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.

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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.

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…

Personal Purgatory

I’ve been doing a lot of inner reflection lately, and it seems to me that those of us living with chronic illness do a lot of destructive thinking. I don’t think it’s on purpose either. I’m not talking about the inevitable depression and grief that comes with living with chronic disease, that’s a whole other can of worms… I’m talking about the depression we let ourselves slip into.

Rheumatoid Disease is shitty enough on its own, without having added Osteoporosis, Lupus, and Lung Disease to the mix. While I have accepted each of these as they have come, and deal with my diagnosis the best way I know how (smiles and realistic expectations), I find myself under a rain cloud. But it’s a rain cloud of my own conjuring.

There is a point that I think we all go through where we have had enough. The pain has become too great, or we lose support, or medical help, or all of these things, and we start to feel like we want to give up. I’m not talking about ending our lives, but more of an acceptance of defeat. At one point in our illness we accept that it can’t or won’t get better. It seems easier to accept that our disease has won, not only by conquering our body, but also our will. 

I realise that recently I have let myself get to this point. And I really do mean I let myself. At some point my loneliness joined forces with the disease destroying my body, and they decided to get married. And instead of dealing with my illness while trying to stay positive, I let myself slip into depression.

See, most people think we (the chronically ill) keep to ourselves because we want to be alone. When most of the time the reality is that we just don’t want to bring anyone down with us. We keep our feelings, pain, and sadness within, convincing ourselves that it’s better this way. In my case, I like to take it a step further by emotionally cutting myself off from others. I guess my logic is that I don’t want anyone feeling sorry for me, or treating me like I’m broken. But in doing that I end up putting up walls, especially around my heart.

I haven’t been in a romantic relationship in a long time. I’m talking years. Wanna know why?

I wouldn’t let myself. 

In hindsight I now see that my logic was really flawed. Because in keeping people at arm’s length, I not only hurt myself, but others around me as well. I started to use my disease as an excuse to not live my life. Not in the giving up sense, but I did throw away opportunities to have meaningful relationships with some great people because I justified to myself that I was saving them from dealing with my health issues. In truth, I was just building my own personal  purgatory.

It’s taken me a few years, but I’ve recently seen the light. Maybe not the light at the end of the tunnel, but at least a flashlight that will help me find my way. I realise now that letting people in is important. Sharing how I feel is important. It may not always get you the results you want, but it sure as hell is better than keeping it bottled up inside. I need to not let my disease define me as a person, and I have to remember thank don’t have to walk in this life alone.

No matter how many days I have left, mine is a life meant to be shared.  I will climb out of the purgatory of my own making. I will remember I am strong, beautiful, and worthy of happiness.

Uber Saved The Day

About forty-five minutes ago I was standing in an aisle of Whole Foods trying to grasp why they stocked my Tazo Chai concentrate with the cereal. Twenty-five minutes ago when my productive day turned into something else.

It was as I was grabbing a carton from the lower shelf that an old, short Chinese woman came out of nowhere, pushing her cart with the ferocity of one of the four horsemen of the apocalypse. She drove her cart through the aisle not caring who or what was in her path, pushing aside a younger man who was presumably reading an ingredient list, before descending upon me. Apparently no one was allowed to be in her vicinity as she too reached for a carton of tea, and in doing so rammed the front right wheel of her grocery cart into my right foot. The same foot that my Podiatrist earlier this week told me I had a torn tendon in. Ow! And about 10 other swear words that I won’t repeat.

Enraged, I look at the woman incredulously, waiting for what I could only imagine would be a profuse apology. Unfortunately, I’d be waiting awhile. Despite my painful howls, and under the breath obscenities, the woman was oblivious to the damage she had caused. Another patron walked over and asked if I was alright and if I needed anything. I loudly exclaimed that an apology would be great while pointedly looking upon my grocery cart attacker, and still, nothing. I was shocked as I watched the woman put carton after carton into her cart, and when it was clear that she needed to grab more which was blocked by my apparently inconvenient placement she finally looked up at me and said, “Hey you move”.

Wow. Just wow.

Needless to say, I didn’t move. I, as well as the good Samaritan that took the time to help me, just stood in her way, staring her down. By this point, the other people the woman had pushed past had gathered a bit, all clearly wondering what her problem was. I’m sure some figured she was perhaps a tourist, who spoke little English, and clearly lacked manners. But I think most of us knew better. This was just one of those people, oblivious to those around them, in a big hurry for no good reason.

I cleared my throat, spoke clear and concise, and said “Excuse me, you just rammed your cart into my foot, which by the way is already hurt. See the bandage?”

The woman frowned at me, looked at my foot, took a hold of her cart, and started to walk away!

FLOORED! SHOCKED! HOW F***ING RUDE!

