Sunday, February 26, 2012


I am sitting here tonight, reflecting on the week that just passed. As the week approached last Friday, I knew that I had huge challenges and a huge amount of work. Last Sunday, I had a 15 hour non-stop work day to kick things off. This past week was Ash Wednesday (church and school obligations), the spring musical at school meaning that we were in "hell week" for rehearsals, the visit of a top ranking Salesian to our parish and attendant functions, and the moving of the office of the Lupus Foundation of Florida. I thought, "That's more than enough for a 60 year old woman with lupus."

But that was not enough. A week ago Friday, I received a message that my estranged father was in Hospice care and would be happy to see me. That night, I went on to paint sets at school, but took time to go to the chapel to cry and pray. The next morning, my oldest son (age 36) went with me to Hospice. I had no idea what would happen, but I was determined to do the right thing. While there, I found out that my father died about an hour before I arrived. The week was spent trying to figure out who was going to arrange his service (when you are estranged these things are complicated) and being attacked for stepping up. I had to remind myself that I cannot control what other people do or say, but I CAN control my reaction. It was hard not to let old rusty buttons be pushed. But I held firm.

Tonight, the whole insane week is behind me. I am still standing. I am still healthy. Resilience is an amazing quality. I learned resilience by going through many hells. Each time I came out on the other side, I had a new understanding of my ability to make it through trials and create a new life. I never thought of it as resilience until I read this pamphlet from the American Psychological Association, "The Road to Resilience."

And so, in quiet solitude, I rejoice in my resilience. My prayer is that you can reach deep down inside and find your resilience too.

Saturday, February 25, 2012

Typhoid Mary

We have all had the uncomfortable experience of being around someone who has been diagnosed with cancer or who has a loved one diagnosed with cancer. We don't know what to say. We don't know how to act. We don't want to ignore it, but we don't want to acknowledge it either.

When otherwise healthy people are around those of us with chronic illnesses, it's not much different. You see, we are a walking, breathing reminder that it can happen to them to. In fact, more than one in three Americans has a chronic illness.

In order to make sense of this, healthy people try to figure out why we are sick and they are not. They are looking for a way to convince themselves that they are going to be OK. They are looking for something in us that they can blame for our condition.

As I was wheeled into the emergency room with congestive heart failure brought on my lupus, my friend said, "If only you stopped smoking you would not be here now." Recently, a lupus patient shared the fact that her brother blames her lupus on her weight. (Of course the steroids used to treat the lupus might just have something to do with that!)

In these situations, it is helpful for us to take a step back and put things in perspective. What these people say sounds terribly judgemental. When we hear it, we are angry and defensive. But if we realize that this kind of blaming is how they make sense out of what happened to us and that they are desperately trying to reassure themselves that they won't suffer the same fate, we can choose a different reaction.

Saturday, February 18, 2012

I Don't Know How to Do This

Yesterday, I came home from a long and challenging work day to find a message on Facebook from my first ex-husband. My father is in hospice with colon cancer and would like to see me. My father and I haven't spoken or seen one another in 26 years. I am going this morning. I don't know how to do this.

When I got the word, I called or emailed 3 of my strongest "go to" people. The chats were brief. There is hardly any advice one can give in situations like this. They know that and so do I. I was able to step back just enough to look for the right resources. Hospice chaplains know how to help people do this. I will meet with the chaplain before I go in to see my father.

When we are diagnosed with a chronic illness, we don't know how to "do this." I certainly didn't. But after a period of deep despair and depression, I had a moment of clarity that changed my life and my relationship to my lupus. I thought, "If I am going through this, then other people have gone through this. Some of them have come out successfully on the other side. Some of those people must have written books about it. I will find them and I will learn."

In our pain, whatever pain that might be, it is easy to isolate ourselves. It's easy to crawl in a hole and pull the hole in after you. It's easy to believe that you are the only person who is suffering. The truth is we all suffer at one time or another. Reaching out to people who can light our way makes all the difference.

Friday, February 17, 2012

Are Your Ears Connected to Your Mouth?

The busy-ness of life is stressful for most people. For those of us with chronic illnesses it is downright overwhelming. I have a very challenging 10 days staring me in the face. We are moving the lupus foundation office. Ash Wednesday is next week which means additional preparation for church and for school. One of the high ranking Salesians is visiting the parish. I have two youth Masses and substituting at another parish in the evening. And this weekend I have 4 performances of Alice in Wonderland with my students and there is still work to be done on the sets. There are other things, but this list is more than enough.

Reflecting on this past week, I observed myself listing these activities when I was speaking to people. The more I heard myself articulating the list, the more agitated I became. I am not sure where this script came from. Perhaps, I am trying to validate how hard I will be working by telling other people. Perhaps, I am making some kind of check list.Perhaps I am trying to impose order on the week. Whatever the motivation, the result is the same. I am borrowing stress from the future.

