A couple weeks ago one of my posts got a comment from a brave reader with a very limited amount of time left to live. The reader was near the end of the dying process stages, of which there are three (the early stage, the middle stage, and the final stage). The different stages have varying levels of functioning. And so, I was really touched that anyone would spend their remaining time reading this blog.
While we are all faced with a finite number of days left to live, most of us have no idea exactly how many. So when this person left a comment describing what it was like to know, I immediately started thinking about how I spend my time — often on things like writing, getting my needs met, spending time with loved ones, and raising awareness for the disease that has made time more valuable to me than before I got sick. And while my life often feels like a merry-go-round, I can’t imagine spending my time any other way given my circumstances.
The dying process stages, as well as the actual state of being sick, is a very personal experience of which one may react in any number of ways. If you are wondering about the process of dying from cancer or just generally the process of dying, Hospice is a good place to learn. The website has a lot of useful information.
I’ve come across a few noteworthy examples of people reacting differently to illness. I recently listened to an episode of the Modern Love podcast, which takes essays — usually about love for another person, pet, or pretty much anything — written for the New York Times column of the same name. I have come across some truly remarkable, often breathtaking, essays in Modern Love. The one I heard the other day was no aberration.
The essay was eloquent and honest, but also insightful. It was a story of a woman whose husband was diagnosed with terminal brain cancer. What I found most remarkable was the husband’s response to his illness. When faced with a finite number of days — fewer than most people — he chose to spend his remaining time and energy on what mattered most to him. This, to my surprise, did not include raising awareness for his cancer.
I’m not sure why I was surprise, perhaps because I am so fervent in my crusade to raise awareness for MECFS (myalgic encephalomyelitis / chronic fatigue syndrome) or maybe it was the level of voluntary ignorance this man chose when faced with understanding his condition. He had no desire to learn about his cancer, he barely acknowledged its name. But if you put his response in context — only a year left to experience everything you have ever loved in this world and everything else you have yet to discover — its pretty clear why he chose to ignore cancer.
Although it’s hard for me to say what I would do in his position, I can definitely see the logic behind spending your remaining time on things more nurturing to the soul than researching some evil, destructive illness. For the man in the Modern Love essay, and others like Paul Kalanithi, who chose to spend his final days writing When Breath Becomes Air, as well as Randy Pausch who wrote The Last Lecture — an insightful memoir about his dwindling time left on Earth — I imagine the choice wasn’t difficult to make.
If I remember correctly, Kalanithi wrote about spending precious time with his infant daughter and Pausch wrote about an insightful time when he was charged an extra $15 at the grocery store. The latter really stuck with me. Pausch weighed the value of that $15 with the value of the time it would have took to sort out the mistake. He chose to spend the time with his family rather than talking to a cashier.
Although it goes against every instinct I have ever had, I hope I would have done the same thing. Any time spent with loved ones is much more valuable than $15, especially if you are in the stages of the dying process.
But even if the choice doesn’t involve time or money, I can still see why one might choose not to focus on illness and the dying process stages.
Michael Kinsley, the founding editor of Slate, was diagnosed with Parkinson’s about a decade ago, but he chose to ignore the disease for the most part. In a wonderful essay, “In Defense of Denial,” he wrote:
So I see a good doctor, take my pills most of the time and go about my business. I couldn’t tell you some of the most basic things about Parkinson’s and how it works.
Although Kinsley has more time to work with than the aforementioned cases had when they found out they were sick, he had made similar choices:
Skip the Democratic Convention to go kayaking in Alaska? Absolutely. Do it now, in case you can’t do it later.
These examples of time and illness have got me reflecting on my own situation. I have been sick for more than six years now, bedbound for more than two, and while I have always aspired to spend my time wisely, I suppose that’s a relative statement. Is one of the most rewarding uses of my time and limited energy to raise awareness for a disease in desperate need of research? Yes. However, my situation is different. I could die from MECFS, sure, but is it going to happen soon? Probably not.
Either way I can relate because I don’t know how much time I have left on Earth, and while it could be decades, my quality time is likely to be far less. Time riddled by pain and misery is not enjoyable, quality time. In other words, while I may not directly die from MECFS, it could reduce my quality of life so low — as it did for the year I was unable to speak or eat — that I may end up wishing I had spent more time nurturing the relationships I have with my loved ones.
That said, my health as it stands is enough that I can do both. It currently allows for both time and energy to be used for writing articles that raise awareness for MECFS and spending time with people I love. Yes, it often wrecks my body with pain and weakness, but it’s so worth it. I would rather be in pain doing what I love and being with the people I care about than being in less pain (let’s be honest, I’m gonna be in pain regardless) and not doing anything rewarding.
