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 :)
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.
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.
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.
I’m not very good at hiding how I feel on any given day, which is rather ironic because I’m not so great at actually talking about my feelings, especially with friends and family or in a relationship. If I’m having a bad day, pretty much everyone within a 100 mile radius can probably tell just based on the look on my face. I’m a very internal person…things are always swirling through my head which can be a real curse sometimes. I’m constantly trying to pull myself back into the present. When I’m having a bad day or am in a bad mood, I try my hardest to pull myself out of it, I really do, and I always try to tell myself to treat the world better than it’s treated me on those particular days.
One thing I admittedly never have done though is put myself in other people’s shoes when I’m in such a mood. Tonight, I did that. I pictured being that person who passes me at Target and sees a scowl on my face or even a friend or family member. That person doesn’t know what’s going on in my head. They don’t know the reason for me being upset, angry or hurt. They just see someone who looks mad at the world and when you’re dealing with friends, coworkers or someone like that, who’s to say they won’t think that they’ve done something wrong? And even if they don’t take it in a personal way like that, when you’re faced with negative energy like that, I think there’s no way for it not to rub off on that other person at least a little bit.
I’ve actually been in those people’s shoes before too. In fact, I think we’ve all been on the receiving end of someone having a bad day or being totally pissed off at something that actually had absolutely nothing to do with us and I think many of us have also asked ourselves if we did something wrong to annoy the other person or make them mad. I think we’ve all felt that pang and residual affect from their bad mood rub off on us. I’m ashamed to say that I never put two and two together on this. I never thought fully about how what’s going on in my head might manifest onto another person, a person who completely doesn’t deserve it.
Now I’m not advocating we should all try to be perfect and never let our emotions show on the outside, that’s just not possible (or healthy). I’m still going to have bad days and have a hard time hiding it, I know that. I think the best we can do is go in with the knowledge that how we feel inside can very much appear to others on the outside. I think we can be cognizant of the fact that how we feel does in fact affect those around us sometimes. So maybe we’ll never be 100% at being able to smile even when inside we’re frowning, but I think the best we can do is try. Sometimes being aware is half the battle. :)
My dad texted me this morning about something awesome that happened to him. He was at Starbucks behind a guy who bought 2 $10 gift cards. Said guy turned around, gave one card to my dad and one to the woman behind him and told them both to have a happy day. Reading his text almost brought me to tears. I’d heard of people buying each other’s drinks in the drive through many times (which is already awesome) but this was a whole different level of kindness. This guy actually had to turn around and face two complete strangers and tell them to have a great day on top of just buying them a gift. I mean…man.
I generally believe in the inherent goodness in people, but those days where it seems like the world is nothing but wars, ignorance and hatred and people being generally terrible to one another definitely creep up on me plenty too. What happened to my dad this morning might seem like a small gesture of kindness in the grand scheme of things…but for me, knowing that there’s a person out there that got up in the morning and decided they were going to make someone else’s day just a little bit better moved me so much.
I generally try to stay away from being preachy here because I hate being preached at, but for this particular topic, I’m going to preach preach preach…to you and to myself. Make the conscious choice to wake up and try make someone else’s day better. It doesn’t have to be buying them a Starbucks drink or a gift card. It can be smiling at a passing stranger, complimenting someone on something, laughing at someone’s joke, listening to a friend in need, talking to the homeless person on the corner instead of pretending you don’t see them. There’s about a million big and small ways we can make someone else’s day better. And you know what happens when you do that? They’re going to be a lot more likely to do the same for someone else. We can’t help but be inspired by the kindness of others. I know I certainly am. That’s what paying it forward is all about. This world can be tough to navigate sometimes for all of us. So why not try make it just a little less hard for someone just by being a fellow human being? Just by being kind. So how are you going to pay it forward? :)
I’m not a big fan of generalizations and especially not of stereotypes. Part of this I’m sure stems from my having a disability that’s different than what most people are used to seeing. But I also just don’t think you can ever apply ideas or characteristics to an entire group of people. Even if the majority of said group happens to have the characteristics of a generalization or a stereotype, there will still always be people who don’t fit into that mold. The “outliers” of sorts. Therefore, I think it’s completely unfair to apply something to an entire group, even if there are only one or two outliers.
