I know it hurts. You don’t have to hide your tears.
ALS is a cruel and difficult disease. You see the visible toll and I know it makes you sad. Uncomfortable even.
I struggle too with each loss of function, especially with the big things like driving and eating. Let’s face it, it’s embarrassing when I eat like a toddler. I know it’s uncomfortable to watch when my hand is shaking and all the food falls back on the plate before the fork hits my mouth. I’ll get to a point where I’m ok with you feeding me. I know you won’t mind a bit.
I know it’s frustrating when you want to invite me places, but I can’t get into your house easily or I can’t get into the venue at all. So the invites stop coming. It hurts.
Your once vibrant, active, and strong friend is slowly wilting away. I get it. It’s ok to be mad. ALS is hard on everyone who crosses its path. It’s ok to be sad. It’s ok to cry in front of me. I’ll probably join you. It helps me know you care deeply.
I mourn not only the loss of physical function. I mourn the loss of cute shoes, my independence, and dreams of an active retirement. It hurts.
I’m an awkward physical mess and sometimes an emotional mess. Sadness catches in my throat and rolls down my cheeks without warning. Let’s express and validate our sadness when needed. But let’s not stay there.
I’m still me on the inside. I want to hear all about your life and encourage you to be the amazing person I know you to be. I want to laugh with you until it hurts.
So, I wear ugly shoes, depend on others, and change retirement plans. I can live with that.
I love you my friend, and I am loved. That’s really all that matters.
I’m forgiven and Free and it’s ok if you cry with me.
May 1, 2017 at 12:54 am
Love you Shelly . I know your pain and still know how smart and strong you are. I miss texting you and our chatting about our lives. Your Grandkids are blessed to have you in their life. You always were amazing and always will be. Im glad your my friend.
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May 1, 2017 at 11:46 am
Shelly,
Each time I read one of your entries, all I can remember is your smile, our laughs and what seemed like hard work we have done together. In retrospect, that work was nothing compared to the hard work you are facing each day. I so admire your strength and wish you to know that I do think of you often. There are times when I share your story with pride in my heart and my words.
While I can’t imagine or relate to your fears, your hardships etc., I know you will continue to be blessed. You have truly taken an extremely difficult situation and made it the best it can be. I will continue to read your postings and should you have time, send me a personal note on my email.
I love you and you are in my prayers.
Linda
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May 1, 2017 at 1:51 pm
I was so happy to see you on Saturday and meet your hubby. You remind me of what is important in this world and all we really have…LOVE.
Diane
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May 1, 2017 at 7:42 pm
😪🙏🏻❤️
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May 2, 2017 at 2:57 am
Your words are beautiful, Shelly….but your heart is pure love. ❤️
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May 3, 2017 at 7:27 pm
Thinking of your daily struggle and appreciating your words.
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May 4, 2017 at 3:29 am
Dear Shelly, you have no idea how much I appreciate your writings, it helps me understand and communicate with my sister. God bless you for your gift to me and all your friends that read your blogs.
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May 4, 2017 at 3:31 am
I didn’t enter my info on the above reply
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May 10, 2017 at 1:21 pm
Shelly, you are such a blessing to others.
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May 15, 2017 at 4:56 am
Shelly I met you this evening at the jw Marriott, I knew from the moment I heard your voice the evening prior I had to meet you! You have an amazing presence!! This lady it funny people, I can’t wait to talk more tomorrow!!!
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