Down the Tunnel

There seems to always come a day when you start to finally accept your disability. When you start to accept yourself and focus on the positive. And then you find out you have a vision threatening ulcer on each of your eyes why? Because you can’t close your eyes fully every night because you have muscular dystrophy. Just when you think you’re healthy and don’t have to go to the doctor for the 6th time since January, your giant happy balloon gets burst.

Days like this you just can’t muster the positivity. I got some great news yesterday I was going to share but I was only allowed to be happy for one day before that had to come crashing down. I know this is the ebb and flow of life…for everyone…but sometimes I’m just tired of dealing with it. Why can I not have a week where I don’t have to assert my disability or convince someone I have one  or conversely be reminded I have one? Why can’t I make it a few months without some weird health issue? I can sit here and come up with some BS about how I’m going to try find the positive in all this but I would be lying to you and to myself. It’s always going to be one thing or another. This will hopefully go away and then something else will come up. I can’t even let myself think about what might happen if the treatment doesn’t work.

I’m reminded now why I don’t date really anymore. I can’t even deal with this myself, how can I expect someone else to? On the same note, because I’m constantly having to deal with it in some way or another, I don’t have the time or energy to worry about someone else’s feelings or needs in addition to my own. Having a disability is a full time job (and I already have 2 jobs).

I feel bad even complaining about this because I know some of you have much more severe issues to deal with than I do but I just can’t get out of my misery today. I’m tired and drained. It’s hard to accept something that keeps insisting on challenging you and bringing you down. It isn’t my fault I have my MD so why am I having to deal with things that come from it (and have to pay for them to boot?). My dad reminded me that this isn’t a punishment but honestly, sometimes my whole life feels like a punishment. That or someone up there has a cruel sense of humor (and I’m sorry don’t give me that, “God doesn’t give us anything we can’t handle” thing right now). Tomorrow is a new day and maybe I’ll start feeling like myself again. Right now, it’s just me and my bed and a lot of sleep I hope.

Taking a Stand

This blog is going to be a little disjointed. I’m going to start with what I wrote initially on my phone after a poor start to an Amtrak ride up from San Diego today. Then I’m going to finish with an amazingly rewarding thing I did.

Part 1

I’m not sure that I will ever get used to being questioned about my disability. This is a fact that makes me really sad. I know I’ve blogged about it many times but that just goes to show you how many times it happens to me. And I don’t even blog about every occurrence. The thing I think people don’t understand is when you’re questioning if I actually have a disability you’re not just questioning the legitimacy of my claim of being disabled, you’re questioning my legitimacy as a human being. You’re saying I am a lazy/dishonest/terrible person because I would make up a disability that I don’t have just to avoid stairs at Disneyland or to sit on the first floor of the train. It’s unfortunate that I have to suffer as a result of there being such horrible people out here that actually would do that. There’s no perfect solution for it, I get that. If you go too far one way and never question anyone then people will abuse it (as is what happened a Disneyland with horrible people from my area hiring disabled people to go with them so they could avoid the lines). If you ask too many people you get into discrimination territory. I just wish people could feel what I feel every time I have to justify myself to a compete stranger and maybe they would rethink their approach or understand just a tiny bit. I’m stuck in between these two worlds. I don’t fully fit in in the disabled community because I don’t have a wheelchair or a cane but I don’t fit in with able bodied people because I have a limp and fall and can’t do things that most able bodied people can.

Sometimes I just want to say “fuck you” to the whole “everyone is going through something
or “people just don’t know any better” thing. Sometimes I just want to stand on top of the globe and shout “hi world, I have muscular dystrophy and you can’t always tell right away so leave me alone!” Maybe I should just start wearing a t shirt that says that all the time. Screw fashion. Sometimes I just want to get a cane just so people get off my back. But I don’t need one and then I would just be helping reinforce the problem of people not understanding that disabilities come in all forms and I refuse to do that.

I know this is something I just need to accept because it’s never going to change but it infuriates me I have to learn to accept something that’s a result of other people’s ignorance. They’re the problem, not my disability.

Part 2

On that note, one of those ignorant people was sitting behind me on the train (on the disabled only level). He had been there since we left the station in San Diego and since he snuck onto the train ahead of everyone else that patiently waited in line. The conductor asked him if he had a disability and he said no. So the conductor asked him nicely to move upstairs. I thought he had until about 3 stops later I heard his phone go off again. It’s one thing when you don’t realize that the 1st floor is for disabled people (despite there being signs everywhere), but it’s a whole different ball game when you do and choose to ignore it. So I turned around, tapped him on the knee and this is how that convo went:

Me: Didn’t the conductor ask you about 3 stops ago to go upstairs because you’re not disabled?

