The way my mind, challenged by constant, chronic central pain, works is this:
For most of the time, I hurt in such a deep way, it's nothing I can push past or ignore or even put a nice face on.
But, sometimes, the meds kick in just right and I get a few moments of "no pain." Like today.
I've sure been suffering since getting home from California. I'm not sure I can ever make that trip again. But, this afternoon, my pain meds seemed to be working for about 15 minutes.
When they did, my mind filled with things I'd like to do around the house, but I know enough not to start anything. I know this is a small window of opportunity and I don't want to drag out a bunch of stuff only to feel too poorly to put it all away.
I happened to remember a business I saw advertised down in central Oregon called "Cowgirl Cash." This woman bought and sold used cowboy boots and clothes and such. I remembered all the incredibly beautiful cowgirl shirts hanging in my closet...the ones I used to wear on stage back when I performed cowboy poetry around the West. I thought of the money I could raise selling these colorful, embroidered shirts.
I then looked into the closet and reasoned that I ought to try on the shirts to see if they fit me in any sense. Perhaps I'd wear them again somewhere, if so.
I started trying on shirts and was so happy to see that they all did fit, though some were sure tighter than I'd have liked. If I were to lose a few pounds...and if I were to have surgery one day and were to see improvement, maybe...well, maybe I would dare to think about returning to the stage again. You see, my level of pain was masked enough to allow those fleeting thoughts to cross my mind. Returning to the stage is something I never allow myself to think about, but today, I did.
But only for a few minutes. Then, the deeply seated physical pain came back and the incredible weakness, and it wasn't hard for me to lay that idea aside.
But, I'm still hanging onto the shirts.
While I was in California, I constantly thought about visiting the ranch where we'd lived and where my old horse, Shadow, still abides. He'd be 18 now. And I was only 13miles away.
But, I also imagined how bad I'd hurt (physically) IF the sight of my old friend caused me to cry really hard. Since that was not hard to imagine happening, I did not allow myself to entertain the idea of going to see him.
As if to affirm my reasoning, while I was there I received an email from the owners of the ranch, and who now own Shadow. They did not know I was in CA that weekend, and had sent me several pictures of him and his owner, with notes about the training they are doing together. Those wounds are somewhat fresh yet. What a silly child I can be, unable to get over this grief of losing horses, and that one Paint horse in particular.
Wednesday this week, I go see the new NSG. I guess I mentioned this yesterday. I do have hopes that this doctor will be able to help me, even if he IS the 6th NSG I have seen.
Some words rolled off my tongue this evening as I spoke to my husband, words I had not said before. I told him of my hopes to become "better" due to something (anything) this neurosurgeon has to offer, because, "It's not going to get better on its own. I know that now. It's been 5 and a half years. Things are simply not going to get better unless something is done."
Today, I had another "autonomic dysreflexia" event. They come every day. I think what prompted this one was the fact that I was wearing sweat pants. All day, I suffered through up-and-down temperature changes. I was either chilled or sweaty all day, putting on a jacket inside the house, or peeling it off in a rush.
I think it was during one of the "over-heated" times that I felt that burning crawl up the back of my neck, the burning "scalp crawl" that seems to set my head on fire, especially over my ears and on the back of the head. The skin on my head felt tight, and I was awash in that familiar weakness and I simply could not stand any clothing on.
By the time I'd peeled off the hot clothing and put on a tank top and shorts and turned on the fan in the office and gotten the BP monitor out of the closet and turned it on and got the cuff on, pumped up the cuff, etc, the reading was down to 130/109. I know it had to have been higher before I took the reading and was on its way back down.
Today, as every day, the swallowing is a tough issue. It is all getting worse. I'm praying for help, an SOS sent from a lonely island.
Yet, as I write this, I am so blessed because my frame of mind is good. I know my blessings, and I know they are so many. I do have an inner peace and happiness and am so thankful that I am not also battling depression.
However, at the same time I write this, I also must be truthful and say that at the times when the pain is the worst, at those times I do hope for the relief and release of death. I'm ready to go. I will not cause it to happen. That is all up to God. Oh, what joy to not fear death. To not be controlled in any way by a fear like that. Definitely, there were times in my life when I did own that fear. But not anymore. And that is a big, big gift in itself.
What an oxymoron I am! What a spiritual conundrum! How can one hurt so much that she wishes for death, yet still be able to say with all honesty and openness that she is not depressed and loves her life? I honestly did not have any comprehension that something like that is possible, never before in my life. But I do now.
and I speak of it here so that you can understand for yourself about loved ones you may know who are the same way...or perhaps yourself. I take no credit for it, it's just a frame of mind and a way of LIFE that came to me NOT of my doing, it's a gift given from God and perhaps that is what is meant when He said, "yea, though I walk through the valley of the shadow of death, I fear no evil, for thou art with me."
when you have your feet planted on the firm foundation of Jesus and you know what comes after this life, it kinda does some neat stuff in your mind and psyche. It all might not make sense to the human-ness of the world, but it makes perfect sense in a Godly way.
Pardon me for working through this as I write. I think I've figured it all out.
It all seems sort of confusing, yet now I've centered on what it is. The Spirit of God through Jesus has long ago been my companion. So, my days are filled with Him and all that He has taught me over these last 30 years.
Momentarily, when during the course of a day I am overcome with a pain so central and deep that I am consumed, I do not curse Him, but I give myself to Him. I yield to the promise of His Gift, the promise He will never leave me, nor forsake me.
How do earthly words describe spiritual, heavenly things? There are these things we cannot understand nor comprehend until we walk down that path. How do you describe the feeling of love, the sensation of love that you have for another human being? Is it even possible, even though the poets have struggled since time began to do so? Better lyricists than I have tried to capture the essence of His Spirit, His Peace.
So, I hope you can "see" what I am trying to write. That, in spite of physical pain or so many stories of grieving, still the sunshine of God's Love makes so many moments in my days beautiful.
It may not make much sense, but it is the way the mind works.