On not being that sick anymore and hope.

October 5, 2007

Some of you who have been reading this for a while or who know me know that I was sick for a long time. No one really knew with what. Various diagnosis included chronic fatigue syndrome, allergies, candidiasis, irritable bowel syndrome, low DHEA, “everything is just out of wack and we don’t know why” (a doctor actually once said this to me), and what I like to call the “you’re just fine maybe you should get therapy” diagnosis. Nobody really knew, is what it came down to. On top of this, I also inherited a pretty strong predisposition to depression and anxiety from both sides of my family which seemed to be totally unrelated to any sort of situation – just a general predisposition to sadness and anxiety.

This was quite serious from about 16 until I was 20 and had been problematic but sort of touch and go since then. Until about a year and a half ago when I started going to an acupuncturist in Cambridge. Over the year and I half I have been seeing her, things have improved a lot. Less sadness. Less stomach aches. Less headaches. More energy. Until. One. Day. They were gone.

I joined a gym. Three years ago, walking the five minute walk from my car to classes was an ordeal. I can’t believe I can join a gym, exercise, and still be able to breath and get out of bed and move my arms and legs without exhaustion. I take the lowest doses possible of antidepressants, and I think it is only a short time until… until those are no longer part of my life.

I write all of this because a lot of people seem to find this blog by googling chronic illness or sickness or chronic fatigue syndrome. When I was sick NOTHING anyone told me helped. I was sick of recommendations of doctors. Of treatments. Of cheerleading about how well I was handling it. Sick of people telling me I looked pale and maybe I should see a doctor. Sick sick SO sick of trying to explain to ANOTHER f’ing doctor my symptoms, previous attempts at treatment, and of this constant feeling that because no one could figure out what was wrong with me that somehow, maybe, I wasn’t really that sick and was sort of making myself sick because, well, you know, I was struggling with depression.

So this is not a cheerleading session to those who are experiencing chronic illness. You might get better. You might not. But, I guess what it is a statement of hope that you really might not be like this forever. That there are people in the healing arts – doctors, alternative medicine practitioners, other chronically ill folks who believe you. Who will listen to you. I guess I just want to say that you can get better, even when it looks pretty damn dark and miserable.

I am so thankful to be so much better. Thankful for my acupuncturist who listens to every little thing that my body does and feels and wants to know it, and doesn’t judge or imply that maybe it isn’t there or maybe it is because of something I am doing wrong.

We are taught that our bodies – our sickness – somehow happens to us. Or that we cause it. When it is really neither. We are in relationship with our bodies – we are our bodies – yet, they have a mind of their own. Both. And. And neither.

May we love our bodies. May we be fully in them – listening to them – open to the healing that can take place, yet gentle on ourselves knowing that incongruence between body and soul and spirit is both real and something we might be able to draw closer together. When I was sick I hated my body not cooperating with me. Yet, I had to also to come to terms with it being me. Me being it. Yet, also not.

This might not make sense. But I think especially for those who have been there, it might. I hope it does. I wish you so much hope. And a life without pain. Without that constant need for assessment – how is my stomachkneeheadfoottoe today?

In deep deep thankfulness for not feeling tired and sad and sick so much of the time,

and with heartfelt prayers for those who are still struggling with this,

E


On Dying Well

July 22, 2007

We have been in Germany, where my partner is originally from, for two weeks. The closest friend of their family is 87 and in the last days or weeks of his life. It was very frustrating on several levels, not the least of which is my inability to understand or speak German to him. So I just had to sit there and smile and say hello and good bye and see if I could figure out what was being said by picking up a few words. Before I started ministerial training and went through the death of an aunt and two grandparents, I had what I think could reasonably be described as a death phobia. It started when I was in elementary school and went on for a very long time, really up until the past few years. I was very overly preoccupied with people I love dying, very nervous when they left to go to the store or on a trip, or really anywhere that something would happen to them. I thought about death a lot – my own or my loved ones – and generally couldn’t talk about it or think much about it without getting quite distraught. This was not a normal “gosh I don’t want my loved ones to die.” It was really a huge problem.

Taking a classes at divinity school and being a student intern minister, as well as needing to be strong through the deaths of my family members, helped me get over this. It just sort of faded away. Thank goodness.

