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Monday, December 26, 2011

Wat! The holidays are over, WHAT HAPPENED?

Well, we survived another Christmas! In the last 5 or 10 years, every Christmas has been so extraordinarily different from the one before it, I never know what to expect, or, who we!ll be with. This year was no different. My mom and I were together at her home, where I grew up in Midcoast Maine. When I arrived, I declared. That even though it was just the two of us, were still doing stockings. For some reason, the whole experience of having a ridiculous goody bag to open before you sit down to breakfast, is something that I genuine,y love. After breakfast of almond torte and other assorted goodies, we ambled over to the tree in the window, and open-end many assorted goodies, from friends and family. I knew I wouldn't have a lot to open, as I'd asked my family o help me purchase a plane ticket toColorado, so I could do some adaptive snow boarding with a friend, I met last year at Sugarbush in VT, and ran into this summer in Winter Park, CO at the No ?barriers Summit, my.Ant brought me to over the summer. She invited me to visit, so now, I'm trying to make it happen!

After our little family Christmas, my mom and I headed over to the neighbors family camp, for their family Christmas gathering. I wasn't prepared to attend another Christmas, and felt slightly guilty when I received gifts, but hadn't brought any. The company was gift enough for us, as it was so much fun reminiscing about old times, and getting the latest news on the family members who couldn't be there. We all enjoyed a fabulous Christmas dinner of ham, stuffing, green bean casserole, squash, and the BEST chocolate creme pie Ve ever tasted. I love chocolate, but normally, the Che chocolate creme pie is nothing to write home about. But, this one was exquisite, very rich, and somehow light. I admit, if it had been my families dinner table,I might have challenged them all for the entire confection.
After Christmas, there were still so many things to be done, people to seen, etc. I accompanied my mom to a couple doctors or medical appointments, and have been so proud of her for sticking with the people and programs she feels will help her, because having your life examined by multiple people, for several reasons is no easy task. And then, somehow processing that information to decide a plan of action you feel comfortable with, is no easy task. The new family joke, I've been informed, is that apparently, my mom, my aunt and I will all be able to have walker wars. My mom asked me to bring my wailer home for her to use, but it was deemed unsalvageable by her therapists. I assumed that might be the case, given, what I put it through every day, for over a year. I dare say, I could probably write a book about the adventure I somehow created for myself with that thing. Then, I could do a sequel about the baby less jogger. Wouldn't that be a fun read? Well, if nothing else, interesting...
I'm am so happy to see my mom putting in the necessary time and effort into her rehab. As mindless, depressing, and frustrating as it is, it makes all the difference in leading a happy fulfilling life down the road, because you know that you've given your best effort, and you are, where you are that day because you put the time in, and did the work. That aspect of being home was incredibly rewarding.

Tuesday, December 20, 2011

On the road...

When I was a kid, I grew very a cccustomed to making road trips with my family members, and/or neighbors, and friends. I really miss traveling, seeing the world from other perspectives, and also the many sights, pleasant and not so pleasant. Having spent over a year without the ability to visually process the world around me, has really given me a tremendous appreciation for the ability to see, period. Yes, I'm still insanely frustrated. That I can't drive, but am still holding out hope, that won't always be the case. Only time will tell.

After a ridiculously busy week, my Dad arrived around 730 Friday eve. We zipped over to Boves, for tasy plate of pasta. It has a very Dinerish ambiance, but they specialize in pasta dishes. I was so pleased, to go there because when're he visits, we always hit the same 5 or so restaurants, and there are so many fantastic places, that are generally pretty reasonable to check out. Trying to break the grain here.

