For over four years I have allowed myself to entertain the idea that maybe one day I would be well. It would usually come after periods of having little to no pain flares, or a burst of energy after weeks spent bound to my home. Small fantasies if you will, of seeing myself hiking again, or being able to travel more of the world like I’d always wanted to. And then these visionary bubbles of hope would be popped every time a doctor would tell me I was getting worse, or that I’d procured another illness, to add to the ever increasing pile of shit I was already dealing with.
One of these frustrating moments was just a couple of months ago. It was on the same day that my rheumatologist told me I could re-start Remicade, a drug that had started working for me just before I left Hawaii. In hearing this news I was in such a great mood. Having only received three infusions before leaving the island, the drug had already produced amazing results, doubling my energy, and lessening my pain flares. I was stoked.
However, that excitement was short lived when my doctor informed me that recent test results showed I had developed Pulmonary Fibrosis, a lung disease that can be fatal. It turns out that the severe inflammation that Rheumatoid Disease caused in my body had produced scarring on my lungs. It wasn’t yet determined how bad it was, and I was sent for more testing including blood labs and x-rays. On top of that it was also concluded that I likely had Lupus, another autoimmune disease, that my doctors had suspected for many years.
I was devastated. Why was it that every time I started to feel like my disease was turning a corner, I’d turn that corner and walk smack into a brick wall?
Depression came on swift wings with the winters rain, and I started to seriously doubt the years I had left. Research came and went. I talked to my therapist in what seemed like a never ending loop of what if and why me‘s. Every part of my life looked gray, as if I was wearing Eeyore glasses.
But just as nature surprises us with change, so did my mood. The storm in my head began to lift, and with my Remicade infusions, so did my heavy heart. I hate to sound like a cliche and say that my rose colored glasses faded away and every thing seemed okay again, but that’s really what it was like. Without knowing how or why, I found my happiness again, and moved forward at a surprising pace.
I started to exercise a lot more, having finally found the energy to do so. I took long walks that went miles, and explored areas I’d only known as a child. In one of these walks I stumbled across a Cat Lounge, an awesome place where you could literally spend hours petting cats, and resting as they took naps on your lap. Some days, I would just walk up the hill behind my house to a little cafe, sitting by the window sipping hot chai lattes, and writing for hours.
With this burst of new energy, I started to see friends more often, even venturing out more on weekends. For the first time in over four years I was really feeling like my old self again. I even went on a couple dates, and while none of them panned out, it felt good to be out in the singles world again. Energetic, confident, and hopeful.
Now, you’d think that this lovely change in my attitude and physical self would have been celebrated by others. I figured after years of hearing my depression over my illness, lack of enthusiasm for life, and the dreariness of daily pain, that friends and family would rejoice with me that I was starting to feel a little better. Especially with the fact that I had been able to lose 80 of the 90lbs gained on steroids and pain management medications. I mean I wasn’t cured (there is no cure), but it felt good to feel good, even if only for awhile. I knew that there could be periods of wellness, followed by periods of illness. But I wanted to embrace the wellness as often as I could, and make the most of it, while I could.
To my surprise, not many in my life shared my zest in this. You know that phrase “misery loves company”? Well, this was a cracked out version of that. I received a lot of “Well, don’t get your hopes up”, “You’ll probably be sick again next week”, or my favorite not favorite “You could still gain the weight back”.
For fuck’s sake!
Look, I’m quite aware that I’ve been sick-its my body! I’m quite aware there is no cure-I have seen more than a few doctors! And I am beyond aware that my illness varies from day to day, if not hour to hour. But do you understand that when you have a chronic illness that you’ve been told may very well kill you, any day or moment where you feel genuinely well needs to be enjoyed? Can you please let me relish this time where my joints aren’t screaming at me, and I don’t want to cry at the loneliness, and I can just be happy if only for a moment?