All of this is to reflect on the challenges of dying well, both in the U.S. and in Germany. Something I could not have even began to think about until recently. My family members all had hospice care, which somehow I imagined to be widespread in Germany which it is not. My grandma died with friends and family around her, people coming and going either to simply be present to her, or to bring food, or to share memories – to laugh, eat, and cry. This is how people should die. In their homes, with their loved ones, with skilled nurses and hospice workers asking the right questions, preparing people for what is to come, reassuring, and listening.

Frederic is dying in Germany alone in a room in a home for old people or people with disabilities. No one has spoken to the family, nor to my mother-in-law (who is his best friend) about what to expect, how to best be with him, nor have they spoken to him in a respectful or loving way. He is a patient. He said they are rough with him when they bathe him. We were there to say goodbye before our flight, and although he is confused and can’t talk much, he said, (in German), “Gipsy, I want out.” Gipsy is my mother-in-law. He wants out.

He is an old person that they are waiting to die, washing only because it is their job, not cleaning him up in his bed soon enough so that when we came in he was laying there half naked in his own waste, distraught and confused. And alone. Dying alone is horrible.

It was interesting to see my minister-mode turn on so quickly and so naturally, and it was reassuring to me about my calling. What were his wishes? Perhaps he wanted to talk about his life? Did he have a living will? Perhaps you should offer to put the bed up a little more? I left when I saw him half-naked, knowing of course that he might prefer privacy from a visitor. Perhaps we should only enter the room one at a time – three of us seem to overwhelm him… all these little things I did and thought that seem so basic, but seemed also desperately needed in a situation where everyone was sad and upset and confused.

It was painfully frustrating to not be able to do more. To know that he lay alone in his room because it was simply not the thing to do to be there. His family was not there even every day. He was in the care of underpaid staff.

This is not to criticize anyone involved really, because it seems like this is just how it is done, but to wish for a different system. And to look forward to being able to contribute more through my ministry to the idea of dying well. Both through example, but perhaps eventually, through training others.

As my partner and I think about the possibility of a baby in the coming years, and what it takes to make a good birth and bring a life into the world with minimal medical intervention and trusting the wisdom of the body and our love for ourselves and the new life, and it seems equally important for us to remember what a good death means. How we can slip from this world to the next with as little pain as possible, and as much love and comfort as possible. Because we do not like to talk about death, and because we don’t like to think of it, it seems that it can too often be put in a small room in a big institution, and we try to leave it either to staff who can change adult diapers, or to doctors and machines who try to “save us” from what we cannot be saved from – old age and the slowing down of bodies that just happens.

We are in the process of getting life insurance, and our finances more in order, along with arranging our own wills and living wills. It seems important for us all to do this to save our families from the challenges that Frederic’s family has faced in deciding how to proceed and what to do as he faced his last moments on this earth. Let us all do this to save our families the anguish it can sometimes present and help making answering hard questions easier at the end of life, as well as to think about what a good death would mean to us.

I have also faced the challenge of comforting my partner through all of this. I am a firm believer in some sort of world/life after this on here on earth, and he is not. Wow, does that make it hard to comfort someone facing death. Often “They have had a good life” can be a good approach if that is in fact the case – however, when the dying person has not had a good life – and there is nothing more to look forward to, that appears to be even more of a bind. But perhaps that is for another post.

In peace and prayers for Frederic as he leaves this earth,

Elizabeth


Resources on Ministering to Someone Who is Chronically Ill

October 30, 2006

Regular readers, friends, and family know that I have struggled with chronic illness since I was in my early teens. Certainly, I am at a point in my life where my history with being sick and my current health doesn’t rule my life as it once did. Generally, I think I live a pretty normal life, perhaps with just a few more bumps in the road than a generally healthy person would face.

That said, I am still knocked over sometimes in realizing the difference it makes in one’s life to have been or be chronically ill. It gives you a new lens with which to see the world – in both a not-so-good way but also in some more positive ways. I realize that no matter how much better I get, I will bring that lens with me.

I was just reading the blog Journey to Somewhere which is written by a lovely woman about my age, who goes by the pen name Penguini, and who is in the congregation where I am the intern minister. I wanted to point it out because I am impressed with her ability to capture life as “a sick person” through her writing. I think for ministers, friends, or family who want to be there for someone who is struggling with chronic illness (or who has come through a chronic illness), Journey Toward Somewhere can be a helpful resource.

