I'll keep this front up for as long as I can.
In the mean time, this sadness is eating me from the inside.
I'm just sorry I can't be stronger.

Keep Calm and Carry On

My dad called today to tell me he was leaving this Friday. It's the usual 2 day notice that I am granted and nothing more. I won't be seeing him for another 2 months. As his last obligatory words as a father before he departs (and don't hear from until he's back), he advised me to put aside some 'me time' and invest in my well being. I think this is something that I've been needing to hear from him, someone who has been part witness of this hell of a time... acknowledgment that I've been put through quite the pandemonium as of late. I haven't slept in what feels like weeks and I don't know how I'm going to reclaim all the time lost.

I think my brother is going to be okay for now. I've devoted more time to his healthcare than I have ever invested in my own...yet I still feel like I can't do enough. Finding doctors of all specialties, occupational, physical, and speech therapists that take his insurance, making appointments, attending said appointments, working as an interpreter for my sister in law, following up with all the health care professionals while taking my own notes of his progress, getting in touch with social workers to learn what his options are, keeping the family in the know, visiting him in the hospital everyday for weeks during lunch and then after work, and working on exercises together. Understanding his needs, informing and keeping him focused. I've been fighting so hard for him but I'm realizing that there is no end and I am feeling defeated. There is no cure. There is just waiting for it to get worse and figuring out how to work around it.

What words of encouragement do you tell someone who is chronically ill, when you know it doesn't get easier? How can you tell someone how to live when their sight, hearing, and speech are disappearing simultaneously? We're no longer referencing Helen Keller at this point. Imagine you are someone who has experienced life through all your senses and is slowly being stripped of them. How about swallowing...lets take that away and put in a PEG tube; no food or water by mouth. And strength and balance. Mix in delayed cognition and mental blocks. Frost on years of pent up anger and not a tear shed. Finally, lets plant you in a family that does not sympathize because they refuse to understand the circumstances - not a soul to turn to, except a younger sister, someone you used to be the cool big brother of but now the tables have changed. This is my brother at age 35. Someone who understands that he doesn't not have the strength and thereby is too afraid to pick up his 2 year old and play with her. So he watches over her as she sleeps because it's his way of protecting her. And this is the best part of his day.

I am learning that I cannot force help on my brother...when he turns away Home Care and requests therapists to stop their visits - I cannot be there to monitor him every second of the day. Although, I am JC's proxy I need to come to terms with respecting his decisions even if they're, in my opinion, not the best ones.

As somewhat of a side note, I'm reminding myself not to complain about my situation or about my everyday life in general. If anything has changed, it has been my threshold of withstanding people complaining. Yea, I am tired but JC is more tired. Yea, you had a bad day but JC can't catch a break. When I hear people whine and bicker, I think of how small and self-centered their world is and it's infuriating and upsetting at the same time. Because there is always someone who has it worse than you and the truth is, you probably don't have to look too far to find that person. For me, it's just a matter of looking at a family photo.

L'uke

It's been week 3 of learning the ukulele and I'm getting more excited each week as we learn new chords and progressions. Since I haven't found a career that I love yet, I've been able to divert my energy towards trying out new hobbies. But in general, I'm obsessed with learning new things.

Asides from a couple of years of piano that I took in my early teens to appease my parents, I have no musical capabilities at all (I have forgotten everything since then). And since the uke is only 4 chords compared to the 6 chords of the guitar...it's gotta be at least 1/3 easier, right? I'm so smart.

My class is at the NYC Guitar School located in midtown. Everyone walking in and out of the building has such a cool laid back vibe - no pretentiousness, just a love and appreciation for learning string instruments. I was a bit concerned that my attention span would prevent me from sticking around for the entire 10 weeks but Asha had signed up with me so it's nice to have some company as motivation.

So I'm playing a soprano right now, it's the tiniest form of a ukulele. I had purchased it off of ebay but I'm thinking of investing in another of better quality (and a fun pineapple shape) - mostly because my teacher had indirectly suggested that mine was pretty lame. When going around the class and helping the students tune their instruments on the first day, he had complimented everyone's choice of 'a good brand' or 'great quality' but when he saw mine, he said flatly: '...and some ukuleles need to be tuned more often than others'; and moved on.

All in all, it's a great way to invest an hour a week towards myself. I'm already looking forward to learning guitar eventually...so then I can take Brazilian Basics. THAT sounds amazing.

A photo of the restroom door at school:



















Yours in rock...Mary.

My grandfather was admitted into the ER last week after falling and losing consciousness for a brief moment. After getting bits of the full story together, I’ve been reminded once again of why I can never fully relax my nerves. Long story short, my grandfather may have a drinking problem which my uncle is contributing to – by (what I recently learned) secretly buying him liters of cheap vodka and telling him it is good for his health. In addition, he has had him sign life insurance papers so that when my grandfather passes away, the money will go to my uncle; the uncle who has disowned all of us - another all too long story.

