Laughter as Therapy

Last week, my friend Shameka sent me a text inviting me to join her for a night out. The comedian Josh Blue was coming to town – did I want to go?

Of course, I said yes. I love Josh. His comedy is super funny and smart. He uses his disability (he has cerebral palsy) in his stand up routines, but not in an inspiration porn way. If you’ve never seen him perform, here’s a clip from his special “Sticky Fingers.”

After the week I had, I was looking forward to a night out with good friends. Kelley, Shameka, Katie and I arrived at the comedy club early because we wanted to be able to get a table which would accommodate 3 wheelchairs and still give us a good view. I expected to see more disabled peers in the audience because so many people I know like Josh, but we were the only three visibly disabled people in the room as far as I could tell.

Josh didn’t disappoint. He was hysterical! We laughed, and laughed, and laughed. At one point, I made the mistake of taking a drink when I thought he was pausing. I was not ready for the joke and almost spat my mouthful at Kellie. I don’t think she noticed.

It was very interesting to watch the mainly nondisabled audience respond to his jokes about disability. As a person who often jokes about the stupid crap nondisabled people say to me, Josh’s jokes were spot on. I don’t claim to have the same timing or talents, but whenever I make comments like he did I never notice the tension in my nondisabled listeners as was present early in the show last night.

Here’s the thing – laughter is an important tool in helping us find common ground with those who are not exactly like us! Josh said it himself in his show last night when he quipped, “Doesn’t it feel good to laugh?”

Yes! It felt great to laugh last night. As I’ve written about in several posts, the past eighteen months have been some of the most challenging months of my life. I have not had much laughter. I miss it. I dislike being angry, bitter and depressed. I have tried to embrace gratitude, and strive to keep public complaints to a minimum. But, sometimes things just suck.

Last night, surrounded by friends who “get it,” watching a comedian who “gets it,” I felt more like me than I’ve felt in months. This morning I woke up still laughing.

Thank you Shameka, Kelley and Katie for a wonderful night of friendship and fun. And thank you Josh for the work you do to help the nondisabled laugh at disability the way we’ve been laughing at it for years.

If you’re reading this in the Capital District of NY, Josh is performing again tonight (Saturday, July 29). His website lists his tour dates for other cities. You should go see him if you can. Maybe you’ll get to pose for your own photo after the show!

Photo of two women using wheelchairs and a man kneeling between them. The woman on the left is black and wearing glasses and a black shawl. The woman on right is white and is wearing a red shirt and blue skirt. The man has a beard and is wearing a black t-shirt  with the word "DELETE" in white letters. All three are laughing.

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Being Number Six

All my life, I have been referred to as “number six” by my father. Dad used numbers to describe me and my five older sisters whenever he spoke about us to others. Sometimes we would be at a party and he would call us over to introduce us to a friend.

Have you met Caroline? She’s my number five daughter. Caroline – come over here!

When my parents were first taking me to medical appointments to determine the cause of my disability, Dad always pulled out his wallet whenever the nurse or social worker expressed astonishment upon learning I was the youngest of six girls. Beaming with pride he would flip through the photographs in the plastic sleeves, naming us and offering a tidbit of information he felt important to share.

That’s Susan, number one. She’s pregnant with our first grandchild. And Mary Jane, number two. She’s studying to be a violin teacher.

Photo of six white women varying in age and their elderly parents. One of the women, the author, is seated in a wheelchair.

Dad always said he didn’t care what jobs we did when we grew up, as long as we we did them to the best of our abilities and helped others along the way. When he bragged about us to my orthopedic surgeon, he was as proud of Donna as he was of Sandy.

Smart girls, both of them. All of my girls went to college, and hopefully Denise will too. 

Dad had his favorite stories about each of us. When we gathered as a group for a family dinner or celebration, he would reminisce and share his memories with whoever happened to be around the table. It didn’t matter if you had heard the story many times before, you still laughed when he talked about the time he sent the “five girls” (how he always spoke about my sisters before the time I arrived) outside with a gallon of white paint so he could watch a football game in peace and quiet while they painted the fence. My mother arrived home later that afternoon to find my sisters had used an entire can of paint on just five feet of fence, but also on the grass, rocks, their hair and clothes.

You should have seen her face! She was fit to be tied. You girls were covered in paint.

I was an adult before I realized how much Dad had worried about me. As a child, I never knew he was anxious about whether I would become ill, or if my disability would shorten my life. Then last year at our annual DiNoto cookie bake, he took my hand as I was telling him about work and gave it a squeeze.

Well Niecie, I guess I don’t have to worry about you dying young anymore.

I was stunned, but tried to laughingly reassure him I was doing just fine and was now too old to be considered young if I were to die. While I squeezed his hand in return, I asked if he was still truly worried about me that much.

