In the Eye of the Beholder

If I never wrote another blog and shared another article on this page, I would be happy the last would be this one. As I was getting ready to doze off to sleep, I came upon this article via my Facebook News Feed. Julia, even as someone who was just temporarily disabled, had the most profoundly accurate experience and understanding of what it’s like not just to be disabled, but to be disabled in the way I am. To not be in a wheelchair or use a cane or crutches. This particular paragraph summed up just about my entire experience with various able-bodied people (not all, just some) in my life to a tee:

Like most able-bodied people, I didn’t think about my privilege a great deal before it was taken from me. I’ve passive-aggressively lapped slow walkers more times than I can count. I’ve overlooked the existence of invisible disabilities, assuming that all people with physical disabilities needed a wheelchair or crutches to get around. I have definitely called a person with a disability “inspiring” for no other reason than that they had a disability, and I’ve rolled my eyes when a person took the elevator only one floor.

This list of course doesn’t include the slew of ridiculous comments people have made when they see me walk or limp, the glares or knocks on my car window that I get when I park in a handicapped spot, or the times when those people who passive-aggressively walk past or around you (including cutting in front of you in the airport security line) then turn around and stare at you as you limp behind them. But I was so unbelievably excited to read that a complete stranger just totally got it. Someone who wasn’t even born with a disability and only experienced what it was like to have one for a short time.

I can admittedly be judgmental and harsh myself, even as someone with MD who should know better. When I see someone in a giant SUV or truck parked in a handicapped spot, I wonder how in the world they could possibly be disabled yet get into such a big and high-off-the-ground car. When I go places (especially in Southern California) and see everyone with their running gear or yoga pants on after a morning workout, I get irritated because I assume those people have never even thought that there might be people in the world who can’t do what they do so easily every day. Of course I don’t know a thing about these people and I’m judging them on appearance just as I’ve been judged which is completely unfair. I’m sure in reality many of them are very aware that disabled people exist or may even have a family member or friend who is.

Unfortunately, there are still plenty of things that some able-bodied people just don’t think about. At work for example, we have a bathroom on our floor with two stalls. One is regular and one has the high toilet and handrail bar for someone disabled. The regular stall has a toilet that is low and therefore is extremely difficult for me to get off of so I always use the other stall. Unfortunately my able-bodied coworkers don’t often realize that’s what the stall is meant for, so a lot of them who don’t need to use it, so when I go in and that stall is taken, I’m forced to either go to another floor, wait, or risk going in the other stall. I explained this to a coworker one day and she admitted she had never even realized that’s what that stall was intended for or that it would be a problem for me to use the other stall. She thanked me for enlightening her on that.

I get it. When you don’t have something (aka a disability), it’s just not something that’s in your mindset. It’s not a personal thing most of the time. It’s usually just ignorance or a a lack of awareness. Our culture is only just now starting to really expose people to the life of someone with a disability to begin with. And we’re all guilty of being self-focused sometimes, myself included. But what Julia explained in her blog is one of the main reasons I blog and share my story. Yes it’s therapeutic for me but more importantly, it helps to raise awareness of what people with MD and people who have a disability that doesn’t “look” like what most disabilities look like go through, even if it’s just on a minute level.

I thanked her via a comment on her post but I wanted to extend another thank you. For being so open about her own struggles and the missteps she might have made in judging people with disabilities before she was confronted with her own. I know it certainly opened my eyes too, even as a disabled person, to not judging other people just based on appearances. You never know what someone might be going through or what struggles they’ve had, even if it didn’t come in the form of a physical disability.

You’re Too Nice

This is something I’ve often told myself over and over. But a funny thing has happened in recent months. I started being compassionate toward the one person that means the most in my life…me! Instead of beating myself up for mistakes I make or my brain automatically defaulting to negative self-talk, the default has started to switch to positive self-talk. To reassuring myself that it’s ok. That I’m only human. That I’m still pretty awesome.

