These past weeks have been challenging ones for me. Like many others that have chronic illness, I also live with those frustrating mental companions known as depression and anxiety. It’s not hard to understand why I struggle but I often wonder if it is difficult for others to grasp the nature of my depression and anxiety disorders. It’s a rare occurrence when I’m not dealing with multiple health concerns simultaneously. Lately those concerns manifested in bilateral pneumonia, bilateral pleural effusions, the seemingly never ending presence of cutaneous vasculitis, as well as the systemic vasculitis that refuses to calm down.
I wrote previously about my stress I was working through throughout Holy Week. As you may recall it stemmed from my frustration as I tried to find ways to continue singing and performing while my body was losing the tools that allowed me to do so. There was real grief in that. Yet, I don’t always feel like it’s socially acceptable for me to acknowledge that grief publicly.
This past weekend I participated in The Chorus Of Kent County’s concerts. As my family can attest, I was a complete emotional wreck the two weeks leading up to those concerts. I’m fairly certain I drove my mother crazy with the amount of time I spent at the piano trying to sing my part while simultaneously playing the piano accompaniment. I practiced so intensely not because I didn’t know my part but because everything in my body felt wrong when I was singing. It felt as though I was physically incapable of employing the body mechanics I had been vigorously trained in throughout my musical history. Every once in a while I’d just stop singing because I felt like I could not breathe. Gasping for air, face colored with shame for the loss of the tools I used to possess.
It’s not easy watching and feeling your body slowly deteriorate disallowing you to participate in the activities that give you joy. I’d go to our rehearsals and everyone was so supportive and kind. However, I’d find myself embarrassed at my own perceived ineptitude. Several times on my drive home from rehearsals I’d pull over and cry for a bit. Sorrow was overwhelming but it was my burden to carry. Who wants to make others witness your hurts. There is no one here, aside from my parents, who know how I used to sound. So while everyone around me said complimentary things about my voice, internally, I was always thinking about how far my voice has fallen. It sounds ok but it’s not where I want to be.
I realized that I needed to find a way to grieve but I couldn’t figure out where to start or how to approach my grief in a healthy way. So, I turned to the gift of fiction. Years ago I read the phenomenal novel, The Sparrow by Mary Doria Russell. The story pulls you through the messy and painful business of grief while juxtaposed against your faith. It provided me an outlet to work through my own sorrow and anger. I decided to take the time to read it again this past week. I wept through it but found solace in it’s words.
During one of our concert dress rehearsals one of our small ensembles were singing through the Beatles song, When I’m 64. As they were singing one of my choir buddies jokingly mentioned that she was closing in on 64. We laughed a bit and I replied, “Gosh, I hope I don’t make it to 64.” My friend giggled a bit but also tried to encourage me to not joke about that. I replied that I wasn’t joking. Just thinking about living another 32 years in this body was overwhelming. Sure, breakthroughs may happen but let’s not delude ourselves here. Even if they find a cure for Lupus it has already damaged my body in ways that can’t be recovered.
32 more years of gasping for air. 32 more years of losing mobility. 32 more years of disfiguring vasculitis. 32 more years of a weak stomach. 32 more years of constant adaptation. 32 more years of constant and exhausting pain. God, have mercy.
And while it would also mean 32 more years of relationship with dear friends and family. I’m not always sure it’s a good trade off for any of us.
When I express this the majority of people are, if not horrified, than at least highly concerned. It’s probable that they worry I’ll consider suicide. Let me put you all at ease, I’m not. It’s not that I want to actively seek ending my life. I just don’t enjoy imagining living like this for that long. It’s a delicate perspective to explain. If you’ve not experienced the toll that severe illness can take it’s unlikely that you can relate.
My Christian friends will often try to comfort through faith platitudes. I always appreciate that they genuinely care and are trying to encourage me. However, I find most of those platitudes to contain poor theology and I’m never quite sure how to respond when I disagree with those well worn cliches. Sure, I smile and try to laugh my way through. I keep moving forward. I do my best to downplay the challenges but it doesn’t mean I enjoy any of it. I start to feel like a fraud. Every compliment over how well I deal with my illness makes me uncomfortable because if people saw me at home or heard my internal dialogue I doubt they’d think I dealt with it well at all. Truth is, everyday I confront my deep anger and hurt.
