Contact

ALS Worldwide welcomes any questions or comments you might have.  We provide free, personalized and confidential support services to anyone in the ALS community—whether you are a patient or a loved one, friend, health care professional or caregiver of someone diagnosed.

Get help now! Fill out the Online Profile Form or if you would prefer to talk with someone by email or phone first, please contact us at [email protected] or 1-608-663-0920.

For all other inquiries, please use the email form to the right and we will respond promptly to your request.Thank you.

ALS Worldwide
5808 Dawley Drive
Fitchburg, WI 53711‑7209

ALS Worldwide
May 26, 2017

A Wild, Lonely Belief

Rachel at the "French Quarter" Faulkner Bookstore

*Rachel is a regular contributor to ALS Worldwide. After being diagnosed with ALS in 2015 at age 28, she began sharing stories through her blog, howilivewithals.com. An English teacher and author, Rachel’s words give voice to those living with ALS, and ALS Worldwide is proud to share her work for the benefit of all in the ALS community.

“I am a voracious reader. I always have been, thanks to my parents and grandparents, who planted books around my house in places I could reach even when still crawling. The books I read in childhood showed me how to dream, hope, and believe. Even now, those stories influence the way I understand and cope with the world. When I spot trouble coming my way, I use the front and back covers as a shield while I confer with the characters.

Lately, the shield I crouch behind is the work of Peter Pan Creator J. M. Barrie, and Peter is whispering in my ear: ‘Every time a child says 'I don't believe in fairies,' a fairy somewhere falls down dead…don't let Tinker Bell die!’ I watch the children bring Tinker Bell back by clapping and shouting, ‘I believe!’ But what good can Peter Pan's words do me, a young woman living with ALS? More than you might ever imagine.

You see, I have this conviction I will not succumb to my disease. I believe I will survive this. I can count on one hand the people who share my belief. I often hear other PALS (people with ALS) talk about sadness over the special moments they will miss. Our loved ones will blow out birthday candles, throw graduation caps into the air, walk down the aisle, paint nurseries, and build cribs. We can only hope they think of us now and then as the flowers of their lives continue to unfold long after our own blooms have wilted and shriveled.

I’ve been told not to get my hopes up, and my answer is always the same: ‘What harm can belief do? If I am wrong, I won't be around to cry about it.’ Belief is a source of strength for me. Peter Pan said belief can save a life. Matthew 17:20 reads ‘If you have faith as small as a mustard seed, you can say to this mountain, move from here to there, and it will move. Nothing will be impossible for you.’

Belief is so powerful because of what it inspires. The magic of belief lies in the way it empowers us to live, and when necessary, fight. I believe I will be cured, but that doesn't mean I expect an easy path. I know that only if I work hard and plan carefully will I survive long enough to be cured. I need to keep my lungs strong and clear with daily use of the cough assist and AVAPS machines. Each day, I also complete two dozen physical therapy exercises and follow my feeding tube meal program. I can bear all this and more because I know my story will have a happy ending. This is my wild, lonely belief.”

Read more from Rachel’s blog at howilivewithals.com