How to improve your life and make New Years resolutions With An Invisible Disability like Charcot Marie Tooth Disease.

CHOOSE YOUR OWN “LIFE WITH AN INVISIBLE DISABILITY” STORY

Do you remember those Choose Your Own Adventure (CYA) books from the 80’s 90’s? I know I’m totally dating myself but I was soooo into them (for about a minute) in between Judy Bloom books (hijacked copy of Wifey not included) & the Sweet Valley High series.

The CYA books were told in 2nd person and after an initial story was outlined, you could flip to your page of choice to determine how the story would unfold and end. Most books had 20 +possible happy and not so happy endings to choose. Unlike other genres, the reader was given a sense of power and  freedom to determine the story’s path & ultimately the fate of it’s characters.

So, I was thinking (this always gets an “oh no” when said out loud in my house) let’s forgo making the same clichéd New Year’s resolutions again this year that we’ll inevitably beat ourselves up about breaking by months end. Instead, why don’t we try treating 2019 like it’s our very own Choose Your Own Adventure story? We decide who we want to be in 2019 and create the life we want as people living invisible disabilities. What do you think? If you’re in, let’s start by creating an outline for your new story.

 The Title Of Your Story

What will you call your 2019 adventure story? I like to come up with a title before writing any content as it helps me formulate my overall message. When deciding on the title, the most important question to ask yourself is,“who is my story for”?

Oftentimes people with chronic conditions and disabilities feel guilty and unworthy because of their perceived limitations and as a result, they may prioritize other’s interests before their own wants and needs. Some people with physical challenges stay home feeling sorry for themselves or sit on the sidelines & watch as family members & friends try new experiences and live.  If this has been your story in previous years, it’s time to rewrite it or throw it away and start over; It got horrible reviews on Amazon anyhow.

The title of your new adventure story should reflect the awesome person you are today (not who you once were pre-disability) or who you want to become. Remember, You are the creator and sole hero of this new story, so it’s up to you to create a title that will grab your own attention. For example, check out my story’s title: “The Untold Tale of A Fearless Woman Who Lives Her Best Life In 2019”. It’s good, right? So, what will you call your adventure story?

 The Characters

Every great hero needs a supporting cast of characters that lift her up and allow her to sparkle. When you have an invisible disability it is especially important to surround yourself with positive, empathetic people that accept you unconditionally.

Take a minute to think about the people in your life…

  • Who brings out the best in you? Who do you enjoy spending time with?
  • Who in your life are you most authentic with?
  • Who are your finish line friends?
     

The great news here is that you have the power to choose who gets a significant role in your new adventure story. Ok, I know what you’re thinking…Some characters can’t be written off so easily (like you’re in-laws or siblings). But you can choose who gets speaking parts in your story, right?

We may not be able to control other people, but we can control how we let others affect how we feel about ourselves. My new story will have fewer fluffy type characters than in past stories (beginning with a Facebook cleanse) as I’m gonna focus on the relationships that matter. I also want to leave room in my story for new characters.

 The Plot

You are your most important reader and it’s up to you to create a new story that fits your style and excites you. Of course, you can just play it safe and copy and paste the same predictable story you’ve written before. Or, you can get out of your comfort zone and see where the adventures take you.

As you develop the plot ask yourself these questions:

  • Am I living my best life? Do I let my disability define what I can and cannot do?
  • What needs to change in my life in order for me to be the best version of myself?

The best plots are unpredictable and exciting. They are also not linear and tend to have many twists and turns. There will be days that are harder than others but keep moving forward. Like all great adventure stories, there is never just one ending or path to get to the pot of gold or to find true love.

 The Conclusion

We may not be able to control our disabilities but we can decide how we want to live our lives with them. After outlining your new adventure story, it’s time to start living it. No skimming the chapters or skipping to the end; It is the experiences along the way that matter most and lead you to choose the best ending.

I may even want to publish your new story here. Ok, I’m not Random House and can’t pay you a dime, but your story may inspire others to create their own. What do you think? Let me know in the comments below.

Xoxo

Lainie

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24 Comments

  1. Omg I absolutely love this post. It’s brilliant Lainie & one of your best. Thank you for being a bright light in my day everyday. Your posts truly make my life better.

