There's rumors of there being a cure for people with my disability, Spinal Muscular Atrophy. I'm excited, but I'm hesitant. I've been waiting for this news for so long and although nothing is open to all of us with this condition the clinical trials will be starting soon and up until now there has only been good results. There have not been any side effects and so far the only limitation it has is that it cannot be injected into those that have spinal rods (such as myself and many others) but the pharmaceutical company working on this cure is already looking to alter it for those that need it. This advancement in medicine (along with my recent addiction to Grey's Anatomy) has made me realize that medicine is advancing at an exponential rate.
If you wish to donate to SMA research and the rest of the neuromuscular diseases please visit MDA.org
So it's been about a week since I have watched Grey's Anatomy and I'm definitely having withdrawals, but read on to see my opinion and thoughts on the show. As I said in my last post I was hesitant about watching this show because of the hospital anxiety I have, but I did some research about the show and found out that all the surgeries they show on the show are actually dead cow body parts and obviously fake blood and actors. Once I programmed my brain into thinking that the actual medical stuff was not real and focused on the scene ending or put more focus on the drama of the characters it was actually a lot easier than I thought to watch. I really enjoy the character development of Meredith Grey and Christina Yang, they are definitely my favorite! I love the plot twists and super intense moments, although let's be honest how could so many bad things happen to one hospital's staff! My favorite panic situation portrayed was the shooting, mostly because it was so believable--I mean if you think about it how many people would not go crazy after having their significant other be shut off from life support!!! I'm surprised I haven't heard of more people losing their minds over situations like these. It really makes you think to talk things over with your significant other and/or family when you are well to be better prepared for an emergency. If you chose to not be resuscitated or taken off life support you really should think about how that may affect your loved ones. It's also important to realize that if you do wish to agree to either of these then that is completely your choice as well--I say this for terminally ill patients who sometimes know there is no possibility of getting better and wish to end their suffering and prevent more costs for those that stay alive. Sorry for being so morbid, but this show really made my mind see the fact that these situations may occur and with my cripple mindset I guess I'm kind of used to thinking about the bad possibilities.
After that morbid paragraph I want to highlight the fact that Grey's Anatomy does an amazing job of highlighting the possibilities of medicine and incorporating faith in the show. It makes me so happy to see the doctors on the show strive for excellence and bettering the treatments to care for their patients. As someone who needs modifications to just about every treatment plan I really appreciate when the doctors try to find a solution to a problem and they are constantly innovating new ways to better treatment. It makes me glad to know that medicine has progressed and patients like myself have a better chance of surviving.
The sex scenes are pretty famous and according to statistics and even the actors that is how they get their ratings. I think it's a smart tool to gain viewers, but honestly it's not why I watch the show. I focus on the characters' emotions, drama, storyline, and medical experience more than I focus on their sex life. Frankly, I find it kind of gross that a lot of them play musical chairs with their sex life on the show, but I guess it keeps you guessing who they're gonna sleep with next!
My major complaint with the show now, even though I love it, is that Christina Yang got taken off of it. I found her character so compelling and I guess I related to her with my constant desire to triumph and achieve my goals. You've gotta hand it to her since she was the best doctor in that hospital! I really hope she comes back, but I guess we'll see in Season 11...
So as I've said recently Ali had to quit and leave her position as my caregiver, facing this extreme sadness I've had to resort to extraordinary measures. To feel like a part of her was still with me everyday and that she was not employed by some other place I started drinking coffee and watching Grey's Anatomy. The combination of these two is literally almost as good as having her here (well it's not really, but it'll have to do). The craziness of me watching Grey's Anatomy is that I've hated it since it started, now I feel like a horrible person because I never gave it a chance and I've been missing out on Shonda Rhimes' genius story development for the show. The thing is I hated for so long because over the years my hospital anxiety has gotten really bad, my heart rate is literally through the roof the moment I enter a hospital. Now I don't have photographic memory like Lexie did on the show, but I remember how I felt in the hospital: in pain, afraid, and confused. All these feelings made me miss out on my childhood, every time I was hospitalized and I hold a grudge for these feelings--I can't let them go, they have control over me. A normal patient would be given anti-anxiety medication, but with my disability I would end up breathing less, and since my lungs are usually the problem that gets me into the hospital the doctors chose not to medicate me. The only time I went to the hospital for a good thing was when my little cousin was born, and even that was stressful because my aunt was in a lot of pain from the c-section.
