After learning how to do so, I turned off the notifications for the dysautnomia group in my newsfeed. That way, I can only look at them when I am ... ready to do so.
I find it comforting, in a way, reading posts that could be my life, seeing just how many others struggle with the same bodily suffering. And I have actually learned a few things, most particularly discovering a resource of medications, both prescription and herbal, that have helped folk with dysautnomia that is physician reviewed.
Since treatment of dysautonomis via medication is primarily off-label use (finding drugs that have side effects that mitigate or diminish symptoms), there is no one-size-fits-all treatment. What helps me will not necessarily help others. What helps others will not necessarily help me. For example, many people with dysautomia take SSRIs to treat symptoms, but I cannot tolerate them. Their side effects greatly diminish my already poor quality of life. Many also take beta blockers, but those are rather dangerous for me because of the wild swings in my blood pressure. And I have been taking theophylline for years, but many cannot tolerate it at all.
The suggestion I found was to take standardized Butcher's Broom to help with the swelling and pain in my legs. I emailed the integrative medicine specialist and then, after the okay, ordered some to try.
For those two reasons, I am glad that I took the step to get back on Facebook and join the support group.
Why, then, block the posts in my feed?
I have been staggered and ... humbled ... and saddened ... by the abject despondency that is often posted in the group. So much fear. So much darkness. So much hopelessness. So much helplessness. So much loneliness. The cries, the desperate pleas for help are heart wrenching. Quite frequent are posts from people clinging to the end of their rope, telling the world they are losing their grip. All I could think was: "Lord, have mercy. Christ, have mercy. Lord, have mercy."
And that is problematic for me.
Yes, the posts are, which is why I figured out how to not have them appear on my feed. What I mean is the prayer that came to my lips, reading post after post.
I want to write about faith, but each time I try to speak about it, I get no where. From where I stand, I get no where, even if others might think I am being heard. If I truly was, the words spoken back to me would be different, I believe.
I have never understood church membership and it was never required as an evangelical. While I understand the need for closed communion, I do not understand the need for vows and membership as I have experienced it as a Lutheran. And I will say that I was more of a "member" of churches as evangelicals than I ever have been as a Lutheran. That said, I requested (with help) and received a release from membership at my church, having, to me, never been much of a member or a part of the body of Christ, or any of those things.
I wanted to no longer receive the many requests for donations that I receive. Each one felt like pressure and pressure is not something I handle well these days. I wanted, more importantly, to no longer have an official ... public ... record of a vow I never understood and feel is dishonest. And, given that I do now know about my faith, I did not want to be dishonest in membership.
Without knowing what I did, my counselor has said that it is important for me to go back to the beginning so that I can learn the things that I miss. I cannot fathom how it is that I can go back to the beginning and learn what it means to trust. But, to me, undoing the membership was a way of my going back to the beginning. Even if no one understands that.
What is faith?
I honestly wonder, much of the time, now, if the sky is really blue. Or do I think it is blue because someone told me it is blue and I just followed along because that is what you are supposed to do. Not because it is my favorite color, but I know that leaves are really green because I vaguely remember the process of chlorophyll. I do not remember anything about why the sky might be blue.
From a very young age, I learned: Shut up. Be still. Wait until it is over. And I learned: Do not tell. I learned wrong things and obeyed wrong ... instruction/teaching/modeling (??). When I finally got to go to church, a few years after first hearing the Word at a summer camp, I was found by a pedophile. By that I mean, it was not long after becoming a choir member that I found myself trapped in a room with a man who had other ideas than practicing our parts. I told. Nothing happened. That's the way being hurt was for me.
For a very long while now, I have doubted that I have faith. Primarily, this is because, when writhing on the bathroom floor, I am not crying out to God for help. I whimper, to be sure. Sometimes I wail, but not usually because wailing would take more energy than I have in those moments (hours). I do not expect aid or rescue or healing. I expect life to continue as it has since being diagnosed, first with MS and now with Dysautnomia. Actually, I think it was the first ER visit with asthma, when I didn't even know I had gotten asthma (or that adults could get it) that I became resigned to being ill. Asthma, arthritis, reactive hypoglycemia, hypothyroidism, and Reynaud's. Those last three are a function of dysautonomia. I do not know about the arthritis. Asthma ... well, Northern Virginia is an epicenter for adult onset asthma. I blame locale for that one.
