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.
Inigo Montoya shared this line with us in the cult classic The Princess Bride, one of my favorite and also least favorite movies. You may wonder how someone can love and hate a movie at the same time, but it’s not much different than how we love and hate other parts of our lives… I love tomato soup but hate marinara sauce. I love the beach but hate the sand.
For me, this line is indicative of how I feel when people offer support or help, but don’t follow through on the promise. It’s in fact one of my biggest pet peeves. The best memory I have of this annoying occurrence is through the actions of a certain ex-boyfriend of mine. He would constantly make promises to me, and then never follow through. For example, on one Valentine’s Day, he told me that my gift was that he wanted to take me to this old black & white theatre in town that played old movies, kind of like an old fashioned romantic date night. I was overjoyed by this idea, reveling in the thought of how romantic my man was. I told all my friends about the lovely date he proposed, finding such satisfaction in the idea of my “gift”. But then time passed, and he never initiated the actual date he had told me about. This was when I first realized that he was one of those people that thought that stating the idea/plan/date was enough, and that initiation of said idea didn’t need to happen, so long as he felt generous enough for just offering. God, that got old real quick…
I actually use this irritating ploy as a way of gauging the authenticity of people I come across now. I no longer accept offers at face value, concluding that an offer isn’t real until followed through on. Alas, since falling ill four years ago, there is no offer made more than the promise of support. And this is where I want to invoke Inigo Montoya every time.
What exactly is your biggest pet peeve, you may ask? Hearing this:
“Please don’t ever hesitate to call me if you need help.”
“I could help drive you to the doctors office if you ever need.”
“Call me if you need help picking up groceries or running errands.”
There are more versions of these statements, but I think you get the picture. But they are always, always followed by “It’s no problem at all, I’m just glad I can help.”
Now I know what you’re thinking, “This girl is ungrateful. These people are just trying to help her, and she’s complaining.” Oh, if only that were true, but if it were, I wouldn’t be regaling you with this story now would I?
In the early days of my disease, I was always so grateful to hear these promises of support. They made me feel like I wasn’t alone, that I had so many people that I could count on. That is, until I attempted to collect on the offers…
Now at first, I thought I must always be catching people at the wrong time. That of course must have been the reason they turned me away. So I started to ask for help here and there when I thought the time was more convenient. But even then, my request to take people up on their initial offers of support, were often met with short responses in clipped agitated tones. Or even worse, comments dripping in disdain that sounded like they were answering a smelly homeless person, asking for an extra bucks change, as opposed to me, a friend they’d known for quite some time.
Like I said, it took me awhile…
Eventually I figured it out, these people were just like my ex-boyfriend, and they fed hungrily on the feeling of being a benefactor from just the offering of help. For them, the offer alone was enough to make them feel like they had done a good deed. They’d offered someone in need their help, and that in turn made them feel generous and kind. Hurtling their karma in the right direction, and allowing them to feel philanthropic. But if the person in question turned around to collect on that offer, instantly they would feel annoyed and pressured, irritated that they would have to now make time to do something that they themselves offered in the first place. This annoyance that they felt entitled to feel, could then allow them to take a step back from the friendship. They could now tell themselves that they had been generous, and that it was being taken advantage of. While in reality, they hadn’t done anything but make themselves appear petty and untrustworthy.
Now I’m not saying all people are like this. I do have wonderfully supportive people in my life. People who have gone above and beyond to help me, to support me, to love me. I am eternally grateful for their kindness. Although, I do find it amusing that the most generous people are often not whom you might normally expect. But that’s okay. Their generosity and support make me realise more now than ever, that sometimes the family that chooses you, the ones that come from all walks of life, are the ones that make the most impact in yours.
But on the path of never ending life lessons, don’t ever assume “I can” means “I will”.
If I’m in pain all the time, you may ask is it even worth it, to do the things that I do.
If it’s so painful to run errands, pick up your meds, and go grocery shopping, why do you do it?
If you’re in so much pain, then why get dressed and put make up on, and go out into the world, why not just stay home so that you can sleep and sleep?
If the sickness is as bad as you say, then why bother getting up every day, why don’t you just stay in bed?
If you’re in as much pain as you say, why are you not in a hospital, why aren’t people like you talking about how much pain they are in, and why have we only heard about it from you?
If your disease causes as much weight gain as you say, how come we haven’t seen in it others?
If is not the question you should be asking.
Because IF you truly listened, watched, and heard, you would know the answers to your questions.
