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By Annie Giddings (A "sermon" given on August 21st, 2005 at the UU Church of Middleboro) 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". I have multiple chronic illnesses - Lyme disease, Babesiosis and Bartonella (all tick borne diseases), reactive hypoglycemia, Hashimoto's thyroiditis (an autoimmune thyroid disease), and Neurocardiogenic syncope (NCS for short). I don't want to focus on the details of what each illness is but I do have a wealth of information if you're interested and I'll give you a brief overview of my journey through these illnesses. I was clinically diagnosed with Lyme disease in 1997 when I was 15. I, as many other people with Lyme disease, essentially diagnosed myself because the medical community as a whole does not understand the disease and the difficulty of diagnosing and treating it. Since my diagnosis I have been on and off antibiotics, both oral and IV, with ups and downs but never completely regaining my health. Although we don't know for sure, my doctors believe that I have actually been infected since I was 8 or younger and the severe illness that began in 1997 was evidence of a re-infection. Lyme disease is difficult to diagnose and treat. The symptoms often mimic other diseases, giving Lyme the title of "The Great Masquerader". Many people are misdiagnosed as having MS, Chronic Fatigue Syndrome, Fibromyalgia, Rheumatoid Arthritis, and even Alzheimer's or Parkinson's. Most people who have Lyme disease have also been infected with at least one other tick borne disease (referred to as a co-infection) which complicates the diagnosis and treatment, as each infection requires a slightly different combination of medications. Treatment needs to be individualized and in late stage or chronic cases, long-term antibiotics (for months or years) are the only course of treatment. There is no cure for the disease when it becomes chronic, only a hope for long-term remission and the ability to keep it in check with a strong immune system. The other things I have been diagnosed with have possibly all been caused by, or at least worsened by, the Lyme disease. For the most part, they have not been difficult to handle, except for the NCS. NCS is a form of Dysautonomia (autonomic nervous system dysfunction) which can cause many problems including low blood pressure, wide swings/sudden drops in blood pressure, excessive fatigue, exercise intolerance, dizziness, fainting/near fainting, gastrointestinal problems, nausea, insomnia, shortness of breath, seizures, cognitive impairment, visual blurring or tunneling, and migraines. Dysautonomia is usually treated with medications to elevate blood pressure or increase fluid retention which in turn helps to stabilize blood pressure. In my case, medications didn't help and I now infuse a liter of saline everyday, which has helped keep the symptoms in check. Since being diagnosed with Lyme disease, I have always tried to remain optimistic and hopeful, although at times this is very difficult. One of the many difficulties of living with Lyme disease is that it is not a well understood or accepted disease. The medical community is at odds over how to diagnose and treat it properly and we, the patients, are stuck in the middle - finding it difficult to obtain a diagnosis, traveling hundreds of miles to see a knowledgeable doctor, and struggling to get insurance approval for proper treatment, which is an all too common occurrence among Lyme patients. And, since it is not well understood in the medical community, there is little hope for society as a whole to understand it, especially since it is an "invisible illness". Those of us with invisible illnesses do not reflect on the outside how we feel on the inside and we just look too good to be sick! Niki, a teenager living with Lyme disease, said, "I've had to fight to get people to understand that even if I have a smile on my face, some days I still feel [horrible] on the inside." And I know that all of us with invisible illnesses have heard the dreaded but well-meaning words, "But you LOOK good." This leads to other frustrations and ignorance of chronic Lyme disease. When someone says they have cancer, for example, there's a general understanding of what that means and, even if they don't look sick on the outside, people know there is an internal battle being fought. But, when I tell someone I have Lyme disease, the understanding is simply not there. And when I throw in the fact that I've been battling it for almost 8 years, the general response is, "Oh, you're better now though, right?" There seems to be no frame of reference for someone dealing with Lyme disease long-term. It is difficult to live with a chronic illness and not know for sure if things will go up or down tomorrow. Deb, a mother and grandmother with Lyme disease, said, "I've had friends who have had cancer - some have died, some have recovered and resumed very active lives, whereas we simply seem to exist in limbo..." 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, but I know I'm in it for the long haul. |
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