I’ll admit that death and the dying process stages are not something I like to think about. But when I do, I often find myself wanting to spend more time serving a purpose and being with people I love, but if there’s one thing I know about fate, it’s that it doesn’t play favorites to those who are sick and short on time. If anything it does the opposite, so we must make the best of our time and that means, without a more eloquent way to put it, doing whatever the hell we want.
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Good article, this is why I chose a family trip to Maui now and want to travel before retirement … I may never get retirement and I may not be in heAlth later so much that I could enjoy it.
Hey I know you! Thanks for reading this and I think you made a really good choice. I actually saw your post on FB awhile ago about doing the trip for your kids’ birthdays. Smart thinking!
Every day when I sit down to write the continuation of Pride’s Children, my trilogy with a CFS main character, I ask myself if this is the way I want to spend my time. I’ve been ill for 27+ years, and it’s taken me 15 to get to publishing the first book, and another 1.5 to get as far into the second as I am.
My only fear is that I won’t finish – but that’s not up to me. Working on it with my bit of good energy is both what I want to do, and what keeps me sane.
I want people to read, to LIVE what it is to have so many of your choices determined for you, and to see that ultimately that isn’t the important part. TRYING is the important part, if you have even the energy to try (which many of us do not).
I still think fiction is the BEST way to get into the hearts and minds of those who read, and that all the rest of the stuff just causes people to reinforce their walls (unless it affects them personally, and then it’s often too late because they don’t have the energy to do anything or help).
EVERYTHING someone like us does, using up our precious energy, is important. We are working hard not to go quietly. Eventually, our generation of people who are ill with ME/CFS will be the last.
I think with CFS people are always challenged as to weather they are sick or that maybe they just don’t have any drive or ambition or are not able to shrug off all the daily aches and pains normal people go through. It’s so insulting when people imply this, I just want to shove it in their face how full of themselves they are. But I have no evidence to support my position cfs is a disability, not a normal ache, not a normal pain. Cause CFS is not recognized by science and there is nothing, no evidence I can point to to prove any different.
On the other hand if I had Parkinson’s I would be lavished with sympathy and respect. I wouldn’t have anything to prove.
Hey Robert. I agree. We really need a diagnostic test. I think it’s going to happen. Thanks for reading!
Thank you so much for sharing- it’s a beautiful article that can help everyone shift perspective. It’s so easy to forget our bigger values in life. I’m going to go give my son a big hug!
Hey! Wonderful. That’s the kind of thing I love to hear. I’m gonna hug my family members too!
My son is getting married this month and he lives really far away. I packed my bag and was determined to go but then I began to realize and remember that I can’t physically do it because of this evil illness. It just completely breaks my heart in two. I can hardly get my meals or take a bath. What was I thinking?? He lives at altitude also and I haven’t been there since I got sick 11 years ago so not even sure what that would do to me. I feel like such a failure as a mother right now. As badly as I want to be there, I don’t want to fall out in front of all his friends and other family members. (If I even got that far). This doesn’t really relate to your article except that I guess sometimes even if you may not be dying right now you just feel like you are and that the really important stuff you want to do is just impossible. Such a frustrating illness that makes no sense. I do hope someone can find a cure for us all someday.
Hey Gloria. Me too. I hope the cure comes. It’s out there. I know it. In the meantime we’re at the mercy of the illness.
Thanks. You are right about us being at the mercy of this illness! Keep writing and keep hoping for better days. 🙂
Do what you choose. None of us know our time table. You don’t have to have a terminal disease to know time is precious. You have to live like tomorrow’s coming, now what can I do to help myself or help others? You might read the article written in the new AARP magazine about Michael J. Fox and his bout with Parkinson’s Disease. Very uplifting!
Hey. Thanks for the suggestion. I would love to read that. It’s funny you mention him, when I first got sick I kept my spirits up by reading his two memoirs. Have you read them?
One, just have always liked him. Not your typical actor personality which is proven now
One, just have always liked him. Not your typical actor personality which is proven now. The AARP article is available online.
Jamison, maybe your purpose is not the one you wanted, but here you are doing what you can do and getting the WORD published. THAT is huge and I so thank you for it.
Thanks Pat! I appreciate you so much!
One with spirit gave you a gift Jamison, a gift of his precious time. A gift that made you and all the rest of us think, what if that was us. None of us unless faced with death can say how we would feel we can only imagine what we would do or how we would feel.
One with spirit really has spirit, he has made each one of us realise just how fortunate we are and that we should be grateful for our lives even with standing illnesses because we have the gift of life.
