hi michael,
I have read the mime, but for some reason -I haven't ever liked mimes?

I have found this out in my own life -we must all live in the day we have.
here is a sermon from a woman who has lyme disease

hope helps -
By Annie Giddings: A teenager/ and lyme disease patient
A "sermon" given on August 21st, 2005 at the UU Church of Middleboro)

Dealing with chronic illness has shaped and changed my life significantly so when I was asked to run a service this summer, choosing a topic wasn't difficult.
Chronic illness is ever-present in my life.
Dealing with chronic illnesses has taught me things I probably wouldn't know otherwise - how to be thankful for the smallest things, how to be compassionate and sympathetic to others without feeling sorry for them, how to sort out what's most important, how to find peace in the midst of turmoil.

In "A Delicate Balance: Living Successfully with Chronic Illness," Susan Milstrey Wells says, "Chronic illness isn't a gift in the traditional sense of the word. We don't want it or need it, it never fits, and we can't take it back. Only the most idealistic among us would say that we are grateful to be sick. But once we become ill, we can resent and reject the experience, or we can learn from it." (p. 217) In this spirit, I choose to make the best of a bad situation and not get lost in self-pity. I choose to think of myself as a survivor of chronic illness, even though I am still in the midst of surviving, because I do not want to become a "victim".
When one is faced with an incurable or chronic illness, it is often difficult to believe that healing is possible and it often feels like hope is slowly draining away. But even in these situations, there are opportunities for positive things to happen. In "The Nature of Healing", Ruth Rudner writes, "Healing. The dictionary says it means 'to make sound; to cure of disease or affliction.' Yet, even where curing cannot happen, healing is possible. The aching heart can become whole" (p. 57). In this frame of reference, healing is not about the physical body, but about the spirit, the soul. I have recently been taking time to meditate everyday. This is now becoming a source of hope for me, hope that even in the midst of feeling horrible physically, I can find some mental and spiritual calm.

In "The Anatomy of Hope", Dr. Jerome Groopman writes, "Hope is one of our central emotions, but we are often at a loss when asked to define it. Many of us confuse hope with optimism, a prevailing attitude that 'things turn out for the best.' But hope differs from optimism. Hope does not arise from being told to 'think positively,' or from hearing an overly rosy forecast. Hope, unlike optimism, is rooted in unalloyed reality. Hope is the elevating feeling we experience when we see - in the mind's eye - a path to a better future. Hope acknowledges the significant obstacles and deep pitfalls along that path. True hope has no room for delusion. Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to surmount them" (p. xiv).

I do struggle with this at times. It is hard to look at a bad situation - one that most people have not been through and therefore cannot fully understand - and find the good in it. It's like being stuck in a never-ending winter, like the one we had this year, but still being able to look outside and smile at the drifting snowflakes. Susan Milstrey Wells says, "Sometimes I'm a bit uneasy talking about how our lives have changed for the better since we've developed a chronic disease. We can all rationalize the worst circumstances, but that doesn't make them good. Are we putting our heads in the sand when we find meaning in a life with chronic illness? I don't think so. After all, we could find that our lives are devoid of meaning and rail at our bad luck, but then we would be both sick and miserable." (p. 223)
I don't believe that hope means believing that things will be fine and not worrying about what will happen, refusing to deal with reality. When dealing with chronic illness, I don't think hope means holding onto the (usually) false belief that, if you're only patient enough, a cure will happen. Hope is much more than that. Hope is not only being able to look at the bleakness of winter and see something to marvel at, it's also believing that there is a way to transform your suffering into something beautiful. Far from being an attempt to escape reality, it is a way to embrace it; Being able to come to terms with the way things are but not accept everything as inevitable. There are parts of being sick that I do not accept and that I'm not okay with. I don't accept the situation as the way things will be forever, but as the way things have to be right now.

Hope does not deny pain, it does not reject grief and mourning over the life that has been lost. Hope helps to keep everything in perspective, it helps show you that there is the possibility for something good, something bigger than anything you were bound for in your old life. And hope is believing that, in the midst of the storm that seems impossible to overcome, there is something there to cradle you. I don't believe that hope is reserved for those people who believe in a greater power, but I know that, for me, the thought that there is something bigger than me is comforting.

When I'm having a hard time with life, one of the most natural things for me to do is to sit by the ocean, listening to the waves crashing to shore. The sounds comfort me. The beauty comforts me. And when I look out across the ocean and think about its magnitude, I can't help but feel a little closer to that greater power, whatever it may be, and that comforts me, too. At those times, my belief in a bigger plan is renewed and I know that, one way or another, things will turn out okay. Maybe not the way I think it should turn out, but it will be the way it's supposed to be. A quote by Edward Teller explains my thoughts on this much more eloquently than I could ever put it. "When you come to the end of all the light you know, and it's time to step into the darkness of the unknown, faith is knowing that one of two things shall happen: Either you will be given something solid to stand on or you will be taught to fly." So I keep moving forward into the darkness and so far I haven't fallen.

In the end, it's hard to deal with chronic illness. It's hard to be faced with losing the life that once was, or that never was but should have been. It's hard for me to see all my friends graduating from college, moving away from home, starting new jobs, and doing all the things I thought I'd be doing now. But I've realized that, no matter how stubborn I am, my body just can't keep up and something has to go. I just try to fill my time with things I enjoy that don't require a lot of energy or concentration - watching a good movie, listening to music or books on tape, and chatting with friends online. And every once in a while I have a better day and make it out to do something fun.

I also try to keep some level of humor and light-heartedness in my medically oriented world. I have nicknamed my port-a-cath "Winnie the Port". And, keeping with the theme, my IV pole is Piglet and my portable IV pump is Eeyore. I joke around a lot with a good friend I made through an online group for teens with Lyme. We can be really silly when we talk online, no matter how badly we're feeling, and that helps us forget about aches and pains for a while.

My hope is that I will make a difference, leave my mark on the world. In the words of

Ralph Waldo Emerson, "Do not go where the path may lead, go instead where there is no path and leave a trail." I don't know where my path may lead me,
yet I know I'm in it for the long haul.