Something has been really bugging me for the past few days, and it took me awhile to be able to put it into words here.. This time it’s not so much about what I deal with, but more about how others deal with me. Or rather, us, those who are sick in their youth.
When we were little, we were taught to always respect our elders. Its like a mantra that is ingrained in our brains since infancy. I couldn’t tell you when I first heard it, but its been repeated to me throughout my entire life. And I get it, being respectful of your elders makes sense. But how did that start? Why was it only ‘be respectful of your elders’ and not taught just to be respectful of everyone? Because now I fear, that in teaching everyone this ideal, we’ve given some a false sense of superiority. Like bad behavior is okay if its from the elderly because somehow they’ve earned it?
Also, what is the rule for the elderly then? If all us younger folk have to be respectful and gracious to those older than us, what do they have to do towards us? Anything? No? Here lies the problem. It may not seem like a problem for most, but for those of us who are under the age of 60, and are living with chronic illness, it is one. Most of the elderly that I have been in contact with since becoming ill have absolutely no regard or respect for the fact that I am sick. They either don’t believe it, or flat out ignore it. Because somehow, I couldn’t possibly be ill or disabled if I don’t carry a senior citizens card.
My first example of this is from a couple of weeks back when a friend and I were outside a local mall. We were sitting on a bench eating ice cream cones in the sun, and watched as an older couple in their 50’s were pushing a young woman in a wheel chair who looked to be in her mid-30’s. It wasn’t clear what the young woman’s disability was, but her parents (I’d assume) were helping her sit at a table of an outside cafe adjacent to our bench. The older couple looked tired, but were diligently helping their daughter whom clearly couldn’t walk. I don’t know what it was about this scene that made me smile. Maybe just a nice reminder of support from loved ones, for those of all ages with disabilities. The smile faded however when an much older woman walked past them, and decided to speak her mind on how she saw the situation. I didn’t hear everything, but I did hear the older woman tell the young woman in the wheelchair that she should be helping her parent out instead of the other way around.
I was outraged. Especially, since this was not the first time I’d seen these behaviors. In the almost five years since I was diagnosed, I have been confronted with this quite a few times. And by this, I mean older people than I mouthing off at me or other young disabled people, about how we can’t be sick/disabled and shouldn’t rely on our elders.
I’m sorry, I didn’t realize there was a rule about not being sick before having wrinkles…
Another example of this happened to me just the other day while at the bus stop outside my local grocer. As I was waiting for the bus, I watched two elderly women in their late 60’s-early 70’s push their shopping carts past the sign that forbids carts from leaving the premises. They crossed the street, went down a block, and stopped at my bus stop where they abandoned the carts outside the front door of a local clothing store. A salesperson came out and while he seemed visibly annoyed, said nothing, and proceeded to push the carts back to their home. The women stood next to me with their grocery bags, and as the bus came into view I signaled the driver to stop. Now, I was taught to respect my elders, and I always let them get on the bus first. So, as the bus stopped and opened its doors I stepped back politely. This was not necessary however, as one of the women physically pushed me back with her arm, causing me to stumble, and said “respect your elders”.
ARE YOU F*CKING KIDDING ME?
How is pushing someone you don’t even know, whom politely stepped aside for you, and then barking at them to be respectful, a gesture to be respected?? The bus driver asked if I was alright, and after picking up my dropped grocery bags, I boarded the bus and sat in the rear, as far from the rude lady as possible. They then spent the next five minutes I was on the bus, talking about how rude young people are and how they need to learn respect. This is where I draw the line.
No, I did not say something to the rude lady. I did, however go home and have a long think about how I would approach this blog.
Here’s the thing… Respect goes both ways. It shouldn’t be something we teach kids to follow just based on age. Because somewhere down the line, this ideal got warped, and not just in the eyes of youth, but in elders as well. Of course, I know these were isolated incidences. And not every single person over the age of 60 is rude to anyone younger. I have a lot of family and friends in my life whom have always been respectful of me, despite my age or disability.