Its like I am not allowed to feel well, even if its for a short while. I am the sick person, the sick friend, the sick family member. If I display even a hint of joy, energy, or confidence, then suddenly its this big deal. As if maybe I was faking it the whole time-because yeah, I just faked four years of excruciating pain and fatigue, for sympathy. Instead of letting me be happy, I am berated with “I guess you’re not that sick after all” or “I thought you were too sick to get out of bed”.
For fuck’s sake.
I am NOT sick 24/7. Yes, sometimes I can be sick for days and weeks on end. Sometimes it feels like my entire life is me standing under a rain cloud that follows me everywhere, except instead of rain and thunder, I get new diseases, cancer scares, and Osteoporosis. That sometimes its like I’m in a crowded room screaming and no one can hear me or cares.
So you’d think that when I am feeling good people would be happy? Nope. In the land of Chronic Disease, if you’re not sick and miserable all the time, then you’re not really sick. Or you’re being too optimistic and you need to be brought back down into the ditch of incurable misery, and stay there.
Well… I say NO.
I am not sorry that I don’t look sick all the time. I am not sorry that I don’t feel sick every moment of every day. I am not sorry that you can’t be happy that I can get a moment of peace every now and then. I am not sorry that my new medication makes me feel better some days. I am not sorry that I am not the vision of sickness that you need me to be.
Some days I feel bad, really bad. Some days I feel like I want to give up and die, seriously. There are days when I wonder how I’ve made it as long as I have. I often wonder if it would truly be better if I let my diseases consume me. Yes, it does get this dark inside my head. This is life living with chronic illness.
On the days where the pain wanes, and the sadness cloud clears, and I feel like I’ve woken up like a normal person… let me have that. Enjoy the pain freedom with me. If I’m in an optimistic mood, be optimistic with me. Be happy with me, if only for awhile. Don’t make me feel like shit for wanting to spend one day, one hour feeling like a normal woman. In a life where I don’t know how many normal days I have left, let me appreciate the time given.
Let me be okay, if only for awhile.
Even before I got sick and my whole life turned upside down, my dad would tell me not to bother with relationships and love. From a young age he told me to concentrate on school and work, that I didn’t need to worry about the complications of romance. Despite my contradictory feeling on this matter, I think it really affected me subconsciously throughout the years. we are our parents children, right? Despite our feelings on how we swore to not be like our parents, to not make the same mistakes, we do, don’t we?
My parents divorced when I was very young. My mom raised me primarily, and I saw my dad every other weekend while we lived in the US, until my mom moved us to New Zealand when I was 10. Despite my dad’s feelings on the subject, I didn’t like spending time with him when I was young because he was so strict, and at times cold. Its no surprise to anyone that really knows me that my dad and I have not often seen eye to eye. He has always voiced his opinion on how I was raised, how he felt my mom kept me from him, and his general dislike of the situation after the divorce. No matter how many times I’ve told him I was the one that didn’t like spending time with him when I was little, and that I would beg my mom to not let me go to his house. He “forgets” every time I try to stand up for my mom and set the story straight, and remind him of who left whom. He left. Not us.
I think a lot of my fear of him when I was growing up was how much his “advice” felt like insults and put downs. To this day, he will always stand by his word that he was being parental, and voicing concerns. But when you’re 13 and your dad asks if you’re pregnant and pokes at your belly, that barely extends from your hips, well you tend to fear the comments and advice. To be clear, I was NOT pregnant, I was growing into my body as any teenage girl would.
When I reached my mid-teens was when the “you don’t need a boyfriend” comments began. I was not to be deterred, and was as boy crazy as any hormonal girl of my age. But, when it came to the time of liking someone, I found myself to be quite commitment phobic. This went on long into my early twenties, and even gave me problems in my first long-term relationships. For years I believed that I wasn’t phobic of relationships, that I was just being sensible in not attaching myself to someone. It wasn’t until I found a really good therapist that helped me primarily in dealing with my disease, that I started to understand what had happened.
