Care

Take away all physical control. Give up on doing things exactly the way you feel like doing them. Accept that anything that you want done won’t be done when you want. Most people don't realize how instinctual their actions are; they don't realize how much of a routine they follow. When you think of the big picture, maybe your daily activities change, but the way you do things don't. This may come across as a little strange, but try paying attention to the detail in your actions. When you take a shower, what do you do first? Do you let the shower run while you go to the bathroom so that the water will be warm by the time you’re done? Once you’re in, do you wash your body first? If you do, where do you start? All this might sound absurd… if you observe closely, though, you’ll notice that the way you do things is very particular. In most cases, they are things that you don’t need to rely on other people to do; you go about your business and do things exactly the way you want it done. I’ve had to leave all that behind. I’ve had to accept that I can’t follow through with my particularities. I have a caregiver to help me start and get through my day. I must wake up in the morning at exactly the same time, whether it is a weekday, weekend, or holiday. I must direct the exact order in which I’d like things to proceed. Nothing happens when I will it to, there’s always a delay. Nothing comes instinctually; the thought may come, but the action doesn't. You truly do not realize the beauty of silence until you are forced express every single need. I find that, the times sitting in the car, or sitting at home when I’m on my laptop, I absolutely want to just sit in silence. There is a sort of peace that comes with not needing anything. I want to ask as little as possible from anyone, which means I ask for things when I absolutely need them. All this being said, I am blessed with an amazing caregiver. In a situation such as my own, a caregiver plays a tremendously important role. Having the right caregiver truly makes a difference in one’s happiness and wellbeing. With no exaggeration, a caregiver holds your life in their hands. The caregiver I have at the moment is the third I’ve had this year. After two caregivers quitting, I was blessed with the one I have now. I suppose it is a sort of serendipity. I must learn to appreciate what I receive. Even though I may not be happy that I am in a situation where a good caregiver is a gift. LOVE.JULIA.

Grand Catastrophe

You’ll have to excuse any spelling or punctuation issues as I’m using a new computer, which I haven’t yet downloaded Word onto so I don’t have my usual auto corrections. Not exactly sure what it is that I want to say today, but felt the need to write and unload a little. There have been a few thoughts bouncing around in my head lately, things like waiting, patience, pity, empathy, miracles... I’m not quite sure what the tone of all this is either, as my feelings have been rather ambiguous lately. Let's start with patience. Or at what point does patience cease to be patience and simply be waiting? Is there any virtue in just waiting? I don’t know which exactly I’m doing all the time, but I don’t think I have a choice of not being patient. My whole existence constitutes waiting. But then again who’s doesn’t? Maybe I just feel as though mine does more so because I was once able to do things at my own pace and now everything depends on another person. “oh, I’m feeling cold,” wait 5 minutes, get sweater and put it on. Or at times I attempt to do these things on my own and something that would normally take a minute would take me at least 15 minutes. But even that is better than waiting on someone else. Some things are just impossible for me to do, though.. when I am waiting in the car and it starts getting too hot, I can’t reach over to start the engine and turn the a/c on. I wait... hot, miserable, and hopeless. Ok, so this isn’t a “pity me” post. It’s just a “Aw, man this sucks” kind of post :p. It’s just that when I ask for help with something, the fact that I can;t just do it myself is already frustrating, but when the person I’m asking doesn’t do it and gets annoyed when I do it again, I can’t help but be annoyed... and to add on a comment like “you’re so impatient,” just pushes me over. I don’t ever say anything, though. hehe maybe that’s where I practice my patience. I don’t believe that my injury limits me from much because if I really want to do something, it’ll happen, buuuuutttt that doesn’t mean it’s easy. There are restrictions on time and places I can go depending on who has the time to be with me to take care of needs. My life is pretty much on a fixed schedule with little space to change. My days start and end, not when I want, but when whoever is caring for me wants. My days revolve around when I need to pee,as I need someone to do that for me. Ok, enough about that! On a different note, I’ve been considering the idea of miracles. The whole idea that me regaining any function in my body would be considered a miracle. Sure it’d be a miracle, but sooo many other things are miracles too. A miracle is something unexplainable and extraordinary. I don’t feel as though it has to be a positive occurrence either. Every new connection I make is a miracle. The fact that I’m alive after being crushed by a house is a miracle. The very accident that left me paralyzed, is in fact, a miracle. I mean how could you ever explain how one drives a car through a house? Every moment preceding that accident happened in the exact way necessary for that moment to happen. Sure what happened to me is in no way something to celebrate, but it is definitely unexplainable and out of the ordinary. If such a grand catastrophe can happen in just a split second, who says that I can’t recover in just that time? I’m sure as hell making sure every moment that precedes that miracle count. LOVE.JULIA.

Not so positive..

