Our friend Gene Palumbo offers this as suggested reading, NYT story in which a composer with hellacious migraines finds inspiration in the possibility that St. Hildegard von Bingen, another composer, may have found inspiration in her own struggle with migraines.
The slant in this story is not religious, but it makes me think about what Christians are supposed to take from suffering. Christ's response to chronic suffering in Scripture is always to cure it.
Certainly the lives of saints who suffered offer glimpses into how those with strong connections to the divine soldier on in spite of affliction and sometimes because of it.
So Catholics know there are lessons and transformations that, with grace, can come from long-term suffering. But there are also days of deep doubt and resentment, and a temptation to believe that God is one mean son of a bitch.
"My thoughts are not your thoughts, and your ways are not my ways," God reminds us through Isaiah. Got that right, pal.
I find comfort in Flannery O'Connor's reluctant pilgrimage to Lourdes. She seems to have gone mostly to get her family off her back, and she was appalled by some aspects of the shrine. It didn't cure her; she died of lupus. But she noted that when she returned from Lourdes, she was able to finish the story she was working on. It was a little miracle--a few good days, the chance to finish a project.
It's easy to overlook those little miracles, but those are the ones that keep us going in chronic illness or pain. The writer of the NYT essay never talks about grace or miracles in Catholic terms, but she has acknowledged it nonethless. I also like to think that, in doing so, she has made St. Hildegard her friend in heaven.
I read the article from Gene's link. Just...wow. I can't even imagine. It's hard to fathom the toll a chronic illness takes. Makes me think of the guy in John 5:5 at the pool of Bethsaida who was an invalid for 38 years. Or the lady from my husband's graduating class, who died this week after a battle for more than 35 years with multiple sclerosis. Shortly after she was diagnosed, she and her husband divorced. He remarried, not so long afterwards. I try, with limited success, not to be judgemental. I can't know all the factors which may have been involved. Suffice it to say that a chronic illness also affects family members, sometimes to the extent that they can't cope with it. At least the woman in the article has the support of her family.
ReplyDeleteI had some minor brushes with opthalmic migraines which were apparently hormonally related, because I have now pretty much aged out of them. Not everything about getting old is bad. But I should follow Hildegard's example in making the best of bad stuff, because there are a lot of things that one ages into, rather than out of.
Coincidentally, this reading popped up in today's Morning Prayer from the breviary:
2 Corinthians 12:9-10
"I shall be very happy to make my weaknesses my special boast so that the power of Christ may stay over me, and that is why I am quite content with my weaknesses, and with insults, hardships, persecutions, and the agonies I go through for Christ’s sake. For it is when I am weak that I am strong."
Hard to internalize "For it is when I am weak that I am strong", though.
Katherine, chronic, regressing MS is indeed a terrible disease. I note that the woman you knew who died remarried, just as her first husband did after the divorce. So it was her second husband who stood by her as she died by inches.
DeleteWe have a close friend who is in the late stages of MS. He now has only control of his head and of one hand. He was first diagnosed about 30 years ago, and could still walk and do most things when we first met him. Around the same time, I met a woman whose son would play with ours at the community pool. We did not see her otherwise - different neighborhoods and schools. One day she told me that she was getting a divorce. Her husband had been diagnosed with MS. She told me that she was a nurse, and since she knew what would be coming, and the demands that would be made on her as her husband's condition got worse, she decided she did not want to do it. So she divorced him. She seemed very "hard" to me, and in my mind, I judged her pretty harshly.
But, after years of watching the sad, relentless course our friend's disease has taken, and the enormous stress on him and his family, while disagreeing with the nurse still, I could understand a bit more. I was less judgmental in hind sight.
How many of us know what we would really do in the same circumstances - not the victim of the illness, but the major support person - physically, financially, and emotionally? I don't know if I would have been strong enough to deal with it. Maybe I would have been like the nurse. I would pray that I would be stronger than that, but I don't know. Fortunately, that particular test has not been required of me so far.