What is faith?
I wrote a while ago about my word book. When I was in graduate school, reading hundreds of children's and young adult books for my classes, I realized just how many words I skipped because the only meaning I knew was what I could glean from the surrounding text. I could not define them for you, such as with the word "alacrity." That is a common word in fantasy. I have come to suspect some fantasy writers have their own dictionaries of words-that-must-be-used, such as "ablutions." The latter is actually a ritual washing, but is used in stories in lieu of simply saying "washed up" or "cleaned up." "After morning ablutions"... instead of "after getting ready for the day..." The former means eager willingness. Many folk do things with alacrity in fantasy books.
I started keeping sticky notes on the covers of my books, writing down every word I could not actually define. I later looked them up and then recorded them in my word book, a blank journal. Obviously, my vocabulary improved.
Encountering Lutheran doctrine, which I still believe to be a true exposition of the Word of God, I realized that there were far too many words in Lutheranism that simply do not mean the same in mainline evangelicalism. That was a real problem for me. [It still is.] I blogged about it. I talked about it. I tried to say that I was beginning to realize that I do not know what it means to have faith. Or what it means to believe. [I think those are two different things.]
What I can ferret of believe is to fear and love and trust God. Well, I do not love and I do not trust. Not really. That is my dirty little secret. Deep inside me is emptiness. An absence. And I do not mean the proverbial hole that God fills when you become a Christian. Maybe what I am speaking of is just another facet of disassociation. I do not know. But if you tell me that surely I love Amos, that I do love, I will most likely scream in frustration, if not reach for the nearest pillow to chunk at you.
I do not know if I love Amos. And, frankly, loving an animal is so absolutely not the same thing as loving a person or loving God. At least I cannot see how that can be.
Fear God? Yes, well, I've got that one down pat. Trust Him, trust in His provision? I do not. I do not have another God (I'm sure others would argue with me on that one), but I am not trusting myself or something else. I am ... paralyzed ... just going through the motions of existence ... not knowing what will come next.
I am a thinking person. My goodness, I have three college degrees, two of them graduate ones. I earned my Ph.D. in less than three years, taking 50 graduate credits in a single year. I love studying. And because I love studying, I did a whole heck of a lot of studying of the Book of Concord. The one part of it that I cannot escape is the teaching that a knowledge of history is not faith. From where I stand, I have a solid argument for a knowledge of history but a decided lack of evidence for faith.
What do I believe?
Well, that is complicated. This is especially true because I received some harmful false teaching by a Lutheran pastor and it is near impossible for me to un-hear his words. I am so confused I do not know which way is up or down or right or left. What is before me? What is behind me? Couple that with my neurological problems with being oriented to time and place and my cognitive dysfunction and you have a recipe for spiritual disaster ... if you ask me.
Be it unfair or not, I happen to think the questions I have tried and tried to ask, were I a child, would have been answered or addressed differently. Granted, I acknowledge that some answers have been given and I have said they helped ... but they did not remain with me nor did they stave off the certitude I have about the fact that I do not love and I do not trust.
As for the latter, I have very good reason. From personal to professional to medical. I have been mistreated and lied to by people in authority and I have trusted, in my clumsy fashion, the wrong people. My track record stinks. But more importantly, I think the counselor would say that I have no foundation for trust or love. And that is my real problem.
In the past six months or so, I have had epiphany after epiphany and I just do not know what to do with those thoughts. I admit that I have been profoundly hurt by the response to my wanting to be released from membership. I was not prepared for that. However, I just cannot see how membership fits with salvation.
What I also need is to not hear what I would call spiritual platitudes:
- It's okay if you do not think you have faith because I know you do.
- It is in times like this that you can lean on the confidence of Jesus Your Savior.
- You do not have to understand to believe.
- Stop naval-gazing. [I think this is particularly dismissive of the doubter.]
- You are trying to put your faith in faith instead of Jesus. [No! You are not hearing me!!]
- We all doubt at times; this will pass.
Actually, I stink at remembering and looking up emails is too painful for me, but perhaps those make my point.
