limitations

"I can do all things through Christ who gives me strength."

Philippians 4:13

*For the sake of anonymity for those who I'm going to talk about here, I'm not going to name any names, and I'm not going to give any relationships that aren't necessary to the main point of the story, because that could potentially be hurtful and being hurtful isn't the point.*

A few days ago on a family trip I was talking to someone with whom I am not terribly well acquainted. This person did though, know about my disability, because everyone does. I have NO problem talking about it in an informative and open way, because it's a big part of me and I understand that. Anyway - we were sitting and talking, and this person asked me what I plan on doing after I graduate. There are many things that I could have said. I could have told them that I was going to go to grad school and get my masters, or my doctorate, or go directly into research before pursuing a graduate degree. I could have told them about how I intend to go into teaching, because I have been most profoundly influenced by my professors and I want to be able to influence young people in that same way. Buuuuuuuut that's not what I said. I said the one thing that I DO know for CERTAIN - when I graduate, I want to be a mom. I want to have kids. I have wanted that since I was about 7 years of age, back when I couldn't tell people those things because they would have thought that I was crazy. 7 year olds want to be astronauts and super models, not moms. So I told this person that I wanted to be a mom, because that has been my dream. 

Normally when I tell people this they awkwardly embrace my surprising response. 

Not this person. 

This person said, "Are you sure that's a good idea?" 

And I said, "Excuse me?" 

And with quite the attitude they said, "Your disease - it's hereditary, isn't it?" 

I was shocked. I responded with, "Well there is a 50/50 chance that it will be passed on." And that was the end of that. (BOY do I feel better putting this in writing...)

It also happened to be pretty much the last time that I voluntarily spoke with this person, because anyone who could be that presumptuous was not someone I wanted to speak with freely. 

When I was a child, my mom told me that if I couldn't say something nice, I shouldn't say anything at all. I'm sure a lot of people have been told that at one point in time by a parent or guardian or just an adult. If I was speaking with someone I had barely just met, I would never dare to make the judgements that were made that day, and I would certainly have never stated them the way that the person I was talking to did. They were blunt beyond belief - but one can be blunt without being rude. There is a difference. 

What I really learned from this experience is that the easiest way to bother me is to remind me that I'm disabled. It's not like I forget. Honestly. I'm constantly reminded that I'm different, without people telling me. So the easiest way to get to me, and really fire me up, is to act as if you know what is going on in my life. To act like you know what is best for me. I'm the one in this body, with the limitations that I have been given, and therefore I am the one with the job of sharing what those limitations are. If I don't tell you, you don't know. 

It's the same way with the issue of walking. My mom and I now have this unmentioned understanding (Well... I guess it's mentioned now...) that she doesn't ask me how I'm feeling. She will ask me if I want to do a particular activity, and depending upon my response, she knows how I'm doing. If she asks if I want to go hiking, she lets me pick the trail. I pick whether we walk one mile, or two, or five. She doesn't just PICK the shortest trail because I sometimes don't walk so well. That's the magic of my mom - she lets me make my own limits, and she lets me make those choices and own my disability, as opposed to making it own me instead. 

The moral of this story is this - do not limit other individuals because you think you are doing what is best for them. You have the best intentions, I know. But everyone has insecurities, and it's a shame when those insecurities are used to hold people back against their will. This is especially true (in my opinion) when it comes to people who are similar to myself. So next time, before you try to be sensitive to someone's situation, consider whether you are helping or hurting with that attention that you are paying them. Are you limiting their choices, or are you empowering them to show you what they need - to learn things about themselves that they didn't know? To take ownership of their situation? 

I know that when I am a mother, because someday I will be, if my children inherit my condition there will be a point probably shortly before they are the age that I am now, when I will have to let them learn for themselves what they can and cannot handle. When they learn that, and learn to effectively communicate it to others, I will know that I have been successful. 

Me, Justin, and my sister Megan starting the Hope Furnace trail at Lake Hope State Park. It's a 3.8 Mile trail, and I walked it with them and my mother that day.  Just sayin'.

if you judged them with only your eyes, chances are you're wrong.

