Embracing My Mother’s ALS

Tessa Shull is a personal assistant to two toddlers, a wife, and a social media specialist/writer who resides in the heart of America, Kansas City. Her mother was diagnosed with ALS in 2015, and since then, it’s been important to find a way to continue making a difference, for both her and her mother, despite the disease. You can check out more of Tessa’s writing on her family and lifestyle blog, homemadeexperience.com.

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

In 2014, 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 to The ALS Association 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.jpg

17 comments

  1. Beautifully written. I sobbed after reading your words of love and hope, and how you describe your feelings. It struck something inside of me… I can’t explain it. I felt the immense amount of love that you have for your mother.
    And you are right it is unfair. My 20 year old grandson was diagnosed with ALS 2 years ago, 2 months before his high school graduation. His dreams to attend film school on a scholarship were shattered. He can’t walk anymore, he’s lost the use of his arms and hands, and his speech is unrecognisable. It is heartbreaking. I grieve for him, and for my son.
    You inspired me… I want to be in the place where you are now. I don’t want to be angry anymore. Thank you for sharing your story… it gives me hope.

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  2. My cousin was recently diagnosed with ALS at the age of 54. Of course we are all devastated and scared for him and his wife and children. We all did the Ice Bucket Challenge, never thinking that one of our own would soon be diagnosed with ALS. Thank you for this. I will be reposting it on Facebook!

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  3. In 1991, my mother was diagnosed with ALS . It was diagnosed 3 months after she retired from teaching for 35 years. As your mother did, she ate healthy, exercised, didn’t drink. She had cancer 15 years before with radiation as treatment. At the time, doctors thought that the treatment may have caused the trauma to her genes that brought this on. She was accepted into a double blind drug study, but it ended up being discontinued after a year due to no improvements being found in any of the patients. Nonetheless, she was grateful for having been included in the study. It is a cruel disease that is now getting some notice.

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    1. I lost my mum 7yrs aga at the age of 53yrs…not easy at all when you know nothing can be done to help..hopefully a cure will be found soon.Seeing your beloved mum like that is not easy then after trying to accept mum’s loss dad was diagnosed with cancer…too hard to loose both parents at young age.

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  4. Beautifully Written & thank you for sharing. I just lost my husband on April 7th to this horribly cruel disease. He was 67 years young. We first started to see signs of upper extremity weakness in late November of 2012, spent the first year seeing numerous doctors and Neurologists, of which one only diagnosed him with what is called Brachial Amyotrophic Diplegia (BAD or Man in a Barrel Syndrome). The doctors indicated that his weakness would only be confined to his upper and they would not diagnose him with full-blown ALS- only that this was a “form of”.
    So we began our journey of living with our “new normal” which over-time spread to his neck, affecting his swallowing, his legs, speech and finally his breathing, sadly losing our battle and fight to what was ALS the whole time. My husband was a Vietnam War Veteran, which along with many other Vietnam War Veterans who develop neurological issues, became a casualty of this war many many years later due to agent orange.
    I hope and pray that one day research will prove a cure so that others won’t have to suffer like my husband did and other families won’t have to bury their loved ones far before their time.

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  5. My mom, my best friend, was diagnosed this past August 2015. Thank you so much for sharing this, as it makes me feel not as alone in these indescribable, unpredictable feelings I’m going through each day. Sending love and prayers to you and your Mom. I pray that a cure is found, and I, for one, will love and take care of myself more after reading this, in honor of your Mom. Hope you’ll do the same for mine.❤️

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  6. My very close and very dear relative of mine was diagnosed this year with this incurable and devastating disease ALS as of now.. Thanks for sharing your pain. But iam hoping that 2016 is going to be a pivot year for finding a cure for this disease.

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  7. Beautifully written. It’s the most devistating disease ever! Pray every day for a cure or at least a drug to slow this hell on earth down.

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  8. Thank you for sharing your story. I was diagnosed in Feb 2016. My onset has probably Bern going on for close to two years. I could keep finding excuses for my dropped foot, fir the weakness that was going on in my left hand. Then it took from Aug to Feb to get the tests done and come up with the cause of why I felt so worn out and knowing something was not right. I needed to hear something positive or at least doable while going through this process. Nearly every other post I have read was from the family survivor that just stated how horrible and hard it was watching their family waste away. Thank you for sharing your beautiful story. It has uplifted my spirits. God Bless your Mom and you.

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  9. I just found out I have als I’m hoping for a cure I’m 77 years old I had a good life so tell everybody it can happen to any one hope God help us and praying for your mom and everybody with this awful disease God bless

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  10. No human of any age should experience ALS. I lost my Mother in 2002 to ALS. She passed in her 70’s. Unable to speak and eat made life very difficult. My intelligent,kind, and very brave Mother is my heroe.

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  11. This hits so close to home. My mom passed in 2012 from ALS, she was like yours very healthy and very independent. Being her care provider during her illness was one of my best accomplishments in life and now feel truly blessed it was solely my job. In my family we are all too aware of this horrible illness as we have the genetic form of ALS. I have lost my grandfather, my aunt, my cousin, my uncle and my mother due to this hideous disease. 3 generations of ALS/5 family members. I wish for you and your mom alot of peace and grace as you head down this path. Love and patience always.

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  12. I lost my mom to this horrible disease in 2012, 22 months after she was diagnosed with Bulbar Onset ALS. It took from her all the things she enjoyed most — talking, singing (at church), going. She had always taken care of herself. She never drank or smoked. She was a petite little thing with beautiful white hair. Perfectly healthy and very active until ALS came to her life. I’m still angry. No one deserves this demon of a disease. Little by little it stole her life. But she never once complained. Never asked “why me?” Never became depressed or bitter or even scared. She maintained her dignity, grace, and faith right up to the end. What s lesson for those of us left behind! It’s still hard to go on without her. But when I am struggling with the extreme sadness, I keep asking myself “what would mom want me to do?” And the answer comes. She would want me to go on with my life and be happy. I don’t think I’ll ever be completely happy again. But I know she is in a place where she can walk and talk and sing again. And I pray I’ll see her again some day.

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  13. I cried when I read this . My mom has been battling this terrible disease for 3 years now . We believe it has been longer than that bc ,no one could tell us what was happening with her . Finally the Cleveland clinic gave us a diagnosis and let me say nobody ever deserves this nightmare!!! It truly is a daily heartbreak. Thank you for your beautiful sorry and to every comment bc it makes me feel like my family isn’t alone ❤️

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  14. After almost 3 years of symptoms, I was diagnosed with ALS 2 years ago at age 77. Yesterday was my 79th birthday. I will not let ALS defeat me or change my zest for life. While most people worry about how and when they will pass away, I already have a good idea about my own mortality and timeline. I am not wasting the time remaining until I can no longer travel, eat what I like, etc. I have been given my wake up call — time is limited, so I am enjoying myself every minute of every day! I will not let ALS rob me of my positive attitude or my ability to make lemonade out of lemons!

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  15. Thank you for these words. You manage to write what I feel everyday since my mom was diagnosed with ALS. I had this picture of my mom in my head with her potentially grandchildren at her 90s….she may never even see me get married but I will for ever keep that energetic full of life strong woman she is.

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