prompt or not: "it's not over"
aww ~ 4/02/14
*****
Sunday, March 30, 2014
Hubby had gone to bed at his regular hour around 9:15 pm. Before laying down he helped me undress my upper torso, carefully and gently pulling my shirt up over my head and arms and then doing the same with my bra. He placed both items of clothing on one arm of the wooden coat tree in the corner of our bedroom along with other male and female garments straddling the tree arms. From the coat tree, Hubby retrieved my purple, long, tank top night shirt. Hubby lifted my arms and gently pulled the night shirt over them and down my upper torso.
The past week had been rough physically. The weakness and pain in my limbs exhausted me. Usually I didn't ask Hubby to help me dress and undress; I push through the pain and then rest to regain strength after clothing myself...though my strength seldom felt gained. But the past few days, I was tired of pushing.
I crawled into our king size bed around 11:00 PM. I got positioned while grunting and mumbling. "Damn it," I whispered while working with my weak and painful limbs. "Okay there," I responded with a whisper. Between my whispers, I breathed deeply feeling that somehow the breaths would help me deal with the pain and weakness and give me energy and strength to get situated. Hubby stayed fast asleep to the left side of my body.
I lay on my back with my eyes closed, unable to fall asleep.
I get my shots tomorrow. What if they don't work this time? And even if they do, what do I do when the effects wear off again? What if I'm getting worse? What if the neuropathy is progressing? What if I loose functions in all my limbs?
Visions went through my head of life as an invalid; of the strain it would put on the family - the financial struggles, the emotional struggles, the mental struggles. I lived those struggles up close and personal helping care for dad when he was a quadriplegic. Day in and day out; day in and day out. I knew the details.
I can't. I can't. I can't do that to my family. If somehow, I could be put in a nursing home and be cared for, I could accept that. If it could be done without breaking us financially. But no way, no way could I put so great a burden on Hubby...to have to care for me as an invalid at home. How could we pay for me to go somewhere without losing all our savings? Maybe we could divorce on paper; that way our money would be legally separated and I'd qualify quickly for Medicaid.
My thoughts and mental images continued as I lay in bed, in the dark, eyes closed, the clock ticking toward the midnight hour.
I'd rather die than to burden Hubby and the kids with my care. I could go to another state that has right to die laws, assisted suicide. I don't like the term "suicide" for right to die. It's not suicide...it's assisted death. I have to think of it like that...not suicide, but rather death...on my terms.
What about the guilt that would lay on my family? I would have to assure them somehow that it is my decision. That I blame them in no way. But I know that wouldn't stop the guilt. Which would be worse? Them having to care for their invalid wife and mother...or me making an exit on my own terms?
What about a funeral? I have no church or even really a social group. I want my body donated to science and the rest of the remains burned. Then I'd want my ashes spread along the Appalachian Trail at Grayson Highlands, with the feral ponies, and with the tokens I buried there for Alex, the aborted life from my womb. Hubby and Son and Daughter could read one of my poems...maybe "A Child's View."
There would need to be another memorial for the family and friends that don't hike; there needs to be some sort of closure for others. Folks could come to our house, and order a pizza and share stories. Maybe some of my stories, written by my own hand could be read. It wouldn't be a big crowd; I don't have many close friends or relatives. I wouldn't want a big crowd even if I did have lots of close friends and relatives.
How cowardly Carol, to want to choose death over disability. Lots of people live with disabilities; what a coward. But I have no fight left; I'm just too tired. I don't have any fight left; I just don't.
As I lay in the dark on the right side of the king size bed, I felt literally scared. I often think in worst case scenarios because then, if I can accept those, all roads lead up from there.
How ironic that just three weeks ago I was thinking, more like daydreaming, about thru-hiking the Appalachian Trail...planning in my mind how to pack my supply boxes for Hubby to ship to me. How I'd pick up those boxes from the drop stations and then pack leftover contents and drop ship to my next stop where I'd repeat the process.
