Turning Straw Into Gold

Life through a Buddhist lens

How Chronic Pain and Illness Fan the Flames of Uncertainty

No one is immune from life’s uncertainty. But for the chronically ill—which includes those who suffer from chronic pain—it can feel as if the number of life factors subject to uncertainty has multiplied geometrically. Indeed, perhaps the hardest thing about being chronically ill is the uncertainty it brings to almost every aspect of life. Read More

You hit the nail on the head - six times!

All I can say is that these are probably the six biggest issues that plague me on a daily basis. And yes, it's work just to balance these feelings/emotions/fears every moment of the day, keeping track of ones thinking. What I understand intellectually and what every fiber of my being wants me to "feel" can be very different thins indeed.
Recently I had an experience with my husband (somewhat similar yet in a lesser degree) in which future uncertainty sent me reeling. He was working from home and all of a sudden could not see. My husband, who handles everything with the utmost calm, was shook to the core - and I could tell. The situation turned out to be a very benign diabetic issue and quickly resolved. But for about an hour I was so physically frightened that I had to keep laying down because I thought I was going to pass out. Once we found out everything was ok and he was restored to health, I broke down and sobbed uncontrollably with the realization of how dependent I was on him. Wow....I had no idea. But it was a good lesson to start thinking about these things - the what if's - without becoming preoccupied with fear.
So much work!
Thank you for another wonderful post Toni. It's beyond comforting to know others struggle with the same issues. Other strong, intelligent, grown-up ;-) people! Be well, my friend. Even if that's a lesser degree of sickness today!

uncertainty

Hi
Very good article my dear.

You've described my life everyday.
With wet eyes I kept reading this.

Sometimes, its hard to read what I go through.
I know that I'm not alone by no means.

thank you for your words.
Monica

As usual, you expressed

As usual, you expressed perfectly what those of us with chronic illness live with day-to-day. My #1 fear is money -- I'm unable to work and without a spouse or partner for back-up. My three college-age sons are far from being financially independent, especially in this day and age. Though I'm aware that worrying about money is an ineffective and detrimental exercise, how can I not?

running out of money

There must be groups for people with your ailment where you could meet friends in a chat group and then bring up this subject. Maybe there is someone else who lives alone or 2 someone elses with whom you could split the cost of an apt. or small house. Depending on your ailment, perhaps there is someone who would like to take on a roommate just as a companion. Get creative. Perhaps your doctor or pastor would know someone who could split some costs by living 2 for 1. I'm assuming you've already thought of relatives. Good luck.

Hi Beth, I completely relate.

Hi Beth,
I completely relate. It's such a big one isn't it. As it's the only thing I see that I *can* do, I've been dabbling in some law of attraction/abundance work - such as gratitude for what I do have. I figure it can't hurt and it just might work!! And learning about anything, including esoteric belief systems, is interesting to me.
Of course I also succumb to worry at times (as well as envy - ouch!).
Wishing you good fortune. X

Theresa, Anonymous, and Beth

Thank you for reading my article and for your astute comments. I think they'll help others.

My best to all of you,
Toni

uncertainty

i read your article with great interest. my illness is more of the terminal nature so there are some differences. i was particularly touched by the situation with your husband. a couple of years ago my husband went in to a-fib and we ended up at the hospital all night. it was torture. he assured me i could leave but after all he has done for me i just couldn't.

as far as the uncertainty i have been in a vocation that taught me at an early age of just how uncertain life is and it made this journey that much easier.

knowing someone else is going through the same thing can be very helpful. thank you for sharing your insights

