Living with chronic illness

The past week has been a very interesting one in terms of reflecting on all that is involved in living with a chronic illness.

You have to deal with the physical problems.
You have to deal with the emotional feelings.
You have to deal with the existential questions.

You are invisible. You look healthy. Nobody knows anything unless you tell them. Therefore you have to ask if you want to talk, if you want sympathy, if you want support. You always have to ask. And you have to ask over and over again, because people don't "remember" from week to week that you are ill. And when you remind them, then you are perceived to be whining, to be negative. Sometimes it's easier just to be silent. And that is very lonely.

I made an appointment to talk to Sarah on Wednesday. It seemed important, as a support person, for her to know something of my "story" -- of the WHOLE picture, not just the here and now. On Tuesday, I got a call at 9:30 am to sub for Susan at the library. I was deep into my "inner" process in preparation for the next day. And I had planned to catch up on laundry and grocery shopping. And I was tired. So I felt very torn. I wanted to help out. I needed the hours and the income. But I found myself paralyzed with indecision, and when the tears started, I had to say no. I NEEDED the time off, more than I needed an extra $125. I thought, wow I MUST be ill then.

I took laundry over to my friend Darlene's house that afternoon. Darlene has diabetes and other health issues. She, too, KNOWS what living with chronic illness is all about. It felt so good to talk and share our experiences, and our fears, and hopes, and frustrations. She understood in a way that healthy people cannot. That is priceless.

I felt good about my talk with Sarah. Maybe I felt it gave the situation some meaning to be able to help someone in the pastoring profession to gather a little more insight into how to minister to chronic illness. In fact she shared that someone has asked her to preach a sermon on chronic illness, and asked if I could suggest any resources. I said I could WRITE that sermon! And it might be a good exercise to do so. I was entirely serious. I also recommended a book that had given me some insights into the grieving process that goes along with all the life changes one is forced to make -- Ambiguous Loss : Learning to Live with Unresolved Grief by Pauline Boss. What do you do with all the anger, when your choices are either getting angry at yourself or getting angry at God? Both are pointless. So the anger sits there with nowhere to go.

Sarah asked me why it was so important to have a "reason" for the circumstances of one's life. It occured to me later, that people who struggle with ambiguous loss, seek by any means possible to control the situation. Having a "reason" gives you a feeling of empowerment -- you aren't just a victim. I think anyone who suffers wants to know that it has a purpose. And so the constant soul searching. The trick is, at some point, to let go of needing to know. To be content that it HAS a purpose, without needing to know what, exactly, that is. But I am not one who lets go of the seeking that easily. Even the seeking can bestow its own purpose, and give life some grounding.

I've started thinking about the need for a chronic illness support group at Mayflower. Maybe that's just another way to give meaning to all this, nevertheless, the inner urge is there. I had talked about this some years ago with our previous pastors. But I had too much healing of my own to do then. This time, I think I have the energy to put into it. I think I would like to learn how to facilitate a support group. I know there are training programs out there. I know that I would have support and assistance from Darlene and others. Mayflower has talked about developing a "wellness" center as part of our ministry. Right now that is taking the form of Tai Chi classes, and adult education programs on various health topics. But there is no support group. My own need to talk, to share, to be understood, to be VISIBLE right now, makes the need seem obvious to me. But I will think about this more, to be sure that I have the energy to follow through, and that it isn't just a passing interest, before I approach one of the pastors.

In the meantime, I am simply doing everything I can to love myself and take care of myself. I spent several hours after our meeting on Wednesday playing the piano in the sanctuary. Since getting my piano from my folks I haven't done that much. But it felt good to be in that space, a little more isolated and "protected" than playing at home. But not really isolated. I noted several times, people sitting on the bench outside the sanctuary, listening. I was glad to be sharing, even though I felt woefully rusty.

On Thursday evening I asked my online friend, Kathryn, who has gotten some good "information" on health issues at our Tuesday night meditation group, to see what she could get on the colitis. She got the information from a guide (hers or mine?) called Hamiel. Most of it just confirmed what I have already discovered to be good foods through trial and error. But one thing new was suggested : marigolds, or calendula. I stopped at Whole Foods on the way home and got both a calendula tincture and several ounces of dried flowers to make my own infusion, which I did this afternoon. I am drinking a tablespoon or so every hour. It certainly won't hurt to try it. Far more benign than the hydrocortisone enemas, which Hamiel suggested alternating with the Rowasa. I am too sensitive to it to use it every day, which is the recommended treatment. Even the Rowasa, he said, would be better 3 days on, 1 day off. So I will try that too.