So I took swallowed a large gulp of my iced soy caramel latte (took me several tries to figure out what coffee I liked, Ali always drank it super strong so I had to dilute it) and pressed play on Netflix. In 2 months I have finished 9 Seasons!!! Stay tuned for my review of the show!
This post is kind of about Mexico, but not the political stuff because for one politics confuses me and two, I could not make an argument for either side publicly because I hate confrontation of any kind. So recently a few relatives received their visas to come to the US because their mom (my half-aunt) had a stroke last September and the probability of her ever going back to Mexico is really low. Therefore her daughter and grand kids came here, and before I continue I just want to remind you that I am extremely observant, I analyze everything, and I come up with conclusions all the time (by no means am I saying I am right about my observations, I am just simply writing down my conclusions). The kids appear to be experiencing culture shock, they look surprised all the time, and frankly a bit confused. Their confusion mostly comes from seeing what a selfish society we are, these kids are SO polite and they appreciate everything! They have never even met me and they greated me with a hug, that's saying A LOT when on a day to day basis people seem to be afraid of encountering people with disabilities. It wasn't just the interaction they had with me that made me see how they have different customs, but even when it came to dinner, unlike some people (myself included sometimes) they did not protest what they were about to eat, they ate it all and cleaned their dish. Once again, I am reminded of the little things we take for granted. Ironically, I also found out that water, trash, and television is free in Mexico City, where here it is ridiculously expensive and rising. Like I said I won't get into the political because my brain can't handle it, but out of pure empathy I do feel sadness for all countries suffering either because of war, poverty, or diseases. Count everything you're thankful for and you'll see it adds up!
I always used to think that growing up meant life would get better, I would accomplish more--I always equated age with an upside down parabola. What I mean by this is that life was supposed to gradually increase in quality at a steady slope and then at the age of 65ish it would start to decline. The best part of the slope had to be from 18 to late twenties, it's were it would be evident that the slope really started to gradually increase. The thing is math--a subject I loved for so long--totally was proved fiction when I started to apply it to life. You see not only is life completely unpredictable and not at all like any math function, but it just has no 100% certainty. I believe in statistics as much as the next person, but the thing is outliers exist in this crazy world. For example, my disabled friends and I have x probability of living into our twenties, with every surgery and illness we have been told it would take x amount of time to heal, the odds are often not in our favor, but the odds can be wrong. I was always so sure that if I lived to be 18 then life was supposed to get easier, I was supposed to develop a foolproof way to deal with being disabled and take control of my life, spoiler alert: I could not be more wrong! It's not that life has become more difficult (or maybe to an extent it is), the real problem is that new questions and worries take over the old ones. It never ends, which is good because I want to be alive, but it's also insanely confusing because it literally makes the struggle very real.
So in conclusion, life is difficult and it's not a math function by any means, and frankly statistics can only give you so much comfort (or most often in my case: doubt) that it's all just up in the air and that is why we should always live in the now.
Oh just in case you're wondering why I sound so borderline like a crazy analyst, a lot happened in this last year of school that makes me look at the bigger picture and realize I'm immensely thankful and blessed to be alive, but I'm unsure and confused at what's next. Ali had to quit being my caregiver so she could financially progress into the next stage of her life (which is very exciting since it's marriage!!!), but it makes me feel out of control because caregivers really do not earn enough for the type of work they are doing and I financially cannot afford her to come back (fingers crossed I will eventually). Secondly, my chair that I have had for 18 years (since I was 4!!!) broke down right before graduation and getting a new one takes several months up to a year. I guess it's kind of my fault I didn't get a new one sooner, but since it kept working I don't think it would have made a difference to the insurance company and they would have probably denied my request anyway. Thirdly, I have been applying for jobs and I have had no luck yet and I feel like the government has complete control over me once I do start working because I have already been told that since I receive SSI I'm basically monitored by the government. Ugh it's like the government that helped keep me alive all these years is now confining me to their system for life. Sadly, another camper from Camp Promise passed away this year and that's when it all sinks in: what's really worth worrying and being annoyed over when there's a life out there waiting to be lived: it's all about the moments that make it all worthwhile! :)