I rolled over in bed, feeling like a fish floundering as my arms flopped with my grunts as the pain would shoot through my biceps. I spooned against Hubby's backside flopping my right arm over his torso. "Hubby," I whispered through tears, "I'm scared. And I'm so sorry." I had said I'm sorry hundreds of times the past week.
Hubby awoke with those kind of guttural and sighful sounds that people make when being awoken out of sleep.
"It's okay," he gently responded. "You have nothing to be sorry about. This is important. Let me rouse myself and we'll talk a bit."
21 comments:
Boy do I understand where you are. :(
Like you, I am grateful that I have a wonderful spouse. But, there are days when I think I am just taking up space, just a burden for her to contend with. She deserves much better.
Until a person has walked in your shoes they are in no position to judge whether you are being a coward. My counselor helps me differentiate between immediate circumstance depression and me pondering do I want to continue to live this way. He talks me through the former but does not try to make me see the latter differently. Only I can determine when I no longer want to live this way.
This past week was the worst week I have had in a long, long time. Two long time planned family events have absolutely knocked the $&:() out of me. (And why I blogged so little last week) pain meds barely work, can't sleep, can't move, and I am quite depressed. I dare not burden my wife with more, so I try to slog through it. Like you, several nights I have quietly wept, wondering if I really can do this anymore.
I wish you well, Carol. I have nothing to offer you but friendship. I am glad you decided to post your story on my blog. In the midst of your suffering, it HAS made a difference for others.
Bruce
Oh Bruce...I'm so sorry to read this past week has been one of the worst you've had in a long time. I was actually wondering about that today regarding you..as I noticed you hadn't blogged much recently. While contemplating whether or not to go ahead and send my next post to you, I thought, "Well...maybe my guest series is helping fill the blogging void if Bruce is going through a hard time." ((( <3 )))
It's easy for me to send the posts for the series...since they are already written. I just copy, clean them up a bit, and send.
It sounds like you have a really good therapist. I'm not seeing one currently...but he's there if I want to call. I've seen him off and on since 2000(?)...for things other than my current situation. I do have a wonderful neurologist now...and I am deeply grateful for that.
I know people have it so much worse than I. I read their stories and I know..I know. And yet, they continue on. But, I don't think I'm one of those people; that if ever I'd be challenged with this illness to the extent that I've read about...if I could just keep going. I just don't know. Decades of chronic illness can take the fight right out of a body.
The spinal lumbar epidural and spinal cervical injections that I received on March 31 (the day after the night described in the blog entry) did bring much relief..not full, but much...and I'll take that. Yet...I know that it's not a 'cure,' but rather a band aid (with its own side effects). The band aide (even with its side effects) brings relief and rest which can help with the courage...at least for a little while. And in between, I build up hope that maybe something else will present itself. It's a cycle that keeps repeating. With each round I am able to accept the reality of my current limitations a little more...but I still daydream...and every so often get a surge of bigger hope...yet, it's tempered.
I still run my small pet sitting business...on a very limited scale. I don't walk any big dogs...actually, I walk hardly any dogs at all. Most have back yards..and the cats and birds don't need walking. Haha. ;-) Hubby helps me out some too.
Hubby and I went for a hike this past Sunday. He ended up going on ahead of me and later circling back to find me...and that's okay; I've hiked alone for years. I'm just so slow compared to pre-nerve damage days. Toward the end of the hike, I was feeling the exhaustion along with extra shooting pain in my right ankle...wondering if I bit off more than I could chew...and, at that point (I can even see the rocks where I was when I had the thought).. I thought of your trip to the ball park. And that I would finish that hike just like Bruce engaged what he loves...even though a price in pain and exhaustion is paid...knowing that there may come a time where I won't be able to push through.
Gosh...I probably sound morose. But it is what it is. And I have to be able to accept it for what it is or may become. At the same time...I hold out for some sort of hope...and at least a partial dream. Full dreams...I've about let go and accepted that they will most likely remain unfulfilled.