Tomorrow the choir is singing both services at church. It is our annual All Saints music service where we honor and remember those who have died in the past year. Lots of good music. The only problem is I cannot predict what will happen. Normally it takes at least an hour back and forth to the bathroom in the morning. It's usually okay by 10am and I can then leave for work or whatever. But tomorrow I have to be at church at 7:45. I can control it somewhat by not eating after 7pm tonight, and not having my morning tea until after the first service. Nevertheless it is quite possible that I will have to leave the service at some point, and/or spend the entire period between services in the bathroom. That isn't really the kind of visibility I want to have. But we'll see how it goes. I want to sing. Maybe the calendula will make a difference already by then.

Healing

We've had quite a discussion going on one of my lists about what it takes to be a healer, and that boils down to what it takes to heal oneself - the "wounded" healer archetype. It's been very interesting within the context of struggling with my own recurring health problems, and attendant feelings that a flare up represents a failure of some kind. You feel betrayed by your body, by your emotions, by not being able to keep up the positive attitude 24/7, and wondering yet again, just what is the purpose of this? Why, why, why? Why do we suffer? Why is it so difficult to let go of fear and anxiety? Why can't I just WILL myself to have perfect health, and the perfect job, and the perfect relationship? Does anything I do or believe make any difference at all?

On the 14th I asked Michael, through Karen Woosley:

For the last ten days or so I have been having a flare-up of
ulcerative colitis. It has been over two years since the last
one, and I was hoping I had "beaten" it. Can you offer any insight
into what has triggered it, and how can I most quickly restore my
digestive health?

Laurel, you are living proof as to how one can turn upon oneself
through worry and "holding things in".  You see, then that there
is a direct connection between your inability to really let go of
things and this condition that also does not seem to let go? We see,
then, that the quickest way to health would be to adopt a healthy
diet, not only a physical diet of food but more of one of thought.

We see you doing much good work of late in meditation and positive
thinking, but realize that this only goes so far if you do not
actually believe in it. It is impossible to tell someone how to
change beliefs, but we see that you are attempting to do this in
the only way really that you can.

For this we commend you and say again that [take a deep breath]
"everything will be okay".  Really.

I found this channeling to be frustrating. For one thing, I don't want to believe that there is such a direct connection between thought and physical health. Certainly most Western doctors would absolutely pooh pooh the whole idea. And I think there is a dangerous tendency among New Age thinking to bully ourselves and others with the notion that we create our reality. All illness, all accidents, acts of violence against us - all were "attracted" somehow by our (supposedly) less than perfect thinking. But this isn't just New Age thinking. Our society has had this engrained in us for years. The assumption that rape victims must have done something to deserve it... Poor people are lazy, and just don't want to work hard... Only gay people get AIDS... God sent Katrina to punish the wicked people of New Orleans...

On the other hand, I can see all too well the difficulty I have had in really letting go of things. And I'll be the first to admit, that I often DON'T believe that things will be okay, even while I am busy telling others that I refuse to worry about how things will work out anymore. But as they say in AA, "Fake it 'til you make it." In psychotherapy it is standard practice to work on changing behavior, knowing that changing beliefs will follow -- it just takes a little longer. So I AM doing it the only way I can.

On the 16th, there was another free channeling opportunity, this time with Shepherd Hoodwin:
LAUREL BRADSHAW: What do I most need to know right now?

M: Of greatest benefit to you currently is more lightness and
play.

Laurel: I've been given "bringing forth artisan-like
creations to the physical plane" as my True Play. Can you
suggest other "play" that might help create the lightness
that I need?

M: Situations that lack stress and create enjoyment such as
visiting museums, enjoying lunch with a friend, or doing a puzzle.

Ah yes...I'm VERY familiar with using play as a way of distracting myself. Now "play" for me might be translating an old Norse saga, or reading Harri Potter in Welsh, but whatever works...... I think the trick for me is to find something that is MORE mentally consuming than the illness. Healing so often seems to be a process of distraction. At least for this scholar.

The pieces started coming together with this comment from someone in the discussion on healing: "Sometimes the most healing thing is to demonstrate that you can have issues and pain and totally love yourself for it, and have fun and joy WHILE you are processing all of them."

And then Sarah's sermon this morning on the "greatest" commandment: Love God, love your neighbor, love yourself. So often it is in loving ourselves that we find the greatest stumbling block. Agape, according to the Michael teachings, is the ultimate goal of all sentient evolution. We're all going to get there. Somewhere in there - in reducing everything to Love, or turning everything over to Love, is the "answer."

