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.

Advertisements

Why can’t I have the cheesecake I ordered??

This is my first post in a few months… Mostly because my life really hasn’t been that exciting. Life with chronic illness gets like that sometimes. Our pain rises and wanes, we go through slow, inactive periods, etc.

Since its been awhile, you may be expecting a typical rant of hating the healthcare system, wishing doctors had better bedside manner, or the unending disbelief at how people treat the disabled. But, this is not the fruit I bear today. Today I want to talk about false advertising.

Now we may not realise it, but false advertising is EVERYWHERE. It takes a keen sense of snooping out the bullshit that the world is dishing out these days. Not just on that $236 eye cream made from expensive japanese fungus that ensures you’ll look like a 12 year old if you use it everyday for 3 months, cause anyone who falls for that is just asking to be scammed.

How about those medical commercials that tell us if we use this new biologic we too can look like the model they hired for the commercial, hiking up Everest like it’s nothing. I know Big Pharma is trying to sell some drugs, but come on. I’d like to be sent the file of every woman who took chemotherapy for a year and then decided to be a cross fit instructor because she’s cured.

I know I’ve covered this before, but recently I dealt with false advertisement, and it all came rushing back. I was at a restaurant this past Monday, and was perusing the dessert menu when I got excited. It said they had “American Cheesecake”.

Now this may not seem like a big deal to most, but I live in New Zealand now, where “real cheesecake” doesn’t exist. They make the unbaked version here which is more like a mousse. Im not saying that’s a bad thing, it’s just not MY thing. I love baked cheesecake. It’s firm, creamy, and always has a delicious buttery crust. So, when I saw American Cheesecake on this menu I was stoked. Of course I ordered it. It arrives….

(Insert exasperated sigh here)

WHY YOU LIE TO ME MENU???!!

What appeared on the plate in front of me could maybe have been identified as flan… but we would really be pushing it.

•No crust.

•Weird custard texture that tastes and feels reminiscent of hospital grade pudding.

•Very odd gelatinous layer on top that tastes like melted Lego

I was OUTRAGED. If they wanted a creative and inviting name they could have gone with anything. Why lie to me and say American Cheesecake??? Just say ” this is our version of what smelly gym clothes and a pudding cup would taste like if they had a baby”.

FYI- I think one of the worse disappointments in the world is ordering a dessert and it ending up being awful. This coming from someone who lives with chronic illness daily. You don’t mess with dessert.

RAGE!!

Four days later, I’m still stewing about it, AND I still haven’t had any goddamn CHEESECAKE!!

Hmm, I guess this did end up as a rant after all…

Here’s the thing… I’ve been sick for 5+ years. I’ve gone through things with my body that most couldn’t possibly imagine. There have been months where getting out of bed was akin to willingly cutting my own leg off with a chainsaw. I’ve worked at a desk when most would have been in an emergency room. When you become chronically ill, you learn to live at a level most would deem insane and impossible. We do it because we must. Or we wouldn’t be alive at all. So…

Moral of the story:

Don’t falsely advertise to the chronically ill. We don’t always have much to look forward to in daily life, so don’t make it worse lying to us!

The Choice

When I was eleven my mom and I were living in New Zealand, her native country. It was definitely a lot different growing up than growing up in Hawaii, an island chain that didn’t experienced the four seasons like most. Hawaii didn’t change into shades of autumn, there were no piles of fallen leaves in gold, auburn, and burnt orange. The worst winter I experienced was just hard rain that brought on humidity that only those living in the tropics would understand.

When we moved to New Zealand following her finalized divorce to my dad, my mom cautioned it would be colder, but it never felt that cold to me. I bundled up in sweaters for winter, and donned a rain coat in spring, but that was more for comfort than anything. I didn’t realize the temp change until dipping in the ocean for the first time. The South Pacific Ocean was much colder than the tropical climates I was used to. I could never get used to the icy feeling. Those who lived in New Zealand were of course used to it, stating that in the summer it was warm. But their idea of warm was my idea of Hawaii on its coldest winter day, when most wouldn’t jump in.

