“He [God] spared me.” She said as she told the story of her near-fatal acute infection she survived in her early childhood. “He saved my life because He loves me.” My mind searched for a response, which felt like an hour-long pause. I eventually mustered the willpower to blubber back a polite “Wow.” As she quoted Jeremiah 29:11, I glazed over because all I could picture in my mind were the faces of the dozens of people who hadn't been "spared." Those young and old that had lost their lives to chronic illness, and now, through her words, were being categorized as unlovable by her loving God.
This was when things started to change. This was when I began to change how I viewed my God, my faith, and my spiritual practices differently in the context of living with a chronic illness.
“We do not have a soul, we are a soul.” -George Macdonald, 1892.
As far back as my earliest memories, I cannot recall a time when I didn’t believe in a Creator. Being a deep thinker since childhood, I knew there was a purpose to the undeniably complex design to our bodies, and the marvels of time and space. I believed in a divine fingerprint on human existence, due to our ability to connect with abstract thoughts and ideas, and, most importantly, love more than any other species of known creation.
I remember talking to God on my play Fisher-Price toy rotary phone. Recounting everything from my day at school, to singing my favorite Disney songs, to feeling sad that my mommy had lost her job, was all spilled out on my daily calls on my plastic phone with the Divine. It was an open-ended conversation with the Creator of the Cosmos that felt more personal and casual than my then-Catholic catechism class instructed me to be. No need for memorized prayers. No religious shame or guilt was felt either. Just a reassuring sense that I could be honest about everything, from my fears in the big moments to my apathy in the mundane moments. God was there…in all of it, always.
However, when I became ill at the age of 11, I wondered, in my innocence, what I had done to deserve the punishment that had been allowed to enter my life. The shame and guilt I had brushed aside before, came creeping into the crevices of my young heart. The physical pain and mental anguish lupus had on my growing body and mind was more than I thought I could handle on most days. My sweet, Disney song-singing, God-loving self seemed to shrink down into a phase of alienation from the “land of the living” and most noticeably, of closeness to God.
Let me be clear; I wouldn’t identify an 11-year-old grieving the life they thought they knew as a “faith crisis.” However, I would say it was what some might call a version of a “Dark Night of the Soul,'' a spiritual desolation that was triggered by the intense pain caused by a disease I had zero control over. Having become isolated for so many weeks at a time in the hospital (God bless my mom who did all that she could working two jobs to be there), enduring intense medication side effects, and a sense of no autonomy over my body, perpetuated a notion in my mind that I was being penalized for a crime that I was unaware I had committed.
How long, O Lord? Will you forget me forever? How long will you hide your face from me? -Psalm 13:1
After one of the darkest moments in my journey (for more in this, you can read the Medical PTSD blog), I began to feel something stirring in me. The dry desert started to spring forth a trickle of a well, giving me a revised energy to fight for life again. Call it intuition; call it the Holy Spirit; that stirring was a force. A voice was speaking. And for the first time in a long time, I was in a place on my journey ready to listen.
“I prayed for freedom for twenty years, but received no answer until I prayed with my legs.” - Frederick Douglass
I was being called back to life, being called to move, to act, to get out of sickness stagnation. I went from endless hospital admissions, and homeschool tutors, to being able to return to in-person school for my first and last year of high school. In my senior year I rediscovered my love of the arts and threw myself completely into all that I could. I never entertained the idea that my illness would ever become big enough to swallow me up again.
What followed was what I like to call my ‘warrior years.’ The years of braving it all and not allowing negativity to get me down, as I proudly took the title of “Lupus Warrior.” (I am sure that was not entirely healthy, but I am not here to beat up on my former self). I used my illness as a rallying cry, like one hears at a sporting event, “Let’s Go KELLI…FIGHT! FIGHT! FIGHT!” My positive warrior spirit became a symbol of spiritual tenacity, and on any given day, you might have heard me say, “God can use all things for good” and “God doesn’t give us more than we can handle” as slogans that fueled my fight. As I mentioned in a previous blog, It was a coping mechanism for me, wrapping my situation in positive “certainties” because clearly, prosperity doctrine was my only solid ground. If I allowed myself space not to be positive, I would be engulfed by negativity, and my true thoughts and feelings about my illness would consume me. Asking questions and wrestling with my discomfort was a product of a lack of faith. Or so I thought.
Equating God’s blessings on my life with health and prosperity made me only more and more want to distance myself from the dark and painful reality of living with an unpredictable illness such as lupus. If I was honest with my illness, if I was to admit I was having a flare, would I be seen as broken by the church, by the world, by my God?
