My story of living with a chronic neuromuscular disease.
Sunday, May 30, 2010
Corragio! What it has done for me and my family.
Okay, first I have to give a shout out to my new friend and (unbeknownst to her) mentor, Lisa Gigliotti. Lisa has lived with two autoimmune diseases, namely Rheumatoid Arthritis and Myasthenia Gravis, and while facing many difficult challenges, pain, loss, and adversity she has never lost sight of what the powerful female mentors in her life instilled in her. Live with courage (Corragio!), never give up (Testadura!), and, there are many things in your life you CAN control.
What a message I needed to hear! While many of you know that the inner Sicilian in me does not allow me to lay over and play dead, I have had many challenges with the disease that has taken over my life since last summer. Like a ship in the night I have been navigating rough waters, not knowing what rough seas lay ahead. Daily pulling from places I did not know existed, the strength to work full time from home, raise my children in a loving and fun household, and make sure the man of my dreams and caregiver (something he did not sign up for 11 years ago) knew I adored him every day.
I feel God's presence and my Nana - Minnie Gegliano Brown - led to me this lighthouse, this beacon of hope - Lisa. I am sure she will be humbled to read this as she is not boastful. She mearly tells her story as it is - true and from the heart. But it would be wrong of me not to acknowledge the powerful change I have already felt sweep through me since finishing 2/3 of her book - Corragio! Lessons for Living From an Italian Grandmother Despite Illness, Pain, and Loss
I was led to this book by my local Myasthenia Foundation of America Chapter's Executive Director - Jamie Sheppard. She said that Lisa would be speaking at our annual MG meeting in June so I looked her up and there was the website www.withcourageican.com I looked at the website and read an excerpt from the book and felt an immediate connection. I too have Italian roots and shared a very close relationship with my Nana (Nonna as Lisa's family addresses her Grandmother), I too have Myasthenia Gravis, and I too am a Catholic Michigander. I wrote to tell her how excited I was to meet her and read the book and she sent a copy to me.
I am currently in the midst of devouring it. There are other similarities we share and the road of life and the cards we have been dealt can keep neither of us down. At a time where I was most concerned that my illness would rule me for the rest of my days, there arrived in my mailbox a beacon of hope. While I know I will fight this battle for the rest of my life - for there is no cure - I will not give up the fight. If it means I continue to endure the IVIG every 2 weeks, so be it. If it means swallowing an obnoxious amount of pills to ensure I can breathe, speak, walk, and talk - so be it. I will continue to fight. My children will have the healthiest mother possible because I will fight.
If you are a reader of my blog plagued by Myasthenia, or any chronic illness, I urge you to read Corragio! It is a story of rising up against all odds. It reminds us that while there are things that are taken from us physically, there remain many things that we control. We control how we react, we control what we do or do not do each day, we control what activity we try (maybe we find out our body will not participate but at least we can smile broadly and say we tried). This book has touched my life and changed my outlook. While I do not know what the future holds, I am ever thankful for the wonderful people I have met on this journey.
Last week, I could not see well enough to drive and had breathing problems so severe I worried I would end up back in the hospital. Today, I drove, I swam with my children, I watered the flowers. To those of you reading my blog not stricken with illness, heed my words - do not take the little things in life for granted, for it is the little things in life that make living so grand. Cherish them, take them in, for they are a gift. We are all on a ship, we can be the Captain of or vessel or a mere passenger, it is our choice. I have one thing to say and it will lead me from this day forward - Corragio!
Jen
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Brava!!!
ReplyDeleteI get to go to the Meeting in June! I am so excited! My hubby is SO busy in the summer that I kind of assumed I wouldn't be able to go unless I find someone to take me. But he realized how important it was to me, so he's going to take me. YAY!
Beautiful post, Jen! Can't wait to read the book!
I am sooo excited!!! Are you going for the whole meeting, I am going to try my darndest:) We should do lunch, you, me, and my grandmother, and anyone you want to bring!
ReplyDeleteJen