Subconsciously, I was following my dad’s advice for years, decades even. When I started working in my early twenties, the comments changed from “you don’t need a boyfriend” to “you don’t need to worry about marriage”. Now, I will never really understand why he said these things to me. I don’t know if he truly feels that relationships are a waste of time (he’s in his second marriage, so I can’t see that being an anti-commitment comment), or rather that he thinks I just shouldn’t waste my time. Or maybe he thinks I’m incapable of dealing with them, or that there are more important things I should be concerned with. Which may make more sense now that I’m sick, but these comments have been made since I was 10…
My point is, despite my feelings that I always wanted relationships and eventually marriage, I think his comments subconsciously deterred me from having them. Or rather, having healthy relationships.
Now, I am 35. I suffer from several chronic illnesses, one of which will eventually lead to my demise. And I am alone.
With my illness comes the desire to not suffer alone, and I wonder if I’ve lost my chance to find someone. Days pass into weeks that pass into months, and the loneliness sometimes feels unbearable. Yet now, instead of that incessant nagging feeling that I shouldn’t worry about relationships and marriage, I now incessantly worry that I shouldn’t bother with them due to my shortened life expectancy. Is it fair to engage in love with someone when I can’t give them forever?
I have no one to blame but myself. I listened to the wrong advice for a long time, and now that I’m sick, I worry that I lost my chance to enjoy something I’ve always craved, but never let myself truly have. I can’t get over the feeling that it might be unfair to want a lasting love, if that love might only last five to ten years depending on my hypothesized life expectancy.
These are all what ifs and maybes. But sometimes I wonder if my life would have been different if I didn’t grow up with the whisper in my ear that relationships shouldn’t matter to me. Everyone deserves love, even if they are lead not to believe it is so. Both of my sisters have both married, and here I am dying of a disease that leaves me feeling more alone that anyone can imagine. Sometimes I wonder why my dad told me I shouldn’t bother with romance. Was romance to be avoided by everyone, or just me? And why was I undeserving?
Sometimes I feel so bound by my skin and bones. I wonder how it came to be that I was trapped by the very thing that makes me alive. My body feels like a prison and my disease the warden who lords over everything out of my control.
It’s amazing how you can feel completely alone in a world full of people. I have so many in my life who care for me and help support my medical needs. But when you have an illness that is more severe than most doctors have seen, how can you expect regular people in your life to really understand? Yes, they nod and listen to your answers to their questions. The polite questions that broach just enough of the topic to feign interest, but vague enough to not beg a lengthy answer. At least that’s what most hope. The problem with autoimmune disease is there is no simple answer. You try to answer the way you think they’d like, but their eyes glaze over after a minute. So you learn to clip your explanation to something short and perfunctory, knowing full well it doesn’t even uncover the tip of that iceberg.
This is one way you can start to feel really alone in your body.
Your doctors can’t even figure out why you’re so sick, can’t explain why as time goes by more diagnosis’s are added to the list, why every medication doesn’t make a dent in your pain. They have no idea, and you have no idea how to explain what your body has become.
Sometimes I sit by the window for hours, staring at the birds in the garden below. My jealousy of their absolute freedom sits heavy in my throat, like a dry piece of bread I can’t swallow. I listen to music without hearing the lyrics, barely comprehending when one song ends and another begins. Yet the sound soothes me. Reminding me that other people have felt as I do, trapped in their bodies and minds, sharing their feelings through melody, as I do with words.
I watch those birds, extending their wings, turning their faces to the sun, free to fly where they choose. I sit and watch them, as I watch my own hands curve and deform from pain. I wonder if they feel as we do, fear as we do. Do they sit and wonder how they fly and why? Are they alone in their minds as I am, wondering when will be their last flight?
This morning I start treatment again, after a 4 month hiatus while moving and settling in another country. It’s been a long time since I’ve had medication in my body that actually helps my Rheumatoid Disease, as opposed to just put a drug band-aid on it like steroids do. Four months is a long time to go without critical medicine that helps your mobility and pain.
