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I’m finding that Facebook is full of a lot of pithy little advice, condensed counseling and succinct direction about how to live your life. I came across this little tidbit during my morning scroll through the endless noise of social media and it immediately made me think about my life with sarcoidosis and my daily decision to live and fight or give in and give up.

You see, sarcoidosis had taken much from me. It has taken my career, my energy and my strength. It has invaded my body with constant pain. It has dulled my once sharp mind and melted my quick wit. Sarcoidosis has turned my life into a daily battle of wills…my will versus its desire to destroy me. There are things this disease has taken from me that I will never get back. I know this and accept it but there are things this disease has also given me that I would not otherwise know or understand and, while I would not call this a “win win” proposition, as I’d much rather be a little ignorant and have a healthy body, I will say that I have learned to make the most of not only what I have left but what I have learned.

I haven’t lost the core of who I am. I may not be able to run as fast or remember every word I want to say but I am still me. I am still the person I’ve always been, at the heart of who I am…perhaps even a little better because of sarcoidosis. I know that I make some decisions differently now, not just about how to use my energy because it is limited but, also about how I want to be treated and how I treat others. I find that as I have to be a lot more patient with myself, I am with other as well. I am less judgmental than I used to be…less of a know it all and this actually makes me a happier person.

My mother used to say, “Would you rather be right or would you rather be happy because most of the time you cannot be both.” Before sarcoidosis, I thought I understood what this meant. Now I know that I actually had no idea. What I know now is that other people’s negativity, need to control and ignorance aren’t my problems. I don’t have to be the fixer or prove that I am the smartest person in the room because I have finally learned, thanks in part to being chronically ill, that the smartest person in the room is usually the quietest.

I find that I am also wiser with my time. We only have so much of it. I don’t want to waste it wallowing about what used to be or what isn’t anymore. Instead, I choose to cherish my husband, my home, my dogs, my world…albeit on a much smaller scale. I’m no longer driven, no longer striving, no longer reaching. Today, I know that truly living requires me to be present in this moment, right now. It’s hard to do that when you are always seeking the next “big” thing because life is not really about the “big” things. Most of the time, life is most enjoyed in the small quiet moments, often missed when “big” things are being coveted and mindless chased after.

Sarcoidosis is going to do what it is going to do to me physically. I can spend my energy and time in worry over that and over what it has already taken or, I can spend what is left of my time and energy making decisions and taking actions that seek to bring my life peaceful relief and joy, that seek to mend past regret, that are healing and hopeful and that bring me comfort. It really isn’t what happens to us that matters but how we decide to respond that makes all the difference. Things may have been taken from me because of my disease, but I still have a lot of life left to live and I intend to live it well no matter what might come my way. This is one thing no disaster or disease can take from me.

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