Once our friend could no longer work at all, by the time he was in his early 50s, it was doubly hard for his wife, as their sons were approaching college age. They had sent them to an expensive private Catholic high school (our friend was an alum of the same school), and, of course, now there was only one income. According to the formulae for aid, she made "too much" money to qualify. The formula didn't take into account the absolutely huge costs involved with hiring part-time care for her husband while she worked - not covered by insurance - since he was totally helpless and bedridden. She finally wrote a couple of letters explaining the situation in detail. She got a bit of help from the high school, but her older son's out-of-state (higher tuition for him) public university (Michigan) responded with a full tuition scholarship. Made me think that someone in their office might have been close to a patient with chronic, regressive MS and knew from experience how enormous the challenges were for those supporting a family while also supporting a bedridden, physically helpless spouse. It breaks our hearts too whenever we visit him - his mind is still sharp as a tack, and he knows what is coming and that he is totally helpless to stop the slow death of his body.
Our friend is a very devout Catholic. When he was first diagnosed, his physician father, a Knight of Malta, took him to Lourdes, hoping for a medical miracle. It didn't happen. Many years later, now fully bedridden, a group of Knights of Malta took him to Lourdes again. Once again, his physical condition did not improve. After his first trip, years ago when he was in his 30s, and could still walk and function more or less normally, he told me that the first trip had helped him even though it didn't cure him. He said it helped him deal with the illness emotionally. I'm not sure if the second trip did even that.
Anne, actually the woman we knew who died didn't remarry, only her husband did. They had two children prior to her becoming ill, and I believe they were supportive of their mother. But you are right that none of us really knows what we would do given those circumstances. And I have even heard of couples who divorced because that was the only way the one who was sick could get Medicaid assistance.
DeleteAs for Lourdes, it does seem that people more often get spiritual benefit rather than physical healing. The actual physical miracles are pretty few and far between. It is telling that Bernadette herself was not cured of the painful tuberculosis of the bone that she died of. Of course maybe she never visited Lourdes again once she entered the convent.
Divorcing a sick spouse seems fairly common.
DeleteSame thing happened time friend of our family. Father divorced mother with MS, remarried, and left it to the kids to deal with the sick mom.
Friend with cancer and husband divorced when she had a bone marrow transplant (it failed) so that he would not be stuck with bills, though they continued to live together until she died.
Our attorney told us that the Medicare people are wise to this plot and that they sometimes take measures to force repayment from ex-spouses if they see the couple continued to reside at the same address.
Occasional discomforts and inconveniences but so far ,so good. Nothing is scarier to me than the word "chronic" though my time in the barrel could be around the corner. I'm too much of a wimp for the real stuff. Good post, Jean. Good NYT article.
ReplyDeleteReading the NYT article made me glad I have chronic blood cancer and not relentless migraines with mental symptoms. Losing my grip on reality is my worst fear.
ReplyDeleteAs with most blood cancers, my major symptom is fatigue, which everyone waves away as negligible until they actually have it.
I do run risks of a thrilling host of complications. The cancer will likely progress to painful myelofibrosis or leukemia if I live long enough because small daily doses of chemo only control, not cure, the disease. Docs try to time the start of chemo so that you are likely to have died from something else before the chemo eats your kidneys and liver or causes secondary cancers in 10-20 years.
So besides fatigue, there can be a lot of stress and uncertainty.
When I started on the chemo, Raber wanted to make a lot of rash promises of the Forever variety.
I told him let's take it a step at a time. If I need constant care, I do not want to beggar him with bills or wear him down with trying to deal with an incapacitated and demanding wife who is hardly sweetness and light on a good day.
Since then, I have worked harder to "act normal" because it is upsetting for him if I don't. Only about 50 percent of that is for his benefit. The other 50 percent is because his fears make me nervous.
But today is our 34th wedding anniversary, and, soifsoifar, so good.
Jean, yeah, other people's fears are contagious.
DeleteCongrats on your anniversary, hope you are doing something fun today.
Happy Anniversary, Jean. Sweetness and light are overrated.
DeleteI keep telling Raber that. Yeah, there's the caustic sarcasm, but, on the up side, I have never asked for diamonds and roses, I'd rather watch "Caddyshack" or "The Wire" than "Titanic" or "The Notebook," I am never late, and if he wants to go somewhere, so can be ready in 10 minutes.
DeleteI like the tiny little diamonds a lot. Embedded in a brass binder, they are the greatest for grinding. Nanodiamonds are great for polishing optics. Not very appreciated in a ring, though. 0.00000000000000001 carat or thereabouts.
DeleteNanodiamonds don't sound very fun to wear. I asked for an ametrine once though, and got it.
DeleteBelated anniversary wishes, Jean.
DeleteI am with you. I hope never to be a huge burden on my husband or family, and will clearly spell out that I want outside care. I don't want my own sons wiping my bottom someday. If we are careful, we should have enough money to pay for decent care, preferably in-home, but at least in a decent institutional setting.