Normally, I am pretty open with others about what treatments I am on, preferring to be upfront about everything. I am not ashamed or embarrassed that I used opiates for a long time when the pain was too much to bear. I won’t lie about the fact that four years of steroids caused my weight to go up so high that I didn’t recognize myself in the mirror. I am also not going to be bullied into the fact that a lot of people don’t like when I use the term chemotherapy to describe my treatment.
This is one of the key issues that we as patients deal with in Rheumatology. Not many can grasp the fact that our diseases are very serious and can take lives. Everyone just assumes, because it’s more well known and talked about, that the big C is the really bad one out there. But Cancer is not the only thing that kills! Many die from complications of Rheumatoid Disease and autoimmune diseases. The numbers would shock you. But because it’s not cancer, or you haven’t heard a lot about it, it can’t possibly be as deadly right? WRONG.
I am part of a very supportive group on Facebook for women suffering from Rheumatoid Arthritis/Disease. We were ripped apart about a month ago by a sickening argument over using the term chemotherapy when talking about some of our treatments. An alarming number of women were very negative about the fact that some of use the very name our doctors themselves speak. Angry that despite the fact that we are in fact on chemotherapy drugs, and go through many if not all the symptoms of dealing with it, we shouldn’t be allowed to say “I’m on chemotherapy”. As if cancer patients are the only ones with the right.
Here’s where I get angry. This isn’t the damned Pain Olympics. It’s not a competition on whom is more sick and who can have what treatment! We are all sick! Some of us dying! Have some fucking empathy!
My doctors, including my Rheumatologist, all refer to Remicade as a “chemotherapy drug”. Before starting a round of infusions, I am given the same list of side effects and ailment symptoms that any other patient on chemotherapy gets. Infusions, while helpful to my RD, are brutal on my body. They make me nauseated, I vomit, I sleep for hours with no real rested feeling in sight, I lose weight, my hair falls out, and my skin turns white and crepe-like. But it’s not cancer related, so it’s not really chemotherapy right? WRONG.
If it’s not really chemotherapy, then why has my Lymphoma and Cervical Cancer gone into remission after being on it? If it’s not chemotherapy, then why do I experience the same side effects as those with the big C? If it’s not chemotherapy, then why do ALL of my doctors use that term?
Because…. It IS Chemotherapy. It may not be the same doses as different diseases and illnesses, but it’s the same drug. It’s a drug that helps many people to live better lives, that they may not be able to have otherwise. It helps me. That’s all that matters. I have the right to call it what it is. It’s chemotherapy, and it’s saving my life.
So, today I will make my way down to my local clinic. I will be weighed, have my temperature taken, and put into a bed. I will be monitored like a hawk, because these are serious drugs. Four hours later I will emerge, exhausted beyond comparison to anything I’ve ever experienced, nauseated and yet hungry. I will go home where my mom will watch me for 24-48 hours to make sure I don’t get violently ill-it’s happened many times. I’ll barely keep my eyes open while I attempt a few bites of food and sips of water, before falling back into coma-like sleep for days. I’ll continue to lose weight, dark circles forming under my eyes, my skin thin as paper, more hair falling out with every shampoo and hair brush. But I’ll be closer to pain free than I ever have been.
I have Rheumatoid Disease, and I’m on chemotherapy.
I recently had coffee with an old friend, and we talked a lot about past relationships. So much so, that I’ve been dwelling on the memories of my relationships for days now. Truthfully, I’m sneaking up on two weeks here. Two weeks of late night insomnia, where my mind instead of doing the nice thing and allowing me to sleep, decides to remind me of every single person I’ve ever dated. Truth be told, it’s a long list, and sleep doesn’t seem to be getting any closer.
When I was younger, you could have called me “boy crazy”. I had a lot of crushes. Although, I was also shy, not having my first kiss until I was fourteen years old. An embarrassing affair at a friends birthday party, with all of my comrades watching hungrily to see if I’d mess it up. I did. Turned my head the wrong way, smashed noses.
In time I got over the shyness, and in turn learned how to kiss, I suppose. With my seventeenth year came graduation from high school, my first real job, and college. I don’t quite know how or when it happened, but that year I blossomed. No longer did I feel like an ugly duckling, or shy as a mouse. I grew more confident of myself, and finally started to understand who I was as a person. That’s when I started to really date.
