2021 is almost over and yet I am not substantially closer to following my writing dream. The year has been difficult on many levels – the pandemic, personal health challenges, work changes. You know the drill.
Earlier this week I realized I had not listened to any Christmas music. If you have been following me since I started this blog, you may remember from this post, it’s hard to be sad when you’re singing. Sure enough, as soon as I started singing “Jingle Bells” in my car, my mood changed. Later today I will drive to my hometown for the holiday weekend. I plan to sing the entire 2 hour drive using this Christmas Road Trip playlist, which you can get to by clicking the link below.
I’m sharing my playlist as a gift to you. The songs are a mix of religious and secular, traditional and new. If you are hitting the road this holiday, open your Spotify app and join the fun!
I hope your holiday is full of joy and love. I look forward to seeing you in the New Year when my quest to pursue my writing dreams will start anew!
I can’t believe I’ve been blogging long enough for this to be my third post about the Capital Region Special Surgery Race for Hope. If you haven’t read my first two posts on this topic, you can read the 2014 post here, and the 2015 post here. If you want to skip them, here is a brief summary about the race and why it matters to my family.
The Race for Hope is a 5K fundraiser to raise money to support programs and services for patients who are in treatment for brain, head and neck cancer. Our involvement with the race began in 2011 after my sister Mary Jane was diagnosed with glioblastoma, an aggressive brain cancer. My niece Karen, Mary Jane’s youngest daughter, created Team MJ in honor of her mother. Karen first ran the Race for Hope, along with her brother and brother-in-law, in 2011. Mary Jane and her husband, Zip, cheered from the sidelines. Sadly, it was the only time Mary Jane and Zip would see their family run the race as they both passed away from their respective terminal cancer diagnoses prior to the 2012 Race for Hope.
Yesterday, family and friends gathered again in our bright yellow Team MJ shirts. We saw familiar teams – Susan’s Busy Bee’s and Linda’s No Taste Bakers – along with new groups. Runners of all ages completed the course, and this year boasted quite a number of stroller entries. One of the women from Linda’s team said many of their runners were walking with strollers this year.
Although the race venue and order of events remain the same, change is happening because life has a way of moving forward. Team members are having children and using strollers instead of running. Children who used to watch from the sidelines are now walking the race. New shirts are ordered because young ones are outgrowing the shirts they used to wear. New relationships mean new team members.
This year, I spent most of the race with my niece’s children – her three year old son snuggled in my lap and her six year old daughter riding on the back of my wheelchair. Together we danced in the parking lot, visited with dogs, shared a huge chocolate chip muffin, and cheered on the runners while waiting for Mommy and Daddy to finish the race.
In prior years, I have spent at least part of the race shedding a few tears while thinking about how my sister and brother-in-law would be so proud watching their children and grandchildren continuing to honor Mary Jane’s request that they do something for others who are facing brain, head and neck cancer. Instead, this year I laughed. How come nobody told me having a cuddly three year old boy wearing a Yankees cap in your lap was such a good way to avoid melancholy thoughts?! And you would have thought I’d known the enthusiasm of an energetic six year old would be infectious. I think I knew both of these things, but it hit me yesterday how spending time with happy children can improve your mood when you are searching for your own “happy.”
Mary Jane knew this. A few weeks after the birth of her granddaughter (the one who spent the day riding around on my chair yesterday), she sent me and my other sisters an email of the following photo with the subject “first babysitting job.”
Hi all – Zip and I spent the afternoon babysitting. What a perfect way to spend the day. MJ
My sister was a smart cookie. She knew how important it was to help others, even when facing your own obstacles. She taught those of us who loved her how to live in the moment, to cherish each and every day. And she understood unconditional love, like the love of a child, was a key to happiness.
So, we continue on, even on the days when happiness seems to elude us. We connect with those we love, and do our best to make life better for those around is. It is what Mary Jane would have done, what she would want us to do.