That if I didn’t force myself out of bed and do the things I do, I’d become a prisoner inside my body. That if I stayed in bed I would get sicker and sicker as hope would be lost. That I’ve been to the hospital several times already, don’t you remember when I told you? That there are thousands of people around you every day that suffer from sickness, pain, and weight gain due to illness, but that all you see is fat, and so you judge without question.
If you really wanted to help instead of judging, you would look at me with eyes wide open, and see my reality for what it is, instead of judging me for something you refuse to understand.
It’s nearing the end of 2016, and it seems like people are dropping like flies. Carrie Fisher died this week. Princess Leia, a superhero hero to one and all, one of the originals. She empowered women and girls alike, showing that we don’t need to be “saved”, and that we can have kickass adventures in life on our own. And just days later her mother, Debbie Reynolds, followed her demise. Just last week pop icon, George Michael, died as well. This was also the year that took Prince.
Superheroes these people were. But the real life kind. George Michael gave millions of his earnings to the needy. Prince donated time and money to foundations as well. You could say they all lived good and meaningful lives. Their deaths will all be remembered, their lives immortalized in history and our minds.
That’s what we do with famous people. We build them up to be larger than life.
I will always remember this poster I saw on a directory stand at a mall once… It’s said “You can probably name every single American Idol winner, but do you known the names of all of your child’s teachers?”
That’s so true isn’t it? We know totally useless information about famous people, probably more than their own families or themselves. Yet we don’t know much about each other, r important people in our lives.
I guess my point is that we dwell on things that don’t really matter. Things that aren’t important or necessary or helpful to our growth and intelligence. And while focusing on nonsense we forget about what’s really important, or whom.
You know what came to my mind when I saw that Princess Leia died? ‘Millions will remember her death, but I wonder how many would pay attention to mine?’
I’ve tried to be as honest as I can to friends and family about my disease. I try to explain my symptoms, or what the doctors say, or what we know. But either it goes in one ear and out the other, people don’t really believe it to be true, or its too intense to comprehend at all.
Mom knows. Or at least I think she has a pretty good grasp of the reality of the situation. Even more so since my therapist sat her down and really made her see. I can’t imagine what must have gone through her head that day. Was it like everyone else I tell? Incomprehension? Sudden, gripping fear? Denial?
It’s just like the Christmas season and Santa Claus… It’s all a myth, not really real right? Or the monster under my bed isn’t really there if I close my eyes real tight and pretend it’s not there… They’ll count to 1, 2, 3, and the boogie man is gone and all is right in the world again. Rheumatoid Disease doesn’t work that way…
You can’t pretend it doesn’t exist. And it won’t go away if you act like it’s not there. It will creep on you slowly, getting worse, and worse. Until one day you’ll look in the mirror and a poisoned and pale stranger looks back at you. Her hand are deformed, her back is hunched over, water and steroid weight clinging to her frame. She is not the beautiful woman who use to live in the mirror, and her weight won’t go away with diet and exercise and a can-do attitude.
Tonight Mom called me crying. She was sad for Debbie Reynolds. That she had to watch her daughter die before her, and that maybe the heartbreak of it, took her life as well. I think it was the first time my mom truly grasped the reality that she could outlive me. I’ve known for some time now. I’ve dealt with the depression of it, the sting of reality, the hard lump in my throat that I cannot swallow away. No parent should have to bury their child, adult or small. But that could be our reality.
I think the biggest issue patients face with Rheumatoid Disease is that people don’t understand how serious it can be. Everyone knows the word “cancer”, and they associate that with the deadliest kind of illness. But cancer isn’t the only thing that kills. And some autoimmune diseases are worse and kill quicker than cancer. Bet you didn’t know that did ya? Just like the Top 10 Billboard Artists, you can name them, but not diseases that kill.
Well here I am to inform you… Cancer isn’t the only thing that kills. And most of you didn’t even realize how severe my disease was until I started undergoing chemotherapy, which yes, helps other ailments besides cancer. My hair is falling out, I throw up all day long, I look and feel awful. Yes, my disease is as bad as some cancers.
What you don’t know, or don’t want to know, is that I’m on borrowed time. I’ve tried to tell you how sick I am. I’ve asked you to understand. I’ve explained again and again. I post articles, I do research. I ask you to believe. But the Kardashians are more entertaining than a misunderstood disease. Or the latest Star Wars movie, or a new car, or celebrity deaths in the news.
