[In responding to a post on Dr. Richard Beck's blog (Experimental Theology) the other day I tried to insert italics. I assume this constitutes a use of HTML, and as such formatted out into one lump. I dislike the final form, and since I have some measure of control here, am compelled to see my post in its proper form.]
The topic is the "slavery of death", and the issue is (as best I can tell) that human "sin" is a result of our need to avoid death. I freely admit I may be wrong in this interpretation. Anyway, this is the way my recent post should have appeared:
I wonder how many of these learned writers did any interviews with Americans who were born into families with severe genetic diseases? To live one's only life as profoundly unable to ever be healthy as most normal folks understand? When each day of your life is lived on the brink of death you have a completely different view of many things, death being not the least of these. We know from birth that the world is "awful", and unfair at a level few can imagine. That's why we run so fast from those who insist otherwise, be they secular or religious. And we understand our limits even as small children, which is why we are immune to the "American Dream" hokum.
It is not without Herculean effort that any of us are able to achieve material comfort, and I thank God every day for what coziness I have been able to find in my American home and town. A glass of clean drinking water straight from the tap is worth every penny of my taxes. "Success"? Sitting with my wife and a happy dog by a warm fire are not an escape -- they are the essence of what motivates me out of bed each morning. I understand that "this too shall pass". I also know that "escape" for me is freedom from ever-present pain. In this sense I have spent my entire life looking forward to my own death.
All human beings are subject to disease and death, but not all start life as cursed and deformed. It is one thing to speculate about "original sin". It is quite another to gaze down at a twisted baby and know what lies ahead for that child in a very real world. It is impossible for those who are not so created to imagine how such a start can severely impact your world-view from birth. And then, in addition to watching as your family members hurt, struggle, and die, viewing your own future, to be ostracized by secular society and those rose-tinted church folk -- you must craft what life you can for yourself in a culture which ignores, denies, and blames.
The hardest thing in life is not finding freedom from the fear of death....it is being able to locate hope.
Sam,
ReplyDeleteI've lurked at Dr. Beck's ET blog for a while, and I almost posted a reply to your comment/post there, but decided against it. Since you re-posted here, I though I'd go ahead an put my $0.02 in here.
My son and I share type-1 diabetes, he diagnosed at age 5 and me diagnosed at age 36. As such we share your more chronic perspective on Death; and I agree that perspective is not shared with hardly anyone else, within the church or without.
Sam, thank you for articulating so well what I can only seem to feel. While the diabetes my son and I deal with seems to be more manageable and less "severe" than the disability and pain you describe here, the proximity of Death, and Its daily place in our lives is every bit as palpable. Death lurks at every turn, at every missed insulin dose and every goodnight kiss.
Staving off death is daily. Survival is daily. Not unlike those living in the third world who daily die for a crust to eat or an aspirin to cool the fever, each moment from the time we wake to the time we close our eyes involves a decision to live or die.
The turn of events surrounding my son's and my diagnoses (within year of each other) has been the end of faith for me, or at least the "faith" I had to that point; perhaps a new one will come along. Not surprisingly, the curt discussions of sin, salvation, heaven/hell, victory over death, submission, and discipleship ring very hollow. To let go and let God is to literally lay down and die. No amount of prayer or oil-anointing will bring healing. I experienced a little bit of hell watching my son realize diabetes was forever. It is hard to rejoice in sufferings when you cannot think straight because your brain is starved for fuel.
It's very hard to be "spiritual" when the physical and material demands so much attention. Then, to be blamed for your lack of spirituality, to be condemned for what you must do to survive... it's not longer worth it to continue the game. So I walk away.
I had to admit Death wins in the end, and all I can hope to do is to share the load with each other and try to make our lives a little more love-filled, so far as that is possible.
Justin,
ReplyDeleteFirst, let me assure you that I understand your situation. And I can tell from what you say that you realize that there is a reorientation of priorities for people facing serious illness.
