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Climbing the Stairs

Writer's picture: Shannon CaeleyShannon Caeley

Updated: Jan 27

Today, something wonderful happened. I was thinking to myself how I’d like to walk down the rather steep and long flight of steps that goes from our front porch to the driveway below. So I got out of my wheelchair and did. It felt rather analogous to an experience I had a few months ago when, after my second dose of my weekly biologic therapy, I walked up and down along the railing outside our garage, holding onto it nervously, but feeling a faint jab of hope—what if this was real?


You might be surprised I’ve waited SO long to say anything about this. But if you had seen the past 6 years of my life up close, you wouldn’t be. For so long, I let myself get excited about new medications, therapies, or treatments I’d try, only to have my hope come crashing down when the treatment failed to help at all, or (more commonly) debilitating side effects appeared. Nothing feels certain when you are living in a body that is deeply confused and thinks that your own cells are your worst enemy. 2024 as a year was especially gruesome in this way, as we found that a great many doctors thought I’d tried everything and that we’d run out of options to treat the thing that was slowly stealing my intellect and bodily autonomy. It was through the abounding mercy of a most Holy and Magnificent Father that we have ended up here, where I started this post—me walking down a flight of steps that have been an immense barrier to me for a year.


In August we regained contact with a doctor who had previously given us a measure of hope that she might have some insight into my case. I underwent a battery of tests there in California, and we found that according to the results I should be a relatively normal and healthy person. However unlike other doctors, this one believes the patients’ story so much that she is willing to believe that there are diseases out there that have not been discovered yet, which have a mechanism by which they can be treated, even if we don’t have the numbers on a test to tell us exactly what they are. So based off a few things, she suggested a couple options which we could try in attempt to treat me, and the Lord led us to one, a biologic infusion that did not exist 3 years ago. I started it in October with great trepidation, my previous experience with any and all treatment constantly reminding me that this one as well was unlikely to succeed. But through the Lord’s marvelous mercy, this one not only helped me, but it also brought with it no side effects whatsoever, an almost unheard of phenomena in my case. It was as if my body was crying out for this infusion.


Suddenly, I could talk again, most of the time clearly and without my words being confused. I could walk, increasingly more consistently and assuredly. My ability to reason and use the logic centers in my brain improved dramatically as well, and has continued to do so.


For the first time in the whole course of my life, I have been climbing, instead of falling. My health is improving instead of dropping ever more steadily.


In November, I got a port implanted in my chest, a device that gives easy venous access, so that I could continue my biologic therapy. In the past weeks, this has also opened up the opportunity for me to begin saline infusions, which seem to be showing promise in providing some improvement to my chronic and debilitating heart rate issues.


There are still a lot of things that need help, the unfortunate fact of me having been untreated for so long is that more things have had an opportunity to go wrong. Additionally, all of these things, these amazing improvements and steps forward could suddenly stop. I could suddenly lose all I have gained. That’s the reality of my situation, things will likely always be somewhat tenuous and uncertain, but the incredible thing is, that is ok. The Lord has shown Himself to me, time and time again, as infinitely faithful. It’s why I sat on the bottom of the steps of the front porch this afternoon, singing a verse of a hymn which I had sung all through last year—“Praise to the Lord, who with marvelous wisdom hath made thee. Decked thee with health, and with loving hand guided and stayed thee. How oft in grief hath not He brought thee relief, spreading His wings to o’er shade thee.”

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Dear 2025,

Dear 2025,

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This is such an awesome update! I am so so happy to hear this progress! Thank you God!

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He is so good!!

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Soli Deo Gloria

© 2024 by Shannon Caeley

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