National Friendship Day

Good friendsThe main purpose of this blog is not just to tell my story, but to share whatever inspires me; be that a quote, another blog, a person, or something I heard. Today, in honor of National Friendship Day, I wanted to take a moment to thank one of the largest sources of inspiration in my life: my friends. They lead by example and show me how to be a better person. They are the support beams of my very being. They make me laugh when I want to cry. They tell me what I need to hear, even if I’m not ready to hear it yet.

Everyday should be National Friendship Day really because we should be constantly striving to thank those we are lucky to have as friends in our lives; to constantly show them our appreciation. So I say a heartfelt and sincere thank you to all my wonderful friends. Thank you for all you do. Thank you for being there, and thank you for simply being. <3

The Weight of It All

This is a photo from college that shows you just how skinny I used to be.

A very very skinny me in my college days

I had a rather sobering realization a couple of weeks ago. I’ve always been slender, at some point too slender to the point I would get teased and called anorexic (which I think the photo pretty well demonstrates). I never really thought much about how my weight worked in conjunction with my MD, other than I knew it contributed to my being skinny in the first place.

I’m still slender but I’m at the highest weight I’ve ever been at. I’m happy with the way I look. The problem is these extra 15 – 20 lbs mean that’s an extra 15 – 20 lbs I have to try and lift off the couch or get out of the car. That’s an extra 15 – 20 lbs I have to try lift off the ground (or have someone else help with) if I fall and my arms are affected by my disability as much as my legs are so they’re just not as able to do what I need them to be able to do as they were when I was younger.

I pretty much can’t gain anymore weight and I definitely can never let myself get overweight. If I do, I may become completely immobile, never to get off the couch again. It’s a scary thought and something that honestly never occurred to me until the light bulb went off a few weeks ago.

I eat much healthier than I used to. I cut way back on fast food (which used to make up my meal count almost daily). I stopped drinking soda completely for a long time. I’ve since let myself cheat on that one a little bit more though. I eat veggies and fruit and I take vitamins. I’m definitely not as active though. When I was younger I was outside quite a bit. Nowadays I sit at a desk for most of the day and am sometimes too lazy to even get out of my chair, especially in the summer heat. I don’t go on walks like I used to. I’ve been trying to get back into yoga because I used to do that regularly also.

The reality is, myself and my body aren’t as young as they used to be and neither is my metabolism. I can’t eat horribly every day and get little exercise and expect that it’s not going to affect me. I have to work that much harder now to make sure I don’t gain more weight than my body and limited physical strength can handle.

It’s been on my mind quite a bit lately. I want to be healthy and maintain my current weight but I don’t want it to have to be this big stressful thing either. I want to be able to have a soda sometimes. I want to be able to have a giant bean burrito from Miguel’s Jr. or Del Taco on the weekends. But more importantly, I want to be able to just give my body a break and sit on the couch and binge watch TV some days. I don’t want to have to exercise everyday or walk in the heat. I don’t want to push myself so hard that then I fall and end up having to rest for days afterwards anyway.

It’s really hard to find a balance and I don’t want to be inflicting so much pressure on myself that I make myself miserable. But at the end of the day, it’s a balance I have to find and I have faith it’s a balance I will find. My body doesn’t have much choice. If I still want to be able to enjoy the almost 100% independent life I am able to lead, it’s something I’m just going to have to figure out. Come on body…we can do this! <3

The ADA Celebrates 25 Years

I got an email from the Muscular Dystrophy Association that pointed out a very poignant fact…July 26th will be the 25th anniversary of the passing of the Americans with Disabilities Act (ADA). It’s certainly a hugely celebratory occasion, not just for people with disabilities, but for people in general; for the equality of everyone.

But I was also taken aback when I read the email. In the grand scheme of things, 25 years was not that long ago. Not only was I born 25 years ago, I was already in school. 25 years is only two and a half decades ago. The years of Mad Men and Woodstock were long passed. For it to have taken that long for people with disabilities (disabilities they had no choice in) to receive equal protection under the law is more than a little unnerving. To think that if I had entered the workplace 30 years ago I wouldn’t have been protected against discrimination. The building wouldn’t have been required to have an elevator for me to be able to go from floor to floor. Employers could have treated me like garbage and I wouldn’t have had any legal protection to help me.