The Uncertainty

As others have said, you have hit it on the head, six times. All of these concerns are mine, too...every day. I have fibromyalgia and Pain is my constant companion. My husband is also disabled; his is a mental disease, bipolar. We joke that between us, we are a whole person. Our strengths and weaknesses mesh together and coordinate so that we can take care of each other. For now.
The phrase that has become our mantra is this: we live every day within the reality of our disabilities. No apologies for any inability to function "normally", at any point in the day. We have chosen our clothing, furniture--indeed, all of the necessary items for living with an eye towards that reality of our disability. I love to cook, and in fact was in the process of establishing a new career as a caterer/professional chef when I became too ill to even cook a simple meal for me, let alone a large, elaborate meal for a group. Among the other things I used to do, not being able to cook what I want, when I want...is a source of sorrow. My dearest love has made a point of buying kitchen items for me that ease the work of cooking and allows me some joy. I have wonderful appliances (Vitamix blender, Breville convection oven and breadmaker) that are easy to use and easy to clean. I have utensils that are comfortable to hold and the pans I use are not so heavy that I cannot manage them. It's become a challenge, to do the "gourmet" cooking within the confines of my disability. He is currently researching and planning on buying a tractor seat stool that will adjust in height and rolls--so that both of us can be able to stay in the kitchen for the amount of time needed to make a meal. (We neither one can stand for long--my time limit is about 20 minutes)
Bur even having all of this does not mean that I can just go cook whenever I want to, or it's mealtime and I need to. I still have days where the pain is great enough, even with medication, that I am nauseous. Cook? No thanks.
Now I will tell you, my comrades in this new life of limitations and pain, that the reality of my disability is a hard thing for me. You know, the anger, the depression, the sense of unfairness. I have been the Mom, the leader, the one who "gets things done" and now I can't even work up the strength to shower regularly. Sigh. BUT...I do have time. (Amusing side note: when I first met my husband, we were both still "healthy" and holding a job. We often wished that we could have more time together because work interfered in our being with each other. Well, we got what we wished for. In fact, our wedding bands are engraved on the outside with "BCWYWF" -"Be Careful What You Wish For".)
In my blog, one of my first postings is called "The Zen of Fibromyalgia" and I explore all the positive aspects of this disease. I have time to meditate; time to listen to others who need to talk about their pains (I am a minister; this is not a new activity for me, but I do have LOTS more time to do it).
I have a disability. I am NOT my disability. Like a very demanding pet, this disability has to be taken care of, catered to, pampered and addressed every moment of the day. It cannot be ignored. So I choose to use it as a way to accomplish things I would not otherwise be able to, without all this time I have been given.
Dealing with the uncertainties is a part of that...and I adhere to the Zen Buddhist mindset, that today, this moment is all that we can sure of--everything else is variable and changeable. The fibro definitely limits me, but it doesn't define the sacred being I am, within this vehicle of a human body.
I will close this wall of text with a quote from Hugh Prather, from his book, "The Little Book of Letting Go"(Available at Amazon, for the Kindle)--"Make your state of mind more important that what you are doing." And happiness is a state of mind.
Blessings, Peace and Namaste!

Blake and Kate

Thank you so much for your comments. They'll be very helpful to readers of this post and I appreciate your taking the time to share your thoughts with all of us.

Warmest good wishes,
Toni

My fav column so far

Yes, this does go to the heart of the matter, uncertainty. On top of ten years of nerve pain in the face, head, and neck, I have had Crohn's disease for 41 yrs. Now there's a disease that put the C in uncertainty. You can't venture very far from home before you no longer have access to your bathroom or any bathroom that you know of. And this year, at the age of 66, I am having to deal with the uncertainty of my memory, which for now I am hoping is from the medications I take because to think anything else is just too terrible and terrifying.

The only thing I add to uncertainty is lack of self-confidence. We see people with all kinds of disabilities doing amazing things in the special olympics. Good for them, truly. Bad for me as everyday I have to decide if I am being brave, courageous, and strong enough to make the people in my family proud of me as well as me proud of me.

Quite frankly, ugh to the whole thing at times! Other times, I've made it through one more day with a modicum of joy and gratitude. Thank goodness I love to read and surf the wonderful web.

Thanks Nina

I'm so glad that you liked the piece and I appreciate your addition of "lack of self-confidence." I think that will be helpful to others, so thank you.

And yes, ugh to the whole thing at times. I talk about that a lot in my book "How to Be Sick" and even more in my new book -- how some days just don't go well, but we just pick ourselves up and start over again -- again and again!

With all warm wishes,
Toni

medical procedures and chronic illness

Hi Toni, I related to all of these, especially #5 and #6. I have never had a doctor understand or validate me when I've said that I won't get a colonoscopy because the prep will cause me to be sick for days- maybe weeks. Fortunately, I don't have a family history of colon cancer and no pressing reasons for me to get a colonoscopy.

