little by little

I was looking through #quotestoliveby on Instagram tonight and came across three small words.

“little by little”

I’m sure that this is probably a mantra for many, as it could encompass so many aspects of life. It might have been written to encourage people to strive for their goals, to not give up. Maybe to save their pennies, and go for that dream vacation. Or keep chipping away at their education, until they’ve succeeded in their dreams.

I used to love seeing quotes like this. I’d save them to my quotes board on Pinterest. I even contemplated getting some of them as tattoos, so powerful a message they were, I wanted them as a permanent reminder.

But tonight I see these words and they don’t speak to me as they once might have. I see “little by little” as a reminder of my mortality. I see it as my disease chipping away slowly at my body from the inside out.

Little by little my bones grow brittle and break more often.

Little by little my fatigue consumes me to where I wonder if I can get out of bed again.

Little by little my hair falls to the floor.

Little by little the drugs fail and I wonder what will be next if I’ve already tried everything.

A lot of people have commented on how strong I am about my disease, how in control I seem, how optimistic. They don’t realise that this is the mask I must wear, my uniform. Because if I share how scary it is to not know when the end is, then I’m being “dramatic” or “looking for attention”. No one wants to hear when the chronically ill are suffering. It’s a nuisance, something that should be kept to themselves. So we do. We keep it in. We become experts at the “I’m ok”.

But there are days like today, moments where the gravity of everything collapses our resolve. It might be a song on the radio, or a comment someone made at dinner, or that moment when we look in the mirror while washing our hands. Everything we hide from everyone, including ourselves, shatters. We remember what we are going through and how bad it is.

So tonight, when I read those three words, I remembered that little by little my body is dying. And that just sucks.

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Oh, is my hair loss from chemotherapy inconveniencing you?

For those of us who take forms of chemotherapy for our disease, it’s a pretty big deal.

It’s bad enough that we get flak from the cancer community for using the term “chemotherapy” when explaining our biologics, when that’s what it actually is! I get that some of us aren’t on the high doses that cancer patients are on, BUT IT IS STILL CHEMO AND IT STILL HITS US HARD. It’s not a competition to see who’s on the worst drug or dosage.

I’ve been on biologic infusions for a couple years now. That means that I willingly consent to toxic chemicals being pumped into my body in the hopes that it makes me well. Sometimes, they do. I have unfortunately been on the other end of that a few times. The last time my body didn’t like chemo, the backlash consisted of multiple heart attacks and an eight day stint in the ICU.

It’s not a competition, so don’t tell me the chemo I take doesn’t have a toll. I get nauseated and vomit for hours. My body turns to lead and I have to sleep like the dead for up to 20 hours sometimes, just to recoup. AND my hair falls out.

Its gotten better over the years. The first time I went on chemo it came out in large clumps, to the point where I had to cut my hair short to hide the gaps. These days it doesn’t fall out en masse. But it does fall out! I have strands all over my floor, all over my pillows, and all over my bed and sheets. It sticks to my clothes, and it stands out cause I’m a redhead these days. You really can’t miss it.

It makes me very self conscious. You don’t need to tell me my hair is everywhere, I KNOW. No one knows better than me!

Most people are pretty cool about it. Sometimes they pick it off me discreetly, or mention I have a chunk sitting on my shoulder. I blush, take care of it, and we act like it didn’t happen.

You know what’s not ok?? Acting like you’re put out because my hair is in your vicinity. I’d love to not have my hair fall out, but I didn’t choose to be chronically ill, and I certainly don’t love being on chemotherapy. Have some fucking sympathy or compassion. But saying “Ew your hair is everywhere” or refusing to touch things in MY room because the hair “grosses” you out… Like are you serious?

How entitled do you have to be that you shame me for something I can’t control and hate about myself?!?! That shit is not ok. And while in my naivety I may have put up with it in the past, I will not longer.

No one in any circumstance is allowed to make you feel bad about yourself or your circumstance. EVER. That shows their insecurities, not yours.

So that will no longer fly with me. Nor should it for anyone else.

Mulling Over A Dream

It was quiet when my eyes were closed. It was when I could be at peace despite my world falling to pieces. I could be in the middle of a crowded room, or in busy store, or even now, as I lay on this cold bed in the middle of the local emergency room… With my eyes closed, I could shut the ugliness of the world out, maybe even pretend I was well again.

Not even a week had passed of 2018, and here I was with an IV in my arm, my mom sleeping next to me in a cold hospital chair. As per usual, no one had any idea what was wrong with me. A fate I had grown accustomed to. Leaving five hours later with a prescription for painkillers I’d never fill, and a suggestion to “get some rest”.

My problem is I can never get enough rest. Not if I want to attempt to have a life by any standards. I can’t sleep my life away afterall.