The good Samaritan, went to stop her by putting his hand on her cart and demanded she apologize to me. She looked at me with a smirk, pushed his hand off her cart, and took off down the aisle, presumably to meet back up with the other horsemen. Bitch. The four other people in the aisle and I just looked at each other. Wow.

I mean I’ve faced rude people before, but this seemed extreme. What is the big rush? Everyone is in such a hurry these days, and it appears like it’s getting worse. People speed in the streets, even if it’s just to get to the next traffic light. Customers drive their carts through stores like their on crack, just to rush home for what? What is so important that they give up safety, manners, and common decency? It’s sad, really.

 

Now after this unfortunate moment had ended, and I limped to the register to pay, I realized I had a real predicament. My already aching foot was now throbbing painfully. Geez, I hope she didn’t break it. And what a depressing thought it was that the bus stop now seemed so far away. Ugh.

And then I remembered it! Uber! My life saver! I pulled out my phone, went into the Uber app and requested a ride. 5 mins later I was in a nice guy’s Toyota Tacoma halfway home, already daydreaming about my foot bath and chocolate ice cream.

So despite my near brush with death, or maybe just amputation by crazy Chinese lady, my day was to be salvaged. Uber saved my day, for the low and affordable price of just $4.76.

Thanks Uber.

Hello Bed!

Invisible

Three years ago I used to think I could stand to lose a few pounds. Maybe just off my belly or hips. I wasn’t fat, not even close. I had a beautiful curvy body, with perky boobs, and (what I now realize) a great butt.
But, society pushes images of model thin women on us. Also there’s that constant reminder at the checkout line at the grocery store that we should be buying health food magazines, and basically everyone should just be a vegan hippie if you want the perfect beach bod. The need to be skinny swirls around us every day. So, back then, with societal peer pressures, I was convinced I’d be truly beautiful if I could knock off the slight muffin top thing I had going on.
Gosh, how stupid I was. I look at pictures of me then and realize how beautiful I already was. I didn’t need to change one thing about myself.

Fast forward three years and I look in the mirror to find a stranger staring back. I never knew I could look like this person invading my body. Who is she?
Three years of prednisone has caused my body to double in size. The doctors say it’s water weight, but if that’s the case then someone needs to take a needle to this balloon. This isn’t my stomach, this round thing protruding out in front of me. I look pregnant.
My breasts have tripled in size, but not in a sexy, voluptuous way. They are heavy and hang, and now I deal with breast sweat and the rash of pimples that comes along with it. Gross.
But I could deal with the fat body had I at least still looked like myself. I don’t though. My doctors call it ‘Cushingoid’, but prednisone users more commonly refer to it as having ‘Moonface’. The face in the mirror is not my own. It’s round and flat, my eyes and once beautifully defined cheekbones have become lost in the excess skin. I don’t like her. She’s ugly, and I want her gone from my life.
Three years have past since I started this journey of illness, pain, and suffering. I’ve lost so much of who I used to be. And the only thing I’ve gained is more pain and 70 pounds of “water weight”.

But you can’t see my suffering when you look at me.
You don’t see the holes in my bones that look like the bones of an 80yr old woman, and not those of a 34yr old.
You can’t see all the fractures that Osteoporosis has given me, the tiny breaks that cause monumental pain.
You see me limping or walking with my cane and figure I probably had an accident, not that this will only get worse and in a few years I’ll be in a wheelchair.

My disease is invisible.

You see all this disgusting weight and think I must over-indulge, binge eat, or just can’t say no to food. You don’t know that I fill my days with fruits and vegetables. That I’ve cut out coffee, soda, sugar, and fast food. That my life is full of dieting and exercise and yet as long as I’m on prednisone I will continue to have this round lumpy body. And that there is absolutely NOTHING I can do about it.

I move slowly because the flesh around my joints are inflamed and infected. If you took the time to look closely you could see the swelling in my knees, how fat and puffy they are. You could see that my hands seem abnormally large due to the inflammation. That my knuckles are discolored and squishy. That my feet look like football’s with more swelling.
If you took the time to see how slowly I have to move. That every step I take is calculated to ensure I don’t hurt myself. If you watch my face closely you will see the pain there that I try desperately to hide. That every single movement is like a butter knife slowly being pushed into a bone.
But most people don’t see that.

Because my disease is invisible.

People only see what they want to see.
A fat girl.
A pregnant girl.
Too lazy to walk quickly.
Using a cane for attention.

My disease is invisible.

They don’t see my reality.
The excruciating pain of my day to day life.
Wrestling with myself to do daily tasks.
Willing myself to stand up without crying out.
Not being able to dress myself on the bad days.
Needing help to shampoo my hair.
Crying in my bedroom when the pain and suffering becomes unbearable.

My disease is invisible.

I am invisible.

If you would like to help support my illness financially please feel free to make a donation:
Christine Lilley’s Life Fund
Thank you.

My disease is invisible.