In an earlier post, I rambled on and on about wondering who I’d be if I didn’t have MHE. I guess I will never know if I would be a completely different person, but I do know something: it would be a lot easier.

Yesterday, I went to the mall. I had some last minute Christmas shopping to do. After spending not even 3 hours wondering around with my friends shopping for the people on my list, my legs were killing me. It hurt so much to take each step, and my legs felt as if they both seperately weighed over a hundred pounds each.

I didn’t feel like I could share my pains with the people I was with because I didn’t really honestly think they would understand. When my boyfriend showed up to do his Christmas shopping, I knew that he would be quicker. Basically in and out – he hates malls. So I decided to leave the people I was with after telling them I was going to help him shop.

Now I’m in a fight with my best friend. All because communication lines are fuzzy. I can’t explain myself in words to the people I’m talking to. Blogging about things is easier because I’m not talking to one direct person. I’m writing stuff down and people are reading it after I’ve published it. I find it easier to chat with people online then to talk with them on the phone, which is why I hardly call anyone. There’s something about the keyboard that makes me feel free – so to speak. I’m able to explain what’s going on a little better, instead of talking to someone about it.

Anyway, I left the mall because I didn’t want to push myself anymore. I knew that if I were to spend another hour there walking around and standing in huge lineups, I would seriously regret it in the morning. It didn’t help that it was damp and raining outside – two things that are not good for my legs at all. I know my body, and I know when to call it quits for the day.

If I had the opportunity to change one thing about MHE I would change the pain part. Not only is it painful, but it’s annoying to myself and everyone else around me. It holds me back from doing simple tasks such as Christmas shopping. It makes little things more difficult. It’s the worst part of MHE, because it’s always there. Both physically and emotionally.

I just finished writing a letter to my pen pal Mandy in the States. During the letter, I briefly mentioned to her how I used to feel about myself regarding relationships and other such things. Although it was mentioned briefly in the letter, I now find myself thinking about the way I used to think. Are you following me still? Probably not. I’m not making any sense really, but I will in time – I promise.

In grade seven and eight, and most of grade nine too for that matter – I truly believed that I was deemed “unworthy” of having any cute, decent guy crush on me. I automatically thought that they wouldn’t like me after finding out about my MHE. Most of the times, I was right, but only because it was back in grade seven, when boys still thought belching and farting was cool – hell, they still think belching and farting is cool. What I mean to say is they were even more immature in grade seven then they are now, which is saying a lot – for the most part anyway.

In grade seven, I also thought that “a person like me” shouldn’t wear makeup. I wasn’t meant to be a normal teenage girl, so I shouldn’t act like a normal teenage girl by wearing makeup and carrying a purse. That’s right – I didn’t even think I was worthy of having a purse! I don’t know where my train of thought came from, well me obviously but I don’t know why I thought that.

I know now (obviously) that I was completely wrong with my outlook on life. It was ignorant of me to think that of myself, and it’s just as worse as other people being ignorant towards my medical disability. Now I know that I am just as worthy of having relationships as anyone else in the world is. I wear makeup, and do “normal” teenage girl stuff. Since I grew up a little and realized how wrong I was, I’ve never thought anything like that again, because that way of thinking is wrong and very self harming.

There’s no doubt that I walk with a limp – that’s pretty obvious after several leg operations – and no matter where I am, sooner or later someone always asks me; “Why are you limping?”

It’s the dreaded question. It seems that I’ll just be feeling confident about my walking skills and then someone will ask that question. My mind will complain and whine about it, saying; “But I thought I was doing better!” while my mouth answers the question tonelessly. Usually, I don’t answer truthfully. To answer truthfully, I would have to take up a lot of that person’s time, and how can I be sure if they’re actually interested in hearing the full story?

It’s happened in the most unusual of places. For instance, I’ve previously mentioned I volunteer for a place called Sunrise Youth Group, and all of the members have some kind of developmental problem. At one of the week long camps this year, one of my fellow volunteers made fun of the way I walked. I was a little thrown off at the “You walk like an old lady!” comments, seeing as we were at that camp to begin with. The guy saying them didn’t mean any harm, but like I said, ignorance is a barrier. Those comments hurt me, because I had thought I was doing so well. I had just had my leg surgery that May [I think...the details are a little fuzzy, they're always fuzzy!] and I thought I was doing pretty good, since it was August and all. So basically I had two and a bit of months to heal before ditching my crutches and going to the camp.

