Almost six years ago I was diagnosed with pulmonary fibrosis, a lung disease in which an overactive immune system attacks the interstitial lung tissue, leaving fibrotic scars. There is no known cause for most forms of this disease; the treatment is rarely effective; and the life expectancy is somewhere around three to five years. Unlike patients who undergo other organ transplants, patients who elect lung transplants only have an average life expectancy of three to five years after transplantation.
My initial reaction to my diagnosis was to basically ignore it. I do not have any fear of death. I had a great career as a corporate employee relations manager for a company in the top 100 of the Fortune 500 list. My income was high; my two sons are grown and well-employed.
My plan was to work until I dropped - literally. I joked about how they'd probably find me slumped over my computer one morning. Of course, at the time, it didn't occur to me that as my disease progressed, my ability to work would be affected. And shortly after the diagnosis of pulmonary fibrosis, my joints began to ache. Referred to a rheumatologist, I was informed I also had developed another auto-immune disease, psoriatic arthritis.
Between taking medication to try and slow down the progression of the lung disease, and medication to stem the progression and pain of the arthritis, I was downing handfuls of pills a day. But nothing was getting better, or even staying the same. Every month my energy waned a little more as my lung capacity dropped and my joints swelled.
When reality finally sunk in, my pulmonologist signed the paperwork, putting me on permanent disability. There was no question about getting disability benefits. My illness was so critical, neither the Social Security Administration nor my long-term disability carrier questioned the fact that I am in fact disabled. Everyone else seemed to know I was disabled before I did.
What Do You Do With The Rest Of Your Life
"What would you do if you knew you could not fail?" Those words jumped out at me from an engraved paperweight in a Christmas catalog.
Think about all the things you'd love to do but don't because you think you'd be a disaster at it. What did you want to be when you were a child - other than a fireman or a movie star. When you daydream, what are you doing in that altered state.
When I saw that paperweight the first thing that came to my mind was drawing and painting. For some reason, the idea of drawing portraits became an obsession. I kept thinking about it day after day. The holidays were coming up and I asked a friend for some sketch pads, drawing pencils, and an instruction book - something like "Drawing for the Totally Incompetent Artist" if there is such a title.
I started drawing that Christmas Day. In retrospect, my first attempts were pretty pathetic but they looked like people and that was a great rush for me. Three months later, I conceded that I could no longer do the job I was hired to do and decided to take disability voluntarily before the powers that be informed me I needed to find the front door. I was still drawing, almost every day.
Find People Who Share Your Interests
If you're seriously ill, the last thing you need is to sit alone, thinking about the fact that you're going to die. First of all, everyone is going to die. Second, you're still alive so do something about it. Nurture friendships with people who share your interests. A support group of people with the same or similar illnesses is okay but don't limit yourself to being with other sick people. If you have a passion for drawing as I did, find other people who want to draw.
When I stopped working I mentioned at my church group that I'd started drawing. Several women who were homemakers and had lots of free time during the workweek, told me they painted once a week. They invited me to join them. And we didn't just draw and paint; we talked, we lunched, we laughed and had a great time. And four years after leaving the workplace, I'm still drawing, painting (I've fallen in love with pastels), lunching and even laughing.
Keep Looking For New and Exciting Adventures Your Illness Can Tolerate
If you've always been active, one hobby or interest may not be enough to keep you turned on to life. Keep your mind open to new ideas, new people and new adventures.
When I started drawing and painting, life seemed to perk up, as did my spirits. But again, my type A personality needed more. Recently, during a painting group session, one of my friends mentioned that an artist friend had put up a website. The site had clothes, accessories and gifts that you could have printed with your own art or photography and sell online.
The minute I got home, I looked up CafePress.com. Photography has been a serious part of my adult life and I've sold my work in California, Oregon and Washington. I could immediately visualize how my work would look on the clothes and gifts from CafePress. Within a week, I had opened up an online store.
Suddenly, the pain which now requires multiple doses of powerful narcotics each day is at least bearable. I'm too busy updating my inventory, taking new photos, and networking online to focus on my stiffening lungs or my achy joints. Yes, the pain is still there and yes, I still need pain medication; but now I have something productive to distract me and keep me engaged in the business of living.
Let Others Have Low Expectations; Keep Yours High
One thing I learned pretty quickly is that when you're critically ill, people have low expectations for what you can do. They really don't expect you to do much more than sit like a lump, staring out the window.
Well, that's fine. Let them have their expectations. How much fun to blow them out of the water by turning your life into a final spurt of creative energy. And when you're gone, they'll just see your smoke and say, "Wow, she went out with a blast!"
