I still don’t understand

I grew up with Disney, and fairytales, and romance. I grew up believing one day my prince would come and sweep me off my feet and save the day.

In my twenties I quickly learned how silly these concepts were. That Disney wasn’t real, that fairytales were rare, and that there was no prince waiting on a white horse.

In my early thirties, I woke up one day with Severe Rheumatoid Arthritis. In the six years that have passed since then I’ve learned that my body wasn’t made for romance, fairytales, and dreams come true.

I don’t know what the meaning of life is, or why we are here, and what we as humans are meant to do. But I’ve come to realize that I my body and mind were meant to endure colossal amounts of pain.

Pain from the diseases in my body that won’t quit multiplying. Pain from cancers that won’t give up. Pain from being destroyed from inside out. And the pain from being constantly let down by those who don’t stay.

If my body was meant to endure such stress and pain, why give me a heart and mind that is so vulnerable to the human condition?

Why let me know sadness and sorrow, heartache and loss? Was the physical endurance not enough for one person to take? Must I feel the destruction of everything inside on such a monumental level?

I don’t understand why I was made to experience so much pain. I don’t understand. I don’t understand.

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little by little

I was looking through #quotestoliveby on Instagram tonight and came across three small words.

“little by little”

I’m sure that this is probably a mantra for many, as it could encompass so many aspects of life. It might have been written to encourage people to strive for their goals, to not give up. Maybe to save their pennies, and go for that dream vacation. Or keep chipping away at their education, until they’ve succeeded in their dreams.

I used to love seeing quotes like this. I’d save them to my quotes board on Pinterest. I even contemplated getting some of them as tattoos, so powerful a message they were, I wanted them as a permanent reminder.

But tonight I see these words and they don’t speak to me as they once might have. I see “little by little” as a reminder of my mortality. I see it as my disease chipping away slowly at my body from the inside out.

Little by little my bones grow brittle and break more often.

Little by little my fatigue consumes me to where I wonder if I can get out of bed again.

Little by little my hair falls to the floor.

Little by little the drugs fail and I wonder what will be next if I’ve already tried everything.

A lot of people have commented on how strong I am about my disease, how in control I seem, how optimistic. They don’t realise that this is the mask I must wear, my uniform. Because if I share how scary it is to not know when the end is, then I’m being “dramatic” or “looking for attention”. No one wants to hear when the chronically ill are suffering. It’s a nuisance, something that should be kept to themselves. So we do. We keep it in. We become experts at the “I’m ok”.

But there are days like today, moments where the gravity of everything collapses our resolve. It might be a song on the radio, or a comment someone made at dinner, or that moment when we look in the mirror while washing our hands. Everything we hide from everyone, including ourselves, shatters. We remember what we are going through and how bad it is.

So tonight, when I read those three words, I remembered that little by little my body is dying. And that just sucks.

Oh, is my hair loss from chemotherapy inconveniencing you?

For those of us who take forms of chemotherapy for our disease, it’s a pretty big deal.

It’s bad enough that we get flak from the cancer community for using the term “chemotherapy” when explaining our biologics, when that’s what it actually is! I get that some of us aren’t on the high doses that cancer patients are on, BUT IT IS STILL CHEMO AND IT STILL HITS US HARD. It’s not a competition to see who’s on the worst drug or dosage.

I’ve been on biologic infusions for a couple years now. That means that I willingly consent to toxic chemicals being pumped into my body in the hopes that it makes me well. Sometimes, they do. I have unfortunately been on the other end of that a few times. The last time my body didn’t like chemo, the backlash consisted of multiple heart attacks and an eight day stint in the ICU.

It’s not a competition, so don’t tell me the chemo I take doesn’t have a toll. I get nauseated and vomit for hours. My body turns to lead and I have to sleep like the dead for up to 20 hours sometimes, just to recoup. AND my hair falls out.

Its gotten better over the years. The first time I went on chemo it came out in large clumps, to the point where I had to cut my hair short to hide the gaps. These days it doesn’t fall out en masse. But it does fall out! I have strands all over my floor, all over my pillows, and all over my bed and sheets. It sticks to my clothes, and it stands out cause I’m a redhead these days. You really can’t miss it.

It makes me very self conscious. You don’t need to tell me my hair is everywhere, I KNOW. No one knows better than me!

Most people are pretty cool about it. Sometimes they pick it off me discreetly, or mention I have a chunk sitting on my shoulder. I blush, take care of it, and we act like it didn’t happen.

You know what’s not ok?? Acting like you’re put out because my hair is in your vicinity. I’d love to not have my hair fall out, but I didn’t choose to be chronically ill, and I certainly don’t love being on chemotherapy. Have some fucking sympathy or compassion. But saying “Ew your hair is everywhere” or refusing to touch things in MY room because the hair “grosses” you out… Like are you serious?

How entitled do you have to be that you shame me for something I can’t control and hate about myself?!?! That shit is not ok. And while in my naivety I may have put up with it in the past, I will not longer.

No one in any circumstance is allowed to make you feel bad about yourself or your circumstance. EVER. That shows their insecurities, not yours.