You know what I never posted about? An experience that I had over Christmas break from school. I was working my day job at the mall, and I got off of my shift at about two o'clock I would say, (It's been a while so I don't completely remember the time...) and I had been having a particularly difficult morning on the EDS side of things. 

By the time I got done with my shift I was exhausted and I was limping rather badly because I had somehow managed to injure my left knee. My left side is my bad side, and if I can get through a day without injuring something on that side of myself, it's seriously a miracle. Anyway - I'm limping out to my car, which is parked in handicap parking, because I'm handicapped. 

Lets talk about that for a minute, since I'm ranting. 

I went through the arduous process of acquiring a prescription for a handicap placard from my geneticist because when I started driving I realized that walking from the south-end-of-east-parking-lot was really awful with misaligned hips. I can't tell you the number of times I tried to go to Kroger and had to sit down by the time I got to the front of the building. I'm basically an 80 year old woman - but I digress. I went through this almost two-month process because I wanted to make my life slightly less painful. I didn't do it because it would make my life more convenient, or because I wanted to play the system or anything like that. I did it because walking hurts, and no body likes pain. Agreed? Agreed. Moving on. 

So I was parked in handicap parking, with MY state issued placard displayed clearly, hanging from the rear-view mirror. I finally reached my car after limping through the packed mall parking lot, (since it is Christmas season, after all) and I get in, start my engine, and begin to pull out of the space. 

I see movement to my right. 

There is a woman, looks like she's in her late 40s early 50s, standing next to my passenger side window. She knocks on it. I open it. I look at her questioningly and ask if I can help her, not thinking anything of it. 

This woman looks at me with all the loving kindness of an upset crocodile and practically spits "You don't look very disabled - you take Mommy's car today so you wouldn't have to walk?" 

I can only imagine what my face looked like after she said that. I was half pulled out of my parking space, blocking traffic, and this woman is waiting for my response. I was so upset that I burst into tears and said, "This is MY placard ma'am, from MY doctors - I have a joint disorder that causes serious pain. You don't have to be OLD to be disabled - if that's what you mean. Maybe you should think about other people's situations before you judge them - If I could have walked from the edge of this parking lot, I would have. But I can't." She shook her head as if she didn't believe me, and I continued to sob as I rolled up my window and finished vacating the parking space so that whoever she was saving it for could park. 

Not all young people are self absorbed. Not all young people have no respect for authority. Not all young people think they can take advantage of systems that are there for people who need them. 

Not all old people are disabled. 

Not all people with disabilities are old. 

Some of them are 5'4", 18 year old brunettes who can't believe that the handicap space is so far from the employee entrance. 

If I had been 50, would anything have been said? 60? Maybe even 45? 

What about gray hair? Would that have done it? If I had been wearing a brown scarf instead of the hot pink one my co-worker had just given me? Something more mature? Older? Would that have made me look "disabled"? 

Do 30 year old men with cardiac problems walk with limps? Do they wear joint braces? Can you see their disability? No, you can't. 

Would that woman have said anything to a 30 year old man, using HIS handicap placard? Probably not. Maybe he would have been old enough to be disabled, old enough to warrant respect. 

Clearly my hair wasn't gray enough, my face not wrinkled enough, and my back not hunched enough. That experience has obviously effected me quite a bit, because I'm still talking about it three months later. Three months later that interaction is still etched into my mind, and I can't seem to get rid of it, because it taught me something about myself, and it taught me something about people. 

I give those around me the benefit of the doubt. All the time. I think that I would want them to give it to me as well - I give people respect initially, because they have done nothing to me that warrants my behavior being anything but kind. 

Most people don't give those around them the benefit of the doubt. People are judgmental, to a degree that I didn't think possible. It was severely naive of me, I know, but I didn't realize that everyone is always judging everyone else's motivations. I thought that kind of thing existed in the hallways of high schools where unfortunate kids were forced to spend four years of their lives - I thought the trivial drama stopped when you graduated. Boy was I wrong. Not only does it not stop, but it gets worse. It gets worse because after school sometimes your job, your livelihood is relying on the resolution of those petty dramatic moments. Sometimes conflict doesn't happen in parking lots, it happens in cubicles. 