Dude with Bob’s Big Boy Hair: Why, does someone need my seat?

Me: It doesn’t matter. We don’t all the luxury of being able to go up the stairs so that’s really fucked up that you’re still sitting down here.

Dude with Bob’s Big Boy Hair: Well I went upstairs and there weren’t any seats

Me: No you didn’t and look at all these other people standing around not taking up seats because it’s a full train. I am not going to be called out for not having a disability when I do and you’re still sitting down here.

Shortly thereafter, as said dude was packing up his stuff the conductor came along and saw him still sitting there so he promptly got his ignorant butt out of the seat and stood up. I seriously have never felt so invigorated in my life. I really had to pump myself to do it but I didn’t just do it for myself. What got me to finally do it was thinking of everyone who reads this blog, all the new friends I’ve made that have disabilities and how many times they’ve had to face a taken handicapped spot or the like by someone who didn’t really need it. Every time someone just didn’t care that a disabled person needed to use something. Blogging is great but if I can’t take this activism out in the world, then what’s the point? Sitting at home writing about change is great but I need to be that change too. I’ve watched that “What Would You Do?” show so many times, knowing I would probably be the person who was too scared to say something to whoever the wrong-doer was. But today I changed that, and I can feel it. It wasn’t just about standing up for something that wasn’t right, it was about how much I’ve changed and grown as a person. Not only was this guy extremely good looking but I did not do what I did quietly so people were staring at me and were very clearly uncomfortable. But you know what? I didn’t care!! Not at all. For the first time in I think my entire life, I stopped caring what some cute guy or a train full of strangers thought! That guy probably went and told all his friends about the crazy bitch who was in front of him that told him to move and you know what? That’s great! You go right ahead and tell them that. Maybe I am a bitch but if that’s what being a bitch means, I’ll gladly take that title.

I really do hope that my calling him out raised an iota of awareness and maybe he’ll think about not doing that again. If not, that’s sadly just kind of par for the course but at least I said my piece and dammit if I don’t feel amazing after doing it. How have I not been assertive my whole life? Confrontation is totally not that bad! Ok I’m getting ahead of myself but what started as a poopy train ride ended in the most satisfying one I’ve ever taken. And it was all well worth it anyway to be able to spend Mother’s Day weekend with my amazing mom who I was proud to share this story with when I got home.

Things ‘n Things

As I was flipping through my first issue of Conde Nast Traveler (thanks American Airlines miles!), I was inspired to write about something that has nothing to do with my having a disability. I wrote a post a while back about Living on One Dollar, an extremely touching and thought-provoking documentary on Netflix. The older I get, the less attached I am with things…stuff. But I feel like watching that documentary was a really big turning point for me. My relationship with “stuff” really changed. I get rid of clothes more than I buy them. I keep a much more stringent budget so I can save money or donate it rather than spend it willy nilly on the latest online sale.

But getting back to Conde Nast…in between some great articles on travel they have some rather ridiculous columns/pages on things…sunglasses, bags, shoes. I understand how those can intertwine with travel but the things they advertise aren’t in 90% of the population’s budget. A $2000 Chanel bag is the “best” purse for airplane travel? $700 Louis Vuitton sunglasses are the latest trend in travel wear? I was so obsessed with brands and labels in college because every around me was. I just wanted to fit in and have an expensive purse or wear a pair of 7 jeans. Now I just don’t get it. There’s absolutely no need to spend that much money on things. Sure you don’t want to buy the $5 sunglasses at the cart in the mall because you need to protect your eyes but newsflash for you, that Chanel purse is made in the same place with likely the same materials as one at Target.

We live in a consumerist and capitalistic society…I get it. Our economy is basically driven by the amount of “stuff” we buy. I just wish we could all see there’s so much more to life than stuff. It’s natural to want to have nice things. To have a comfortable life. But all this overpriced superfluous stuff is just so unnecessary. It’s just a status symbol to say to the world “look how well I’m doing” or worse, “I’m doing so much better than you”. It’s using something external to try and validate something internal. Cause let’s be honest, if you didn’t really care about the label, you would buy that Target purse instead (I know, there’s brand loyalty too and blah blah blah).

And our culture totally encourages this idea that we need more “stuff”. More clothes, the newest car, the newest phone, some stupid smart watch. None of that will make you happy. Yeah sure maybe you’ll get some satisfaction for a day, maybe even weeks but then that fades and if you don’t feel happy with all of the internal “stuff”: your self worth, your inner peacefulness and happiness, no amount of Louis Vuitton sunglasses and Chanel purses are going to fix that or improve those things. Personally, when I die, I would much rather do so knowing I had at least a little bit of inner peace and happiness. That I had good memories with those I loved rather than a lot of expensive purses or sunglasses.

