Nobody’s-Listening Spirituality: When Hell Isn’t Just a Place for Others Anymore
People don't generally like to hear about stuff like this. Still...
Hello Hell
Imagine a disease progression in its 15th year that affects your nerves, muscles, connective tissue and bones and that by now has you mostly bedridden and in widespread, intractable pain. Picture the associated losses, the least of which include career and friends. You’ve been unable to leave the house for over 3 years. You can’t sit to use a wheelchair and you almost can’t walk, spending your upright time kneeling at a keyboard, a lot of it holding your bladder because you can only make so many trips to the bathroom each day. Your reach has deteriorated to about the length of your forearms, and to make a long story a short metaphor that often works literally, your physical state puts most of life’s comforts as well as pleasures out of reach.
Helpful idea? You’ve tried it. Prayers, words of hope? Whatever you have - it's eluded diagnosis even at NIH and Johns Hopkins - is innately progressive, similar to MS or Lou Gehrig’s. Over the past 15 years, you’ve received more thoughts, prayers and positive energy vibes than you can count. You’ve had to come to terms with the fact that this thing has really happened to you.
Stem Cell Health and Wellness
While you know that no situation is literally hopeless, this one’s about as hopeless as a situation can get. The interrelated ways in which your body’s muscles, connective tissue, peripheral nerves and bones have been affected make it pretty clear that your best chance of a cure is when scientists figure out how to run time backwards. It might have been different if stem cell research hadn’t been blocked all these years. You’ll never know, but take comfort in realizing that generations of stem cells have continued to be lovingly nurtured and cared for until the fertility clinics holding them dump them out at the next bio-waste pickup. As the good book says, right in the middle of that long section where it op-eds on contemporary reproductive issues: “What greater love is there than this: that a man should give up all chance of recovery for the sake of other people’s ineffectual love of cells that lack a central nervous system?”
You learn that good things don’t come to all who wait, that sometimes bad things happen to good people – and you especially learn that this rule doesn’t get bent just because it’s you. You put yourself in perspective. You stop reflexively comparing yourself to people who are better off than you, learning not to ask “Why me?" but “Why not me?” – although occasionally you still go, “Why me instead of a stem cell?”
But finally, something like this is just the downside of ordinary life. Being mortal, sooner or later most of us get to some real pain. So some of the things that one notices when the heat gets turned up for a very long time may be worth mentioning.
Up next: Hell Trilogy, Part I...
Hello Hell
Imagine a disease progression in its 15th year that affects your nerves, muscles, connective tissue and bones and that by now has you mostly bedridden and in widespread, intractable pain. Picture the associated losses, the least of which include career and friends. You’ve been unable to leave the house for over 3 years. You can’t sit to use a wheelchair and you almost can’t walk, spending your upright time kneeling at a keyboard, a lot of it holding your bladder because you can only make so many trips to the bathroom each day. Your reach has deteriorated to about the length of your forearms, and to make a long story a short metaphor that often works literally, your physical state puts most of life’s comforts as well as pleasures out of reach.
Helpful idea? You’ve tried it. Prayers, words of hope? Whatever you have - it's eluded diagnosis even at NIH and Johns Hopkins - is innately progressive, similar to MS or Lou Gehrig’s. Over the past 15 years, you’ve received more thoughts, prayers and positive energy vibes than you can count. You’ve had to come to terms with the fact that this thing has really happened to you.
Stem Cell Health and Wellness
While you know that no situation is literally hopeless, this one’s about as hopeless as a situation can get. The interrelated ways in which your body’s muscles, connective tissue, peripheral nerves and bones have been affected make it pretty clear that your best chance of a cure is when scientists figure out how to run time backwards. It might have been different if stem cell research hadn’t been blocked all these years. You’ll never know, but take comfort in realizing that generations of stem cells have continued to be lovingly nurtured and cared for until the fertility clinics holding them dump them out at the next bio-waste pickup. As the good book says, right in the middle of that long section where it op-eds on contemporary reproductive issues: “What greater love is there than this: that a man should give up all chance of recovery for the sake of other people’s ineffectual love of cells that lack a central nervous system?”
You learn that good things don’t come to all who wait, that sometimes bad things happen to good people – and you especially learn that this rule doesn’t get bent just because it’s you. You put yourself in perspective. You stop reflexively comparing yourself to people who are better off than you, learning not to ask “Why me?" but “Why not me?” – although occasionally you still go, “Why me instead of a stem cell?”