Between coordinating my grandfather’s care in Amboy, finding a translator for him in the ambulance and at the hospital, keeping the rest of family up to date, and making my way down there to be by his side…I was exhausted. I’ve been caught in a whirlwind of family matters lately - after what felt like the dust was just settling. I'm distraught that none of my siblings put in any effort to help with the matter. My parents are half way across the globe and have not checked in with me. I'm sure they assumed if I couldn’t handle it myself, there was nothing they could do themselves. I guess they were right. But it's not alright.

I need a good paint session.

I think my brother is dying. And I am the only one losing sleep over it. Because I am the only one not denying it. My body acknowledges the situation and it burst into tears without a warning.

I know it. And I hate this disease. I hate it I hate it I hate it to the core.

In transition

The way my work days have been going, I am sure I will be hearing 'you look so different' as the first liner over and over from friends I haven't seen, which is unsettling...because the sensitivity of the subject, is still in effect.

I've decided that, all I need really, is assurance that I still look like my father's daughter...

Baking this little 'less than three' out

In the confines of my home, I’ve been baking. Problem (or beauty...however which way you see it) with baking is…you have to measure ingredients out and follow instructions. I’m that person who because I cannot follow directions (including spatial ones, hence why I am always lost), I never produce the same product twice. Like those muffins I baked? Well, enjoy them now, because they’re never going to taste the same again.

Pecan pie muffins & Honey lace cookies

Peanut butter chocolate oatmeal cookies

Sweet-milk biscuits (star-shaped!)

Lemon squares (being packaged, on their way to DWS). That box just screams 'love me!'

Everything was made from scratch and very easy. By keeping up with a routine of baking, I am shedding a fear of being in the kitchen and messing things up. Things don’t feel so foreign anymore and I feel less guilty about purchasing ingredients that aren’t my staple needs. Can’t say I did things perfectly (turns out you can’t replace rolled oats with steel cut oats – ::face palm::). I imagine things will come out better when I can actually taste what I’m making..or not.

More thankful than ever

Something I wrote 5 days into post-op:

This has got to be one of the most difficult and challenging experiences in my life thus far. This makes me sad, thinking that I have never truly suffered in life. Afterall, this wasn't a life threatening surgery and I received care from some of the best. Besides the fact that being wired shut doesn’t allow me to eat the foods I wish to eat, and speak the words I wish others would hear, I cannot do simple tasks like drink gulps of water, or rinse my mouth properly, or yawn. I am afraid of all this things. I have to take extra precautions so I wouldn’t feel the urge to sneeze/cough, or any sort of action to provoke uncomfortable results.

My first night at the hospital, in the recovery room, post op – I truly was unsure whether I would pull through. I kept phasing in and out, losing consciousness. I would wake up to throw up old blood each time through my wired mouth. They had to call the doctors in the middle of the night to check up on me. The nurse by my side that night was amazing. I asked for a piece of paper+pen to write down what I was trying to say while I was spewing blood. I wrote ‘I think I will be a bit nauseous later’, ‘what is your name?’. After she told me her name was Julia, I wrote ‘Julia ____?’. She said B**rone and I filled in the blank. Underneath that, I wrote 'Thank you' and underlined it twice.

I didn’t think I could think any more highly of nurses until I was admitted as an inpatient. Everyone was so kind that I had to agree NYP was the best around.

After Sharon mentioned that Kanye West had done great things during his month of being wired shut, I thought this was a potential given for me as well. It’s day 5 and the days cannot go by any slower. I wake up every hour in the middle of the night and pace around in my tiny apt. I have been hallucinating due to lack of sleep – that scares me too. I have done nothing productive even though I should really be concentrating on my healing. After my first night home, I was actually very scared. Very scared for myself and scared for Lev because he was taking care of me. One of my worst qualities is the fear of putting others in a precarious situation for my sake. Though I was in a lot of pain, I opted not to take any of the codeine. When Lev was running around trying to track a pharmacy for the medicine, I already knew I would never take it no matter no much pain I would have to tolerate. We were both afraid I would be nauseous. Instilling fear into someone is, in my opinion, one of the worst things a person can do.

Lev has been absolutely wonderful. I could not ask for anyone better. He had accompanied me to the hospital, visited before and after work each day, tried to keep me in high spirits, and brought me home. Since being home, he has run around getting medicines and extra supplies for me, made me food, fed, and bathed me. He washed my dishes and cleaned up my apt because he knew I was afraid of my parents seeing my place. When I see him crammed into my couch, asleep, I feel sad that he is doing this for me. But this experience has confirmed for me of how amazing I think he is, so for that reason, there is nothing to regret.

Parla Català

I’ve been studying Catalan; a language spoken by slightly more than 9 million around the world. Our trip to Barcelona made my heart flutter enough to sign up for a class this Spring semester. I fought my urge to find a practical reason to take the class (i.e, When will I use it? What is it good for? How will this help my future?). It’s funny when you spend your life needing to justify your actions with everyone, you start to do that with your own person. I told myself this obscure class (that is hardly offered anywhere) was for my well-being and it would involve fun learning. It was an opportunity I couldn’t pass on.

