Good god, A New Diagnosis
Old Age Word Play

A Change Of Scene

By Carole Leskin

"What you really need is a change of scene", I said aloud to myself.

There was nothing new in those words. I have said them many times over the years. For the most part, during tough times. Divorce, an unhappy relationship, business difficulties, failures of one type or another. Occasionally, out of boredom - that feeling of being stuck.

And usually, it meant taking a trip. A weekend or sometimes much longer. Always someplace different. A chance to see a new view. Meet new people. Eat new food. Try new activities. There was always a sense of adventure. No real plan. Letting life unfold in whatever way.

For the most part, it worked. It was, after all, my adult version of a child running away from home.

But this time it was different.

This time, wherever I went I took "me" with me. There was no escape.

The reality is I am a 73 year old woman who recently had a stroke. My degenerative disc disease and neurological disorder have progressed and become more serious. My physical being is entirely different. My personal freedom significantly limited.

Adventure? My bucket list - zip lining, more hiking, travel to far away destinations, going cross-country in an RV and more - not going to happen.

How can I change my scene?

I am tired and annoyed, sometimes even angry at people, often well-meaning, who hardly know me and send me inspirational posters and quotes.

They remind me that it is all a question of "attitude". "Never say never! Buck up! Stop wallowing in self-pity. So many people have it much worse."

There is a lot of truth in what they say. I count my blessings every day. I have good medical care, a cozy apartment, access to classes and special events. Friends. I love to write and take photographs.

But here's what they don't understand. Sometimes, actually often, it takes a strong will just to get out of bed. Daily chores, things I used to do in a few minutes, take hours and are exhausting. Pain is a constant companion. Doctor appointments, tests, medications, complications.

And what is worse is FEAR. What if I have another stroke? What will I do when I can no longer walk? How will I manage? I have no family and live alone without a support system.

Suddenly, I realized what will change my scene.

A lot of people won't like it.

I will grant myself time to be dark for a bit. I will not feel as if I always have to smile. I will not feel I have to pretend to be optimistic when I get bad news. If I am grouchy - so be it! If I am sad - I can cry. If I am scared - it's okay. In other words, I will allow myself to be me - in all my dimensions.

Most important, I will reach out for help. Something I never do. My whole life has been one of independence and pride. I have to let that go.

I will continue to love writing and photography, nature, animals, learning new things, and meeting new people. I will love my friends and treasure their support. I will be grateful every day.

I will do all of this and more. But I will do it without pretending my declining health and related issues will all go away. I will look at my life from a different perspective and plan accordingly. I will make necessary changes and adjustments.

I will take all the pleasure I can from my change of scene. I will be me. Good, bad, happy, sad.

It's all part of my new view.

* * *

[EDITORIAL NOTE: Reader's stories are welcome. If you have not published here or not recently, please read submission instructions. Only one story per email.]



Comments

LOVE this! With your spirit and curiosity topped with a 'don't give a *%@(' attitude, you're going to do just fine.

It takes strength to look clearly at your own life and what the landscape now determines is your life, including the wants and desires.

This was a terrific read and offered me to imagine your reality as my own, which could be the case some day.

Agree 100%.

I can empathize with your reality. If staying in bed wasn't more painful than getting up I fear I would do just that some days. By accepting your reality you have adjusted to it well and your new view is the right way to go. Asking for help and making necessary adjustments are vital to accepting 'what is'.

We can no longer escape the difficulties we face by taking trips or doing other physical activities; so we soldier on in these old bodies that no longer work right. And there are times when we go dark, as you said, and wonder if it's worth the fight.

Although my daughter lives with me and I am not alone, she has her own physical limitations and there are times when she is unable to help me. I wonder what I will do if my bad hip finally refuses to hold me. Affordable help for the disabled is missing in our society.

In my case, staying on beyond my shelf life expiration date is getting more difficult and I think there is a niche that is unfulfilled in our medical system and should be addressed. Nursing homes are underpaid, poorly run and end up being waiting rooms for the grim reaper (not McConnell). Maybe the Eskimos have it right when they sit on the ice floe when they are no longer of use.

Aren't I the cheerful one? Apologies for a downer comment, but I think the subject of those living alone when needing daily help is one that needs to be seriously studied.

The change of scene metaphor illuminates this piece. I found it compelling and believable- not a cure but a shift in perspective that sounds hopeful. Perhaps you can write a follow up, Carole. It would be good to know how the change plays out in your life. Thank you for writing this.

Good for you. Some days I just don't get up really at all. Stay in bed and read and nap. It usually makes me feel better. Some days the reality of our health/situation is and it takes some crying and being angry to move past it for me. I am so grateful for my pragmatic family who is sympathetic but good at adjusting to reality. I try not to think about what realities await. There's no more preparing I can do.