Secondly, I am sorry about you and your son. There is some hope for folks with DM (Type-I), in that researchers are closing in now on several cures. Is it possible to live to age 36 without any pancreas? Or did yours suddenly completely shut down? I would encourage you to follow-up with a doctor for a second opinion, with AODM (Type II) being another culprit for yourself. The two diseases have different treatments and approaches. Of course, Juvenile Diabetes (Type I) in a six-year old is the standard for this disease.
I would also encourage you to share more on Dr. Beck's blog. I think you would find much support there from many, including Richard himself, in exploring your loss of faith. I am a true skeptic, and I have so far only been lectured by one other poster who termed my posts as "snotty". And I have made some new friends.
Finally, death comes for us all in the end. This is what Richard's series is about, but like you I felt the need to examine it in a more real and less "spiritual" and abstract way.
Sam, thanks for the reply. A little further explanation of my situation is in order.
ReplyDeleteMy original diagnosis was Type 2. For 6 weeks I was on the standard treatment course: limited diet, glucophage/metformin, exercise, etc. However, at the same time, since T1D runs in my family, I was given blood tests to determine the final diagnosis.
The juvenile vs. adult-onset terminology is a bit of a misnomer and really does not really describe what is going on. Type 1 diabetes is an auto-immune disorder caused when the body’s immune response attacks the beta-islet cells in the pancreas, the cells that produce insulin. This attack is brought on by a trigger, the causes of which are not well known. Regardless of the source trigger, T1D can onset at any age. The clinic where I am cared for has many children’s cases, but also has an adult clinic, for those whose onset was like mine. There is one client who was 63 when she was diagnosed as T1D.
In the case of both my son and myself, the trigger was likely a virus we both got in 2006 (flu, norovirus, rotavirus, ???). Since we were both genetically predisposed, due to family history, our systems responded similarly. Being only 5 years old, my son’s development was fairly acute. Mine took several months to a year to develop.
My blood test came back positive for the beta-cell antibody, and the diagnosis was finalized, with no doubt. I was transferred from my PCP to a specialist, and the rest is history. My pancreas seemed to work fine for 36 years. Now my body attacks it. There is not a lot of sense in that.
Anyway, a little background to explain where I come from. Thank you, again, for the encouragement to share on ET. I believe you are correct about that space.
Sam, I'm so glad you have your own blog. I love the last line you wrote, about how the hardest thing in this life isn't fearing death, but locating hope. I cringe every time I see posters like the one who called you "snotty" (we all know who that is), and the preachianity they espouse. God knows there should be a 12-step recovery program for those of us who have gotten out of that.
ReplyDeleteJustin, I freely admit I have not experienced the daily struggle to stay alive physically. I did, however, experience near-death just hours after my first child was born. I was bleeding out internally, and when hospital staff discovered it, my BP was 60/40 and falling. My initial response to that white-out was fear because of my theology ("Do I 'believe' well enough? Or am I gonna fry?"). The experience itself wasn't fearful, and returning was a matter of taking back on the physical pain and internal non-physical heaviness that I live and wrestle with all the time. Afterward, I questioned whether it was real or dream. Because I was only temporarily stable, 3 days later I had to have a 2-pint transfusion. Doctors said that without it, I would die. There was some number that each pint of blood was supposed to bring up, by 2 points each. At the time, my number was 8 and the blood was supposed to bring me up to 12 (they said 15 was "normal"). At the end of the 2-pints, I was still an 8, which they said meant that I would have dropped to a 4 without it and been dead.
It took a long time for me to shed the theology I grew up in, but I could never shake the fact that what I experienced was completely incongruent with what I'd been taught and told was "Biblical." I had been so bought in, wanting to "get it right." But as life has thrown more and more curve balls, and churchianity and preachianity have proven false, I'm wandering out here in no-man's-land with the rest of the fellow travelers who also realised those who "had the answers" really didn't.
I apologize for waxing long. But because of the accusatory posters at Dr. Beck's blog, I don't feel free to share much there. Although like you, Sam, I feel that I have found a few friends there who "get it." Thank you for responding to me, and for sharing your thoughts and experiences.