I’ve noticed that in the hallways at school, if someone is staring at me (which they do a lot, and I hate staring people, can’t they find anything more interesting to look at?) I notice I limp more because I’m trying so hard not to that I end up limping more. How does that make sense? I don’t know. Heck, for all I know, those people who stare at me could be playing there own private game of “Let’s see who can make Jessica limp more!”

I also limp more if I’m tired or in a hurry. Tired is obvious, everyone walks weird when their tired, but limping more because you’re in a hurry? I guess it’s because I haven’t really regained full use of all of my leg muscles yet. I would by now, had I gone to all my Physio Therapy appointments and done all the exercises.

A note to all you little MHE’ers out there: Physio Therapy is very important. Even if you really don’t want to, go to every appointment and do every exercise. That way you’ll get better faster. It’s been around six months since my last leg surgery, and I’m still having difficulties – all because I didn’t really do the exercises my Physio Therapist wanted me to do. So do those exercises and more, that way you get better quicker and you might just be able to do something about that limp. Mine is with me until I do those exercises and strenghten my leg though.

I’ve always been extra careful when it comes to using my MHE as a “crutch” (a means of getting out of things that I don’t want to do) because I don’t want everyone thinking I use MHE as an excuse to, lets say, get out of class early – which most of my friends think I do. The truth of the matter is that lately, I’ve been extra slow at walking. My legs both feel as though the weigh 50 pounds each. Walking anywhere is 10x harder then it was before I had the surgery on my legs a couple months ago. I don’t know why, one would think that the surgery would make things easier, but it doesn’t appear to be so. As I’ve mentioned previously, the trouble I’ve been having with my legs lately as caused me to quit my 2 month job at Wendy’s and generally just be more tired.

I know several people who will have a cold or a twisted ankle and use it to get out of doing things. For example, I know a girl who is anaemic or at least she says she is anyway. She used this as an excuse to get out of class and take long walks in the hallways during last years Art class. It angered me to no end, not only because when your anaemic you generally are more tired and therefore shouldn’t be taking long walks during class, but because I too was suffering from low iron. I had to take iron pills because of a previous surgery on my left hip and knee. During that surgery, I lost a lot of blood. My doctors wanted me to have a blood transfusion, which is a really scary thing for me. Other people’s blood inside of me? My parent’s weren’t to fond of that idea either, because the tiny risk that comes with having a blood transfusion would most likely happen to me. I’ve mystified my doctors a thousand times before (or so it seems), so they just didn’t want to risk it. Instead, we opted for taking iron pills three times a day. It worked for me.

I suppose to most people who don’t have MHE, it would appear that I am using it as a crutch. I leave class 5 minutes early to avoid the “hall way rush”, which can be a real pain. Nobody has proper hall way etiquette anymore. People at my school either stand right in the middle of the hallway, making it impossible to get by, or just plow right through you. I’ve obtained many bruises from this, and my fear of crowds has increased thanks to it. I also don’t take gym, or play any sports. Over the past couple of years, I’ve missed a lot of school, thanks to immobilizing issues with my legs. Sometimes, they ache so much I can barely move, let alone walk around school for the day.

I feel like an old woman, my body gets tired way to easily. There are a million things that I would love to do but can’t because it drains my energy quicker then I can say “let’s do it”. For instance, I barely go outside to “play in the snow” anymore, and it’s not because I believe I’m too old to do that. Getting decked out in my snow suit and putting on my boots makes me so tired that I don’t even have the energy to go outside afterwards. I’d also love to go horse back riding, or perhaps snowboarding. I know snowboarding is highly unlikely, actually it’s never going to happen. My parents already had a talk about it with me…heh.

I know a couple of my friends an peers probably think I am using my MHE to get out of school etc, but that’s far from the truth. What I wouldn’t give to be able to go to school everyday! I would love to be an “average” teenager who fakes sick to get out of school, instead of actually not being able to move. Staying home because your legs/other body parts hurt so much that you can’t move isn’t fun, it’s far from it. It’s boring and, well, painful. So I hope that if any of my classmates/peers come across this blog, they’ll think twice before assuming that I do it just to get out of school.

I don’t know if my tendency for getting cramps is because of my MHE or what, but I tend to get them a lot, especially during damp or cold weather. My dad gets them too, and I’m assuming he has working outdoors a lot to thank for his regular back, foot and leg cramps.

