Tuesday, August 26, 2008

Rehab progress 2

Yesterday I visited the GP doctor my mother elected for me. He initially preached the standard medical jargon to me about stroke. He took one look at me and diagnosed me as potential diabetic, so that explains away any other health concerns I might raise. Problem is, I don't thing I am diabetic, and that leaves a lot of open questions. Anyway. he was happy that the drug regimen prescribed has resulted in lower blood pressure ( doctors have defined my blood pressure as undesirably high since I was a teen-ager, though it has always been about the same). He acted like I should be satisfied too. But I feel worse than I have in my whole life. This is a case where medical doctrine says I should feel all better. But I still feel like death warmed over. I guess I should be satisfied to please medical science, even if the patient dies.

I also complained that falls I have sustained resulted in painful injury to pelvic region and right--side ribs, so the doctor ordered xrays taken of those particular areas and pronounced me fit. I was concerned about hurting, but I suppose a bit of pain will not cause permanent damage or anything like that. My ribs especially cause severe pain and discomfort. When I sit just right, when I bend over, or for no apparent reason whatsoever, I have a pain through my right side that feels like a knife stabbing through me. Oh well, it's only painful. I guess it will get better.

My rehab session went better. I assembled a bunch of plumbing pipes, and took them apart without problem. We worked on entry to my car, which is pretty high ground clearance, and has been some frustration. I was able to get to the platform at that height after some careful planning. It was an interesting exercise, since I started out thinking it was impossible, and ended up being successful in climbing into the high-up car. In spite of some continuing serious limitations, I am making some adaptations to the disability, and can work around the problems. In spite of being largely useless for most things I used to do easily, now I can do simple things although with great effort.

Friday, August 22, 2008

Hospital Experience

I went into the hospital because my parents insisted. But the hospital care did not offer anything I felt was valuable.

I woke up that Thursday morning unable to properly control most of the right side of my body. My right arm, especially, was completely unable to move, and my right leg, though it was able to help hold me up when standing, could not move very much. We went in to UVRMC emergency room, which is a far piece to drive, but the nearest large hospital.

After some checking in routine, which I do not remember too well, they gave me a room with a bed that I did not care for. I spent several days laying on that bed, unable to turn or move much. Difficult to imagine more uncomfortable way to spend your time. Perhaps it is convenient for the nurses or something. It wasn't worth a thing to me.

They provided nurses that I did not want or need.

Some of them even made derogatory remarks about me. When I could not get to the bathroom, one of them said I was a fat pig for peeing the bed. He apparently believed that I had done so on purpose, perhaps to make things difficult for them. Admittedly, I am a fat pig, but that had no relevance to the problem, and doesn't seem to be my fault. I was already feeling very bad, but when I overheard that comment, I just wanted to crawl and hide.

None of the doctors offered to explain what was happening to me, which I still am not very clear about, but several of the nursing staff took it upon themselves to give a long and detailed lecture about how difficult I was making it for them by forcing them to clean up when I could not make it to the bathroom. Basically, they made it known that I was not worth taking care of, and they really did not want me there. That feeling of being where I was not wanted was strongly reinforced until I left. I did not get the impression that any of them were anxious to help me.

The hospital forced me to wear a monitor that continually watched to see if my heart was behaving itself. It did so without any monitoring whatever. I thought the device was troublesome, but the nursing staff acted like I would shrivel up and die instantly without it.

I was plugged into an IV the whole time I was there. I don't know why. They never explained to me,just kept pumping in more stuff. The IV hookup made it difficult for me to move around, which quickly became uncomfortable, and finally insufferable. I resorted to locking myself in the bathroom to escape,

Some of the care nurses were nice, but mostly they were rather indifferent. Two of them stood discussing what to do about my problem with urinary incontinence as if I wasn't even there. Finally they settled on fitting me with an adult diaper, which did not help the problem, and made me feel much worse.

The doctors came and went. Dozens of them, I think. Mostly I think they did not even bother to talk to me. At least I don't remember.

They would order drugs, therapy, and treatment for me without even taking the time to speak to me about it. I am charged for thousands in services and treatment, and I don't even remember receiving them.

At one point thay gave me a CT scan. I do remember getting that. Apparently, it did not show anything interesting. Another wasted procedure that the hospital bills thousands of dollars for.