So that will no longer fly with me. Nor should it for anyone else.

A Letter To My Disease

Dear Rheumatoid Disease,

This letter has been a long time coming. I’ve wanted to write for so long, but there were things stopping me. It’s not just that I couldn’t find the right words, or that I was compiling my thoughts and that took time. If it was just that I could have written one letter, and then another, and then another, until everything that needed to be said was on paper. It’s that I’ve been so lost, I haven’t wanted to write at all. Not my blog, not my journal, in fact the only thing I have been doing is coloring. That didn’t need words, or emotions. I could sit there for hours with my books and pencils, watching the colors, deciding what they meant to me, what they represented on that paper, and in my life. Zoning out, hour after hour, day after day. Colors.

 

Sometimes though, the colors aren’t enough, and they can’t take the pain from my mind, they can’t save me from you. I often fantasize what I would say if you were standing right in front of me. If you could be a physical being, what I would say to make you listen. What I would do to you to make to feel what you have done to me. Would I hit you? Would I scream and shout? Or would I be vengeful? Would I do to you what you’ve done to me?

If you were a person for a day I’d make you be me. A taste of your own destruction. I’d make you feel the pain of getting up in the morning knowing that there is no cure for what you have done. Make you feel the humiliation of not being able to open a carton of milk, like you used to be able to do not three years ago. I wonder if you wanted me to feel small and insignificant on purpose, if that was part of your game. I’d make you then bathe, and cry out in pain and shame when you couldn’t squeeze the shampoo bottle, or lift your hands to your head to lather in the bar of soap you were forced to use instead. I wonder if you even care how hard you have made my once simple life. Would you understand my anger when you couldn’t get dressed without screaming, or pull items from the fridge to feed yourself? Or would you laugh at me, at yourself, because this was your design, and what you wanted. Would you smile at the people on the street that will never understand my pain, will you feel happy that your work was a success?

Some days I stand looking in the mirror, hoping to talk to you. Hoping to ask you why, why did you choose me? Was it my body, was it an experiment? Was my body more resilient than others, were you hoping to see something different in me? How did you come to this choice, this body, this severity? And how much longer are you staying? Months? Years? Are you planning to die with me? Or maybe when I go you just move to someone else, another body for you to destroy piece by piece.

 

I wonder…. If I begged, if I pleaded with you to stop… could you? Would you? If I cried for you, showed you how much I don’t want to die… Maybe then you would ease up?

 

No of course you wouldn’t. I see your smile every time one of my bones cracks. I see your joy in the swelling of my joints, and the discoloration of my skin. I feel your content when I can’t find clothes that fit due to my growing body, a side effect of a drug that barely touches you, but causes me great discomfort and shame. What will it take to bring your smugness down? What can I do to destroy you like you’ve destroyed me? Maybe the only way is when this ends, when I take you down kicking and screaming. When you’ve broken everything and all that’s left is the long sleep.

I always sit and wonder what to say to you. How to make you see how wrong you’ve been, how unfair. Why did you do this to me. What are your goals in all of this? If it’s to ruin me, you’re done, you can stop. My bones are brittle like English toffee, my blood poisoned with you, my body exhausted and worn. Every inch of my flesh is crying. Is that enough for you? Have you had enough yet? How much more can I give, how much more do you want?

 

I’m tired. Please, please, please let my body go. Find another. I wont be much entertainment soon. My body is falling apart. Find another. Please. Please. Please.

 

 

 

 

***If you would like to help me financially/medically please visit my page and make a donation: Christine Lilley’s Life Fund

What my disease really took

I’m going to be 34 this year, in just a few short months.

Life right now is different than how I imagined it ten years ago.

Life is different than how I ever imagined it.

I don’t think anyone sits and wonders what their life would really be like if they were ever diagnosed with a debilitating disease. Sure, we make idle remarks about how hard it would be, but no one ever truly believes that it would happen to them, or a loved one.

But then it does and the world turns upside down and everything you knew or wanted fades away to a memory. It sits in a dusty picture frame on a forgotten shelf in the back of your mind along with all the other things you’ll never accomplish.

I used to entertain a lovely dream about meeting someone. Or maybe I already knew them. But in this dream time had stopped and we had realised our perfectness together, and so that all was right in the world. They thought I was the most beautiful creature, just as I thought they were as well. We would sit together in silence, holding hands, and smiling in the knowledge of how lucky we were that we had found the meaning of life.

Then when I got sick my dream started to change. Now it was that this person didn’t care that I was ill, and just loved me all the same. When they looked at me all the pain and suffering would melt away, and I would no longer be a girl who was sick. I would just be a girl. A girl who a boy fell in love with.

I don’t let myself think about that dream anymore, not even the newer one. I look in the mirror and see the face that everyone else sees, the face that he wouldn’t want to see. 45 pounds of steroid weight around my belly, legs, bottom, and face. A pain that never goes away, even when treated with a smile. An air of sadness that I can’t hide no matter how optimistic I act. Tight and shiny purple knuckles, legs covered in black and purple varicose veins, a body that rebels against itself at every turn. It’s not what anyone looks for in a mate, I know. I don’t let myself entertain the dream anymore.