It’s hard to watch anyone die so young, especially one of our female superheroes. I’m not famous, but mortality is the same for me as I’m sure it was for Princess Leia. No one wants to die young. Im not a superhero, but it’s scary all the same. The difference is I won’t be mourned by millions. I only hope that if I do go early, my body would shed light on this awful disease that is intent on stealing my joy. That I could at least serve a purpose for those who come after me, and that a cure will one day be found.
You may think this is a bit morbid. But I guarantee you, it’s only the reality I’ve been trying to share. I wish people would see my disease for what it truly is. I wish people would listen when I explain how very ill I am. I wish they would believe my doctors when they say that I won’t live as long as my friends. I wish people could truly see and understand. And really listen and try to understand as much as they would pay attention to their fave tv series or movie star.
I may not be a superhero, but my health and body are not less important either. I’m trying to stay afloat in a world where I’m drowning in my disease. All I want is for others to acknowledge that I am a person too. A person dying from an incurable disease. I just want to know I have the love and support and understanding of others.
It’s a lonely reality when you know how sick you are, but it’s not as important as the latest blockbuster, or latest Prada bag, or the car you’ve always wanted. If you it’s a hard reality knowing exactly where you are on a priority list, and half the word sits above you.
I’m sick. Can I get an acknowledgement please?
I’d been sitting in the blue squishy armchair for what felt like an hour, though more likely it had only been fifteen minutes. There are only four of those armchairs, and they are coveted, being the only actual comfortable chairs in my pain management clinic’s waiting room. The rest of the chairs in the room are made of black metal and hard gray cushioning, and no matter what length of time you sit in them, be it an hour or only five minutes, you will always always get up in pain and discomfort.
Today the chairs were almost empty, and I got my pick of all four, choosing the largest and squishiest on the far right near the door. It was late in the afternoon, much later than I’m usually there, and most of the patients had already been seen. I was mentally kicking myself for agreeing to an appointment that late, usually at that time I’d have been home napping. God, I wish I was napping.
Today’s outing was a mistake, I knew this now. I knew it when I was on the crowded bus making my way here. I knew it while traversing the five blocks from the bus stop to the office building complex, especially once it started to rain. I knew it once the wind snapped back my once sturdy umbrella, rendering it broken and useless. See, the problem was that I’ve been sick for days. No, not my usual sickness of arthritis pain and fatigue, though it was included. But actual sickness, like a cold, or in my case a sore throat with fever. I’d spent the whole weekend in bed, barely making it up to use the bathroom and make cups or tea, I couldn’t even remember when I’d eaten last. I was feeling so shitty yesterday that I’d had to cancel/reschedule three appointments, because I physically didn’t have enough energy to put clothes on, let alone catch the bus downtown. Usually, I have help from my caretaker on days like yesterday… But a few weeks ago I’d insisted that they take a vacation from looking after me, assuring them that I’d be fine. I mean what could go wrong in one week right?
…..sometimes I wonder if I jinx myself when bargaining with fate like that.
On a normal day, I would have known better than to leave my apartment feeling so bad. But today was a special day, not one that I could skip. See, today was when I got my prescription for my pain management medications. Since they are severely controlled substances, you can only get a 30 day prescription at a time. My clock had been ticking down, and I have only two days worth of medication left in my medicine cabinet. I could be on my deathbed and I wouldn’t miss that appointment. It’s as important as paying rent on time.
So today, a day where I’d woken up feeling like I was flattened by a steamroller in my sleep, I left my house to travel thirty-five minutes downtown and sit in that room, in the blue armchair, waiting. Dripping wet from getting caught in the rain with a now broken umbrella, waiting. Shivering cold in the office’s icy air conditioning, waiting.
Ever heard of Spoon Theory? It’s a theory that was brought to life by a woman named Christine Miserandino, whom has lupus. Christine tells a story to her friend, explaining what life is like living with lupus, but it really could be an explanation for a myriad of chronic diseases, including my Rheumatoid Disease. To truly understand what we go through, give it a read here. It’s the best description of what I go through on a day to day basis and you’ll need it to understand the rest of my writing.
Any day that I wake up sick, or in the middle of an active flare, or exhausted from a restless sleep, is a day I wake up on borrowed time. It’s waking up with half the spoons of a regular day. Though for me, there really is no “regular” day, because every day I wake up I’m in some measure of pain. Today, was an especially bad day. By the time I’d reached the pain management clinic offices, I didn’t have many spoons left, maybe three, four if I got lucky. In fact, I was pretty worried about making it home at all.