When you were little, they couldn’t tell us much about what to expect for you. I’m your father. I worry about not just you, but all my girls, all the time. It’s what dads do.

That was the last time I saw my father in person, the last time I held his hand, the last time he pulled me in for a hug and kiss.

Three weeks later, my phone rang as I was returning home from my early morning swim on a cold December morning. When the caller ID on my phone read “Mom and Dad” but Caroline’s voice came through the line, I knew something was wrong. Caroline’s voice cracked as she told me Dad had died. I don’t remember much of the rest of the conversation, probably because some of the other sisters were trying to call me and my phone kept beeping with incoming calls.

The day passed in a blur as I made plans to leave for a week in my hometown. I washed and packed clothes, wrapped Christmas presents and prepared cookie trays while fielding calls and texts from friends and family. Eventually I crashed in bed, exhausted from crying on and off all day. I fell asleep reviewing my mental list of what was left to pack in the morning.

I dreamed about Dad that night. He was getting ready for a fishing trip. I was a child, standing next to the pile of his gear, watching as he packed the back of his truck. When he was done, he slammed the tailgate. Turning to me, he smiled and tucked my hair behind my ear.

Don’t worry Niecie. I’ll bring back enough for all of us.

 

 

How Do You Measure a Year?

My world changed a year ago on January 13, 2016. That was the day one of my former Personal Assistants (PAs) did not follow my instructions, resulting in her dropping me to the floor during a transfer and fracturing my left femur.

I’ve written many posts about my progress this past year. I explained how it all happened in this post, then provided an update from the rehabilitation hospital in this post. I blogged about my transition home, and the challenges I faced as I struggled to prioritize my needs as I continued to heal.

There have been many gains this year. After months of therapy, I was able to successfully transfer into my driver seat in my van in April. Granted, performing that transfer requires such a high amount of my limited energy so I only drive when absolutely necessary. And I still can’t independently transfer back into my wheelchair when I arrive at my destination, which means I must have someone meet me so I can get out of my van.

That’s not entirely accurate. I CAN transfer out of my driver seat if I am parked on an uphill incline. Gravity still works, and when parked uphill, it gives me a boost when I slide back to my wheelchair. However, if I’m parked on an uphill incline, I can’t get back into my driver seat so I can drive back home. Stupid gravity – who said it was a good thing?!

I am still pursuing a new vehicle which will be modified with a high tech driving system. This will allow me to drive while seated in my wheelchair. The evaluation process is stalled for the moment, thanks to matters that deserve and will get their own blog post. But, eventually I will be fully independent for driving again and it WILL happen in 2017.

Five hundred twenty-five thousand six hundred minutes. Anyone who is a fan of the musical Rent, written by Jonathan Larson, knows a year contains 525,600 minutes. But as the opening song in the show tells us, time is just one way to measure a year.

I can measure the past year in the number of hospital admissions (2), the number of new internal permanent screws in my leg (8), the number of new PAs I’ve hired (4), the number of months absent from work (4) and the number of address changes (1). I can also measure the number of new great nieces and nephews born (2), the number of visits with my best friend (5), the number of blog posts (72) or the number of funerals (thankfully, only 1).

But when I think about this past year, the one word that keeps repeating itself in my head is the one thing Jonathan Larson encourages us to measure most – love. This year, I have been blessed to be the recipient of so much love from friends, family, and readers. When I first started writing about my fracture and rehab, I received cards and letters from around the world. I had at least five visitors every day for the month I was hospitalized. People called, sent Facebook messages and Skyped when I was unable to leave my house.

Although I need assistance every day in order to survive, I am bad at asking for it. I would rather do just about anything else than ask someone to help me when a PA has called in sick or has quit. However, this year I had to repeatedly ask the people in my support network for their assistance and you know what happened? Almost 100% of the time they said yes! Whenever I asked for help, I received it. If that isn’t love, I don’t know what is.

So while 2016 was full of more challenges than I’ve had to face in quite some time, it was also full of love. I’d rather measure the love.

I searched for a good video of this song and was overwhelmed at how many hits came up. Then, I stumbled on this one with ASL interpretation and knew this would be the one to share.

The words "30 days of thanks" in cursive writing on a green square.

A Week After 30 Days

It has been just over a week since my last 30 Days of Thanks post. As I do after each blogging challenge, I have been reflecting on this experience and trying to gather my thoughts into something worth posting. Although this is my third time completing this challenge, there are still lessons I am learning along the way.

1. Guests are Great!

This was the first year I asked others to consider taking part in my 30 Days of Thanks. I’ll be honest and admit I did this for selfish reasons. Guest posts meant less content I had to create myself. I am taking a memoir writing course this year, and the daily writing required for the course takes up time I would have otherwise used for my blog posts.