Some stroke patients also get another kind of brain scan routinely. The doctors skipped it for me, after they found out that I don't have medical insurance. Was it economizing or discrimination? I don't know, but my suspicions were raised after other similar experiences. My experience leads me to believe that doctor's health care decisions are strongly influenced by whether they think the subject has insurance that will pay for things that are not wanted or needed, just to run up the bill.

The bottom line seems to be that people with good health insurance NEED good care. The rest of us should just feel lucky that we get anything.

My parents finally brought me back to their home after three nightmare days and nights at the hospital. More than anything else, I just wanted to die. The hospital is the most miserable place I have ever spent time. I hope I can end my life cleanly and not spend time malingering in such an awful place. And I will certainly never feel good about the money they charge for the services. Good health care, it seems, is only available to those who can pay a lot. Every one else presumes on someone else's good will. It may or may not show up.

I hope you never end up in the hospital. It is a terrible place for sick people.

Next installment:  Helping and Being Helped

Rehab progess 1

I'll tell you my friends, trying to get through this is no fun.

Yesterday, I sat down and cried because I couldn't get into my own car. Many a time I have privately laughed at another who had such difficulty. Now it is my turn to be laughably pathetic.

Last night, we camped out in the desert, something that used to be so unremarkable. I had to relive myself, of course. I could not stand up. My legs simply refused, even though my need was in other ways urgent beyond the point of denial, or even control. I ended up making a big stinking mess of myself, though my body took care of it's needs. My clothes were soiled, and I made a mess of it all. This from an operation I have been taking care of routinely since I was an infant. I cried tears of anger and frustration. This kind of routine humiliation robs me of all personal privacy and dignity. Fortunately, my friends are understanding and patient, and they tactfully ignore the bad odors.

I cannot possibly put on my boots, although I practiced doing this with the occupational therapist. The problem is, my right-hand boot wants to skitter away while I'm trying to wriggle my toes into the boot. For now, the solution seems to be velcro fasteners on sandals, and remembering not to try to kick the dog. Oh, well. The price we pay for life.

My right hand has recovered some usage. I can type the right-hand letters okay. With a lot of backspacing, that is. Don't know when if ever I'll be back to normal strength.

Seems like so much I have lost, so many things I used to do without even thinking. Whenever I start to feel sorry for myself, I remember the man I saw in the rehab center with no legs. At least I still have something.

I am glad I still have something. Even though it is not much compared to what I used to take for granted.

Tuesday, August 19, 2008

Life is Pain

Life is pain, Highness. Anyone who says differently is selling something. (Westley, "The Princess Bride")

Is there a reason to endure more pain?

I don't know. I suppose there might be. Why not wait and see for yourself? No one can say what the future holds. Maybe good things, maybe bad. Maybe more of the same.

That's all I have to sell. Lots of maybe's. That better be good enough.

Wednesday, August 13, 2008

The Purpose of Being (Single)

Reality intrudes, makes people uncomfortable.

They are secretly pleased to consider themselves alone, unique. It give one a great sense of superiority to think oneself alone. Then we see, the flood of miserable refuse, with the same complaints, and realize, "They have the same complaints!" Thence the unpleasant conclusion that someone is WORSE OFF than me. And self-pity no longer has a semi-rational basis.

I felt this at rehab sessions, where I am rapily recovering from a debilitating stroke. It would be so easy to feel sorry for myself. But for the evidence that there are people much worse off than me. I have continuing weakness in my right leg -- but some of these people have no legs.

Whatever my condition, whatever the problem, I can easily find someone worse.

This doesn't give permission for me to join the ranks of the miserable. Instead, it challenges me to move on. It is difficult, I face serious challenge, and with real handicaps. I'm not what I used to be. But still good for something, and still, I try.

I'm still trying.

I'm still trying.

(Sometime VERY trying!)

