Today has been a great day…I’m in a cleaning mood, the weather is great outside, and believe it or not, all is right with my world.
“So what?” you may think. Well, I’ve learned over the years to be grateful for the days when I have sufficient energy to do housework. You see, I have an autoimmune disorder, and I never know quite when something will wreak havoc with my body and I can’t function for a day.
One way I deal with this is by thinking, “Things could always be worse.” I know many who are struggling with cancer and other horrible diseases.
I faced my own mortality at the relatively young age of 30. It was a fluke. My liver enzymes were high in some blood I donated to the Red Cross. I got a letter from the RC informing me of that fact and urging me to see my doctor. I followed their suggestion.
My doctor scheduled me for a liver biopsy, which in 1989 was not the most fun outpatient procedure. John took me to the hospital and stayed with me. I got a shot of local anesthetic, and then a nurse came in with a big horse needle (I nearly came out of the bed when I saw it, because I really don’t like needles) and punched it in the space between my ribs.
It felt like what I imagine a horse kicking you in the ribs might feel like (minus the broken ribs). Crap!
After a couple of hours, my doctor came into my room with another doctor and I thought, “Uh-oh. This can’t be good.” My doctor informed me that I had primary biliary cirrhosis. When I heard the word “cirrhosis,” I thought back to my college days and figured that my drinking had come back to bite me. I really didn’t drink THAT much…although sometimes I overdid it.
John and I were at a loss about what to ask the doctor. I said, “So…what is that?” and the other doc, a gastroenterologist explained that it is a liver disease in which the bile ducts eventually become filled with scar tissue. I blinked back tears and looked at my doctor.
Next question: “What is the life expectancy?” My doctor said, “Well, it’s usually found in middle-aged women” [“Middle-aged?” I thought. “But I’m only 30!”] …” You will probably have a normal life expectancy.”
I was still reeling from the news and trying to figure out what this meant for my life. Our son, Daniel, was 18 months old at the time, and we wanted to have another child. I asked the doctor, “Will I be able to have any more children?” He said, “I’ll need to consult with someone about that…and he contacted (later) a liver specialist at Johns Hopkins.
In the meantime, our pastor at the time (Joel Snider) came by to visit. John and I told him about my diagnosis. I remember his saying something like, “This is one of those bumps on the road of life.” At first I thought, “Yeah, buddy, that’s easy for you to say.” Later those words comforted me.
You see, Joel introduced me to a young woman in our congregation who was on the waiting list for a heart & lung transplant. We met at a church picnic. She and I talked about our respective diseases, and after I talked to her, I felt much better. I was shocked to hear, a few weeks later, that she had died waiting for her transplant.
Nothing I have read on the Internet about this disease has been encouraging. Everything sounds dire. I was a member of a Facebook group for people with PBC for a while, and the posts were so depressing, and the people sounded so much worse off than I.
After panicking for a few weeks and thinking, “I’m gonna die!” and worrying about the future of our family, I finally calmed down. Maybe it was the news report of a young pregnant woman being hit by a bus on Church Street (and killed) that got through to me. Or maybe it was the realization, after talking to my doctor in a subsequent visit, that I could take life one day at a time and there were some medications available to help my condition…and best of all, I could have another baby. (I asked him a lot about that. I didn’t want to bring another child into the world if I wasn’t going to be around to help raise “it.”)
I also need to give credit where credit is largely due: God calmed my fears. I gained much hope and comfort from reading the Psalms. When I prayed, I felt like God listened and even had the sense, “It’s all going to be okay.”
Regardless of how things turned out, at that moment I decided I was going to look at life differently. I have read accounts of many people with life-threatening diseases who say they are actually grateful for their disease, that it changed their lives completely.
I know that my autoimmune disorder has taught me to slow down and smell the roses, so to speak. It made me appreciate…so much…my children’s laughter and activity and yes, even the challenges we went through when they were teens. It’s made me feel incredibly lucky to be married to a sensitive man who loves me for who I am and who has stood by me all these years (nearly 30).
So if you wonder why I believe in God, why I think faith is important, why I try to live each day as if it’s my last, now you know the “rest of the story.”
Now to get the bathrooms cleaned and the floors vacuumed….I need to take advantage of the energy I have today! Life is good.