However, I was a born water baby. I have many photos of me as a small child, and I’m always playing next to a body of water. The Scorpio in me could never get enough, I was a water sign through and through. As soon as I was old enough my mom put me in swim school and I took to it like a fish. I won swim meets left and right, and excelled at anything water related.

So, when I was eleven we visited a famous Auckland region beach called Piha, located on the west coast. Piha was known for its good surfing, even boasting a surf club. It was a black sand beach as well, which I’d only ever experienced one other time before, and loved the novelty of it. Piha was also known for its strong currents and rip tides. So well known in fact that there were safety zones in which you could only swim between two marked flags, and lifeguards on duty to rein in swimmers or surfers who’d been dragged out by the fierce pull of the ocean.

On that fateful day back when I was eleven, we had been driving around with my moms boyfriend at the time and I had brought a friend along with me.

Rae was a schoolmate whom was certainly not my favorite friend, but was the one available to hang out that day. While we got along just fine, I had always sensed a bit of resentment from her (yes even at 12 I could see it). She was an only child as well, from a single parent household, but was raised by a father and not a mother. I often wondered if she envied my close relationship with my mother, and had noticed quite a bit of competitiveness.

We weren’t beach ready, and lacked swimwear, but we did have a couple towels on hand and Rae and I begged to go for a dip. Looking back now, the t-shirt and shorts combination I was wearing was definitely not the best swimwear for a beach like that. However I was eager to be in water again, and despite the chilling cold of the icy South Pacific, I jumped right in.

That day I learned a valuable lesson that has stayed with me for a long time. Rae and I unfortunately got caught in the rip tide that day, and we were pulled quite far out. We knew we were in trouble but started to make the slow and steady swim back in. After what seemed like forever, a lifeguard boat came out looking for people in distress. Rae was closer and I shouted at her to get his attention. Luckily he saw her straight away and picked her up. I waved at her to have him pick me up too, but she did something that has stayed with me for these twenty five years. She looked right at me and then turned her head, and motioned she wanted to go back in, knowing that I needed help but denying it to me. In that moment she couldn’t look past her resentment or whatever she felt deep in her soul, and made the choice to leave me in the sea.

I understand that at eleven perhaps she didn’t know what she was choosing, that she might not have had the capacity to realize my life was in her hands. Though I certainly had the capacity to know and realize if I wanted saving I would have to do it myself.

I don’t know how long it took me, but I slowly and methodically swam in. My water laden shorts and shirt did nothing to help my struggle, and I’d never realized until that moment how very streamlined my swim team uniform was. I thanked the universe that I was a swimmer and that perhaps I’d always trained for this moment, when my skill would be needed most. I finally made it back in and back to my mom, her parter, and Rae. I glared at Rae but said nothing to her, it wasn’t necessary, we both knew what she did. And after that day I didn’t spend any more time with her outside of school. I knew a bad apple when I saw one.

I have thought of that day many times. I’ve mulled it over in my head, picked it apart, tried to understand how and why. But the conclusion I’ve always come to is that we just can’t know what’s in the heads of others. We can’t know their demons, as much as they can’t know ours. Did she want me to drown? Probably not. Did she want me to suffer? Maybe. It’s not worth thinking about too hard.

Last week, I returned to Piha Beach for the first time since I was eleven. Twenty five years of fearing those strong currents, and in a way fearing the death that I could have met had I not been strong enough. I sat and let my feet squish in the black sand, watching the distant waves before me. It was then that everything started to make sense. I had an epiphany.

About a week ago I saw a post I liked on a chronic pain page that I follow on Facebook. It said..

“I often ask myself, why me? Why must everyday be a pain day? But then I ask myself – why not me. I would not wish this on anyone else and perhaps the universe gave me this because I can handle it better.”

Now when I first saw that I scoffed at it. I mean the universe sucks in picking people if that’s the case. I’d prefer a different present thank you very much.

But when I was at the beach, I started to think about it. And then I got back in the water after having being scared of its currents for almost three decades. The currents were really strong and I had to fight to keep between the swimming flags. There were moments where I wondered if I should pick my feet up and see how far it swept me away. It was then that the universe reached down and gave me a revelation that has taken my lifetime to conceive.