But finally, something like this is just the downside of ordinary life. Being mortal, sooner or later most of us get to some real pain. So some of the things that one notices when the heat gets turned up for a very long time may be worth mentioning.
Up next: Hell Trilogy, Part I...
Posted by Paul at 11:44 AM Permalink
29 Comments:
I don't understand the stem cell situation. Do Not Understand. Such a mindless insistence on the potential of life instead of the real, breathing, suffering actuality is completely beyond my ken.
Love to you, Paul. You are one of the strongest people I've ever "known."
The hardest thing since I've been a Catholic is trying to still think that God is good, or that I'm not bad .... because bad things are still happening to me. It's incredibly hard to think of God as a person and to have a relationship with him, and have him seem not to help with the bad stuff.
It's hard to know you, and my friend the Jesuit who is also very ill, and others in similar circumstances, and to figure out why God doesn't help.
I can't say I've given up trying to figure it out but I've come to the conclusion that this is a really sad place, and I wonder how God can live with himself. But one thing that I've noticed in seeing God as a person, is that even though he isn't fixing the bad stuff, he seems to be keeping me company in it. I don't know if that's enough, though.
I think of you and think good thoughts for you and send prayers every day, though I know that's poor consolation.
With you.
I guess with something like this you’re as strong as you can be and have to be. Like being thrown into the water and it turns out you can swim even though you never wanted to get thrown in or to learn to swim.
I know what you mean, I never know whether to put “know” in quotes with “cyber-people.” But sometimes you do feel that you really get to know people reasonably well, especially as time goes by. Btw, thanks for not putting quotes around “love,” lol… now that would hafta hurt!
I appreciate it, and send the same back to you.
CRYSTAL: “But one thing that I've noticed in seeing God as a person, is that even though he isn't fixing the bad stuff, he seems to be keeping me company in it. I don't know if that's enough, though.”
It is. Speaking personally, I know it is, or I’d have died/cracked up some time ago.
And that accompaniment is enough regardless of whether one’s concept or experience of God is of God as a person. Being a person oneself makes the experience personal. To interface with God is a human and intimate thing, whether this is aided or unaided by any image of God.
Thank you for your good thoughts; also, I admire your uncommon level of straightforwardness and honesty about your own perspective – what you see as its difficulties as well as strengths.
N2: I have to say, between your comment and the preceding ones, it's good to have "cyberfriends."
Yes - in fact we are, and do. Always loved this Beatles lyric:
And when the night is cloudy
There is still a light that shines on me
Shine until tomorrow
Let it be -
When I imagine a disease progression such as you described my heart goes out to you. My prayers will follow. And as you suggested that all of those prayers and well wishes have not changed much about your situation I would have to question what else I might do. Most importantly I believe that I need to live my life in a closer personal relationship with God with the understanding that growth in my faith will follow. And I must promote a world in which people who are suffering receive all of the resources they need to be healed or comforted. As you know, I'm a new reader here. Your words are enlightening, thoughtful and entertaining. I thank God for you.
Amazing.
If I were in your shoes I am almost certain that I would retaliate by making life a living hell for the entire species
I think that you are incredible...
and as far as the stem cell issue, well, I toss it up to the fact that some people are more concerned with stockpiling enough imaginary brownie points to ensure that they will have a Mansion in the best part of Heaven.
Despite Dubya's best efforts in your neck of the woods, there are scientists in other parts of the world that are working on stem cell research.
It will happen.
In my response to your earlier post I was trying to shield ‘peace’ from ‘indifference arising from cynicism'.
What is the source of absolute, uncontaminated peace that has infinite power to purity everything? All meaningful philosophies stem from this question. I got addicted to participating in your discussion threads (the only blog in which I post my comments) because I sensed that you espouse such a meaningful philosophy.
I have one advice: ‘Keep away from discussions on politics’. God had withheld power from you for a purpose. Hold on to your faith and follow him. Wistfully talking about the games of power will only take you farther from inner peace.
Regarding stem cell research I have mixed feelings. Suffering my own incarceration as the caregiver for an Alzheimer Disease patient for the past five years I myself often keep thinking what wonders stem cell research could have done for such diseases. But then almost everyday I read in newspapers about the rackets indulging in organ trading and similar atrocities. What atrocities could such racketeers perpetrate in the name of stem cell research!!!
