A few weeks back, I went to see a new doctor. A new question had popped up on one of my questionaires that I fill out, regarding whether I had had a recent dermatologist screening. Evidently, there has been more research regarding Crohn's and a predisposition to skin cancer. I am very proactive about my health and dutifully scheduled an appointment. In the appointment, I asked a number of questions, some of which pertained to how to keep my skin from getting irritated with an upcoming ostomy, having started the conversation with "I have Crohn's and have been through the ringer" And he saw my scars as part of the exam.
His response was, "Oh, I'm sure it won't come to that."
I felt uneasy and a little upset with that response, immediately asserting that it was indeed happening and that I had a surgery date already. He didn't know anything about my case, but assumed that he would know the outcome from a few sentences and looking at my old scars? I get a similar feeling when someone gives me the overconfident kind of medical advice (there is a difference between "have you tried/heard of this?" and "you should do X," and I am meaning the latter), but this was supposed to be a medical authority, which made it worse. As I'm trying to describe it, I would say it is some kind of accidental gaslighting.
In a different but similar scenario, I've had a few people tell me that they are praying for me, specifically for a total miracle. What these people have meant in each instance is that the surgery won't even be necessary because everything has suddenly and completely been healed, whole and "normal" and healthy. I have been struggling with finding wording in why this makes me feel uncomfortable.
It's not that I think it's impossible. I believe that God can do that--reverse all the damage and the scarring overnight. I think it's possible. I just don't think it's very likely. And there is a part of me that wants to take people by the shoulders and tell them that they don't understand.
That's not the shape of my miracle.
What I pray for, what my idea of a miracle and the best-case-scenario would be looks more like this: An easy, safe drive to and from Minnesota. Things go as good as can be in the surgery itself. While I'll be understandably sore, my hospital staff has a handle on managing my pain more or less immediately. The hospital staff are amazed at how soon I am ready to go for a walk down the hallway. I am able to resume bowel movements healthfully and without discomfort. There are no itchy or tender stitches that require creative dressing for a few weeks. There is no sign of secondary infection. I don't resume my normal, unfortunate practice of returning to the hospital for a week after I've been out of it for a week. This is worth repeating: no secondary infection. I am able to stretch out those pain medication intervals soon upon arriving home and wean off of the heavy narcotics right on to over-the-counter pain killers. My skin does not get too angry around the ostomy site. No secondary infection. Seeing my doctor back home, he comments on how great I look for how recently I'd had my surgery. I receive that bill from Mayos where I am informed of what the total charges are and how my insurance covered all of it. Friends and family are surprised and pleased at how soon I am able to spend time with them again or how long I can hang out before needing to rest. The bag pretty much never leaks. Oh, and no secondary infection.
I think God can use our modern world to make miracles happen. It may not seem like it, but this surgery will be an enormous relief in a few ways, and, as a result, on some levels I am very much looking forward to it. Other people are welcome to pray for that "full" miracle, that everything is healthy and whole again, as though the last seven years never happened to my digestive system. However, I am too entrenched in this reality to hope for it. I have lived with some of these symptoms for years now, the scar tissue (which is not something that ever gets better) is so saturated around my rectum that I cannot pass something bigger than the width of a dime; this part of the body that is designed to stretch and move is stiff, narrow, and unyielding. The Seton drains, too, are not something that I would want to keep, where even dealing with another round of MRIs and taking care of them in general is not something I want to manage anymore. I have to set my goals and dreams toward something more easily attenable. And I have to keep working for them.
I don't blame anyone for wanting that "full" miracle. Again, I think it is possible and I welcome people to hope for it. But where I am at now, holding on to that kind of hope myself would destroy me.
I am as proactive as I can be--definitely on the "God helps those who helps themselves" tack for how I approach my healthcare needs. My view of normal is so skewed, and thus so is my view on an ideal situation--I remember once triumphantly telling my doctor that I only saw blood in my stool three times a week now and only figured out with his surprised stare that that still wasn't good. In the end, I'm grateful for all of your prayers. Thank you for those of you that can pray in the spaces I cannot stay in. It's important to pray what's on your heart, whatever it happens to be. I think by all of these thoughts and prayers we will find the best way we can since this means we end up covering quite a spectrum of possibility. I sincerely hope we will all be pleasantly surprised, whatever that ends up meaning. God willing, we'll see it soon.
Only 28 days away.
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