Until Tomorrow…

How we live while we’re waiting, in the unknowns, the unanswered questions, the worries and anticipations ACTUALLY make up most of our lives! Doesn’t it? We rarely know anything for sure.

We may know what our plans are for the next hour, but even then, things can change so quickly. I think that is why I resonate more with the Saturday of Easter weekend…the day before the miracle, the day of confusing thoughts, doubts, curiosity, and fear. Most of our lives are a lot like a Saturday…but thankfully, we don’t have to let it be the reality of how we live.

I remember a poster that I had on my wall as a teenager:

"People are like stained-glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within." (Elizabeth Kübler-Ross)

Difficult times in life test us, push us to either do what our knee-jerk reactions are (anxiety, worry, obsessive, control tactics), or we can choose to live differently. Only by the grace of God is there a different way to live and light in my soul.

Tomorrow, I’m going for tests to determine if I have Crohn’s disease, suspected by my gastroenterologist and my recent symptoms, which are about 9/10. You may wonder, “Heather, why not just write the blog after tomorrow, when you’ve got facts?” Good question. I thought about that too, but one of the values that I have about writing is that I allow myself to be transparent, vulnerable, because I believe that is where we connect as humans, and that is where God most beautifully can demonstrate his love, in our weakness.

The past few months have been a mix of new bodily symptoms, nausea, fever, fewer foods my body can digest, narrowing of the small intestine, partial bowel blockages, pain, cramping and finally this past week (pardon the gross factor), blood filling my ostomy bag. A clear sign that the ileostomy is not working properly and something has changed. I’ve lost 15 lbs (rare for me), and my thyroid meds have needed to change due to that as well. So, a CT scan was done, and back to the surgeon, then the gastroenterologist, who has booked tests for tomorrow. A barium drink with fluoroscopy imaging to watch how the liquid moves over the period of a few hours, determine where strictures are and another procedure, maybe tomorrow or another day, not sure yet, an ileoscope, where, under sedation, the doctor will insert a scope into my ileostomy to see how the small intestine is doing, search for problems. (I am relieved to say that I will NEVER have to have a colonoscopy again since that whole part of my body was removed a year ago!! THAT makes me happy!! 😁 A blessing I will count over and over!)

Some of you know that we have a book in process called “The Art of Pain Management.” (It has been set aside until we have a season of life where we can invest energy into its completion.) It’s a self-help book, in a way, but using art as the theme, since the book is the combined work of my writing and my husband’s creativity. It describes and demonstrates the messiness of art, the sketching, the experimental, risk-taking, imperfection-acceptance needed to make something beautiful. Pain and illness management is like that. There is no clear formula, no paint-by-number method that, when followed, results in relief or desired results. My husband shows up to his easel every day, whether he is inspired or not, puts in the work, in a disciplined and flexible way, practicing, working at it over and over, and the results are stunning, and a reflection of who he is.

As I anticipate a new diagnosis in my own life, I looked at our book draft again this week and re-read that particular section, partially to see if it’s still relevant and also curious if I could learn something that applies to this week. What I resonated with was a chapter called “Limiting Research”. It is easy to reach for information as a way of feeling in control, and often we dig deep into Google or AI to find answers, soothing our anxieties with facts. But does it totally satisfy? Not really. It helps, for sure, and often I like to research all the way from “what is this?” to “how bad can this get?” And I’m guessing you’ve done that too. But then we may shift our anxiety about the unknown into an obsessive grip on knowing more and more, all the time, never letting our minds rest or absorb or process how it feels. So I practiced what our book said. Here’s what I did:

I asked questions of my GI specialist. Then I came home, did a thorough Google search, watched a few YouTube videos from reputable sources, and made a note of friends who have Crohn’s that I can ask questions of. I looked up a few diet recommendations, but since I’m only drinking protein shakes right now as my main food source, I bought a Crohn’s-friendly source of protein powder from Amazon to try this week to see if it helps with symptoms while all this testing is going on. Then, I let a few friends and family know what was happening.

Then, as a practice of limiting my research, I sat outside in the sun for a long time. I wrote pages and pages in my journal and, as I usually do, wrote it as a letter to God. All my fears, questions, sadness, curiosity, and angst flowed out onto the paper, and as time went by, I felt lighter.

It felt good to empty my brain, digest the information and combine it with how I felt about the information. I reminded myself that this doesn’t have to rock my world; it may just be another uphill climb until it plateaus or declines again. It’s never only uphill.

I’m grateful to God for the transforming work He is doing and has done in my life. At age 55, with 30+ years since my first diagnosis, there is no way that on my own, I would have a glimmer of hope or joy or peace or even the desire to turn to Him during these times. It is truly evidence of God’s good and loving work in my heart, mind and soul. I do wish that my body could heal, could rest, could have a longer break from pain and illness, but that seems to be my particular story, and so I accept it, again, with faith that God is doing something good in the midst of it all, that there is purpose in this. And that brings me great joy.

My prayer for you is that whatever you’re facing, whatever Saturday-circumstances-before-a-miracle that look bleak, whatever unknown future, or unanswered questions you have, you’ll be encouraged to remember that you’re not alone, God is near, and longs to give you peace.

“Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly.” –Jesus

(Matthew 11:28-30)