People sometimes ask me to talk about how having sarcoidosis has changed my life and I could lament over the ways it has been disruptive, because believe me, it has been to me and to my family but I don’t necessarily want to focus on that, except to say that life with a chronic condition does put you in a state of constant grief. There are a lot of losses. In my case, the loss of my career was voluntary. I opted to leave a career that I loved for better health and to save my life. I was not asked to leave. I’ve also lost the usual things one loses when their body won’t behave. I get fatigued and I’m in pain nearly all the time. I frequently worry that I’ve let my husband down because I put our “in sickness” vow to the test way earlier than anyone would prefer.
Yet, despite all of this pain, this sorrow that does loom, I also feel a greater sense of the value of time and the importance of trying to live a good life. I am a nicer person now. I wasn’t mean before but I fully admit, I was a bit arrogant. I am careful not to judge what I don’t understand now. Where I used to fight every battle presented me, I now know when to walk away and I realize that other people’s unhappiness is not my problem nor is their negative energy. I can live and let live now so much better than I could before I got sick. Kindness and being nice even when I don’t need to be have actually become very important to me.
Things are definitely different now. My worries are more profound. My fears carry more weight. There is a depth in my awareness regarding the uncertainties in life but these are also the very things that make me appreciate my life more now than I ever have. I have a keen sense of gratitude about my life that is earnest and enthusiastic. I actually laugh more now and even though I live with a deadly serious health issue, I take life a lot less seriously and when I do take time for fun, it’s magnificent and now memorable in new and special ways.
Small simple pleasures of daily life, once missed in the chaos of the busy mindless drone of chores, work and obligation, have taken on new meaning and now, thanks to sarcoidosis, I understand that they are actually the bests gifts of all. So, yes things have changed since this disease entered our lives and yes I am scared but I have also been blessed with new and significant insight that life is what we make it. It’s not what happens to me that matters but how I choose to handle it.
So, when people ask me to talk about how sarcoidosis has changed my life, they are sometimes surprised to learn that I am happier than I have ever been and that I am truly grateful for the experience of having this disease because without it, I would never have been challenged to live as well as I try to live now. I would not truly understand the meaning of grace.