Daily, in Rochester, they stream into the Mayo Clinic. You can find every countenance here: confident to cataleptic, radiant to rictal; from stoic fortitude to baleful gloom; eyes, wet with hope or wide in desperation.
The motels and hotels, filled with polite impatience, seekers looking to shed their suffering.
And now we’re home. For my son there remains a hard road of recovery, duration unknown; but a fix was found, a cure, a surgical procedure so new that it’s been performed on only a handful of people worldwide. It boggles.
And it shifts something in you — being there, for what turned into a month of quietly managed panic, compounded by cross-border pandemic travel — flights, in the fullest sense.
All illness is uniquely experienced, yet all are bound by this universal drive, this will, this force that wants life, wants you to live.
Now a certain woman was sick and had suffered many things of many physicians, and had spent all that she had and was no better, but rather grew worse. When she had heard of Jesus she pushed through the crowd and touched his garment. For she said, If I may but touch his clothes, I shall be whole. And straightway the illness fled; and she felt in her body that she was healed. -Mark 5:25-29
Monolithic clinic of sickness-conquering science.
Gleaming machines calibrated for resurrection,
drugs named after gods,
procedures peer-reviewed and published by archangels,
inspiring the kind of hope reserved for Adam.
And there is hope, and there is healing.
And there’s a shop here with all kinds of wigs and hats.
And there are pharmacies near as any Starbucks.
And there’s a chapel to suit any faith but unbelief.
And there’s a 16-year-old blond girl
wrenched out of her chair by spasms,
the most beautiful hair you’ve seen,
tangled and caught in the wheels
as she makes impossible angles with her limbs,
her attendant calling for a bit of help — please.
And there’s the rest, with traveling companions,
like me, waiting, with my second-youngest,
trying to flag down help along these vaulted pedways.
Willing to go anywhere, willing to pay anything.
Willing to sit in any chapel and pray away every unbelief:
Dear Lord, may these tears turn to wine.
So lacking any hem to touch
I move toward You through language,
but I fear my language moves You away.
Nevertheless, I’ve read of Your famed mercy,
so let it rain, as it’s your fault, is it not?
that survival, like self-love,
is also symptom
begging for diagnosis.
beautiful, sad and hopeful. A little peek into how things were there, even though hard to comprehend it all
Thanks for that Joanne. It was a ‘journey’.
Deeply moving poetic update that keeps hope alive. Thanks, Steve!
Thank you Ike!
Sending love and wishes for comfort in faith to you.
So very appreciated Alison. Thank you!
Your poem reminded me of a visit to Sainte-Anne-de-Beaupré in Quebec many years ago. Thoughts and prayers to you and your son.
Thanks Ken!
Thanks for this lyrical view into your journey together. I’m so pleased to hear something good happened for your son; something hopeful and new. And your apt capture of the experience of hopes and challenges in the healthcare environment certainly resonated. Wishing all of you some solid rest now.
Thanks for this Wenda. The healthcare environment is as you say, full of hopes and challenges. I’m grateful the post resonated. And thank you for your well-wishes!
Thank you.
Thank you Susan.
“Monolithic clinic of sickness-conquering science.
Gleaming machines calibrated for resurrection,
drugs named after gods”
So much to reflect upon in just these 3 lines. I often contemplate the faith/religion vs. science/technology duality or divide. Do we need to choose? Did God or the gods give us the ingenuity to develop the practice of medicine, the drugs, the miracles and the machines? Is science a religion to some? Whether science or spiritual, can we simply celebrate the hope that comes with healing, a cure or a new treatment?
Sending positive thoughts to your family.
Thank you Diane for your reflection. These are all good and appropriate questions. Of these, I’ll answer the last one with a firm affirmative. Thanks again Diane, and thank you for your positive thoughts.
wow! beautiful, heartbreaking, serene, and challenging all in one. thank you.
Thanks so much Karla!
My goodness, Steve. “Dear Lord, may these tears turn to wine.” such a beautiful thought for those of us collecting plenty of tears. I’m so glad your son has found some hope – and you alongside. Thank you for pouring out your courage for the rest of us.