I know I sound very judgmental and on this particular topic and I freely admit I am. There’s just so much more to life than stuff and it makes me sad how much our society and so many of us (even me at times) put so much emphasis on meaningless things instead of meaningful experiences and memories. Life is short. Make the most of it…without that Chanel bag.

The College Years

I’m probably one of the few people who went to college that doesn’t say “oh my gosh, those were my best years.” I don’t look back on a lot of fond memories and I definitely don’t wish I was still in college (ok I did have Fridays off a lot so I do miss that occasionally :) ). I loved my program and the professors in it and I made some great friends who I’m still great friends with today (and I did have a lot of fun memories with them).

It just wasn’t a good time in my life. I was depressed. I was completely unsure of myself as a person and I hated having a disability. I looked at all the well-dressed, wealthy kids around me who were going to parties and dating boys and there I was, still perpetually behind everyone and doing none of those things. I was still the shy awkward girl. I can’t speak for everyone else but I had this idea in my head of what college was going to be like. I was going to make all these new friends and finally have a boyfriend. I was going to find a lot more like-minded people and no one was going to care how they looked. Unfortunately that’s not what I was met with and that’s not what happened. It was a very different experience and very much still a popularity contest and I just wasn’t accepting enough of myself to be able to handle it in stride (thank god I had an amazing therapist through the university who helped me a lot).

So now that I’ve said all that. I’ve moaned and whined about how overall unsatisfying my college experience was I’m going to turn the tables a bit. Maybe my college experience didn’t stack up to be what I thought it was going to be or supposed to be. Maybe I’m not going to be one those people showing up at homecoming games or alumni events. But you know what? I got an education. I was lucky enough to come from a family who could afford to send me to college (with the help of some hefty student loans I’m still paying off of course). I had parents who wanted and encouraged me to get an education. Furthermore, I was allowed  to get an education. There are women all over this planet who aren’t allowed go to school. They’re expected to work to support their family. Even worse, in places like Afghanistan, little girls are killed if they’re found attending, or even attempting to attend, school. In many countries, a woman getting an education and having her own mind and her own voice is considered a dangerous thing. Even right here in the States, there are people who can’t get an education or further it because they can’t afford it. It’s just not even an option. They don’t grow up thinking, “I’ll go to high school, then college and get a job” like so many of us do because college can’t even be a thing on their radar.

So despite my misgivings, I still can’t approach the topic with anything but complete gratitude. I received something that not everyone is able to. In many other countries, all little girls want to do is be able to learn and to sit in a classroom but because whatever obstacles that may exist, they can’t. Everyone deserves to get an education, male or female. Everyone deserves to sit in a classroom if they want to. Everyone deserves to have a voice.

Suffering

Someone asked me a really great question this week. She asked me if, when describing my MD, I ever told people I “suffered” from MD. I’ve been asked a lot of things about my MD in my short time on this Earth and I’ve thought and analyzed many many different aspects of it. This was one thing I’d never been asked or really thought about before though.

The straight up answer is no, I never use that exact word when telling people about my MD. I usually just say I have muscular dystrophy. So then I began to think about the idea of suffering. Would I qualify myself as someone who suffers from my disability? The not so straight up answer to that is the majority of the suffering I’ve endured because of it was of my own doing. The sadness, the isolation, the beating myself up for being different…that was all self-inflicted suffering. It’s a tough thing to deal with, there’s no way around that, and I was just dealing with it the only way I knew how in my youth. I hadn’t gotten to the point of being able to accept it even a little bit yet so I suffered a lot.

But in terms of the physical, I really suffer very little, and for that I’m very lucky. I have pain after I fall and my back bothers me every now and then (especially when I’ve had to bend over too much or stand for too long) but I don’t have the extreme pain other people have. I don’t have the muscle degeneration. I’m able to live pretty much fully independently. So I definitely would never say I physically suffer.

As for the emotional suffering, it all lies in perspective. How I choose to look at the cards I’ve been dealt. How I choose to respond to being different or have different abilities than other people. My mind can be own prison sometimes so it’s a matter of breaking out of that and not letting myself suffer. That’s not to say never feeling sorry for myself again or getting upset at my MD from time to time; those are just normal human emotions when it comes to this type of thing. But I don’t have to let the suffering get so great that I let my MD define my life or let my attitude tear me down.