The indomitable spirit articulates so strongly through you.
LORD TENNISANYONE: Then is your true identity never to be divulged for the duration of your “hiatus?” People will expect much more from you by way of 19th c. Britlit references ya know, especially me, the English Major. Please:
Compare and contrast William Wordsworth's poetics as expounded in his introduction to Lyrical Ballads with those of Alfred Lord TennisAnyone as elaborated in the Preface to his great narrative epic, "I Like Ping Pong Too."
That is good about the stem cell research going forward elsewhere. In the last analysis, I don’t think it’s possible to bottle up technological know-how. You just have to hope the species ends up making more good than evil use of it – grows up before it blows up.
From the outside I can see how it would look amazing, but honestly, I bet you would have done a lot like I did in my shoes, and that most people would – at least all of those that wouldn’t end up killing themselves or developing major psychological problems. What you do is go through a process that definitely includes an angry stage, a grief stage… all that stuff. Except that in a case like mine, the stages get really prolonged...
For about seven years I was misdiagnosed with a rare disease I don’t happen to have that can take months to years to recover from. So the doctors kept telling me to stay with the program and I'd get results...
DAWN, thank you. A funny thing is that once in a while, even after all these years, I also get a second or two where I can’t fathom it – it seems impossible this could be happening. These moments are more and more rare, but I suspect they may never stop completely. Until I was 37 I was healthy, or at least symptom-free and no one had the slightest idea anything might be “lurking” – no one in my family has any rare diseases.
So that was a long time to get used to being healthy! At some level, this will never feel normal to me. My dreams often reflect this – even as recently as a couple months, ago I had one of those dreams where I’m going for a jog and realizing that I haven’t gone jogging for ages and wondering what’s up with that - !
AVGW: And I’ve really enjoyed the regularity with which you comment.
Yes, “indifference arising from cynicism” is something altogether different from peace.
I know what you mean – technology, whether stem cells, nuclear technology, or mass media, has potential for both good and harm. To date, as a species, we’ve certainly done some of both.
I appreciate your suggestion about politics and know exactly the kind of thing you mean – people easily become inwardly disturbed in this area, turning things over and over in their minds in long ranting sessions that they occasionally vent in the presence of others.
That’s not how I’m feeling or what I’m doing. While I can’t deny a little agitation from time to time – for at least half the nation, the last seven years have been appalling – it’s infrequent. When I post on politics, it’s in areas where I have some knowledge – usually healthcare in the US or the misuse of religion in politics – and I’m trying to communicate that.
It will be good once the book’s available, because that’s where I state my perspective clearly. It’s apolitical, aside from broad political inferences that could be deduced from it, like concern for the environment. As it gets near the release date I’m hoping I can think of ways to orient the blog more toward the book.
RIVERSGRACE, I’ve noticed that occasionally too– that is, how online communications can sometimes have some real influence on my “cereal bowl life,” so to speak! This thread’s a good example; it’s encouraging to me. Thank you.
DON I: I hope so. And certainly what’s standing in the way of something much better than we have now is, as they say, the lack of the political will.
In the face of an estimated 25% of all fertilized eggs that do not grow and implant and become babies, it becomes even more incomprehensible to set the bar for protected life here.
And, as you mention, to prefer to toss those tiny masses of cells into the garbage rather than use them to possibly save lives - incomprehensible.
when ever i am in pain,all i try to do is see beyond it...i.e. beyond the illsuion...but for 15years...hmm....well i have been on this plane only for 16 years...
If anyone out there wants to provide the anti-stem cell research reasoning, I'd definitely be interested in hearing that...
VISHESH, it's great that you know what you don't know - a truly admirable and valuable quality, imo - and hopefully/very likely never will have to know anything similar. Not only the length of time, but also other things about the pain associated with this condition that are unlike the normal experience of pain, make it totally beyond the bounds of anything I'd known prior to age 37.
And the normal coping mechanisms end up having to at first be greatly modified and then eventually pretty much fall by the wayside as irrelevant.
love and big hugs
Bridget
I'm also sending you "distant healing" a technique I just was trained in today.
love.
I enjoyed this reflection and I look forward to your next installment. As you said, this body is mortal and all of us will succumb to it's deterioation at some point. Your pain is not your fault, it just is. It is part of this stage of your journey.
On a side note, I have always laughed outloud at the idea that an embryo is a sacrad human life. Yes, it is a potential life--sorta like an acorn is a potential oak tree until a squirrel eats it!