Instead I keep my days full. I keep a tidy house, I cook and bake for friends who want it, I play with my cats and feel comforted by their never waning love and devotion. I feel happy for my friends who have found the life I yearn for but can’t have. I congratulate the news of new life, of new families, of love that was meant to last for someone else.

But I don’t let myself think about what I’ve lost. The part of my disease that no one realises is the worst. The loss that is never talked about because it hurts to wonder about something I can’t have.  The someone I will never have. What my disease really took. The one hope I’m not allowed to dream about. The life I lost when I got sick.

If you would like to help me stay on my feet and live happily and not homeless, please visit my campaign and make a donation to my fund. Thank you.

Christine Lilley’s Life Fund

The pain you cause me

I’ve lived with chronic Rheumatoid pain for two and a half years now. To say that I’m familiar with it would be a gross understatement. It’s a part of my life in the same way that coffee is to a barista. We go hand in hand. Where I go, pain goes. Where pain goes, I follow. That’s probably a weird way of looking at it, but when you’ve been living with that evil twin of yours for so long, it starts to change your outlook.

Everyone who knows me knows how ridiculously optimistic I can be. I’m a glass half full kind of girl. I’m the person that was told she had cancer and promptly asked her mom for a chocolate sundae from McDonald’s. (For those of you who are unaware, McDonald’s hot fudge sundaes make everything seem better.) It’s true that I may internalize a lot of my emotions, and I’ve gotten much better about not playing stovetop jenga. But as stated before I can’t always be strong for everyone. I break down too. Just because you don’t see it happening, doesn’t mean that it’s not. It just means I’m really good at hiding it. And FYI, that doesn’t mean I’m lying, or keeping the truth from you because I’m secretive. It just means that you don’t need to know about every single time I have a sob session in my mom’s car, or when I have an anxiety attack in front of the nurse putting the IV in. That’s really more on a need-to-know basis, and I deem that you need not know.

I’ve been in a lot of pain in the last two months. I’ve been trying really hard to hide it. I put it in a box, then taped it up with duct tape, then painted the entire thing in super glue before wrapping it in several layers of chain mail, and then weighing it down with lead bricks before throwing it into the Mariana Trench. It’s resilient though. There’s a chance it made friends with some deep sea beasties down there and they are helping it come back up Abyss-style…. those bastards.

My therapist told me to bury it. Every one of my friends told me to bury it. And the family members who treat me according to the definition of “family” have told me to bury it. But see..  it’s hard to bury the kind of pain that has haunted you your whole life. No matter how much you tell yourself that you’re better than this, that you deserve better than this, it seeps into your brain anyway.

I made a decision two months ago that I deserved more. I made the decision to be a mature and rational adult. To not let petty tricks and condescending insults ruin my life. I wasn’t going to let degrading words and offensive behaviors have any place in my world.

It was a hard decision.

Because even though I knew those behaviors were wrong, and that no one including me deserved to be treated that way, it’s painful to give up on someone you love.

You shouldn’t have to say goodbye to family if they are still walking the earth. But even more so, you shouldn’t have to have an escape route for being around people who have only ever had words of discouragement for you. You shouldn’t have to pump yourself up to be around someone in case they are in one of their shaming you moods.

So in the end, I don’t know what is more painful for me… The hurt that their words and actions caused, or the fact that I could no longer handle it.

No matter what, no matter if I chose to let it continue or not, I would and will always be in pain because of it. And when I look at my life, my disease, my cancer, and I see what little left I have to be happy about, I get so mad at that pain.

How dare you. How could you cause so much mental pain to someone when all they have ever done was try to make you happy, to impress you, to win your approval. What is so wrong in your life, in your heart, that you see a sick child who’s in pain, real physical pain, ALL THE TIME, and instead of helping, instead of just leaning over and giving a hug, or just one word of hope or encouragement, you instead cut them down? You shame them. You belittle them. You tell them they don’t deserve your trust, your love.

That pain, that overwhelming hurt that I have been feeling for the last two months isn’t radiating from my wrists. My knuckles and purple fingers seem easy to handle. But this pain you delivered to me on purpose, I don’t know if a pill will fix that. I don’t know if a hundred sessions with my therapist would fix it. There’s no remission for this kind of pain.

It’s the pain of knowing you’re not loved. It’s the pain of realizing it after all this time. All these years of lying to myself, hoping you will change, hoping you will wake up one day and remember that I’m here. That I’ve always been here. I just want you to see me. And not insult me and call me names. To not look at me in disgust. To give me a hug when I tell you I have cancer. To come to one chemotherapy session and hold my hand while I’m scared. And not give me some bullshit reason on why you can’t show me your love, or why you won’t support me in my illness because your immature feelings over your 30yr old divorce are keeping you from being a father.

It’s the pain of wanting a Dad, and realizing that I have none.

For those who are willing to help love and support me please visit my donation page. Every little bit helps.

Christine Lilley’s Life Fund