A few weeks ago my daughter, Quincy, read through Robinson Crusoe for school. We listened to parts of it on audio and I overheard Robinson say, when he crashed to the shore of the island, “Thank God I am alive.” I can still hear it plain as day.
“Thank God I am alive.” It wasn’t so much the way it was said, the context, or even the circumstances. It was my reaction. I immediately thought, “Why would anyone be thankful for that?”
In my mind, death is entry into a place with no pain. Hear me clearly: I am not suicidal and I make sure to keep a dialogue going with my husband when I do fall into the ditch of depression. As much as there is for me here, I can say without hesitation, that I am excited to be in heaven. Death has no consequence to me. It is my freedom from this suffering. I have nothing to lose.
In those moments of realizing just how disconnected I was from this life, I became saddened, angry, and guilty. It’s not that I am not grateful for the beautiful blessings I have in my life, it’s just harder to appreciate them when you are unwell. The revelation that I was so beaten down in body and mind and spirit, just flooded me.
I chose to kick things in high gear and be more aggressive than I wanted to be with my application to the neurology department at the Mayo Clinic. Once and for all, I could face this MS thing and figure it all out for sure. My case is so atypical and complicated. Is it really MS? Is it really progressive MS? Nothing has been easy.
After speaking with my family practitioner, my friends with Mayo Clinic experience, my husband, and doing my own research, I felt confident that if any place could help change my life, it would be the Mayo Clinic.
This brought me so much hope. What if life didn’t have to be painful? Hope. Nobody sees how much I can’t do because I’m worn out. Nobody sees how much Toby and the kids have to sacrifice beause I don’t feel well. We don’t get vacations, we get medical tests, treatments, and hospital bills. My husband works in a job he is amazing at but has no passion for, because of the health insurance we have to have for an illness we can’t treat. I needed hope. Big hope.
My prayer life changed over the few weeks we prepared the final paperwork. I felt *IN* my prayers. Friends prayed, family prayed. Aaaaaaannnnnnnnnnnnnnd:
I totally got rejected.
I guess I don’t meet the application criteria. We are not given that information. The letter was extremely vague. Toby brought it to me at work Saturday afternoon with the saddest eyes. I left in tears, certain that life was going to suck forever. We had all prayed. I was asking for a doctor… how could the Lord deny someone a doctor… in America? It seemed like a cruel joke. Get my hopes up, put myself out there, and then whack me in the knees while everyone is watching.
Is this really the God I believe in? It rocked my world. Toby and I talked about doing this life thing with God and without God. Sometimes it feels so much easier to do it without God because how can you explain a father who leaves his only son on a cross to die and blesses his daughter with a life of struggle and pain?
Ultimately, Sunday morning I had to make a choice. I was up most of the night crying. Thinking I would start getting my business ready for sale, anticipating that in the next few years I would be a vegetable just like my grandma was. Yay Jesus! I was irreverent. Bitter. Upset. Guarded. I felt forgotten, rejected, alone. “Sure, He is always with us,” say the perfect favored people who never get ditched by God.
Sunday morning Toby and Tripp stayed asleep late. The girls were routinely taken to church by grandma. I debated what to do. Did I want to go to church? I did not want to be any closer to God. He was freakin’ me out. I did, however, find a very curious spot in myself that questioned what Jesus would have done.
I’ve been studying him. The human Jesus. Trying to understand why I should value what he did, because honestly, it didn’t mean enough to me. I have actually thought, “I didn’t ask him to do it, but I am supposed to be thankful because I get to live a life of pain and misery? Thanks, Jesus.”
I can only confess these intimate thoughts because my mind has been renewed. The thing I find inexplicably interesting right now is that I absolutely do not know where I stand with Father God. But, me and JC are tight. Is this even possible? My brain is slow.
After debating a half hour or so, Sunday, I finally decided I would go to church. But, I wasn’t getting fancy, I wasn’t showing up until service started, and I could not talk to anyone about the Mayo. No eye contact.
