My Grandpa Stan, who spent the last 20 years of his life convinced he was dying, always said, “If you don’t have your health, you don’t have anything.”
However, my Grandpa Stan was wrong. Take it from me, someone who has lost nearly everything in terms of health. I am unable to move except for my face and my feet, and my feet only about an inch (I cherish that inch). I use an eye gaze computer to communicate because I can no longer speak. I survive now on a ventilator and feeding tube. All that remains are my mind and senses. Well, scratch that. My sense of smell is totally lost because air doesn’t move through my nose anymore, just the hole in my throat. My sense of taste exists, but the only thing that goes in my mouth is toothpaste, so taste is nearly irrelevant.
Despite all this, I know my grandpa was wrong. It would be easy for me to become bitter if I focused on what the monster called ALS has stolen from me, but I have something more important than health. I have love.
I realize “love conquers all” sounds trite, but it’s something I really do believe. Without love, my life would be unbearable. I am loved deeply by family and friends. My parents tell me how many people at their church – total strangers to me, but readers of my blog – ask about me and my husband Evan. The love that affects me most, though, comes from Evan.
“That’s 20,” he says after a flurry of kisses on the tip of my nose.
His affection gets me through the day. From scalp massages to shoulder rubs, he spoils me rotten. Sometimes he even hugs me, no small task considering I’m completely limp and unable to hug him back. Oh, what I would give to hug him!
So in this new year, hold your dear ones near, and may you be blessed with health, safety, and most of all, love
* I can’t post comments or reply to them, but I can read them and I love them. Keep writing!If you have fond memories of Rachel as a teacher in her life before ALS, or if a post on this blog has ever moved you, please consider making a tax-deductible contribution to Rachel’s care through the Rachel Doboga Campaign at https://helphopelive.org/campaign/16990/NOTE: If donating through PayPal is more convenient for you, you can still contribute that way. Just be aware your gift won’t be tax-deductible. From your PayPal account you can donate to FriendsofRachelDoboga@gmail.com
How I Live Now: Life With ALS 
Rachel- This post brought me to tears. Your perspective on everything, I appreciate the raw honesty and you even sharing to begin with. I don’t always have the words to convey how much you move me in these blog posts. If ever i win the lottery or come up on an abundance of enough money/income to care for my own family and make a difference in yours- i swear id find you and do absolutely anything i could to help fulfill whatever your heart desires for you and your awesome family. I’m so sorry that youre going through all of this. You have been soo strong. My heart is overflowing with love reading about the love you have in your life and the love that flows from your grateful heart. It is rare these days. Thank you for reminding us what truly matters and sharing your journey. I enjoy when you write so much. Wishing you peace, love and happiness always. Hands down one of the strongest and bravest women/survivors ive read about. Love from Michigan!💖
LikeLike
Love you beautiful lady! I look at our photo everyday, as it’s one of my screensavers on my computer. I know you can’t answer these. But, I will catch you up on things in my world. Last March I was offered a Development Manager position at ALS TDI! Talk about a dream job! I get to talk to pals and cals all over the country! Raise funds for ALS research! And spread even more awareness! Sadly, I lost my Tiki girl in Sept at the ripe age of 19!! But then 4 days later, my sweet Dublin was diagnosed with Lymphoma. But, he has been doing really well on his chemo, and is currently in full remission. I am just devastated as he is my everything. But, we are living every day in love and joy! Sound familiar?? I love ya! Thank you Evan for being her entire world! You both deserve better from life! I will keep fighting this disease in your name! Love you! And here’s to a new year of hope!
LikeLike
Oh, and happy New Year to you and yours!!
LikeLike