September 2018 - Out of the rabbit hole

Why am I still fighting?

This is a question that I asked myself a lot during my last rounds of treatment while the medicine was making me so ill every day, on top of fighting this horrendous disease, and the truth is, I didn’t always have an answer.

I remember being so confident that this wasn’t going to be a big deal. I remember thinking that if I could get through the mental health challenges that I overcame as a youth, then I could do anything. The truth is its way harder than I ever thought it could be.

The lack of access to healthcare for Lyme patients is unbelievable. I mean, I literally would not have believed someone if they’d explained it to me prior to me experiencing it. I never would have believed that it could truly be as atrocious as it actually is. People exaggerate, right? Is what I would have silently thought.

Tonight, as I sit waiting for the sauna to heat up I am feeling accomplished and pushed to my limits about today’s meal prep, while also feeling guilty that the last of the dirty dishes are filling up the sinks – knowing that my body won’t likely allow me to do more today than I’ve already done and that my roommate will wake up to a dirty sink in the morning. The reason I pushed so hard today to meal prep is because treatment starts again tomorrow – the same treatment that I couldn’t tolerate last time due to daily vomiting. As I’m trying to shift my focus from absolute dread and fear to a more healing mindset, I must think about my why.

Why am I still fighting?

I’m not talking about just to live or to just keep fighting because that’s what you’re supposed to do.

Why am I still fighting?

What am I going to tell myself when I’m laying in a pool of sweat on the bathroom floor sobbing in pain at 2am, that is going to give me the will to keep fighting this disease?

This question makes me dig into the deeper depths of my core and look at what I really want out of life, the things that I’m so afraid I may never receive or accomplish that it’s hard to even admit to myself that I want them, because somewhere along the way my inner child picked up the idea that wanting them would make me vulnerable.

I could ramble forever with adjectives and creative wording to make you forget that I’m avoiding the question, however, why am I still fighting?

I’m still fighting because I want to continue this journey and continue learning and adding value to my mind and quality of life.

I’m still fighting because I want to experience love. Real love. Solid love. The kind of love where two people make a genuine, loving commitment to catch the other when they fall. The kind of love where needs are met and compromises are made and laughter is had. The type of love that is patient, humble, and kind.

I’m still fighting because I want to see my brother grow old. I want to see the man he becomes.

I’m still fighting because I want to see my niece grow. I want to support her through her teen and young adult years, and influence the woman she becomes.

I’m still fighting because I want to hear my future baby’s first cry. I want to hold her/him/them in my arms and experience my heart expand.

I’m still fighting because I want to support someone in a positive, life changing way.

I’m still fighting because I want to be a foster mom.

I’m still fighting because I have a gift in my experience and in my voice, and I want to change the future in a positive way.

I’m still fighting because I want to continue to expand my consciousness, and to see how far I can go.

I’m still fighting because I want to connect deeper with the earth, and see where that takes me.

I’m still fighting because this planet needs more light-workers, not less of them.

I’m still fighting because I still have so much left to learn.

I’m still fighting because I still have so much love to give, so much kindness to offer, so much beauty to create, and the world needs as much of that as it can get.

If you are fighting a battle of your own, why are you still fighting? If you aren’t fighting a battle of your own, what do you want out of your life? Have you ever seriously looked at that? Have you taken the steps to put it into place for yourself?

What are you fighting for?

love, wedding, bridesmaid kissing bride Do you ever think to yourself, what the fuck am I doing with my life and what do I even want?

My views on what is truly important in this life and what makes a person valuable have changed significantly since getting sick. I suppose this shouldn’t surprise me, as it is a message that one will often hear from someone who has gone through a near death experience, a life-altering accident, or terminal or chronic illness.

I never believed that I would be good enough if I couldn’t do everything on my own. It’s one thing to be independent, but its another to believe that you are not a valuable human being if you need help sometimes. I took this to such extremes that I put myself in scenarios where I was the main care-giver, house-keeper, and money-maker, responsible for my partner, his two kids (part-time), and my dog. It never crossed my mind to value what I was sacrificing. I believed that it was exactly what would make me a valuable person. I had people who needed me, and I was willing to do all of this for them because in my mind, that’s what was going to make me good enough.

What it really did was break me. Because while I was willing and sacrificing, it wasn’t appreciated. I was still reminded that without him I’d never make it. That no one would ever love me again if I left him. That if I couldn’t manage my 3 businesses, myself, and take care of him and his children (one with different needs as he’s on the spectrum) and my dog and our home – at 23 years old – he was sure to reinforce my belief that I wasn’t worthy.

What does it even mean to make it? Do you hit a certain number in your bank account and suddenly, you’ve made it? Made it where? To what? Do you get married, make and raise beautiful babies, in your single family home with a yard and a white picket fence and a dog and a mailbox with your family name on it and suddenly you wake up one morning and you’ve arrived?

I’ve been living in the illusion of fear for so long now that I forgot what love was.