As the World Wide Web grew more and more popular, and I was gifted a computer from my father, I found myself drawn to chat rooms where I could flirt more easily, having a mask of anonymity to hide behind.
By the time I went to university in New Zealand, I’d found my stride in the dating world. My best friend Carmel and I used to constantly joke that this year or next year would be the year we would find boyfriends. And while we always gave it a laugh, and crushed on numerous, I don’t think we were ever fearful of not finding a life companion. It was only a matter of time.
Fast forward fourteen years, and here I am at thirty five, still single. Not that I haven’t dated. I’ve held two long term relationships in that time, as well as dated countless others. Do not misunderstand me, it’s not that I fear commitment. It’s as they say, I just haven’t found “the one”.
For the last two years I could have sworn it had to do with my illness. I mean I did have all my hormones turned off due to long term pain management medications. Over a year of no libido is a long time. But now that I’m off them, and my hormones and libido are back in check, I can’t really use that as an excuse. Perhaps it was my insecurities all along that kept me alone. Confidence shows, so of course insecurities and doubt can show as well. Throw in a good dose of self loathing due to weight gain, and you don’t really paint a pretty picture.
So here I was, in a coffee shop, listening to my old friend talk about how they couldn’t find anyone to date who was worth it. And it catapulted my mind into a wormhole of every relationship, crush, sexual encounter, and glance, I ever had with another. Suddenly I was up at night wondering where I had gone wrong, if I should have given one a chance, or if I had wasted time with another. Your mind sucks that way. Anytime you want to sleep, it’s always there to count on with sneaky little unspoken comments like “they could have been the one” or “should have given that guy a chance” or “too late now”.
I hate my mind at 3am.
But despite my mind attempting to screw my sleep pattern, I did learn something of all this. My disease was never keeping me back. It was me. And all those other relationships and crushes and scenarios, well they didn’t work out because they weren’t meant to. My heart was still on reserve for the one who was worth it.
We can’t judge our relationship statuses on the timing of others. My old friends dating life might not be working because he’s yet to meet his penguin (yes, I am using a Never Been Kissed reference, deal with it). Carmel found her soul mate eight years ago, and married him last year. It doesn’t mean that I will never find love. It just means that it’s not my time. Both of my sisters have married already, one being ten years younger than I. Doesn’t mean I won’t. And it doesn’t mean I will. But I’ve got to stop thinking negatively about dating.
People say you’ll meet someone when you’re ready. I don’t think I was ready before. But that was then, and this is now.
It’s been four years now that I’ve fought severe Rheumatoid Arthritis. Four years of pain, suffering, sleeplessness, weight gain, and judgement. Not only judgement from the outside world, at a disease that no one can see, but also judgement from myself.
Despite my doctors and nutritionists telling me for YEARS that the weight gain wasn’t my fault, that it was the steroids keeping me mobile, I’ve hated the weight that has sat on my body. Being six feet tall has had its advantages though, the weight distributed evenly, and I was never really obese looking. Even though doctors told me I was toeing that obesity line. My long legs and torso helped slim me down, and at my heaviest, I really wasn’t that bad. Or at least that’s what everyone told me.
I, on the other hand, hated it. Gone were my hip bones, and curvy figure, now encompassed in too much flesh. Gone were my high cheek bones and smooth skin. My face now had taken on the characteristic of Prednisone called Cushingoid, or “moon face”. My eyes were sunken in and dark, my chin now had a friend to play with, and my hair hung lifelessly to my shoulders. I did not like the girl in the mirror. She was a stranger, an impostor, and yet there was nothing I could do. Not that I didn’t try.
