So, I have to admit that this project is my first venture into the blogosphere. I don't even read (or is the word "follow"?)that many blogs. Niamh's desire to raise awareness of those living with chronic illnesses and for sarcoidosis in particular though has inspired me to step outside of my safe zone and share my story.
I find myself presented with a great dilemma in the midst of this. Over the years of living with a chronic or ongoing disease I have worked hard on developing an attitude of positivity and trying to see the best in everything, and although not always successful at it, it has helped me tremendously! After all, one figures out pretty quickly that most people don't really want to hear about your aches and pains, it makes them uncomfortable, they don't know what to say, they don't understand sarcoidosis, it's pretty much a conversation stopper actually! And I understand that, I really, really do. More importantly though I also have come to realize that everyone carries their share of sadness, pain, loss, call it whatever you will. A lovely friend of mine has a quote from Plato posted on her refrigerator for her family to see "Be kind, for everyone you meet is fighting a hard battle". The older I get the more I realize and appreciate just how true this is...and I hear that call for compassion, that call to go deeper in relationship, the call to listen not just with my ears but with my heart, to try to walk in another's shoes, to not judge....
My fear in blogging about my experiences with illness is that I will present myself as if my life is terrible, because truthfully, my life isn't terrible, it's quite wonderful actually! There have been hard times, of course, but my life is rich and full and with the shadows have come lots of light. So that is my dilemma. I want to represent sarcoidosis and chronic illnesses but I am very unused to sharing the details so publicly. So bear with me as I figure this out and in the meantime "Be kind, as everyone you meet is fighting a hard battle".
"Well, you will never run a marathon." Etty suffers from ongoing Sarcoidosis which is a chronic inflammatory disease that primarily involves the lungs. Niamh, her sister, likes to run and is going to run the Cork City Marathon on June 6th to raise funds for those suffering from chronic lung diseases. This blog will be a parallel account of their trials and tribulations in the coming months: the would-be marathoner; the mother-of-three moving home and struggling with serious, ongoing Sarcoidosis.
hi - I'm a friend of Niamh's. And the blog has started really well, I think. I don't think you should worry about the moaning and groaning thing - the whole point of what you are doing is talking about LIVING with a chronic illness.
ReplyDeleteBy the way, you write beautifully.
etty- i didn't know that you were living with chronic illness... and as your friend, your sister-in-Christ, one grateful for the wisdom you shared with me when I was a younger adult (younger than now, younger than you at the time, though perhaps not by much!) i am grateful to know of your journey in its fullest. one of the things i learned in l'arche was that ALL of us have struggles, though some of us have the privilege (?) of being able to hide those struggles from most of the world, most of the time. Core members, lacking that privilege, invite us to greater honesty and vulnerability ourselves. Thank you for trusting us with your story. I'll be honored to follow.
ReplyDelete(btw... i blogged through our infertility struggles and found great strength in the process.)
much love to you, friend.
Sarah, I too am so aware and grateful for my formative years in l'Arche. Sixteen years later I believe I am still reaping the benefits of that time in my life and striving to live by those values and attitudes. What a wonderful gift!
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