I find it particularly relevant to read parts of Elder Wirthlin's conference talk. Whether or not others are sensitive to my troubles, every indication is that the Church is aware of the problems, and someone cares...
True disciples of Jesus Christ have always been concerned for the one. Jesus Christ is our greatest example. He was surrounded by multitudes and spoke to thousands, yet He always had concern for the one. “For the Son of man is come to save that which was lost,” He said. “What man of you, having an hundred sheep, if he lose one of them, doth not leave the ninety and nine in the wilderness, and go after that which is lost, until he find it?”
This instruction applies to all who follow Him. We are commanded to seek out those who are lost. We are to be our brother’s keeper. We cannot neglect this commission given by our Savior. We must be concerned for the one.
Today I would like to talk about those who are lost—some because they are different, some because they are weary, and some because they have strayed.

Some are lost because they are different. They feel as though they don’t belong. Perhaps because they are different, they find themselves slipping away from the flock. They may look, act, think, and speak differently than those around them and that sometimes causes them to assume they don’t fit in. They conclude that they are not needed.

Tied to this misconception is the erroneous belief that all members of the Church should look, talk, and be alike. The Lord did not people the earth with a vibrant orchestra of personalities only to value the piccolos of the world. Every instrument is precious and adds to the complex beauty of the symphony. All of Heavenly Father’s children are different in some degree, yet each has his own beautiful sound that adds depth and richness to the whole.

This variety of creation itself is a testament of how the Lord values all His children. He does not esteem one flesh above another, but He “inviteth them all to come unto him and partake of his goodness; and he denieth none that come unto him, black and white, bond and free, male and female; . . . all are alike unto God.”  (Elder Joseph B. Wirthlin, Concern for the One)
As much as we try, people make mistakes. The ideal expressed by Elder Wirthlin is seldom realized. But we try, together we try.

I will keep trying.

Tuesday, August 12, 2008

The Purpose of Life

All the talk criticizing those who complain is a bunch of hot air.

When you are in trouble, you still have individual rights and feelings. Think about what advice you get, then make up your own mind.

Hard to reject well-intentioned advice, but this is what it comes down to. Either you control your own life and destiny, or you surrender your will to those who profess to “help”. Often, the most erstwhile are the hardest to get rid of. I’m always suspicious of “helpers” that won’t go away.

Ultimately, dying is always available as a last alternative. The worst thing about death is the finality of it. Difficult to change your mind, once you are dead. But I’m sure that death has saved a lot of needless suffering for appropriate individuals. In any case, don’t rule it out as the final option. Just be sure, before taking that route.

My dad has argued many times when I expressed my own suicidal feelings, “Wait for tomorrow. Maybe it will be better.” I have never found a valid refutation.

So, what does that mean, for hopeless miserable people? A lot of are sitting around, waiting for things to get better. Maybe they will, maybe not. Why not keep ourselves busy in the mean time? Perhaps we can even do something .worth while, even just by happen stance.

Maybe life has no purpose, other than that. I’m not sitting around waiting to find out...

Interesting quote from Elder Hales came in email yesterday...
When you attempt to live life’s experiences alone, you are not being true to yourself, nor to your basic mission in life. Individuals in difficulty often say: 'I’ll do it alone,' 'Leave me alone,' 'I don’t need you,' 'I can take care of myself.' It has been said that no one is so rich that he does not need another’s help, no one so poor as not to be useful in some way to his fellowman. The disposition to ask assistance from others with confidence, and to grant it with kindness, should be part of our very nature.
" - Robert D. Hales, "We Can’t Do It Alone," Ensign (CR), November 1975, p.90

While I agree that we have an obligation to overcome pride and accept assistance from others, that doesn't relive us of all individual responsibility. We are obligated to accept help from more able, after all we can do. Who knows what limits to put on "all we can do"? It must be quite a bit, because even a half-witted dysfunctioning feeb like me hasn't found all my limits yet. Not yet...

After further deliberation on this matter, I have come to the conclusion that there is no grand "purpose of life" anyway. I don't need permission from someone else to come up with my own. I am pursuing it with every enthusiasm. And as far as I am concerned, you are all welcome to do the same.

Monday, August 11, 2008

Stroke update

I can put on my own pants, now. Well, almost.

Right-handed stuff is difficult. At least, my fingers and my thumb are working -- somewhat. A couple of weeks ago I could not even move my right arm.

The biggest challenge I am facing now is learning to drive a car with a right foot that is recalcitrant and slow. It feels like someone else's body. But, one thing at a time, I suppose.

I still sound and feel retarded when I try to speak.

Perhaps recovery just takes time. I should be happy that I did not die.