This won't be a very positive post, but bare with me. Not everything I think of can can be peppy revelations of positivity. Here we go... When your body works, properly, a lot of your movements are automatic. You just DO. On the other hand when your body doesn't do anything you want it to, everything you do takes longer and requires calculation. It also requires the help of another person. This...is frustrating. There's really not much I am capable of that doesn't require all these things. Even something like pulling my shirt down in the bak... I'd go about it by waiting for someone to be available, ask for help, lean forward just enough to still be able to hold my balance and then have that person pull my shirt down for me. If there re things on the ground, I don't just pick them up and clear my way. I have no choice but to accept that I can no longer move along that path. Yes, so I'm feeling rather sorry for myself, but who doesn't every once in a while? When I'm in one of these moods I just can't but notice all the things I can't do... I look at a sign by the elevator that reads "Use stairs in case of fire" and I think "Oh, well hey, I guess in the case of a fire I'll just sit in my chair in a burning building". Or when I go out and look around at people running around, jumping, playing, or even simply putting on a jacket on their own....I'm envious. I just so want to be able to do all those things... Alright, enough of that! A more upbeat should follow. LOVE.JULIA

Thoughts..

Alright, where to begin… if I’d just commit to writing more often I wouldn’t find myself at a complete loss of direction every time I start writing. A lot has happened in the last few months and the last couple weeks have been a haze (but I’m not going to talk about that). Let me just start with the most exciting news of 2012, well it was more the end of 2011, but it’s definitely made my 2012 and the years to come. I have finally…wait for it… got myself a buddy!! A puppy!! Her name is Sky. She’s a jack Russell/ wire fox terrier and she is perfect. She is 7 months at the moment and a complete brat and I love everything about her. I found an ad on the internet and for some reason when I showed my mom she had a completely accepting reaction and told me to go see her! Sky came from a litter of six, but I knew she was the one the moment I met her. Of all the puppies she was the first who tried so intently to climb up my wheelchair. She has gone through some training and can even pick things up for me now. She’s not only my buddy but my helper as well. Having her has given me many opportunities. For one, the guy who is training her does it free of charge and has become a wonderful friend. Secondly, I go out on my own every single day to walk her and it is amazing. I feel so much more confident and independent with her by my side. No matter what sort of stressful day I’ve had, I come home and can’t help but smile when she is so ecstatic to see me that she can’t control herself. Don't worry I’ll attach photos! One of the “major” things that have passed is the 3 year anniversary of my accident. And yes, I am still not where I want to be and am still eager to be independent. This anniversary was not particularly a tough one. It was contemplative… of my situation. Something I’ve continuously been thinking of is the way in which people view me, or people with disabilities (not necessarily negative by the way). Something I hear a lot is “you’re so inspirational”. It’s quite odd being told you’re inspirational when all you are doing is living your life just as you want. I wouldn't be especially “inspirational” if I didn’t have this disability. I’m not saying there’s anything wrong with it, and thank you for those who have told me this in the past, but interesting. I decided to use this view of me as an opportunity… as an advantage. It’s without a doubt that people get discouraged, and I am included among these people. What’s different though, is that people tell me how great I am doing for things that I may not necessarily be told for if I were able bodied. I get a little extra encouragement for my daily actions and I am grateful for that. For everything that I do, I get recognition. I am blessed for this and this gives me extra motivation to do my best… so that I can give myself recognition and believe that I AM inspirational.

love

Once again I haven’t followed through with the promise to myself to write more. A lot of the time I feel as though there’s not much to express. I can recall a couple of days that I felt were colossally disastrous, but opted not to write. Often times after the bad days pass they don’t seem as bad as I thought they had and am glad I didn’t write in my irrational state. Bad days happen and then you move on, but sometimes what happens stays with you. Like the night of my accident; I’m still stuck with the paralysis that came from it. How do you really move on from something like that? How do you stop it from defining you? A really dear friend of mine recently said to me, “how can expect people to look past the wheelchair when you can’t look past it yourself.” It’s not like this is a new concept to me and I’ve used it different contexts before, but it was the first time someone’s said that to me and it’s really stuck.
This injury has given me the ultimate challenge of loving myself for just me. I’ve been so concerned about all the things I can’t do and getting so bummed about it. I recently made a girlfriend who’s in a wheelchair but who has more physical function than me, which allows her to do things like make up, hair and dressing up. I spent a few nights with her and I was down about the fact that I couldn't do all those things… I felt less pretty. But here’s the thing, those aren’t things that make me, me and I just need to get over it. It’s just another one of those things that are easier said than done. I mean really, how do you do you reach a state of true self acceptance? I personally feel like it all starts with being true to yourself. I’m not saying you avoid everything that makes you uncomfortable because challenging yourself is important, but it’s all about doing what feels right for you. Something I’ve struggled with is asserting myself and doing things that I want to regardless of how someone else feels about it, within reason of course. You’ve ultimately got to do things that make YOU proud because you are who will always be there.
I am so lucky to have the people I do in my life to support me through this journey of life I am on. Thanksgiving gave me a chance to reflect on all the new connections I’ve made in the last few years. So blessed to have people that encourage and inspire me to be completely myself.