The truth is that I worry that I am a psychopath, so cold is my heart of hearts (whatever that is). I have actually taken three different tests for that (online), but ranking low on them is not enough for me. I want to understand how it can be that I am so cold inside and not be a psychopath. My counselor said that a psychopath would not worry about being a psychopath (just as I heard that if I worry about having faith is evidence of faith). I practically yelled at her that that is not enough for me. What are the diagnostic criteria? If I do not meet them, then why am I a block of ice?
I have been deeply worried about having either a heart attack or a stroke or both. I still am, to be honest, but I worried to a much less degree than I was. Now, it is just a niggle that looms a bit larger in times of blood pressure and heart rate swings. It was not my cardiologist who eased my fear. Or there it was not only him. He used words that I did not understand. He repeated them to me several times because I kept asking about a stroke, well, I asked sideways by telling him how worried I am about my wide pulse pressure (the difference between your systolic and diastolic pressure numbers). Standard is 40 (such as 120/80). I am often at 70 and have been as high as 92. I feel physically wretched when my pulse pressure widens and I become very, very, very afraid.
It was not until I found that video on the autonomic nervous system that I finally began to grasp what the cardiologist was telling me. I have reactionary wide pulse pressure. Physical stress causes my systolic to rise whilst my diastolic pressure is being suppressed. That is one way in which my autonomic nervous system is malfunctioning. Stroke with wide pulse pressure most often occurs with permanent wide pulse pressure, not the periodic reactionary wild pulse pressure that I experience. Given that I also experience very narrow pulse pressure it is easier to see that it is my nerves that are driving the problem, not my cardiac system itself.
I had to watch the video many times to grasp the bulk of the information. I forget a lot of it, actually. But I do remember that the vegas nerve runs the length of my spine and connects the brain to every single organ (all my viscera). Its failing, understandably, has a profound effect on my health and well-being.
If only there were a video about faith.
So, I have cringed when folk keep asking me to pray for them and for their family and friends because I stopped praying. I still ... well ... talk to (or is it at) God, but I do not ... petition. I do not know if I should ... or can. A lot of things about my house have been triggers for my upsettedness about faith. I removed them or moved them out of sight. I stopped taking the Lord's Supper because I never received a clear answer as to what is the harm that can be taken in the Lord's Supper. To me, doubt seems pretty harmful when it comes to the reception of the Lord's Supper. I just don't want any more pretending about faith.
When I stopped, I honestly thought I would eventually learn what I needed to learn. But I did not. And the further away from the last time I had the Lord's Supper the more confused I have become.
I was listening to sermons, but I cannot find where the ones I was listening to are being posted now. And, frankly, the whole world of "podcasts" seems Greek to me. I read two pastor's sermons. However, reading is oft difficult for me. It struck me, recently just how much I re-read. I mean, when watching things online or streaming them, I usually seek out the recap or synopsis to help me follow the show/movie. I recently tried to edit a book for a friend and just couldn't follow it. I struggled with comprehending it page by page, as well as from beginning to end. It is grievous to me to realize this latest loss. I alto think it is a hindrance to finding the teaching I need. Often, even emails are confusing to me. SIGH.
So, well, all of that is to say that I am a bit ... discombobulated ... at my response to the agony of body and mind and spirit I see in the dysautnomia support group posts. It is an overwhelming, devastating, constantly changing illness. It makes for a very, very, very poor quality of life. I thought of something the other day: Fainting to me is like sneezing to you. Chew on that for a while. It is heartbreaking to see such misery and such bald pleas for help. Yes, you can write words of encouragement and offer advice where asked. But ... really ... Lord, have mercy. Christ, have mercy. Lord, have mercy. is what is most needful.
I just do not know what to do having found such a prayer on my lips.
And.
Why do I not make the same pleas for help? Why do I not feel or experience the same depth of hopelessness? I found myself searching for a post describing what it is like to be on the bathroom floor and did not find it. So far, I have found the symptoms and the suffering I face, but I have not found what I feel or what I think. Is that because I do not actually know what I feel or what I think? Or is it because there is hope in me somewhere that I cannot even recognize?
SIGH.
For those who are battling the un-winnable war in their bodies that is dysautnomia ... Lord, have mercy. Christ, have mercy. Lord, have mercy. I cannot tell you that there is hope in Jesus, because I simply do not know what that is supposed to mean. But I can say that the source, the font of all mercy is the triune God.
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