Saturday morning, we intended to hit the road for NYC, but I had dropped the ball in terms of planning anything, so, we headed straight to New Jersey, had dinner at an old family haunt of my dad and his brothers. The next day, we reconvened at my Uncle Stu's 50th birthday party. I never really got to closely know my dads side of the family, and while they've all been really supportive of my injury and progress, it's really difficult to envision, going to a large gathering, family, or not, where you don't personally know people, it can be somewhat intimidating. I had intended to wear my christmas atrocity outfit, but chickened out, a) because it wasn't a holiday party, it was a surprise 50th bday party for my uncle Stu, and, because I didn't reallly have a feel for the crowd, and felt nervous about standing out more than I already do. Admittedly, I tend to not give people the benefit of the doubt, and it kind of, well, bit me in the ass, because, people were very open, and welcoming. Several people approached me, and told me that they had read the blog, back in the days when Sean was telling

my story to all of you. And speaking of, I've thought of him a few times on this trip, mainly because the last time I was down this way, I was with him, and we passed his hometown on the highway. Weird, when things you work so hard to not think about, or personally address, come up and 'bite you' when you least expect it. Totally unpleasant, as I also met my cousin, who is about my age, for the first time too. Growing up, I never really had any opportunity to connect, or meet that side of my family, because my parents didn't really want anything to do with one another. Thankfully, they've resolved some of their issues,
and somehow managed to work together, in my best interest, when I ended up fighting for my life, Ive always felt that everyone did an amazing, and tremendous effort into coming together to support me, which I am unbelievably grateful for. It's like you don't realize hoy fortunate you are, until something profanely horrendous happens to you. As, I look back, and read my words, I feel they can be taken multiple ways, but my intent behind those words is only that I can't believe how supportive people were then, and often still are today.
Well, that's my weekend in NJ, now I'm back in my hometown, hanging out with my mom.
She's had unrelenting misfortune, or difficult sequence of events in the past few years, in dealing with her only daughters brain injury, losing her dad, having a seriously long-term relationship end, enduring chemotherapy and a mastectomy from breast cancer. She's getting back on her feet, so I'm super proud of her, but crazy jealous that her rehab. Is so much quicker than mine. I love being home to support her, but it hurts so much to watch her struggle, and get frustrated with the amount of time it takes to do things. I totally understand that, because I take a eternity to anything physical. Even writing, I think a million times faster than I can write it down, so even blogging takes multiple hours, which sucks, but I. Just have to tell myself the more I do, the more I do.
Yesterday I went with my mom to go check out her options for going to a gym, to do some PT, and help her rebuild some muscle. Of course the PT office at the gym was closed, so she headed to Xmas party with her co workers, while I stayed at the gym. After. 2hrs had passed I was so incredibly hungry, I couldn't function. My mom picked me up, and announced that. I had a teeth cleaning appointment. It took me couple moments to realize I had just changed dentists, and had this done recently, but I still had to go. Back to the office, so my mom could get hers done. I, unfortunately get somewhat irritable when I'm hungry, and demanded food, as compensation for waiting. Looking o home. It's still very comforting, and I appreciate my roots so much more now".
Today, I was soo excited to see my closest friend of all time. I feel so lucky to have the friends. And family that I do. I forget that occasionally when I'm back in Vermont, because I have support there, but it's not nearly as extensive as it is when I'm home. It's like a constant. Joyful stream of visitors this morning. My mom and I made pancakes and bacon, then her neighbors stopped by, then he home health muse, then my friend, who just came home from fantastic French horse and farming adventures. I was so envious, listening to her tales of life abroad with horses, but very happy they had such wonderful adventures, and even happier to see her again. While walking down the road, we got close to the river I heard someone call my name. I peered into an old lot with a camper, and recognized an old friend from childhood, who'd, apparently decided to. Return to the homeland to settle down. It was really fun to catch up, and see an old face from childhood. We both used to get dragged to her stepfathers auctions, and. Do our best to cause random annoyances, like switching tags, and misplacing things. Looking back, I'm sure that was insanely annoying for. The adults running things. I don't prefer to remember. Myself as the little devil, I apparently was. It's funny how you can always count on family. And friends to remember your finest and not so finest moments. Happy Holidays to whomever reads this! Wishing you a very joyous and happy. Holiday season! Thank you for your support!

