Chronic illness and aging erode identity. We can't do a lot of what we used to do and we can't be who we used to be in relationships with others. We find ourselves grieving for who we used to be. The only way out is to go through that grieving process. It's like we lost someone we love, but that someone is us and part of us is still here grieving. Once we recognize that we are grieving, we have taken the first step to healing.

Invisible Chronic Illness at Church Today

I am a church musician. I always hang out before and after services to talk with parishioners. After over eight years in this parish, there are lots of people I care about. There are also new people and medium new people. Today I was talking with a lady who uses a walker. I only know her a little bit. She asked what else I do besides work at the church. I gave her the run down and told her that I write. "What do you write about?" she asked. "Chronic illness," I responded. She said, with just a tad bit of arrogance, "What on earth do you know about chronic illness?" I smiled and took a deep breath, "Well, I have systemic lupus erythematosus with major organ involvement. Of course you can't see that by looking at me. I have had kidney failure, bone marrow failure, congestive heart failure, cerebritis and was given up for dead when I was 51. After 4 years on disability I crawled back to the work force. That's when I came here." She sat in stunned silence. That's OK.

I an see her disability because she uses a walker. She cannot see my disability because it is totally inside. Regardless, please know that 1 in 3 Americans have a chronic illness and that most of these illnesses are invisible. Other people do not know about our invisible illnesses and our invisible struggles. We don't know about theirs. But if you put three random folks in a room, one would have an invisible chronic illness.

We are only alone if we don't talk to one another. You think no one understands. He or she thinks no one understands. If you held hands your isolation would be over, at least a little bit.

Michael Finnegan Begin Again

There was a man named Michael Finnegan
He had whiskers on his chinnegan
Wind blew them off but they grew in again
Poor old Michael Finnegan
Begin again

Several women friends in my life are recreating themselves right now. Some are beginning again because they want to. Others are beginning again because of changes that are beyond their control. One is a teacher who is going to run for political office. One is a professor on medical leave. One is an empty-nester in search of both a job and a new vocation. One is a lawyer who wants to move into the non profit arena. Then there's me.

I am two years from retirement. I am preparing to begin again. My work as a teacher, parish music director, and program director for the Lupus Foundation of Florida all bring me great joy. Some will stay after retirement, others will go. My vision for my life requires new skills. I have found myself more passionate about learning than I have been at any other time in my life.

When my "whiskers grow in again" maybe they will be hot pink, five mile orange, and neon green! One thing is certain, they won't be pastel!

How Virginia’s Attorney General Would Turn Thousands Of High School Students Into Felony Sex Offenders

How Virginia’s Attorney General Would Turn Thousands Of High School Students Into Felony Sex Offenders

Warriors and Survivors

People call themselves lupus warriors. How can you engage in a battle without weapons, training and skill? You can’t! Fighting a war takes energy, strength and clear thinking. Lupus robs us of these things before fight even begins.
People call themselves lupus survivors. When you survive something, it is in the past. You made it through something horrible. You may have scars, but the event is over. Lupus is never over.
Hating lupus won’t chase it away. You might as well expect the color of your eyes or the shape of your nose to change by hating it.
When lupus takes up residence there is no eviction. Co-existence is the only option. Fighting takes energy. Direct the energy toward working for health instead of fighting against lupus. Co-existence is the key to success.

Begin with the End in Mind

Begin with the end in mind. I have been revisiting a number of books that made a deep impact on my life. Right now I am working through Seven Habits of Highly Effective People by Stephen R. Covey. I was caught off guard by an exercise at the beginning of Habit 2: Begin with the End in Mind. Although I could paraphrase the exercise, I am going to quote the whole thing here. I am making a personal commitment to take my journal (one of those black and white hard cover school notebooks) to a quiet place and work through this. Here goes...

"Please find a place to read these next few pages where you can be alone and uninterrupted. Clear your mind of everything except what you will read and what I will invite you to do. Don't worry about your schedule, your business, your family, or your friends. Just focus with me and really open your mind.

In your mind's eye, see yourself going to the funeral of a loved one. Picture yourself driving to the funeral parlor or chapel, parking the car, and getting out. As you walk inside the building you notice the flowers, the soft organ music. You see the faces of friends and family you pass along the way. You feel the shared sorrow of losing, the joy of having known, that radiates from the hearts of the people there.

As you walk down to the front of the room and look inside the casket, you suddenly come face to face with yourself. This is your funeral, three years from today. All these pepole have come to honor you, to express feelings of love and appreciation for your life.

As you take a seat and wait for the service to begin, you look at the program in your hand. There are four speakers. The first is from your family, immediate and extended-children, brothers, sisters, nephews, nieces, aunts, uncles, cousins and grandparents who have come from all over the country to attend. The second speaker is one of your friends, someone who can give a sense of what you were as a person. The third speaker is from your work or profession. And the fourth is from your church or some community organization where you've been involved in service.

Now think deeply. What would you like each of these speakers to say about you and your life? What kind of husband, wife, father, or mother would you like their words to reflect? What kind of son or daughter or cousin? What kind of friend? What kind of working associate?

What character would you like them to have seen in your? What contributions, what achievements would you want them to remember? Look carefully at the people around you. What difference would you like to have made in their lives?"

Am I looking forward to this exercise? Of course not! Will I do it? Yes!

Awareness

Money. Time. Food. The first two seem to slip away and we don't know where they have gone. The third seems to slip in unnoticed and end up on our tummies, hips and thighs. When I was in a class for new home buyers, we had to keep a journal of every penny we spent. The very act of having to write it down made me think twice about every purchase.

When I am on Weight Watchers, I have a little calculator that tracks the point value of everything I eat. If I have to enter 13 points for a single serving frozen pizza when I only have 29 points for the day, I will seriously think about whether it is worth the points.

Those of you who know me, also know that I work a lot. I also do a lot of my work from home. I recently started tracking how I use my time. I made a little spread sheet in Excel with 15 minute increments. After a week of time tracking, I was amazed at how much I do and also about how I "zone out" for periods of time where I honestly don't remember what I was doing!

Tracking things like spending, eating, and time use makes us aware of what is really going on in our lives. Tracking raises awareness. Awareness is the beginning of change. Once we take a look at what we really are doing, we can decide what we want to change in our lives.