What we tell ourselves and what we tell others can bring us peace or turmoil. Working with lupus patients and people with chronic illnesses, I often hear well-rehearsed litanies of complaints. I used to recite my own litany, especially to friends and family. My hands hurt. I am so tired. The drugs weaken my immune system. My feet are so stiff in the morning I can hardly walk. And on and on...Perhaps I was trying to validate my suffering. Perhaps I thought that saying it out loud would make my suffering real to other people. Whatever the motivation, concentrating on the list caused stress which in turn, made me feel worse.

One night, after playing for Shabbat services at a local Reformed Jewish congregation, an elderly lady who was upset by the sermon went to the rabbi and saidd, "So, Rabbi, are your ears connected to your mouth?" Do we really listen to what we are saying? How is what we are saying impacting our health and our life? Are YOUR ears connected to YOUR mouth? Take a day to be a witness to what you say.

Saturday, February 11, 2012

Writing Yourself Well

Feelings buried alive never die. Everyone has difficult emotions from time to time. Most of us have gotten pretty good at burying them. If you are living with a chronic illness, you have more than your share of unpleasant feelings. The only way to get past these emotions is to express them. But the feelings are so terrifying that we dare not take the lid off the pressure cooker. We are afraid that if we express even the smallest part of these feelings, we will explode and our arms and legs and head will fly off into space. Keeping feelings buried takes all of our energy, energy that would be better used to heal.

I don't know about you, but no one ever taught me constructive ways to express painful feelings. Last year, I took a Mindfulness Based Stress Reduction workshop and a relationships workshop from a wonderful local psychologist, Beth Meeker. Beth uses a combination of meditation, journaling and small group sharing. Her workshops are typically 5 hours long! Beth recommended The Artists Way: A Spiritual Path to Creativity. There are short, thought provoking chapters, followed by tasks for that week. Some of those tasks are journaling prompts. One of the things the author, Julia Cameron, recommends is what she calls "Morning Pages." She encourages the reader to write three pages in a journal first thing every morning.

Since writing my "Morning Pages" nearly every day since August 2011, I have finally been able to express some tough emotions and let them go. It's no coincidence that my health has continued to improve. I hope and pray that some of you will give journaling a chance. Let me know if you do and please share your experience.

Wednesday, February 8, 2012

Using Exercise to Improve a Chronic Illness

Welcome Jenna Walters who graciously offered this guest post to my my blog.

The benefits of exercise are undisputed for healthy individuals, and cancer patients and others with chronic illness also enjoy improved life-quality with an appropriate exercise regimen. The National Cancer Institute encourages exercise for cancer patients and survivors as not just an option, but a priority.

Exercise and Cancer Treatment
A panel convened by the American College of Sports Medicine (ACSM) set out to develop guidelines for exercise and physical activity for cancer patients, such as sufferers of Mesothelioma, that are undergoing active treatment or have concluded treatments. The panel found abundant evidence that physical activity promotes an improvement in life-quality for patients with chronic illness. Patients on chemotherapy or radiation therapy are capable of more exercise than previously thought and even light exercise is proven to be more beneficial than none.

Beginning Small and Setting Goals
Range-of-motion exercises under the guidance of health-care professionals prepare the patient for independence following treatment or surgery, beginning with passive exercises – those where the patient's limbs are moved by another person – if necessary. Setting daily, weekly and monthly goals and tracking improvement keeps the future in positive focus. Many cancer survivors of all types, from lung cancer to testicular mesothelioma, return to previous levels of physical activity, and even exceed them, when a sensible program is instituted during recovery.

Basic Guidelines for Patients
The American Cancer Society encourages patients to exercise as much as possible. Walking, weight training and stretching all contribute to muscle tone, blood flow and deep breathing. Any form of exercise can be adapted to the patient's current strength levels.
The patient should stop exercising immediately and consult her health-care provider if she experiences increasing weakness, loss of balance or falling, sudden or unusual pain, dizziness or vision problems, or numbness in the limbs.

The Caregiver's Role
According to the American Cancer Society, caregivers can play a pivotal role in the patient's exercise program. Caregivers may accompany patients on walks and outings and be upbeat and encouraging, remembering that it is beneficial for the patient to be as self sufficient as possible.

Anything that involves movement is technically exercise and a cancer patient must recognize that what constitutes exercise should not be based on previous activity levels. Perceived exertion during health likely required far more intensive activity than during the period of chronic illness. Walking where one previously ran is not a defeat. Modestly adjusting to new circumstances leads to enjoying a cheerful self-image and a positive outlook for the future.