Last week in a moment of discouragement about my progress healing from disease, I allowed myself to write about the mix of feelings. I’m sharing it below, but just so you’re aware…this week, the plot thickened. In the past 48 hours, I drove eight hours to appointments, stopped the medicine we hoped would calm things, saw a new specialist, discussed pains no one ever asks about, entertained new medical opinions, loosened my grip on a definitive diagnosis, and got xrays of joints I rarely think about. It has been ten weeks since I filled with hope and started a treatment for Lupus. Today? More letting go. More letting be. More waiting. I am no stranger to such uncertainty in the valley.
Healing Wholeness & Uncertainty in the Valley
If you’re new to the blog, I have been sharing personal reflections as I fight a cruel disease. A brutal flare is still burning, and new treatment seems to amplify all my weakest areas and add new troubling side effects. Find more of my rollercoaster ride in the personal reflections section.
Written swiftly in a stream of consciousness, I have aimed to capture real time “inner selfies” while in the throes. (Ever notice how most essays with personal growth struggles are written after a full recovery or reconciliation when things are tidier, orderly, and back on track? We rarely get glimpses before resolution; before the chapter when metaphors enlighten and meaning ties it all together.)
I often write in feverish desperation. I also routinely cling to identities to cope that feel very doggone real if only temporary (BAD BAD B!TCH). I want to remember the intensity, flavor, and challenge of each valley and pain. I feel compelled to preserve and honor the grief and pain before compassion and strength arrive. Today my energy is quite low. Creative juices? On vacation with most of my sense of humor. I doubt I’ll be able to be clever with this much pain. When pain increases, it’s tricky to not take yourself and everything else too seriously…but don’t you dare point that out to someone in pain. Not without a helmet!
A few nights ago, awake most the night with waves of discomfort, I felt exhausted after a day spent in the bathroom. My body refused to rest even with nudges from medicine. Maybe my soul needed my full attention to work with anxieties beneath all of this rage. They include fears about hospitalization, feeding tubes, the future, blindness from the treatment, and death. There’s also all this shame that I’m becoming a burden more than a model of recovery. (Yes, the truth is I am always in some way trying to make whatever I’m doing look aesthetically effortless.) I welcomed the panic rising from my bones; I grew spacious enough to feel it all the way through without shrinking. Instead of searching for some portal of escape from it, I moved closer to the fear. Is this what it means to fight and stand up to a bully?
I am always aware of the moon on dark nights; its reassuring presence becomes an anchor when my foot is slipping. I felt the moon’s love abide with me as my muscles and joints ached with heaviness.
Lately I seem to require a full day of recovery just about every other day. While I long to be patient with myself as a new mother might comfort a sick child, my kid seems relentless with temper tantrums.
My husband and I watched a fawn nibbling from our yard yesterday. This prairieland is magic and offers just the divine medicine a fairie requires. But it will also turn dangerous in September when the winds come and trigger my illness. When the temperatures begin to swing wildly, so will my moods and strength. Back to the fawn. Mama loves you left my lips, and I realized this expression of love toward nature is somehow a marker of my well being. As long as those words arise, my soul is probably at rest. But why can I not whisper it to my own weakened body?
Oozing skin lesions near my knee and foot aren’t healing. My weight is scary low. The lopsided look of my scoliosis makes that bikini photoshoot feel out of the question since my right hip sits ridiculously high compared to the left. Fine. No photoshoot is scheduled, but you get the gist. Things aren’t pretty. Neuropathy, nausea, near collapses, and back and shoulder pain haunt the days. I’m trying to not grow bitter. It’s hard. I’m learning to literally breathe air and light into ailing organs autoimmune disease attacks.
It’s never too late to send love to ourselves and others with new tools. To free each other from stories and boxes that no longer fit. To develop new vocabulary for our experiences as we move forward to heal even when we understand full well there is no cure.
I look at my life right where I am and honestly cannot see signs of repair. I wish I could! Quite the contrary. I am physically diminishing and withering more than ten weeks ago. My voice is frail sounding even as I curse. I have reached new highs for disappointing people–burdening them with excessive grief talk and lament. I know my illness is frightening, but I’m struggling to accept how others respond to their fear. In my desperation to be seen (as I disappear), everything grows weirdly wonky and wayyy too heavy…even for me.
I’m more aware of time. Like, c’mon universe, I don’t have all that many years left even if I make a full recovery! I am anxious to get back to normalcy. To taste more miracle right where I am. I have tasted it before. A taste reminds me there is nothing to prove, nothing to lose. Not really.