And isn’t that true, so many collectors of tears. Thanks for this Dave. So truly appreciated.
beautiful poem. beautiful father. beautiful son.
Thank you! So grateful for you Terry Ann.
I am sorry you have had to experience this. I too, have this condition, a large hole caused by a calcification in my spine. It was discovered in January 2021 in Calgary, Alberta. So now, after 2 weeks in hospital, after undergoing so many experimental procedures and tests..including blood patches, I was essentially feeling like like guinea pig, although I understood why things needed to be done, I sit and wait. Will it happen again? They don’t want to operate due to the location. (T-4/T-5).
I feel alone and scared.
I was left completely immobile due to the sagging of my brain at the time, and the immense all consuming pain. I could not even get up to go to the bathroom alone. My eyesight severely diminished, and had double vision for months. 3 months after my hospital stay I am still recovering from the damage to my brain and eyesight.
I truly appreciate your sharing this story. You’ve made me feel less alone.
Hi Jennifer, I think I can speak on behalf of Teryl, and say, he’d know how you feel. And the loneliness and fear only add to the severe pain. My heart goes out to you!
There is light. You might be interested in this April 15th Mayo article. This is the procedure that Teryl received. Dr Brinjijki is the doctor that performed the surgical procedure, and Dr. Cutsworth-Gregory is the doctor who referred Teryl. “Novel endovascular therapy for CSF-venous fistulas – Mayo Clinic” Here’s the link: https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/novel-endovascular-therapy-for-csf-venous-fistulas/mac-20510571?fbclid=IwAR29vfdZGy8u4rJYi6ZhAiDE2pB7vaw8ayeFnVHKpHenAcgsQWlqlBNxEGI
After living with peak feelings of hope, joy, angst, relief, pain, worry, fear, disappointment for 20+/- years and finally resolve.
What a tremendous gift to receive. We are relieved to the point of tears and can find no words to express the depth of our heartfelt joy.
When we meet again we shall enjoy a celebration of the deepest gratitude.
Please pass our kindest thoughts to ‘T’. Now he will will be able to enjoy unfettered energy who knows what journeys lay ahead for him.
Exciting times ahead. Sooooo delightfully happy to know of this brilliant miracle.
Thank you Rianne! Buoyed by your support and care! Will pass it on to Teryl.
??? So full of heart and hope. May the divine grace always protect your son
Heartfelt thank you Ananda!
And May your tears turn to wine, overflowing and abundant
Blessed by your blessing Heather, thank you.
I marvel at your turn of phrase and ability to show the beuty of the poignant.
Thank you so much Lori!
Thanks, Steve, utterly poignant.
But I’m still working on “survival as a symptom, begging a diagnosis.”
They are signs of life, aren’t they.
Thanks Sam. I’m still working on it too, always will I suppose; but yes, signs, symptoms, asking for identification, asked by something outside of me, some mystery? desiring connection?
To surrounding your son, and you dear Stephen
and family
with a true deep sustaining love
to hold you and to
keep you,
always
in the kindest and gentlest
embrace.
My best wishes to you, friend.
Thank you for your big and beautiful heart Tamara!
Survival, an instinct to hold onto those that one holds dear? Or a gift given for unknown reasons? But what of the character and tenacity required to endure long suffering…that is a miracle in itself. And maybe speaks to the strength of ones ability to attach to those that one holds dear. That strength is surely a gift from the invitation extended by ones strongest attachments and the safeguarding of ones heart by those same attachments…the assurance that one is held dear and dearly loved by the ones who matter most. This part of the story is one chapter of the whole.
I stand in awe of T’s tenacity and courage as well as both of you as you stand with him in it.
Thank you Laura, for adding your insight through questions and observations. Strength, courage, tenacity is surely connected to something ineffable within, as well as to what’s outside of us; to others who we hold dear, and who hold us in their hearts. I’m with you, standing in awe of such courage and perseverance, and certainly humbled by witnessing it first hand. Thank you again!
My heart and prayers go out to you and your family Stephen.
Thank you Doug! Truly appreciated!