Journey to Somewhere also pointed to But You Don’t Look Sick, an online magazine “about living life to the fullest with any disability, invisible disease, or chronic pain.” In particular, Penguini pointed to an article on But You Don’t Look Sick called The Spoon Theory that I think deals well with helping friends and family better understand the day-to-day reality of chronic illness. Among other things, there is an article, 10 Tips for Visiting Someone Who is Sick, and there are also book reviews, and even a section called “sick humor” which is, of course, always important when facing illness. :)

Thanks to Penguini for her blog, writing, and, in general, her wonderful self. May all of those out there who are facing illness find healing, strength, and hope.

If you know of other good resources, please feel free to list them in the comments.


More on Chronic Illness

August 22, 2006

I just read this article in the New York Times which is just soooo not what someone who has been sick on and off for years wants to read. It is an article about somatization syndrome. I’ve never heard of it before now, but it seems to be a situation where someone has aches, pains, fatigue, dizziness, or other various symptoms for which doctors cannot find a medical explanation. So you know what? Then it becomes a psychiatric disorder. I googled this and there apparently are actually people who really do have this. That is, physical problems are caused very directly by psychiatric issues and the people need psychotherapy. All well and good. But for those of us who do not have a psychiatric disorder and something actually is causing our fatigue, stomach aches, head aches, decreased immune system functioning, or whatever symptoms there are, this gives doctors such an easy way to say it is all in the head and just get some therapy. Can’t figure it out? Just chalk it up to somatization syndrome.

This reminds me of my most recent doctor who suggested I meditate as a response to my health concerns. Maybe she secretly thought I had this. Ugg. Luckily, the first site that comes up when you google this is a site that helps reassure those with Chronic Fatigue Syndrome or Fibromalgia (two very difficult to diagnose disorders that often interfere quite a bit with one’s every day life) that a doctor who is familiar with the various disorders will know how to differentiate between them. Of course, the problem is that many many doctors don’t know how to recognize or treat either CFS or Fibromalgia, along with 100s of other rare or complex problems that people live with for years because they are not correctly identified. Sigh. Sigh sigh.

While I’m certainly glad that people with somatization syndrome are able to be well-diagnosed and get treatment, I just hate to think about all the people who actually do have a non-psychiatric medical issue that are put in the “somatization syndrome” box. It is just so frustrating and sad that so many people suffer for years with medical issues that doctors cannot adequately recognize or treat because medical training and practice is so scientistic and regimented – so unholistic and so inattentive to the complexity of medical problems that don’t fit into any of the pre-established boxes.


Thinking About Being Sick for About 10 Years

July 9, 2006

This post is absolutely not to get sympathy or pity but it is supposed to be a little spiritual post to share some of what I have learned about health and wellbeing….

The situation is that when I was about 14 or 15 I started getting sick with various ailments and got sicker and sicker throughout my teenage years and no one really figured out what was wrong. I went to a lot of doctors who just sort of didn’t know what was going on. We finally settled on chronic fatigue syndrome, but that was just sort of a best guess. When I was about 20 and started seeing holistic doctors and seeking alternative treatment, I got less sick and it has been less bad since. But not gone. And now, the week that my mom visited for her longest visit EVER I got very very sick with multiple infections. I am pretty much always more or less tired. Think how you feel after you run maybe a mile or two. I feel like that really most of the time. So I’ve been laying around all week feeling sorry for myself but as I sit in my cozy little apartment and listen to itunes while surfing uublogs, I felt it important to honor a body that is more sensitive to her environment and reflect on how difficult it is to be in our bodies as our bodies rather than as vessels that get us around, like a little car you can take to the mechanic if it isn’t working. So often, I get very grumpy and declare that I’m just going to go to a doctor and insist that he or she make me better, whatever it takes. But in the moments when I am more mindful, I remember that Elizabeth’s body is not like Elizabeth’s Scion (that’s my cute little car). Of course, there are things that require a doctor to treat you – broken leg, breast cancer, etc. I’m not saying that doctors can’t help in the healing process. But what my body constantly reminds me is that it is part of me and I must be in my body and take an active role in caring for myself as a whole being – body, mind, spirit. I would probably not have the nerve to say if I had it to do all over again that I would go through my years of serious and less-serious-but-still-really-not-nice health challenges again. But, since I have gone through this and continue to, I am amazed at how much I learn from it and how much we are taught by our society that health is about the absence of being “sick” and after a bout like I’ve had this week, I forget how wonderful it is to feel pretty good rather than really bad. Hallelujah for the small joys of life!

