Lift Your Veil!

dancingwithalsandlife.blogspot.com

Experiencing slow but continual motor function loss of my arms, hands and now in my legs, sucks!. Prior to living with ALS, I was very active with a busy life consisting of my career and family. For self care, I enjoyed hobbies to help me decompress from the world.  In 2021, my busyness came to a screeching halt going from 100 miles an hour to nothing and gave me unbearable whiplash. I just felt so lost when everything was being stripped away from me, especially all my hobbies that required using my hands such as gardening, baking, crafts, crocheting, and reading. Focusing on the losses just threw me into a tailspin of deep depression and self isolation. I would spend countless hours scrolling through webpages on 101 hobbies to try, hoping and praying for hook, line and sinker that would fit my new normal. I even googled activities/hobbies for disabled individuals. Funny thing is, the website said disabled individuals should try gardening, puzzles, cooking, baking, photography, arts and crafts, reading, musical instruments, yoga, biking, and swimming. Most of the suggestions on the lists were my current hobbies that I was no longer able to do or hobbies that require use of arms and hands. Trying to find passive things to do, when I am not a passive person, was a huge challenge for me. I always loved listening to music, and I did find a new found love for backyard birdwatching. However, listening to music and watching birds fly in and out of my backyard did not take up 8-12 hours in the day. Although TV is a passive activity, I was never one who loved sitting in front of the tube for hours on end so engaging in that definitely wasn't going to satisfy me.  Taking a nap was something I could do to chew up some time throughout the day. But I didn't want to make it a habit because naps would mess with my sleeping schedule by sleeping all day and then being up all night. When I was able to fill my mornings with something to do, then later in the afternoon and evening, I became very antsy.  I almost died of boredom because earlier in the day I already did everything I could think of doing within my limitations.  I found myself praying for the ticking of the clock to move at a faster pace so I could just go to bed or wishing it was a ticking bomb just waiting to explode so the misery would end.

On and off over the past few years I would dabble in writing about my ALS journey and experiences. Then I would just put it to the side because I was tired of thinking about having ALS, or I would just tell myself who would be interested in hearing my life story or experiences? Boring! After months of still not figuring out what I could do to fill up the hours of the day, I would search the website lists all over again in hopes that I missed something.  No luck!  I was living in a blindspot unable to see around me to find a solution.  I felt a little hopeless. I prayed and prayed about it,  “Please, God, give me a solution. You didn't design me to just sit idle.” This was also a time when I was trying to figure out my purpose and what I could do that didn't tap energy levels or put me in an unsafe situation.

On election day, my friends/neighbors drove me to the voting polls located at a local church.  While leaving, we drove through a cemetery located in the back of the property. While passing all the headstones, I remember thinking, wow, it has been a horrific year, and I feel a little dead inside just like these people in their graves.  I told myself feeling dead inside needs to change if I want to be among the living.  Afterwards, I had lunch with my neighbors/friends.  During lunch, I shared some pages of my life story with them. They told me I should write a book about it because it's interesting and could be helpful to others who may be experiencing some of the same things. I said well actually I have been dabbling in writing for the past two years and always stopped because I would lose confidence in my writing thinking I'm not a good writer nor would anyone want to even hear my story.  It didn’t help that I was traumatized by an English teacher while in middle school which still resonates with my feeling of being an inadequate writer.  My neighbor/friend, a retired educator said to me, “I would love to be your editor!”  Besides being a retired principal, reading specialist and English major in the past, she taught writing classes to adults and has a passion for reading and writing. I kind of just laughed it off because I’m not a writer, but for some reason, her comment nagged at me for the rest of the week. 

Therefore, with my neighbors words of encouragement, I picked up my iPad once again and started writing, still not feeling confident about it.  Writing a book seemed like a big undertaking and a daunting task especially since everything I write needs to be voiced commands into a document because I am no longer able to type on a keyboard. All of the corrections also need to be voice commands to make the changes. When I started writing again, I thought, well, if others don't read or find it interesting, it could be a memoir of my life just for my girls and immediate family, maybe some close friends.  My daughters are in the tech age so I thought using an electronic platform would be the best. I started researching how to start blogging. I hadn’t any experience with blogging nor did I know where to even begin. Like all of us, when we don't know where to begin, I looked to YouTube for videos to educate myself and thought, I can do this. 

It was also my birthday week. At a celebratory dinner with my spouse. I shared my idea of starting a blog with some of my writing. While feeding me my birthday meal, he smiled and encouraged me to give it a try. So, on that day, at that very special moment in time, I decided I was going to write short blogs about real life living with ALS.  What do I have to lose anyway?  While watching YouTube videos earlier in the week, I learned how to get started. There was a possibility of blogging and keeping everything private which was appealing to me. The thought of going public with my writing literally terrified the shit out of me.  However, I knew if I was going to write I wanted it to be from the heart and be honest. But actually putting my most intimate thoughts to paper without filtering them is extremely terrifying. What will people think? I believe most of us walk through life with a sheer veil covering part of our faces just enough for people to peek through but not clear enough to see all the details.  I'm sure most people don't want others to see deep into their souls revealing how they truly think or feel.  Can you imagine what life would look like if everyone could lift the veil and truly be themselves not trying to act a certain way because it's expected or be afraid of what people think or how they will respond? How freeing that would be?

So the journey started. The development of my blog was born, dancing with ALS and life.  I will admit that I was scared because putting myself out there made me feel so vulnerable. When I was emotionally prepared, I invited my spouse, girls and my neighbor/friend to view my writing.  When they read my short blogs, they said it was the type of writing that was engaging, funny and real and needed to be shared with others. That was the beginning of the relationship between a writer and editor! Thank you, Cindy, for walking with me on this journey. I couldn't do it without you and your encouragement. 

As the story goes, a trip to vote and lunch, driving through a cemetery, a wonderful 52nd birthday celebration with my spouse, family and friend support as well as encouragement to keep writing and share my words publicly gave me the courage to lift up my veil and share with the world who I really am.  I am not just a person who is living with a debilitating disease, ALS, but a fun loving person who has finally found her sedentary hobby to fill the hours of her days. It keeps my mind sharp and active, shares what dancing with life truly looks like and provides the God winks I feel I receive along the way. Maybe you should consider lifting your veil too! It's not as scary as you may think!

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