Thanks to my good fortune (and the coy referencing of ratemyprofessors), I lucked out with having one of the best professors I’ve ever had. As much as I sweat over interacting with people, I really believe in her teaching methodology – absolute and total immersion. Only Catalan is spoken in class and there’s always a fun exercise that requires all of us to speak to each other. Thanks to her positive encouragement, I’ve become a bit fearless of speaking to others in Catalan even though I am well aware that my knowledge is so limited and it probably sounds like baby talk when I open my mouth. In addition, it didn’t matter that I had no foundation of Spanish.

But why don’t I feel the same courageousness with French? Because I was trained in conjugating verbs and not in conversing with others! Quel horreur. I haven’t figured just yet how to combat this problem but it may call for an intervention…in the form of an annual trip to Paris. Oui, oui.

What would have been Saturday's post

I took out my Singer, dusted it off, and reacquainted myself with it. At first I thought it was broken but then realized it was simply that I forgot how to use it. Oops.

Resolution #264: sew a project a week.

Conclusion: I got the machine to work and sewed a rectangle with sloppy corners (picture to be posted later). It holds no purpose whatsoever. I was really practicing sewing straight lines but secretly hoped it would turn into something...because sewing involves a bit of magic, right? I may need to refine the bold assumption that I would be able to step-pedal my way through project after project. But this is a good start, because I genuinely can only do better after this first project attempt.

Go me!

What would have been Sunday's post

Lee, Laura, and I visited the Tenement Museum, on Sunday. It was my first time and their second. Lee swore that I would enjoy it and she was right on the mark! In fact, I instantly signed up to become a member at the end of the tour.

The ticket booth/gift shop/screening room are located at 97 Orchard St. - what appears to be a standard sized glass storefront found in the city. The tenement where the tours take place is located across the street at 108 Orchard St. There are 7 different tours to choose from, at $15 each. For an extra $30-40 (depending on if you are a student), you can become a member and go on all of the tours for free, as many times as you like. Going on the same tour more than once isn't as strange as it sounds because the museum has several guides who give the same tour but may provide different facts.

Visiting the tenement is much more than seeing what the inside of the building looked like or getting a closer look at the furniture of old times. Stepping into the apartment where families dwelled over a century ago was like a time warp. Being there gave me insight to how people lived in the late 1800's-early 1900's and it was humbling to be reminded of the tribulations immigrant families had to face when they left their respective homelands - a new language, having to acquire different skills to make a living, harsh living conditions, low pay, poor working environment, etc. Whether German, Russian, Jewish, Chinese (the order of immigrants who eventually called the lower east side their new home), it was the same deal for everyone. This was because everyone shared the same dream and believed in it.

I have forgotten what it is like to believe in myself, which makes me realize I can't expect positive change in my life until I change how I think. Didn't I tell myself to fear less? Just this moment, it has dawned on me that I am not much different from the Velveteen rabbit.

...

What would have been Friday's post

I watched most of Food, Inc. Friday night. Unfortunately, I was so tired that I fell asleep 80% into it. You would expect that I would have made some lifestyle changes thereon after. Nope. Rather instead, I mosied over to 'Five Guys' the very next day and ordered myself a cheeseburger topped with onions, mushrooms, ketchup, and mayo + fries (which by the way, despite the dozens of Zagat postings that were displayed, proved to be extremely greasy and unappetizing).

Moral of the story: Lesson not learned. Perhaps had I stayed awake during the remainder of the movie, I would have opted for a healthier meal.

I'm gonna work harder on this, because conscientious eating is number 49 on my list of the 5 billion things I need to change about myself for the New Year.

"100 Skills Everyone Should Master"

As an addition to yesterday's post, I thought this guideline of '100 skills everyone should master' found at mightygirl would prove to be helpful in case you weren't a resolution making but more of a goal achieving/list checker-off-er type of individual: click here for skills

I can confidently say I stand at 62% fairly confidently. I'm actually quite proud of this.

Happy 2010!

I was inspired to make a list of New Years Resolutions for twenty-ten. I saw this elsewhere, where they broke down the resolutions into categories of family/friends and wellness. I would like to do that and throw in an extra section for creativity/education, which overlaps a little with wellness but it’s just so important lets give it its own pedestal to stand on.

Family and friends:
Call my mom more often; we don’t have much to say but I think she’s happy when I simply call and let her know I’m still alive.
Pick up the phone when friends call; I need to stop avoiding people and acting as if I owe them money.
Send birthday sentiments to dear friends, rather than lazily resorting to texts and fb wall posts.

Wellness:
Moisturize my reptile skin daily and stay well-hydrated
Practice more yoga (1-2x’s per week)
Blog frequently (so far so good)
Keep a tidy home and thereby, keep a tidy appearance

Creativity/education:
Cook and bake 2x’s a week. Making ramen will not count. Adding an egg to the ramen also will not count. I am saying this with gritted teeth.
Read 3 books a month, currently cracked open ‘The Velveteen Principles”
Sew 1 project a week
Finish my painting (eventually)

My motto for the year: Fear less - Do more