Letting Go

US

It’s evening and I just woke up from a three hour nap. Actually I just scared the shit out of Mark because I was choking. I quickly gained my physical composer but not my mental. As I sat on the couch crying next to Mark I felt so much grief. Even though Mark tried to console me I was struggling and I didn’t want to ruin his night so I decided to write.

Writing has helped me handle this mind-blowing disease but it is getting tougher for both Mark and I. It’s getting harder because my legs are getting weaker and my speech is barely understandable. I’m choking more frequently which can be scary to everyone present. It’s getting tougher because sometimes we test each other’s patience.

Right now one of my biggest obstacles is declining some social events. I know this may sound trivial and I should be more concerned with more important things like walking, talking and choking but it’s not trivial to me. My mind is still wanting to do everything but my body and Mark just want me to be reasonable and safe. I hate to give in to this shitty disease and let it alter our social life but I guess it’s time. I guess it’s time to compromise.

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11 thoughts on “Letting Go

  1. Thank you for sharing your boldest and most painful thoughts. You have expressed yourself so honestly during this painful, frustrating journey. You have given your daily blog, and your love, to all of us. What can we give back to you?? Our prayers, and our thoughts, seem so miniscule in comparison to what your family is enduring…..please know that we love you all so dearly! Hugs are being sent to you!

  2. My prayers are with you, Rosemary. I remember all those very busy younger days and all the amazing gifts you shared with me, my family and with MCC. God Bless, Kathy Graff

  3. Oh …precious Rosemary, our hearts ache for you and your family. You have fought this disease with pride and determination. I am sure that everyone would agree with me that you are the Hero here, not the disease. You have reached higher, stretched further and accomplished more on this journey than anyone I could possibly imagine. Furthermore you can feel proud that your family has taken the same stance to stand up to this dreaded disease. As time goes forth it will be the disease that will parish, but You my dear friend, will Live forever. Your legacy will live on and on, for you have taught us all “to live simply and love like crazy”! Not a day goes by that I don’t recite that and try to make the most of each day. That is because of your example. We want you to stay here as much you want to stay. You will live in our hearts forever. We pray that the love that surrounds you and your family will provide comfort and peace as you face these new challenges. Remember…. You are our Hero! Love and Hugs.

  4. Thank you for sharing your truths with us, my friend. You and Mark are both so beautiful, inside and out. (And I love the photo, too.) XXO

  5. My thoughts are with you everyday as I pray for you, Mark and your awesome family. You’re such a strong and beautiful woman who is truly remarkable in your candor about this “shitty disease”. I cried after I read your blog today……. Hugs girlie and please know how much you’re loved by so many people :-)

  6. Your post touched home for me today. I remember like it was yesterday a time when I was scared by my mom choking. I remember running to get her suction machine to help her. I too remember sitting next to my mom and crying with her over this terrible disease. ALS sucks!! Reading your words in this blog brings me back to conversations I had with my my during her battle with ALS. Some conversations were with words and others were through text and her speech machine when talking became too difficult. Your blog has been a form of therapy for me. Thank you for writing as you go though all of this. A friend of mine connected me to your blog. You and your family are in my prayers. I know all to well what this disease can do.

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