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Tuesday, May 13, 2014

I sing as I walk and walk and walk...

Growing up I often sang a song at church in the children's Sunday school about pioneer children and their experiences crossing the vast expanse of the American West. The chorus of the song declares that they "sang as they walked and walked and walked and walked and walked." A lot of walking. This song has been on repeat in my mind recently.

I've felt over the past weeks and months as though I, too, am making a seemingly endless trek. Each day requires effort and perseverance. The progress is slow and painstaking, often so slow that it isn't even noticeable. So, on occasion, I force myself to stop walking and look back, measure the progress I've made, the hills I've conquered, the valleys I've climbed out of.
  • After plenty of doctor's visits, adjustments to treatments (both medicinal and otherwise), the various symptoms of this disease, joint pain being but one, are showing noticeable improvement. We have found the approach that is working for me. Adjustments will have to be continually made over the years ahead, but we're making tremendous strides.
  • I no longer need my pain medication on a daily basis. I can type for a full fifteen minutes at a time before my fingers give out, whereas I couldn't manage to type at all only a few weeks ago. I walk with less of a limp. I don't drop things as often. Though things aren't perfect they're so much better.
  • My body, taxed as it is, continues to hold its own. I am recovering nicely from a recent bout with pneumonia. Some complicating health issues that I deal with are holding steady, a blessing for which I am daily grateful.
  • I am still writing, though much slower than before. I don't know what my publishing future will look like (what writer does, really?), but I am enjoying being able to write again regardless.
  • I've been healthy enough to give back to friends who have supported me through my struggles. I am part of the Altered Perceptions anthology to benefit the amazing Robison Wells and to help his family through some very difficult times. There is something very healing in being able to serve others when you, yourself, have needed the help of so many.
The journey is long and isn't at all over. With a chronic illness the journey is never over. But I've come pretty far. And through these struggles I've found that gratitude and perspective is what gives us the strength to sing as we walk and walk and walk and walk.

Thursday, April 3, 2014

Unseen Wounds

Fifteen months have passed since the day I woke up in excruciating pain, pain that has yet to fully subside. In the months since Rheumatoid Arthritis became a now permanent part of my life I have seen progress and setbacks, relief and frustration. Last week, various issues led my doctors and I to change my treatment regimen to an entirely self-injected one.

There are few things in the world I am irrationally afraid of. Spiders. Airplane takeoffs and landings. And needles.

I distracted myself as much as possible with gathering injection supplies, placing pharmacy orders. All the while in the back of my mind loomed the realization that once the medications arrived, I would have to face a lifetime of needles. Needles.

Though it’s embarrassing to admit, the prospect scared the living daylights out of me. I knew the injections wouldn’t really be that bad. I knew there were people who gave themselves more injections, harder injections, etc., and that I’d quickly grow accustomed to jabbing myself. But it’s called an “irrational” fear for a reason.

From a treatment perspective, it was a necessary and helpful step, but I struggled with it. I struggled with it because it was yet another change. There have been so many. So very, very many. I went through my vials and syringes and, without warning, had to brush away tears. To my husband, I whispered, “How did my life turn into this?” The shots, themselves, weren’t the thing I wrestled with most, but what the needles represented: a life I’d planned for and imagined that had slipped away from me.

The day arrived when I had to start giving myself my new shots. I soldiered through it, though my hands shook and my heart raced. The needles went in, as did the medication. I slapped bandages on as needed. Being new to this, my site choice was bad. My injections all go in the abdomen and I put every last one of them right where the waistband of my pants rubbed against them the rest of the day. It was a constant reminder of all that had changed over the past year, an aching of which I was acutely aware, but which was hidden from everyone else.

As I went about my day, I pasted a smile on my face and did my utmost to pretend nothing was different, to pretend I wasn’t an emotional wreck, to act as though I wasn’t hurting and exhausted. So no one knew. No one knew I was one sharp, unkind word away from breaking. No one knew how desperately I needed a friendly smile. No one knew how much I was struggling to look as though everything was perfectly fine.

And that got me thinking about hidden wounds. Every person we encounter, every single one, carries around with them aches and scars that no one ever sees. Their hearts are often heavy and their shoulders may very well be drooping with the weight of worries. But we don’t see those burdens. They are tucked away, but no less real. We sometimes forget the very possibility that those around us have troubles and worries and problems we can’t always see.

I’m growing more accustomed to the injections and the necessity of needles in my life, just as I’ve grown accustomed to pain that doesn’t go away even when I sleep, that slips into my dreams at night, just as I’ve accepted the necessity of compression gloves and claw-foot canes, just as I am struggling to accept that life with a debilitating illness is my new and from-now-on normal. It is a wound I carry every day, one that aches and rips at my emotions, an ache that few people are permitted to see in its entirety. But it is there. I am hopeful and optimistic. I'm not crushed by my struggles, but the wounds are there.

 Susan Evans McCloud penned the words,
“In the quiet heart is hidden sorrow that the eye can’t see.”

The last fifteen months have taught me many things, but among the most important is this... We can never know the extent of the burdens carried by those around us. We don’t see their hidden sorrow. Our judgmental and unkind words may very well be salt on an already tender wound. Our patient kindness may very well be the soothing balm they secretly need.
Be kind.
Be loving.
Be gentle.