But at what point did people of a certain age start thinking they were superior just for reaching that age? And at what point did the idea that a young person who is disabled, have less rights than someone who is elderly? Even back when I lived in Hawaii, and rode the bus there, I was often shamed by the elderly for using the disabled section on the bus. In their eyes I was too young to be truly sick or disabled. Like my illness didn’t matter because I hadn’t lived long enough.
Those of us whom are young and battling chronic illnesses should have the same rights as anyone else, age be damned. We shouldn’t be shamed by others for being sick, because trust us when we say, we don’t want to be. We don’t want to be using canes or wheelchairs, it embarrasses us that we have to use disabled placards on our cars, and park in special parking to get closer to an entrance. We didn’t sign up for this, and we had no idea it was coming, unlike old age. We don’t ask people to respect us, nor do we make a big deal about it in public. And we don’t teach kids to respect the ill or disabled, but we should.
Instead of teaching children to respect their elders, why not teach them to respect everyone?
And to the elderly who think I’m too young to be sick and disabled…I agree. I am too young, but that doesn’t mean I’m not. So please respect that.
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.
I know that I’ve said on many an occasion that I don’t subscribe to the Pain Olympics ideal. I will argue before anyone that this disease is not my own, and that not only do I share it with many, but there are so many other diseases out there that are worse than mine. Or if not not worse, than certainly more rapid in onset and/or life expiration. We unfortunately live in a world where diseases are as abundant as spiders, and often far more scary to deal with.
Its not a competition. No one wants to be sick. No one is going to admit they prefer the never ending pain, rather than living a healthy long life. And I know I’m starting to sound like a broken record, and I’ve probably made this point before… But if one more person tells me that someone they know has a relatively low impact disease and that I couldn’t possibly understand what its like to be sick, I WILL SCREAM.
About a week ago, I was talking with a friend and she was upset because her boyfriend is dealing with vertigo as a result of an ongoing ear infection. He had to take time off work at his construction job because of the dizziness and headaches that the infection had caused. I asked her if he’d been in to see a specialist yet, as I knew ear infections can be quite disruptive if not dealt with quickly. My friend went on in length about how stressed out her boyfriend was, and what a toll this whole thing was taking on him. I sympathized, stating I’d had an ear infection before and that they can be quite horrible to deal with, and that I was sorry he was in pain. To which she replied (to my utter shock), “Well, his is way worse, and you couldn’t understand his pain.”
Look, I’m not trying to be an asshole here, or claim that I have the worstest disease of them all. I’m trying to sympathize and just say I understand. Its not a competition on who had the worst ear infection ever! I’m sure his IS quite bad if he was experiencing vertigo so badly that he needed to take a week off work. I understand that must really suck. Losing rent money sucks.
“You couldn’t understand his pain?” Seriously?
I do more things while being in pain than you could possibly imagine. I put my body through things you probably wouldn’t think of doing, because normally you’d just stay in bed and ride out the sickness. My issue is that I can’t ‘ride out the sickness’ because it NEVER ENDS. I will be sick for the rest of my life. I will be in pain for the rest of my life. And because of my diseases, my life will almost certainly be shorter than yours.
I have woken up on a Monday morning and known without a doubt that I wouldn’t be able to leave my apartment for at least three days. I’ve woken up on an infusion day in so much unbearable pain, and known that no matter what, I would have to get up and get to the hospital for my treatment. I could be screaming on the inside at every step down the driveway, but I’d force myself, because I have to. I won’t go as far as to be petty and say I’d love to trade a one week ear infection for my life, but don’t think for a moment that I can’t understand pain.
Pain isn’t just a physical feeling anymore. Sure, I feel the pain everyday. But its so commonplace now, that it just is. I don’t know what a pain free day feels like. I haven’t had one in almost 5 years. Everyday isn’t a “pain day”. To me, its just a day. Because the pain never leaves. The fatigue never leaves. The struggle of accepting what my life is now never leaves. The fact that my life will most likely be cut short never leaves. Pain isn’t a physical feeling. It just is.
Being sick isn’t a competition. But don’t you dare belittle what I go through, or I dare you to go through it yourself.
Lately, I have been really feeling the solitude that my illness has wrought on me.
