MOVING TO WORDPRESS

Dear wonderful readers,

Due to frustrations in dealing with blogger and its constant crashes, I have moved my blog to wordpress. My apologies for the inconvenience this may cause you. Hopefully the new blog will be even better. I write this post because I know some of you use RSS readers and never actually visit the original blogger page. The blogger page will automatically redirect to the new page:

http://gradstudentwithlupus.wordpress.com/

Thank you lovely readers! I hope you all follow me to the new page.

love,
SR (gradstdntwlupus)

Invictus

Even as I write this, I am sitting on an airplane. Sometimes the urge to write overwhelms me, and I just cant resist. So here I am, blogging away on an airplane when I should be resting. (I’ll date this entry by whenever I post it, which might be a few days out as I’m unsure about my internet connection for the next few days.)

Anyway, let me get to the point. I just finished the movie “Invictus,” starring Morgan Freeman and Matt Damon, directed by Clint Eastwood. Now, as far as I’m concerned, you would REALLY have to screw up a movie for it to not be worth watching with those two cast in the leading roles. True to form, I was awed. Bedazzled. Amazed. (wait, are those synonyms?) The story is about how newly elected president, Nelson Mandela, united with the captain of the South African rugby team to use rugby to unify the country (and win the rugby World Cup). The movie was fantastic. You learn about Mandela and his philosophy, you learn about what South Africa was like when he became president, and you watch how rugby brought them together. Of course, that was by no means the end of the struggle, but tell me you didn’t tear up a little as you watched some Afrikaaner police officers go from suspiciously eying a skinny black boy to watching them hug the kid and cheer, and I’ll strongly suspect that you’re lying. If you haven’t seen the movie, definitely get on it immediately. WAIT – I meant AFTER you finish reading this post, goodness!

I am generally a fan of the heart-warming, sports underdogs beat the odds type of movie. I’m especially fond of the ones that talk about underlying social issues like “Glory Road” did.  Still, heart-warming is supposed to be theoretical, but I find that there are certain books and movies that actually manage to warm my heart. I’m sitting here feeling like my soul is glowing or something. Now, HIV debacle aside (the redemption for which I believe he has worked hard to achieve), Nelson Mandela is very, very high on my list of heroes. I had the honor of hearing him speak a couple months ago. Believe me, he has every bit of the presence you think he will. So that is probably part of why I’m feeling so inspired right now, but it isn’t the only reason.

As I watched the movie, I started thinking about heroes. It’s such a common question that we ask. Even little kids have a hero, be it superman, their mothers/fathers or a favorite sport celebrity. Still, I think we often forget that heroes don’t have to be famous. Don’t get me wrong Mandela is definitely one of my heroes, but I think we meet a lot of heroes in our every day lives that generally go unacknowledged. The parent that devotes her time to coaching her kid’s baseball team... The man who gives up his holidays to celebrate with people who don’t have families at the homeless shelters and soup kitchens... The people who devote their lives to the betterment of others – in hospitals, in schools, in neighborhoods... They are all heroes, and so is every person fighting a chronic illness. They are inspirations to everyone else fighting similar battles every day. This is hardly a new sentiment. In fact, I think if you watch the Twitter updates of the chronic disease community, you will see at least one post stating the same thing every few hours or so at the very least.

Now, dear readers, I’m sure you are very anxious for me to wrap up this post so I can free you to search for this movie. So let me get to my point. It’s a pretty interesting circle if you think about it. You tell persons A, B, and C that they are heroes because they find the strength to fight these illnesses. Meanwhile, persons A, B, and C turn around and tell you the same thing, but you don’t really believe them. So why can’t we acknowledge that we are heroes too? Why must hero-worship always be an outward love? You are your own temple, right? Ok, so maybe the problem is that it sounds a little self-centered. How can I sit around thinking about what a big hero I am? After all, if a kid answered “Who’s your hero?” with “I am!” they would probably be subject to a lesson on what a hero is followed by a reiteration of the question until they reported a more “appropriate” answer. But I think it’s a truth worth acknowledging. It’s not enough to help other people get through their days by reminding them how amazing they are. We must also help ourselves by acknowledging that if they are heroes for what they go through then logic dictates that we are heroes too. Everyone is interconnected, one can’t rise up without the other. In order to help me fight my battle, you must be strong enough to fight yours first. (I’m reminded of the airline safety videos: Please put on your own mask before assisting others!) So the next time you are raising someone’s self esteem with compliments like these, take a moment to remind yourself: you are a hero too.

Sunday Breakfast Club: CNN – Can Caring Make You Sick?

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

I meant to write about this last weekend when this article was a little more recent, but the “Lady Gaga + lupus (?)” topic overtook it. There was a CNN article on May 20^th called "Can Caring Make You Sick?" 
I think the effect our illnesses have on our loved ones are easy to forget about (I wrote a thank you post a few weeks ago). I’m not saying we’re selfish, by any means. It’s just that it’s easy to get caught up in the daily tedium of it all. I mean, look at all the things we have to think about every day: first we have to remember to rank priorities so we can allocate spoons, then we have to deal with everyday cares, cook (if we can manage) and eat meals, many of us have multiple med times, and all of this is on top of the debilitating fatigue, pain, stiffness, etc. When and how do we fit work/school into this madness? Well, your guess is as good as mine. Still, it’s no wonder that we rely so heavily on the loving friends and family we have in our lives.

Our strongest supporters are often the people most subjected to inadvertent abuse. Our anger and frustration at our disease (and at rude people who don’t understand) often gets misdirected at them just because they’re around when we’re on the warpath. The reward for their efforts to understand what we are going through is often a derisive, indignant “you don't understand!” They take on extra stress and work to make up for the stuff that we can’t do. And, it would be unfair to forget that they worry to no end. I’ve seen my sister cry after spending the night at my place and seeing what my joints are like after I left them to their gelling ways all night long. My mom spends all her free time researching my diseases and learning about treatments. I worry about them when I see these things. I do, of course I do.

Yet, until I read this article, I was worried about my supporters’ emotional health, but never to the extent that this article suggests I should be. I think I always wrote off caregiver health problems as limited to the people who are always lifting or physically supporting their loved ones. I didn’t realize it could have this kind of impact. Or, maybe, it turns out that I am a little selfish after all, and I just didn’t want to think about it because I just don’t have the energy. The fact is, it’s not just their emotional and physical health that takes a direct hit. They often put their lives on hold in order to help us with the things we need help with all the freaking time.

I don’t want to be that person, so this week I’m trying to find ways to help relieve the stress on my caregivers. They don’t have to be big gestures, but maybe little things would really help. So far, I’ve come up with simple things like calling them to tell them I’m having a good day instead of only when I’m having a terrible day and need to cry about it to someone. Also, some tasks aren’t as important as others, but they may not know that. So I think when I call in favours, I can be clearer in terms of what I really need help with ASAP and what can just wait until they have time. Most importantly, I think I’m going to try and give them days off once in awhile. Something along the lines of, “I’m ok today, why don’t you go out shopping with your friends?” I don’t know if they’ll do it, but at least I can try to promote that they have a healthy social life even if often don’t. I don’t know if these things will help, but a girl can hope.

So how about you, readers? What do you currently do to help take some of the stress off of your loved ones?