EM: That's always seemed like the gist to me too - the difference between potential and actuality. And on the practical level, it's hard to legislate around other other people's reproductive organs. When it's illegal, women often die getting unsafe abortions.
KAI: I'd have to say yes and no.
The rules (to them) must be firm and clear: no cell clusters/embryos will be used to procur stem cells, because that is an intolerable use of human life. I spent several months of a Stanford course in technology and ethics reading the literature, trying to understand, but of course it doesn't go past that brightly drawn line.
All is god's will, current suffering is god's will and one must pray to him for it's appeasement, I guess, not take another "soul" to try to cure it.
this is the problem I have with the bulk of religion: the devout do not think for themselves but take the word of their preacher as the final truth.
I recently read of a journalist who met with an Islamic fundamentalist who had been part of the violent protests against the Danish cartoons. He had not seen them of course, and when the one with Mohammed wearing a turban with a bomb fuse in it was shoved within his vision he was horrified... his soul was forfeit because his eyes had fallen on the dread thing!
Then he couldn't help but look closer and observe with dawning amazement - "but this could not be the Prophet Mohammed - it looks like an Indian fakir! The Prophet wouldn't look like this!
and yet at the direction of his religious leader, he had responded violently.
I see the fundi movement as equally violent in their withholding of the potential for research.
In my thinking violence is both active, in the commission - and passive - in withholding succor. Both are an abomination and a crime against life.
avg warrier: You told Paul, "Hold on to your faith and follow him. Wistfully talking about the games of power will only take you farther from inner peace." Agreed, to an extent. While detaching from these things will bring us personally closer to our higher power, it seems to me that we must engage in these activities in order to help bring God back into the discussion and decisions.
don iannone: You said, "Before that day comes however, there will be many very hard days with more limited choices, higher costs, and many who are without options." It sounds to me, if taking the book of Revelation seriously, we are already entering the days of tribulation before the return of Christ. This makes me anxious and nervous at the same time...
paul: You mentioned "...that can take months to years to recover from. So the doctors kept telling me to stay with the program and I'd get results..." I recently went to the ER because of an extreme feeling of weakness, fatigue, etc. After being checked out at the local fire station, my BP was 180/120 and blood sugar was at 67... they suggested I go immediately so I went. I checked in, complaining of the high blood pressure, and needing to determine the cause. After an "extended exam" (as the language described in my bill) which consisted of squeezing the doc's fingers, pressing against his resistance with lifting my legs, and him looking in my eyes and ears... he shot me full of a diuretic to lower my blood pressure, then discharged me with a diagnosis of high blood pressure. So, I get charged more than $1500 for them to tell me I had what I was complaining of.
I think the main problems with the health-care industry are, 1) a lack of talent due to the fear of malpractice suits, 2) the lack of a monetary cap on malpractice suits, and 3) as a result of the previous two mistakes, a complete and utter lack of "care." I believe today's "doctors" are so worried about making the wrong diagnosis, that they simply stick by the text books, in order to have something to fall back on in the event of a lawsuit. It sucks, but that's where we are.
paul: Then you mentioned "...one of those dreams where I’m going for a jog and realizing that I haven’t gone jogging for ages..." I'm not sure I have much to add to this, except that dreams always have meaning. While the obvious explanation is that you miss jogging, and your subconscious "realizes" it via your dreams... it might just be your soul trying to remind you that you're still jogging (i.e. exercising, pushing yourself, and generally increasing your stamina), just not on your feet.
paul: "...I state my perspective clearly. It’s apolitical..." I have to say I'm impressed with your resistance to degenerating into the political discussions. Then again, as an individual truly seeking God, I think you're on the right path... God doesn't care about politics, either.
vivesh: Sounds tough, bro. You mentioned seeing "beyond the illusion" of pain. That's pretty intense language from a sixteen-year-old. What kind of pain are you going through? Is there some way someone can help?
hayden: You said, "...with the bulk of religion: the devout do not think for themselves but take the word of their preacher as the final truth." You're all too correct in this assumption. However, I would caution you to make a conscious effort to understand that, even though this generally applies, our judgement of people should be individual... if we should judge at all.
Health care in this country has huge problems. Malpractice suits, from what I’ve seen, are deliberately exaggerated by the health insurance industry as one of their excuses for ever rising premiums.
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