My life isn’t what I expected. Who would have thought my arms and legs would be merely ornamental? I’m not going to lie, being a quadriplegic isn’t easy. Wow. I need a minute to let that sink in, my arms and legs are no longer functional. It’s not the end of the world. I can still live my best life, regardless.
You can read here how I mourned the loss of being the cookie making grandma I thought I’d be — but I’m done mourning. With the support of my family and friends, I’ve adapted to a new normal. Check out the picture, I’m playing with my 3½ month old grandson. I’m not able to hold him so Grandpa put baby’s bouncer over my legs. Voila! Twenty minutes of nursery rhythms and giggles. Pure joy.
What does living my best life look like?
- I write a work of fiction celebrating the power of sisterhood.
- I participate and advocate whenever I can to find an effective treatment or cure.
- I celebrate that I’m at year six with a two to five year prognosis.
- I surrender to the fact that I need help with everything except breathing and talking. ALS hasn’t taken those yet. But if it does, I’ll adapt to that too.
- I process frustration and grief when they come, then I punch them in the face.
- I surround myself with positive people, my tribe.
- I practice mindful meditation to stay present and grateful in this beautiful gift of life.
- I remember God has a divine purpose for my life — that is to encourage and pour love and acceptance into every person I meet. I’m not there yet, I’m a work in progress.
Are you going through the motions of this life, waiting for your best life to begin when _______? Fill in the blank. Stop waiting. Start now. What does living your best life look like? Don’t compare yourself to others. Don’t listen to what society says. Live YOUR best life. Drop the excuses. Find your tribe who will support you and get busy living your best life, regardless of circumstance.
What does living your best life look like? Comment so I can learn from you.
I’m forgiven and free and living my best life, regardless.
October 25, 2018 at 1:20 pm
Another beautiful article written Doc! JOY. A gift from our Creator. It’s always available and it comes in small and big packages. It shows up on our doorstep in the shape of a girlfriend or our grand kids! As I reflect on one of our Small Group Studies at BOL, I am reminded to live life at its fullest measure! And so I will. With joyful abandon in fullness of my freedom in Jesus Christ. I praise God for you. I thank Him that the progression of ALS in your life is slow. I continue to ask Him for the cure. With all my love ❤️!
October 25, 2018 at 2:26 pm
Thank you Shelly for being such an inspiration just by being you! Living your Best Life both humbles and inspires me to live each day with Joyful response to God’s leading and to knock out any and all negative thoughts that may come my way. I’m Going to live my. Best life today with JOY. Thank you for sharing.
October 25, 2018 at 2:33 pm
My best life is to be surrounded by love ❤️ I’m greatful for having such a loving family and friends
October 25, 2018 at 3:43 pm
Living the best life possible for me means learning to Love others and stop being so self focused. Not letting the small stuff rule my world, extending Grace and sharing the hope I’ve found in Christ my savior.
Stay strong…. You are an inspiration to me. I’ve only lost my speech and eating. I can not imagine being unable to move.
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October 25, 2018 at 3:44 pm
The above comment was from me Shelley
October 25, 2018 at 4:09 pm
Doing the best I can with the life that has been laid out and planned for me. Remaining positive each day is another step
October 25, 2018 at 8:39 pm
I don’t know what my best life is..but you can bet I will be thinking about it…hmmm…I do love my life..but my BEST life??
I love my farm, and Sharing it with others. I love my quiet moments in the morning with God, my animals, my husband. I love my children and my grandchildren. I love chatting with people, exchanging ideas, reading, writing poetry, doing calligraphy, painting, sewing, crochetting, traveling, cooking and eating healthy food, creating healthy recipes with what I’ve grown and sharing it with people…so many things! My life is FULL of things I love..is that living my best life? Then I guess I am! Thank you Shelly…
October 26, 2018 at 12:37 am
I am so happy to see this post. You are an inspiration to me and I am happy to share my thoughts about living my life. Every day I feel so grateful for everything, the little miracles of life like the air I breath, my health, and all the little joys of each day like the sun shining or the beautiful sky that provides rain clouds. I am so grateful for a loving family and a husband who cares deeply for me. Life is not always what we thought it would be, however choosing to go through the tough stuff and making it through has lessons that I am thankful for.
May GOD keep blessing you with the air to breathe, the positive attitude you seem to always keep regardless of your challenges, and the will to feel grateful for what you still have. May GOD Bless your husband , your family and the friends that help you on a daily basis. Love to all, Patti
October 26, 2018 at 2:17 am
The fact that I have a beautiful friend like you in my life fills me with joy. I just had this conversation today with a friend… We were discussing the fact that our kids are unable to join us for Thanksgiving this year. My comment was, ” It’s just a day, I am grateful for every day, not only on Thanksgiving” Every moment , whether it be filled with joy, or sadness, shared, or alone is a day to count our blessings and have a heart of gratitude.
I love you my dear friend❣
October 26, 2018 at 5:25 am
You are and will always be my favorite rock.
through our lives may be long or short, fulfilled or strained, meaningful or neglected, we all have rocks in our lives. Anchors that hold us when we need to stop, hold fast, steady ourselves from the raging ocean. A Mother when we are little, a best friend when the teens are upon our hormones, a hero, a partner or someone that shows us everyday we all can be better. We must be better.
Let’s have many rocks, let’s be a rock to many…
You are my favorite rock Shelly, I love you for that
December 19, 2018 at 4:58 pm
You are an amazing person.
I feel blessed to have stumbled upon this site.
A divinely led stumbling indeed.
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January 18, 2019 at 7:40 pm
Shelly, I came looking for you because I thought “I haven’t seen a blog post from Shelly in awhile.” I’m glad I came searching because, somehow, I missed this essay from you, 2 1/2 months ago. I remember reading your essay about not being able to be the grandma you wanted/envisioned. It gave me a new perspective. I don’t have kids or grandkids so I’ve always read about yours with a “How wonderful she has these gifts” attitude. It didn’t occur to me that ALS has taken away your ability to celebrate them the way you wanted. This post brings that home again. And again you show me how to live in reality, to celebrate what one does have, to examine what a well lived life is, regardless of circumstances, or, when need be, built around, over, through them. Thank you for your generosity in sharing your challenges, struggles, processes, joys, celebrations and goals. I particularly like your approach of punching grief and frustration in the face.
Chicago’s gray, cold winter has settled in and seems like it is planning on sticking around for awhile. My best life right now, is taking care of my mental, physical, spiritual health, being grateful for said health as a way of lifting myself up so I can lift up others.
Peace my friend,
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