Other people tend to mistake my niceness as weakness. They think because I don’t choose to fight every battle, because I don’t walk around constantly asserting myself or even to defend myself sometimes that that’s a free pass to take advantage of me or talk down to me. That I’m somehow less than. And you know what? Up until recently, I probably would have agreed. I’m not saying I still don’t have room for improvement on standing up for myself sometimes but this is also just who I am. I’m a nice person. I don’t always think well on my feet. I have to let things sit in my mind and process. I pick my battles and I don’t generally feel the need to argue with someone just to stand up for myself or to prove I’m right. It’s just not worth it, especially with people who are just being negative or so focused on being right themselves.

I don’t prescribe to one religion in my life but one thing I do very much agree with is the Biblical reference to Jesus and “turning the other cheek.” People interpret this different ways I’m sure but I’ve always taken it as, no matter how hard others beat you down (slap your cheek), no matter how awful someone else may treat you, you just have to let it go and move forward (turn the other cheek). Again, that’s not to say not to defend yourself ever, but why waste the energy slapping someone back who clearly is negative and doesn’t have your best interests in mind, or maybe doesn’t even know you? I’d rather save my energy (and my hand) for something a lot more productive!

When my car accident happened, I became obsessed with this idea that I didn’t want people to think I was too nice. I didn’t want to be taken advantage of by the police, my car insurance, the hospital, anyone. So you know what I did? I wasn’t nice to a lot of people. I was angry and rude to a woman at Costco who had nothing to do with my glasses being messed up. I sent semi angry emails to my insurance agent so he wouldn’t think i was ok to take advantage of me. I got mad with the people handling my claim that were making mistakes. And you know how all that made me feel (the one guy really did a bit of scolding though :) ) ? It made me feel bad. It made me feel guilty and it made me feel like I hadn’t been my true self.

I’m trying this new thing these days: self-acceptance. Not just in the form of self-compassionate thoughts, but of actually just standing up and saying “This is who I am and I’m not going to change it.” I’m not going to apologize for being nice. I’m not going to apologize for needing a good cry sometimes. I’m not going to apologize for not defending myself every time someone tries to tear me down and because I choose that, it doesn’t mean that I’m not confident or self-assured. I won’t say I’m sorry for taking the high road and for turning the other cheek. But first and foremost, I am definitely not going to doubt myself or think I need to change myself just because some people interpret my affability as weakness. That’s their problem, not mine. The people who matter and the people who care about me know that my niceness is just part of who I am and they love me for it. But most of all, I love me for it.


Last week I did something that off hand, isn’t going to sound like a scary thing: I volunteered with my job for 2 days with a great organization called Tourism Cares. We were all tasked with different jobs to help maintain, repair and preserve iconic sites all around the Los Angeles waterfront. The scary part though was not knowing what I was getting into. As a disabled person, I was scared if there would be stairs involved, how much walking there might be, would my assigned job be something I couldn’t do or really help with?

When I originally signed up to potentially be picked for this, I actually very uncharacteristically didn’t think much about the logistics or how physical it might be. The other big volunteer project my office does usually involves doing a lot of difficult manual labor, things I just couldn’t do, but this project had a lot of different options and one that seemed very do-able so I jumped at the chance. I was excited to step outside of my comfort zone. As the days went on though and the actual project date got closer, I started to get more and more stressed out. There were several instances where I wanted to just email and say I wasn’t going to be able to do it. But with the help of some encouragement from coworkers, I stuck with it and went. And you know what? It was one of the best experiences! It did involve a lot of walking (only a few stairs thankfully), I almost took out a veggie plate on our harbor cruise and I had to give myself some sitting breaks during our actual volunteer assignment but I made it! I loved the place I got to volunteer at (The Banning Museum. I highly suggest you check it out if you live in the SoCal area). I worked on a great team and at the end of the 2 days, I was sore and exhausted but I felt ecstatic for having conquered another fear and not backed down from something that was challenging and was outside of my comfort zone.

Like I’ve said before, there’s always going to be things I’m not going to be able to do in life but the more often I take chances like this. The more often I step outside my comfort zone and am able to make things I can do work, the better I’ll feel. I always feel 100% better after taking a chance with something than I do with not doing something because I’m scared. Even if the something I take a chance with doesn’t go perfectly all the way through, the feeling of accomplishment I get out of knowing I did something or of not using my disability as a reason for me not to do something is a feeling like no other.