On that day, when I was eleven, I could have certainly drowned if I gave up. I was tired, my legs and arms ached at the weight of the water against me. I could have let go and let the sea swallow me. But I didn’t, because I knew I could make it. I knew it would hurt and it would be exhausting, but that I’d make it if I wanted to live.

Since I got sick, and then sicker, and then sicker, I have cursed the world for giving me this when there are healthy serial killers that walk the streets. Cursed the universe for giving me this pain and heartache when there are billions that live without it. But just like that moment in the ocean all those years ago, I was given a choice. There have been so many times that my disease has almost won. I’ve been hospitalized, been in cardiac arrest, I’ve blacked out because the pain almost consumed me. But I’ve always chosen to wake and deal with it. There have been times where I know my body would have given up if I let it. A moment in a hospital bed after I blacked out from arrest, a moment where I saw dark and light and knew I could choose a different path.

I chose to live. And sure, I don’t want to be sick. I hate my disease and the fact that I never get well despite the handfuls of pills they make me take, and the chemicals they pump into my IV. But I’m still alive, and I wouldn’t wish this on anyone, even that girl so long ago that turned her back on me. Maybe the universe did give this to me because it knew I could handle it. That I wouldn’t let it defeat me. Maybe that’s what it means to be alive. Having something to fight for, living for more than just the 9 to 5, and the mortgage payments, and the white picket fence. Sure, a lot of people have it better than me, physically, mentally, and financially. But maybe I’m different because I’ve looked into the darkness and turned away.

I’m alive not because my heart still pumps. I’m alive because I choose to be. I’m severely ill, dying slowly from incurable diseases. But I feel more alive because I know how fragile I am. I’ve looked into the darkness a few times now, and I’ve said no to its painless quiet. I’d rather live with this than not at all.

Now Piha Beach can be a memory of the first time I chose to be stronger than you could ever imagine. And choosing is beautiful.

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.

Our footprints

I recently ended a two week long road trip around the South Island of New Zealand. A trip that I never thought I’d be able to take at this point in my life.

At 36, I never thought I’d be struggling under the burden of multiple chronic illnesses. Never thought that I would live each day in pain and fatigue, wondering if or when it would all end. In March of 2016, one of the eleven doctors and specialists that I saw on a regular basis told me that I was living on a clock. A clock that no woman in her mid-thirties should have had to think about. A clock that was slowly counting down the time unto which my life would end. I had time, years in fact. But not decades, like most my age looked forward to. Ten years minimum, fifteen if I got lucky.

I took that news on my own, silently in his office, starting at my hands as if they were supposed to provide me with the answers he didn’t have. If they could find a medication that worked for me, more time could be bought. But they hadn’t found anything in the years leading up, and every day my disease turned more aggressive. Every time I visited a doctor a new diagnosis would be presented, or the bad news of a failed medication would be shared. Years of allergies and intolerance to the leading drugs for my diseases, countless failed treatments, and pain, so much pain. And then to hear that despite all my optimism I was going to die sooner than maybe even my own parents…

Five months later I landed in the Intensive Cardiac Unit at Queens Medical Center for ten days. I survived a “multiple cardiac event”, according to my cardiologist and the medical team that looked after me. Despite my doctors projections, my body had other ideas in mind for my time left on earth.

But something changed in me the night that I almost died. It’s not that I wanted to go… Sure some of us living with chronic pain have been down that road where we wonder if the pain is worth going on. Nothing as dark as giving into those thoughts though. And in the middle of my second heart attack of the night on my third night in hospital, apparently when the pain became too great that I actually blacked out, I had an epiphany.

No, I did not “see the light“. I mean yes, there was light, but clearly it was the doctors shining something in my face trying to wake me. I did however feel like I had a choice. A choice on whether to let go, or to continue on.

I don’t know how long I was in that place, probably only seconds. Later my doctors told me I could have died. And I knew if I had been willing to give up, I would have. But something had changed. Despite all the pain, and the knowing I didn’t have long, I still wanted to continue. Something told me that I had purpose.

A year and a half later I finally understand what that is.