Now that my husband and I are in our 70s, we are seeing more and more situations where the not-ill spouse is so stressed and exhausted from the needs of their husband or wife that sometimes it seems the sick spouse might outlive them. A friend was near total physical collapse from caring for his wife with Alzheimer's. The middle aged adult children staged an intervention - after making all of the arrangements, they moved their mother into a local nursing home, perhaps saving their father's life for a while, as his own health was not good even before his wife's needs were so great. However, the family had the financial resources for this option. She died 3 months after going to the nursing home. Not every family has the financial resources for this option, and medicaid requires near poverty before helping. Medicare has limits also. I really don't know what the answers are, but with the aging of my generation (the boomers), it's just going to be a problem that gets worse.
I'm with Anne and Jean, I don't want my family to have to deal with it if I can't do my own personal care. When we saw with my mother-in-law 's situation how quickly assisted living or nursing home can burn through one's resources, we took out a long term care policy through the K of C.
DeleteAnd if at some point I end up in hospice care, I don't want my family to try to deal with that at home, either. I've seen too many people stressed out to the max trying to provide the "dying at home" scenario for their loved ones.
Medicare pays 100 percent of home hospice as long as you agree to go on palliative and have a DNR order.
DeleteDad died at home, but was lucid and able to do personal care until the last week. It was hard on my mother emotionally, but a nursing home would have been worse.
Home hospice is fine as long as you have a back up plan and accept respite help, neither of which my mother wanted.
Jean: Happy Anniversary!
ReplyDeleteJean, Let me second Gene's felicitations.
ReplyDeleteI am a big Hildegarde fan. I would not hesitate to call on her herbal expertise (cheaper than, and probably just as effective as, certain modern multinational companies) in prayer. Istm that people who pray for miracles see a lot more of them than the rest of us. That said, I went to write checks one day and couldn't find my check book. I searched all over, and when you do that, you (I) keep returning to where it should be in hopes that the universe is properly resettled. Finally, for the first time in my life, I prayed to St. Anthony: "Tony, Tony, look around; something's lost and must be found." To start over, I went back again to where the checkbook should have been and there it was. As the credulous faithful say, you'll never convince me...
One of my friends recounted a couple of, let's say, strange incidents to us. He was in construction and had he not been built like the wall of Trump's dreams, he would have encountered a lot of male skepticism iof the "yeah, sure" variety. There was a priest among us. He is not the kind of priest who would..., well, let me just note that in the course of a Sunday homily he said "I was really pissed off." Anyhow, as a seminarian he worked two summers at Lourdes, pushing wheel chairs and the like, and while we were digesting the "strange incidents," he contributed that he had seen things there that you can think whatever you want about them but HE can't explain them rationally.
I had an aunt with MS, from which she eventually died, and I never saw her uncheerful. I don't know where she got her cheer, I don't want to find out, and I am pretty sure that what would seem to be obvious is never the whole story.
Tom, we are St. Anthony fans. Named one of our sons after him. It's funny, the kid is good at finding stuff that is missing. Guess he's not a kid anymore, since his next birthday is the big 4-0.
DeleteI saw a picture of St. Anthony on Facebook; it was your standard holy card image. But the caption read, "You people need to find your own damn $&#@.
St. Anthony is probably the reason I am not a total unbeliever at this point. I left the RCC as I have mentioned. I began going to an Episcopal Parish for my husband, who had spent 30+ years going to the RC parish with me. But, my disillusionment eventually went beyond the RCC. I pretty much began to doubt the entire story. I believed in God, but as far as the rest of the christian story, I was not so sure. I'm still not. I don't believe in intercessory prayer either, asking someone, dead or alive, to ask God to help me.
