Hello.
I couldn't let November pass without writing here at least once more. The time I took was necessary, and I realized I couldn't pretend that everything was okay, normal, fine, or as it ever was. Writing the list posts felt like I was lying to myself and you; like I was putting on a fake persona. It was stressful.
It's been difficult to adapt to life with this illness. I can't drive because it hurts and it wears me out, and my legs cannot always reliably react, so it's a safety issue. I haven't taken a real walk since July. I also have carpal tunnel syndrome in both wrists, so I wear braces when I sleep. I do not vacuum, nor can I carry or lift much of anything because of muscle fatigue and weakness. There is also brain fog, so reading is very difficult because of concentration issues, and I keep reminding myself--out loud, often--of what I need to do. And always, I am so very tired.
Still, I have learned how to cope. I have learned how to rest without feeling guilty, how to ask for help, and how to take advantage of times when I do have energy, but not to overdo it. It's a very, very fine line, and not always the same each day. I am also trying desperately to learn not to sit or sleep with my legs all drawn up or crossed because it affects my nerves/neuropathy. This is almost impossible (as a matter of fact, I am sitting incorrectly right now, damn it).
In spite of all of this, I am in a much better place now than I was two weeks ago. I was, unfortunately, falling back into old habits and fighting hard, thinking I could change things merely by force of my will. That's behaviour that I worked hard to unlearn years ago. I had to find out the hard way--again--that it's not the way things work.
The New York Times recently ran an article titled What You're Thankful For: Six-Word Stories of Gratitude. In it, the writer shared what readers sent in when he asked them for six words that described what made them thankful in 2025. Of course there were the usual ones about family and friends and grandchildren and pets. Others were about partners and anniversaries and health and nature. One, however, immediately stopped me. It brought tears to my eyes and I almost couldn't breathe. It said:
It won't always be like this.
The impact of this one sentence is enormous. While I know that my illness has no meaningful treatment or cure, I will get better at living with it each day. I will get better at Acceptance each day. I will understand my limits and my abilities better each day.
Another facet of this sentence is that, right now, I have my whole family right here with me. Sam is only five blocks away. Jared, Jordan, and Theo are less than an hour away. Rick is here with me and such a great partner. Who knows what the future could bring? I need to stay in the moment and enjoy every single minute that I can. I see how quickly things can change; I'm living it.
Finally, I have to believe that this applies to our politics as well. I've no energy or stomach to work up a Nance Rant like I used to, but even the worst of the republicans are proving to have a gag reflex. Read this poem by Yeats and you'll see how I feel. It's like deja vu. Or, to be more blunt and au courant, I'll quote rapper MGK: "You need the arc of dumbass to enlightened."
In the case of America, some of us apparently need it twice. I refuse to take any responsibility for either time.
Thank you again for all of your kindness and support. It has meant everything to me. And thank you for writing over at your places. Reading you makes my day.
Oh Nance. I hate that you are going through such a terrible time. Chronic illnesses are really a punch to the gut. There’s not cure and nothing is linear - it’s 1 step forward and 2 steps back. And some are harder to control that others. This disease has robbed you of a feeling of normalcy. And no amount of gritting our teeth and powering through symptoms will undue the damage that is done. I have gotten better at resting and listening to my body but it feels very counter cultural to do so and sometimes I feel like I need to explain to people that I nap and prioritize sleep because I have a chronic illness. Which is silly because why are we so obsessed with ‘doing’? After all, we are human BEINGS, not human DOINGS. And yet being and resting is kind of viewed as lazy (at least that is the internal judgment I have to tamp down).
ReplyDeleteI am glad you have Rick and your family close by. And while I imagine your pain and symptoms make it harder to get down and play with Theo, you’ll be a gentle presence in his life and slowing down will help you really appreciate each stage he is in. My mom is an amazing grandma but us siblings joke that there is always a salad to make or something to do in the kitchen. She rarely sits down aside from in the morning when she has her coffee and reads. My dad is not such a busy body and I think that’s part of why the kids are especially drawn to him. He has no where to go and no where to be and is content to sit on the couch and snuggle with them and let the world go by. He exudes peace. I know it’s hard to exude peace when you are in so much pain and discomfort but I hope your symptoms are better managed in the future so you can sit without pain and radiate in Theo’s discovery of the world!
Lisa--Thank you so much for this kind and very thoughtful comment. It's exactly what I needed to hear, and it's so insightful. But, of course it is, because you and I are travelling along the same sort of path. I so appreciate your thoughts here, and they have helped me to focus even more on the fact that I can continue to learn about how to manage this and still have a good life.
DeleteI especially want to thank you for your wisdom about Theo and our relationship going forward. I have been so worried about that, about being The Frail Nana, and you completely reframed it in a way that makes it positive and hopeful for me. You've given me a huge gift with your words, Lisa, and I am so, so grateful.