I guess I am. I guess I am.

Sunday, August 10, 2008


The newspaper headline reads, "LDS leader's '07 address still causing controversy".

Do you know who the controversy is with? Still the same ones who questioned the counsel originally. Controversy existed in such minds before they even heard the talk, it just provided an opportunity for them to complain and be heard.

There will always be complainers. Some have good cause. Some do not. No reason to derail the train just for them, in any case. But thats what they seem to want.

The original Deseret News article:

LDS leader's '07 address still causing controversy
By Carrie A. Moore
Deseret News
Published: August 8, 2008
An address last fall by the general president of the LDS Relief Society on motherhood continues to raise discussion and disagreement nearly a year after it was delivered.

Panelists addressing the topic "Mormon Motherhood: Choice or Destiny?" at the annual Sunstone Symposium on Thursday discussed why a talk by Sister Julie B. Beck during the October 2007 General Conference troubled them and hundreds of others enough to support a Web site — whatwomenknow.org — to counter many of Sister Beck's characterizations.

The Web site has garnered signatures from more than 500 women and several hundred men since it was put up in the weeks following the talk.

Five presenters spoke for more than an hour about their belief that Sister Beck's talk, and other recent messages by LDS leaders, narrow the role of women in the church by minimizing the contribution of those who don't have children and stay at home to raise them, whether by choice or through circumstances they can't control.

During the question and answer session that followed, one mother of five lamented that the remarks didn't reflect her experience, or that of many other LDS women, and asked that her choice to feel validated by staying at home with her children be respected. Several audience members approached her in the hallway at the Sheraton Hotel following the session and a heated discussion ensued.

Janice Allred, president of the Mormon Women's Forum, said as she listened initially to Sister Beck's remarks, she thought "there will be trouble, but the firestorm that followed surprised even me." She said she had seen some indications in recent years that the church "has become more accepting of women's roles and parenting in the wider society. But once again, women felt they were being handed a script for their lives that they couldn't follow."

Sister Beck's talk mirrored gender roles outlined in the church's "Proclamation to the World on the Family," Allred said. The document "gives a woman only one role. The single woman exists in the proclamation only as daughter of heavenly parents waiting to fulfill her destiny ... Being a mother is a good and a necessary role, but a good mother must first be a good person, with roles and needs outside that of mother."

Lori Winder quoted one secular author regarding motherhood, saying, "We are fed up with the myth that it's the most honorable and important thing we do ... and if you don't love every second of it, there is something wrong with you." She said "motherhood is prescribed essentially as the only role for women eternally." She said Sister Beck is "in many ways the only voice within the patriarchal structure of the church. The weight falls on her to illustrate our experience." Yet there is a "gap between Beck's rhetoric and (some LDS womens') experience, particularly as women's influence expands in the secular world."

Margaret Toscano, a professor of classics at the University of Utah, said she doesn't think LDS women "reacted strongly enough" regarding "women's roles and person-hood in the church structure." She said many "patriarchal systems use women as the primary tool for keeping other women in line" and "patriarchy gives women protection for playing by its rules."

She said she believes Sister Beck's talk created a flash point that focused on her as a person, "rather than critiquing the underlying system." She said the backlash "reflects the idea that it's more acceptable to question women's authority than men's in the church."

The address also elevated LDS women as "those who know the truth about motherhood versus secular women who are ruining the family," she said, adding "most women want to be good mothers and care deeply about their families."

Emily Benton, who holds a bachelor's degree from Brigham Young University, said she became less active in the LDS Church after marrying a returned missionary and then divorcing while he was in law school. "The Mormon map for women is limited and can sometimes leave you feeling lost." For her, "a lot of it came down to feeling that I didn't belong in a singles ward or a family ward, and my mother is worried because I haven't married and procreated like my sisters. My success isn't a grandchild."

She said that during the time she was away from the church, "I learned integrity ... After being away for a while I realized I missed the gospel," so she returned "with a new perspective ... Ultimately I'm at church to learn how to become a disciple of Christ." She said that while at church, she "would be better served if" the messages focused on love, compassion, service and personal worth rather than, as Sister Beck said, learning how to be the best homemakers in the world."

