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Have you ever really thought about time? What it is and what it means? When you take a deep dive into time, you&#8217;ll find there are two dominant stages: memories of the past and <a href="https://alsnewstoday.com/columns/trying-prepare-future-its-worth-thought-now/">aspirations for the future</a>. The present is the stage of doing, but it is divided between past and future.
Yes, time is an interesting phenomenon. It is also an integral part of our lives. While it may not be the most important thing in life, it ranks right up there with oxygen.
For patients with <a href="https://alsnewstoday.com/what-is-als/">ALS</a> or other time-centered terminal illnesses, who are given prognoses of months or years, time plays a major role in our lives and the lives of our loved ones. Jim Croce was onto something <a href="https://www.youtube.com/watch?v=Q29sOLG8xGE" rel="nofollow">when he sang</a>, &#8220;If I could save time in a bottle/ The first thing that I&#8217;d like to do/ Is to save every day till eternity passes away/ Just to spend them with you.&#8221;
[recommended-reading id=85137]
<h3>Making the most of whatever time we have</h3>
<a href="https://alsnewstoday.com/columns/living-with-als-means-unraveling-my-concept-time/">The thought of time</a> running out obviously creates a sense of urgency. It also leads to impatience among those of us who are unable to physically do things for ourselves. On the other hand, running out of time prompts us to do positive things like getting our affairs in order and initiating more genuine experiences with our friends and family.
Winston Churchill coined <a href="https://wordhistories.net/2019/07/28/riddle-wrapped-mystery-enigma/">the phrase</a> &#8220;a riddle wrapped in mystery inside an enigma.&#8221; I will humbly take the liberty to add to this great man&#8217;s words by saying &#8220;covered by a paradox.&#8221; That Churchill phrase was not in reference to time, but it certainly applies in this case.
<a href="https://alsnewstoday.com/columns/doc-wheres-instruction-manual-living-als/">When I was diagnosed</a> and given information on ALS, I thought I would only live for about six months. The doctor explained the disease in such a way that made me believe that the prognosis was a foregone conclusion. He said all I could do to add two or three months before my ultimate demise was to take <a href="https://alsnewstoday.com/rilutek-riluzole-for-als/">Rilutek</a> (riluzole), a therapy that can slow <a href="https://alsnewstoday.com/stages-of-als/">ALS progression</a>.
I decided not to take it because that short period of time was hardly worth risking a liver problem, which he said was a side effect. After I finally saw a new doctor, who took the time to fully explain my prognosis, I started taking Rilutek. That was nine years ago.
I had no idea how long I would live, but I knew I had to be judicious with my time. I continued to write my newspaper column, wrote five books, and had many public speaking engagements until I could do it no longer, all because I used my time.
One of the responses that make me uneasy is &#8220;I don&#8217;t have time.&#8221; Truth is, we all have the same 24 hours each day. It&#8217;s just a matter of priorities. We cannot save time, we cannot stop time, we cannot slow it down, we cannot speed it up, we cannot make it up, and we cannot control it. What we can control is our use of time.
To my fellow travelers on the ALS road, don&#8217;t give in to the urge to say, &#8220;What&#8217;s the point of living with this miserable condition?&#8221; Don&#8217;t give up on yourself. You still have time to do something for yourself and for others.
I will end with another quote by comedy writer Robert Orben: &#8220;Time flies. It&#8217;s up to you to be the navigator.&#8221;
<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.

ALS or not, we must learn how to use our time wisely

Last week I felt sad. I had to unravel a knitting project that had consumed a good part of my summer.
“What’s the big deal?” you might ask. Well, the big deal is that <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a> has me feeling hypersensitive to <a href="https://alsnewstoday.com/columns/husbands-als-progression-makes-future-difficult/">time</a>. How I spend my time and how my slowness affects <a href="https://alsnewstoday.com/columns/als-time-zone-moving-different-pace-tips/">the time I take to get things done</a> are measured against how much time I have left to do things independently, without depending on a caregiver. That also includes my creative time.
Before <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, that creative time felt never-ending. As a kid, I relished waking up on the first day of summer vacation. I knew I could spend the days ahead doing a million “creative kid things” or doing nothing at all. In college, I lost countless hours meandering through the campus bookstore. The arts, crafts, and historical costume sections were magnets for my attention.
Time seemed endless. Being unproductive felt good.
[recommended-reading id=87237]
<h3>Time is important</h3>
But now that I’m living with ALS, being productive has taken a front seat, and I feel the pressure to make every minute count. That’s why, when I found myself holding a ball of yarn that minutes before was a formless but partly knitted scarf, I felt a profound sadness. I&#8217;d spent the summer creating it and now had nothing to show for all the invested time and energy.
I think others living with ALS have experienced similar moments, whether it be a creative project gone wrong, a long online document carefully typed out only to suddenly disappear in the abyss of cyberspace, or any number of goals we attempt to complete before ALS robs us of movement.
To save my sanity and restore my confidence, I had to reframe the unraveling of my work. Sitting quietly, I focused my thoughts on my tangled concept of time and why I felt I&#8217;d squandered it.
First, I had to admit that the real reason I pulled the project apart was because it turned into a knitting nightmare. The pattern was off, the length wasn’t right, and even though I trudged along and forced myself to knit “just one more inch,” in the end I wouldn’t be wearing it at all. Better to start over with a rewound ball of yarn than to see a never-to-be-worn scarf at the bottom of the drawer.
Then, I reminded myself to let go of the way things are &#8220;<a href="https://www.healthywomen.org/content/blog-entry/are-you-shoulding-all-over-yourself" rel="nofollow">supposed to be</a>.&#8221; To not be rigid about outcomes. To be willing to step back, see the big picture, and adapt. It was time to use my strategy of <a href="https://alsnewstoday.com/columns/adapt-strategy-for-facing-change-self-care/">adapt, learn, and survive</a>. This is how it works:
<ul>
<li>Take time to reflect on what changed and identify what accommodations are needed.</li>
<li>Learn by practicing self-care, reducing stress, and noticing when things go well.</li>
<li>Survive by staying committed to daily goals and life goals.</li>
</ul>
I’m always surprised how something simple and totally unrelated to ALS, like a bungled project, can change my perspective about living with the disease.
We all have times of frustration and discouragement, but maybe my mental strategy will help change your perspective, too. It sure did for me.
Let’s continue to help each other learn to live 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, <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.

Tag: time

ALS or not, we must learn how to use our time wisely

Living with ALS means unraveling my concept of time