So in that hospital bed I lay with my eyes closed, waiting for no news. And in that quietness I fell asleep, mulling over a dream. A dream I’ve had many times. One that I know now will unlikely come true. Not so much a dream, but more of a memory…

The last memory of my other life.

The life I had before this was all I knew.

A life that wasn’t filled with medications, cold hospital rooms, and the constant threat of more pain, more fatigue, and a new diagnosis every six months.

Furthermore, a life where I would find someone who loved me for me. Where they wouldn’t look at me and see broken. Where they would marry me no matter how many years we may have together. A life with choices, and maybe children.

It was a good dream. But eventually I woke up and opened my eyes… Back to the cold hospital bed, to the doctor telling me she could do no more. Back to my reality.

I slept for a long while that day, once I had climbed back into my own bed, and my mom departed for the long trip home. I was used to this aftermath of hospital visits. Used to the bed rest, dehydration, and exhaustion that inevitably followed. Used to the loneliness, the unbearable loneliness that came with my disease.

But this time something new followed, I was not so alone. He came with food, and hugs, and the support I needed to get through it without falling apart. And in the days that followed, I realised his love allowed me to mull over a new dream.

We’ve still got time

For the last two years I’ve lived on a clock.

A clock that has been ticking away the moments to where I meet my end. My illness eating away parts of me that are unseen.

Because of this I’ve adjusted to a “come what may” attitude towards life. I’ve been living free and fearless, feeling that this was the only way for me to live my life to the fullest.

But I have recently come to realize that this may not work for my anymore. I can no longer live in the shadow of my disease.

I have people I care about and friends whom are important to me. The ‘come what may’ philosophy only worked for me when I had nothing to live for and therefore had no fear of what happened to me.

This is no longer an accurate representation of my life.

Maybe it’s that 2018 is in quick approach and it makes us all think about what is important in our lives.

Love. Family. Friendship. Truth. Fun. Happiness.

No I don’t suddenly fear death or the end of my being, despite that always lurking.

No, I don’t fear the clock of life.

I fear the loss of the important things.

People go through their entire lives not being truthful to themselves and others. Life is short, no matter what time clock we are all on. Cherish the time that is given. Share your feelings. Tell your friends they are important to you. Tell your loves what they mean to you.

Instead of being fearless, respect the time you’re given and use it wisely. It’s not to late to be truthful to who you are.

I’ll see your seeing-eye dog, and raise you two fuzzy kitty bombs

Today I read a post on RheumatoidArthritis.net about the love and comfort that pets can give us when we are ill. And I agree, that couldn’t be more true. Sometimes, I wonder what my life would be like without the comfort and love that my two feline fur balls give me day to day.

When I first adopted Astrid and Aureus, they were only four months old, and had personalities wildly different from how they are now. I had just made the (super unfortunate) decision to move in with my partner at the time, and we had made the (very compulsive) decision to adopt cats after seeing a sign for Humane Society Adoptions at our local Petco. Looking back on that day now, I’m surprised I couldn’t see that as the beginning of our end… But that’s another story for a day that involves tequila and the reminiscing of bad decisions.

Anyway, we were at Petco, and they were allowing people to play and pet the cats in a small room at the back of the store. My partner took an immediate liking to a very friendly little ginger cat. He sat holding the tabby in his lap, unable and unwilling to move for over an hour. It was love at first sight. We decided then and there that the ginger was coming home with us, but I hadn’t found a second cat that pulled on my heart strings. I didn’t want the first cat to be lonely, and I  didn’t want to bring home a second cat later on. If we were going to get cats, we were getting two at the same time, so as not to have to deal with introducing two cats from different shelters later. Cats could get very territorial, and introducing a new cat to a house that already has one is a long stressful nightmare.

So I spent time holding each of the other eight cats in the room, trying to decide which one would be a good fit for me. Most of them were 3-6 months old kittens, and had just been “fixed” the day before. And there was one older black cat, whom was adorable, but we were there for kittens. Finally I spied a very shy black and white cat, hiding behind one of the cat trees. She was very skittish, and the Adoption Agent told me she was a rescued feral kitten who’d been living under a dumpster. While my partners cat was an “abandonment”, given back to the Humane Society once he’d grown out of the small kitten phase. Tears filled my eyes and the choice was made. These two were destined to come home with us.

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A year later, when I moved out of that apartment (and relationship), both cats came with me. Aureus, the ginger male, and Astrid, the black and white “Poky little kitty”. They’ve been with me ever since. Aureus, who originally was a super cuddly love bug, has grown into a large and lazy ginger tom. And Astrid, my shy and skittish little girl, is now Mistress of the House, always looking for a cuddle and some treats.