Janet Garrard-Willis, a Ph.D candidate and blogger for Feminist Mormon Housewives, said "motherhood really is meaningless unless there is a person being the mother in the first place." Her blog saw "an immediate firestorm following Beck's talk," and it was "not my liberal friends who were most upset — they just tend to disregard her.

"It was my deeply conservative friends who believe every word out of a church's leader's mouth came from Jesus Christ. They locked themselves in the bathroom and cried about it." Because she had great difficulty getting pregnant, Garrard-Willis said she had a "free pass to pursue a tenure track job. Once people in the church found out why I didn't have kids, they were very sympathetic and I was given a real place in every ward I've ever been in.

"I felt I was being incorporated into the structure with an identity apart from other women. That was fine, but I didn't realize that identity was contingent on my remaining childless." She said she experienced the "erasure of a significant portion of my identity when I became a mother."

She said the LDS Church does provide "a skeleton architecture for building an identity for women in the church, in part through its Young Women program, which emphasizes values such as faith, knowledge, good works and integrity. She suggested "a larger discussion about fatherhood" in the church, and "how traditionally female attributes are integrated into his role."

Following the presentations, Camille Aagard was the first to address the panelists.

"I wish I were on this panel. I'm the mother of five, I'm not a Ph.D candidate, and that's not in my future." She said she has "always had a very confident sense of self and I attribute that to being raised in the church. I feel powerful. I don't need anything more than what I do, but I want that mutual respect" that panelists had discussed for those outside traditional LDS roles.

"I want to know that if I were in the Toscano family, there wouldn't be little remarks about me behind closed doors. I feel so deeply respected when I hear motherhood is near to divinity. There are 96 pictures of me on my blog with my arms covered up to my elbows in vomit and (expletive deleted). I did have a five-year career, but this is a much harder game I'm in. I don't want to be in a forum where I'm with Latter-day Saints and feel under-valued. I heard words like 'confined' and 'mindlessness."' Aagard said she is raising four daughters "to emulate me, maybe, without letters after their name. It's not something small I'm teaching. I ask you to show the same respect for me."

Aagard was approached by several audience members in the hallway after the presentation, defending her right not to be offended by what church leaders say about her role. One man told her, "You're a slave and you don't even know it."

"I'm not a slave," she shot back. "That's pathetic that you would say that to me."

E-mail: carrie@desnews.com


Thursday, August 07, 2008

Lessons from the Forest revisited

As I have pointed out before, the forest does not seem to question the purpose of existence.

I do.

Someone quotes a famous philosopher as saying, "The unexamined life is not worth living". What does that say about those of us who feel that big chunks of life are just something to suffer through? Those who are wont to contemplate their navel are welcome to do so -- just don't expect me to be enthralled by the view.

Monday, August 04, 2008

The Charge Of The Light Brigade

Alfred, Lord Tennyson 1854

Half a league half a league,
Half a league onward,
All in the valley of Death
Rode the six hundred:
'Forward, the Light Brigade!
Charge for the guns' he said:
Into the valley of Death
Rode the six hundred.

'Forward, the Light Brigade!'
Was there a man dismay'd ?
Not tho' the soldier knew
Some one had blunder'd:
Theirs not to make reply,
Theirs not to reason why,
Theirs but to do & die,
Into the valley of Death
Rode the six hundred.

Cannon to right of them,
Cannon to left of them,
Cannon in front of them
Volley'd & thunder'd;
Storm'd at with shot and shell,
Boldly they rode and well,
Into the jaws of Death,
Into the mouth of Hell
Rode the six hundred.

Flash'd all their sabres bare,
Flash'd as they turn'd in air
Sabring the gunners there,
Charging an army while
All the world wonder'd:
Plunged in the battery-smoke
Right thro' the line they broke;
Cossack & Russian
Reel'd from the sabre-stroke,
Shatter'd & sunder'd.
Then they rode back, but not
Not the six hundred.

Cannon to right of them,
Cannon to left of them,
Cannon behind them
Volley'd and thunder'd;
Storm'd at with shot and shell,
While horse & hero fell,
They that had fought so well
Came thro' the jaws of Death,
Back from the mouth of Hell,
All that was left of them,
Left of six hundred.

When can their glory fade?
O the wild charge they made!
All the world wonder'd.
Honour the charge they made!
Honour the Light Brigade,
Noble six hundred!