Justin,
ReplyDeleteThank you for sharing your story. I am humbled by it. Partly because it is so serious, but also because it is unique in my experience, and I sometimes tend to feel as if I had "seen it all" during my career.
I have learned something from you about diabetes (both types) which I did not know. I have a family hx of AODM, and have been A1C(?) of 7 in the past which my Internist flatly states "is Diabetes". However, I have none of the other symptoms as of yet. Lord knows I do NOT need any more diseases.
I hope you get the best treatment you can find, and especially for your son that a cure will come. Thank you again for sharing with me. And please do stick with ET.
Patricia,
ReplyDeleteI have written about myself in various places over the past 15 years and cannot remember how much I have divulged at ET, but your story is precious to me. We are so much at the same place. I cannot unburden myself yet again of the details of my disabilities, and you wouldn’t need all that info anyway. I have had a one-thing-leads-to-another set of horrors, both genetic (physical) and spiritual (Calvinistic fundamentalism).
After orthopedic surgery led to blood clots (leg and ultimately pulmonary embolism x2) which was then further complicated by removal my sigmoid colon, I had some type of experience while recovering from surgery. But it was nothing like others generally describe. It was more like a seven day hallucination. I spent many years working with schizophrenics, and I know what a delusion is. And this is what I had.
You, on the other hand, had the same type of experience many others who have had NDE have described. I “saw” the slaughter of innocents around the walls of Jerusalem, had my name repeatedly shouted at me with the command to “begin attending church!!” and that this was my “final warning!”. I was instructed to go to my mailbox at midnight on the day after I was discharged from the hospital and there I would find “15 videotapes” which would “prove” that I had been to (?) Dante’s Inferno. All this was a lie, and I did it to myself.
You said: ("Do I 'believe' well enough? Or am I gonna fry?"). It took a long time for me to shed the theology I grew up in, but I could never shake the fact that what I experienced was completely incongruent with what I'd been taught and told was "Biblical." I had been so bought in, wanting to "get it right."
That’s what I think almost every day. The people (was it “Matthew”?) at ET do not threaten me in the least. NO one can be worse than the man who was my pastor for the first 21 years of my life. Was it you who sent the link about Narcissistic mothers? He possessed all those traits, and then some. As Mattie Ross said in “True Grit” – “I’ll not bandy words with a fool”. Most of my posts end up in the trash can before I hit the Send button, because just writing them is enough. I know that you cannot argue with people who think they have Divine Revelation on their side.
Two books which I found helpful were “Leaving The Fold” by Marlene Winell, and “Fundamentalism: Hazards and Heartbreaks”, by Rod L. Evans. Please continue to contribute to ET. And never be afraid to confront folks, especially when you smell a dead fish. You have much of value to say.
Sam, I did not mention T2D much as that is not my experience. However, I am intimately familiar with A1C numbers. 7 is arguably high, and your internist is correct to bring it up to you. But, my lowest has been 6.1 and I am currently 6.6, and thus I am under "control". (BTW, my A1C at diagnosis was 10.5) I don't pretend to give you advice, except to say a "pre-diabetic" A1C number can be well controlled with diet and exercise (even a little exercise as is possible). I agree, that's just one more thing to worry about.
ReplyDeletePatricia, thanks for sharing your story. I am glad you are still with us. It seems that situations like that are so chaotic as to defy any reason. I'm coming to the opinion that when any of us come out of a situation like that it has more to do with random chance than with any Providential election. And so I'm all the more thankful for the lucky ones of us who continue to make it.
If you will bear with me: I have been writing this while watching out of the corner of my eye the situation in Las Vegas with regard to the race car driver (Dan Wheldon) who was killed in a race wreck this afternoon. He was 33 years old. It's easy to write off this as the natural result of very risky choices in occupation and behavior. But I see it differently. "It was his own fault" is the all-too-easy answer from those who don't risk anything out of fear of dying, rather than risk everything for something they love and enjoy. These men and women are human beings doing their dead level best to fight the slavery of death. I hope the answer to to encourage those who remain to continue to take risks to preserve and promote life and love within life.