And now, I think, it is time to go play.....

Colitis

Adding to all of my uncertainty about things lately, my ulcerative colitis has been flaring up. It has been about 3 weeks now - the first flare in over two years. To be honest, I can't remember a longer remission. So perhaps this was to be expected. On the other hand, I immediately start taking "inventory" to see what I might have "done" to cause it. A futile exercise at best. At first all consuming, physically, emotionally, and mentally, I am now relaxing and just doing my best to maintain a healthy diet. It is tempting at first to eat practically nothing. Maybe that instinct is good. It lets the digestive system rest for a few days. Unfortunately, one can't keep it up. It adds to the fatigue and the low blood sugar seems to add to the emotional fragility. Then it becomes important to eat at certain times in order to avoid being stuck in the bathroom 12 hours later when having to get to work. So far, so good.

I'm sticking pretty close to my "safe" list of foods: applesauce, apple juice, oatmeal, bananas, potatoes (white and sweet), rice, cooked squash, cooked spinach, cooked cabbage, cooked carrots, carrot juice, rice protein powder, soy milk, tofu. No raw vegetables, not even lettuce, no wheat bran, no corn, no dairy except yogurt. Adding flax oil to everything I can. Putting slippery elm bark in my tea. Taking extra vitamins and supplements. Yesterday and today have been pretty good days, and I am sensing that my overall energy level is improving. The depression of the first couple of weeks has lifted. The sores on my lips seem better (herpes has a field day when the immune system is out of whack...)

Someone asked me what it feels like. I sidestepped the answer, but I'll give it a shot here. Imagine that you have 4 or 5 marbles stuck up your butt. They aren't going anywhere. It is achey and crampy. And every time you have to go to the bathroom, it has to somehow get through those marbles. So instead of going once in the morning, you go maybe 8 times and there's a lot of blood and mucus. Then when it does finally move, it moves very quickly, and you hope to God that you make it to the bathroom in time. Then there's the persistent fatigue, and the constant low-grade fever, and sometimes you just feel achey all over. The inflammation can spread to the joints and my back. The back pain gets worse at night, so I have to get up and walk around. But too much walking and exercise makes my hips and knees and sometimes even elbows hurt. The inflammation isn't just in the colon. I never feel warm enough, and I crave lots of hot baths. I've even started putting plastic wrap over the overflow drain so I can keep the water high and have a sort of hot tub. But I think the worst part maybe - (after all, you can become fairly stoic about the physical pain and inconvenience) - is how emotionally vulnerable it makes me feel. It becomes very difficult to control emotions, crying at the drop of a hat. Fears and anxieties become magnified and difficult to shake. Everything feels out of control. There's a whole letting go process emotionally that takes weeks. I must be doing quite well, if I've reached that point in only 3 weeks. I hope this will be the turn around point now.

DIARY : Oct. 23

Time to play catch-up again. Is it just me, or is time speeding up?

Grand Rapids : I never applied for the job. When I got around to looking it up and researching the position I realized that for some reason I had been visualizing St. Cloud. That would have been a large system not too far from the Twin Cities. But Grand Rapids is a small town and a small library up near Duluth. A position there would never go anywhere within that library. It would have been much like Oneonta - a director, a reference librarian, a children's librarian, maybe a cataloger, and some part-time staff. I decided a move would not be in my best interests. I still have 15 years at least before retirement, and I don't plan to still be in an entry level job. The trouble is that most jobs above entry level are filled from within. Better to stay here and hope for something else to open up. Something where there is room to move upward.

And by now it has - I've applied for two positions within the Hennepin County system. One is a full-time cataloger. Okay, it's been 8 years since my last cataloging position, but on the other hand I have experience with music cataloging and with languages, both of which were mentioned in the job announcement. The other position is for a part-time librarian at Plymouth. Although it would be part-time, Hennepin County provides full health insurance for their part-time people. It would be slightly more hours than what I have with Carver County, and probably slightly higher pay as well. For that matter, perhaps it would be possible to keep the Carver County job, if we could work out which days where. If not, then I would still be on the subbing list for Carver County and could supplement hours that way.

As long as I'm talking about career stuff, here is part of my weekly email horoscope that came today:

"Jupiter will be moving into the career zone of your chart on Tuesday, LAUREL, which ushers in a new era of luck. Jupiter will remain in Scorpio for a year from this time. So make the best use of these influences to get ahead with your plans. Whether you want to start your own business, or try a whole new area of endeavor, you have the cosmos behind you. But you also need to put in the effort to make it work, as you are probably aware. So start making contact with relevant companies to get that interview or promotion. Neptune turns direct in your sign, which may help you to focus and regain your sense of perspective after a very confusing few months. You will have a better chance of manifesting your vision rather than being confused about what it actually is."