Here’s some pictures from my volunteering adventure:


One of the cool Victorian carriages we cleaned


In my volunteering garb (complete with broom)

The Banning Museum where we volunteered

The Banning Museum where we volunteered

You’re Nobody Til Somebody…

…Loves You. I hate this song. The tune isn’t bad, but the fact that the words reinforce the whole idea that we aren’t whole human beings until someone loves us or gives us the time of day makes me cringe. That something external is the only thing that will make us worthwhile or make us “somebody”, irritates me to no end. Now of course it was written in the 1940’s, a time very different than the one we live in now. I get that.

I found myself getting upset again tonight about what I wrote a couple blogs before this one. I’ve become what I’ve now coined as the “filler girl”. The girl guys don’t actually have any romantic feelings for but want to spend time with and then proceed to tell about the girls they actually have romantic feelings for. I take it way too personally, I admit that. I wonder what I must be doing wrong that I’m not one of those girls (and trust me, we all know one or two of them) that meets a guy and he is instantly interested in her (and this happens with nearly every single guy she comes into contact with). I thought to myself, “I just want to be wanted” (again, per the song: “It’s hard times when nobody wants you”). And then it hit me…this was just another form of relying on the validation of something outside of myself to make me feel whole, or like everyone else. Having a bunch of guys like me must mean I mean something too right? At first glance, it might not seem the same as seeking others approval or wanting everyone to like you but in truth, it’s exactly the same. So the core issue for me wasn’t even really about the guys themselves, it was about my own sense of self-worth.

So no, maybe I don’t have guys lined up around the corner right now (seriously people who told me that constantly when I was growing up, it’s a nice thought, but that’s just not the way it happened) but it doesn’t matter. The only validation I need is that which only I can provide. It can’t come from any guy, any girl, any car, any amount of money. It can only come from inside of me. Even if I live til the age of 80 and I’m still single and no guys are interested in me, I still have every capability and every right for that matter, to feel like a whole person. To feel validated and to feel worthy.

So sorry Dean (Martin)…you’re nobody until you love yourself. Screw everyone else.

Keep on Flyin’

We all have a lot of hopes and dreams. Some people want to be President, some want to be a doctor or a lawyer. Or maybe you’re like me and your hopes and dreams come in smaller packages sometimes.

One of my biggest hopes is to be able to travel without stressing out. That may be an impossible dream but I haven’t lost hope. As my next trip approaches, I think about how far I’ve already come. I didn’t fly by myself for the first time until I was about 23. It was my bucket list trip to New York in December. I even ended up taking a cab by myself to the airport. Back then, I would literally be rendered unable to sleep the night before because of the stress. Stress of being late and missing my flight because I can’t run to the gate. Stress from potentially losing my luggage. Getting stranded or having an overnight flight delay. The list could go on and on.

Now though, many years later, I still get stressed. I still worry about my luggage getting lost or missing a flight or what I’m going to do about my luggage after my bad carry on experiences, but it’s much more bearable now. I’m usually able to sleep just fine before a trip. I assert my disability a lot more freely and am not afraid to ask to pre-board. I have much more of a “take it as it comes” attitude.

I hope that someday I won’t even have a little iota of stress anymore. I think the more I do it, the easier it’s going to get which is a big reason why this year I’ve really tried to take every opportunity to travel. By the time 2015 rolls around, I will have been on a plane 4 times (actually more than that if you count layovers and round trip). Might not sound like a big deal to some people but as someone who was told she wouldn’t walk on her own without any kind of assistance ever, it’s huge. Not only did I prove the doctor’s wrong, I’ve proven myself and my own fears wrong too. I can travel on my own successfully. There are hurdles sometimes but I’ve managed to overcome them and I know I’ll continue to do so as I keep travelling. I really can’t say enough how fulfilled it makes me feel when I get back from a trip I did all on my own, even if it’s stressful.

Here’s to a good night’s sleep and another travel adventure.


