Embracing My Mother’s ALS

Embracing My Mothers ALS

I put it off as long as I could. I buried myself in friends’ lives, picked at frivolous problems and attended an excessive amount of events. I traveled for three weeks straight. I caught up on every T.V. show I’ve ever enjoyed. I cleaned and organized my entire home. And I sorted through every piece of clothing my children own, which took a full three days in and of itself.

I can’t altogether explain why I kept putting it off, but I can put my finger on a few reasons that contributed. And for those of you dealing with something heavy in your life, I’m sure you can relate.

  1. There’s a piece in every one of us that holds onto hope for some completely illogical miracle, thinking one morning we’ll wake up in a Wizard of Oz scenario where it was all a dream, or someone will call to say, “Hey, our diagnosis was wrong,” or “Don’t be mad, but we were totally kidding.”
  2. I was angry for the longest time, and what seemed worse than the anger was being fully aware that I was in a stage of grief and stuck there. I ignored it, I purposely chose not to talk about it, and when people asked me how I was dealing with it so well, I simply said I was choosing not to deal with it at all right now. During this stage, it was most difficult for me to be around my mother, because I felt as if my anger was directed towards her. It was frustrating, it was uncontrollable, and it was completely illogical.
  3. But most of all, I felt that once I typed it up and released it into the world, it was final. I was forcing myself to admit it, face it and let it out to never get back. There’s something very daunting about sharing devastating news with others–turning the key and pulling it out of the safe in our minds.

My mother was diagnosed with ALS. ALS is a disease that, as of right now, cannot be cured. It is considered 100% fatal, according to the ALS Association.

My beautiful, sweet mother, who raised me, taught me so many life lessons, laughed with me, cried with me, yelled at me, bent over backwards for me, grounded me, stood up for me and never missed a defining moment in my life, may leave earlier than I’m ready for her to go. She may never get to see her innocently unaware grandchildren grow up, and she may not live into her 90s, dancing and antiquing and caring for those around her like she’d always planned to do.

Vicki

Last year, so many individuals participated in the ice bucket challenge to raise awareness. People wanted to experience, if just for a second, the “feeling” of having ALS. Friends challenged each other, they laughed, they made YouTube compilations of buckets dropped on people’s heads, they donated and moved on with their lives. It was a lot of fun and games, many laughs, and it all went to awareness and the fight against ALS.

This year, I hope we can bring just as much awareness and help those fighting against ALS, but my wish is for you to consider something a little different. Here’s why…

My mother’s dedicated many of her years to health and general health awareness–her health, the health of family and friends and the health of her patients and clients. She was diagnosed with breast cancer in her 30s, fought through it, survived and changed not only her life, but the lives of so many people she came into contact with. She eats organically, rarely uses or ingest chemicals, frequents Farmers’ Market, takes Standard Process supplements daily, attends church and volunteers weekly, heads to the chiropractor, massage therapist, hyperbaric treatments and more, religiously. Her motto is to put effort into taking care of yourself now or pay (literally and figuratively) for it later. She’s wise, she’s persistent, and she’s the healthiest person I know–mind and body. Which is why it’s such a cruel twist of fate to have an unpreventable, invariably fatal, neurological disease bestowed upon her. It truly is the definition of unfair.

Last week, my mother closed down her office. As we cleaned and those who came to help walked out the door with the final items occupying her sanctuary, my mother and I shared a look across the room. Because I can no longer call my mom, because she cannot converse out loud with me anymore, I cherish looks. I walked across the room, bent over and hugged her as she cried, small and fragile. I knew, without a single word, that was one of the hardest things she’s ever had to do. And I am so sorry.

Afterward, as I drove alone along a familiar highway, I started crying, too. It was abrupt. It was a calm cry–I didn’t pull over on the side of the road to sob, there was no ‘ugly’ involved, I didn’t even reach for the tissues–but it was relieving. It was the first amount of solace I’ve felt, and it was simply because I’d come to the realization I wasn’t mad anymore. After months, just like that, I was no longer stuck in the stage of grief filled with irrational anger. It was also, coincidentally, April 30, the day preceding ALS Awareness Month. Because such is life.

As the feeling of solace swept over me, I realized I didn’t just want people to dump a bucket of ice water on their heads. I thought about all of the people my mother feels she’s letting down. I thought of all the people she feels like she was put on this earth to help. I thought of the voice she no longer has to share her knowledge of health and encouragement to those who need it and the strength she no longer possesses to physically help her clients and patients. I mourned over everything she’d worked for and dreamed of, all the plans she’d made and discussions we’d had about helping others. I worried her life was being taken away before she’d even really started. And then another feeling set in … determination.

As my mother struggles through the woes of ALS, I want to ask your help. I don’t want money (although donating is a wonderful bonus), I’m not asking you to dump a bucket of ice water on your head, and I don’t want you to feel sorry for anyone. I want you to do one simple thing because of my mother:

Do one simple thing to help your health. Whether it be heading to a Farmers’ Market, planting a few herbs, getting a massage, going to a Yoga class, giving up soda or just driving past the fast food restaurant and making dinner at home. Do one thing. Tell others to do one thing. Share this. Take a photo or type out a few words and send them to me or hashtag #AlwaysLoveSelf, so I can pass along the difference my mother continues to make despite ALS.

I will not let ALS stop my mother from making a difference in people’s lives. In fact, I’m making it the cause. We need to raise awareness, we need to continue the fight, and I will. Always. But from now on, to me, ALS stands for Always Love Self, because that’s the everlasting legacy my mother’s created.

Help us pass it along.

#AlwaysLoveSelf

If you feel moved to help raise awareness, please donate here today.