Earlier this year I made the life changing decision to move to New Zealand, as healthcare was more accessible for me there as I was a citizen. More so than it was in the US, as it wasn’t affordable, even on Federal Disability. It was a chance to turn my life around as well, live healthier, make friends, maybe find my purpose.

I started bi-monthly Infliximab infusions in June, and had successfully gotten myself off most of my hardcore painkillers by October. I’d even lost a large portion of weight that I’d gained from years of Prednisone usage. I got some new hobbies, joined groups, and made friends, so many friends. I even started dating for the first time in two and a half years.

Sure, I was still in pain. My disease didn’t magically disappear because I moved. Chronic illnesses don’t drift off when you find love, despite what Disney movies try to teach us. I still spent multiple days in bed, fatigued beyond repair. Lung Disease reared its ugly head in a new diagnosis in August. Lupus followed soon after..

The change was that I felt I was around more people that supported me. People didn’t treat me as pitiful, and because of that I was able to let the real me shine through. I reclaimed the person I used to be, maybe not in body, but definitely in spirit. And I realise now it’s all because of footprints.

Just like others footprints made an impression on me during my illness, my footprints were helping others too. I accepted the love and generosity of friends and strangers in Hawaii because my blog had reached them in ways I didn’t know. I couldn’t see that the knowledge I’d learned in my own experiences were helping people just as those whose generosity helped me. Just by listening to a friend, or sharing a meal, I was leaving footprints on the journey of others, just as they leave theirs on mine.

Today as my partner and I concluded our two week vacation, one that I wouldn’t have taken had I not left footprints on his journey as equally as he left his on mine, I had my epiphany. We were talking with our Airbnb host, just as we were getting ready to depart for the airport, and she shared that she had lupus. She shared this only because I shared that I wrote a blog about living with invisible illnesses. Through this tiny piece of information she came to not only understand that she shouldn’t feel alone, but also some references I gave her for support groups. She had no idea the resources that were available to her, feeling isolated by friends and family who couldn’t or wouldn’t understand.

On the plane ride home I thought about my footprints… If I can leave pieces of myself behind, to help or to grow or to love, then no matter how much time I have left, that time was worthy. I have and will continue to make a difference on those who choose to share my journey with me, just as I share theirs.

Our footprints, my footprints, matter…

Let’s talk about karma

I had an interesting revelation recently about karma. See, for the longest time I thought that karma wasn’t on my side because of the chronic illness I suffer from. I figured things surely weren’t going my way especially if I was in constant suffering from this terminal disease. I’d hear other people complaining about their lives and I admit that it really frustrated me. Not because they aren’t deserving of complaints, no judgments here, but because they sounded so minor in my mind to what I was feeling. And that’s of course wrong. I shouldn’t judge others lives as much as they shouldn’t judge mine. I wasn’t mad at them, I was mad at my disease. 

I guess for a long time I felt cheated by life. Cheated by the world, for having this incurable pain that I had no control over. But then I had this great epiphany a couple of weeks ago. It was just after receiving an amazing gift from a friend. I had unfortunately just cracked one of my teeth, while eating boneless chicken, no less. I was desolate because I knew I didn’t have enough money to go to the dentist, let alone go and get a root canal and a crown, which surely would’ve been the case. I was super depressed and had posted on Facebook how frustrated I was that I was too broke to go to a dentist. And amazingly an acquaintance of mine reached out through a personal message and offered to pay for a dental visit for me. 

I was floored. Having only one other time experienced such generosity, I was shocked. 

Despite my protests, my friend insisted I go to the dentist the next day, which I did. And very unhappily came to find that it was not one tooth, but two! Could the news be any worse? Yes. It would cost close to $4000 to fix my teeth. I was even more depressed by that point. So I told the dental assistant to call my friend, whom would be paying for the consultation, and he would give her a credit card over the phone. While she went off to collect her few hundred, I sat trying to comprehend how I could come up with all that money for a problem that was a pretty big issue. They were my front bottom teeth, and it wasn’t something I could ignore. Imagine my giant surprise when the dental assistant returned and told me my friend had not only paid for the consultation, but also for my two root canals AND crowns. Almost $4000 in dental surgery and reconstruction!

