Having hope in the dark

“Souls survive on hope in the absence of physical evidence. Not the naive hope that everything will be hunky-dory, exactly as life used to be, but the hope that assures us, when things seem darkest, that although it doesn’t look that way now, something else is also true, as one survivor put it to me.” – Mark Matousek, When You’re Falling, Dive


The last couple of days have been heavy. My husband and I are having conversations I never imagined and could never have prepared for.  My surgery is a week away, and after discussing my current condition with the surgeon, we are considering a partial hysterectomy: removal of the uterus and possibly the cervix.

My pain with endometriosis has been so debilitating, that fertility hasn’t been as much of a concern in comparison to my quality of life.  Uterus or not, my husband and I need to start coping with the idea that having children together may not be an option, as blood work and multiple surgeries have shown that my chances of conceiving naturally are quite low – and even at the age of twenty-five, time just isn’t on our side.

Although we don’t want to be parent’s now (or honestly, anytime soon), we are forced to make a decision about something so incredibly big, and in an incredibly unnatural way.  Attempting to figure out how we’ll feel at a point in our lives that feels very distant.

It’s so heavy.  My thoracic endometriosis feels like someone is standing on my chest much of the time – along with this, now I really feel like I can’t breathe.  As for those pain management meditations that have always helped me, it’s too bad they are centered around breathing, because with each deep breath I take there is a sharp pain in my chest to go along with it.  The point of meditation was to take my focus away from pain, but it’s just making it more noticeable lately.

So how am I dealing? I’m reading.  Specifically Mark Matousek from his book When You’re Falling, Dive.  The quote I started with in this post is something I can resonate with so much. I’ll give you a minute to read it again…

What I took away from this is that if we hold on too tightly to the idea that everything will be perfect, and exactly as it was before illness – we are simply setting ourselves up for disappointment. Once you’ve been affected by chronic pain and illness, even with regained health, there are certain things about your life that will remain changed forever.  Dealing with a trauma like this just changes you.  Studies have shown that traumatic events alter the structure of our brains, and even aspects of our personalities.  In some ways for the best – a new appreciation for life, a better capacity for empathy and understanding – the list goes on.  And in some ways negatively, of course.

I’m not suggesting that we give up or lose hope on the idea that things will improve.  I do believe our thoughts can affect the outcome of our lives.  And in some cases, things do get 100% better.

But from my experience of being let down – needing surgery after surgery, treatment after treatment, putting too many eggs in one basket, thinking that each recovery was the last stride until the finish line and i’d be completely pain-free again – I’ve learned that being hit with reality is exhausting after so many punches.

I am not settling (that’s sort of the theme of this blog, anyway) but I am working on accepting the fact that these trials may continue longer than I had originally “planned”.    I also hold onto the idea that, as the survivor put it to Matousek, something else is also true.

There is something bigger than this, and it’s waiting for me.  Whether it’s discovering the joy of adoption, making a difference in another sufferer’s life with a foundation, or even writing a book down the road, through this darkness there will absolutely come light. And when I take a second to stop overthinking my situation and trying to control it, I can see that in many ways, light is already shining.

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