Over the past month, I have shared information about ALS as well as my and Mary’s story. I wish I knew what Mary had thought/felt during her journey with ALS, but she didn’t share that with me, so I have shared my part of the story. What I have shared has been shocking and heart-wrenching to many of you, yet I have not shared everything. I have not shared the month from hell when she decided to get the trach or the weeks after that. I have not shared the futile struggle to find her a place to live outside of the hospital after she was trached. I have not shared the last month of her life. Those stories will be told another time.
My purpose for sharing has not been to shock or cause pain or fear. I have shared in order to raise awareness. ALS is not what Hollywood wants to show you. It is not pretty. It is an ugly, evil disease that steals everything and leaves scars on those left behind, scars that may never completely heal. What I have shared is the reality that I experienced.
If you know someone affected by ALS, whether they are a PALS, CALS, friend or family member, now you have a glimpse of their daily lives. Reach out to support them, bring food, give the CALS a break for an hour so they can take a shower, stop by with a puppy, kitten or bunny. Just reach out. It is almost impossible to ask for help while living through ALS. Volunteer or donate to a reputable organization that supports people living through ALS.
Today it has b
een 19 months since Mary crossed to the Summerlands. I promised her that when she was done fighting, I would fight for everyone else. This months’ posts have been one way I continue to do that.
een 19 months since Mary crossed to the Summerlands. I promised her that when she was done fighting, I would fight for everyone else. This months’ posts have been one way I continue to do that.Mary’s journey with ALS was the worst 22 months of my life. The last month of her life was hell. She lost the battle with ALS. But in the end, ALS will not win. Love will win.
Love always wins.
1 Comment
Margaret Willett · May 31, 2017 at 7:53 pm
You wrote from the heart Denise. What you experienced needs to be shared. Thank you. All of us lived similar hells as our loved ones went through the journey of living with and dying with ALS. Well done, Denise.
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