Most of what I’ve done in my life has been for this illusion, this image of what I thought my life was supposed to be. I thought being a housewife was supposed to be for people who would be taken for granted in exchange for being able to rely on someone else for income. I thought disability was supposed to be for the dying, the completely disabled, or the lazy. I thought family was supposed to be a burden.

What the actual fuck was I thinking and who taught me that?

I thought that overcoming my endometriosis, depression and anxiety was about being stronger and pushing through, so life gave me panic disorder.

I thought that overcoming my endometriosis, depression, anxiety and panic disorder was about being stronger and pushing through, so life gave me a “new best friend”, who later turned out to be my rapist and gave me PTSD and vestibulodynia.

I thought that overcoming my endometriosis, depression, anxiety, panic disorder, PTSD and vestibulodynia was about being stronger and pushing through, so life gave me a mentally and emotionally abusive boyfriend who I let break me and that’s when I ended up with Lyme and co-infections.

I thought that overcoming my new diagnoses of borrelia burgdorferi, babesia microti, bartonella henslae, ehrlichia chaffeensis, rickettsia, west nile, coxsackie virus, Epstein-barr virus, parvovirus B19, and microplasma pneumonia, was about being stronger and pushing through, so most recently we’ve discovered that I have “latent Epstein-barr virus and persistent Lyme (borrelia burgdorferi) in round body form” with a “Fatigue Severity Scale score of 59 [which] is markedly elevated and consistent of a severe level of fatigue. As I have previously documented, I believe that her severe and persistent level of fatigue justifies her being identified with a disability and that disability is likely to be chronic in the context of her presentations.” (Excerpts from my most recent report from my Governor General Award-Winning Internist in Calgary, AB)

What if none of this was to teach me to be stronger?

What if part of my issue and my blockage in healing is my stubborn mindset stuck on the undying need to be better, to be stronger, to push through, to overcome everything on my own?

What if this was to teach me to give in, to surrender? To stop trying to control every little piece of my life and to give those pieces room to fall into place on their own; to learn to lean on people; to learn how to ask for and, more importantly, how to accept help; to not judge myself or others in their own struggle or coping mechanisms or ways of healing. To give up the image in my mind of what I thought my life was supposed to look like and to instead create a lifestyle that works with what is in the present; to understand that the people who taught me how to think and how to live are also just doing their personal best and they don’t necessarily have it right, or that what is right for them may not be right for me; to take action based solely on what feels right for me instead of letting what I think is right for everyone else impact my decision making; that sometimes the people whom we believe that we need in our lives are not really meant for us at all, and that although it is scary, its okay to let them go.

I have fought my life so hard for so long to keep to the image I thought I was supposed to have, only to now realize that maybe it’s not what I ever truly wanted at all.

This realization is a long time coming yet it also feels very sudden and unexpected. I pray (also new to me), that this is the revelation that gives me the confidence to take action and change the trajectory of my life.

I spent the last 6 days up north with some really beautiful people who make conscious decisions every day to love and support one another. My cousin just got married, and for the past 9 months for the first time in their 8 year relationship she has played the role of a housewife. She cooks for him, cleans for him, makes his lunches and he works his ass off and supports them. And they seem to genuinely make this work, because, get this – they both appreciate the other and everything they do, and they show it! Wow. Why did I not think that was possible?! I genuinely, wholeheartedly believed that that was not a real option for anyone who wanted to be happy or good enough. And I am so grateful to have been proven wrong because it is helping me to see that a lot of the views and beliefs that I have or have had in the past are super fucked up and weird and yet also probably very common.

I am sure that I don’t need to explain how I’ve been proven wrong about my past beliefs about disability.

Probably one of the hardest pieces of this realization is that all I’ve ever truly wanted is a family who is able to show how much they love and appreciate me; how much they value me. A family who wants to spend time with me, even if I am unable to do what they’d normally do. A family who wants to learn how to support me and to teach me how to support them. A family who not only wants to show up for you, but is able to, and does.

Maybe this family doesn’t have to be blood. Maybe it isn’t about the individual at all but about their willingness, ability and commitment to unconditionally love. Maybe, as I’ve witnessed recently, it can be one or two or three people who just commit to being there for one another and allowing each other to show up exactly how they are, however that may be. A few people who truly value one another, exactly as they are, and show it. A few people who never let each other forget how much they are loved. A few people who do the work – for themselves and each other. Maybe family doesn’t have to be a burden; maybe it could be the most beautiful and precious thing you ever have – perhaps its the only thing that is truly real and the only thing a human truly needs.

So this is me, surrendering, asking the Universe to help me trust, and praying that love catches my fall.

Thank you Kai, Cam, Cindy, Dustin, Ken, Brittany and Cheyenne for showing me how you unconditionally love each other and work together to support one another each and every day. Kai and Dustin you have built a beautiful, loving family for yourselves, DNA not required. Thank you both for showing me what love looks and feels like in my body.

Month: September 2018

Why am I still fighting?

I Surrender