I’m just a person living with MD and doing my best to make the most of that life. Thanks for the question Lindsay :)

Ramblings of a Wannabe Hermit

Sometimes I think I would make a good hermit…sometimes I actually think I want to be one in fact. I just get so frustrated with the state of the world. Then I remember how much I like having a regular job, having social interaction and remember I’m the last person that would ever be able to just live off the land. I just have these moments, even days sometimes, when I genuinely just want to spend time with only myself. The past couple of days have been like that. Generally I feel like my social life could be better, that I should have more friends or be doing more things but then I have days like these where there’s nothing I would rather do than sit in my room, watch Parks and Recreation on Netflix and read.

It also tends to happen when I’m going through something emotionally. I tend to just go inside myself and don’t really want to come out. I’ve been having this whole rethink lately about social media and what our society has become because of it. I’m on Facebook and Instagram and Snapchat just as much as the next person but I still manage to put my phone away for a movie, when I’m at dinner with someone or just spending time with friends. Wherever I go these days I see people interacting…with their phones and not each other. I witnessed a mom and daughter at dinner a few weeks ago and they literally said nothing to each other the entire time. They stared at their phones until their food came and then they ate until they were done. I didn’t have a cell phone when I was a kid because they weren’t invented yet and I’m actually quite thankful for that. Even with a disability, I played outside. My mom took me shopping and to lunches. My parents took me places and we had game nights. I didn’t spend most of my life staring at a screen.

I love the internet and it amazes me how far we’ve come technologically. It just makes me sad that this whole idea of social media has made us all so unsocial with the actual people in our lives. When I was growing up, we thrived off of getting attention and validation from our peers or a boy/girl…now people are thriving off getting attention and validation from their phones or a popup notification. Neither one is good of course but you get my point. I’ve found myself mindlessly scrolling through Instagram or Facebook these past few weeks and then thinking, “what am I doing?”. As bitchy or judgmental as it sounds, I just don’t care what you ate for dinner or if you’re on your way to Coachella for the third time. If you want to tell me what you did, pick up the phone even if it’s just to text me (and people who are my good friends usually do). I think it’s been a good month since I even had a phone conversation with someone other than parents.

My personal feeling is that some things should just stay private too. We’ve all gotten so used to living in this public culture where we share every detail. Look at me, I blog about a lot of intimate things here but I have to draw the line at checking into the Emergency Room on Facebook. There’s just some things that should stay sacred, that I would think people would want to keep sacred.

I’ve posted a thousand blogs about the topic and about my reasons for breaking from social media so I won’t beat the topic to a pulp. I just get so saddened with how disconnected we’ve all become. So sometimes I would just rather be alone and connect with myself since sometimes it seems like I’m the only genuinely interested in connecting with me.

The older I get, the less I want to just sit silent and not say what I think or how I feel, no matter who it might offend as evidenced by a lot of the things I’ve said here I’m sure. I think I can thank my 93 year old feisty (and completely filter-less) grandma for that. Life’s too short to spend it constantly trying get everyone to like you or say the right thing all the time (even with your closest friends) and sometimes things just need to be said. I want to be my authentic self outwardly, not just inwardly. So there, I’ve said it.

Treat Yoself

No I didn’t make a typo in that blog title. All my Parks and Rec fans will recognize it. A friend of mine posted this online today and it was a really great reminder for me (minus the lack of a comma in “Its”…I’m a proofreader, can’t turn it off!) and hopefully will be for you guys also.

Treat People

In keeping with the not taking things personally, I think this is a great reminder on the same level. We are all going through things that 99% of the people around us probably have no idea about. We have past pain, current pain, a plethora of bad experiences and who knows what else all swirling around in our brains and swimming in our pool of emotions. I think when someone is rude or treats us poorly it’s easy to forget that. We automatically assume we must have done something wrong or said something stupid. I have a person who does this on a frequent basis with me. Sometimes, not going to lie, it makes me want to cry. But I have to remind myself not to take it personally because it has nothing to do with me and everything to do with him. I think a lot of with disabilities are unfortunately really used to being teased or treated poorly and it’s hard, if not impossible, to not take that personally.

I don’t think this idea means people should be excused from treating others poorly…definitely not. Conversely, I don’t think it’s meant to say everyone else is horrible and we’re super awesome because that person treated us badly. But I think we can use the knowledge it brings for our own good. So we aren’t constantly beating ourselves up so often. So we can be kinder to ourselves. I think simply understanding that the other person is a flawed human being just like us and understanding they might have bigger things going on in their life that leads them to lash out can bring a lot of inner calm. Life is short and there are so many moments that might come up at the hands of other people that try to rob us of our happiness. That unfortunately will never change. But what can change is our reaction to it. Our ability to let it permeate that happiness. It’s an uphill battle for sure, but I think it’s one worth fighting.