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Sunday, August 4, 2013

Back on the trail?

You may be able to tell by my time between posts that my rest and regroup took a little longer than anticipated. It’s my own fault. I rushed it a bit. I don’t stop easily. As poetic as I can try to make it sound, I am terrible at the 'stop, rest and regroup'. A fellow writer living with MS commented on one of my earlier posts. She said, “I hate to spoil the surprise, but chances are you saw the sky getting darker, and even though there were a zillion rational reasons why you should have stopped...there was that one single voice that was louder than the others that said, ‘Keep going. You can do it.’ Basically you were probably hardheaded.”

By the time I read that comment I had stopped. So I said, “No, no…I am resting…but I will carry on soon!” But the truth is she was right!  The sky started to get a little dark back in early April. The weather in my nervous system was getting wild; periodic thunderstorms, random freakishly cold days that I was unprepared for and as she said a “zillion rational reasons” why I should have stopped. At least by the end of May, when my neurological weather system was regularly sending little bolts of lightening and stinging hail to visit my right leg. I did ‘pause’ every now and then. Paid a visit to physical therapy and my doctor. Emailed the neurologist. Added a little of this and a little of that to my metaphorical hiking gear and quickly got back on the trail. Life is short and there are adventures waiting!
Apparently, for me, adventures and success require that I stay in a forward momentum, hiking my mountain. And when I hit a cliff I cannot go over, I tend to look for a way around or better gear. Or a helicopter to rent.  

The doctors will say that there is no proven connection between stress and an MS exacerbation. I will tell you that there is, for me.  My diagnosis came as I started graduate school and experienced many stressors in my life.  This most recent exacerbation came at a time of craziness at work, studying every weekend for a major exam and a variety of other small stresses. Together the sum was too great. I choose to blame studying! I shall endeavor to never again put my brain through such stress!

I spent the spring hiking through many beautiful adventures, with family and friends by my side. Some days the sun would come out, the neurological storms would pause, and I could really enjoy things. But far too many of the days my head was down, eyes firmly fixed on the trail ahead. “One more step, one more step”, I would tell myself. I was not able to be fully present for much of it. One cannot enjoy the view or stop and smell the flowers when one is concentrating on staying upright. It would have been far better to have stopped and enjoyed whatever view was around me at the moment. Or to have crawled into a tent and a cozy sleeping bag to wait things out. I could have told family and friends to take some of those side trails without me.

By mid-July I was well aware that there had been significantly more bad weather than good over the past three months. I was hunkered down again, trying to decide which trail looked easier, who could carry some of my stuff, which shoes would be best and did I need a better raincoat? My hike, my life, became a series of stops and starts, awkward and jerky movements. Then the lightening struck. My leg was on fire. Electric jolts alternated with burning sensations; my leg moved of its own volition and I had no control. Enough. I called for help. But still I would not leave the hike.  "Just hook up the Solumedrol and then I’ll carry on".  Hike for three hours, sleep for three hours…and so it went for three days. While the Solumedrol IV soothed the storm inside my leg, it began to create its own weather system in the rest of my body. Flooding that pooled up in my feet, ankles and hands. Mudslides in my brain that blocked the paths to my thoughts and words. Five-minute heat waves that left me sweating in a cold chill until the next one.

After three days of this, I finally stopped. But I did not enjoy the rest. I do not like sitting. Resting. Regrouping. I do not like it. I am rest-less. I get grumpy and angry. The trail is waiting, damnit. I will NOT let this mountain beat me.  My anger and irritation built over four days (Solumedrol likes to stir the angry pot). I eased back onto the trail on day four and then I saw it. A beautiful hike with a stunning vista that my best friend and I had done many, many years ago (we are still working a metaphor here). So I bought some new boots. Literally. Some very cute new boots, and a skirt, and off we went to The Cult concert in Seattle. And I made it there and I had fun and felt good and celebrated as though I had climbed Mt. Everest! Fire Woman! I sang and danced. Ian Astbury warned me with his lyrics, “Here Comes the Rain”…but he makes the rain sound so good!
Guess what? The next day my body felt as though I had truly climbed Mt. Everest through all manner of storm. And so I found myself stopped again. Resting. Today I’m moving into the regrouping phase.  But this time I will give it the attention and time that it takes, I promise. I will look around and see what sort of scenery and view I have from this very spot. Enjoy the memories of where I have been and some of the adventures that I have been present for these last few months, because indeed there have been some, despite it all. I am reminded of a particularly steep uphill hike a couple of years ago that required me to pause and rest on a fallen log. As I caught my breath and slowed my heart, I looked around me. On this log were tiny translucent orange mushrooms, intricate and lacy moss, white and blue flowers no bigger than the tip of a pencil. It was a miniature forest. These are the things I need to get better at seeing. When I do stop and rest, I must look around for the amazing surprises that are likely right next to me and that I would have missed completely had I decided to ‘carry on’.

 It will be a couple of weeks before I feel confident heading back out on my trail in any serious way. These rest stops are also part of my journey, as important and potentially beautiful as any stunning vista. If I cannot learn to treat them as such, I will spend too much of my time on the trail focused on the stormy weather and too much energy fighting it. Then when the sun does come out I will close my eyes from exhaustion and …what? Rest?  I am working on that hardheaded voice that says, “Just keep going”! I am working on saying, “Rest. For as long as you need.”

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