that it was safe to wash my face. It was two days, my friends, before I finally said, “Screw this,” and finally splashed my face with water. I have to confess, my skin was surprisingly taught, though.)

Next up was getting our nails done. They were getting their toenails done. Apparently, it’s open toe season. You know, sandals, flip-flops, the like. My getting my toenails done seemed ridiculous. No one would see my painted digits because I always wear boots, or at least socks. I could walk around this house butt nekked in the summertime, but I still have a pair of socks on….and yes, sometimes my boots, too.

I was so pleased with the way everything was flowing. We were laughing, chatting, sharing, and all done as though it had NOT been ten years since we all three were together. The ambient mood suggested that we did this every weekend. Anyone strolling by would have thought that we normally did this on the weekend. We were so casual about it.

ImageHaving my toenails painted would have been absurd. So, I had my fingernails done. Bravely, proudly, for all the world to see. I had the normal questions that most newbies have. “How long will this last?”

“Maybe three weeks or so.”

“SAY WHAT???? THREE WEEKS????” I just assumed it would be gone in a couple of days!

My mom chimes in. “Son, if it bothers you we can always get some nail polish remover and be done with it. But, thank you for at least trying.”

I grimaced, I winced. Man, I have to walk around with this on for three weeks????

I stared at my nails and began to think about the whole trip, the whole weekend. This was the best time I’d had with two of the most important people in my life. No fear of cancer, no fear of career, no fear of aging. The three of us laughing and having fun.

So, it’s been about three weeks and my nail polish has been chipping. My nails are looking….yuck. Kara was over the other day and suggested we go up to Walgreens and get some remover and take it all off.

I looked at my nails, chipped and wrecked of a deep Navy blue and asked, “Once you take this off, should I stick with this color, or find a new one?”

She looked at me with a smiling curiosity.

Throughout the last few weeks, every time I looked at my nails I was reminded of a great weekend with my mom and my sister. We rarely get to see each other, but every time I looked at my nails I smiled with glee at the three of us looking silly while trying to look pretty….(excuse me! Prettier 🙂 )

“Yeah, I think I want to keep painting them. I dunno. It’s weird and beautiful at the same time. Every time I knit I see those painted nails. Every time I draw something, I see those painted nails. So, I guess it’s an interesting version of keeping a good memory around me all the time.” Yes, I am eccentric.

Much to my enjoyment, Kara suggests we make a night of it. “Oh! Next time Phillip is working until 4am, we’ll hang out, order pizza, do our nails, flip through Vogue, watch cooking shows and gossip about people we don’t like…..” (Huge smile on her face!)

“YES! Let’s!”

So, I guess my painted fingernails are an homage to the amazing women in my life. They take care of me, love me for being only me, and are always a phone call or a swag bag weekend in pajamas away.

Clergy

ImagePhillip says to me, “Let’s start a rock band.”

“Beg your pardon.”

“Your voice, my instruments. I think we could do it. You could be my Nico.”

Then he says, “I’m pulling out my Gugin….”

I hope you are as wide eyed as I was when hearing that. “Pulling out your what?”

A Gugin is a beautiful stringed instrument from China. Phillip has some of the most fascinating instruments. Truth be told. He has a tons of them. Multiple music makers. He has a weird whistle that sounds tribal. A drum that looks sensual. He has all sorts of fun things. No guitars, no banjos….But, he does have a Gugin.

He sits me down in his new studio. Yes! We have an extra room, what we used to call the Florida room, but Phillip has decided to turn it into a musicians studio. (How fantastic. I mean, think about it. It could have been a dumb “man cave” where he played video games all day. No! He wants to create things, not kill things!)

The man wanted to make music, play, have fun, enjoy the creative process….and was kind enough to make me a part of his art 🙂 I got to be a muse!

So, we just played for a moment. My speaking for a moment while he played with his Gugin. Ha! Trying not to make it sound dirty. No, no innuendo here 😉

We decided not to edit the piece, but leave it as is. You can hear us trying to figure out software, layered tracks, and a little bit of both of us being a bitch for a minute. It was fun. And I think it’s barely a minute long. We call our little endeavor, “Clergy.” Click here to listen.