Well...sorry for my ramble. Thanks so much for taking the time to read and comment...and for continuing to move on the way forward.
Much love to you and yours...
~Carol
(((Carol))) Right now I think I'm angry at the universe that good people, people with integrity like you and Bruce suffer so much. :( Why do the asshole, narcissists, abusers get by just fine..??? that's probably not totally true, but there is so much I do not understand about how things work in this world.
I sure with there was something I could do for you, for Bruce...
If anything just wanting you to know I'm SO glad to call you friend.
Do your best is all you can do.
Hugz & xxoo
oops should be "I sure WISH..."
I just want to acknowledge you Bruce and Carol. Physically I'm not so bad right now. Emotionally, not so good.
April, I want to acknowledge you too as I think I read in another post your well wishes for me. I think it was you. :-) Thanks.
Aww thanks Zoe. Yeah that was me. I've read your comments and seems you suffer too. I'm at Bruce's site a LOT & I'm pretty sure I see you post there. At Bruce's site i don't use real name though.
LOL..usually anyhow.
(((hugs to you dear friend)))
<3
With hugs all around.
I think we need some s'more fixin's and a campfire...but we won't sing Kumbaya or It Only Takes a Spark...Pass It On.
How about Elton John....
Friends
Thinkering here...about these internet connections...
I met April through a Christian spiritual abuse forum...back in 2008(?), maybe. We eventually connected offline and have been best of friends since. Oh my...we shed and shared so many tears of grief and pain in those early years.
I remember when I first read Bruce online...but I can't recall where or how I found him. (Maybe April introduced me to Bruce's writing?) I do recall that because he lived in rural Ohio, I commented on his writing at the time asking if he was familiar with The Way, since The Way has Ohio roots. If I recall correctly, Bruce had only heard of them. I continued to follow and read Bruce after that.
I must have found Zoe via Bruce. I don't recall my first comment on Zoe's then blog. But I visited (& resonated with so much...and still do) as she moved about with her writings.
Ya'll (and others) have helped me to tap my authenticity..to sit with it...to acknowledge it. All through satellites. Pretty amazing...
<3
You know, I was probably on that spiritual abuse forum too. :-) Although there was another one I was on and I wasn't Zoe. Anyway, I can't remember how I found anyone.
I do remember one of the first posts Bruce wrote touched me deeply and I wept. The reason? Because he was the first pastor and to date the only pastor I ever knew who apologized. I'm not sure if Bruce was still hanging on to belief at the time or not. Can't remember. I only remember that he apologized (I can't remember for what) and I think I remember thanking him for doing so. It gave me hope that not every pastor out there was a class-A jerk. If you are reading, again Bruce, thanks.
When I came across you Carol I related to a woman who's writing drew me in, your style, your bravery, your guts! As well, your interests, animals, nature, hiking and later your suffering. I remember thinking I don't care what Carol believes . . . I like her. :-)
April (and I think I know who she is on Bruce's blog) I've been watching in comments here and there and seems like a really kind woman and clearly cares about you Carol. I did not realize that you two were very close. That's why she keeps hanging out here. ;-)
Funny you should mention *authenticity* Carol. I still feel inauthentic because in real life I still walk on eggshells to protect those who don't know or don't get it or think I'm nuts or over-reacting or should be over it all by now. I'm afraid as I age and deal with some pre-frontal cortex failure that I'm going to start telling people where to go. *sigh*
I think I'm working up another password-protected post.
If April wants in I'll let you pass the password on to her Carol. Don't twist her arm though. :-)
April would be a good addition, Zoe. I have known her for a few years now, know who she "really" is, :) and I think she would appreciate being made part of your private posts.