Good night to both of you.
Sam, I thank you for your kind words. Having grown up youngest under the dominion of a narcissistic mother, an enabling father (now dead), a bullying, clever, manipulative older sister, and a brother who has spent the last 30 years pulling suicide stunts, I battle daily to try to heal. In January, I made the decision to cut off contact from them after my mother attacked me again in narcissistic rage in front of my kids, to cease allowing the family system to negate me as scapegoat. Best decision I've made since leaving the Baptist church.
ReplyDeleteI wish I knew the right words. You've been through so much. I wonder if the anesthesia you were under in surgery played a role in the hallucination, feeding on the memories of abuse you went through.
The character "David" over at ET is likely your name caller. He reminds me very much of a family member by marriage. Someone who enjoys "being right" as his narcotic of choice, blasting others, reducing all things to semantics and word games. He once referred to me as a "dog", and as a result I no longer engage with him at all.
Good night ya'll.
Sam, and Justin and Patricia: Thank you! I identify SO much with your various stories. I have been struggling through a crisis of faith for 30 years I suppose, and during most of that time I felt completely alone. Afraid to admit, even to myself, that I had serious doubts and questions. I too had that fundamentalist upbringing that makes it so very difficult to admit to having doubts and questions.
ReplyDeleteOver the last few years I have begun to see that there might be a way forward. Blogs like Experimental Theology, books from Emerging/Emergent, and the knowledge that I am not alone in all of this (due to people like you), give me a faint glimmer of hope.
I am a bit too overwhelmed and sad at the moment to attempt any more of my story. Maybe at a later point. But I do look forward to running into all of you over at ET. And I will continue to drop by here as well.
Blessings!
Dan G
Sam- I replied to you over at ET because the whole post and your responses hit me so close to home. I have feared death as i said over at ET since age 8 because my dad died of cancer and it came as a shock because he and my mother had decided not to tell me or my sister he was dying. Death to me has been like a saunting shadow ever since, I have tried all kinds of defense mechanisms against it, all to no avail in deepest sense. Jesus is the hope i found, yet my own fears,worries over failure to live out what Jesus required and a few other things have left me in a quicksand of my own making within my mind. I have had heart rouble as well as type 2 diabetes for a few years now so much as Justin shared i face the possibility of death every day. I thank you so much for sharing yourself and encouraging other to share. Justin, Patricia and Dan thank you all so very much as well. You all have genuine courage,compassion and concern keep it up!!!
ReplyDeleteRobert,
ReplyDeleteThanks for sharing a bit with us. I search for some hope or meaning every day. I am often discouraged by the empty words of the "faithful", so I will not burden you with more.
I think it is important to keep facing our fears. I don't have the strength to do this a lot, but I try a little each day. Remain as upbeat as possible, and seek out the company of others who will listen and share.
Sam-thanks for your response at ET as well as on here.I really appreciate the chance to dialogue with you and any others. I have a very rational mimd also, however my imagination tends to run rampant and so i have alot of emotional thinking as well. How's that for an oxymoron?? lol Your comment about how you could not come to grips with your mothers fear running alongside her faith really hit me because it mirrors my life struggle. I fear even in spite of believing my salvation is secured by Jesus because of *what ifs* Various theologies as i am sure you know of make assurance a rare commodity, especially if you are a more sensitive soul and prone to anxiery and self-doubt. Aside from Jesus Himself, I don't thin ka single person can be free of fear completely, unless Gods love just somehow makes it happen. I am shy at times to speak on these things because I worry about being judged. I hope Dr beck continues to expand more on the issues raised. If you ever care to email me Sam it is magicgenie32@yahoo.com. Would truly like to maintain a discussion with you and gain perspective from your viewpoints. Glad you have a blog and hope you do still share at ET
ReplyDelete