When I get cramps, it hurts – a lot. It’s very difficult to hold back the tears because it hurts so much. The only thing that seems to work on a cramped foot is heat pads. I guess the heat gets into the muscles that are cramped and relaxes them. Without heat pads, I don’t know what I’d do. I guess foot massages work too… but I generally don’t like people touching my feet. Usually when people do touch my feet, it makes them cramp up. I’m weird that way.

Last night I was lucky enough to get a really bad cramp in my foot. What makes it worse was I wasn’t at home, I was at my boyfriends house. We were joking around and he pushed me off the couch – I fell and when I did my foot cramped. I tried my hardest to hold back the tears but it hurt so frigging much! It was really embarrassing for me. I hate crying in front of people, and I hate showing when I’m in pain. But he was sweet about it and went and got me one of those electrical heating pads. He wrapped my foot in it and held it in his lap, and it worked. Heat becomes my best friend when I have a cramped foot. I’ve never had a back cramp before (thank God, and knock on wood – because I don’t ever want one), and I can take leg cramps better then I can feet cramps. I don’t know why, but feet cramps hurt me more.

I’d like to know everyone else’s thoughts on cramps. Does it hurt you really badly? What helps with the pain? Anyone who gets cramps can answer those questions. I’ve always wondered if people who don’t have MHE find it as painful as I do (which is a 10 on a scale of 1-10 during the cramping, and a 5 after I’ve managed to stop the cramping – it still aches afterwards).

Sometimes, when I have those really bad days, I can’t drag my mind away from who I’d be if I didn’t have a medical disorder. I create little stories in my head about the person I’d be if I didn’t have MHE. Perhaps I’d be closer to my friends, having nothing to divide us. We would have more to relate too, and I would probably enjoy high school a hell of a lot more then I do now. Perhaps I’d be more obsessed with material objects, and more in the “social circle” at school. I imagine I would be more like my sisters, and I’d probably have stronger bonds with them. My MHE is a divider in my world, but only because I’ve let it become so.

Has having MHE made me a better person? If I didn’t have MHE, would I lack all of the qualities I currently have? Are they a result of having MHE? I’ve noticed I have more empathy then most people my age, is this because of all I’ve been through? I have no idea. I also don’t know if MHE has made me a little bit kooky at times. I’ve lived in the real “teenage girl” world of clothes, boys, gossip, makeup, and other “fads”, but I’ve never found them to be extremely important and I’m aware that there are worse things then wearing a hideous pair of shoes. But if I didn’t have MHE, maybe I would handle things differently.

I have a million questions on this topic. And after thinking about it long and hard, I’ll ask myself if I would trade everything I am now just to be MHE free. I don’t think I would, if given the option. I’d probably loose all of the personality traits I’ve developed over the years. Even if it meant ending the future of surgeries ahead and getting rid of the constant worries and pains, I am afraid of being someone that I would hate more then the person I am.

I’m 17, it’s practically a rule for me to find fault with myself. My only fault is that I don’t love myself completely, that I don’t trust myself. I’m merely passing through life and dealing with things when I should be living life to the fullest. I’m afraid to do things that might cause me harm, such as snowboarding or skiing. My parents and my doctors have scared me from doing the things I really want to try. Not intentionally of course, but because they worry about me and about what were to happen if I hurt myself. Because I have MHE, my bones wouldn’t heal the same way if I broke them, and my doctors can’t predict how they would heal because I’m the only case at my hospital and I’ve never broken anything before.

But if I was MHE free, maybe it would be worse. Maybe “normal” teens have it worse then I do. I am able to think for myself, instead of thinking like sheep in a herd – not saying teens can’t think for themselves, they can, but most choose not to. When they think about things, they think about how it will affect them socially. I feel empathy and I don’t bully people. I try not to judge someone, and I never judge by first impressions or the way someone walks. I have trouble dealing with everything occasionally, but maybe it’s harder being a teen without a medical disability because they lack all the things I know and won’t see all the things I’ve seen for many years. Reality will be slow hitting them.

I still can’t help thinking about that though, about who I would be if I didn’t have a medical disability. I guess the grass is always greener on the other side. My siblings and peers probably envy me because I can take “long holidays” off school, but I envy them because they aren’t forced to take breaks from school when their body reaches it’s breaking point.

I’ve felt both everyday for as long as I can remember. The pain comes hand in hand with the worries. Worries like; if I tell my parents, will they get annoyed? Will it result in yet another surgery? What will my peers say when I come back?

