I am whole

My mother was a child of the 50’s, and raised by her mother with certain ideals in her head. She passed most of these on to me, and I followed them with diligence, all except one. In the 50’s women were raised to look for a man to support them in life. Someone who would marry them, have children with them, and basically be their “other half”.

I could not follow in my mother footsteps here. I never thought I needed a man (or anyone) to complete me. I didn’t need to find my other half because I wasn’t a half. I was whole. I only hoped that one day I would find someone(s) who valued me for my wholeness and accepted me, including my flaws and everything that made me the whole person I was.

There have been many that have come and gone. I have also spent many years wondering if I could even hope to find someone(s) to accept parts of me, let alone the whole of me.

I’ve come to realize that we as humans seek perfection where it doesn’t exist. We look for the counterparts of ourselves even when we swear we don’t need or want them. We want our partners to be an ideal that doesn’t exist. And yet we push our way through relationships intent on getting what we want, despite our unrealistic expectations.

Perhaps in this next chapter of my life I will remember that perfection does not exist. I will remember that we can’t have our cake and eat it too. And that compromise doesn’t mean sacrificing who you are.

I will remember what I am worth. I don’t need to find my feet, because I’m already standing. I will remember that giving someone my heart doesn’t mean they will accept it, and that that’s ok. I will remember that I am beautiful. I will remember that I am strong. I will remember that I am a whole person.

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We’ve still got time

For the last two years I’ve lived on a clock.

A clock that has been ticking away the moments to where I meet my end. My illness eating away parts of me that are unseen.

Because of this I’ve adjusted to a “come what may” attitude towards life. I’ve been living free and fearless, feeling that this was the only way for me to live my life to the fullest.

But I have recently come to realize that this may not work for my anymore. I can no longer live in the shadow of my disease.

I have people I care about and friends whom are important to me. The ‘come what may’ philosophy only worked for me when I had nothing to live for and therefore had no fear of what happened to me.

This is no longer an accurate representation of my life.

Maybe it’s that 2018 is in quick approach and it makes us all think about what is important in our lives.

Love. Family. Friendship. Truth. Fun. Happiness.

No I don’t suddenly fear death or the end of my being, despite that always lurking.

No, I don’t fear the clock of life.

I fear the loss of the important things.

People go through their entire lives not being truthful to themselves and others. Life is short, no matter what time clock we are all on. Cherish the time that is given. Share your feelings. Tell your friends they are important to you. Tell your loves what they mean to you.

Instead of being fearless, respect the time you’re given and use it wisely. It’s not to late to be truthful to who you are.

Our footprints

I recently ended a two week long road trip around the South Island of New Zealand. A trip that I never thought I’d be able to take at this point in my life.

At 36, I never thought I’d be struggling under the burden of multiple chronic illnesses. Never thought that I would live each day in pain and fatigue, wondering if or when it would all end. In March of 2016, one of the eleven doctors and specialists that I saw on a regular basis told me that I was living on a clock. A clock that no woman in her mid-thirties should have had to think about. A clock that was slowly counting down the time unto which my life would end. I had time, years in fact. But not decades, like most my age looked forward to. Ten years minimum, fifteen if I got lucky.

I took that news on my own, silently in his office, starting at my hands as if they were supposed to provide me with the answers he didn’t have. If they could find a medication that worked for me, more time could be bought. But they hadn’t found anything in the years leading up, and every day my disease turned more aggressive. Every time I visited a doctor a new diagnosis would be presented, or the bad news of a failed medication would be shared. Years of allergies and intolerance to the leading drugs for my diseases, countless failed treatments, and pain, so much pain. And then to hear that despite all my optimism I was going to die sooner than maybe even my own parents…

Five months later I landed in the Intensive Cardiac Unit at Queens Medical Center for ten days. I survived a “multiple cardiac event”, according to my cardiologist and the medical team that looked after me. Despite my doctors projections, my body had other ideas in mind for my time left on earth.

But something changed in me the night that I almost died. It’s not that I wanted to go… Sure some of us living with chronic pain have been down that road where we wonder if the pain is worth going on. Nothing as dark as giving into those thoughts though. And in the middle of my second heart attack of the night on my third night in hospital, apparently when the pain became too great that I actually blacked out, I had an epiphany.

No, I did not “see the light“. I mean yes, there was light, but clearly it was the doctors shining something in my face trying to wake me. I did however feel like I had a choice. A choice on whether to let go, or to continue on.

I don’t know how long I was in that place, probably only seconds. Later my doctors told me I could have died. And I knew if I had been willing to give up, I would have. But something had changed. Despite all the pain, and the knowing I didn’t have long, I still wanted to continue. Something told me that I had purpose.

