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!