I live in an area with a rich history. I am up the road from one of the Seven Wonders of the World. Yet I’ve never been. I live a two-hour plane ride from Mexico City, but I haven’t made the trip. Chichen Itza is an ancient ruined Mayan city, occupying a vast space. A visit entails a lot of walking in the open sun. I need to sit often, and sometimes become winded just moving from my sofa to my kitchen sink. And that’s without mentioning the challenges of sun exposure, even with an umbrella.
Mexico City, at 7,350 feet, sits higher than Denver, I have lung issues, so breathing could be a serious issue. And that’s not forgetting the cooler temperatures — my Raynaud’s would never forgive me.
I think of the things that I’d planned to do when I was finished raising my children. Travel was part of that; living abroad, too. I wanted to give Ireland a shot. I still want to visit Germany, and I’d like to see some of the places in my backyard. I do my best to accommodate my illness, but it seems to do nothing to reciprocate. This leaves me with many emotions — sometimes even a good therapy session fails to alleviate the knots in my mind.
Sometimes I get angry because I believe that I am entitled to good health and happiness without question. Then I think of all the wonderful people I know who share this battle. They were getting on with their lives, working, raising kids, traveling, doing charity work — many of them were making a difference — then their lives were set on “pause.” When we hit the “play button” again, nothing was the same. We looked in the mirror, and some of us even looked different — in my case, I lost over 60 pounds in less than three months.
I have previously written about seeking reasons for this disease, but no one can provide answers to my questions. However, I have reflected on the life I led and the provisions I made for myself. Right around the time my last child graduated from college and was due to leave the nest, I got sick. I didn’t even get a month to do any of the things I’d planned while I raised my family, built businesses, eliminated debts, and saved large portions of my earnings. All my savings have gone to lupus.
How dare this illness steal many of my hopes and dreams? I tell myself that despite lupus, I’ve got to pursue some of my goals, though I’ll have to change the way I’d intended to achieve them. I consider lupus with almost every move I make. I resent my inability to travel and engage in various activities. I was looking forward to my kids leaving home because I would no longer have to factor in others’ needs and wants. I travel solo for those reasons. But now I am almost afraid to go anywhere unfamiliar in case something happens. What kind of a life is that?
I ask myself why, and ponder the reasons more than I should. Then I think, who am I to believe that I’m more deserving than others, that I shouldn’t be facing this challenge? Who do I think I am? After years in denial, I am working on acceptance and, let me be frank, I suck at it. I feel defeated, angry, and sad. I acknowledge that I may never get to accomplish the things I’d wanted. But I am grateful for the experiences I’ve had.
I guess I am someone who is doing her best to turn her adversity into something positive. I’ll share a Joel Osteen quote that I like: “You’re going to go through tough times — that’s life. But I say, ‘Nothing happens to you, it happens for you.’ See the positive in negative events.” I’m working on that.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.