The validity of these kinds of horoscopes aside, I'll take all the positive messages (and luck) I can get! The two job listings close on Monday. It has been a confusing few months, and I could use some new clarity going into potential job interviews. I did recently pass my 6-month probation at Waconia with flying colors. The email class is ready to go, and it is scheduled for Friday with one person signed up. The children's librarian will be on maternity leave imminently, giving me some extra hours at least through the end of the year. And the subbing budget is looking slightly improved for next year.

About a digital camera: heh heh this has manifested itself already. Within a week of posting that I wanted one, my father emailed to say that he had bought himself a new one, and would I like to have his old one? It is perhaps not what I would have bought for myself, but it is a good camera, and I am enjoying learning how to use it. It won't replace my Canon Rebel, but it will be just the thing for getting good pictures of the beaded flowers, taking on trips, and taking lots of pictures of the cats trying to get just the right pose. Perhaps one of these days I will even figure out how to add pictures to this blog.

Speaking of my father, he gave us a bit of a scare by having another heart attack a little over two weeks ago. Fortunately, he was attended quickly and there was no heart damage. A new stent was put in, and he was back home within 3 days. It was a much more matter-of-fact occurrence than the first one 7 years ago. I would have preferred a LITTLE more information than my mother's email "Dad's home. We're fine."

About Alice: I wrote another long letter to her last month, hoping to reconnect. So far no reply. I do not know if she is even getting my letters, although nothing has been returned as undeliverable. So I wait and hope.

BOOKS

Music : A Very Short Introduction by Nicholas Cook. 2000

Book Description
What is music? How is it constructed? How is it consumed? Why do you enjoy it at all? In Music: A Very Short Introduction, Nicholas Cook invites us to really think about music and the role it plays in our lives and our ears. Drawing on a number of accessible examples, the author prompts us to call on our own musical experiences in order to think more critically about the roles of the performers and the listener, about music as a commodity and an experience, what it means to understand music, and the values we ascribe to it.

This very short introduction, written with both humor and flair, begins with a sampling of music as human activity and then goes on to consider the slippery phenomenon of how music has become an object of thought. Covering not only Western and classical music, Cook touches on all types from rock to Indonesian music and beyond. Incorporating musical forms from every continent, Music will make enjoyable reading for beginner and expert alike.

Funeral Music by Morag Joss. 1998
Book Description
To the ancient Romans, the healing waters of Bath belonged to the goddess Minerva. Today they belong to the gods of commerce, as tourists teem, shops prosper, and the incense of gourmet food rises to the English skies. Among the throng is Sara Selkirk, a world-class cellist who came undone in a Paris performance. For Sara, taking a break from performing has given her a chance to look at what’s missing from her life– and even at a case of murder.… The killing occurred in the famous Roman Baths, and the victim was the museum’s director. Knowing several people close to the investigation–from a potential suspect to a detective who cajoled her into giving him cello lessons–Sara discovers a talent for making sense of things. But like a Bach fugue, the pattern she grasps is more complex than it seems. And as she moves down a trail strewn with secrets and damaged lives, a chilling story begins to emerge: of greed, envy–and a killer performance that may not be quite finished yet.

On tape:
The Glass Lake by Maeve Binchy. 1996
Book Description
Kit MacMahon, growing up in the lakeside village of Loughshee, seems to lead a charmed life. She is the loved daughter of Martin MacMahon, the kindly local pharmacist, and Helen, his beautiful wife. She has a little brother, Emmett; a best friend, Clio, and a host of other friends.
But Kit worries about her mother. Helen MacMahon does not fit in with the people and the ways of Loughshee. She wanders alone by the lake night after night -- until the dark windy night when she disappears and only her overturned rowboat is found near Loughshee's shore.
Kit grows up in the small village without the mother she has loved and so staunchly defended, determined to carry out her mother's last wishes that she should make something of her life. Though she moves to the city, Kit is constantly drawn back to Loughshee and the people who live there -- Clio Kelly and their love/hate relationship; Clio's father Dr. Kelly, whose sister-in-law Maura has her eyes on Kit's father; Philip O'Brien, who has loved Kit since childhood; and roguish Stevie Sullivan, who runs the garage and rules the affections of every woman for miles around. The Glass Lake tells the story of how Kit MacMahon carries out her mother's last wishes; a story of how faith and courage can be rewarded.