After what seemed like an extraordinary amount of time, I was finally called in to my doctors office. I’d assumed today would be like any other day, just the regular picking up of my script, ten to fifteen minutes top. Alas, it was not to be. I was met by a new attending nurse, whom told me I’d have to give a urine sample before getting my prescription. This was new. I’d never been asked to do that in the three years I’d attended this office. To be honest, I was fairly insulted. This test was to insure I’d been taking my pain medications, and not doing something more sinister like selling them on the streets. Did they really think after all these years of my being on intense pain medications, medications that not only kept me mobile but also alive, that I’d just throw it away for some cash? Ugh…
By the time I left the clinic it was an hour later than I’d expected. It was also unfortunately still raining. It was going to be dark in just under an hour, and I was exasperated because I still needed to stop by my local pharmacy and pick up another prescription that I was already out of. Had I not been so sick over the weekend I would have picked it up already, but I’d been in too much pain to leave the house. Unfortunately making it so that I had to pick it up today after my appointment. This could have already been taken care of, and I could have been on my way home by now had that stupid new nurse not made me take that ridiculous urine test.
It took what little energy I had left to walk those five blocks back to the bus stop. The rain slowed me down, my broken umbrella doing little to shield me from the wet weather. I was waiting at the crosswalk when my bus rolled past. No no no. No. I hurried across the street, trying to be careful not to slip ( I did not need to deal with a broken bone of all things right now), and put up my hand trying to signal the bus not to leave. He was right there. But he left. When I was not two feet from the back of the bus, where I’m sure he could see me in his rearview. Thanks bus driver. Thanks.
By the time the next bus to my suburb came, it was dark and still raining.
Pneumonia. I was surely going to get pneumonia.
I could hear my moms voice in my head telling me to catch an Uber or Lyft, and man would I have loved to, had I enough money in my bank account to pay for it. But tomorrow was rent day. I didn’t even have enough money to pay my gas or electric, or my internet and phone. Hell, I didn’t even have enough money to supplement my $90 monthly food stamp allowance. I’d just gone two days without gas, which meant no hot water and no ability to cook food. Ride shares were a luxury I couldn’t afford.
The bus was packed, it being rush hour and all, and the floors were slick from the rain. I had to stand for the first ten minutes, before finally securing a seat in the sideways facing disability section in front. I don’t usually like sitting there, as riding sideways makes me nauseated, but beggars can’t be choosers. I was beyond exhausted. I maybe had one to two spoons left, and if I didn’t really need to pick up that prescription I would have caught that bus right to my street. But I knew I couldn’t live without my medicine. Waking up without it would make things so terribly worse.
Once at my destination I bought a bottle of water, drinking half of it down before continuing to the pharmacy counter, hoping to alleviate the nausea I inevitably got from the bus ride.The liquid revitalized me just enough to stand in the long line that had accumulated for those “picking up”. I paid for my prescriptions, dropped off the new ones, and headed back to the bus stop, elated that my day was so close to the end. I allowed myself to fantasize about a hot shower and a cup of Irish breakfast tea.
As I watched my bus drive past me as I turned the corner, an offer of a million dollars couldn’t have stopped the tears from falling. I was so tired. So this is what being stuck out in the world without spoons felt like… I don’t even remember sitting down, but I must have. I wearily pulled out my phone, looked at the bus app, and was relieved to see that three buses were scheduled to arrive in the next fifteen minutes. I could wait fifteen minutes. And then I would be home, under that hot shower, and then snuggled up in bed with my cats and that hot cup of tea. It sounded like heaven at this point.
I waited. And I waited. After thirty minutes no tears fell. I don’t think I had the energy left for any type of emotion. I stared down the dark street, knowing that all the way down there, six blocks away, was my warm and dry apartment. I don’t know if I borrowed spoons from tomorrow, or just willed myself with the raw human need to not die on that bench, but I got up and started to put one foot in front of the other.
I don’t know how long it took me to walk home from that bus stop. On a good day, I could traverse those six blocks in about ten mins. But today was not a good day. I don’t even remember the actual walking. Just one foot in front of the other. My wet shoes making squishing noises with each step; I know at some point my phone beeped. It was a text from my mom, telling me she had a cold. I responded that I was walking, and put my phone away.
