lose control

Here Eli and I are at our fanciest and not so fanciest. Also, let me introduce you to our puppy! World, meet Major Marvel Matthews.


I recently had another conversation with someone about healing. While I know this was a mean well conversation (as I am sure they all are) I really want to get some points across via my blog on how I feel about healing and how I feel when some of you talk to me about it.
So here it goes; I have lost count of how many people express their wishes for me to be healed. As in tumor free and no autonomic dysfunction. This is absolutely understandable, I get it…life without pain/tumor/sickness sounds a lot more appealing than otherwise. But I believe that ultimately, if that is the focus, then they/we are missing the point. I told this person that more than a tumor/illness free body, I want freedom in my heart and mind. I want to be healed from the emotional challenges that chronic illness and pain cause. I said that as long as my heart and mind are in the right place, I can handle anything that happens to my body. I desire to be a warrior for God. Someone that moves freaking mountains because I just can't cool my fiery Holy spirit jets. I want to remove blinders that are over peoples eyes that keep them from seeing Gods awesome love, grace and mercy. I want to help lead people to this freedom that I have. To this 100% certainty that God is good, always PERIOD. And that even though we don't understand our circumstance, it doesn't change who God is or the level of his greatness, holiness or righteousness. I want to ignite HOPE in peoples hearts. I want to somehow be able to prove to the broken, that we are also whole. This openness to trusting God in all circumstances has opened my heart to all the healing I will ever truly need. Being used by him to my fullest capacity is far more important to me than my present state of physical comfort. I write this with tears streaming down my cheeks because this is my resurrection. This is what heals me. This is my new heart and eyes that see past my tumors and pain and give me freedom.
I no longer live on the shore I washed up on after you spoke to me and my weak boundaries couldn't protect me. When you told me that I am not 'whole' because I have tumors. That I am not in Gods will because I have tumors. That I do not have enough faith when I pray, because if I did I wouldn't have tumors. Your words… so human, so thoughtless caused me to question who I am to God and His love for me. The mindset of 'if I can just have this much faith when I pray, then God will finally do what I am asking and heal me' only feeds our human nature of desiring control. Do you seriously think that you can control God and that He works out of obedience to your faith? Control and Surrender are entirely opposite. Control says that its up to me to get God to do what I am asking. Surrender looks beyond our human desires and says "But not my will Father."
I realize that it is so much easier to tell someone that you wish or are praying for their healing rather than that you wish or are praying that they could endure the journey. But folks…as I am presently in the journey that you are wishing me out of…unless this cup passes, what I truly need is endurance. No, my faith isn't weak. My faith knows God can heal, but my faith also makes my yearning to advance the kingdom of God trump my desire to be tumor free and 'healed'. Was Jesus' faith not the greatest in all humanity? How did He choose to pray? He didn't try to control the situation, he set aside his human desires and surrendered to a glory despite the pain that only His faith told Him of. Sometimes God allows pain and suffering, and sometimes we may never know why. But you know what is a constant? What is an always? Gods greatness. Gods divinity. He knows the whole story, and that truly does carry me. That cradles me in my weakest moments and lifts me higher in my strongest.
Christians, please be careful what you say to others. Words hold SO much power. Too much power for them to be tossed around with little thought, little knowledge, little truth. I beg of you to not be flippant with your words. I beg of you to lose control, surrender your desires. I beg of you to not look at me that way. I beg of you to not step on my peace. I beg of you to not tell me why I am not healed. I beg of you to not speak darkness into the light that has set me free. A part of me would love to be tumor free, but I know there is a purpose for my pain. And I trust that it will only last until its purpose has come to pass. That alone is enough for me to nestle into this peace and freedom.