I love my two fur balls, and not only because I’ve always been a cat person, and have kept cats since I was a small child. But because they are really the most empathetic and loving creatures to have around. My cats always  know when I’m not feeling well. In fact, on quite a few occasions, they’ve woken me in the night when they’ve sensed something was wrong. It’s usually just before I’m about to have a pain flare, or be hit with a severe migraine. Because of their kitty alerts, I’ve been able to take an extra dose of steroids, or pain killers. Or I’ll get up to use the bathroom and grab a full glass of water in case it’s hours before I’ll be able to get up again.

They aren’t just supportive in the practical sense. Loving my cats, watching them grow, and sharing their warm kitty purrs, well it just puts me in a good mood. When I’m down because the pain is depressing, or I’m feeling alone because of the nature of my disease, I know I can always come home to these two. No matter what, I always have my loving fur bombs to cuddle and love. They lift my spirits, sometimes when nothing else can.

I know a lot of people put stock in how great dogs are. Seeing-eye dogs are great for the blind. They have those dogs that are trained to sense when their owners blood sugar is low, for those with diabetes. And that’s great for those people. But what I think would really do the world good, is more cats for comfort. There’s nothing better than holding a purring cat. Or feeling sleep for an afternoon nap and waking up to see that your two cats have joined you for shared fuzzy snooze time. There’s something fantastically comforting about your cat pushing their butt under your head so that you can have your very own purring feline pillow.

Being sick can get really hard to handle some times, and I mean mentally as well as physically. But I think every day gets a little easier to handle as long as I have my two furry kitty bombs by my side.

Except when I get a tail in the mouth… that’s not always so fun..

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Sanctuary

During my weekly pain therapist visit yesterday, my doctor and I started to discuss why the time I spend alone is so important to me. I shared that it was just nice to enjoy the quiet, that I wasn’t used to having a space to call my own. Indeed it was true in the sense that this is the first time I’ve lived alone in over 12 years.

The last time I rented my very own apartment I was living in Auckland, New Zealand, back in 2004. It had been right after winning that lucky scratch-and-win crossword, and I had found a cute, furnished, ground floor flat that I rented from an elderly woman living above. It wasn’t very big, the kitchen only boasted a hot plate, there was a washing machine in the tiny bathroom, and a line to hang laundry in the cold, damp yard. But it was mine. Mine. The first apartment I ever rented on my own. I loved it.

When I finally came back to the U.S. after my escapades in Europe in 2005, and decided on California, I couldn’t afford living on my own for longer than 6 months, and I eventually moved in with roommates. This was to be continued for five years until my boyfriend of the time and I got our own place. But living with a boyfriend is not at all like living on your own. You still share a kitchen, which means you’re the only one that ever does the dishes… You share a bathroom, which means you’re always picking up someone else’s wet towels off the floor… You share a bedroom, which means the bed only gets made by you…. Or at least that’s how it was for me.

When I moved back to Hawaii in 2011, alone, I went right back to living with roommates again. It wasn’t until last August when my living options ran dry, and I moved into my apartment paid for by the generosity of others, that I was finally on my own again. And what an astounding luxury it was!

What a treat to be able to go to bed whenever I felt like it, and not be kept up by a tv in the other room, or a loud discussion though the walls. How lovely it was to use a kitchen filled only with MY appliances and cookware. To make a cup of tea at 2am and not be worried if I was waking anyone up. The sheer joy of walking completely naked from my bedroom to bathroom without fear of discovery. These were things I’d never take for granted again.

My doctor pointed out that I had finally obtained my own ‘sanctuary’. Yes, what a perfect word. A sanctuary is exactly what my home is. I adore coming home from wherever I’ve been and relaxing on my couch and turning the tv on to something I want to watch on Netflix. I love laying down on my bed to play with my cats and taking an impromptu nap just because I can, and because my body demands it. I never have to worry about having clothes on, or working off of anyone’s schedule but mine.
I love my bedroom, and the way my king size bed takes up amongst the entirety of the space. I love my shower and the fact that no one makes fun of my seven different shower gels (variety is the spice of life). I love my gas stove, and cooking whatever I want to eat. And I love love love the relaxing nature of my little living room, with my newly acquired used couch, piled high with blankets and cushions for ultimate tv viewing pleasure.
It’s mine. All of it. And I have no desire to share.
There, I’ve admitted it, it’s true. I rarely invite others over to my home. If you have spent time there you should really take it as a very good sign. Because I like my space. I like everything in its place and not to be moved. My cats love their favorite spots on the couch and coffee table. And together we share our domestic bliss.
Of course I have friends and family over from time to time. Just last weekend I had a married couple over that I know for pizza and videogames. And what a fun day it was. Even more fun when the day had ended and my sanctuary was mine alone once again.

My home is my sanctuary. My sanctuary. I am comfortable there, so please help me stay there.

If you would like to visit my donation page to help me stay in my sanctuary, please visit Christine Lilley’s Life Fund. All donations are greatly appreciated. Thank you.