Had you not lived with your illness you would have never gone on to educate and help others facing the same. You were a body builder, you had strength of body. Now, even if you don’t realise it yet, you now have a much stronger strength of mind which will carry you through your life.
Smile Jamison because you have the gift of life 🌹even if it has been pushed in another direction 😉
You’re so right. Life is life, no matter how crappy it is. I try to remind myself of this. Even if it’s a crappy day, I can usually find some enjoyment in something. Thanks for your encouragement!
Precious reminder for us all…thank you.
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Thank you for reading it!
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Thanks for this Jamison. You are a gem. Thinking of my own mortality AS WELL as my loved ones (because I can get so caught up in my own illness with a sort of self importance ((as I’m daily struggling))) I have lately started to open up my eyes to everyone around me ,especially my parents,who I just moved home with. I can get mad at them for not giving me the silence or space I think I ‘need’, or for being ‘too much’ but it’s such a tiny, worthless use of my own energy, to be mad, as who knows how many days I or anyone else has left?? Today I will use this as I go about my day. Sending love and gratitude for your wisdom and fearlessness in posting such topics.
Hi Shoshana. That’s a re good point. There’s not much use in being mad when you factor in how much time we have. That is, unless anger serves you. I think sometimes it serves me, but only when I have the strength to throw my sunglasses against the wall. Haha. Thanks for your kind words!
I’m not dying any time soon. With that said, I’ve had a few “almosts.” I was diagnosed with kidney disease from lupus in 2005 and decided (with at the time hubby, now ex) to try for a baby before going on meds. The pregnancy was horrible, 90+ lbs of fluid built up, including on my brain, almost stroked, on bed rest at 26 weeks, delivered via c-section at 28 weeks and was released from the hospital 9 days after giving birth. My daughter was in the NICU for 55 days. There was also the time I got sepsis and was in ICU for weeks, the time I had acute renal failure, all the times I just physically couldn’t move my body without excruciating pain, etc… you get my point. 😉 Each time is a long recovery time and each time I am close to remission towards the end but because I am so stubborn in wanting to experience life and all it has to offer as much as I can, I never wait until I am fully well, go in head first and come back weaker. I’m not going to lie, it is worth it every time. I have finally this year beat my pattern of going into the hospital 3+ times per year. I talk about lupus and educate, but the approach I go for is more on a sarcastic level. If I am too straight forward, cut and dry, the facts of lupus and my 2 kinds of kidney disease, depression sets in. I battle within my head daily and need to keep things as positive as possible because the mental struggle is by far the worst part of everything. So, for instance, I have a malar face rash. Wonderful! It is my natural blush that I can blend with my foundation and use it to my advantage. I’m extremely anemic right now and live in Florida. I am loving being anemic in summer because while it is 1000 degrees and everyone around me is dying of heat stroke, I’m all over here huddled in my heating blanket in the house. Things like that. When I feel well, I go go go. I want to be able to look back at all the fun I have had during those times I am trapped in bed or in a hospital and tell myself it was worth it. I’ve been on disability since 2009.😊
Hi Lissa. I’m so sorry that sounds awful!
That’s exactly the main question to ask every day to live a conscious life. Thanks for the reminder:-)
My pleasure, thanks for reading!
Loved this article. I have two chronic illnesses, one of them is Crohn’s disease. And the main gifts I have receive from this miracle is being able to withdraw the need of the “following period of time in my life”. I just appreciate the present, allowing it to shower me with the simplicity of everyday things.
I also know that with my illness I’m not able to predict a long or short term death or quality of life. In fact last week I had a really dangerous episode of hypotension and I actually almost die…. I found that I already had the answer to that question: if I would die today I feel like I’ve lived to the best of my abilities and loved as much as I can. I understood that I had been building a present that is full of revelation and complete communion with life as it comes.
So if I was dying… I will just continue to live this way. Aware of my infinite and undeserved gifts…
Hi. That’s a really point. I think for the most part we are all living the best life we can and it wouldn’t really change if we were dying. Maybe little things would be different, or the occasional skydive haha.
Hahaha! Well. I’m not sure if everyone is living the best as they can… I was certainly not doing so before I got sick 🙂
But for sure there could be a couple of nice or crazy things one would want to do when using that time 🙂
Ah true, my optimism gets the best of me sometimes.
“That said, my health as it stands is enough that I can do both. It currently allows for both time and energy to be used for writing articles that raise awareness for MECFS and spending time with people I love. Yes, it often wrecks my body with pain and weakness, but it’s so worth it” – Thanks Jamison! So glad you put yourself out there. It is meaningful work and treasured by many!