I spent three years dieting, trying every new fad and hippie trick, trying to lose the steroid weight. I almost gave up hope when my Neurologist told me I wouldn’t lose it until I stopped taking the steroids altogether. Well, shit. I couldn’t do that yet. They were keeping me alive, up and moving, and out of bed, for the most part. I started to hate the girl in the mirror. I blamed her for having to buy bigger clothes. I blamed her for how I could never quite look right. Clothes just didn’t fit how I wanted them to, and no matter how much makeup I put on, I couldn’t lose the dark circles under my eyes. That bitch.
Then four months ago my medications changed again, and I was put on a form of chemotherapy. Man, were they not kidding with the warnings of nausea and vomiting. I spent the better part of two months puking. And when I wasn’t puking, I certainly wasn’t eating. I lost my taste buds and the desire to eat altogether. And the pounds started to melt away. But that wasn’t the healthy way to do it.
Eventually the nausea and vomiting stopped. Well, for the most part. My taste buds came back and I enjoyed food again. But my stomach had shrunk. So now I could only eat very little at a time, and only need one or two meals a day to sustain me. My weight continued to drop. I knew it was happening because my jeans started to get really loose. I was using holes on my belts that had never been touched before. For some reason though, I still couldn’t recognize the girl in the mirror.
I knew I was changing back to my original self. But so much time had passed that despite the fact that I’d lost 52lbs, I couldn’t see it. I started to buy smaller clothes, opting to wear leggings more because they were so versatile (plus I loved that I finally looked good in them). I started to enjoy clothing shopping again, although I would constantly pick out sizes much too large for me, because I still couldn’t comprehend the weight loss.
I stared at that girl in the mirror. Was I in there? I couldn’t see myself, but others could. My mom kept commenting on how skinny and slim I looked. But I was almost defensive about it. There was nothing wrong with being bigger, I’d say. But the truth of the matter was that I not longer was.
The weight continues to melt off my frame, and I’m starting to see my hip bones again, and my belly doesn’t obstruct the view of my feet. My face has slimmed down, and while I still have dark circles, they have faded and I’ve found makeup that covers them.
But I still don’t recognize that girl in the mirror. I know she is me, but she is not the me that I see.
March 29, 2017
This has been a very turbulent year for me so far. I have uprooted my entire life for the search of something better. Something healthier.
For those of us that live with terminal and chronic diseases, change does not come easy. I learned this the hard way. I am still learning.
When I made the colossal decision to go to New Zealand in search of better (cheaper) healthcare, I’m not sure if I really understood the change I was undertaking. See, I’ve had the travel bug all my life, and I’ve bounced from state to state, and country to country, more times than can be counted on two hands. So a giant exploratory adventure to New Zealand didn’t seem so giant at the time I put thought into action. In fact, I viewed it as one of my more minor adventures. I mean, I was already a NZ citizen, and had lived there for over ten years sporadically throughout my life.
What I didn’t take into consideration, and perhaps I should have, was that I hadn’t been back in NZ since 2004. That’s 13 years! I’d never been away for so long before, and I am embarrassed to admit that I didn’t even consider that it might be a culture shock after all this time. I was so used to moving around so much in the United States, that it truly did not occur to me that going to a country that I hadn’t stepped foot on in 13 years, might have changed in my absence.
It was really hard when I first got here. And I will be the first to admit that I immediately (I’m talking within the first week), wondered if coming here had been a mistake. Maybe I was so excited for change that I hadn’t really taken the time to think about what I was doing. Medical and housing bills were piling up in Hawaii, I couldn’t afford my apartment any longer, I couldn’t even afford my chemotherapy. The one thing that was starting to really work out for me, was bankrupting me faster than I could snap my fingers. Well, I can’t actually snap my fingers these days because of the arthritis, but you get the picture…
I flew to New Zealand like a song whistled in the wind. It had been so easy. Maybe too easy? I’d gotten a stand-by pass from my Dad, a perk from his days as a pilot, so my ticket had been less that $200. Unheard of for international travel. Despite my chronic disease, I’d packed up my entire apartment basically on my own, selling what I could, and giving away the rest. The only devastating part about leaving Hawaii was having to re-home my cats. My beautiful fur babies that had been with me since the beginning. I won’t go into details as this will turn into twenty mins of sobbing over the heartbreak of it. But they were adopted by a couple and their 12 year old girl, who swore she loved them a hundred times over. Once they were gone, there was nothing left for me in Hawaii anyways.