Thankfully, several of my friends took me up on my invitation to write, granting me the privilege of sharing their amazing work to my loyal readers. Reading their work also caused me to stop and think about their writing, how they crafted their messages, what devices they used effectively and how I might try to incorporate these in my future writing. I am grateful for their generosity, but embarrassed to admit…

2. I Left Out a Post.

Early in my blogging life, I connected with a delightful writer, Lily. This year, Lily branched out and started writing about daily random acts of kindness on a new blog. I asked her if she would be willing to write a piece for my 30 Days of Thanks. Lily wrote a very insightful piece, thanking a man who broke her heart. I was honored she offered it to me and scheduled it (I thought) to appear in late November. Then, two days before it was to post, I realized it was not in my list of posts. What’s more, I couldn’t find the email and file containing the post. I panicked. I searched late one night then went to bed, promising to do it first thing in the morning. Only, I didn’t do it because work, Personal Assistant illness, life – you pick it. I forgot. I forgot to fix my mistake, and I never ran Lily’s post. I have apologized to Lily, and I hope she will forgive me and let me make it up to her. Now I’m owning up to all of you, because I feel like I’ve let Lily down and I dislike being the cause of anyone’s disappointment.

3. “Not All Rock Stars Play Guitar.”

Prior to last month, I averaged 50 blog visitors per post. The largest number of visitors to DeeScribes in one day occurred in September 2015 when I wrote the post, I Never Said He Wasn’t Being Kind. Two hundred seventy six visitors read that post, a record which held until November 22 when I wrote this post about my friend Mike. Within two hours of posting, I had 50 visitors. The post was shared by multiple people and then Mike shared it. After eight hours, it had been seen by over 200 people. I knew before I went to bed that night it had broken my prior “daily record” and was approaching 290.

I can never predict what will resonate with readers, and what will appeal to a large number of people. I am convinced if you put a photo of an attractive man in uniform with your post, your blog stats will improve for the day. I told Mike I planned to use his photo with a random post just to test my theory sometime. He’s the one who gave me the quote at the start of this section, as well as the story for an amazing day on my blog. Thanks again Mike. You and the other officers are definitely getting cookies this year.

4. People Like to be Surprised with a Thank You Note.

Before I write and share my 30 Days of Thanks posts, I always ask the subjects of my posts if they will permit me to share my thank you note to them on my blog. Only one person has ever refused, and of course I honored her wishes. This year, for the first time, I wrote posts about each of my sisters without telling them in advance I planned to feature them individually. Once the first post about Sandy went live, Donna, Susan and Caroline knew their own posts would be coming. But, I did not share my posts with them in advance. They all responded to the memories I shared, and sent me delightful notes or comments in return. I’m glad I took the time to write separate posts for all of them as gifts for all they do for me.

Thank you to everyone who supported me and my guest bloggers through my 30 Days of Thanks challenge. I am grateful for your comments and shares. I hope you will continue to practice daily gratitude for the people and blessings in your life. And if you have time, send someone a thank you note. It will make their day.

30 Days of Thanks Day 30 – The Pool Gang

I have never been a fan of exercise. This is partly because it is difficult for me to physically move my body, and exercise requires movement to be effective. It is also partly because I have never experienced the endorphin rush that is described by others who enjoy exercise. I don’t feel good when I exercise. I just feel fatigued and tired.

The only form of exercise I can do is aquatic therapy in a therapeutic pool. There are three accessible therapeutic pools in my area, and each one is at least a half hour drive from where I live. So, getting to the pool is a four hour commitment – 40 minutes to drive there, time to get undressed and transfer to a pool chair to go in, an hour in the pool, an hour to shower and get dressed, and 40 minutes to get back home. Add the fact that I need another person to accompany me for any of this to happen, and I don’t get to the pool that often.

Or rather, I didn’t get to the pool that often before May. But now that I am still trying to get stronger and recover from my femur fracture? I have become a regular at the Sunnyview Hospital therapeutic pool on Mondays and Wednesdays for the 7 AM open swim.

Today I give thanks for the other regulars at the pool. Jose, Chip, Dominick, Alberto, Susan, Tom, Sister Joan, Sue, The Doctor and his wife (I still don’t know their names after 6 months), Will, Debbie, and the others who sometimes cycle through welcomed me and my Personal Assistant Tina with open arms. They offer support and encouragement to everyone in the pool. When someone is absent, they worry. If someone has good news, they celebrate.

I still haven’t turned into a person who loves to exercise. But I look forward to spending time with my morning friends in the pool. The comraderie between us is positive and uplifting. As Tina put it when I read her a draft of this post driving to the pool this morning, it’s like we’re one big family.

Recovering from an illness or injury is difficult and requires determination and stamina. Having a peer support group keeps me focused. I know they will question me if I start to slack off. Last week when I walked for the first time while submerged in the pool they gave me kudos.

Thank you to my morning friends who greet me each Monday and Wednesday. I appreciate you welcoming me into the fold. There’s no better way to start the day.