And thank you for the kind words. They mean a lot to me, not just saying this to be saying it...they REALLY do. Especially when I am quite depressed...oh wait that's normal. :)
Bruce
I'm actually considering putting Secular Wings into private mode now Bruce and giving out invites to read and comment there. I think I can invite up to 35 people. I can see myself maybe blogging at Old Lady Jeans publicly. Not sure yet. Got to figure out the private mode thingy first and right now I'm not the sharpest tool in the toolbox. :-)
It's difficult to feel the effects of positive comments when we're depressed eh? I'm glad you saw the comment. You know, I don't think you were totally out of the faith as I look back on it but I know you were in tune with the topic of spiritual abuse and that's probably what kept me watching you. :-)
LOL ((hugs))
Hi Zoe, Yes I would love to read your posts so I will get the pw from Carol.
I had been posting on CRF-Christian Recovery Forums for a while. I think during that time I found Bruce's site. I was so validating, I just remember thinking- "this guy GETS it!" I was touched that a man who had preached and was sold out for Jesus could have the courage to actually begin to seriously question the "faith". That is a painful thing to do and from then on I was always trying to find Bruce's site. Sometimes he would go offline... :( I'd be searching...then he'd come back. Yaay I'm NOT alone in this insanity of a life :) I'm trying to see if I remember the name of his first blog..?? Did it have to do w/ wanderings or Fallen from Grace? I can't recall. What was the name of that first one Bruce?
Anyhow, I ended up checking out another Church Abuse forum and reading what people wrote i could tell Carol was a thoughtful & kind person. Her "Way" story made my walk in fundymentalism look like a cake walk. We started PMing, then Emailing...then calling. She helped me SO much, I knew, like Bruce, she understood. I'm sure we talked almost every day for a long time. We were both messes, just total messes after leaving the cult and the repercussions of that. We helped each other.
Anyhoo, I think I told Carol this recently that it's odd that the worst thing that happened to me, being sucked into that bible cult, actually was the catalyst in which I've met some really awesome people. That's ironic. Lol.
Anyhow I'm so grateful for you Carol and Bruce and my new friend Zoe.
(((Hugs )))
Thanks Bruce.
Zoe, I would like to read your posts. I look forward to it. :)
Gee I think I go to Bruce's site every day! LOL
You know I appreciate you Bruce. I've come a long way I'm sure I was still a believer when I started going to your site those years ago. I've evolved. :)
Yes, you have come to the dark side. :)
Yes Carol I think I told you about this "guy" who is an ex-preacher. I must have emailed a link or something. But the thing that attracted me to Bruce's site is that, well, there are all kinds of "Ex" sites as far as religion. Ex-Mormon, Ex-Jehovah's Witness, Ex-Way, but because the bible cult I was in was so small and under the radar, I couldn't find anyone speaking about the going's on. Bruce was one of the first sites I found where his ex-religion sounded a whole lot like what I had been sucked into. The more I read, the more similarities I saw. So that was incredibly validating for me to read on Bruce's blog thoughts that I too had had in regards to bible religion. But I only THOUGHT those things, Bruce was actually put them down on paper...digital paper! LOL I was astounded and relieved to know that I was not alone.
The internet is AWESOME...though it keeps me from getting things done as it can be addictive. :D
LOL :)
God blessed you with a great man, Carol. My mom had a saying, "It's always darkest before the dawn." I saw how true that was on BP at Emporia. It literally IS darkest before the light of the sun starts to appear.
SP
All this is fun to read.
I don't know what I would have done without April the last however-many years. So much has transpired...things that neither of us imagined would happen. We were messes. Still are at times...but much less so. Yay!
Zoe...those eggshells. :-( If only it were as simple as sweeping a broom to collect them. All the social, relational, etc., dynamics are...well...just PTSD stuff at times. (I know you know all that.)
And thanks...for the kind words. Likewise backatcha. (I'll pass along the info to April.)
Yes...Hubby is a true treasure. Like any long term relationship...there have been high highs and low lows...and everything in between.
I wonder who came up with that saying about "darkest before the dawn."
Thanks for reading and commenting SP. <3
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