The RENEW Through Writing project encourages people to explore what it means to live well or adjust resiliently to a neurologic condition or age-related changes. Each month our community receives a writing prompt. Those interested can respond by submitting a few words, phrases, even a few paragraphs or prose (if that’s their style). 

 

November 2024
“What does a good day look like?”  

A good day for me is finding time for my morning prayers, tai chi, completing a task on my to do list and being able to communicate effectively without feeling embarrassed.

  – Patty R

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A good day has different looks in my daily life. As I have gone on living with long COVID, I have gotten less picky in life, asking little of my days to be classified as good. I have learned to take life as it comes, day by day and in the same terms, I am to show up as I am but most always show up.

A good day is one without nausea or dizziness, which means eating or drinking liquids would be better.

In a good day I can take a walk, a yoga class, or stretch.

Every day I wake up to go to work, able to perform to a satisfactory level, it’s a good day. And I am not always killing it at work either but I showed up and even then, it’s still a good day.

I have learned to see every as a good day because the alternative is not an option that I am willing to give to myself yet.

Finally, the best part of every good day is that I get to see my family, my husband, kids, and grandkids.

  -Wendy O

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A good day looks like one with no Long Covid: Body aches, Gastrointestinal issues, Cognitive issues, Brain Fog, Remembering ~WHERE~ I parked my car (Condo living) & being able to understand a simple 30 or 60 min TV show.

Unfortunately, those days are **VERY FEW AND FAR BETWEEN**…since being Dx with Covid & Subsequently Long Covid…then end of 2020.
…{*sigh!*}…

  -Jill F

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Getting something done on my to do list that furthers my goals. (Overcoming procrastination/avoidance, inertia, and feeling overwhelmed).

  -Amanda A.

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I lack the ability to fix household things that break and wish I were mechanical so I could do so.  I lack the mindset and ability.  I also have trouble in following directions to assemble appliances or toys or electronics.  

But one thing I especially like and I’m good at is cooking foods.  I like following new healthy food recipes for friends.   A good day is a day when I can cook a good meal for others, and then enjoy the meal with them.  We had a couple over the other night for dinner. and I made a spinach and vegetable lasagna.  They really enjoyed the meal and it felt good that I was able to do something nice for them.  Though I’m simply following a recipe, I find it a creative pursuit.  Arlo Guthrie once said “good food is food you have with your friends”. 

  -Richard H

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A good day is being able to make a difference no matter how small in the life of another.

  -Linda D

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A good day starts with a good night’s sleep. This makes all the difference with any endeavor. The ability to make a good choice for breakfast, to get dressed, even to want to get out of bed, is all predicated on sleep.

A good day is one in which I am rested enough so that the feeling of heat and burning from the edges of my brain, subsides. I have less pain than usual and am able to feel hunger that is more in relationship to what I need. Then I feel thankful to be alive. I think of my children and want to go rouse them from their slumber, to see their sweet face’s against their fresh, flowered  pillowcases resting sublimely, to be the one to start their day with love and tenderness. On a really good day I would run downstairs before they had to rise and I’d make some homemade muffins and pop them in the oven so I knew they would have a warm, full stomach, and that they’d carry my love with them all day. On the best days they would wake up, be able to get ready without too much help, and sit down for breakfast. But those days are gone. Now, a good day is if I awake and don’t remember immediately how much I need them. How much I want them to feel cared for and strong and ready for their own days. Each of them are grown now, and far away, with someone wonderful to help them feel loved and cared for, someone whom they each want to take care of, too.

On a good day, I will not feel sad when I have to stifle the urge to call them, to sing them the good morning song, I will take their absence in stride. I will go to the kitchen and make tea and have the energy to clean the kitchen from the night before. I will take my tea back to bed with me and scoop up the dog and let him burrow under the covers and commit myself to remembering why I am alive and who I am. On a good day, the weather doesn’t matter, because my mood is not dictated by any external circumstance. On a good day, I then sit in my bed, grateful for the covers and the dog’s warmth, and drink my tea and then begin to remember all my dreams that have yet to be worked on and fully formed, or just the minutiae of the coming hours. I meditate and I pray. I have a friend who by this time, at 6 AM, has sent me a bible verse, as she does each morning. I simultaneously wince at dogma and embrace the intention and wisdom of spiritual writing. I meditate on the words, and see how they strike true to my situation in the moment, which they always do. I send her a quick “thank you, I love you” and she replies in kind.