Come what may, I continue to visualize better health arriving to diseased cells. I imagine unhealed wounds healing and disappearing; my interior landscape burning wildly as it makes space for a fresh seedbed to take root.
But I could use some help from hidden realms of grace about now. A little buoyancy to counter the heaviness and sharp edges. A little more flow in places of stagnant stuckness. Thank you for joining me in this place of stillness.
Peace to you right where you are.
-michele
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Your pain and grief and endurance moves my heart Michelle. You are enduring what we cannot imagine going through ourselves. May you feel held by the Everlasting Arms through all your suffering and pain. Deut 33:27
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i am holding on to those arms.
Hi Michele ,
My heart breaks for you as I read your post today. I want you to know that I pray for you every day my friend. You are going to get through this and there will be a breakthrough. Don’t give up hope. God is here. Sending love and prayers,
Holly
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i believe you. i am trusting.
My Prayers are with you.
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thank you
Sending positive healing thoughts your way.
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xox
Dear Michelle,
We don’t know each other formally but I follow your post almost daily. I wanted to let you know that even those sisters that are unknown to you raise you up in prayer to our wonderful, loving Father in Heaven. In my life I have seen prayer bring miracles to loved ones and I know that it will do the same for you as well.
Peace be with you through our Lord and Savior , Jesus.
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thank you, vicki. thank you for being my sister and standing in the gap. i believe you. xox
Dearest Michelle….I haven’t been able to read or correspond as often since starting to keep our new & first grandson, JJ, several days a week. But please know I am praying & believing that God is working on your behalf even though at times it doesn’t seem so…you are ALWAYS an inspiration & God is using you mightily. I’m praying for some healing and some relief to come very soon for you dear sister. HE will hold you fast even when YOU have no strength to hold on!! Sending much love.
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enjoy that sweet grandchild! congratulations, amy. thank you for the prayer. xox
Damn Michelle, that totally sucks! You’re not a burden to those that love you, never ever . . .
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it does suck. big time. thank you. xox
Michele
I cried reading this today. I’m preparing to return to MD Anderson in Houston next week not know what I will be told on this trip. I have been a part of a clinical trial that has made my hair turn completely white, given me open sores all over my body and stolen my ability to taste. How I understand the struggle to recover my joy and wanting to return to normal. I’m sharing my prayer I’ve prayed so many times. “Help me, Hold me”. I pray you feel held today.
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i do feel held. yes. not healed but held. what a distinction. uncertainty leaves us unsteady. so wobbly. i am imagining your white hair as wisdom arriving. i hope your taste returns soon. that’s hard. a little hope: nerve damage stole my taste for 3 years, but slow growing nerves re-grew, and it returned. i pray these sores heal even as your immune system is tender. i pray you feel God’s hand upon you, his daughter. there is healing wholeness arising even in the absence of cure, even in the presence of uncertainty, even at our weakest.
I appreciate your athenticity. Too often we say we are ok and smile when actually we are screaming “I AM NOT OK” and no one hears it. I pray for your body and spirit. I pray for your caregivers for wisdom, insight and tenacity. Your light still shines.
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thank you so much for the support. i wish healing was linear improvement, but it rarely is. i need the prayer and appreciate it
I am sending a prayer for deep healing and also, positive thoughts for you.
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thank you so much
I don’t know why it has taken me this long to share a comment. Your post is absolutely wonderful. Your words and photos provide a sense of calm annd beauty each morning, something I appreciate more than can be shared here. Plus I share your love for all things French. I am just incredibly sad to learn about your journey but also continually amazed and inspired by your grit, your honesty, and your resilience. May you find the peace you so wish for others. I am sending so many positive thoughts your way…
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thank you for being here with such a grateful heart. soaking in the peace. xox
Michele,
Ive been reading your blog for such a long time and today my heart goes out to you in so many ways. I cannot imagine what you are going thru. You have been such an inspiration to me with your beautiful quotes and lovely stories. You have touched a total stranger, me, in so many ways and you will be in my prayers and thoughts. Please know you are an angel when others are in darkness and you have helped others. Thank you.
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love hearing this and feel blessed to be in your orbit. feeling some of the buoyancy from the prayer. so grateful.
Oh Michele, my dear precious child of God ,voice of the spirit. I hear you I feel you. May our holy Lord grant you the one thing you need right now amidst your violent ocean.
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thank you for naming me and this blessing. xox