You Were Always on My Mind

Me and My Nachos
Me at said baseball game, eating a literal helmet of nachos

One of the things that drives me the most nuts about my disability is that it’s always there. Literally in every facet of my life it’s there (and is usually an issue). Going to a baseball game. Meeting new people. Dating. Disneyland. Getting my groceries into the house. The list goes on and on.

I have plenty of days when I wish I could just turn my MD off. I wish I could go to a baseball game like everyone else and not have to watch how much liquid I consume because I won’t be able to get up the stairs to go to the bathroom without help. I wish I could just meet new friends and go on dates without having to address the limp I have or why I have trouble getting out my chair. I can’t tell you how much I dream about being able to go upstairs like a person who doesn’t have holes in all of their muscle cells.

My best friend made a great point on this topic when she was out visiting last month. It was, of all places, at a baseball game. I was telling her how I wish I could just enjoy simple things like a baseball game like a person who didn’t have a disability. To not have to stress about getting up the stairs (I say that realizing I could request the accessible seats but then I’d have to deal with justifying my disability so sometimes the stairs are the less infuriating option). Her response was “I can only imagine, but the good thing is you get out and do things. You don’t let it hold you back.” I’d never really thought of it that way. I get so bogged down by focusing on the negatives of my MD sometimes, that I forget to look at what I’m actually doing about it. The positive ways I’m dealing with it in my life. I get frustrated yes, but there have probably only been a handful of times in recent years where I’ve ever said no to something because of my MD. I never want to let it hold me back from doing things I want to do.

Life is all about perspective so yes, I have this slightly annoying physical difference that causes me to need to do things a little differently or can make things harder sometimes. Yes it’s always there but the important part is what I do with that. I’m never going to be able to change having MD, but I can change and control how I live with it. Wallowing and being afraid to do anything aren’t options for me. I stress that I’m not including things like jumping out of a plane in that assertion. That’s just “plane” crazy 🙂  I have to still get out there and live my life, even if I’m living in a different way than other people are. Thanks for that bff!

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20 thoughts on “You Were Always on My Mind

  1. Hi Jackie, I really enjoyed reading your post and it made me think about life in a deeper way. I felt that in reading your post that if I subtracted the word “MD” and inserted any number of conditions or roadblocks that this post could be written by anyone struggling to be positive in a world that is so challenging.It shows to me that all humans, despite any seemingly obvious differences, are really the same when it comes to the soul. I think maybe it is part of the human condition to struggle against an adversary – whether it be disease, an oppressor, the need for change, or a mythical creature – and this storyline harkens back to the most ancient of legends and tales. So, maybe on days when it feel like war to find anything to be positive about, you can think of the great warriors like Hercules and Joan of Arc and know that you are in good company. Thanks for sharing and Go Angels!

    1. Hi Brittany! That’s a really good point and I’m glad that my post can resonate with everyone, not just people with MD. Sometimes I need a reminder myself that we’re really all the same when it comes down to our humanity. Thanks for the comment and for sure Go Angels! 🙂

  2. You have a great BFF Jackie 🙂 Good on you too 🙂
    Just wanted to let you know that I recently made a youtube channel, so I’ll be doing vlogs as well as blogs…and I’d love it if you checked it out and let me know your thoughts 🙂

    1. Thank you! And thank you for the Liebster Award nomination. I really appreciate it! Hoping to do all of that this weekend. Will definitely check out your YouTube channel too. Good for you for getting into vlogging!

    2. Ahhh ok I didn’t forget about you. I’m so sorry it took me so long to check out your YouTube channel. Loved the 10 random facts video and I too LOVE stationary. Seriously, anything office supply makes me feel like a kid on Christmas morning all over again. There’s nothing like a great pen or Post-It. I miss boy bands too! You have a great sense of humor, two thumbs up!

  3. Hi Jackie! Reading your post made me think about my life and how at times I let negativity affect me. Your bff gave some great advice that I think anyone can learn from and put into their own perspective! No matter how bad something can be, we have to still live through it. You made a great point that it’s how we perceive our situations and what we decide to do with it! Very inspiring and great advice to share! Reading your other posts about how you’re choosing to live your life definitely does not make you anything close to “plane” crazy! 🙂

    -Mariel

    1. Thanks so much Mariel! I wish I felt the way I described in my blog everyday. It’s hard for me to accept I can’t feel happy and positive all the time, otherwise I wouldn’t be human 🙂 Thanks for you comment which made this a positive Friday!