Those folks who see my walk and see the Divine’s presence miraculously keeping me alive probably think I should be thankful for those times where I could have died and did not. Which, of course I am thankful, but at times I’m a bit resentful over those experiences. I’m sure that confuses a lot of people. I’ve never been able to adequately explain why I have some resentment. That is, I couldn’t until I once again read The Sparrow.
The story follows a Jesuit priest who was the only surviving member of a mission that made first contact with intelligent life on another planet. He comes back to Earth maimed, despondent, and with a horrific reputation. Another team from Earth followed behind the original mission 3 years later only to discover a planet divided in violence which was blamed on the influence of the original team from Earth. They finally track down the Jesuit priest mortified to find him in the roll of a prostitute and witness what they believe is his intentional action to murder a child. Needless to say, those reports from the following team caused a massive outcry against the Jesuit priest. The full story is revealed in the inquisition by Jesuit leaders while the priest answers their questions leading the reader into a series of flashbacks that slowly reveal what occurred. One of the main questions that is wrestled with by the Jesuit inquisitors was how a man who was reported to have been experiencing a true mystical experience, so much so that his superiors indicated that he should be looked at in consideration of sainthood, could fall into such depravity.
Now, I’ve never made contact with an alien species nor have I ever been considered for sainthood. I have however experienced what it feels like to have a crisis of faith after watching your world go up in flames. That constant rub of realizing you really were doing all you could to follow the will of the Divine and still you get epically burned. When I reread this book and came across a certain line I clung to it saying out loud “Yes! Yes! That’s it exactly!” What could that quote have possibly said to provoke such a response? I’ll tell you. Mary Doria Russell writes the following statement through the voice of the fallen Jesuit priest:
“He wondered then if Jesus expected gratitude as Lazarus emerged, stinking, from the crypt. Maybe Lazarus was a disappointment to everyone, too.”
Just sit with that for a moment.
How many times have we heard the story of Lazarus? How often did you think about what the practical implications of that experience were? I’ll be honest, I never really took the time to think about what it would be like. I think I assumed he just came back to life good as new and smelling like a rose. That his story was only important because it was used as a medium to share the saving nature of the messiah. I don’t know why I thought that. I mean, even when Jesus arose he still had the wounds of the cross. Do you think Lazarus made out differently? I don’t know. It’s all speculation at this point but I think it’s worthy speculation to explore.
I wonder if Lazarus was overwhelmed and exhausted. I wonder if he said to his sister Martha, “I’m glad I’m here with you but I’m worn from the burden of this body.” I wonder if Martha replied, “God never gives us more than we can handle” or if she said “But look at the miracle you are! You’re an inspiration to everyone who hears your story.” I wonder if Lazarus ever learned how to reconcile his death with his new life. I wonder what the conversation he shared with Jesus sounded like.
I think Lazarus would get why making it to 64 sounds like a bad trade off. I bet if I got to have a conversation with Lazarus he would understand the intricate reality of thankfulness entwined with resentment. To be a miracle manifested is a heavy responsibility.
Everyday I feel my body lose a little more. Every song I feel the death of that gift creeping in. Everyday I feel the weight of maintaining a stance of thankfulness and optimism despite how utterly broken I am. Everyday I come to the Divine asking how I can find a way to be thankful that I keep getting thrown back into this life. If I saw Jesus there’s no question that I’d answer his call eventually but I’d probably grumble about it. Perhaps I wouldn’t grumpily openly to every one but I would grumble to Jesus. I know Jesus can take it. That he encourages that. After all, if I can’t tell Jesus that his call is a little more than I can handle how will the Divine pull me through. It is through my acknowledged weakness that I find the support and strength the Divine has cultivated around me.
I don’t know the answers here. I don’t know how to walk this path any other way. What I do know is that I don’t want to be a 64 year old Lazarus but if that is what the Divine asks of me I’ll do my best to follow Lazarus’ lead. I’ll find ways to smile and be optimistic. I’ll find ways to move forward and when I inevitably come to the end of this life I know that like with Lazarus, Jesus will weep and then call me to his side. Thanks be to God.