I was speechless. After agreeing to come back later that afternoon for the dental surgery, I contacted my friend, worried at how much money he had spent. But he was so nice! Told me he was glad to help me, having known how much I needed it. Not only did he know I would never be able to pay him back, he didn’t even ask for me to. I could not believe the generosity of someone I didn’t know that well.

That  night, as I rested at home with a swollen and numb jaw, I also remembered the generosity of another person. Someone who had read my blog and sought me out because of it. A very generous person who treated my mom and I to an amazing meal at their restaurant, just as a way to say “I care”. Two people who barely knew me, but understood my struggle, my pain, had reached out and given amazing support in ways I didn’t know could happen to people like me.

And of course I have received support in many other ways, from many other people as well. Friends who have bought me groceries when I’ve run out of food stamps, or couldnt get to the store. Friends who’ve paid my phone bill because all I could afford was rent. People who didn’t even know me and donated to my fund to help me have a home. Family members who have helped get me to the er and the doctors office. Family that took care of my cats when I was ill or away. As well as two military families that took me in after I couldn’t work anymore. And all of this done selflessly, with no expectation of payback, or strings.

I have been very very lucky.  I realize this now. All this time I thought I had bad karma because of my disease. That I was being punished for any wrong doings I’ve done in my life. No. How very wrong I was. My karma is outstanding. How else to explain why so many amazing  people do amazing things for me in my life? How else to explain what wonderful people I have around me, who dedicate themselves to supporting and loving me? If I were a bad person, people would not help me as they do. You don’t give your generosity to someone you think isn’t worthy of it. Not generosity like I’ve received. 

Silly me. Bad karma? No no no.

My karma is outstanding. What a wonderful thing to behold. And thank you to all of the people in my life who helped me realize this.

I hope you’re thankful

Everyday I see people on the street living their lives, and I wonder if they are thankful for what they have.

I saw a woman at the mall yesterday with her arms full with shopping bags, they were literally dragging on the ground, and she was struggling to get a better hold of them. She turned to a man I presume was her husband and was grumbling about something I couldn’t make out. In the end she left her bags at her husband’s feet, took the credit card he pulled from his wallet, and left him sitting there looking exhausted and a bit sad. And I wondered… Was she thankful to have a husband that sat and watched her shopping while she strut all over the mall in search of the perfect stiletto? Was she thankful to live a life in which she was financially able to shop til she dropped? Was she thankful to have a life at all?

I often wonder if people realize how lucky they are to live the lives they have. If they are thankful to be living at all. How often do you really sit back and contemplate your own existence? How often are you thankful for the roof over your head, the food at your dinner table, the air in your lungs?
I think people, society, humans take life for granted. Becoming so accustomed to a certain way of life, we now take it for granted.

I wonder if that woman in the mall has ever known real hunger, or what it feels like to wonder where her next meal would come from? I wonder if the barista from my local coffee shop has ever been homeless? I wonder if any of my doctors have ever experienced real, chronic pain? I wonder how many people out there in the world wake up every day like I do, wondering if they will ever be well again?

I don’t take my life for granted.
I am very aware of how little money I have, and how very much pain I have. I am aware how my roof over my head is an illusion that could be taken from me in a second,  and how many meals I have left in my pantry. I know exactly how little true friends I have, and how many not so true there are as well. I am aware of who my real family members are, the ones that support me no matter what and would give everything and anything to help me, and I know the ones who just like the title.

I can’t take things for granted. If I did, I’d be in a very different place than I am now. I’ve learned who I can trust, and who I must be cautious around. I’ve learned exactly how far I can make my food stamps stretch, and how many meals I have til I’ll be hungry again. I’ve learned that you don’t need new clothes, music, and trinkets to be happy; just a $2 used DVD, a pot of hot tea, and two cuddly cats on your lap.

Take some time and have a wonder about it yourself. How thankful are you for the life you’ve been given? And have you said thank you for it?

If you would like to help me in my life please visit my campaign page:
Christine Lilley’s Life Fund