Good piece, Carole, as always. It's all about reaping the beauty and energy out of the moments we have. There's so much room for improvement and affordable options in this society for people who live alone. This is the biggest worry for me and many of my friends.

Good for you! It is, as the kids say, what it is.

I, too, have always found pressure to be "cheerful" and "inspirational" oppressive. The dark side of all that positive thinking is mainly to convince others that whatever awful thing you're struggling with will NEVER, EVER happen to them! And even if it does, it won't be "that bad."

Meanwhile, I'd feel more alone than ever. Thanks to the internet, we at least know that we're not.

I resonate with these feelings. Our situations are different, yet I feel the world becoming smaller, and less available to me. I often think that there is a crucial developmental task in old age: Accepting the new shrinking normal, and adjusting with lower, yet realistic, expectations. The grief associated with this adjustment is too often overlooked. You bring it clearly to light in an engaging reflection, that acknowledges the situation and the grief. Please keep writing and sharing your thoughts.

Thank you.

Yes, yes, yes! That shift of perspective is hard to make and hard to hold on to but once it is recognized and made, is well worth the effort. Thank you for the reminder (sometimes, I slip).
o/

Yes, thank you! I admire your choice to be authentic, which seems so hard to be in our society, at least until we are older. Other than Ronni and these comments, many of us are reluctant to put our real thoughts and feelings out there and make ourselves vulnerable.

Your article helps me better understand my husband's health situation and his reaction to it. He also has degenerative disc disease along with a myriad of other issues, spinal and more. At almost age 75, he is literally in bed at least 18 hours a day and "can't do much" because of leg weakness and pain to the point of incapacity. He doesn't communicate much so as not to "complain".

Best wishes to you. And to Ronni and my fellow readers.

Do it your way, Ronni! I support you in that💐💐💐

I SO agree. Pollyanna I'm not, especially about old age (as anyone who's read my comments over the past couple of years may have discerned). There's really not all that much to like about old age, but especially the inability to do basic tasks we've done all our lives or--if we can still do them at all--the extra time and energy required.

I was always a high-energy, involved, active (though not terribly athletic) person but now not so much. It's surprising what limitations ongoing physical pain can impose on one's life. I'm appreciative of what I still have but can definitely relate to the fear of losing it. I'm very fortunate to still have my wonderful husband, who will turn 90 in November, and our two senior cats. Neither of us has a "killer" disease or dementia (yet). We have adequate basic financial resources but far from enough to pay for more than a 2-3 years of long term care--even if we can continue to pay the rising premiums on the insurance we bought many years ago.

My world IS smaller and less available and I don't like that. But it is what it is. . .I've always advocated being able to designate the time, place and means of my own demise. I still do.

YES! Why are we supposed to be so cheerful all the time? Even with several close friends I am afraid to tell the truth, for fear they will see me (and I think they will) as a complaining old bore. My life is good, I know that. But like you, Carole, I am alone in the world (how I hate the term "elder orphan!") and it's sometimes very scary indeed. Lately I've been thinking about seeing a therapist, so that I could hear myself speak the truth about my situation. But that's expensive and at a distance. So, having read about the Nu Shu writers of China, women who wrote in secret code to each other, speaking their sorrows, I've decided to write the truth in my art journals when need be, and the hell with whoever reads them when I'm gone! Even for my own sake, I don't want to be negative, a complainer, etc, but I also don't want to be phony.

Well put Carole!

Yes, fear and pain....I know them both. It helps to know I am not alone. Thanks, everyone, for sharing here.

Yes, Yes, YES! Totally agree with all of the above and, as also said above, our society really needs to address this issue.

Carole Leskin thank you for writing this. Much of what you said is my reality too...except I've not had a stroke and I still work and I'm a year younger but the other stuff? Mine too. It sucks. And if one more person says to me, when I kvetch about how I feel, "well it beats the alternative" .. the withering look or the "how do you knows?" will take care of it.
Your attitude appears to be much more positive than I can some days muster.

Your reality shared is a gift to us. My joy is sending cards to others.. a gift I inherited from a cousin of my mom's, long gone, who had her list of 'shut-ins' handy to always find a way to send notes to them. IF I can do for others, my being is better. If I can have quiet, peace, time to read w/o interruption, it is better.

Find some beauty as you noted.. those 'changes of scene' that are right there. Here's to you for being and saying.

Fully understand, feel some what like I am walking in your shoes except I have a husband that is either senile or dementia. One in the same as far as I'm concerned.

Thank you for this one, Carole! You seem to be reading my, and others, mind. I was slowly but surely heading in this direction. A million thanks for giving me the reassurance that I needed that I was not alone in this thinking! It's not giving up ... it's giving in to deep and mostly hidden feelings. Now I can let them out and the relief from that pressure that was growing by the day is allowed out into the fresh air. Now I can mull over and appreciate what ALL my real choices are in comfort!