I also worry a lot about what will happen if my partner gets sick/disabled. I do not have kids or any family. There are some things I cannot plan for. I have faith that if that should happen I will figure something out.

Spring is finally arriving in northern New England even though there is still lots of snow around. It's been a rough few months for a lot of people. Every minute of every day I try to think of all those who are suffering and I am aware of my many blessings.

Nemaste,
Susan Kahn

Thanks so much Susan

Thanks for your comments. I'm so glad so much of this resonated with you. I hope spring brings loveliness into your life.

Warmest wishes,
Toni

Progressive Attitudes

Whatever the kind of chronic illness is,a progressive attitude should be followed, First, don't think profoundly of what you feel.Second, don't concentrate on what you feel forgetting others' pains. Third, others may suffer severely more than you do.Fourth, have faith and hope that you will be better one day. Fifth, don't lose hope for a higher power stronger than medicines and doctors can gift recovery, healing and enjoyment of life.

Progressive attitudes

Gerges, I suspect you mean well, but please don't 'should' on me. For years I was able to manage things with a progressive or positive attitude. Not any more. I am grief stricken and angry, and I struggle to not feel guilty that the 'wonder woman' in me has died. As for number three, again, that is a guilt-inducing comment. It has been used by others in our lives to minimize the reality of our situation. Just because someone else suffers more than I do, doesn't alleviate my pain. My pain is real

Excellent subject!

Like the others here, I agree that you hit the nail on the head with this post!! I can relate to every single topic! One question popped into my head while reading #4 About how much help to ask for. I know people have the best of intentions, but for me at least, asking for help is tough. I am 43 years old and still manage to live alone, but I rely on my mom for nearly everything (driving, shopping, cleaning, etc).

So my question is how do you handle the well-meaning people who say "If you need anything, let me know"? Do they really mean it? And how long is the offer "good for"? - a week, a month, longer? Is asking for a ride to the doctor too much of an imposition? Ugh I never know!!! I often wish someone would just call and say "I'm heading to the grocery store, do you need anything?" Or maybe show up with a bowl of soup for dinner. Just wondering if I'm the only one who struggles with this uncertainty?

The gift of awareness

As usual, you’ve done a great job of articulating my experience. This column would have been worthwhile reading if just for #1.

The funny thing is that EVERYONE’S life is uncertain. No one knows when they wake up what the day may bring. They may become sick. Something may happen that will leave them bedridden for life. A profoundly life-altering experience may occur at any moment. It’s just that being healthy makes it easy to deny this reality. The variability of chronic illness simply forces us to confront the uncertainty of life. We can’t turn away from it for the sake of false comfort, because we live with it daily.

Even though uncertainty can be uncomfortable, perhaps we are the fortunate ones, to have been forced to learn to accommodate this uncomfortable reality. Being aware of the uncertainty of life certainly gives you a different perspective. I think it helps you to appreciate what you have and not take anything for granted.

Thank you everyone

I've read everyone's comments carefully. I wish I could respond to each of you individually, but I wanted to thank you all for sharing your reactions with others. I think they'll find them helpful. I do think that the comment from Gerges risks our feeling negatively judged is we're not always thinking positively. I like to call that the tyranny of positive thinking. All of us hear are doing our best to cope with a very difficult situation.

With warmest wishes to all,
Toni

the tyranny of positive thinking

I love "the tyranny of positive thinking" phrase. I always called it "the emperor has no clothes thinking" because instead of going along with the pollyanna-ish crowd, one should not be afraid to tell something as it is or at least as one sees it. But I like the tyranny of positive thinking better.

I'd just change one word

I'm another with chronic illness who agrees totally with the article. I've also been made grateful that I generally can sit longer than 2 hours though that depends on the chair. I would change one word at the beginning of the article. Instead of saying "the number of life factors subject to uncertainty has multiplied geometrically", I'd say they increase exponentially!

Thanks Nann!

I agree that your phrase is better and I just edited the piece!

With gratitude,
Toni

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Toni Bernhard, J.D., is a former law professor at University of California at Davis. She wrote the award-winning How to Be Sick and, recently, How to Wake Up.

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