What if we were taught early on that if we hold onto hurt, to trauma… that this will be held not only in our minds but our bodies?

What if we were taught that sickness is not something that needs to be “fixed” but a message our body is sending us that our systems are in distress and need attention – either physical, mental, or spiritual – or all three?

What if care of the soul was understood to be essential to health and well-being?

What if doctors learned to listen to patients? What if our doctor was one part of our approach to healing, rather than the mechanic who will fix us?

What if our culture prioritized health rather than productivity?

What if we didn’t feel guilty when we needed to rest more? To take care of ourselves more?

p.s. Speaking of small joys of life, super-companion-animal woman of our church who has cats, dogs, and, if I understand her correctly, a tourtiuse, will probably be adoptiong Harriet and Max our little foster kittens. This woman is super smart and kind and just overall cool (and her husband is equally neat although not as in love with animals as she is and as W. and I are) and she is such a good mama to her companion animals – we’re so excited that Max and Harriet might get to move in with her we can barely stand it. Max and Harriet are psyched too :) We can visit them! Yay!


Grandma Update

May 4, 2006

A big thank you to those who emailed me or posted comments about my Grandma. Her funeral is on Monday — she passed away peacefully on Wednesday with family around. In a very Kentucky sort of twist of events, the funeral was supposed to be on Saturday but it had to be changed to Monday because it interfered with the church tractor pull. At least some people in this world have priorities straight :) Of course, she would completely understand. I found it amusing.

One big disappointment is that I won’t be able to go to New York City with our church youth group. I went to New York City on a “Summer in New York” trip in 1996 (ten years ago!) with my youth group and have been back many times with various groups to learn and teach about all the things in New York City that one does not learn about in rural Ohio. Urban poverty. Different cultures. Coffee shops (I had my first cappuccino in New York at the Used Book Store Housing Works Cafe which is still in operation). Homelessness. Ultra-rich people. And all sorts of other things. I lived at the Bowery Mission. The youth group will also be visiting the Bowery and seeing a service like no UU service they have ever seen. If you want the free meal in the evening at the Bowery you are required to go to the service. Sort of like food for oil a la Iraq only it is food for God. There is a big push to get people saved as soon as possible. There are a few amen-chanters near the front and many of the others sleep through the service. I can’t wait to hear what the youth think of it. Or Tricia (our minister) for that matter.

Wish I was going. But New York will always be there.


Times of Crisis, Need of Comfort

May 3, 2006


I got off the phone with my mom about a half-hour ago and she told me that hospice says that my grandma will probably only live another few hours or maybe a day. What surprises me a little is how I run back to those religious places in my life that are most comforting even if I’m not even sure I believe them. I want to kneel down and pray. I want to talk to God, not the UU God that I know, that presence that is within us and among us, but my old God that was this big guy with loving arms living up in the clouds. In times of crisis and sadness and just struggle, there is something about going back to that non-intellectual place we were when we were younger. That love of familiarity and that non-complex deity that was just perfect and loving and comforting. I guess the great thing is that the divine can be both of those things. God/dess doesn’t always have to be complex or heady or in need of ten different adjectives (the great mystery, the spirit of life, interbeing…) but the divine is all of those things and more. For me, at least, both simple and complex. Both personal and diffuse. The great thing, theologically, for me about UUism is that we acknowledge that different paths work for different people and that we are all just sort of fumbling toward making sense out of something that is truly beyond words. Beyond our words. It is nice not to have the responsibility or the pressure to systematically develop a theology where it all fits together, that really gets to it all, but to say “This divine, this non-divine, this something, is so great, so loving, so complex, that we simply cannot get all of it at once into language.”

So, Grandma, mother of 12, grandmother to 26, wife to Arnold, devout Catholic, peace, and love, and gratitude to you as you go to that which is beyond our words.