9.09.2011

The Gifts in the Pain


Last time I wrote about my health, in this post, I said that in a future post I would tell you about the hidden gifts found in chronic pain & illness.

To do that, I have to go back a bit.... back to 2005 when we found our tiny family going through something we never thought we would face. At an ultrasound towards the end of the first trimester of an uneventful pregnancy, we were told there was no heartbeat.

Losing that baby has been a defining event in my life. Just like marrying Jonathan and giving birth to Hannah and Natalie, losing our {very loved, wanted, and anxiously awaited} baby helped shape the person I am today.

Miscarriage was not something I knew much about. I did not have any close friends who had been through it, my mom had not experienced it, and although I knew it was a disappointing, sad, awful thing, I had never heard of the type of miscarriage that happened to me: Missed Miscarriage, meaning that for whatever reason, a woman's body does not catch on to what has happened when the baby stops developing or dies, and does not begin the process of passing the baby.

So when we went in that day, we were happy, jovial, silly, and frankly, naive to the realities of what women go through in doctor's offices and ultrasound rooms every day.

Just moments after we were calling the baby by both names we had already chosen (one for a boy and one for a girl), we were told there would be no baby after all. No baby coming home with us the following Spring, no baby sibling for Hanny, no baby kicking soon. No baby to use the Winnie the Pooh nursery decor I had just purchased.

No baby.

I had a procedure and it was supposed to be over. My body, they said, would heal quickly and we could wait a few months and try again, have another baby.

But just days after I thought it was over, the complications began...

In a nutshell, over the course of the next few years, there were infections, antibiotics, ER visits, ultrasounds, hospital stays, surgery, bedrest, no lifting, surgery, no lying down, a new pregnancy, PAIN, a healthy delivery, PAIN, surgery, PAIN, PAIN, surgery, PAIN stretching on for days and weeks and months and (literally) years.

I have no idea how those years looked from the outside, all I can tell you is bits of how it felt from within, but even that is a blur and graphic and a mixture of joy and grief and severe daily pain that is indescribable if you have never experienced it. I've said it before and I'll probably say it again: it's amazing how much pain the human body can endure.

The gifts in the pain of those years is still a stretch to identify, but I remember how light I felt when it finally began to back off. I felt like I was flying. I could run. I could lift my daughters. I could sleep without heating pads. I could mother without medication. I could truly live.

I vividly remember how good it felt and how I knew I would never again take for granted life without pain. I remember it well because it was not long ago -- not long before I began experiencing increasing levels of pain and stiffness in my spine, neck, jaw, hips, shoulders, ribs, chest, wrist & hands, knees, ankles & feet. Not long before I was diagnosed with an autoimmune disease (a chronic disease) called Ankylosing Spondylitis. A disease that could  hunch me over and fuse (lock) my spine, a disease that could rob my ability to run, wreck my ability to walk, and devastate my ability to function daily.

It's been almost a year since I was diagnosed with AS, and some of the gifts that I had already found, thanks to experiencing deep personal loss, are firmly planted in my heart and outlook: a passionate desire to love with intention, to love well and consistently and to use my words to express that love before it is too late. I know now, and have felt all too keenly, the fragility and frailty of life. I have lost friends and classmates to car accidents, I have lost my very very dear and special Grama, completely unexpectedly and suddenly to a massive stroke at a young age. I have lost elderly and sick grandparents. But the most difficult, for me, has been the loss of a child. It's been nearly 6 years, and I still feel the hole in my heart and our family every day. It gets easier, yes, but it does not go away.

I believe one day I will hold that baby. Some days that is the only way I bear the absence of a child that was never here.

So what are the gifts?

I don't take those I love for granted.

I love with intention.

I use my words.

I use my creativity to heal.

I turn it around -- instead of asking every day, "Why am I going through this pain?" I look for the beauty around me, big or small, the overlooked things in nature, everything I can do that day, and I feel awe and wonder at it all and remember how very blessed I am to be alive; to be able to live this day.

I simplify. This was born out of my fatigue and pain levels, and serves me well as I limit what I do outside of our home so that I can better love and care for what and who is inside my home.

I slow down. This was born out of my inability to walk quickly, to stand for as long as I would like, etc... It's still hard for me, but I try to remember to take more breaks to rest, to snuggle my girls, to sit down and read to them, to make memories.

I do when I can -- When I can walk, I walk. When I can hold my girls without pain, I hold them. When I can get up early and be SuperMom, I donn my proverbial cape. I am so much more eager now to say YES! to life; to getting out in nature and being with those I love and to truly living.

So these are the gifts. They are beautiful, profound, sometimes-not-learned-until-late-in-life-or-until-it's-too-late gifts. I honestly feel very blessed to have been given them early in life, so I can better see what's important  and what's valuable and what truly matters.

These are the gifts. I hope they inspire or comfort you.

6 comments:

  1. Thank you for sharing your story with us. I know the pain of miscarriage, my heart squeezed while reading your post. I also know chronic pain - fibromyalgia, and I know exactly what you mean about doing things when you can. Your words are comforting and inspirational.

    Much love,

    Jennifer

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  2. I'm so grateful for your blog - and most especially for you :) There are gifts in the pain - even if they are hard to find, when you do, well those gifts are the most precious I think.

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  3. "It gets easier, yes, but it does not go away." This is so true of any true loss. You've described it all very well. I remember those years of yours as a blur of fear for you, never knowing when the next pain and surgery might strike. Thank you for sharing the things you've learned! Love you, Wendy

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  4. This, my friend, was a much needed read for me. hugs and prayers. Elizabeth

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  5. Oh, I am SO GLAD I found your blog. I'm thinking of Sara today and hoping I can inspire others the way she has, DOES. I don't have Ankylosing Spondylitis, but I do have a disease that affects 500 in the U.S. called Cystinosis. I related to so many of the things you said, when you don't have health you appreciate the beauty in the world more I think. It sort of forces you to. There have only been a few other women in the world with my disease to have children, and I joined that small group 19 months ago. I soak up every second with my daughter and live in the now...because really, that is all we can do.

    Thank you so much for your words.
    xo.

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  6. Hi Jennifer,

    Thank you so much for sharing your heart, your perspective, and the gifts that come in the pain. I'm so glad to have "met" you and found your blog.

    Rachel

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