I was glad to hear this update, Nance. You are in my thoughts and every walk I take with Hannah, I take time to revel in the ability to do so. Here's to your time with your family. Enjoy every second you can!
ReplyDeleteEngie--Thank you for thinking of me. I know you have your own concerns, and I hope that your daily walks help with that. I always found mine so therapeutic. It's a great privilege to have my family close, and I never forget that.
DeleteThat's the one certainty Nance... "It won't always be this way"
ReplyDeleteSO happy that you are feeling like you are in an uplifted place and are learning to adapt and rest and ask for help--those things are difficult to do. I love how close and supportive your family is and I revel in knowing how much joy and delight all of them (and especially Theo) add to your day.
Even our politics seem to be on the ascent!
maya--Those have always been difficult things for me to do. I have a very independent nature and a wide stubborn streak. Taurus, you know.
DeleteYou know well the value of a close and nurturing family. We're alike in that--we thrive on taking care of them, and we sometimes feel a little lost when the roles are reversed. But it gives them a sense of happiness and purpose to be able to do the same for us. We need to remember that.
I hope you're doing better, too. I miss you at your spot, and I hope you'll be back there soon. XO
I appreciate the update, Nance. I’ve been thinking about you, and hoping things were ok. I’m glad you took the time to rest and that you feel like you’re in a better place. It won’t always be this way. Those are powerful words.
ReplyDeleteMG--Thank you, and thank you for thinking of me. As you know well, transitions and changes to our lives and health are difficult to navigate. I hope you're doing better, too.
DeleteI thought those six little words were huge, too; they hit me at just the right time.
Nance, I am so sorry about everything you're going through. I'm glad to hear you are in a better place now, mentally if not physically, and I'm very thankful you have a wonderful support system. You are a strong woman - I know you will make the best of whatever life hands you. When you said you felt like you were lying to yourself and to us, that hit home with me. You made me realize that I need to come clean soon, too, and stop blaming my total exhaustion on my grandkids. Unfortunately, I am suffering from many of the same symptoms you are. So when I say understand what you are going through, I really mean it. Big hugs!
ReplyDeleteMartha--Thank you. I am, and have always been, a strong woman, but that comes at a price. Be careful with that characterization--it becomes a lifestyle, an identity not just for yourself, but one that others can take for granted. It can be a trap.
DeleteI'm so sorry to hear that you need a trip to the doctor's office. Please get there asap. It's time to take care of yourself. Don't wait, Martha. And please, let me know. XO
I know just what you mean, Nance. I'm still playing the strong one, still helping when I should be asking for help instead. I'm a frequent flyer at the doctor's these days, sorry to cause any confusion with the way I phrased my comment. My health spiraled about six months after my husband passed away. One of the things I was diagnosed with is Peripheral Artery Disease. That's what has caused symptoms very similar to what you are dealing with. I was able to get some relief with surgery, but it's still painful and debilitating.
DeleteOh, Martha! I'm so sorry about your PAD. If you had mentioned it in your blog, I missed it; please forgive me.
DeleteIt's so unfortunate that you had to have surgery, but if it helped some, that's a positive. Please take good care of yourself and consider your health more when saying Yes to people. Remember the Oxygen Mask Analogy: You always put on your own mask before helping others.
I’m so glad to see you here, I have missed you. I am glad you are in a better place mentally, but GAH. I hope things turn around physically too. Living with RA has taught me to slow down and humor my body a lot more than I would like. Your words about thinking we can fight this, that it is part of our culture, ring so true. We cannot just muscle through, we cannot make ourselves healthy with a good attitude and by working hard. I hope I have never made anyone feel that I judged them in that way, but I can’t promise. Sigh.
ReplyDeleteJ--Oh, my friend. You're so right. The deep roots of our Puritan and Immigrant culture are always with us! Working hard and pushing through adversity will not help us with what we have. It runs so counter to our culture, right? Just like what Lisa said, above.
DeleteI cannot tell you how much your texts have meant to me throughout all this, and your postcards/card too. They are a constant reminder that I am not isolated; I have friends who think of me. You are a wonder and a treasure. XO
It takes a while to adjust to a chronic illness or disability. There's mourning period to go through before acceptance can happen and with the acceptance come the stage where you seem to b at---adjusting to what you can do to the best of your abilities and letting go of what you have to. Thanks for the update. I usually read your posts but I don't often comment. But please know I always enjoy whatever you write about.
ReplyDeleteJean--Thank you. Your analogy of a Mourning Period is so spot on. It's perfect. Of course you would understand, having gone through so much with your husband. It's exactly what I've been doing, but now I'm ready to move on and live.