I am aware that I am emotionally not alone. I know that I have friends, and family, and a fairly large support network of doctors and medical professionals. I know that if I was having a bad fatigue day, a friend would be just a call away to come over and lend support. If I was having bad pain, and needed assistance bathing or eating, my mom would be over as soon as she could. If I was stuck in my head about the severity of my disease, I could call my therapist and we could talk through my struggles with my reality. If I just needed a friendly face, my sister is available for a video chat and emotional support. I am not alone emotionally.
One could even make the argument that I am not physically alone in my illness either. Over 1.3 million Americans are affected by Rheumatoid Arthritis, and it affects almost 1% of the worldwide population, according to the latest statistics from rheumatoidarthritis.org. As well as millions of others whom suffer from countless autoimmune diseases, chronic fatigue, and chronic pain. Yes, we all share a common link in our fight against invisible illnesses.
But no one can say they suffer from exactly what I do. No one else out there can say they are affected by the exact same diseases and illnesses that I have, in the exact same way. Because despite our common threads, we are all fighting our own battles within our bodies. No two people suffer the same way. We are as individual as every drop in the ocean, and that can be very isolating.
Over four years ago I was diagnosed with Severe Rheumatoid Arthritis from the get go. That alone was a tough struggle for me as I felt like I wasn’t given time to even get used to the searing pain. One day I just woke up and it was there, and its never left.
A year later I was forced to stop working by my employer and put on Temporary Disability Insurance, before eventually being officially “laid off”. By that point I was walking with a cane, and taking very strong opiates to calm the pain that I felt in every joint in my body. With a heavy unbelieving heart, I filed for Social Security from the Federal Government.
A year after that I was diagnosed with Severe Osteoporosis, my doctors telling me my bones tested like those of an eighty year old woman, and not of a woman of thirty-three years, my actual age at the time. Know how I found out about the Osteoporosis? By receiving a bear hug from a friend that cracked my apparently brittle ribs. Yep, that’s right….a HUG.
Within six months of the Osteoporosis diagnosis, I was sent to see two new specialists, a Cardiologist and Oncologist. After a biopsy of my esophagus, a tumor was found to be benign, but I had signs of early stage Lymphoma. I’d also started having chest pains congruent with Pericarditis, a heart condition attached to Rheumatoid Arthritis. New medications followed, as well as a mammogram, an MRI, multiple x-rays and CATscans.
Eventually, due to the inflammation in my body, and my weakened immune system, I landed in the hospital for a severe Cardiac event. It resulted in my being placed In the Intensive Heart Care ward at Queen’s Hospital. During my time there I suffered through Severe Pericarditis, including three minor heart attacks. I was thirty-four years old.
My doctors told me if I got any weaker than I was, and if they couldn’t find some medication that would work on calming my inflammation that I wouldn’t make it to my sixties. Truth be told, I was given a hopeful ten years.
For a change of climate, and pace, I made the decision to come to New Zealand, where I am a citizen, in early 2017. I thought with a different atmosphere, and medical system, that perhaps I could finally find a way to extend my life. By March of this year, no medications had worked for my diseases, and I was getting increasingly worse. My body was either intolerant of the medications available, or allergic to them. It felt like time was catching up to me. I hoped that somewhere out there beyond the ocean was the key to my mortality.
By June of 2017, I had already started a new form of chemotherapy medication for my disease that appeared to be working for me. Physically I felt less pain, and had more pep in my step. I was starting to be able top exercise again, and I had lost a lot of the steroid weight. So, when I met with my Rheumatologist after a series of tests to check my condition, I was feeling very hopeful. It was then that I was informed of my new diagnosis’ of Lung Disease and Lupus.
There are times when I can feel so very small in this world. Like a drop in the ocean. The solitude of my illness can be so overwhelming. No one will ever quite understand what I am going through, or how this feels. No one can tell me they know how hard it is to wake up sometimes knowing that your own body wants you six feet under.
I don’t quite understand how these things work, but I do know that it pretty amazing that I have not completely fallen apart by now. There are days where I can wake up and not be fully assaulted with the gravity of my situation. I can have a shower, get dressed, and face the day, rain or shine, with a smile on my face. I can see my mom, or friends, or just take a walk and feel happiness in my heart.