The important thing though is that it did in fact pass. So this weekend, I want to celebrate a wonderful bill that changed the lives of so many wonderful Americans, many of whom I am lucky enough to know and talk to thanks to this blog. I celebrate a bill that’s given me and countless others the accommodation, the protection, and the right to equal treatment that we deserve as human beings. Happy birthday ADA! “Celebrating 25 years of removing barriers and empowering people.”

To read more about the ADA, check out this link

7 Tips for Travelers With Disabilities

Jackie:

This is from my new blog project I started recently and am very excited about! Blogging about accessible travel based on my own travel adventures from everything to Disneyland and various spots all over the globe. More importantly, this is a great article that was published by a great couple from MDA that I’ve worked on a couple pieces with and were nice enough to interview me for this article they wrote.

Originally posted on The Accessible Traveler:

Accessible Travel Tips Articke

I’ve been lucky enough to write a few things for the Muscular Dystrophy Association and even luckier to have them interview me for a few pieces that have come out this month. This article was published on a PBS affiliate site called NextAvenue and has some great tips for travelers with disabilities, from planning to where to find accessible tours for places like Machu Picchu (I admittedly had no idea that such a thing existed!). It’s a great read for anyone who wants to travel but maybe has been afraid to because of their disability and it also offers great insight and tips for people who might be planning a trip or traveling soon.

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Daily Inspiration: “Tig”

TIG_Keyart

I watched a Netflix documentary this weekend called “Tig” about female comedian Tig Notaro (who I admittedly had never heard of before I saw her on Jimmy Fallon last week). I’ve been feeling a lot lately like I can’t do anything right. Like I’m the world’s most giant moron (or “Mormon” as auto correct rather hilariously changed moron to in a text to my friend) or I’m just not doing enough. I’m not exercising enough. I’m not putting myself out there enough. I’m not traveling enough. I’m not blogging enough. I’m not enoughing enough. The list goes on and on. It’s been a bit of a pit of self shame to say the least.

I won’t give you the entire synopsis of “Tig” because Netflix can do that for you with a convenient mouse over of the title, but I will give you the list of things that she had to deal with just in a couple years’ time.

  • She got really sick with a nasty and life threatening intestinal infection known as C-Diff
  • She went through a breakup
  • Her mom died suddenly after a fall
  • She was diagnosed with breast cancer
  • She had to have a bilateral mastectomy from that cancer
  • She tried to have a child via a surrogate after her cancer remission and the one viable egg that was implanted in the surrogate wouldn’t take

So needless to say, she was dealt a lot of really crappy shit. Even just one of those would be hard enough for a person to endure but consecutively in a few years time? I don’t know how she made it through. But she did. She made one of her most revolutionary stand up appearances where she talked about every single one of those things and it became her best selling comedy album. She could have given up at any time. I know I wouldn’t have blamed her for it. But she didn’t give up. She fought and fought. Today, she’s happily engaged, still doing her stand-up, and is working towards adopting a baby with her fiance.

I get defeated when I accidentally put bleach instead of fabric softener in a colored load (yes, I did in fact do that today) and then proceed to take a giant sprawling fall across the tile floor in that same laundry room. This is supposed to be the year of acceptance as I so honorably proclaimed at the beginning of the year but I think that’s actually been one of the hardest things for me this year. I have a really hard time dealing with the ebbs and flows that come up in life sometimes. I want to just have 2 consecutive days where nothing goes wrong or where I don’t screw something up, but I know that’s just not realistic. I’ve done a lot of reflecting on past years and this year really isn’t any different. I had my car accident last year. I had a medical scare the year before that. There are always going to be bumps in the road. For people like Tig, sometimes there are going to be giant potholes and entire portions of the road missing you have to drive around. My minor little hiccups really are nothing in the big scheme of things. They’re just a part of life. They just happen and that’s ok. And I’m not a moron. I just have to remind myself it’s not the end of the world and that nothing is permanent. This too shall pass…and it always does.

Book Recommendation: Twelve Steps to a Compassionate Life

Karen ArmstrongAs an avid inspiration junkie, but also an avid reader, I decided to start a new segment on the blog. Welcome to my very first book recommendation! I heard Karen Armstrong speak on a podcast back in December on the idea of compassion in relation to all of the religions of the world. I immediately went to the Kindle store and bought her book Twelve Steps to a Compassionate Life (yes, it’s taken me this long to complete this book but not from a lack of trying!). It’s an absolutely fantastic guide on not just how to live compassionately but also on the specifics of what each religion contributes to the idea of compassion and what each can teach us. I learned so much and now feel much better equipped to approach the world with compassion (something I know I have room for great improvement on). Happy reading!

