The following is an excerpt from “Despite Lupus: How to Live Well with a Chronic Illness” by Sara Gorman, Chapter 1, titled, “Choose Well.” Though the article below and book are written with lupus in mind, those with any illness will find hope and encouragement!
Setting out to drastically improve your life with lupus may make you a little nervous. In fact you’re probably a little scared. What if it’s really too hard? What if this path is even harder than the one you’re already on?
Think of the numerous other times when you’ve felt unsure (or down right scared) regarding a disease-related experience. Maybe you were able to joke about it and laugh it off, regaining your footing and reassuring yourself that things would be fine. But no doubt there were also times when you had to admit that humor wasn’t enough to get you through.
I remember the morning my hand swelled up to three times its size, turned bright red and began violently throbbing with pain, all within a thirty-minute time span. Johnny and I joked that we hoped it wouldn’t burst before we got to the hospital, but by the time we pulled into the emergency room, we had both fallen silent.
My hand had grown so large that neither of us knew for sure an explosion was out of the realm of possibility. Another example was the second time I had fluid surgically removed from my lungs. I jokingly asked the doctor if he thought I could “top” my previous tapping, not thinking that was really possible. I’d been feeling better since the last procedure, and I was confident that I had been on the road to recovery.
But as the fluid was being extracted, we saw that there was actually twice as much as there was the last time. I was bewildered and stunned, practically drowning in the agony of my defeat. Still worse was one random evening after work, when the pain in my joints was so bad it was causing me to throw up. I couldn’t even stand.
Per a phone call to my doctor, I tried extra pain pills, but they didn’t have any effect. As I rocked back in forth in the bathtub, naked, feverish and chilled, my husband and sister pouring cups of hot water over my back and shoulders, I remember concluding that I wasn’t strong enough to make it through my trials with lupus. I had been mistakenly assigned to the post, and I was going to have to take leave now. God must have simply made a mistake.
God Didn’t Make a Mistake
Fortunately, for me, God didn’t make a mistake. I withstood those instances along with many others, each time emerging as a stronger yet more humble individual. Gone was my arrogance, my insensitivity, or my failure to appreciate the blessings I did have.
The hope and belief that I was strong enough to accept this burden increased with each trauma I survived. Believe me, it wasn’t fun, just as I’m sure your battles with lupus have been less than amusing. That’s why the quest to begin living well is such a sweet, irresistible offer.
Are There “Benefits”? We Can Look for Them!
Think, too, of all of the tangible “bonuses” that you might start experiencing: the excuse not to weed the garden, the ability to take a nap now and again and not be teased for it. When you’re 80 years old, what will you be able to say about your life?
The fact that you’ll be around when you’re 80 years old is a feat in and of itself. But how are you going to be able to talk about your life? Will you shine with pride, humility, and thankfulness, proclaiming that you actually chose years ago to conquer lupus once and for all? Will you be able to say that instead of being held back by lupus your entire life, you seized the opportunity and made it more fulfilling?
This isn’t a new concept, of course. Many life altering and/or traumatic experiences in life lead us to this point. Whatever gets you here (divorce, family death, or in our case, illness), it’s our keen ability to see past the pain, through the hardship, and into the light beyond that makes us the successful, accomplished people we are today. It’s the stuff we do today that makes us who we are tomorrow.
Years before I was diagnosed with lupus, a college friend of mine and I fervently talked of our desire to peek into the future. We were fascinated with the notion of seeing ourselves at the random, mature age of 65 years old.
I think about what a catastrophe it would have been if, at the age of 25, I’d caught a glimpse of myself a mere five years later, crippled, practically bald, and forced out of work. I would have been incredulous of the vision, not to mention distraught and panic-stricken. Even still, had I glanced at myself just one year beyond that, I would have seen a model of good health, one with short, thick hair, enjoying the freedom that comes with retirement. I would have watched a woman travel the world with her loving husband of six years, with no children in tow, but perfectly happy in doing so.
At that scene, I think I might have been even more perplexed. You may not be able to see beyond today, but I contend that you don’t need to. All you need to do is to make the choice today.
What Will You Make of This Life?
That choice, given a chronic, debilitating, life-threatening disease like lupus, becomes not when or if, but how. How are you going to perceive this change in lifestyle? How are you going to deal with the accommodations you’re suddenly making? How are you going to view your new situation? Will you look at your new life as unfair and inconvenient, or as a second chance to get your priorities straight?
Can you find satisfaction in knowing that although you have to take a nap in order to function for a full 12 hours every day, most people would pay to have a medical, bona fide excuse to rest each and every afternoon? Will you see that, although you’re not working a full-time job anymore because it was too taxing and stressful, you’re able to dress yourself, stand for more than three minutes, and carry your own groceries, and maybe even your own children?
Do you understand that by admitting that you were helpless in the face of lupus, you have actually put yourself back in a position of control? When you identify that a disease has, in fact, taken control of your life, you have a choice to make. You can let that disease continue to rule your everyday life, or you can take steps, not to control it, but to control the role it plays. You alone hold the key to managing a life diagnosed with a chronic illness. Why not start by unlocking that first door?
Sara Gorman was diagnosed in January of 2001 with systemic lupus at the age of 26. Determined not to let a chronic illness dictate her plans for the future, she refused to admit that her busy lifestyle and indomitable attitude were hindering her chances for a long, productive life. After four years of running her body into the ground, she decided to make it her top priority to start living well, despite lupus. The steps she took to regain the health and wellness she’d lost are outlined in her book, Despite Lupus: How to Live Well with a Chronic Illness. Letting go of her career, postponing plans for pregnancy, and cutting off her hair (or what she had left) are just a few of the monumental, courageous steps she took to reach her goal of living well, despite lupus. A native of Indiana and graduate of the University of Notre Dame, Sara resides in Alexandria, Virginia with her husband, 1 year old daughter, and pug dog.>