Then there are times where I look in the mirror and wonder when my last day will be. I wonder what awful thing my body is doing today to destroy itself. I can lay in bed for hours staring at the ceiling in silence. No tears, no anger. I contemplate my mortality and the awful unfairness of my life, like I’m watching an old movie with no sound. Days like that I lay there and contemplate my life as if I were a drop in the ocean. I wonder what it will feel like when I am swept away by the current and I have let go. Today is not that day.
But it will come. Sooner than I would like.
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?
Blackness. Or maybe it was all a bright white. Maybe there was no color at all. Just silence. Maybe that quiet seemed like it would never end.
All I could concentrate on with pain. It seemed like pain was all around me, infiltrating every bone in my body, every piece of flesh. It was so dark and solemn, everything seemed so far away and out of my reach, and yet it was deafening in the darkness.
Where was this place that I had been brought to? Had I closed my eyes and found the place that I would breathe my last breath? Was this the gate that I was meant to cross? How did I even get here? How did any of us get here? Was I meant to be here at all?
Noise. Shouting, machines whirring, everything seemed so loud. It was too loud. The pain hurt. The noise hurt. I just wanted everything to stop. I was ready for it all to stop…
Vision blurred. I saw people running around me, they’re fuzzy outlines making no sense to me as my eyes opened and closed. The pain. The pain was deafening. I just wanted it to stop. I was ready for it to stop. I just wanted it to stop.
I close my eyes, and left them closed for a while. I opened them again, blurred lines still running about… I closed them. Open. Close. They moved with the time of the beeping machines around me, alerting people to my heart rate as it slowed, slowed, slowed…
Finally, the pain overwhelmed me all at once. My breath stopped, my arms went limp, my body had decided… My eyes closed and all I saw was white. It was everywhere. And I was everywhere. I just wanted everything to stop, and it did. But only for a moment.
Only for a moment.
On this past New Year’s Eve an old friend from college made a generous donation to my Life Fund of $100. After thanking her profusely she told me she made the donation in a way of thanks to me. Confused, I asked why on earth she felt the need to thank me when she was the one who had made a donation. Her answer has attributed to many hours of contemplation and wonderment, that of which I’m sharing today.
Over the past few years I’ve gotten used to to people telling me that my illness and unique situation has made them see the ‘good in life’. Which is understandable, I guess. It’s human nature to feel thankful for what we have when seeing the suffering or hardships of others. Personally, I always feel grateful for having a roof over my head and food on the table when I cross paths with a homeless person. Or enjoying all the colors of the world when I see someone using a cane for blindness. Before I was ill I felt grateful for my healthy disposition when I saw someone less fortunate than myself.
Even now, I feel like I have a lot more sympathy for people like me, than I did in the people. To be honest, I used to be really judgmental of hugely fat and or obese people I saw on the street or bus. I always jumped right to the conclusion that their weight must be due to lack of control with food and binge eating. But now I know that many people can’t help their weight if it’s attributed to a medical reason. They could have diabetes or gained steroid weight like I had. There are many medical issues that can contribute to excessive weight gain.
Now, obviously not everyone who is overweight has a medical problem. Yes, there clearly are many people who eat bad food, and a lot of it. Especially in Hawaii. The point is I’m not mean in my head when I pass someone by who’s fighting their weight like I am. Though I still have no sympathy for those people you see in Wal-Mart using the motorized carts while stuffing their face with a giant bag of Lays. I mean come on, you’re just asking for someone to discreetly snap pics of you on their iPhones and upload you to People of Walmart at that point. Have some dignity.
My point, before my mini-rant, is that being ill has broadened my mind. I too see the finer things in life, and appreciate the little things a lot more now. Like my friend Liz, who told me that normally in the past when she’s had to work late and miss spending time with her husband she has been bitter. But upon thinking about me and my struggles she decided that instead of being upset, she would be grateful. Grateful to have a great job with fair employers that treat her well. Grateful to have wonderful husband who loves and adores her. Grateful to be happy and healthy. So on that night, instead of complaining about working late, she decided to be happy that she got paid double for her excellent work ethic and in turn made a donation to my Life Fund as a way of thanks, for being her “unofficial life coach”. The whole thing made me tear up a bit to be honest.