I try to keep any pain I’m feeling on the down low, because I don’t want to annoy or upset anyone. Or seem like I’m a whinny complainer who can’t take the pain. Over the counter medicines like Tylenol and Advil don’t help with my MHE related pain, so taking those ‘pain killers’ is pointless. I’ve come up with alternative ways of dealing with pain: I ignore it.

For the most part, it works. I can block out a lot of things generally, but sometimes it gets to be too much. At that point, I’ll smother on a lot of Rub A535 or a heat pad. It helps for the most part, but the pain is still there. It helps dull it down a bit though, so I can go back to ignoring it.

For the past couple of years (more notably in the past few months), my toes have been causing me a lot of discomfort and immense pain if I happen to smash them off something (which happens frequently) or wear shoes that are too tight (like I did on semi night…not such a good idea). I’ve mentioned this to my parents, and they’ve told me to remember to tell my doctor when I go for my appointment in January. Of course, I already know what this will most likely result in.

Another surgery. This time, most likely a reconstruction surgery. I’ve never had a reconstruction surgery before and I’m not sure what to expect, but it will probably come with a lot of pain. Along with the pain of another surgery comes a flood of worries. I’m assuming that a reconstruction surgery will mean I will have to take a lot of time off school. Next semester, I’m to take Writers Craft (a really difficult course that’s all about the craft of writing… in case it wasn’t obvious already) and a two-period afternoon co-op at Sunrise Youth Group. I was really looking forward to next semester.

All last year, I worked my butt off so I could get into Writers Craft. I didn’t have the required prerequisites – which was grade 11 University English – but my principle gave the go ahead because I worked really hard. Not to mention, I was excited about being a co-op student at Sunrise. If I have the reconstruction surgery on my toes, then I will miss a lot of time. I’m worried that Niki (the program director of Sunrise) will regret taking me on as her co-op student. Not to mention, I’ll probably miss out on a lot.

But I’m going to have to wait until January to find out what’s really going to happen. The waiting is going to stink though.

Winter has never really been my favourite time of the year; the cold weather makes my old bones ache far worse then any other time of the year. Not to mention, the huge amount of snow we get in Canada really slows me down. I hurt myself a lot during the weeks of winter, by slipping on ice and falling. I’m a clumsy girl.

I’ve yet to find a decent pair of boots for the winter, and usually end up just wearing my running shoes – so my feet get cold and sore. The boots that I currently have are what I’ve nicknamed my “old lady” boots – I don’t like wearing them because I feel like a dork. I’ve always loved shoes, even if I can’t wear most of them because they’re too uncomfy, but I draw the line at anything old lady-ish. That picture just below is what my current boots sorta look like. I don’t like them because they’re very plain. I like wild, pretty things. So I don’t like wearing these. Plus, the tread sucks. I still manage to slip and fall on my ass! In Grade 10, wearing these boots, I fell down my porch steps and fractured my wrist.

In Grade 7, I used to carry my running shoes to school in my bag so that as soon as I got to school, I could change out of my ugly boots and into my running shoes. As it is, my book bag is already way to heavy for me. Adding unnecessary weight to it was silly, and I would always end up hurting my back even more. Not to mention, it was a major hassle for me. Usually I have to sit down in a chair to put my shoes on if I can’t just slide into them (I’m one of those lazy people who leaves them tied up so I don’t have to tie them again the next time I put them on). There isn’t anywhere I can sit near my locker to change my boots. So I usually ended up hopping on one foot and looking like an idiot while I tried to switch from my ugly old lady boots to my running shoes.

Now for the past couple of years, I’ve been searching for a dream pair of boots that will keep my feet warm in the winter but will still be considered “fashionable” for high school wear – and not make me too hot while I wear them side. I’ve tried hiking boots, and I’ve yet to find a pair that’s comfortable enough because of my oddly shaped ankles. Not to mention, hiking boots are quite heavy.

I’m quite fond of those “fuzzy boots”, you know…the ones with fuzz balls hanging off strings that seem to be the “latest fashion”? I’ve seen a girl at my school with a nice black and white pair, and the best part about these boots are that they are flat. Most lady’s boots have huge heels – which is ridiculous to me because what good will they do if you walk across a patch of ice? I’ve never been able to wear heels, and I’m not going to even attempt it on a bunch of snow and ice. That’s just foolish.