A year and a half later I finally understand what that is.

Earlier this year I made the life changing decision to move to New Zealand, as healthcare was more accessible for me there as I was a citizen. More so than it was in the US, as it wasn’t affordable, even on Federal Disability. It was a chance to turn my life around as well, live healthier, make friends, maybe find my purpose.

I started bi-monthly Infliximab infusions in June, and had successfully gotten myself off most of my hardcore painkillers by October. I’d even lost a large portion of weight that I’d gained from years of Prednisone usage. I got some new hobbies, joined groups, and made friends, so many friends. I even started dating for the first time in two and a half years.

Sure, I was still in pain. My disease didn’t magically disappear because I moved. Chronic illnesses don’t drift off when you find love, despite what Disney movies try to teach us. I still spent multiple days in bed, fatigued beyond repair. Lung Disease reared its ugly head in a new diagnosis in August. Lupus followed soon after..

The change was that I felt I was around more people that supported me. People didn’t treat me as pitiful, and because of that I was able to let the real me shine through. I reclaimed the person I used to be, maybe not in body, but definitely in spirit. And I realise now it’s all because of footprints.

Just like others footprints made an impression on me during my illness, my footprints were helping others too. I accepted the love and generosity of friends and strangers in Hawaii because my blog had reached them in ways I didn’t know. I couldn’t see that the knowledge I’d learned in my own experiences were helping people just as those whose generosity helped me. Just by listening to a friend, or sharing a meal, I was leaving footprints on the journey of others, just as they leave theirs on mine.

Today as my partner and I concluded our two week vacation, one that I wouldn’t have taken had I not left footprints on his journey as equally as he left his on mine, I had my epiphany. We were talking with our Airbnb host, just as we were getting ready to depart for the airport, and she shared that she had lupus. She shared this only because I shared that I wrote a blog about living with invisible illnesses. Through this tiny piece of information she came to not only understand that she shouldn’t feel alone, but also some references I gave her for support groups. She had no idea the resources that were available to her, feeling isolated by friends and family who couldn’t or wouldn’t understand.

On the plane ride home I thought about my footprints… If I can leave pieces of myself behind, to help or to grow or to love, then no matter how much time I have left, that time was worthy. I have and will continue to make a difference on those who choose to share my journey with me, just as I share theirs.

Our footprints, my footprints, matter…

I hope you’re thankful

Everyday I see people on the street living their lives, and I wonder if they are thankful for what they have.

I saw a woman at the mall yesterday with her arms full with shopping bags, they were literally dragging on the ground, and she was struggling to get a better hold of them. She turned to a man I presume was her husband and was grumbling about something I couldn’t make out. In the end she left her bags at her husband’s feet, took the credit card he pulled from his wallet, and left him sitting there looking exhausted and a bit sad. And I wondered… Was she thankful to have a husband that sat and watched her shopping while she strut all over the mall in search of the perfect stiletto? Was she thankful to live a life in which she was financially able to shop til she dropped? Was she thankful to have a life at all?

I often wonder if people realize how lucky they are to live the lives they have. If they are thankful to be living at all. How often do you really sit back and contemplate your own existence? How often are you thankful for the roof over your head, the food at your dinner table, the air in your lungs?
I think people, society, humans take life for granted. Becoming so accustomed to a certain way of life, we now take it for granted.

I wonder if that woman in the mall has ever known real hunger, or what it feels like to wonder where her next meal would come from? I wonder if the barista from my local coffee shop has ever been homeless? I wonder if any of my doctors have ever experienced real, chronic pain? I wonder how many people out there in the world wake up every day like I do, wondering if they will ever be well again?

I don’t take my life for granted.
I am very aware of how little money I have, and how very much pain I have. I am aware how my roof over my head is an illusion that could be taken from me in a second,  and how many meals I have left in my pantry. I know exactly how little true friends I have, and how many not so true there are as well. I am aware of who my real family members are, the ones that support me no matter what and would give everything and anything to help me, and I know the ones who just like the title.

I can’t take things for granted. If I did, I’d be in a very different place than I am now. I’ve learned who I can trust, and who I must be cautious around. I’ve learned exactly how far I can make my food stamps stretch, and how many meals I have til I’ll be hungry again. I’ve learned that you don’t need new clothes, music, and trinkets to be happy; just a $2 used DVD, a pot of hot tea, and two cuddly cats on your lap.

Take some time and have a wonder about it yourself. How thankful are you for the life you’ve been given? And have you said thank you for it?

If you would like to help me in my life please visit my campaign page:
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