Putting the Life in Living

What does living life mean? Does it mean having plans every day of the weekend? Does it mean listening to all those inspirational quotes that tell you to dream big and then do whatever you have to do to achieve them? To try be successful and to take risks? To always be pushing yourself?

I honestly have no idea what it means for me personally. Despite knowing that “should” is a word that needs to be thrown out the window and has no place in our personal dictionary, I still have the nagging thought in my brain sometimes that maybe I’m not doing all that I should do. I’m perfectly happy to do a lot of things on my own but maybe I shouldn’t be so content with that. Maybe I’m not putting myself out there enough. Maybe I shouldn’t be content to sit at home and watch Netflix instead of going out. Maybe I’m missing out. Maybe I should be spending more time outdoors. Maybe I should exercise more. Maybe I’m supposed to be pushing myself more or taking more risks. Maybe I’m not ambitious enough.

I like to think that living life is something unique to each of us. Living life is whatever we want to define it as, not how what we see on social media defines what it as, or even what inspirational quotes define it as (and we all know I love a good inspirational quote). There’s no perfect mold for life. No specific set of circumstances it should have to be considered “fully lived”. It sounds morbid, but maybe it should just be that if for whatever reason, we died tomorrow, we would be happy with what we did on earth. I feel like my requirements are pretty short. I want to travel to as many places as I can, even if that’s only a couple of places. I want to have good memories with friends I will look back on that will always make me smile. I want to feel like I’ve nourished my mind and soul and expanded my knowledge. Yeah sometimes I wish I had plans every day of the week or weekend sometimes and sometimes I think there’s something wrong with me that I don’t, but I don’t think in the grand scheme of things that’s what makes a life full. I think just enjoying every moment we can and laughing as much as we can is what makes it full.

Daily Inspiration: Matthew Hussey

In the past few years, I’ve purposely stayed away from any kind of dating self-help, whether it be videos, blogs, books or whatever. I’ve just wanted to focus on being happy with me and nourishing my soul and not read some book on how I can be a better dater or get him to call the next day.

The only exception to that is a guy named Matthew Hussey. Yes he’s insanely good looking and has a British accent, but he actually gives some really good advice. I don’t like all of the pushing his books and his retreat and all his other money-making agendas on his website but I suppose he’s a rather smart business man for doing so. I like that he doesn’t just offer women advice on dating; he offers advice on embracing who you are and loving yourself too. This video below is the perfect example of that. It’s long but it’s well worth the 22 minutes.

It really really resonated with me as someone with a disability and a limp that I always perceive as an imperfection. I think he’s spot on when he says that it’s not being perfect that makes people attractive, it’s being imperfect but being resilient and still fun loving and courageous despite all of those imperfections. I love when he talks about not justifying yourself to other people too. I constantly feel like I’m having to justify my disability to people, especially when it comes to dating. It hasn’t been until very recently that I’ve loved myself enough to say, “You know what? I don’t have to justify this to you.” I don’t have to try to make my MD sound “cool”, or minimize it just to get someone to like me or want to date me. If you don’t like it…there’s the door. Here’s to all of our imperfections…our pimp limps…and not justifying any of it to anyone. Here’s to our courage!

 

Jackie and the Search for Happiness

HectorI watched a movie called Hector and the Search for Happiness over the weekend and in it was a line that really stood out for me. Hector (the lead character as demonstrated by the movie’s title) asks a Buddhist monk how he’s happy with all that he’s been through in his life. The monk replies emphatically, “I’m happy because of all I’ve been through!”

What a simple yet profound thing. I think a lot of us, myself included, think that happiness is never going through hard times. Happiness means things never going wrong or not struggling. But in its true essence, happiness is actually a result of hard times, the result of things going wrong and is what comes out of struggle. To be able to overcome any odds and still be able to greet the world with an open heart and an open mind. If we didn’t have all of those, how would we be able to recognize joy and let that happiness fill us up?

