A SUPER-powered WP Engine Atlas Test Site

Joe&#039;s Atlas Experimentation Site

After a great deal of introspection, I decided for this month&#8217;s column to reflect on my life as it stands now. I wanted to write about it without being too ominous and dreadful, but I don&#8217;t think that&#8217;s possible.
My <a href="https://alsnewstoday.com/columns/ways-music-has-comforted-us-while-living-with-als/">love for music</a> prompted the headline, because within the music lexicon, some keys make us happy, some make us sad, some bring relaxation, and others make us want to move our bodies. The <a href="https://www.piano-keyboard-guide.com/d-minor-scale.html" rel="nofollow">key of D minor</a> is one of the darkest sounds. <a href="https://www.rollingstone.com/pro/features/music-d-minor-saddest-key-1210591/">It&#8217;s been described</a> as tragic, sorrowful, somber, and melancholic, which best describes my current feelings.
Like music, life comprises a broad spectrum of emotions, pitfalls and high places, success and failure, victory and defeat. <a href="https://alsnewstoday.com/what-is-als/">ALS</a> brings up those same realities, but with a different twist.
[recommended-reading id=81087]
Our bodies face constant and <a href="https://alsnewstoday.com/columns/living-with-als-side-frequent-frustration/">relentlessly degenerative</a> physical abilities. As of today, nothing short of a miracle (I do believe in miracles) can cure us, which wouldn&#8217;t be as bad if the degenerative activity would cease. (Many people live for decades with permanent disabilities and diseases.)
I&#8217;ve just gotten to the &#8220;What&#8217;s the point?&#8221; <a href="https://alsnewstoday.com/columns/als-paralysis-devastating-patients-caregivers-trap/">stage of my disability</a>. For the past few years, I&#8217;ve been living for my family and trying to get us on the right track regarding my absence. I believe that goal has been reached.
I&#8217;ve been affirmed and encouraged by friends who tell me how I&#8217;ve helped so many others through my example of continuing to be productive. It&#8217;s great to have supporters who make deposits in my life while I can enjoy them.
Despite all the positive comments that have come my way, I&#8217;m very tired of the life I&#8217;m living, a life in which nearly every song is in the key of D minor. I wouldn&#8217;t end my life unnaturally, but I&#8217;ve lost a sense of purpose, so I won&#8217;t take every measure available to extend my time.
You could ask 100 ALS patients how they get through this disease, and you&#8217;d probably get 100 different answers. As for me, I&#8217;ve had a long and blessed life, and my balance sheet shows a significant net worth. I&#8217;m so grateful to know that I&#8217;ve had more highs than lows, and that&#8217;s good enough for me.
<h3>Acceptance is hard</h3>
The hardest thing about writing this particular column are the feelings it will conjure up in those who care about me. Let me share a lesson l learned from my mother&#8217;s death.
She was feeling pretty bad one day when I was visiting her. Bedridden and in constant pain, she wouldn&#8217;t eat her favorite ice cream that I&#8217;d brought her. I became frustrated, and during our limited conversation that day asked, &#8220;Do you want to give up?&#8221;
Without hesitation, she said, &#8220;Yes.&#8221;
I was hurt. How could she want to leave me? She died a short while afterward. The lesson learned was that I was placing my selfishness over her suffering. She had just as many reasons for letting go as I had for her to hold on. Now I stand in the same place she stood and feel the same way she felt.
As I continue to live in the key of D minor, although I can&#8217;t decide when it will be, I hope that those I leave behind, those who want me to stay here, will only want what&#8217;s best for me.
I&#8217;m sorry for the candor of this submission. But my moniker, after all, is &#8220;<a href="https://alsnewstoday.com/columns/doc-wheres-instruction-manual-living-als/">Outspoken</a>.”
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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, and are intended to spark discussion about issues pertaining to ALS.

