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.


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 may act like Super Woman, but resemblance stops there

So here’s the thing, just because I appear to be really optimistic and strong minded about my disease and ongoing issues, does not mean I’m Super Woman. I may rock the cape look well, and even pull off wearing my underwear on the outside of my clothing, but positive imagery stops there.

I’m starting to see that people around me think I’m indestructible. I think my optimism and can-do attitude has backfired a little. Yes, I like to stay open minded, and I don’t let my disease get the best of me. But here’s the most important thing to remember… I’m still human! Just because I have a smile on my face, or keep my pain to myself, does not mean I’m not in pain! Or that I feel fine! Cause FYI… I feel like crap!

It appears that people are under the impression that just because I hide my emotions or physical pain, that I in fact have none. I recently fractured my right ribcage in several places and I can’t even vocalize how much pain I’m in. It’s excruciating. But because I’m always so bright-eyed and bushy tailed about things, I think it’s coming off like I’m indestructible and in turn feel nothing.

I feel. I’m in pain. Chronic arthritic pain and fresh new severe broken rib pain. It hurts. Moving hurts. Breathing hurts. I am woman, hear me roar. But also I am woman with chronic Rheumatoid Disease and a laundry list of other bad issues. Please treat me accordingly.

When people let you down

Disappointment is a fact of life. It’s going to happen no matter what, at some point, whether you want it or not. Most likely not as I don’t know anyone who wants to be disappointed. But what I’ve come to find during my time being ill is that disappointment hits me so much harder than if I were a normal healthy person.

I remember the days before this, the days I lived normally, had a regular 9 to 5, dated, had relationships, went out with friends at night, etc. There were definitely times where I felt rejection, disappointment, sorrow; I mean these are all parts of human nature and connection. But I got through it, found a way to move on or start over, process the feeling and swallow the hurt, continue on with life as you need to.

But now, when people disappoint me, or upset me, or do something purposefully hurtful, well it’s just so much worse. I guess it’s because when I dealt with bummer situations before, I was able to shrug it off because that was life, you need to take things with a grain of salt, not dwell. And at the end of the day I always knew that there were people out there that just suck. I mean we can’t all be fabulous!  As I see it if people’s actions or words let you down you have two choices…

1) You can get mad, throw a fit, and let your sentiment be known that you are PISSED.


2) You can shrug it off. Take the higher road. Move on and learn from the experience, or mistake, whichever scenario the disappointment encompasses.

But when you’re sick, there’s an option three. Now I guess it depends on your illness, be it short lived, or aggressive and deadly like many of us unfortunately. Anyways,

3) Brood. You sit, you agonize, you wonder. And because you’re sick, and like in my case have time on your hands, you go through the scenario or experience or rejection or conversation and pick it apart piece by piece to analyze it.

There’s no sticking a pin in this one for later, you’ve got all the time you want right now to sit, ponder, and brood. Why did that person flake on me? Why did that person hurt me? Why wasn’t I invited to that BBQ? Why was I not thanked for helping someone out?

They may be small things, or large, but when you’re sick, a disappointment that seems small to anyone else is magnified to you. And you can’t stop it. It’s one of those festering sores that you pick at slowly even though it’s started to scab over. You don’t care. You have all the time in the world. And I won’t lie when I say some of my disappointments probably seen silly and ridiculous to  others.

For example, yesterday my favorite hair clip broke. Small, silly, replaceable in the eyes of someone else. But for me, I was really upset. I’d had that clip for ages. I’ve never seen another one like it, deeming it irreplaceable in my eyes. Also being poor and broke makes hair accessories not high on the shopping necessity list. It was very handy, I’d always kept it in my bag in case of hair emergencies. I was really bummed. Now, I didn’t cry about it. I mean it’s a piece of plastic. But not having a lot of money at my disposal, or a car to run around looking for a similar product, made the loss a pretty big bummer for me.

On a much larger scale, I was disappointed in someone’s actions towards me last month. So disappointed that it haunts my thoughts to this day. A promise was made, a very important one. And then the person reneged. I shouldn’t be that surprised; the same person had flaked on me in the past several times. But being sick now, that disappointment hit me like a ton of bricks. Why had that person made a promise they knew they wouldn’t keep? Was it a vengeful decision done on purpose to cause me pain? Or did they merely just not realise how hurtful their flakiness could be? Why make a promise? Why break it? Why offer help at all if there was never going to be follow through? Tons of similar questions swirl through my head constantly. I often wonder if I would be this mad or disappointed if I were healthy. If I still worked my 9 to 5, had savings in the bank, if I were more independent, more mentally put together, would a rejection or disappointment such as this one, hit me as hard? I guess I’ll never know.

The upside about disappointments when you’re ill is that since you’re on limited time or borrowed time, or just aware of time in general, you’re less likely to accept people’s bullshit. When I was healthy I was more apt to accepting apologies, or even just bad behavior. I was willing to sweep things under the rug or look the other way. Not so much now.

Mess with me now, flake out, treat me badly, reject me, disappointment me… I don’t need to keep you around. I have no time for disappointing behavior. My time is precious, and the people who share it with me treat me with the respect that I deserve. If you want to behave badly, you can do that with someone else that will put up with your BS. Cause this girl right here, isn’t having it.

If you’d like to help me become more independent and less likely to fall for the BS help of others, please donate to my life fund. I am trying to raise money for rent and life necessities while I’m ill and can’t work.

Christine Lilley’s Life Fund