“Feelings are something you have, not something you are.” -Shannon L. Alder
My Spiritual Practices
These feelings led me to my knees. I prayed, and I prayed hard. I prayed to be cured. I allowed good hearted and well-intended others to pray over me as well. My body became an unending prayer request. I accepted that my lupus was something that had to be fought and won over, all for the glory of God. Sadly, it took me some time to recognize how ableist these beliefs were and how they had seeped into the church and my own spiritual practices.
After some introspection, a heck of a lot of “ah-ha” moments, and time leaning into and processing my own grief, I began to dismantle the beliefs that I was being punished with an illness because of generational sin, "the Fall" or whatever I did or didn't do to earn God's favor. I started seeing (no pun intended) the story of Jesus healing the blind man in a new light. Jesus healed the blind man, not because he thought he was “less than” but to bring him back to community…back to belonging. The society said he was unworthy of love due to his condition. The world discarded him, and Jesus welcomed him to the table by removing the barriers that society had placed that kept him out.
We, not God, have concluded that a person with a disability/chronic health condition is doing something wrong if they haven’t recovered. Recovery isn’t an option for most disabled people and those with chronic illnesses. I had to come to that realization myself. I had to face my own ableist beliefs and I had to let them all go.
After laying down the misnomers of the “prosperity gospel” and accepting that, as Ecclesiastes says, “Life is elusive!” It doesn’t make sense!” I began to stop looking at God as some sort of “wish granter in the sky” and my illness as “evil.” I also began to let go of the need for certainty. I didn’t cause this, I can’t control it, and I am not cursed because of it. A bullet has no conscience; neither does lupus nor an automobile gone out of control. Pain is the price we pay for being alive.
“Life is pain…anyone who says differently, is selling something.” - The Man in Black, The Princess Bride
One of my favorite books ( already mentioned above) of the Bible is Ecclesiastes, which deconstructs certainty immediately and reiterates trusting God even when life seems paradoxical, uncertain, and absurd. This wisdom book in the Ancient Hebrew Scriptures reminded me in my faith journey to face it all (the rain and the sun) with unflinching honesty, without a facade or need for certainly, and live a life fueled by not my own "warrior might" but by love.
“Our job is to love others without stopping to inquire whether or not they are worthy. That is not our business; in fact, it is nobody’s business. What we are asked to do is to love, and this love itself will render both ourselves and our neighbors worthy.” - Thomas Merton
Why Love Matters More
As we see in the story of Jesus and the blind man, love is not about fixing people - it’s about being with them. It is also not about having the perfect set of doctrine and squandering our precious lives proving everyone else who thinks differently is wrong. In my opinion, Love is not some cosmic filtering system saying some of us who have correct belief's are “in” and some of us are “out.” God doesn’t have favorites. So why do we treat people like He does?
I am thankful for the promises spoken in the book of Zephaniah that says, “I [God] will save the lame and gather the outcast, I will change their shame into praise and renown in all the earth.” This is a daily reminder to me, in my pains, that, "Everything difficult indicates something more than our theory of life yet embraces." -George MacDonald
As I circle back to the story at the top of the blog and what started my evolving view of God, faith, and my spiritual practices, I want to end with some thoughts. I have decided every day to choose to acknowledge this one life I have in the messy moments and in the magical ones and face it all with honesty and love. I hope the work that I have cultivated at More Than Lupus shows that.
My faith has changed from living with a chronic illness, and I believe it has changed for the better. I see God in the love of other people. I see co-flourishing as the Greatest Commandment God has given us. I see how my experience living with lupus has given me a greater understanding of what it means to be human and how I am called to share in the suffering and death of Christ, by taking up the cross on behalf of others and laying down power and privilege for the "least of these." As author Jaren Byas says, “There’s a world waiting for hope, love, justice, kindness – both in our personal interactions and enacted through our policies – and I want to make sure that at the end of the day, I can say that I put my hand to the plow toward those things in very practical ways.”
Love is a verb. It is hard, messy, and it can be a struggle. It is an action word. And in that action, I see God. That is how my faith has changed, and I am thankful for every part of it that led me here.
“God, bless me in this little way, to be able to do small things with great love. One small action at a time, until it’s a bridge-with a span that reaches from my little life to Yours with each act of love. And when I screw up or forget or grow weary, bless me with the courage to begin again. Loving and loving again. Being changed by Your love and transforming the world one little act of love at a time.” - Kate Bowler, Good Enough, p. 37
*Note: I am using male pronouns for God in this blog because that is how most people in Western culture have historically addressed God. I know there are many ways [God] may be addressed, including ways outside of the confines of gender.
Also, I send all my love and gratitude to the kind-hearted welcoming faith communities of Crown Valley Church, Beaverton Christian Church, and others that gave space for worship on the days that I believed and wisdom on the days that I wrestled (and still wrestle).
It is in the context of community where I see God's love.
Kelli (Casas) Roseta
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2023.