broken and whole

Ever since my one month post op I have been trying to make this post, today is 10 weeks and 4 days. Clearly it has been hard for me to find the words to express my heart, my mind, my peace and my battles behind all of my medical changes after surgery and the silence that I run to. When I woke from surgery I couldn't speak at all. Nothing would come out. For 4 days I had to write on a board what I needed to say. Maybe my heart is still there. Needing that silence. Needing to sift through the things that do and don't need to be written or spoken. With that, if I were to share the things that remain in my 'cup' after doing some heavy sifting; I will tell you there is peace, hope and beauty despite it all. There always has been. This trach, eyelid droop, incredibly rapid heart rate, dizziness, vomiting issues, uneven pupils that cause double vision and therefore headaches…nothing, NOTHING at all has made me feel like God has abandoned me. I don't feel alone. I feel like God has held me through this all. As my body goes through these changes, as it falls apart.. my spirit keeps rising. I feel broken yet whole at the same time. This body is not who I am and this becomes more and more evident to me as the level of strength between the two grow more and more contrasting. One is not the other, two entirely separate entities.
Now, prior to the heavy sifting…there are moments and days of immense sadness. However this surgery and the changes it has brought upon me in and of itself are not where the roots of this sadness dwell. But instead, something I am used to by now is not getting too comfortable. I find myself needing to constantly adjust to a new normal as my tumors are constantly changing my body. I believe I got to a point that I was at peace with the chronic pain that I was in. But now, with having such a small amount of autonomic function in my body and knowing some dysautonomia cases can grow deadly, I realized that again, in the back of my mind I don't feel like I am going to survive the effects these tumors have on my body. I have faith in God. But faith grows and develops as it is challenged and I am being challenged again by the alter of my life and age of death. Figuring out how to allow my heart into a position that can say 'Ok Lord, if my tumors turn cancerous I trust you' is hard enough. But now I must do the same with whatever extent my dysautonomia has on me. 
Since surgery, as I have been wrestling with my sadness despite my faith I have had a desire for silence. The desire to have a cocoon stage, to have this change, body and spiritually be made in solitude. Aside from my body's changes previously mentioned, I have waited to feel different spiritually and emotionally. I have waited to feel something monumental, yet the only giant that was revealed to me was that I, myself, my core…feels the same. After surgery I was expecting my spirit to be forced to follow my body in its downward spiral of weaker and weaker. But come to find out, it didn't have to. My faith in God has remained stronger than my sadness. My soul stronger than my flesh. Even when my sadness is crippling, my faith is just waiting. Waiting patiently as I go through a very human process. I even have times where I can barely find reason to hope. But deep deep down I still know that I am somehow going to get through it. I still feel like a bruised and ever more broken human, but I also feel like a whole spirit dwelling in heaven. There is maximum benefit in learning how to disconnect from this life and body and live where my soul and heart will dwell forever...in heaven. In doing so, I release faith in myself and thoughts that my only human mind can understand and fully immerse my trust in God. Adjusting is hard, but my faith tells me I must follow the path that gives me freedom. My faith tells me God loves me, He is good, His ways are above my ways. These truths are enough and have carried my soul time and time again back up to those puffy clouds, and again I am set free. 

**I head out to the Mayo Clinic tomorrow. They said to expect at least a week of testing which starts Monday. I am eager, excited and grateful for the opportunity to go to this incredible facility, but I am also pretty nervous for the answers and diagnosis' that will come from it. I covet prayers for my emotions and perspective to stay in truth no matter what happens.

all of me

Well at last... the tears have began to fall. Since February when these new diagnoses's and talks about trach's and feeding tubes (and other tubes and devices) began to happen I have been in a very strange place mentally and emotionally. All the while, never having any tears fall. Well the damn that held them back was removed late Tuesday night. Tears, tears, tears. How cleansing they are. Each drop holding so much weight within it and each drop collected by God. What a sweet thing to know. My faith has never been so blind nor has it ever been so full. It is not dictated by my circumstances but instead it is dictated by His character. And with that; I know I can go all in. So I sat there on that cliff and praised the Lord for the beauty that surrounded me. I opened my arms as far as I could expressing to Him that there is nothing I desire more than to have all of me used by Him.

Disconnected

I have never felt so disconnected, body from soul. It has never been more clear that the bones and skin I'm in is only a place for my soul to dwell. My highs and lows of being fearful and then courageous are nothing more than my humanity battling for control and understanding and then my spirit gaining perspective and victory. I am not made to understand it all, but I am made to serve God. As I let go of the things my humanity desires, I rise higher and higher. Disconnecting, separating, out of my skin right into heaven. While I'm alive I expect battles to continue, and as they do I may feel my body and my world fall apart. But if I step back, disconnect from the breath that makes me human and nestle in the arms of God, I find my place, I find my peace, I find my soul and I am whole once again.

Eleutheromania

"It is for freedom that Christ has set us free. Stand firm, then, and do not let yourselves be burdened again by a yoke of slavery." -Galatians 5:1
Freedom used to lay dormant deep in my bones. It pressed against my skin and ached to come out. Since this new diagnosis a strange thing has happened. My freedom has burst through, it has won and has bathed me in a passion to live like never before. I have prayed long and hard for my freedom to be released and through anguish of my new diagnosis, it came flying forth. I used to be enslaved to unbelief, to doubt and therefor laziness. But now the lies that used to shackle me have come unhinged and I am running. I am running free, arms open wide feeling all of my space. Taking in the freedoms that Christ has given. I encourage you to believe that freedom is there for your taking. And your yoke of slavery can hide in the strangest of places. Ask for them to be revealed so that you can pray for that freedom. Thank you so much Ashley for capturing some incredible photos that speak so loudly of this dance in my heart.

