Walking through a Wilderness

Perhaps it would be more apt to name this blog, “resting” or “scooting” through a wilderness, but walking through a wilderness sounds better. Also it is my hope that I may be able to walk again some day and so maybe I name this blog in defiant hope.

In mid June, it became apparent my heart rate was shooting up from merely standing and 3 minute walks in my place. I remember that week, my Mom holding vigil with me from my day bed, waiting to see my family doctor to see if the POTS (Postural Orthostatic Tachycardia Syndrome) diagnosis I suspected was a reality. Two doctors confirmed my suspicion and it has been life altering. The prognosis I heard about this disease was really disheartening and I remember crying as I drove home from the doctors. With Mike Janzen’s Psalms CD playing in my car, “Still I am with you” as a refrain, even with the heartbreak, sorrow and fear, I felt a profound sense of God’s presence. I came home and cried with my Mom giving the devastating news.  I think I cried every morning for two weeks before I could get out of bed, listening to what I affectionately  call my “lament playlist”. My lament practice continues to be a daily practice for me, perhaps our hope can only be as deep as our lament as Cole Arthur Riley writes in “This Here Flesh: Spirituality, Liberation and the Stories that Make Us”.

Within a few days, I started researching walkers and within that first week, I picked up a walker from my home care job as they no longer needed it. So I started scooting around my home as sitting keeps my heart rate down a little bit. Hence I have been scooting 2.5 months now.

This is not my first experience with the wilderness. My life has been a long wilderness and I identify more with the season of Lent in the church calendar than with the other seasons.

The last 2.5 years have not been easy but I had managed to eek out a meaningful life, working  1-3 shifts a week at my beloved group home job and home care job. The rest of the time I would have to rest, essentially scheduling a rest/recovery day before/after every shift worked. It wasn’t the life I wanted, but it was better than not being able to work at all. I guess I should explain, about 2.5 years ago it was found that I have type 1 diabetes and going on insulin was a game changer, giving me mood stabilization I had never dreamed was going to be possible for me. I also realized during that time, that I needed two naps to get through the day. And so chronic fatigue has been my companion for 2.5 years.  About a 1.5 year ago, after many tests and seeing specialists, I got the formal diagnosis for Chronic Fatigue Syndrome.  There is no cure for this illness but with self management tools such as pacing, there is some hope for improvement.

So when I say I could name this blog “Resting through a wilderness”, it is literally how my days are punctuated. Do something, rest. It has taken about 30 minutes to write this blog post, and now my body is asking to lay down again and have another deep rest period.

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