Sunday, January 25, 2009

Filling the Void

Chronic illness leaves huge holes in our lives. Some of us can’t work. Some of us can’t do all the things we used to do for friends and family. Some of us have to give up living on our own. There are a thousand little losses. Days that were once spent working, volunteering, and interacting with others turn into days spent on the couch or in bed wondering if we are worth using the oxygen we take from the air. We are left wondering who we are and why we are here.
Nature abhors a vacuum. The empty spaces must be filled. Our losses are our losses. We can’t change that. What we can change is what we choose to fill the void, to fill the empty places in our lives. Chronic illness does not excuse us from being members of society and it does not excuse us from giving to others. Mark the loss, grieve, and move on as soon as possible. Instead of being “stuck” with your old life, you have a chance to pick and choose what you will put into your life and that is an amazing opportunity!
Why are you sitting here reading? Go do it now!

Sunday, January 18, 2009


Whether or not people profess faith in God or follow a spiritual path, they find themselves trying to bargain their way out of desperate situations. The old adage, “There are no atheists in fox holes” could easily apply to chronic illness. One of the stages of grieving, and remember we are grieving for our own losses, is bargaining. Whether it is bargaining with God as we know God or bargaining with something as vague as the cosmos, people will try to bargain their way out of the illness. The process starts when the patient looks back at his or her life and decides that their less than perfect life style or attitude is the cause of the sickness. The next step is making promises about future behavior in return for relief from the sickness. Bargaining sounds something like this, “If I get better (or You make me better) I promise I will (eat more vegetables, stop kicking the cat, be a pleasant person,_____). Bargaining makes some faulty assumptions. The first is that we caused our illness. The second is that our illness was inflicted on us as some kind of religious or cosmic punishment. The third is that whoever we are bargaining with will remove our sickness the same way they gave it to us.

Whether or not you contributed to your illness is only important in that you have learned to stop doing that. What happened happened and nothing can change it. While prayer and meditation can be very helpful in managing chronic illness, playing “Let’s Make a Deal” is not. Fortunately, the bargaining stage usually doesn’t last very long. Instead of spending your energy figuring out what constitutes an enticing offer, put your energy into something you know will pay off and make a plan to manage your disease.

Sunday, January 11, 2009


(Yesterday I turned 57. How cool! I am happy that I am looking down at the grass instead of up at it. Six years ago next month, the doctors told my sons not to expect me to live. I got calls from people I did not ever want to talk to and was baffled, but morphine does weird things to your brain. They didn't tell me that I was not supposed to live, so I lived! And as I begin a new year of my life, I am glad I am here to share this with you!)
Why do I think so much about dying? Why do I feel like this is the beginning of the end?
Everyone knows that all living things die, including people. Yet somehow we don’t expect it to happen to people we love and we certainly don’t expect it to happen to us. Everyone who is born dies, in fact, we are in the process of dying from the minute we are born. When we feel healthy and vibrant, we simply can’t wrap our minds around our own death. Just like teenagers when they drive recklessly or engage in other risky behaviors, most of us think we are invincible.

In Western cultures, we have sanitized death. We preserve bodies so that visitations can go on for days and burials can be delayed. We remove death from the home and place it in hospitals, hospices and nursing homes. We put make up on the deceased to make them look alive. Visitors can often be heard to say, “Doesn’t he/she look wonderful?” while looking at a deceased loved one. We keep children from knowing about death. Is it any wonder that we generally act as if death will never come to us? In many non-Western cultures, death is a normal part of life. Death is not sanitized and death is not hidden. Ten of the forty traditional meditations in Buddhism have to do with contemplating corpses!

Chronic illness reminds us of our own mortality, not once, as in a heart attack or bad accident, but daily. Aches and pains, medication and limitations, doctor visits and lab tests are constant reminders that our bodies are not functioning as they should. We study each new symptom trying to figure out if this is the beginning of the end. The stress itself makes the symptoms worse and we begin a downward spiral. We become anxious and our muscles tense causing panic attacks and pain. Sleep eludes us and the fatigue makes everything worse. Fear and depression become constant companions.

Contemplating death is not a bad thing, fixating on it is. We will die when we die. All the worry in the world will not add one minute to our lives, but is certainly may shorten them! Rather than spending time crying, “Woe is me,” we can value every moment that we have. What would you want the epitaph on your grave stone to say about you? What would you want your obituary to say about you? What would you want those who are left behind to say about you? Are you living your life right now in such a way that this will be true? If not, what are you waiting for? Chronic illness can be a tolling bell or a wakeup call. It’s up to you.

Karen nearly died from an acute episode with her chronic illness. After coming to terms with her own mortality she purchased a cremation plan and wrote her funeral instructions and service. Karen wants her epitaph to read, “She left the world a little better than when she came in,” and “She squeezed every drop out of life.” She’s still with us and her disease is in remission!

Sunday, January 4, 2009


I started the Christmas Crud early this year, just before Thanksgiving. For most of my life, I got sick on Christmas and stayed sick until Easter or later. I noticed that other people didn’t get sick and stay sick for so long, so I figured I was just flawed somehow. Staying home and resting never fixed it, so I learned to keep pushing. In 2003, however, the annual Christmas Crud got really bad, bad enough to land me in the hospital for 14 days, bad enough to place me on disability for 4 years. And, thanks be to God, bad enough to finally get the diagnosis of systemic lupus erythematosus with major organ involvement. I am in remission now, chemically induced, but I will take any remission I get!

And then came this year’s Christmas Crud. At first, I brushed it off. It got better and worse and better and worse, then it got nasty. Antibiotics didn’t touch it. On Christmas Eve, I sounded like a cat gacking up a hairball and I am sure that disrupted the congregation’s worship, even though I continued to play through the gacking. On Monday, I was truly miserable and for the first time in a long time, I began to catastrophize. I took deep breaths to try and figure out if I had pleurisy or pericarditis again. I watched my urine for bubbles that could indicate a nephritis flare. I imagined the worst and hoped it would not happen.

Here is the catastrophe scenario. The lupus flared, you will lose your jobs, you will crash, your life is effectively over. BAM! Even though I know better intellectually, even though I have learned to use cognitive therapy to ward of this kind of thinking, it crept in. When you live with chronic illness, it’s easy to take every little change in your health and body and imagine that is a bell weather, a sign of the beginning of the end. But awareness can head off this catastrophizing. If you are aware that you catastrophize, then you can be ready and replace your thinking and change how you feel. Plan ahead. Have replacement thoughts ready.

And by the way, I am a lot better now!