Off the Grid

This last week was a really difficult one. Coming to grips with the hard realities of Dad’s condition, of  trying to find something to relieve his pain, of conversations with social workers and doctors that I really don’t want to have –as mentally prepared as I am, I have been knocked out by the emotional turmoil all of this has led to. Why, I’m not exactly sure, but that’s what happened.

I couldn’t manage to do more than work around the house a bit, trying to catch up with laundry, and visiting Dad and having some of those conversations. The one with my Dad’s sister was a killer–she initiated the conversation, and I honored her straightforward questions.  By the end of that conversation we were both choked up and holding back tears.

I read a lot. I watched television. I cuddled with my dogs that I’d finally brought back from Lake Charles.

But no matter what, I couldn’t write.  I just managed to get along from day to day. By Friday, when I got to Lake Charles, it was a weekend for simply closing the door and being alone. A few errands, getting my medicines refilled, and getting a long massage on Saturday–that’s what I could manage.  It was Sunday before I found energy to get out and visit friends.  Many times, my Lake Charles days are more social, but lately they are hibernation time for me to recharge.

This time, it really was more like the end of a hibernation. By the time I got out on Sunday, I felt lighter and realized that the world wasn’t weighing me down as much.  The sun was brighter.  I enjoyed long visits with friends yesterday. Some corner was turned, I think; something simply changed.

Today, I am in Orange, getting Dad’s truck inspected. How he has managed to have it registered in Texas is beyond me, but I now sit in a waiting room while it gets its inspection a month early. And I turned the radio on as I drove over, finding music I loved–Stevie Nicks, Tom Petty. I sang along as I drove, even chair dancing a bit.

And once I opened the blog, I found the words that have evaded me for a week. Sunshine, light, and flow have returned to me.

One of my worries has been my own sense of separation from friends as I have been more and more involved in Egan over the last 10 months.  One dear friend told me yesterday that she had only recently told her father I had moved–and that only then did she realize the truth of that. I’d realized it and vocalized it months ago.  In the intervening months, I’ve felt more and more disconnected from that “other life,” and recently even wondered why I bothered to go to Lake Charles, except to pick up mail and see the pets.  But now I’ve got the dogs at least, if not the cats.

The disconnect will be temporary, I’m sure.  My friends remain my friends.  Picking up the pieces will happen.  Certainly my life will change, but it’s not that I’ve lost myself, though that is really what I fear at times.  No, I think I’m really discovering myself on this journey.

I now start to think about what comes next–and what comes after.  Kay and I talk about that. We don’t have any illusions about what’s coming.

From time to time I am sure I will “go to ground,” as the British say–hibernating for rest and rehabilitation. That will recharge me as the weekends do.

My cousin Mike laughingly asked me yesterdayif I’d “gone off the grid”– and that was the perfect term for me this past week. Off the grid.

But I am back on now, and ready to hit the road, just as soon as the truck inspection is done.

From Louisiana to Texas and back in one day. Lake Charles to Egan. My bifurcated life continues, and at least I can drive from part to part, even if those discrete parts don’t seem to overlap much anymore.

Today when I get back, there are more questions to ask, more changes to follow up on regarding the Duragesic pain patches that didn’t work for Dad.  I hope we find something that a) doesn’t make him itch and b) doesn’t leave him confused and c) relieves the pain.

A friend lost his brother to cancer last week, and we’ve talked often in the days before and since.  That also saddened me, for him and because it brought back my loss of my brother in 1996.  Phil was 39 when he died. Yesterday was his birthday–he would have been 56.  I’m sure that’s been one of the facets of my week of darkness.

Loss has come close to overwhelming me this week, but it didn’t.

I went off the grid, finding and creating my own energy, the energy that cannot come from outside sources. Not at all–only from inside does the energy generate.  The love from family and friends gives the support I need to explore the hard realities and to do what must be done, but only when I can have some deep alone time, off the grid, does the energy come.

I am back on the grid, waiting now for the truck to be returned to me with the appropriate sticker. Someone has to do the ordinary chores, the daily or monthly or yearly ones.

I am ready for the road.

Later on Monday, about 7:22 p.m.:

Back in Egan, after the road trip.  One of the last songs I sang along with as I exited Interstate 10 heading to Southwind was “Here Comes the Sun.”  The Beatles sang to me at just the right moment, reminding me of the sunshine and the light I’ve found again.  I needed that boost, too.

I visited Dad for a few hours, but it was difficult.  He’s apparently allergic to the Duragesic patch, and though we’ve taken the patch off, it will take a while for the narcotic to work out of his system.  He’s on a new painkiller, by mouth.  He’s more confused, not really sure of where he is, though he knows me.  He’s miserable.  The word he used with Kay this weekend is “torture”:  that’s what the pain is like, he says.

No answers today from doctors, though the hard question has been posed to both the nephrologist and Dad’s primary care physician:  is it time to stop dialysis and to take him home?

Maybe tomorrow I’ll know more.  What I can do now and tomorrow is try to get the house in better shape.  Tomorrow my friend Pattie is coming to help.  My cousin Carolyn is coming to spend the night tomorrow and see Dad.  I suspect others will come soon too.  So I’ll wash more clothes, move some boxes, and cook something to eat.  I’ll talk to cousins and aunts more today and tomorrow, keeping them all in the loop that is our family connection.  It’s tight and real and wonderful.  Friends and family give me everything they can.  It is so comforting to know they’re there.

Our loss looms closer than before.  But more important is Dad’s comfort, Dad’s ease, and Dad’s dignity.  He’s earned all of those things.

Back on the grid.  Back with power.  Back with resolve. Back with love.

Categories: Uncategorized | 4 Comments

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4 thoughts on “Off the Grid

  1. Rita Pourteau

    Chery, there are no real words of comfort for a time like this. But know that you and your dad are in my prayers and that one day this will be over for both of you. It will be hard, but you will go on and you will find that you have changed–become more than you were before. And one day you might be sharing your pain and your understanding with someone else who needs you.


  2. cindy grappe

    Cheryl, My prayers and thoughts are with you and Kay, talked to her this evening. I know these decisions are so difficult, and there are no easy answers. I Love you all so much and will continue to pray for the Ware clan. what I pray for my own dear Daddy is Lord, please dont let him suffer, this I will pray for your Daddy too. Always and always, Cindy

    • Cindy, that’s what is exactly in my thoughts–that Dad be free from pain. You are so much part of the family–love y’all!

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