This year has not been a happy year for me. Sure, there have been moments of laughter and joy. But if you look at the year as a whole, I have been depressed, cynical, sarcastic, moody, and angry. I know I have not been myself and recently I’ve been hit upside the head by what is really happening.
Since my femur fracture in January, and throughout the subsequent months of rehabilitation, I have not bothered with much beyond the basics when it comes to my daily habits. Most days, if I’ve been able to get out of bed, pee, and get dressed, I’ve been content to call the morning a success. Bonus points for the days I’ve managed to shower!
I am not a vain person, but I have been blessed by the hair gods. My hair is thick and pretty much does whatever I ask it to do. Every now and then I find a stray gray, but nothing that makes me want to rush to color it. As I dried my hair on Wednesday while preparing for a work event, I realized it had been at least six months since I took the time to dry and style my hair. Unless you count a pony tail as a style, my hair hasn’t had much of a style this year.
Friends and family know I can be counted on for lipstick. I don’t wear much makeup, but I always have at least four or five lipsticks with me. A few years ago at a family reunion, I provided various shades to all my aunts and many cousins before we took the group photo. Yet, I can count on one hand the number of times I have worn lipstick in 2016.
I love music. There are over 6,000 songs in my iTunes library. I am usually singing or humming, and most of the time I don’t realize it. This always makes for interesting times at work when I am not aware I am singing at my computer while people are trying to do work around me. But since January, I have rarely listened to music. Even sadder, today I realized I have not even opened iTunes on my computer since I moved in August except to download audiobooks from the library onto my iPod.
For the past twenty five years, I have treated myself to new perfume at Christmas. Since 1998, my signature scent has been “Happy” by Clinique. I like the scent because, well, it makes me happy. Friends say it’s “very Dee.” Wearing one spritz per day, it takes me about a year to finish a bottle. Today, I looked at the bottle of perfume I purchased last December and realized I have not worn any perfume this year.
I am an extrovert and draw energy from being around other people. Every time I have completed a Myers-Briggs Type Indicator personality inventory, my scores on the extroversion/introversion scale have been the same – total extroversion, not a single introversion answer. I draw energy from being around other people and seek out social opportunities. I nurture friendships and do my best to connect with others on a regular basis. Some people tease me for having too many friends. Not this year. I haven’t gone out to happy hour since last December. When I have free time, I don’t call friends or seek out opportunities for socialization.
These observations made me realize I am falling back into the trap of withdrawing from the world and nurturing my relationship with grief. I have a comfortable relationship with grief. I stoically cultivated it four years ago as I trudged through the “year of funerals.” Fourteen funerals in thirteen months can do that to a person. I became good at sitting alone with my thoughts, ignoring the habits which bring me joy and make me feel nourished and alive.
I’m walking down that path again now and I need to turn back before I go any further. This year, I am not grieving the loss of loved ones or friends. Rather, I am grieving a further loss of independence and mobility due to my injury, the loss of my ability to manage daily pain to a level which does not interfere with my daily routine, the loss of my ability to drive independently, and the loss of trust in some of my Personal Assistant staff.
When I am mired in grief, my daily habits change. Priorities shift. I compromise, trying to balance what I would like to do, what I need to do, and what I actually have the energy to do. Instead of practicing daily gratitude, I engage in destructive list making. I expound on all that is negative, ignoring all the good still surrounding me.
Today, I pledge to make a shift in my daily habits. I will resume my daily writing. I will start wearing perfume and lipstick again. I will practice daily gratitude. I will schedule time with friends and reach out to those I have been avoiding. I will enroll in that writing class I have been considering. I will submit that essay I have been working on. I will sing songs that always make me happy.
Because sometimes when you pretend to be happy, you find out you really are happier than you think you are. And Straight No Chaser singing one of my favorite songs really does make me very happy.
I am on vacation this week, spending time at my sister Caroline’s house – or “the inn on the hill” as we call it. I spent Christmas week at her house last year too. The break from my normal routine allows me to relax and reconnect with friends and family. It also serves to remind me that I am not a dog person.