So on my Christmas list this year, is a pair of those lovely fuzzy boots. With good tread. Those black and white ones in the picture above look like they have a nice tread, and maybe I’ll spend more time on my feet this year, opposed to my butt.

Sometimes, the things that please us the most are really small things. These things warm the deepest, coldest corners of our souls and make us smile from the inside out. Today, I’ve just experienced one of those feelings, and it instantly put a smile on my face.

My older sister, Kathrynn, is in college. She chose to write about me for an oral presentation she had to do for one of her courses. At first, I wasn’t too happy with this idea because I didn’t know why she wanted to write about MHE and, well, me. Kate is a very guarded person, she keeps her feelings and her views on things to herself. We’ve never really discussed my MHE on a personal note, so I was very surprised when I found out a couple weeks ago that I was to be her topic. It seemed like to me that Kate didn’t have the slightest clue what I went through on a daily basis, and she acted as if I was faking not being able to work or go to school to get out of things. I’m not sure if she intended to come accross like this to bug me like sisters do or if it was all in my head in the first place.

After I finished reading her written part of the project, I realised that although Kathrynn doesn’t always show she knows and understands, she does. In her paper, she starts off asking the class if they’ve ever judged someone that they didn’t know. Then she says “after today, I hope to get you all to think twice before commenting on something as small as the way someone walks“. I guess she wrote that because she knows how much little comments about the way I walk hurt. To most people, it may seem like they’re just “making an observation”, but to me its a reminder of how I’m different. After this, she goes on to explain MHE and why she chose to write about it – and she wrote about it because of me. She explains the nature of MHE and the surgeries I have to have, and for her conclusion she uses one of the poems I wrote ages ago:

Look me in the eyes,
tell me if what you see
has anything to do
with my MHE.
Do you know who I am?
Do you know who I’ll be,
if you keep laughing
and making fun of me?
You call me gimpy,
you laugh and stare.
You think I can’t hear you,
but I am aware.
I know why you mock me,
And I don’t blame you.
You honestly have no idea,
what I go through.

Then she wrote “It really hurts me to see or hear people making fun of her for the way she walks or becasue she has extra bones.” This sentence is one that nearly brought me to tears. I had no idea she knew about it, or cared. Often when I confined in her, she just shrugged it off and told me not to worry about it – I interoperated this to mean she didn’t care. In reality, she just didn’t know what to say, or how to form the sentences.

Not only is it hard growing up having a medical disorder, but it’s hard for the siblings of people with medical disorders as well. They undoubtably have to answer just as awkward questions, and although they don’t have to go through the surgeries themselves; they have to watch a loved one go through them. They worry and they cry just as much. The comments and insults hurt them as well because they feel powerless and at a loss of what to say or do to prevent it. Sometimes this leads to them getting frustrated with the source of it; which leads to comments that are said and later regretted deeply.

I volunteer at a place called Sunrise Youth Group – a non-profit charitable organization for adults with developmental disabilities such as Down syndrome and Autism. I’ve been doing this for a year now, and I love every minute of it. The members are so amazing and fun to be with, they always manage to put a smile to my face. They certainly make you think twice about feeling sorry for yourself because they are always so happy and content with life. It makes you wonder how you could ever complain.

Since I’ve started volunteering, I’ve had more confidence and less epiosodes of pitying myself. It’s hard to hate what you’ve been given when you look at people who have it “worse”, yet who are the happiest people around. We can all learn something from this.

Volunteering is a healthy way to give back to society. It makes you feel good about yourself and the people you’re helping feel good about themselves, and it’s fun. In the end, everybody wins. You learn a lot of good life experiences (and earn your required community service hours for high school) and it’s something that will stay with you for years to come. I was finished my required 40 hours within less than a month, but I’m still keeping track of everything because some schools offer scholarships for those with lots of volunteering hours. Not to mention, working with people who have special needs has always been something I want to do.

If you don’t have a place like Sunrise around your neighbourhood, you could always try volunteering at a hospital, at an old folk’s home, a soup kitchen, or even a community center for troubled teens. Choose something that is good for you and that you think you’ll enjoying doing. For instance, if you don’t get along with teens then volunteering to help out with trouble teens probably isn’t your best option.

Everybody needs a happy place, somewhere to go where they can forget about their own problems and focus on someone elses. Sunrise has given me a place to go where I can be myself and develop friendships with really great people. I strongly suggest looking into something like that.