The next thing I remember was sitting on my bed, wrapped in a towel, still warm from the shower. My hot water kettle chimed that it was ready. My phone was beeping. My mom was telling me how sick she had felt all day. All I can remember is feeling so profoundly jealous of the people in the world who have someone to look after them. Someone to tuck them into warm beds, bring them cups of hot tea, and medicine.
I looked back on today, realizing my new reality, and cringed. A reality I had actually agreed to.
“Go and live your life”, I’d said.
“I’ll be fine on my own, I’m sure.”
In fact I was so sure my disease couldn’t get any worse. I’d seen it all this year. Hospitalized for reoccurring Pericarditis, multiple ER trips for violent pain flares, chemotherapy, lymphoma, menopause, and now the new sleep apnea diagnosis… Surely it wasn’t going to get worse, right? Why do I always underestimate my disease? Why?
And then in the first week I attempt to do this on my own, to show everyone who’s been pushing from the beginning, saying “Why can’t she look after herself?” or “She’s an adult, why does she need help?” or “She’ll be fine on her own”
Then…. This happens.
Have I shown you the truth yet? Are you ready to accept that my disease isn’t going away? Are you finally ready to open your eyes and see that not only will this affect me for life, but that it will just get worse and worse? That I need support? And not from some nurse that checks in with a daily phone call, but someone who physically checks in on me, to make sure I wake up every day. To make sure that days like today never happen again. Someone who helps me to my doctors offices, or insures I get my prescriptions filled on time, and to see that I’m eating something when my flares keep me bedridden for days on end. Someone who helps me keep a roof over my head, and food in my fridge, and my gas from being turned off.
Who is that person for those of us who have no husbands or wives, no long-term partners who can watch over us? Who is that person when a family member denies your disease exists? Who is that person when the one person that does look after you has a partner who doesn’t understand this, nor do they want to?
Who is that person when you’re facing being alone indefinitely?
Who am I going to turn to the next time I run out of spoons and I’m not just a few blocks from home?
Who am I going to turn to?
Who is left when the spoons run out?
For as long as I can remember, I’ve thought I was overweight. Literally, even as a child, I was aware that my tummy protruded just a little, that I had a round face, and that I didn’t have the same body as some of my friends. Of course, when you’re nine years old, things like weight don’t really ‘measure up’ in your world. As a nine year old, my day to day thoughts were mostly consumed by whether or not I was going to be able to collect the entire set of Looney Tunes mugs from KFC, or which of my friends my mom would let me have a slumber party with on the weekend. As a rule, nine year olds, or really any aged child for that matter, could care less about their weight. It doesn’t even register as a blip on the radar. The only way would be if someone were to tell you, to explain to you why it would even matter.
For me, this person was my father. For as long as I have memories of him, those memories included him telling me I was overweight. Memories of us hiking when I was a kid, pointing out the reason I was tired and lightheaded was because I didn’t exercise enough, and that had to be the reason I needed to take breaks. Or telling me not to eat the bread that was set on the table at restaurants, because I already had a “belly”. Comments and situations like these were commonplace to my youth, even prompting me to beg my mom to let me stay home with her, instead of going to my dad’s every other weekend, per the divorce decree. When I was thirteen, my father took me aside and asked me if I was pregnant, because how else could I explain my fat stomach? This, as well as every other weight related comment, infuriated my mother, and bewildered me. Because the truth was, I was quite the gangly child.
Until I was ten years old, my mom and I lived in Makiki Heights, also known as Tantalus, an extinct cinder cone on the southern end of the Ko’olau Range on Oahu. Tantalus, was and still is a lush peak with thick rainforest, full of hiking trails, and dotted with older homes as well as more modern upscale estates. We rented a small apartment on the ground floor of a converted farm house, that sat on a large lot that was shared with the house of the owners. Growing up there was like living in my own personal Wonderland. Our garden/yard stretched far down the hill, and my neighbors yards were easily accessible if you didn’t mind squeezing through the wire fence. I was the epitome of a tomboy, and spent a lot of my free time running around, playing hide and seek, and getting into mischief with the three other kids I had as neighbors. So, to be called “fat” or “lazy” was incomprehensible to me.