ReplyDeleteHowever, I am forced to admit that St. Anthony keeps me wondering. I have prayed to St. Anthony to help in finding lost things since I was a kid. My brother's name was Anthony, and we had a nice statue of him in our home. I continued to pray to him whenever the lost thing was important (didn't want to use up my allotment of help finding things too soon on trivial things) - throughout my entire adult life. I find it almost spooky that almost every time (reserving the petition for serious things only), I found the item. I won't go into all of them, just a couple. Years ago we were skiing with family, a three hour drive from home. It was getting late and dark, it had started snowing again, lightly, and they were going to close the lifts. My brother-in-law realized that somewhere on the slopes he must have dropped his car keys. He and my husband rode the very last lift up to ski down and look for them. What were the odds? What routes did he take when skiing all day? How many other skiers had take the same routes down the mountain? It was hard to see it was getting so dark. They came down the mountain - keys in hand. That was one of the more spectacular saves. I had not mentioned to them that I had prayed to St. Anthony. There have been others, quite a few, including Tom's experience of searching absolutely everywhere, starting with where the lost item should have been, then everywhere else - house, yard, car etc, repeating several times the search of where the lost item should have been just in case my eyes weren't working very well and finally finding the item exactly where it should have been, in the place I had looked several times, looking very carefully each time. On another occasion, having given up on finding the item (worth a lot of money and a lot of trouble to replace - hearing aids), I randomly moved the soap dish in my powder room to clean the countertop. And there they were. There is absolutely no chance in hades that I had ever put them where they were found. St. Anthony?
So, St. Anthony, with a bit of assistance from the Episcopal church, may just save what little faith I have in the christian story.
The whole St. Tony deal, as I read it, is this: You're getting flustered and upset because something is lost, you say the prayer, it clears your mind, and then you can remember where your stuff is. Or maybe St. Tony clears your mind. Whichever. Sometimes it works.
ReplyDeleteI do believe in intercessory prayers. I don't expect God to give a rip about me and my problems, many of which are self-made. But I do think His Remoteness might listen to a saint.
Jean, if God listens to "saints" more than to we ordinary folk, then does it mean s/he loves those who don't pray to saints less than those who do? Does s/he love those who make petitions directly to him/her/it less than those who are baptized Catholics and pray to saints for favors from God? Does God love Hindus, and Jews, and Muslims and Sufis, and Sikhs, and Buddhists and atheists and everyone else who doesn't have a baptized Catholic handy to petition a saint on their behalf less than those Catholics who pray to saints for divine favors?
ReplyDeleteDoesn't match my understanding of God as Love. Just my opinion after many years of thinking about it.
However, when discussing the issue of praying for the sick with my Episcopal priest, I have thought a lot about what he said. He believes that intercessory prayer can help, primriy because he believes that the pray-er may unconsciously be sending out some kind of positive mind/emotional energy giving support to the person prayed for. And he believes that if a lot of people do this more or less at the same time, the power of the prayers are amplified. Sort of getting into the whole mind, ESP, telepathy stuff we talked about a few months ago.
But, I do believe that St. Anthony might directly respond to requests - not he petitions God to find the lost keys on the ski slope, a lost/found situation which really had nothing to do with lack of clarity of mind! Or maybe it was just sheer good luck to find them under almost impossible circumstances. My evangelical protestant brother-in-law most definitely did not pray to St. Anthony to clear his mind! I am not always sure I believe in Jesus was God or the rest of it, but I do more or less believe that there is a St. Anthony out there somewhere in the spirit world who listens to people who lose their important stuff. It's happened to me often enough during my lifetime, that I have come to (almost, most of the time) believe in St. Anthony. St. Jude is another story.
Some say good luck, some say intercession by Someone or by someone who knows Someone. I like the idea of the Communion of Saints. I believe in it more than I do in most doctrine. As Pope Benedict said, "No one lives alone. No one sins alone. No one is saved alone." I will take the cloud of witnesses over "Gott mit Uns" every time.
DeleteI don't believe God loves anybody in particular. Possibly the saints (and intercessors in many other faiths) are able to capture the God's attention at times.
DeleteI don't pretend to know how it works. The stories of the saints, despite the embellishments, accretions, and downright lies, were my "in" to Trinitarian Christianity. I hope they will be there when I go "out."
I am basically skeptical of most theology, but some more than others (fundamentalism, prosperity gospel, Jehovah's Witnesses, Moonies, etc.). I do believe Jesus (possibly others) were sent to show us how to live, probably because God became impatient with the endless half assery going on all the time.
If this is all there is, I am grateful for my time, and I hope I will not have been a total waste of space. I ask the saints to make the end quick and not hurt too much. If there is a Hereafter for the doubters and weak of faith like me, I hope I don't end up in a lake of fire.
Jean, What else does God have to do besides pay attention to his creation and creatures?
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DeleteI'm sure God is paying attention, but my fear is that it is with an angry and critical eye. Perhaps my inability to get away from the exacting God I knew as a child says more about me than God.
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