Trying to Live My Life While Awaiting Medical Answers

This post has sat, a quarter-written, in my drafts folder, for over a week now. It’s not the first time a blog post has languished, but it may be the first time that avoiding a post has scared me away from writing entirely. You see, I am in a season of waiting. Waiting for answers, waiting for comfort, waiting for surgery. Waiting for God. It is not a season I like, and it is not a season I, to be totally blunt, particularly want to write about.

If I could, I would just neatly push the delete button on this draft, let time and life happen, let this season pass by at its excruciatingly slow pace, let the answers finally come, this season finally pass and never write this post, so there would never have to be a record of this, my very least favorite type of season.

But, if you’re anything like me, this is the kind of post you probably need most, because this is probably the kind of season in your life you probably live – and dread – the most.

My life as a chronically ill person who is simultaneously a lot of other things (educator, mother, wife, family member, friend, church and community member, etc.) involves living in a lot of in-between areas.

In a previous post about chronic pain, I talked about how, if we all have a stoplight of pain – red meaning total, disabling pain that means we stop everything do, and green meaning nearly no pain – I spend most of my days on yellow. I am at “slow down”: clearly aware of my pain, but, with medication and solid coping strategies, able to go to work, parent my child and spend time with family and friends. However, that pesky pain of mine is always a constant companion and reminder.

Just like my days are spent in the yellow, in between zone of pain, much of my life is spent in another in-between zone that is less-than-pleasant: a waiting zone. There is no fast forward button. Unlike on a TV show or in a novel, most of my life takes place in the uninteresting bits.

It’s wild for me to think about, because it consumes so much of my life now, but last year at this time I didn’t even know I had Chiari malformation or Ehlers-Danlos syndrome. Life has changed in so many different ways since I got my diagnoses, but one thing that hasn’t changed is then, just like now, was a period that was fraught with the tension of waiting for medical answers.

Most people with chronic illness know the diagnosis process can be frustratingly slow. It can take months or even years to find out what is wrong with you. And sometimes, you can get an answer, and later find out it is the wrong answer (like what happened with me and being misdiagnosed with fibromyalgia).

Getting the right diagnostic labels was such a relief to me, but what I didn’t expect was that there would be new seasons of the same kind of nervous, anxious waiting once I knew what illnesses I had. No longer is the question “why do I have these horrible, crushing headaches and neurological symptoms?” the first one on my mind, sure. I know they’re owed to my Chiari malformation.

But answers aren’t treatment. I have been waiting for months to get in to finally see a specialist to find out whether or not I will need brain surgery for my Chiari.

One of the other difficult things is that one’s own acceptance journey and their medical red tape journey never seem to travel at the same speed. Chances are I would already have had the brain surgery now if it wouldn’t have been for my own anxiety and waffling over it.

But now that I’ve finally accepted that I do most likely need surgery and that the risks are worth the potential rewards, since my symptoms are so severe and continually escalating, I have to wait for my treatment schedule to be on the same page as I am emotionally. Sure, if I would have booked these appointments and done all of the legwork earlier, I could have had the surgery now, when I was emotionally ready, but I wasn’t in the place of acceptance before to take those steps to get the treatment. So it’s a challenge for sure.

I started drafting this post on a Wednesday, the day after I was released from an emergency room trip that yielded absolutely no answers. Today is Saturday, over a week later. The biggest thing that has happened in that time is that last Friday I finally was able to schedule an appointment to see a neurosurgeon specialist for my Chiari, three hours away.

If this was a TV show, we would only see the highlights, and this whole two-week period, from emergency room visit to specialist’s office, would be one episode. But this is real life, and there is life to be lived in the in-between, in the tension of not having answers or proper treatments or timelines. There are questions to be answered honestly when parents at your education job ask you how you’re doing and you have no new news to give them. There are frustrated prayers to pray when you cry out to God, begging for a little peace among the pain as you try to wait the best and most faithfully you can.

I am looking forward to Wednesday, and the appointment with my neurosurgeon, an appointment that has taken months to schedule, like it’s Christmas. But I am nervous about it too. What if it goes badly? What if they can’t help me? Or won’t? What if it makes all of this feel like I’m back at square one with treating my Chiari?

In the meantime, the best I can do is push the “what ifs” aside, pray a lot, trust God has a plan for all of this, lean on my support system and try to remember there is life to be lived in the wait. Unlike on a TV show, in real life the little moments matter. Each job shift where I get another opportunity to impact a life of a child. Each night I get to snuggle up with my daughter. Each time I get to go out on a date with my husband. These times are precious, and they deserve to be treated as such, not consumed by the worries of living in the in between.

So I wait, and I muster as much peace as God can possibly give me for the wait. The wait may be hard, but there is life – beautiful, full, worthwhile life – still to be found in it if one looks hard enough.

This post was originally published on Writer Kat.

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