I made it to church, puffy eyes, in the middle of a row, perfectly alone. And then, I spot the gold dishes stacked up in front of the Pastor’s podium and stare them down. Communion. Publicly partaking in the bread and juice as a symbol of your acknowledgement in Christ. The pastor cautioned us that our hearts ought to be right with God before we take communion. Was I? My heart was hardened. My eyes burned with tears for two reasons: 1. Was I right with God? and 2. I’m alone.
If you have intention tremor, it is extremely difficult to make visually guided movements with your hands. The test they use in the neurologist’s office is having the patient use their pointer finger to repetitively touch their nose, the doctor’s finger or pencil tip, and back to their nose. If the tremor gets worse the closer you get to the target, it’s defined as intentional tremor – it’s only during meaningful, voluntary actions. Like getting communion cups and breadcrumbs.
Here I am trying to figure out if I should partake or not and, if so, how do I do it? I decided since I went to church in pursuit of Jesus, I wasn’t completely righteous, but righteous enough to make the choice to participate. “Righteous enough” was probably not the commitment the Pastor was looking for. But, I decided I was gonna do it.
I glanced at one of the ushers to the left and a lady down the pew from me to the right who walked in late. Tate was right by me, but that’s like having a giant gorilla in a parka with a badminton racket to rely on. I finally decided the usher on the left was quickest and I tried to discretely ask her to grab the tray for me. I whispered that I needed help. She nodded and smiled and then… did not move. As the tray was passed before me I had no choice but to grab it. I reached for it with my left hand, but as I tried to grab the 1/4″ bread piece, I knocked others off the small dish in the center and I knew I couldn’t get the teeny juice cup. I switch hands. It is at that moment of crisis when me, the usher, and my gorilla girl all sort of realize, my tremor is going to spill all of the juice. My usher-friend realized what I had been asking and stepped right in. Toby is almost always with me, so this has never been an issue. But, the more I sat there with my miniature fluted cup and bread… I felt embarrassed and mad all at once. I didn’t know how many people behind me saw me shake. I wonder if they thought I was detoxing. I sort of hope so now. Fun story.
The experience rubbed me the wrong way and it felt like another one of God’s cruel jokes. Deny me the very medical help that I need just to take part in Communion. Frustrated.
My pastor and his wife checked up on us later that day. I don’t know why. Nobody has clearly told them how clinically crazy we are. Messages. Prayers. Friends. By Sunday evening, I felt like I was brushing myself off. Monday I was sad, but in the Word. Today I took a much needed day off. It was difficult, actually. I went out this morning almost lost as to what to do. I came home from an errand and felt myself somehow moving forward in an awkward way.
Honestly, I think I’ve got some valid points to be a little pissy. God has heard an earful. I can’t tell you if I please Him or appall him. All I can say is that I am super thankful that mercy trumps judgement because I suck at life and I can’t imagine him liking me.
I felt led by the spirit to write a letter to the radiology group that serviced my last MRI. I’ve asked for them to explain what I don’t understand. Basically, I need something bad to happen before something good can happen. The last MRI indicated lesions in both hemispheres. My 2009 scan only had lesions on the right. If I do, in fact, have new spots, it will help validate the progression of the disease and open doors to treatment.
Somehow, getting crushed by the medical giant of the Earth doesn’t hurt as bad today. I think the reason why, is because I made a choice. Even though I didn’t want to, I went to church. I chose to take communion. I chose to meet with my small group Monday morning to talk Bible. I am getting better at handling disappointment as a Christian. It has been a process. I am so weak in faith that I feel sort of like a fish out of water when it comes to trusting God’s plan.
“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” -Romans 15:13
God is my only hope. By default. LOL. And, I’m thinking I’m gonna make it. I believe in His strength. I know I am a wiener at all of this. Who knows? Maybe I will be miraculously healed. Maybe I will end up in the care center like Gramma Franka and Toby will come visit me every sunday just like Papa Roy. Maybe I will never get any better, but never get any worse. How I handle it, as trite as it sounds, is a choice. I can choose to allow this illness to come between me and God. I can decide it’s too hard to get out of bed, too embarrassing to take communion, and too painful to move… and I will go back to that desolate dark place I came from, shrivel up, and wither away.
I will make a choice.
Thank God I am alive.