Living my life in the key of D minor 

In the Jan. 23 <a href="https://podcasts.apple.com/us/podcast/stop-looking-for-the-perfect-job-a-good-enough-job/id1474245040?i=1000595961715">episode</a> of &#8220;The Happiness Lab&#8221; podcast, Simone Stolzoff, author of the book &#8220;The Good Enough Job: Reclaiming Life from Work,&#8221; argues that we should stop hunting for the perfect job.
Stolzoff and podcast host Laurie Santos, a psychology professor, discuss how society&#8217;s view of work has changed over the course of a generation. Today, for example, rather than work being simply a way to pay the bills and support a family as it used to be, we’ve made it a major part of our identity. Stolzoff suggests that we should change our mindset to accept that a job may be just &#8220;good enough&#8221; — meaning that it&#8217;s a means to an end. We can find meaning in other areas of our lives.
Because my husband, Todd, has <a href="https://alsnewstoday.com/what-is-als/">ALS</a> and is paralyzed, he needs a full-time caregiver. I took that unpaid “job” because his <a href="https://alsnewstoday.com/columns/medicare-guessing-game-bureaucracy-rights-dme-hha/">insurance</a> doesn’t cover his care, and I don’t have the ability to make more than what it would cost to hire someone to care for him.
I looked for something I could do from home so I&#8217;d have the flexibility to jump up <a href="https://alsnewstoday.com/columns/secret-finding-balance-caregiver/">whenever Todd needs my help</a>. I’ve written <a href="https://nevastory.com/copper-island-novels/">a series of novels</a> and <a href="https://kristinneva.com/toothella/">a children’s book</a>. I make and sell wreaths at Christmastime. These pursuits have been good <a href="https://alsnewstoday.com/columns/how-im-finding-solace-creative-work-als-caregiver/">creative outlets</a>, but haven’t produced enough income to allow me to do something other than be Todd’s caregiver. So his daily care falls on me.
[recommended-reading id=81790]
At times, I can’t believe this is our life. In a culture that celebrates the American dream and the underdog, it’s hard to live with an incurable disease like ALS. As the disease progresses, <a href="https://alsnewstoday.com/columns/husbands-als-progression-takes-us-different-season-life/">the losses continue</a>, and it becomes hard to accept an increasingly difficult &#8220;new normal.&#8221; I wish we could do what other families do, such as going on vacations, walking on the beach, or even attending concerts or sporting events.
Before we fundraised to hire night caregivers, I wasn’t getting enough sleep, and life was too difficult to say my job was &#8220;good enough.&#8221; When Todd gets a cold or <a href="https://www.youtube.com/watch?v=ITcMaevMO04">needs help coughing</a>, and I wonder if he’ll pull through, the job isn&#8217;t &#8220;good enough.&#8221; When I’m tired, or a night caregiver cancels on me, I can’t get into a positive mental space. In those moments, I wish my husband’s care was not my job.
But on some days, I can say, “It’s good enough,” because in this <a href="https://alsnewstoday.com/living-with-als-2/">life with ALS</a>, I still have my best friend, we still have our time together, and we have the kids to raise. Those are meaningful things.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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, and are intended to spark discussion about issues pertaining to ALS.

‘Good Enough’ Means Something Different in Life With ALS

During the years I taught yoga, I always enjoyed explaining the concept of effort and ease. It’s the feeling of holding a yoga pose with the right amount of force. Not too much, not too little — just right.
Little did I know how, years later, an expanded version of effort and ease would be a dominant factor in my life with <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. Every. Single. Day.
<h3>How?</h3>
I’m sure many ALS patients can relate when I say that before my <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, I took it for granted that I’d always be able to move with ease. But once my <a href="https://alsnewstoday.com/symptoms-of-als-2/">ALS symptoms</a> emerged and progressed, I was shocked at the amount of effort needed just to do simple things. Suddenly, my shoes felt heavy, getting dressed became difficult, and my hands cramped while holding a toothbrush.
Frustrated, I’d just try harder. Which was both unproductive and exhausting.
Likewise, my mind was in turmoil. I kept replaying the moment the doctor told me I had ALS, sending me into <a href="https://alsandwellness.blogspot.com/2022/08/banishing-my-als-thought-loops-and.html">thought loops</a> imagining worst-case scenarios. Mornings? I’d duck back under the covers. It was easier to take the path of least resistance and spend the day sitting and doing nothing.
[recommended-reading id=81485]
<h3>I was the student now</h3>
That’s when my yoga training kicked in. I pondered how I could apply the concept of effort and ease to my new normal, <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>.
As I <a href="https://alsnewstoday.com/columns/prepare-prevent-strategy-living-with-als/">recently wrote</a>, developing a personal plan to prepare for possible symptom changes helped ease my worries. I felt empowered addressing the question, “What can I do right now?” I followed the adage, “Work smarter, not harder,” and began using a lightweight rechargeable toothbrush. My closet now held only clothes I could easily manage. The complicated and challenging ones were all donated.
Instead of pushing my body through a lengthy workout, I broke the exercise segments up into short bouts that I could easily fit in throughout the day.
And I began practicing &#8220;<a href="https://alsnewstoday.com/columns/als-challenges-dont-keep-me-from-showing-up/">showing up</a>&#8221; — not only would I get dressed up for the day, even if it would be spent at home, but I also showed up mentally.
I created things to do, contacted friends to see, and researched places to go. All of this gave me a <a href="https://alsnewstoday.com/columns/living-purpose-projects/">sense of purpose</a>, and better yet, the time spent doing those things was time I didn&#8217;t spend thinking about my ALS.
I was finding the balance of just enough effort and just enough ease to help me navigate the challenges of living with ALS. I believe this is something we all can do — and you can do it, too.
Together we can learn to live well while living with ALS.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. 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, and are intended to spark discussion about issues pertaining to ALS.

Tag: life

Living my life in the key of D minor

‘Good Enough’ Means Something Different in Life With ALS

My Life With ALS Is About Learning How to Balance Effort and Ease