I recently started meditating. I know, Buddhism-loving me had never quite been able to bring myself to meditate even though I’m probably one of the people who could benefit from it the most. I have a lot of trouble shutting my mind off. I live in my head sometimes and it’s not always a pretty place and it keeps me from enjoying the moment. I lose sleep stressing out about things. So to be able to put myself back in the present and meditate on positive things like compassion and self-acceptance really helps a great deal. I’ve only started with about 5 minutes a day but I think it’s really helping. Like anything. it’s not a fix all but it’s a great link in the happiness chain.

I actually meditated on this very quote the other night too. I’m not happy in spite of muscular dystrophy. I’m not happy in spite of seeming to get myself into the most ridiculous situations or making stupid mistakes sometimes. I’m happy because of all of those. They’ve shaped who I am today and they’ve allowed me to appreciate all the good I have around me. Thanks Hector.

Differently Abled and the Media

MV5BMTAwMTU4MDA3NDNeQTJeQWpwZ15BbWU4MDk4NTMxNTIx._V1_SX640_SY720_I think I touched on this particular topic in a blog a while back (once you turn a certain age, I’m telling you, things just start failing and what used to be an awesome memory is one of those things for me). So I watched The Theory of Everything this weekend. If you haven’t seen it, I highly recommend it. It’s based on the book by Stephen Hawking’s wife and tells of their relationship and his initial diagnosis with ALS as a young man. Eddie Redmayne won an Oscar for his performance in the film, something that’s garnered him a lot of praise, but also a lot of criticism. Hollywood is notorious for not representing minorities, women, gay people, transgender people and the like on a large enough scale. But it’s especially known for not representing people with disabilities. When they are represented, the roles are often played by able bodied people. I’ve mentioned Artie from Glee. This was the first time I ever saw a character in a wheelchair represented on a television show. And even though the actor who played him did a great job, he wasn’t in a wheelchair himself.

So this brings me to what I’ve seen to be the two schools of thought on the topic of differently-abled people in the media and actors like Eddie winning awards for representing them. One side thinks that it’s wrong for people who are able-bodied to be playing these roles and winning awards for it. The other is that it’s good that disabilities are finally being represented in movies and television and that these actors should be applauded for playing such roles.

I kind of fall somewhere in the middle. I completely, 100% agree that people will disabilities need to represented more in every form of media, especially TV and movies. Like with the case of Glee, I think that part should have easily gone to someone who was actually in a wheelchair. But when it comes to Eddie Redmayne’s part, I don’t think it’s so simple to say someone with ALS should have played him. He had to show the progression of Stephen’s ALS from being able to walk, to only being able to talk using a computer. So I understand why they cast him for the role as they did. He also did an amazing job and spent a lot of time with people who actually had ALS in order to play the role and represent the disease in the way it truly deserved. I also agree with the second school of thought too. I think that just the fact that movies are being made about people with disabilities and are garnering so much attention is hugely important. It’s unfortunate, but the road to full understanding and acceptance can be a long one. It takes small gradual changes sometimes. The Americans with Disabilities Act was enacted appallingly late in history and before it, people with disabilities were seen as second class citizens or a scourge on society and were given zero protection under the law. So yes, maybe having able-bodied actors play people with disabilities isn’t a huge leap of progress but it’s certainly a big step on the road to progress and you have to start somewhere. I have a feeling there were many people who didn’t even really understand what ALS was or its effects on the body before they saw The Theory of Everything even though it’s a disease that’s been known about for a long time. Bringing up the topic leads to a discussion and a discussion leads to questions and curiosity. Those two things lead to knowledge which then can lead to understanding. And the fact that awards are being given to the people in these roles is also extremely important. It brings even more attention to the film/show and thus, to the subject. If screenwriters and directors and movie producers are seeing how successful a film can be that focuses around someone with a disability, then they’re going to be a lot more likely to make another one. Maybe it starts with ALS, and then it’ll be MD or autism or multiple sclerosis.

I think there just needs to a balance. When possible, disabled actors should most definitely be hired. They’ve lived it so why not? But I also think we need to recognize the importance that movies or TV shows are being made about people with disabilities to begin with. I certainly look forward to the day when I see someone who walks just like me or has the exact same struggles represented on a TV show or in a movie. Seeing all these films and shows coming out now, I have a lot more hope that that day will come sooner rather than later.