  4. Hi Jackie! I just want to say how brave and inspiring your outlook on life is! Reading your post reminded me of how life really is all about perspective and how sometimes its just easier to think negatively and about the things we can’t do or don’t have. its much harder to be present in the moment and grateful for all that we do have. It makes me really happy to know that you dont let anything stop you from enjoying life. i think it takes a lot of strength to persevere and live your life your way on your terms. Thank you sharing your story with me!

    -michelle

    1. Hi Michelle. Thanks so much for the encouragement. I wish I could say I have this perspective all the time. I definitely still have plenty of days where I hate having MD and I hate how difficult even the most simple thing can be sometimes. But even when I have those days, I still try to get out there and do things so I guess that’s all that matters in the end. Thanks for the comment!

  5. Hi Jackie!
    I found it so inspiring to read this blog article. Your positive outlook on life definitely made me think about how I can improve my perspective on life and tough situations. I loved when you said, “I’m never going to be able to change having MD, but I can change and control how I live with it.” There are so many things in life (for people with disabilities or not) that we don’t have the control to change or reverse, but we can change the way we think and live it out. Thank you for this inspiration, it was definitely something I needed to read today.

    1. Hi Rikita. I’m so glad this helped and resonated with you! That means a lot. You’re exactly right. We all have things in life we can’t control but we can control our perspective on. I’m admittedly one of the worst people about getting upset at things I can’t control (not even including my MD) but I’m definitely working on it. Thank you for your comment 🙂

  6. Greetings Jackie

    I want to thank you for helping gain insight to what it may be like to be an individual with MD. I am currently in occupational therapy school to try to help my future patient regain the ability to engage in their meaningful occupations; your blogs helps me piece together an emotional/social aspect individuals feel when experiencing various types of disorders. It is inspiring to me to see that you do not let MD hold you back. Throughout my lifetime I had to discover to stop focusing on the negative aspect of my life because doing so actually holds me back and demotivates me to explore/conquer goals in my life. As of recently we were taught in school of a theory called psychoneuroimmunology or PNI. This theory basically explains how negative thoughts may also affect the body negativity (stress->thalamus-> release of hormones-> physical symptoms. A technique I find myself doing is called, “3 positive 1 negative”; for every 1 negative thought I have, I think of 3 positive thoughts.

    Jackie you are a very capable intelligent woman, you can accomplish anything you set your mind to.
    “positive thoughts -> positive actions”

    I hope you the best

    Braddon Benson

    1. Hi Braddon. I’m so glad my blog could offer some insight for your future patients and the important work you’ll be doing as an OT. It’s so unbelievably true that our thoughts and attitude can affect our body. I was very stressed earlier in the year and I know it contributed to me getting sick twice in a two month period. I really like your method of thinking of 3 positive thoughts for every 1 negative thought! That’s a great approach I will definitely be trying the next time I get stuck in negative thinking. Appreciate your encouraging words!

  7. Hi Jackie,

    I read through many of your posts and I just want to thank you for inspiring me. I have faced the rigors of military life and many of times I have felt like giving up and moving on. I am currently trying to balance both grad school and my military responsibilities along with taking care of home. It’s great to see the fight in you and I appreciate it. Thank you again for auto correcting my thoughts and volition. Please know that you are in my prayers and I wish you the best.

    -Josh

    1. Hi Joshua. Wow! I can only imagine how much of a load that must be to balance all of that. I greatly admire your drive to do all of that. I’m happy I could auto correct your thoughts as well. Many thanks for the encouragement and best of luck to you in everything.

  8. Hey Jackie,
    I loved reading your blog. I also do believe that life is about perspective. I believe that life is 20% of what happens to you and 80% of how you react to it. Having the mindset that life is all about perspective is a freeing experience, and I have come to realize that more everyday. I like how you say that having MD doesn’t have to stop you from doing the things that you love, you may just have to do them a little different, but that’s alright. I like your outlook on life and find your post engaging and thoughtful.

    -Rolando Moran

  9. You know how much I enjoy your writing, and your perspective. This one made me tear up. I don’t think people get the million little things that make a baseball game, for example, more time-consuming and thought-consuming and therefore exhausting on multiple levels. Your post was a terrific reminder to practice patience with my son. Thanks, Jackie!

    1. Aw thanks Wendy. I can only imagine how hard it is has to be to exercise patience all the time. I lose patience with myself and get extremely frustrated with my body on a regular basis. Even though I know I have this and there’s nothing I can do about it, I still don’t understand why it won’t do things like other people’s…things that are so basic…so sometimes that makes me crabby. I hate that the world isn’t set up for everyone with mobility issues like it should be too. None of us should have to be the ones to compromise and struggle and just “make the best of it”. The world should be set up for us so we can have the same experience that able-bodied people get to have everyday. Ok, stepping off my ranting soap box now but I’m so glad this post resonated with you!

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