#noregrets

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Before I explain the picture you see to your left, I have to give credit for my blog title to the awesome tour operator for 18-35 year olds…Contiki.

As some people may know already because I blasted it all over social media…I was in a pretty bad car accident yesterday. I was on my way to work when a guy decided to make an illegal left turn across 3 lanes of traffic and a double yellow line and smashed into me…in an Escalade. My little car was absolutely no match. You always see these things on TV and hear about them but it’s such a surreal experience when it happens to you. I didn’t see my life flash before my eyes, it just happened so fast. As I sat there after the airbags deployed, unable to move from the jolt and whiplash I took deep breaths and tried to absorb what had happened before calling 911.

I spent a good portion of the day in the ER yesterday (major shout out to the staff at the UCI Emergency Room…amazing people) in a neck brace. My dad came from home to be with me while my poor mom was flying back from another state after taking care of her mom for 2 weeks. I hated my poor dad having to see me in the ER with a neck brace on, not knowing how badly I’d been hurt and my mom on a flight wondering the same thing. I know that’s something no parent probably ever wants to see or feel.

It wasn’t until after I was released from the ER and went back to get my stuff out of the car that I full realized just how bad the accident was, and just how lucky I was that I wasn’t hurt worse. My car didn’t have side airbags so if he had hit me on the passenger window side or on my side, I may not have fared so well. It’s scary anyway to get into any kind of accident but when you have MD, it can be even scarier. My body is automatically impacted more by any trauma it encounters. When the paramedics were trying to get me out of the car it was really hard because I couldn’t move my head from the pain but I couldn’t move my body well in general because of my MD. A lot of people may not know that people with MD run the risk of malignant hyperthermia (which can be fatal) from regular anesthesia too so I told every since person I encountered that day about it.

It sounds totally cliche but now that a day has passed I’ve really been able to reflect on everything and I feel so incredibly lucky. I remember lying on the bed in my room at the ER and thinking “I need to get back to Ireland. I need to travel” and that’s kind of just scraping the surface. Life is really short. I got up that day expecting it to be like any other day. I was gonna take my 15 minute drive to work and then spend my usual 8 hours there, run some errands and come back home. It’s amazing that in an instant, that can all change.

It’s made me so extremely grateful for all of the amazing people in my life. I’ve gotten such an outpouring of love (and two flower deliveries) from so many people, it’s made me cry on more than one occasion. I can’t even put into words how awesome my parents are either. From my dad sitting with me in the ER and cleaning out all the crap I’d accumulated in my car, to my mom coming straight from a plane to my house to stay with me overnight and take care of me today. I’m really just so incredibly lucky.

I hope that if I take anything away from this it’s to treat everyday as a miracle. Never be afraid to do something you want to do. Tell everyone close to you you love them. Leave nothing unsaid. #noregrets

 

Putting the “i” in Friend

I’ve been struggling lately with some of the friendships in my life. As someone with a disability who let that mean I wasn’t as worthy as other people, I often clung to the idea I had to have a lot of friends. That having a lot of friends automatically made me “cool” or valuable. But as I get older, I realize it’s much more about quality versus quantity and I’m just not sure if the quality is there anymore with some people, or maybe even that it ever really was.

But then I go back to that age-old question I always pose…where’s the boundary between expectations and getting what you need? Part of me thinks I’m wrong for expecting anything out of people or out of my friends. That if I just let those go then I would be much happier. But the other part of me thinks there’s nothing wrong with wanting a friendship to be a two way street. I get so exhausted sometimes from putting myself out there and trying to be a good friend. I don’t mean that to sound like I’m the greatest friend ever because I certainly have room for improvement too. But sometimes I can literally just feel everything kind of piling on top of me because I’m texting this person, trying to make plans with this one or trying to include this one. Then I end up not getting a response, the person flakes out and the friend doesn’t make any attempt to include me. I don’t think anyone really likes to feel like they come in second or don’t mean as much to the other person as the other person does to them. It honestly makes me feel like an idiot sometimes.

I try to remember what Buddhism or the Dalai Lama would say about compassion. You’re supposed to give it without getting anything in return. It’s not supposed to be an “I’ll be there for you as a friend and be compassionate but only if you give me that in return.” Sometimes though, I just feel like I empty out my compassion tank so I don’t lose a friend or hurt anyone’s feelings.

I know what I do feel though. I feel extremely lucky for those friends I do have that put in the effort. Who send me cards and flowers just to show me they care. Who call or text to check in. Who are there at the drop of a hat when I need to talk, even if they don’t live anywhere near me. Who just…care and show that they do. The rest I think I’ll figure out with time but at least I know I have some great people by my side while I do.

I Don’t Want to be Pretty

I had a thought just now. What if, instead of wanting to be “pretty” we wanted to be smart? We wanted to be compassionate? We wanted to improve the lives of ourselves and of others? What if, instead of spending thousands of dollars on makeup, clothes and hair to make ourselves look like what we think society wants us to look like…we spend the money on getting clean water for towns in Africa? We donated to charities helping to find a cure for AIDS, cancer and muscular dystrophy? What if we spent it on travelling the world and learning about our fellow human beings or even just doing simple things like having fun with our friends? What if, instead of trying to be “normal” or be like everyone else, we embraced our differences and our uniqueness? What if we told ourselves that our flaws are ok? What if we were ok with our situation, no matter how different from other people’s it might be.