I’d like to say as I grew older I started to fill out and lose the skinny, gangly look I had going on. But, alas, I was to maintain the “stringbean” look well into my teens. The comments never stopped either, so despite my slim figure, I always thought I was overweight. Because we tend to believe what people tell us. Not just our parents, but society as well. I grew up reading Cosmo Girl and Seventeen, just like every other hormonal teenaged girl in America. Those magazines told us what we should look like, what we should wear, how we should talk and act…and we believed every word. Why wouldn’t we? They printed it right? And all the celebrities and models were all bone thin and gorgeous, living the dream… Perfect house, perfect car, perfect wardrobe, perfect guy. The American Dream. Or at least what it looked like from a fifteen year olds point of view. And I was raised under the ideal of “Size Matters”. “You won’t get anything good in life if you’re fat.” “Beautiful people are winners.”
The funny thing is though, that once I hit eighteen, I grew out of that bullshit. I don’t know exactly when it was that I stopped buying into the “skinny” hype. All I do know is that at some point I turned a corner, and I just didn’t care anymore. Could be around the time that I started to really enjoy my body. I grew breasts, and small as they were, they got the amount of attention I needed. My “stringbean” body went from straight up and down, to voluptuous curves. And somewhere in there, the shyness of my youth (when it came to boys), melted away. Suddenly, not only did I know I was attractive, I relished it. And while, the comments never stopped, I no longer needed validation from a parental figure to feel good about myself. If having wide hips and a round face meant that I was fat, well then, I guess size really didn’t matter, right?
God I hate it when he’s right…
Fast forward seventeen years.
Here I am at thirty five years old. I’ve lived a very full life for my years. I’ve visited over 25 countries, and lived in at least 3. I’ve had a serious long-term relationship, attended university, won the lottery, and jumped out of an airplane (on purpose of course). And last but not least, I’ve been diagnosed with and suffer from a chronic and debilitating disease. A disease, that in the three and a half years since I was diagnosed, changed my body and mind in ways that I didn’t think was possible.
Three and a half years of being on the steroid that I once naively named “the arthritis cure”, having no idea the long term effects that it would wreak on my body. Turning my once beloved curves and perky breasts, into the prison of fat that I have been forced to become accustomed to. My reality is the woman that looks back at me in the mirror now. This unrecognizable woman, with her Cushingoid “Moon Face”, sunken in eyes rimmed with dark circles, and a body that looks like she’s carrying triplets.
I used to feel beautiful. I used to adore my looks. I was once a confident woman who thought she could have whatever she wanted, if she really wanted it. I was a boss. I knew exactly where my place was in the world. I was winning.
This is where I hate how he was right. How society was right. I hate that I have to admit that. It pains me to say aloud that “Size Does Matter”. Because despite now having an invisible disease, nothing about me has physically changed, except for my weight. And yet I feel as if I’ve lost everything…
Since significantly gaining weight, I’ve lost the majority of my friends. Yes, I know you’re going to say “Well, they weren’t very good friends if they left you in your time of need, were they?” And that’s true, but it doesn’t mean that it doesn’t still hurt. Most of them just slowly drifted away, becoming too busy, or too occupied with their own lives. I know this can’t all be blamed on appearances. A lot of this can also be attributed to just not wanting to be attached to the stigma of someone who is sick. But it’s hard not to draw the parallel.
Then there’s my dating life… Since college, I have never gone longer than four months without a companion in my life. I’ve always had dates, or boyfriends, or “friends With benefits” or something. I’m really not as codependent as I sound, I promise. I’ve just always enjoyed having a partner in crime, someone to share my life experiences with. And I’m sorry, but there is NO WAY IN HELL that my sixteen month drought doesn’t have to do with my increasing size!
Size Does Matter!
No matter that I am a strong and capable woman, or that I am an educated, well read intellectual. That I have traveled more extensively than most of my high school graduating class, and visited more countries than I can remember the names of. No matter that despite having a chronic illness that has caused me to have heart attacks, and through medications caused Osteoporosis and Lymphoma, I am still here standing tall. My disease has not defeated me. But maybe the stigma of my new size has.
I don’t feel attractive anymore. I can’t honestly say “I’m beautiful”, because I no longer believe it. I feel fat. I see pictures of myself and I cringe. It literally looks like I’m pregnant with an entire litter of puppies. And the smiles from strangers have stopped. No longer does the cute waiter at the local diner give me free refills. I’m not the cute girl I used to be. And I try so hard to not let my looks define me as a person. But it’s hard to leave behind almost two decades of another way of life. This is not the woman I want to concede to. But as long as I’m on this drug, my doctors say it’s near impossible to lose the weight. And I can’t get off the only drug that works. The only one that keeps me moving, mobile, alive.My reality is that this steroid is saving me. But what have I lost in return?
What have I lost in a world obsessed with the fact that Size Does Matter?