Self Hate Eclipsed

1) Me in my absolute favorite shirt! It is the first of our 'Love First' collection for Tumor Hater! It is the perfect visual representation for what Tumor Hater was founded upon! I am in love with it!
2) Some of my MRI's showing some of my tumors. All of the white is tumor. So crazy and so dumb.
3-10) These capture precious moments from our Tumor Hater Christmas Party for our most recent hero Jorge and his family. From he and his brother Hernan receiving their Tumor Hater Hero capes to meeting Santa and Spider-Man and then of course, the presentation of the $7,610 check. 
Thank you to EVERYONE that made this Tumor Hater Christmas possible. To Spider-Man and Santa Claus. And of course to Sarah, Sarandipidy salon and all of their amazing clients that participated in the Hero Tree and giving these boys an incredible Christmas to remember with all of your generous gifts!



So, here is something that I am super nervous to open up about but I feel like it is important that I do so. By exposing this darkness within me, I can only be allowing room for light and therefor growth and healing.
Sometimes I want to hate my body. My BODY, my CORE, my genetic makeup is what constantly creates these tumors. So at times I am tempted to hate the body that makes them. Its a temptation and a battle that I have yet to completely conquer and put behind me. I notice that when I hate it, I hide it. I make it suffer because its like I believe it deserves nothing good. This betrayal I feel from my body has deep roots that strangle my freedom. My vulnerability and authenticity is buried even from myself when this hatred shows stronger than hope.
Sometimes I feel like I am more tumor than human. That I am pain, that I am more desperate than satisfied. That my identity is in pain rather than triumph, that it is in struggle rather than progress. At times I don't fully know how to feel regarding the pro vs the con. And I feel terribly guilty because of these feelings of self hate. Guilty from the temptation to delve into the 'con' of things and then to sit in the pit for days, or weeks.
When I feel self hate: My insides...my chromosomes are set up to be a tumor producing sweatshop. I feel infested. I feel disgusting. My body feels like it is in a daily triathlon/iron man competition that I was accidentally signed up for. Proving to me constantly how weak it is and is becoming. It dangles 'weak' in front of my face. I can't escape it, I live inside of weakness…of infestation…of pain…of less than. My dreams just don't seem like they can be accomplished in this body.
When I feel guilt: Guilty is mercy in disguise and always comes knocking at the door when self hate seeps back through these scars. I know truth, but I don't always live within it. Having 'guilt' alone proves that I know I am more than what I believe when I self hate, otherwise why would I feel guilt? But at the same time, guilt cripples. Telling me that I don't deserve Tumor Hater or speaking opportunities or blog readers because I haven't conquered self love and freedom so who am I to inspire?
I hate that sometimes I shun light and follow darkness, and let my afflictions grow louder than the love and mercy that is mine for the taking. But how can I feel victorious in victory without knowing the pain in the struggle it took to achieve it. How can I be blissfully happy, unless I know the darkest caves of despair? I know to struggle is only human, and is required for growth. I know what is true. I know how I should feel. But that doesn't mean that it comes easy. As I push my mind and heart to be vulnerable, I can learn how to heal those broken pieces that have gone uncared-for for far too long. And in doing so, I learn the not so secret, secret to finding love, healing and beauty among my ashes.
As I love on others with tumors, it makes me realize I also deserve love. It makes me feel like the ache that far surpasses any tumor pain to feel whole will finally come as I love…you. You tiny little girl and boy that know nothing other than a life with doctors appointments, surgeries and chemo. You, you brave woman, who lost your only child…your son. You, you sweet highschooler that only wants to spread joy and inspiration. You, you sweet man that led a community to be changed by your legacy of love. You, you incredible young man who's wisdom far surpasses your age, teaching us about happiness. As I learn these stories. The love and light that seeps from them…lands perfectly on my broken pieces. And I feel love. My brokenness is eclipsed by your beauty, your bravery, and the glory that shines from you and I feel whole.
True empowering hope can only come when it is all you have, when you have known loss and have had to depend on it for survival. My self hate leaves a mess of me, leaves me in darkness, broken and feeling alone. While there is a time for mourning and sadness, I do not believe there is a time for self hate. Understandable feelings, perhaps yes. But we must find a way out of that darkness. There are others there…search around you will find a hand. Grab a hold of it and walk together toward the light. When I have looked beyond myself, beyond my lacks and losses, it is then that I find healing. Holding your hand. Hearing your story. Just being human. And I am reminded, darkness does not actually exist, it is nothing but the absence of light. There is light and love all around you, seeking it out does not negate your pain and tragedies. It only reveals a reflection of your light that lies within. A light that can be stoked to live and love beyond the burn.