I’ve been thinking a lot lately about the amount of money I spend on makeup, skin products, hair products…all things to try and make myself look “better.” Don’t get me wrong, I don’t think there’s anything wrong with wanting to look your best. I don’t think I’ll ever stop wearing makeup completely or liking clothes (though sometimes I do get so overwhelmed with it I just want to throw everything away and be rid of it). It’s finding that line and ensuring we’re not doing all of the above in an attempt to be considered valuable by the world. It shouldn’t be a mask to hide who we really are or because we think we’re not enough. I’ve said many times before how living with a disability has made me try and overcompensate by like 1,000% to look a certain way to everyone else. I’ve used makeup and clothes to try and portray an image of myself to the world…the image that I’m not disabled; that I’m just like everyone else. When the reality is, I’m not. I have something that makes me different. I have something that, on the outside, makes me “imperfect.” And you know what? On top of that, I don’t have clear skin, I have bloodshot eyes because they don’t close all the way at night when I sleep (because I have MD), I don’t have the body of a model. But you know what else? That’s ok. I know I’m pretty but if pretty was a person I could talk to I would say, “You know what, I’m ok with not having you.” Looks fade and if you define yourself by those and spend your life trying to look perfect or be considered beautiful, you’ll find yourself looking in the mirror years down the line realizing you haven’t really lived. Finding that the only beauty you ever really needed to find was already there…inside of you.

And wherever I’ve just said “you” or “we” here, I mean myself. I’m the one who needs to listen to my own words more than anyone and constantly remind myself true beauty comes from within, disability or not. I may not totally believe it right now but really, no, I don’t want to be pretty. I want to be a lot more than that.

An Open Letter to the Word “Should”

Dear “Should:”

I’ve decided this relationship is no longer working for me. It’s not you, it’s me. I’ve decided I no longer want to live my life under your boundaries. I no longer want my worth to be tied to you. Other people think I need to stay with you…fit into this societal box we’re all supposed to fit into. You think I need to be in a relationship. That the path of my life has to lead to marriage and kids. But I hate to inform you that I don’t think any of those are really in the cards for me. Not now and maybe not ever. You keep wanting to put all these restrictions on me and make me feel bad about myself. Telling me I need to look and act a certain way. So that’s it, I’m ending things for good. I’m going to live my life for me and no one else…including you. I wish I could say it’s been fun, but really it just hasn’t. I’m returning all of your things and baggage. Goodbye should…have a nice life.

Sincerely,

Jackie

The Up and Down

I’ve been struggling lately and I don’t even really know why. I’m easily irritated, emotional. I almost cried because of something a coworker said to me today. I’ll feel sad and completely hopeless, then the next day I’ll be totally fine. A lot of the irritability has been directed at myself. It seems like lately I’ve been dropping things more often, spilling things, ruining clothes and things around the house. You might read that and think, “Well of course, that’s a normal part of life.” But when you have a disability, things like that can seem like a huge deal…especially dropping things. If you’ve never seen someone with MD try to pick something off the ground, we can’t do it like a person with a normal amount of physical strength. I can’t squat…at all. So I have to use my back and all the leg strength I have to pick something off of the ground. And sometimes, it hurts. It seems to hurt more and more as I get older and my back starts to rebel against me. So the more I drop things, the more angry I get because I know what it does to my body. I think I feel like as my body fails me, that makes me feel like a failure even though I know it’s not my fault that my body is the way it is.

I’ve been feeling lonely more than usual too. Not in the I don’t have a relationship sense but more in the friendship sense. I have a lot of amazing friends and I don’t want to discount them here at all, but lately I’ve been having weekends where I’ve done nothing and I look down at my phone and realize I don’t have anyone to really just call and say “hey, let’s go do something” because everyone else has a significant other that they’re doing stuff with. There’s really no one to blame for that than me either because I’m not out there trying to meet new people.

The same goes for dating. I signed back up for online dating and regretted it almost immediately. I wish I could figure out what I want but the truth is I just have no idea (so men, here’s a woman openly admitting that :) ). I would rather spend the weekend alone than have a date in all honesty. Dates feel a lot like job interviews for me and I would just rather relax or spend time on myself. I feel like that has to mean I don’t really want a relationship. I feel like I do but I’m not really willing to put in the work for it. It would be one thing if I met a cool guy out in the world or through a friend or something like that but online dating is just a different ball game for me. I know that’s the way so many people meet these days and more power to all of you that do it, but every time I sign back up, something inside me just ends up hating the idea vehemently. I don’t know if I’m scared, if I have walls up or what. I’m just completely clueless about why I feel the way I do and I might end up 55 and single still because of it.