The point is, I was affected much more by the encounter than I would like to admit, and it's been bothering me. Someone who I personally thought would be a very nice lady was very unkind. Someone who she thought was a self absorbed young person was really a young person dealing with pain. Maybe next time she'll think twice about saying something. 



If you've judged someone with only your eyes, you're probably wrong. 

i'm a fish, and we don't climb trees.

"If you judge a fish by it's ability to climb a tree, it will live its whole life believing that it is stupid."

I won't get in to whether or not I actually believe that this is something Einstein said, because I don't care. What I care about is that it's true. I don't mean that in the way that most people mean that though. Don't get me wrong, I'm all for being unique and not judging books by their covers and accepting people for who they are and all that jazz, but that's just not specifically what I get out of this quote, so here's your context.

I sometimes complain. Sometimes I'm a really awful person to be around - shocking, I know. But everyone complains sometimes, because everyone has their own burden to carry. Some people are in debt, some people are in a rough relationship - it just so happens that I have a chronic pain disorder. Yay me. That's not the point though. The issue is, just because my complaining about my chronic pain is a different subject than you complaining about not being able to figure out what kind of car you want to buy when you get your tax return does NOT mean that you should lecture me about my kind of complaining because somehow mine is more annoying than yours. 

News flash. 

My complaining is more annoying to you than your complaining is to you because mine has nothing to do with your life. You could likely listen to yourself complain about your car purchasing troubles just as long as I could listen to myself complain about my dislocated ribs, because our own lives are far more interesting to us than the lives of those around us. I'm definitely not saying that's how things should be, it's just the reality. 

Everyone complains - if you don't I seriously envy your ability to let things roll off your shoulders. Really. Pass some of that patience over here. I could use it. But I'm willing to bet that you do complain, because every once and a while, everyone needs to let things out. Stuff builds up in a person and either you let that sit and fester and turn into something much bigger than it is, or you let those little things out when they happen and it makes us all a little easier to deal with in the end. At least that's my judgement of the whole thing, I could be wrong. It happens. 

But the point is, it will do no one in the situation any good to listen to (or give, for that matter) a lecture about how certain people (namely myself) just need to accept that "life is just the way it is" sometimes, and that you just need to "let things happen the way they happen. Pain happens, and you move on," obviously I just need to "Get over it." 

Pain happens?? It just gives me the urge to yell "Run Forest RUN" when people give me that cliché response. It's not just that generally the people saying it have no idea what I'm actually going through, it's mostly that I'm normally expecting a completely different response. When we complain (especially if the "we" here is referring to women) we generally don't want you to fix it. We don't want advice. We want you to say "Well that sucks... I'm sorry." and have that be the end of it. No one asked for a lecture. 

And maybe you didn't ask to hear me talk about how my knees are really killing me because the weather doesn't understand how to calm down, but you know what? I don't care what car you're getting when you get your tax return either. Do you hear me telling you about all the other, more useful things you could be doing with that money? Preaching to you about how many needy kids could be fed with that money? Nope. You don't. Am I thinking about telling you all of those things? Yup. But because that's not what you want to hear, I keep my mouth shut, and make up an imaginary scenario that is close to but not exactly what our actual conversation was about, so that I can put it on the internet and make myself feel a little better. (Hence perpetuating the cycle of complaints...)

If maybe we could all just judge the fish by their ability to swim and the birds by their ability to fly, then we would all be a little better off. Maybe we should stop holding ourselves to a lower standard than we hold those around us. Don't you think it might be a little bit easier for all of us if we gave people the benefit of the doubt? If we let people complain every once and a while? Loosened up? Said "Man, that sucks... I'm sorry," and just let people do what they need to do, even if it's a little bit annoying for all of about two minutes of your time? Can't you maybe, just maybe, give two minutes to help someone else feel just a little bit better about something they're going through? I'll try to do it for you too - promise.  

I'm a fish. I can't climb trees. I'm okay with that. 

I'm not asking you to be okay with it, I'm just asking you to respect that my swimming is just as relevant a mode of transportation as your climbing. Different does not equal lesser. 

Plus I'd probably dislocate something if I tried to climb trees anyway.