I know, many of you ARE dog people. That is your preference, and I respect it.
You probably like having dogs lick your face at 5:30 AM, telling you they need to go outside. You probaby enjoy when your dog rubs up against your dress black pants and leaves slobber marks down your leg for all to see. You may even enjoy having toys covered in dog drool dropped in your lap while you are trying to read or write.
I do not. I like visiting people who have dogs. Then I like going home where I don’t have the responsibility of a pet.
Caroline has three dogs – Molly, Walter and Samantha. Molly and Walter are large German Shepherds. They are smart, intuitive, and loyal. Samantha is, well, she is Samantha.
Last year at Christmas, Samantha, an old English bulldog, was just an eight weeks old puppy- tiny, soft and able to fit on my lap in a cute bundle. Watching her play with the older and bigger dogs provided hours of entertainment. She inspired one of my most popular posts where I shared how to live like a puppy.
Now Samantha is one year old and no longer fits in my lap. She still plays with Molly, but it is fairly evident Walter thinks he is above such nonsense. One of her favorite games is to hook her toy on my wheelchair and try to tug it. It is pretty fun to watch her attempt to drag my 250 pound chair across the floor. It’s more fun to watch her go sliding across the floor when the toy unexpectedly comes loose.
So, this week I will play with an energentic one year old Samantha in between reading, writing, crocheting and visiting friends. She still lives like a puppy and I will do my best to follow her lead.
Until it’s nap time. Then I’ll see if Molly will let me use her for a pillow like Samantha does.
Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the twelfth question in the Challenge. I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later.
Here is this week’s question:
Describe a good day in relation to the ways your life is affected by disability.
When I refer to a good or bad day in relation to my disability, I often talk about energy, or my lack thereof. My fluctuating energy levels influence the impact of my disability on my daily activities.
One of the best descriptions of how this plays out in every day life was written by Christine Miserandino. I have often referred to the “spoon post” when trying to explain my process of energy conservation. You can find her explanationhere. It is well worth the read.
The theory uses spoons as a metaphor for energy. Every day you are given a set amount of spoons to use. The number may vary based on how your body is functioning on a given day. While I don’t consider myself sick, a word Christine uses in her essay, I agree with her description: “…the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to.”
Every day, each task you perform requires you to use one or more spoons. You have to accomplish certain tasks, no matter how many spoons you have. So, if you wake up on a good day with 20 spoons and you only need 15 spoons to do all you need to do that day – it’s a good energy day.
But when you wake up with 10 spoons and you still need to accomplish 15 spoons-worth of activity, you have to make compromises. Instead of washing your hair, you may decide to wear a hat. Instead of making breakfast, you may just grab an energy bar. Instead of doing laundry, you may buy new underwear. Personal experience right there.
Good days mean I have good energy. Good days mean I don’t limit my activities because of my low energy. On good days, I have enough spoons to manage all the tasks required of me. I don’t have to make sacrifices in my plans just so I have enough energy at the end of the day to wash my face and brush my teeth. On good days I have the strength to lift my arm to brush the back of my hair. On good days I am able to lift a fork to my mouth without needing to prop up my right hand with my left.
A good day also means I have adequate Personal Assistant staff and don’t need to worry about how I will get out of bed in the morning, go the bathroom when I get home. On a good day, my staff show up on time for their shifts, in a pleasant mood. On good days, the phone doesn’t buzz at 4:30 PM (after I’ve had my afternoon cup of tea) with a text from a PA telling me she can’t work her evening shift, leaving me to scramble to find someone else to help me use the bathroom.
Personal attitude can make difficult days or low energy days less stressful. There are things I just won’t let ruin an otherwise good day. There are some mornings I will leave the house, get in my car, take a deep breath and tell myself we are starting the day over.
We all have choices in life. I am one of the lucky ones who gets to make more choices than others. Most good days, I choose happiness over frustration; acceptance over anxiety.
DeeScribes 