Thank you, Carole! This is such a timely message. I, too, have felt the pressure to "cheer up," be smiling, and positive ALL the time. I can muster it up sometimes, but why do we have to? , When I tried to share some of this with my writing group, they were dismayed. I have not done that again.
You are showing so much courage. Good luck as you go on doing things your way.

Life is all about change. Once we accept that, and it's so hard, outlook changes too. I attended some workshops on chronic disease and they really, really helped me to focus on what I could do now rather than all the stuff I used to do.

Week after week we shared and applauded our tiny accomplishments like getting out of bed and walking 20 steps without the cane.

I am glad you wrote about this. As being this awful phony cheerful person is not who I am either. I grant myself a few minutes to whinge and whine every day.

Best of good luck on your journey ahead.

XO
WWW

There are so many brave, wise voices here. I am very moved by what you said Carole, and then by the comments. It's too bad all these conversations can't be published and be forced reading by all health care professionals.

It really is hard to find someone evolved enough to be able to sit with us in our despair and anger, but they are out there. You just have to keep telling the truth.

Yes! Yes! Yes! Thank you Carol for sharing this. As Joan said above, " your reality shared is a gift to us." And this blog, and the comments are our tribe who can hear and share this message! So important - so comforting!

Carole, your writing is crisp, sharp and no holds barred.

You're describing the cold hard truth about your life right now.

It's not a movie- it's your new reality.

You're kicking it's ass by making some changes.

Thank you for being your authentic self.

Respect.

*Keep on writing.*

This post was excellent, Carole. I can’t ad anymore that the terrific comments that have come before me. Such a relief to know others feel as I do, especially about the unnecessary pressure to feel you have to fake it and be all cheery all the time.

I actually like the part of getting older and becoming who you were meant to be and finally knowing who you are and what you believe in all the many facets in our lives.

But the eventual health issues will be there and will be dealt with in the manner we feel best for us and that’s all that matters.

I so agree with Elizabeth Rodgers that we should have the right to designate our own time of demise.

Wow. I read all the comments. Oh my. On the heels of finishing, Never Say Die by Susan Jacobs. Jacoby? It's in my car and I am too lazy to go get it or to look it up. Anyhow, reality looms and I hear it in everyone's posts. For those of us that have time there are lessons. One is don't be old and poor in America. I am a scant 68, so not ( ha! ha!) old. Perfect health and affluent. My heart aches for everyone who isn't. The Baby Boomer bulge is going to knock our healthcare system to it's knees. Our society is in denial and selfishness about how to best manage what is coming as sure as the sun rises. It's outrageous and disgusting. Europe does it better. But for those of us that are here, what to do? How to navigate what looms ahead? Reading and being aware helps. My heart aches...it's terrible to read how our medicare system is designed. My brother lives in Germany. My daughter in is Swiss...they don't have these worries. America is the land of the rich, greedy and all of those that have bought into what is being sold. Guess again, old age comes with a big bite. Harsh...hard to be optimistic. I am not. Personally, I will be ok. Sadly, many won't. Thanks always for this blog that teaches us about what is coming and how to deal with it with grace and dignity and wide open eyes.

Karin

I just love your essay. It's raw and honest. And hopeful!

TO Everyone Who Has Written Comments So Far and Those Who May Do So Later... Thank you from the bottom of my heart. What you have shared has made me feel less alone than I have in a long time. To hear all of you voice openly and honestly your challenges, fears and decisions has opened my mind and made me more determined than ever to continue my writing and photography, not hesitate to say when I am feeling terrible, be kinder to myself when it happens, do everything I can to manage my illness and celebrate those moments when I am well. You have given me an unexpected gift!

I was never very good at “playing the glad game” which began with Polyanna and has become a virtual internet meme. People who don’t look on the bright side are seen as taking everybody down with them. But those of us who tried to optimistically age and then found that aging was difficult and painful have mostly lost the ability to fake it.

Unfortunately, these days I am in the throes of survivor’s guilt because various much younger member of my family are encountering worse health and money problems than mine. These are hard times, socially, economically and politically. I at least have enough money to help me cope with whatever comes, and even enough to provide some assistance to others. So, although my instinct is to gripe and grouse, I don’t dare give in to it. The people I love need to believe that I am just fine.

But oh my god, I will be so “glad” if and when everyone pulls through and I can finally let it all hang out. This cheerful optimism thing is seriously getting me down.

Emma Jay, I was always terrible at "the glad game" too! That said, I hope your family members get through their bad times and emerge relatively unscathed.

Like you, I'm appreciative of being more or less O.K. financially--that is, as long as neither of us lives too much longer or becomes seriously disabled. For the "action" person that I once was, it's scary to contemplate that we really can't do much of anything about it at this stage in our lives.

However, like many other commenters, I feel less alone after realizing that I'm not, for which I thank Carole Leskin and all the commenters.

I'm in solid agreement and similar mindset with Emma Jay and Elizabeth Rogers.

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