I know I haven’t posted a blog in a while. I’ve been struggling a little bit with some things that have happened as a result of my being a blogger. But I never can stay away for too long :)

Something has been happening around me at a more increasing rate than before it seems. Guys I know, be it friends or otherwise, are finding relationships left and right and I’ve become the girl that most guys want to talk about the girl they like with (and that girl they like definitely is not me). I’m proud that people feel like I’m someone they can go to for advice or to listen and I try really hard not to compare the trajectory of my life with other people’s. We all have our own paths, but I can’t help but wonder why it seems to be so easy for them to find someone and what I’m doing to become the listening friend-zone girl.

I’ve never really been the girl guys pine after. I’m not the girl who ruins some guy for all other women (not that I would want to do that anyway). I say that in the least self-hating, insecure way possible. I know I have a lot to offer someone and make a great relationship partner, it’s just been a reality. That doesn’t mean I haven’t turned down guys before or ended things with them, I’m just not that girl musicians write songs about or the one it takes guys forever to get over. I don’t know..maybe even saying that isn’t a good thing to put out into the universe. What I’m trying to say is I’ve hidden behind my disability for a long time and was extremely introverted so all those times I haven’t put myself out there, I’ve missed out on opportunities to meet people (and meet guys). I’ve missed opportunities to connect with people because I’ve been scared. I’m uptight. Though I have many hippie beliefs, I’m not really the carefree, spontaneous girl most guys seem to want or are put on a pedestal by society. It’s almost impossible to be that way when you’re born with a disability. I didn’t get into my first serious relationship until I was 22 for a reason. And sometimes these days, it seems I am still in that situation even though I’m a lot more outgoing and have a pretty full social life where I go out and meet people on a fairly regular basis.

But the big question I find myself asking is, “what if I do end up being single forever”? First of all, I know how ridiculous that sounds but I also know hands down I could be doing more to meet guys. The reality is, I’m just not willing to do that right now. Even if I had the option, I wouldn’t go out and hit up bars and clubs every weekend and I don’t want to strike up a conversation the cute guy sitting across from me at Starbucks no matter how cute or interesting he might be (if he struck up a convo, that would be a different story). Though the fear of finding myself being 45 and single grips me like an ice cold winter morning in Minnesota sometimes, I’m just too happy overall being on my own. Not relying on someone else. Not having to factor someone else in my life decisions. I can travel where I want to when I want to. I’m too stubborn to make a change and fully put myself out there right now.

I need to not put a timeline on myself. Even if I am 45 and still single down the road, that doesn’t make my life any less valuable than anyone else’s. It doesn’t mean I’m doing something wrong or that there’s something wrong with me (that one is hard to convince myself of sometimes). I just want the reassurance it’s going to happen for me at some point. The unknown is my worst enemy and I’m not always so good at having faith. But I guess all I can do is try.

For All My Friends

I dedicated a post to my parents a little while back but I wanted to take the opportunity to thank all of my amazing friends. Friends who have given me piggy back rides up three flights of stairs. Friends who have given me what I fondly refer to as the “belt loop boost” to get on and off the bus at Disneyland. Friends who may not understand what it’s like to have a disability but are always there for me when I need to vent about it or just totally fall apart. Friends who help talk me through those moments. Friends who make me laugh when I want to cry. Friends who, no matter what they’re doing, always have time for a phone call or a text message. Friends who stay behind with me in a big group when we’re walking because I can’t walk as fast as everyone else. Friends who teach me what true positivity is. Friends who have literally picked me up when I fell. Most importantly, friends who teach me what true friendship is.

It’s not my fault I was born with MD obviously and I deserve friendship just like anyone else but the reality is, it is more effort to be friends with me. You have to be aware of my limitations. You have to be prepared to lift me off the ground if I fall. You can’t walk too fast. So it really takes a special person with all of that in mind to love and accept someone and to not just be their friend, but to really be there for them as a friend.

So for all of you amazing people in my life I am lucky to call a friend. Thank you for listening. Thank you for the endless support and most of all, thank you for loving me for me and for just being there. I love you all more than I could ever say.