Besides accepting such a huge compliment as well as a lovely donation, the whole ordeal has really made me think. Mostly about how our life experiences change us. My disease, while being a big bummer for me, seems to help a lot of my friends and family gain a lot of healthy perspective. And that in turn makes me happy that I can contribute in some way to help others. Just like how this blog has helped others dealing with RA or other chronic illnesses see other perspectives than their own.
For two years now I’ve been seeing a Pain Management Psychologist, (who is basically a therapist that knows extensive information about medications and how people deal with their pain). He has helped me immensely, not only with my pain, but also how I perceive my disease and the people around me. Each week we discuss mortality, the progression of my disease, the people in my life, and how I’m living day to day. He has helped me find hobbies while not working, reminded me to keep active, and kept me grounded. In a way he has been a life coach.
But now I see that while people can help us on our journey, we also need to learn to help ourselves. And I actually think we already are. In everything we do. Sure others can motivate us in the right direction, but we are the ones making the decisions to change. I may have motivated Liz to feel grateful for her healthy life, but it is she who made the decision to be a supportive friend, and a loving wife. My therapist may motivate me to see the positive parts of my life, but I am the one who chooses to live with the positivity moving forward.
So at the end of the day, while we all have people in our life that drive us to do good, and to be good… We are the ones that choose to follow through.
We are our own life coaches.
And we are winning.
Today my therapist told me that it’s important to address my fears. I guess there is a part of me that’s been hiding from them and from the reality of my disease. So here they are in list form so I can start working on them…
**My own mortality
Each week I am faced with a new diagnosis, often scarier than the last. Two short years ago I only had Rheumatoid Arthritis, and now it’s super aggressive, and I also have Lymphoma, Osteoporosis, possibly Cervical Cancer, and a soon to be increased risk of Bone Cancer.
This isn’t just me looking to the future for remission anymore. With the increasing fractures brought on by day to day activities, the worsening symptoms and side effects, it’s been made clear to me that I am not getting better and that I should be aware of all possible outcomes, including death.
33. I’m 33 and I have to think about the chances of my life ending in the next decade, and not five to six.
Its becoming more and more of an increasing reality with each passing day. I haven’t raised enough to move out and I need to find a new place to live very very soon. I’ve asked, even begged, family members to help and have received very little in return. I always thought that if my circumstances became dire, somehow someone would step up and help me. It’s incredibly horrifying and scary to realize that I was wrong. Blood is not thicker than water as it turns out.
I can only be eternally grateful that friends and even friends of friends have stepped up and made amazing contributions to my health and wellbeing. To those who have supported me selflessly… Thank you.
You’d think I’d be used to the pain by now. But I’m not. I thought I had experienced the worst that my body could deliver in the form of inflamed joint pain… Then my ribs cracked. I felt every bump, every pothole, and every imperfection on Hawaii’s roads today as if they were a tiny Armageddon inside my body. Each time the car hit a crack in the road my ribs felt like they were splitting slowly one by one. Each time we came to a stop it was as if I had all the air sucked from my lungs, an elephant placed on my chest, and a drill sergeant yelling at me, demanding I take in a deep breath.
Every day I feel more pain than the last. A new nightmare setting up shop inside a body that welcomes it with open arms.
**Loss of self
All these crazy medications on the market these days have some of the worst side effects you can imagine. And the insanity of it all is that I started with ONE DISEASE. Rheumatoid Arthritis. But to fix the RA and manage the pain, I had to take steroids, biologics, and opiates. These three types of meds can cause a myriad of health problems including exhaustion, pain, weight gain, cancers, loss of Bone density, dizziness, compromised immune system, and more. I received ALL of these complications including two types of cancer. So instead of ONE problem, I now had several. Two years later I have now ALSO developed Osteoporosis. And the only good medications on the market for really helping with that can cause you to become half of yourself. To function on this medication I will have to have a pain medication pump surgically implanted in my body, take anti-depression and anti-anxiety medications, and basically hermit myself in my home as to not accidentally break my body.
Yes, this is definitely the life I’ve always dreamt of…
But you know, I’m lucky they tell me. Lucky to be alive.
Alive… Is that what this looks like?
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