Well, not entirely true. I was leaving behind family and friends, a booming online business, and the best medical team a chronically ill patient could ever ask for. You may wonder why that wasn’t enough for me to stay. I can’t explain it. Sometimes you just wake up and know there is more for you somewhere else. More to see, more to do, more to experience. At 35, I am single and unmarried, I have no children (save my fur babies), and no bricks and mortar that by am attached to. With each passing day my disease progresses, breaking through the walls my medicine tries to put up to slow it down. A year ago, my doctors gave me a time frame for my lifespan. At 34, I was told how many more years I could expect to live. It was not a number that I was happy with. In fact, it spiraled me down in a deep depression, that still haunts me now and then. At my age, most people aren’t even half way through their life! So, to be told I could be close to the end was like having a brick flung at my face, narrowly dodging it, only to be hit by a freight train.
My point, if all good things must come to an end, maybe I should see more and do more before that day gets here.
But lo and behold, chemotherapy was finally starting to work. I had pep in my step, energy I’d forgotten existed, and my pain started to melt away. If only it wasn’t so ridiculously expensive to get treatment in the United States. (I’ll save my deep and profound anger at Big Pharma for another day.) I had remembered that when I lived in New Zealand when I was younger, that their public healthcare system had been top notch. So with a lot of research (including staring at my computer screen til my eyeballs felt like sandpaper), and some phone calls to family and friends in NZ, I made the decision to check it out.
As stated, I moved out of my apartment, put my beloved baking tools in storage (no way in hell was I parting with my Williams & Sonoma pie plate), packed two suitcases (who made that lame rule??), and set off for another life affirming adventure. Right? Well, jury is still out. Culture shock doesn’t even begin to describe what was waiting for me. I never thought of myself in terms of “old dog/new tricks” but, wow, I was not expecting such a big change. Or maybe it was that I had changed. I’d grown older, become resistant to change, or just not as easily accepting of the new.
Medical services are different here. So many hoops to jump through, and months of agonizing waiting that seems ridiculous. If someone was truly ill in the United States they would not have to wait very long for medical care. Maybe a month, but certainly not longer if they were in critical condition. It’s not like that here. “Everything in its own time” seems to be a popular phrase here, only its that phrase on crack. I imagine a lot of people probably go undiagnosed due to the snail pace of the public healthcare system here. It seems that it’s very important to have private insurance if you want to get anything done. Which is what I had to resort to. After many calls, my mom was able to get me an appointment with a private rheumatologist, only three weeks after my arrival. I had to pay out of pocket for that appointment, but it was necessary to get the ball rolling. Had we not, I could have been waiting upward of 4-5 months for an appointment through the public system. Without necessary medications, I could have easily been hospitalized by that point. Through the appt with the new Dr, I was able to find out I could get my chemotherapy again with a few less hoops to jump through than most. Thankfully the letters from my Hawaii medical team seemed to do the trick.
So, New Zealand wasn’t quite all I thought it to be. Not an easy fix, like my mind had hoped for. Not filled with fluffy sheep, chocolate, and the best cheese and ice cream ever. Well, not true, it does have all those things. Don’t even get me started on Orange Chocolate Chip Ice Cream. Drool…. And maybe I did make a rash decision to move here without all the facts. Or maybe I wouldn’t have found out those facts til I got here. The point is I made a decision, and so far it’s working. It’s been hard, yes. I miss the privacy of my own apartment, the comfort of being able to walk naked from your bedroom to bathroom at 3am. Having my own kitchen where I can whip up my favorite comfort foods whenever I want them. I miss sleeping with my fur babies, their cuddly bodies warming my head and feet. I miss being able to walk out of my apartment and catch a bus to a friend’s house, or to the local movie theatre for $6 Tuesdays.
But change is good right?
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.