  2. love this! taking such a fun concept that we all enjoyed as kids and making it relevant and useful (and still fun!) for us as adults!! your blogs with their unique themes and clever style continue to amaze me!

  3. Lainie, this is a wonderful post…I’ve had my disabity going into 5th year.
    I realized I need to take some serious action with my life..I was/am letting my disability define who I am. I’m a senior, it’s never to late to change. I am saying “too much”, I can’t do that, I’m not strong enough, I’ll get to tired, I’m too old. I noticed because I said no too many times my friends are great but not asking me to do things anymore.
    At my WW mtg. We are asking ourselves, what I want to me like in 5 years. I don’t like where I am now and I don’t want to be the same or worse in five years.
    I’m starting my journey by 1. Writing my own adventure story 2. Setting doable goals for myself, like taking golf lessons, And then practice 3. I don’t want to set my self up for failure so I’m focusing on my mental health as well as physical…putting things down in writing helps me focus and stay on target. I can do this and need to think positive thoughts. Thanks I’ll keep in touch. Sandra
    ,

    • Sandra,

      I so appreciate your honest heartfelt comment. You are a true testament to the fact that we can all reassess and change our lives for the better at any age. Good for you for seeing things as they are (saying no one too many times) and for getting out of your comfort zone and trying new things. I would love to be part of your journey so please check in and keep me updated. ?

    • Yes, I had back surgery, the perphial nerve was damaged and I have foot drop paralysis, left foot with nerve damaged up to just below knee. I discovered Allard Braces which has made life so much better..I can do most all things. But being 76 and I do have depression I find myself feeling much too sorry for myself. I had a doctor I went to see at Mass General, one of many in those first couple of years. I asked him if I could get worse. He said no, but you have to keep moving, he said it can’t be fixed and asked if I could live with that. That was my turning point, I began looking for ways to deal with my foot…thus I discovered Allard!
      Thanks for asking.

  4. Happy to Lainie & all at Trend-able. Like everyone else I love this post and the different way at looking to the future…I would certainly like to give it a go! I have nominated you for the Versatile blogger award and shared one of your posts on my regular “Monday Magic” feature – find details for the award here: https://painpalsblog.com/2019/01/06/old-year-new-year-and-being-a-versatile-blogger/. It would be lovely if you join in, but don’t feel you have to – either is cool! Claire x

    • Hi Claire, What a huge honor! Thank you so much for that and for reading & commenting. I will definitely check out the post and try to participate but crazy week. Thank you so so much !

  5. It would be simpler if this disability was still invisible and I had my balance, not have chronic pain and not require a care taker, a power wheelchair and/or a walker. My goals are to save up for a light weight power chair so it might allow me to get out more. Wheelchair lift didn’t work for my van. I have been building a wonderful library. Working to find a good ways to catalogue my (getting seriously large) book collection.
    It’s a good bit more difficult to live your goals and dreams when you require much help & you really only have 1 person there because he’s a housemate. His favorite thing is watching TV, videos mine are reading, photography and gardening.

    • Hi Tracie,

      You are right, it might be easier for people who do not have as many physical challenges as you have. …in some cases, it may not. Remember, everyone deals with challenges differently & we can get stuck and angry when we compare. It sounds like you have a great goal for the coming year and a plan to be more active when you reach it & get that power chair. I’m sending positive energy and wishes your way & hope you reach that goal sooner than expected. I love readers and totally appreciate a great book collection. These days there are many ways for avid readers to connect…Maybe an online book club or something that allows you to connect with people who share your interests? Anyhow, thanks so much for reading.

    • Tracie
      I have balance and mobility issues that require me to have some assistance also. I have been an avid reader my whole life (73 this year). People joke about my collecting books. I think I am a researcher at heart. If it interests me I collect books. To catalogue start by defining what the title is, the important content, the author, then what is the main thing or things that you would go back for in each book. For example, I attempt art so I would do something like Daily Painting, Carole Martin, practice skills, business setup, sales, references.
      Hope this gives you a starting point. My collection at one time had over 200 cookbooks! Had to do some serious thinning. Still have a few friends.

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