Delete"It won't always be like this" is also like what I say, that I got from my friend Allison many years ago: "There will be a time after this." It really helps me stay in the moment and I am so proud that you too are staying in the moment and living with hope.
ReplyDeleteThat said! Nance! Your illness sounds really, really hard. Physically it sounds draining but I'm sure it is even more draining mentally and emotionally. I know you WANT to do a lot of things, but it sounds like you are up against a wall. It is HARD to ask for help, but you're doing it, and it's going to get easier to cope with as time goes by. That is not to say it doesn't suck because it does. But it won't always be so hard. Acceptance is the first step, I guess, and it sounds like you are getting there.
I can't say I understand because I do not live with a chronic condition, but I totally know what you mean by trying to change through force of will. Unfortunately, that doesn't always work, as you found out. I get that, though, it's a huge blow.
It won't always be like this! There will be a time after this. xo
Nicole--Thank you for your kind words and support. You're right that the emotional and mental fallout from this is the worst. As Jean said, above, I had to go through a mourning period before I could come out on the other side--The Time After This. And here I am.
DeleteI've always been a planner: I planned my high school courses with an eye toward college. I planned my college so I could graduate early before I ran out of money; I planned my wedding; I planned our budget so we could survive and scrape by; I planned my career and my retirement date; I planned each child. There was no plan for this. THERE WAS NO PLAN FOR THIS.
But here I am, relearning the stuff I already thought I knew from years ago in therapy: there is really only the illusion of control. (No kidding!)
I'm finding out the things that millions of other people with challenges already know. And I'm so grateful to have such a well of support. xo
It won't always be this way! But I'm sorry that it is this way now. Doggo and I are joining with Engie and Hannah on the Walks for Nance.
ReplyDeleteI'm so happy that you have your family with you right now! Thanksgiving is my favorite holiday for that reason.
Birchie--I am happy beyond words with the idea that you would think of me on a walk with your sweet pup. Walks for Nance sounds energizing! Thank you for thinking of me.
DeleteI am beyond grateful for my family. And I don't wait for a holiday to let them know, either.
Dearest, dearest Nance,
ReplyDeleteI have been popping over to the Department pretty much every day in case you wrote a few lines to update us. I figured it would be a while before you had either the mental or physical stamina to do so. Today’s post was very thought-provoking, especially for those of us who battle daily to adjust to chronic conditions and, basically, reinvent ourselves. Looking back over the years, as I often do these days, I think we spend our whole lives reinventing ourselves. The hard part, of course, is when the reinventing comes from absolute necessity and represents radical changes in our basic modus operandi.
This line really rings true for me also: “…thinking I could change things merely by force of my will.” That is something which I have also learned the hard way. What has helped me over the last few years is changing my “force of will” from wanting to return to a time that cannot be recaptured exactly as it was, or even at all for some things, and redirecting it towards coping mechanisms that help me to forge a new path. In your case, the new limitations on what you can do are incredibly challenging. It’s so much to cope with, especially since it affects literally everything you do on a daily basis. It’s not a question of “rolling with the punches” when you get hit by a sledgehammer. I am so glad that little by little, you are finding ways to cope, reinvent yourself, and that you have Rick to help you and the rest of your family support group close by. “It won’t always be like this” truly is profound.
On the political front: I think we are all getting a sense of the winds of change finally beginning to make a difference, albeit not as fast as we would like. The mechanisms that have been put in place over the last year are walls that we must tear down one at a time... with patience and persistence, because what has been happening has been in Der Führer’s revenge tour plans for years.
The poem by Yeats: Wow. I am still trying to process that, but I have decided to interpret the frightening ending as the phase we are in now and that, history being cyclic, we can once again rise from the ashes. It doesn’t always have to be like this. Having taught college students not that long ago, I have a lot of faith the current generation coming of age. Those kids may not have known cursive writing, but they sure knew where to dot the i.
XXOO
Ortizzle
Ortizzle--My dear friend of so many years now! You are so right when you say that we are, especially as we age, constantly finding ways to reinvent ourselves when needs must. Add in some curveballs due to health concerns, and developing new mindsets/coping mechanisms becomes paramount. You have had more than your share, I think, of the latter.
DeleteI think that we Women Of A Certain Age grew up feeling the pressure to achieve and succeed in the wake of the first wave of feminism. Add in the Puritan and Immigrant Work Ethic and Rosie the Riveter, and we were destined to bully our way through, roll up our sleeves, and wear hobnail high heels. That forged a lot of strong, tough women who thought that mentality would work everywhere and in everything. It almost did, but the costs do catch up eventually.
I agree that cracks are appearing in the red wall in DC. Let's hope that it's not so late that it leaves a terrible and lasting scar on our democracy. I honestly think that he just keeps going and going, waiting for the tipping point. If it doesn't come, he'll just keep flouting decency, truth, morality, and the law, daring anyone to stop him.