LOVE.JULIA.

...

So here I am after waiting way too long to write again. Let’s see, every time I do this, I have no idea where to begin…
Summers over and I’ve already started my fall term at College of San Mateo. I don’t know if I ever mentioned this, but I was accepted to University of San Francisco for this current term, but I guess I just ended up wussing out and decided to defer to the spring term. I’m still not completely sure if that is even going to end up happening, but that’s the plan for now. Just the idea of shifting my daily priority from trying to regain independence to school freaks me out a little bit… I mean, school’s always going to be there, right? So in the meantime I’m taking a couple core- curriculum classes online (which are proving to be quite a struggle in comparison to past classes I’ve taken online).
Okay, so lets get into a little about my summer. I took an online summer class and thought I had committed to an increase in rigorous physical training, but that took longer than I had hoped to pick up some momentum.
Oh oh oh! I spent my first two weeks without my ma since the accident. She finally got the chance to go back home and see her family. It’s about time she’s able to move around more freely. All right, so I wasn’t completely alone… my wonderful little brother was there to take care of me during the times that my caregiver wasn’t. I can barely express in words how impressed I was with him. I mean honestly, how often do you find a teenage boy who puts everything aside to take care of his sister? I’m not even going to go into the things he did for me, but I can tell you there are probably not a lot of people who would do this for another human being. I completely admire how loving and supportive he has been. I love him!
A couple months ago, I started playing… wait for it… wheelchair rugby! Haha umm the best way to find out what it is would probably be to search it on youtube. Don’t be scared, I’m definitely not good enough to be knocked out of my chair or anything. As much as I suck, I am thoroughly enjoying it!! The first day I went to go check it out I was terrified! It’s mostly guys just ramming into each other in a rage to get the ball. But these “scary” guys ended up being some of the most amazing people I have ever met. They are all quadriplegics and the majority of them are completely independent! I’ve been so amazed and inspired ever since I have met them. I’ve even made girlfriends! Awesooome. A lot of things have just changed since I started being involved.
I’ve recently made a slight switch in my goals as well:
Of course ultimately I would like to walk and go back to “normal,” but this is no longer my sole focus. What I really want from walking and being “normal” is to regain my independence (relying on another person to do absolutely everything for you can be demoralizing at times). I’ve realized that my independence does not fully depend on me walking again, walking would just be a plus. I truly believe that I owe this realization the people I have been blessed to meet in the last couple of months.

LOVE.JULIA.

oh life

It has definitely been a too long of a time since I’ve written anything besides an English paper. I’m not even quite sure where to begin… I’ll just start with recent events and stick in whatever event that pops into my mind. Unfortunately though, there’s not a lot that happens in my life besides school and working out.



On the workout forefront, I had a pretty extreme two weeks of physical therapy for the first two weeks of May. Wow not keeping things posted makes telling stories difficult. Ok, so in March I started going to this acupuncture clinic in San Jose that specializes in neurological disorders. The doctors of the clinic were invited to Switzerland to teach their techniques so closed the office for two weeks. The physical therapist that works there offered o stay with me to do physical therapy 8 hours a day for those two weeks. I couldn’t turn down such an offer so the brutal lifestyle of waking up, working out, going to school, working out and then to bed began. I got a little stronger… of course there’s not going to be a miracle in two weeks but I couldn't help but hope for something more than “I got a little stronger…” And it’s not like I all of a sudden decided to work out, I’ve been consistently doing it. 2-3 hours of professional therapy plus home exercises has been my lifestyle for the last two years. I’m frustrated, if you haven’t already noticed. Working your ass off is supposed to amount to something. I want something more! Here’s my dilemma, though, there’s no cure for spinal cord injury, best option is to keep your body healthy (extreme exercise has helped numerous people to regain movement), therefore I exercise to no end, but I’m getting bored and restless, but because it is the only thing I can do to help my cause it in fact is what I WANT to do. Ok so I sound slightly deranged, but I I’m hoping it conveys my frustration/ impatience.



As for school, it’s pretty awesome. I did really well this semester and even got into University of San Francisco and Notre Dame de Namur for this coming fall term. I was overjoyed. I declined for the fall term and asked for a deferral to the next spring term. I might be a little scared of going. Private university= full time school + a lot of monies. Possibility of recovering from spinal cord injury= full time workout/ therapy + a lot of monies. So which is it going to be? I do of course realize that my recovery goes under the ‘possibility’ category, but I’m not willing to give up on it anytime soon. I will walk damn it! I decided I’d go at recovery with full force for the remainder of the year and the start school in the spring with a less of focus on working out. It’ll be ok… I’ve been blessed enough to not have to think about anything other than getting better for over two years. I’ll make it work;)



Enough for now. I will definitely try to do a better job at this…



LOVE.JULIA.