24 thoughts on “Embracing My Mother’s ALS

  1. I am so sorry you and your mom are dealing with this… it really isnt fair! I recently started taking better care of myself and what an awesome challenge you posed for others.. to do one thing to help their health. I know the stress of dealing with a sick parent, so I hope you take your own advice to heart during all this and take care of yourself as well! I will be thinking of you and sending lots of positive vibes your way!

  2. I really appreciate you changing the acronym to “Always Love Self”. I’m quite familiar with the disease and to create more awareness of it in a positive way is paramount. With positivity comes hope and determination. Yes last year people had fun with the ice buckets, and yes it raised some awareness, but we need to do more. The more people know about it, the more money can be raised for more scientific breakthroughs. I wish there were words that could be helpful. Just know, I’m thinking of you and your mom, and your family. As Lauren said, be sure you are taking care of yourself too. It will be too easy to be consumed by the stress.

  3. Thank you for being so open and sharing this. You and your mom are both strong women . Having a parent with a disease like that and seeing them deteriorate is hard. Talking about it is hard too. My dad was diagnosed with Parkinson’s a few years ago so I can relate somewhat to what you’re going through. He hasn’t progressed with his as far as your mom has with ALS it sounds like, it’s a waiting game for us, knowing what is coming but not when. Stay strong. Hopefully, I made some sense here, your post really moved me so I am rambling I think. <3

  4. I’m in tears finishing this. I send you so many positive vibes and love. It is true to just take even the smallest bit of time to do something for your health. After losing my Mom to Ovarian Cancer I started doing the walks and such as well. Any bit of awareness is some awareness.

  5. You told your story beautifully. It brought tears to my eyes. I think it is wonderful to challenge people to take better care of themselves as a tribute to your Mom. I accept!

  6. We will join you in this cause. My brother-in-law was diagnosed with ALS in 2001. He had a rare form of ALS that started in the torso. (Only 7% of ALS patients have this type of ALS.) He was diagnosed in November and passed in June leaving behind three sons ages 6, 10, and 14. Whatever we can do to ease the lives of people with ALS and their families we will do.

    1. So sorry for your loss, Shelah. So sorry. Thank you for joining. Anything you do to “improve health” a walk, a smoothie, a Yoga break, I’d love you to share with #AlwaysLoveSelf. I want this disease to impact others in a positive way while raising awareness.

  7. What an amazing idea to spread awareness for this disease and to show that your mother will always have an impact. I will definitely be participating.

  8. Am in tears from reading your words, from hearing you talk about your mother. The glances and the look she gave you. Tweeted and will keep sharing this piece. Many hugs and love and prayers sent to your family. <3

  9. This is such an amazing, beautiful post. I am so, so sorry to hear this news, but so proud of you for writing such a brave post. It’s clear how much love you have for your mother. I’ll be thinking of you and hope you’ll check in here along the way with updates. Much love to you both!

  10. Omg I’m so sorry you guys are going through those:-/ glad you’re bringing awareness though!! The more people know about things like ALS the better 🙂

  11. Tessa, I’m so sorry to hear you’re going through this. It’s so inspiring what you’re doing! Such a difficult thing to go through, but you’re using it as an opportunity to encourage others. I’m sure your mom is proud of you!

  12. Your mom raised an amazing daughter. I think you are handling this all so well and in stride. Determination. Yes – that’s definitely what it takes and both you are her are going to continue to inspire others!

  13. You are an amazing woman to make a positive spin on what could be one of the hardest things to deal with in your life. Bless you and your family. I will make sure to use the hashtag when I can!!

  14. Thank you so much for sharing. I am a care services coordinator for the ALS association LA/MS chapter and I hope you do not mind that I shared this one my Facebook page for an inside look of how hard it can be to deal with a loved one having ALS. I hope your moms journey is filled with wonderful lasting memories with you and your children! Spreading awareness is the first step to finding a cure!

  15. I am an ALS warrior with two beautiful grown daughters, 3 (and 1/2) grandchildren, a husband of 42 years (yes, i was married at 7..hehee), many many friends and family members. As a lifelong “nurturer and helper”, I share your mom’s feelings. We are not done with this thing called life! I just turned 60 and I am FINALLY confident in who I am and my role in this crazy world. My family’s discomfort and sorrow are my concern during this crazy ride with the devil. But, like your mom, I raised my girls well and they are raising their children with confidence and compassion. My never-ending research follows the same line as your mothers lifelong pursuit for clean and healthy living. I am over 5 months into a clinical drug trial, and my decline is marching on. This is my summer of Advocacy. Within my small community and branching out to bigger areas within my state. With ALS Awareness walks, newspaper and television coverage, as well as (our ever present) social media. You and your mother have a wondeful message to share. Get your local media involved and share her legacy with as many people that you can. Make her the face of ALS. God bless you in this journey. #

  16. Your story touched me in so many ways, I am your Mom, you are “Singing MY Song” and my grown children are you.
    It has been almost 3 yrs into my symptom onset and I have been keeping an online Blog to keep family and friends updated. It also allows me to vent, stay in touch (I live out of state) share the Love, create ALS awareness and much more.
    The most difficult part of the Blog was writing down as parts of my body started to fail, I felt there was no returning, it made it too FINAL. I felt like I was giving in, not putting up the good fight! I also put it off, not writing anything for several months and yes, I held back on how I really felt about it, but it was good to wade into the water slowly. I am able now to be more forth coming on how bad it really is, and how difficult it is dealing with this disease. I AM strong, I AM hope, I AM love! “ALWAYS LOVE SELF”

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