A lot of things are going really well though. I love my new job and my boss is literally the best boss anyone could have (though she’ll be leaving in a few months which is a huge bummer). I’m reminded on a daily basis what awesome people I work with. I’m sure all the other stuff will pass; it’s just weird. Life is full of ups and downs but it feels like I’ve made some really good ups, only to have some big downs again. I feel like with all of the inspirational stuff I read and the work I try to do on myself, I should be more on my way to be able to deal with the curve balls that come up in life.

I guess we have Exhibit A in Jackie being too hard on herself again. Damn self-compassion that keeps eluding me.

The Health Factor

I just got back from a raw vegan cooking class (which turned out to be more of a demonstration that involved food being served). It was all about healthy eating and getting the most out of your food (aka vegetables). It was interesting and for the most part, the food wasn’t bad but it got me thinking…

Health and especially healthy eating was really never high up on the priority list for me. In the past few years I’ve made a lot of improvements and I definitely eat much healthier now than I ever used to. But the basis for my not caring what I ate for so many years stemmed from my defeatist mentality. Why bother taking care of my body that didn’t really work so well to begin with? Why did it matter what I was putting into it when I was already weak (and could get weaker) to begin with?

I can’t say I’ve totally shaken that mentality still. Though I pay much more attention to what I put in my body and I know that weight gain is always dangerous for someone who falls all the time and has enough trouble getting up as it is, I still can’t say I fully see the point in going through leaps and bounds to try and stay healthy. At the end of the day, I’ll always be a girl living with MD and no amount of spinach or kale is going to change that. I really am in OK health overall anyway. Knock on wood, I haven’t gotten sick in almost a year, even through several outbreaks of the flu and colds at work. Everything else seems to be operating a-ok.

The same sentiment applies for working out. I like to walk and I like to do yoga but it seems like every time I start to get in a routine with it, I fall and it completely kills my confidence and desire to keep up with being active in any real way. I’m just never going to be able to do it to the extent other people can…which is maybe why I have to be even more careful about what I eat.

This next part is going to sound extremely morbid but I just don’t want to live that long either. I don’t mean that in a depressed, “I have nothing to live for” kind of way, I just don’t aspire to live to a ripe old age because of my disability. I don’t know what kind of physical shape I’m going to be in even in twenty years….I can’t even begin to predict what the case will be fifty years from now. Obviously I’m young and single so it’s easy for me to say this now but it certainly ties in with how I take care of my body. I would rather just live for the time I am on this Earth (and have Del Taco or ice cream sometimes) rather than obsess, stress and spend a ton of money and time making food that’s going to help me live longer. That mentality might eventually change for me but right now, that’s how I feel.

It’s so overwhelming sometimes…eat this, don’t eat that, do this workout, you should be drinking this many glasses of water. Sometimes I just want to yell at the world to leave me alone, that I have a disability and all that stuff isn’t so easily applied to me. It’s hard to find a balance when you’re born with a different starting point than everyone else. I’m pretty sure that’s something Dr. Oz or any fad food trends haven’t kept in mind…

And the Award Goes To…

I was just reading an article with thoughts on Jared Leto’s win at the Oscar’s last night for Dallas Buyers Club. To put it in a nutshell, there’s been some backlash from the transgender community. I won’t go into my opinion on all of that other than to say I can certainly understand the argument. It got me thinking about the representation of disabled people in movies and television though. More specifically, the lack of that representation.

I grew up never seeing a single person on any of the shows or movies I watched who looked like me or shared my specific struggles. If you’ve ever heard of Degrassi: The Next Generation, it’s a Canadian teen show (that I have been admittedly been binge watching again on Amazon). Many people know it as the show that made Drake (aka Aubrey Graham) famous way before he ever hit a stage. Along with a girl in a wheelchair that was in a few episodes and Drake’s character Jimmy Brooks who gets shot and ends up in a wheelchair, the show was the only one I saw that ever represented someone with a disability, and it was on when I was like 20. Later, Glee would come along and Artie was in a wheelchair. It’s sad that there have been this few of roles representing myself and other people like me.

You’ll notice that two of the examples I cited above are men too. There have been almost no examples of disabled women on screen and I’ve certainly never seen anyone with muscular dystrophy represented. I’ve never seen a girl with a limp like me on an MTV Original Series. I’ve just seen an endless parade of “perfect” looking girls with perfect bodies, perfect hair, perfect skin and perfect personalities. No wonder those of us who are differently-abled grow up feeling alone and abnormal. There’s no representation in any of our entertainment mediums to reinforce that we are normal. We have to spend years trying to mentally build ourselves up while trying to break down all the barriers and walls that those entertainment mediums have helped create (on top of the already existing societal pressures of looking “attractive” or being valuable).

Imagine if an Oscar nominated or Oscar-winning movie starred someone with a physical disability? What if Best Actress went to someone with muscular dystrophy? I challenge you script writers, TV writers, writers of all kind…it’s time to represent all of society, not just parts of it. We’ve certainly come a long way but when I think of that shy, skinny little girl, sitting on her window seat in her bedroom, wishing she could be like all of the other girls or knowing someone was out there that was just like her and the countless other girls doing the same thing, I can’t help but think of how much their lives could be changed…could be bettered…if they had more positive role models just like them to look up to.