RE: the Yeats poem. It's intense, right? And so apt. I hope you're right about this generation; I don't have that same take. They were at every Gaza protest, but they've been conspicuously absent at No Kings rallies and other trump protests. It's our generation who've been out there to raise the awareness and alarm about this threat to democracy. Every single time. And their voting records are ... well, I won't say abysmal, but they're not great. I hope you're right and that they're ready to step up.
Thanks for always stopping by and looking out. You're the best.XOXO
Nance, I'm so happy to see you've posted. You've certainly been on my mind.
ReplyDeleteAs you've learned “…thinking I could change things merely by force of my will.” doesn't work. This is me; and something I definitely need to work on going forward.
It's wonderful that you have family/support system surrounding you with love. I imagine learning to live in this new normal is extraordinarily hard and I want you to give yourself grace as you learn to navigate it. And navigate it you will, I'm sure. Sending love. xo
Gigi--Thank you so much for thinking of me. I'm always glad to see you here in Comments.
DeleteIt's a hard, hard task to learn to Let Go. I was raised to fight hard and fought hard my whole life. It will be tough work to overcome that, Gigi, but it will be liberating. Good luck.
I have been getting better at giving myself some grace and peace about needing rest, not being able to do so many things, taking longer to do some of the things that I can. I have to if I want to be happy. And I do. So the tradeoff is worth it.
Your support is much appreciated. xo
Oh, Nance. Thank you for sharing an update. I don't think I can say things any better than Lisa did. She nailed it, right?
ReplyDeleteI feel for you. I can't begin to imagine your frustration, esp wanting to chase after Theo. I do hope that in time things will become easier as you accept where you are and find your own way. Of course your family members are so helpful, because you trained them all so well. ;) I do think it is key that you're asking for help. My guess is that's not your usual mode, and I'm sure it takes some getting used to.
This illness sounds relentless and irritating. Please know that I'm thinking of you, and hoping that you experience some improvements along the way. Take care.
Your list posts were perfection, some made me laugh out loud. Thanks for putting for the effort to share those. No need to post every day for a month - whatever you post and whenever you do - it fills me up with smiles for long after reading.
Ernie--Your comment is so gracious and kind. Especially appreciated are your last few sentences about my writing. I value those compliments so highly.
DeleteLisa really did capture everything so well. She has lived with a chronic condition for a long time and knows of what she speaks. I admire how she has learned to cope and live so fully.
Thank you so much for keeping me in your thoughts as you go about your relentlessly busy life. You are excellent at delegating and calling in the troops to pitch in; I need to follow your example. You're as close to a superwoman as I've seen, and even you don't try to do it all on your own every single day.
I have felt so whiny lately - it's hard to sleep comfortably with my shoulder, and there's never going to be a good time to have surgery, and even that won't help my thumb and knee pain. But you know what? My life is actually pretty darned good. I'm not really comparing maladies, but you are going through so much more than I am. I read the list of things that you can't do & my heart breaks for you because I know that you loved doing them (even vacuuming). I hope that you can find some peace and acceptance, and that there is a miracle cure right around the corner!
ReplyDeleteBug--You know my philosophy: Everyone needs some time to bitch and wallow. There's nothing wrong with it until it becomes a lifestyle.
DeleteI am well on my way to finding peace and acceptance, but that doesn't mean giving up. I'm always looking for a workaround--ways to exploit my pockets of energy and things I can do. Do I still have shitful days and moments? Oh, hell yes. But they are fewer and farther between.
There's never a good time to have surgery. Ever. So ask yourself this: Have I suffered enough yet?
I was thinking of you this past week, hoping that you were having a better time and were able to enjoy Thanksgiving with your dear family. I'm sorry that you're struggling with your health and your new life focus.
ReplyDeleteI will continue to pray that you regain your strength and can again enjoy your walks and playing with Theo. I see so many people who are dealing with health issues, and it really makes you stop and appreciate the gift of mobility...and I want you to have that again, more than anything.
I really enjoyed your lists---you made me laugh even if you didn't mean to. XO
BB Suz--Oh, I did mean to make you laugh!
DeleteThank you so much for thinking of me. I appreciate everyone's kind support here so much. I'll continue to make adjustments to my daily life, both physically and mentally/emotionally. I want to make sure I live as fully as I can. However that looks.
I am happy to hear that you are figuring out how to make things work for you. That's such a huge step to being back in your life! When you have to learn new ways to live, it can be stressful and even depressing, but instead of just throwing in the towel, you're deciding how you are going to keep going forward. Congratulations on keeping your own life for you!
ReplyDeleteBridget--Thank you. And you're so right that I'm really finding a way to get back into my own life. Any way I can find to do that, to move forward, is the goal.
Delete