I like to drink my tea all at once, so by now it is just the right temperature. Too hot and it will throw my internal temperature into chaos, I will become exhausted and weak. Too cool and I will not benefit from its lovely warming properties. It has always been this way, due to my disease. Temperatures wreak havoc with my own metabolism, as does food and exercise.

Everything I do has to be considered and weighed in its value; “is this a necessary task? Can I get the groceries or should I have them delivered? Do I need to walk around the block more than the pain in my tissues and muscles let me believe I can? How much do I push myself today?” I’d like to paint from morning to night, snuggle with my dog, talk to far away friends, and hear the enchanting voices of my children. A perfect day is one in which the pain is minimal, the children answer the phone, and my friends are not suffering in their own lives. But we cannot ask for perfect days, we can only hope for days in which we find meaning in our existence.

A good day is one in which I do not allow myself to become humiliated by my limitations. I can use the precious energy from sleep to work and tend to the needs of others. The beloved strangers, who come to me as clients. Their needs then sharpen my focus. I then remember that I am very good at my work. I pay bills, have food and shelter. Every day from which meaning can be derived, when purpose overcomes pain, when thankfulness prevails, is a very, very good day.

    -Isabella N.

Kirk Daffner, M.D. and Margaret O’Connor, Ph.D. were featured in the story, “You can no longer drive, and good luck’: Figuring out how long it’s safe to drive has become the third rail of aging,” in Boston Globe. 

Click here to read the article

Kirk Daffner, M.D. was featured in the article, “Alone in the spotlight but not alone,” in The Harvard Gazette. 

Click here to read the article

Reisa Sperling, M.D. was featured in, “Study Suggests Genetics as a Cause, Not Just a Risk, for Some Alzheimer’s,” in The New York Times. 

Click here to access the article

Written by Gina Shaw in Neurology Today.

Click here to read the article

By Neil Collins – “I was diagnosed with Alzheimer’s about 9 years ago. Poetry is apparently available to me forever. This poetry took me 3 hours to write at the public library.”

Love, life, companionship, happiness, joy, faith, belonging

Hopefully,
Love finds Life
Companionship finds Happiness
Joy finds its Faith
Belonging Each to Each Other.

My love’s Creation

What God created you with a roar?
Greater than all orchestras
Greater than all sounds of spring —
The wind in trees, rushing water, waves, thunder.
How did he and she together create such newness?

How did I find you?
How was I the one to find you?
How did you see me?

Will we ever have enough of each other?
Will there be enough time?
How long is Infinity?
Thus, a hope for Infinity’s purpose.

I expect we may need an eternity.
We will need an eternity. Yes.
I believe in eternity.

Glad to have met you my dear Barbara.

Thoughts on Alzheimer’s:

Basically, I often cannot remember
Whatever has just happened.
It can sadden me.
I get used to it.
Breathe in, breath out,
Repeat,
Continue.
Enjoy the breathing, seeing, hearing.
Enjoy your heart’s beat.
You/we made it to being alive, to living.
Enjoy our todays. Our moments. Dear self.
Remember…

Poetry sometimes just sits down,
and waits outside the door.
Considering the mood
For itself…
For the day.
I ask for help.
“Help yourself” answers today’s grumpy whispery poetry.

… Some friend.

Seth Gale, M.D. was featured in the podcast episode, “ANA Investigates the Clinical Implementation of Lecanemab for Alzheimer’s Dementia.” 

Click here to listen to the podcast

By Sheila Neylon, (caregiver to her husband Tom – Tom Neylon taught secondary English for 41 years. He played piano in several bands. He had an encyclopedic knowledge of American Roots music. He was an indefatigable collector of LPs and CDs. Alzheimer’s stole everything from Tom and stole him from us. I wrote some poems when he was in hospice care as a kind of care for myself. We were married for 55 years. He was officially diagnosed in 2015 and died May 2, 2023.

By Ellen Zhang, MD – This poem is inspired by my time in the Geriatrics Connection Clinic where I heard stories of elderly people who were both patients and caregivers. One of the participants shared a story that blossomed into the poem that I have shared here. 

Researchers at the Brigham are developing and advancing treatment options for Alzheimer’s disease by intervening early to prevent the symptoms of the disease, taking aim at new targets, and building on the legacy of the Department of Neurology’s top researchers. Written by Abby Jackson in Brigham Clinical and Research News. 

Click here to read the story