The CEO at my company shared an article with us on our company social media platform today (known affectionately as Yammer) that discussed Generation Y (those born between the late 1970s and 1990s). She’s actually the one who gave me the idea for this post. It outlined three points to be true of those of us born in that generation: 1) highly ambitious, 2) delusional, and 3) taunted (as in comparing ourselves on social media, etc). I have always kind of taken issue with trying to slap labels on groups of people because then you get into those waters of stereotyping, but I understand how articles like these are just trying to make sense of groups of people as well. It’s a way to try to foster understanding. However, this particular article stereotyped the hell out of my generation and I took issue especially with the second point – delusional. The argument behind it was that we expect everything to be handed to us on a silver platter because we think we’re more “special” than everyone else. It also stated that we have unrealistic expectations. I think there are certainly people that fit into Gen-Y that have these characteristics (I think it goes without saying I’m sure there are members of Gen-X and the Baby Boomer generation even that probably have the same characteristics too) but I, and many people I know, absolutely do not. When I graduated college, the job market had started its steep descent from a plunging economy. I didn’t get a job for almost 6 months after I graduated and even that was pretty good. The job availability just wasn’t there. This wasn’t the case for past generations. For a lot of people, you went to college, graduated and got a job right away. That’s exactly how it went for both of my parents. It wasn’t even really questioned, it just happened. I think that really started to change with my generation and we were made painfully aware early on that that wasn’t how things were going to work for us.
I also watched my dad work hard every day at his job and my mom work hard to raise me so I knew from a young age the value of hard work. I knew that things didn’t just get handed to you in life; that you usually had to work for them. So I completely do not identify with the article’s assertion that we all just expect to be CEOs right out of the gate or expect some high paying job to just drop into our laps. I know there’s plenty of other people out there who feel the same way too.
I’ve always considered myself to be an outlier. For most of my life, I felt like it was a bad thing and it caused a lot of anguish. I probably would have wanted to be considered a classic Generation-Y just like my peers. I just wanted to be like everyone else. I didn’t want to be different. But as I get older, the more I embrace the fact that I’m different. I’m an outlier in more ways than just the fact I have muscular dystrophy or don’t fit the mold for a Generation-Y member. The world needs us outliers, whether we’re from Generation L, M, N, O or P. Living outside the box (yes, living, not thinking), is what makes the world interesting. If everyone acted the same way or had the same opinion all the time, what a boring world we would live in. So waitbutwhy, I am very happy to be an outlier to your theory as many of us are I’m sure. So the next time you think of a Generation-“why”-er, maybe see them as a person first and not just as a label or a birth date.
I said that 2015 was the year of acceptance and I’ve really been trying to hold true to that (even accepting that sometimes, even at places like Disneyland, I’m going to be faced with skepticism about my disability).
When you step back and take a hard look, it’s really pretty crazy how much can really be gained just by letting acceptance into our lives. I’ve said before, that when people do things or behave in a way that I wouldn’t, I have a hard time understanding that. So I can get really mad when people don’t treat others with respect, when people drive recklessly or carelessly because they’re in a hurry, when a neighbor isn’t considerate or when someone steps all over other people in order to get ahead. But when you look at that sentence, everything I just listed relates to other people. None of it has anything to do with me and as frustrating as that can be, I’m never going to be able to control other people’s behavior. Can I try to make a positive impact and hope that that affects someone for the better? Of course. But there’s absolutely no sense in me getting all worked up about it. I’m only hurting myself in the end.
The only thing I can do is work on the way I approach and move through the world. I can accept that other people are going to be rude or careless or even just flat out awful sometimes, but I don’t have to be that way and I can take comfort in that. I can feel good about the fact that I care and am a hard worker. I can be satisfied knowing that when I get in my car, I’m not driving in a way that puts other people in danger.
I wish there was on “On” switch for acceptance that I could just flip on and all of a sudden I would be calm and collected about everything in my life and in the world. But unfortunately, I have to accept there’s not one of those either. The one thing there is though is the realization that acceptance is the real key to happiness. Not money, not status, not the amount of friends we have or the car we drive. Accepting that life has ups and downs (and sometimes some big ones). Accepting that people aren’t always going to be what we hoped they would be or behave perfectly all the time. Accepting that people approach the world in different ways, even if we don’t always agree with it or even if it isn’t right. Accepting that we can let go of so much stress and anxiety if we just accept that which we can’t control. The only thing we can really focus on is ourselves, and we have to accept that too. I’m trying my darndest!