Welcome to My Column, ‘The Mighty Mind’

Welcome to My Column, ‘The Mighty Mind’

Welcome to “The Mighty Mind.”

When I was diagnosed with ALS at age 28 in 2015, I felt like I had lost everything. My body, without warning or reason, had turned on me, and that meant the end of so much. My teaching career, and dreams of motherhood and growing old with my husband were swept away like sand when I believed they were stone.

These major losses hit me fast. Other, less obvious ones, crept in slowly, adding weight to my chest, one suffocating ounce at a time. If I heard a song I liked on the radio, I would move to dance before remembering that my feet had grown dangerously heavy and clumsy. I used to enjoy any activity that involved rhythm — particularly hip-hop and Zumba. I also loved going on adventures with my husband. We canoed, hiked, and hunted for fossils. Before losing my voice, I spoke French and a decent amount of Russian. I was passionate about languages, and now the work I started in sixth grade and continued through undergrad would be for nothing.

My perspective changed a year after my diagnosis, when ALS Awareness Month rolled around. My family was working hard, fundraising and sharing facts about ALS on social media. But I did nothing. My guilt over leaving the fight to my loved ones spurred me to action. My mom had been encouraging me to write about ALS since my diagnosis, knowing instinctively, the way mothers do, that this lifelong passion would allow me to process and cope with my struggle.

I wasn’t so sure; I hated even thinking about ALS. How could spending time committing my thoughts and feelings to paper make me feel better? Still, I must have known on some level that she was right, because I decided to contribute to ALS Awareness Month by writing a short post on Facebook each day describing an experience in my new normal.

I imagined a few quick sentences would be adequate. Much to my surprise, the first post I wrote was several paragraphs long. Once I started telling the story of how I was too uncomfortable to sleep, I couldn’t stop. I wrote for an hour about feelings of helplessness that weighed on me when I first realized that I was too weak to roll over or adjust my blankets, and about the gut-wrenching guilt of having to wake my husband every few hours to reposition me. By the time I clicked “share,” my mind was already buzzing with ideas for what I would write tomorrow. That night, I went to bed happy.

My daily posts quickly turned into a blog with a shockingly large number of readers. For the first time since my diagnosis, I felt exhilarated and full of purpose. I came to see that in my mind, I was free. It is the one part of me that ALS can’t tame. My mind is a mighty force, its own universe apart from my disease. Lightning storms between firing neurons create constellations of thought and galaxies of feeling. Ideas dart like comets across the vast, wild frontier.

In this column, I will share ways to protect and strengthen your own magnificent universe. In other words, this column will focus on mental health. Topics will include everything from maintaining relationships to navigating sadness, from rediscovering joy to finding purpose. I will also explore mindfulness as a coping mechanism. Each column will include concrete practices to improve your mental health and quality of life. Welcome to “The Mighty Mind.”

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

12 comments

  1. Daniel Hale says:

    Colorado18yr ALS Research predicted the failure of Radicava because medicine is light years behind. It was easy to see. After decades of funding and gala events to further ALS research, medicine still cannot explain how ALS is triggered or caused. Therefore all you have is a pile of fifteen minutes of fame stories and more funding to studies that are digging in the wrong canyon. With absolutely no real incentive to move to a correct one. Everyone gets paid very well to fail so why move. Ninety percent diagnosed with ALS carry no gene. Yet medicine wags the dog by looking at the genetics. People dealing with the horror of ALS need a recovery methodology to prove the physics. Wag the tail. Non funded research came through simply because it had the incentive TO succeed. And solved how mammals “trigger” ALS unknowingly. Recovery from physics not the failures of medicine. Colorado ALS Research email-houston1854@yahoo.com Twitter 1854R

    • Carol Mongiello says:

      As far as the gene thing, I wonder if there has been a comparison of people who have als. I’m saying this because maybe there is something they all have in common. My son has a MBA, was physically fit, participated in challenges and was in a muscle man competition at one time. I’ve attended a support group for als for a short time. The people affected with als, a teacher, a lawyer, a dentist and a doctor. Is their some common factor possibly in their brain function? Daniel you don’t sound hopeful. I wish there is a cure in the very near future as my son has rapid progression als.

  2. Carol Mongiello says:

    Thank you. Can’t wait for your next post. I’ve witnessed a lot of things you have described in my son. He was diagnosed almost 2 years ago. Also I am looking forward to THE RIGHT TO TRY ACT legislation to be passed to offer more hope with people with als and other terminal illnesses. I type als in small letters as that is what I wish it would be some day, curable. God Bless you and your family.

  3. Kate Alderman says:

    I can’t wait to read more. I was diagnosed at 27 and will celebrate my 41st birthday tomorrow! We need support from each other on our crazy journeys with MND/ALS. All the best x

    • Thanks for the kind words about my column and congratulations on your upcoming birthday – how impressive! I’m determined to survive for the cure. Any longevity secrets? I’m going to need a ventilator in about four years, so I am always really interested in information about living post-trach. Forgive me if I am being too forward!

      • Allie says:

        I am also 27 and have yet to be diagnosed, but we’re basically awaiting for the inevitable at this point. Do you have any suggestions on how you’ve lived so long? I think it’s important for us to share tips and support. Thank you!

        • Allie, I am so glad you reached. I am sorry this is happening to you. The first month or two after diagnosis is the hardest time period in the whole experience. I do have tips, but first I want to tell you to get a flu shot and have your doctor put in an order for a pneumonia shot immediately. The major cause of ALS deaths is lung failure, so protecting your lungs should always be your priority. I have a lot of tips about increasing your lifespan, and I am still trying to get them all down. I hope to finish Monday evening. I think you should consider what you have going for you in the meantime. I have found power in remaining positive and nurturing hope, which I think improves my quality of life and consequently my health. We have a lot to feel good about, such as the rapid progress in research that lead to radicava, the first new drug for ALS in 22 years! Also, since you were diagnosed young like me, you are more likely to have a slower progression. As you will see in my list, you are not powerless. I sense that you are a proactive and strong-willed woman who is ready for battle. This will serve you well. I will write again soon. Feel free to contact me anytime at all. Best, Rachel – Rachel.doboga@gmail.com

  4. Lor says:

    Rachel,
    THANK YOU for your courage and willingness to reach out and share your world -I found your blog and for the first time in a while, I smiled – my husband was diagnosed a few months ago and I feel like he and I are wandering a desert to despair. Your words are so encouraging and reassuring–all God’s blessings to you and your family.

  5. Mir says:

    Love you, Rachel. You’re a crazy powerful writer. Sorry for the delay with my video. We had to chop all the plants down early due to excessive rain, so I’m going to collect snow off the porch instead. Peace out.

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