Friday, December 9, 2011

Finally Friday...

. I woke up crazy late, just missing my friend who I'd made plans with to pick me up for brain injury support group, bonus, I'd also forgotten to charge my phone. As soon as I was awake enough to realize the absurdly late time that it was. I left my apartment to walk across town, to the meeting. I. Was 3/4 of the way there, when I heard from behind me, "Courtney! I am so mad at you! I just went to your house, bla, bla, bla. It was the gal whose Iucky enough to get paid to put up with my crap, and make sure I'm carrying out my random tasks that I'm supposed to carry out each week to get off the waiver program. Naturaly, I don't always respond kindly to being prompted to carry out tasks that I rarely have a vested interest in, in the first place. I didn't. This is a grat thing, but I've always had trouble appreciating it. I didnt loose the ability to look after myself, it's more to me like I forgot how, and now that I have a team of people, with whom I largely disagree,yo help me get there, wherever there is. it's becoming ever so infuriating. I'm being encouraged to just get over the hump, by basically placating the program, until, I'm 'released'. In theory, this sounds plausible, and more time effective, although, now that I'm exercising my right to express my thoughts, I seem to be having a hard time not expressing anger, disappointment, vulnerability, resentments, etc. I'm trying not to step my own toes, and still express my criticism in a constructive manner. Not really a talent I posess. Oh well, you win some, you lose some.
Moving on, I finally made it to support group, which was awesome today, because the facilitator, Anna, had lined up a somatic specialist to give us a more clear ,perspective on how the brain communicates with the body to carry out movement processes. I was very interested in listening to this speaker, and was pretty upset with myself for having missed half of the presentation. I more or less got contact information, and came away with an trest in pursuing this type of therapy. There is such a resource of more holistic forms of medicine in this area, I just wish it was recognized by state and federal funding sources.

After support group I wanted a mocha, so I got my little caffeine fix, and then we headed back to my apartment to take care of some of the tasks I have profound difficulty getting myself to do. Today, this meant finding an application for my iPad thatbwill ding, and remind me do whatever I'm supposed to get done. Honestly, I don't see myself using this tool. I'm sure it's very helpful and convenient for certain people, but in my little world, I'm not interested in carrying around a prosthetic piece of equipment to reminding me to do random things. In the world I want to live in, and used to live in, you gained from the things you did well, and in a timely fashion, and you suffered from the mistakes you made, but you also learned from those mistakes, by having to figure out how to pick yourself up after you crashed and burned. These programs don't have that capacity. Someone always intercepts whatever I'm doing to 'save' me from whatever disasterbIm about to cause for myself. This is helpful in the moment, but is actually harmful in the long term, because I wasn't able to realize it for myself, and then Ill always need to depend on someone else to bail me out of my problems. Awesome.

Oh, look, I'm still ranting...
After support group, we had a fantastic outing to goodwill, to hunt for tragically atrocious holiday outfits, for respective holiday parties. Some of my friends from college throw an ugly holiday sweater part every year. I must admit, I'm pretty pleased with my find of a red sweater with what is more or less discernible as santas face, holding up a mug of a frothy beverage. This is quite appropriate for this crowd, although, I returned to my apartment with my find, pretty pleased, and my roommate offered me a sweater, that was exactly what I had been looking for, with an embroider christmas scene on it. So ugly, it hurts to look at it for too long, because there is so much detail. I have a difficult choice to make now...

Thursday, December 8, 2011

Getting through the week...

Never a dull moment these days... My week started off, with me arriving at my internship 3 hrs late because of miscommunication (what else is new). And some intriguing conversation following a spiritual chanting group Ive been attending. Tuesday was my psychologists app, which I've already gone into enough detail, with my frustrations regarding that part of my week. Tuesday eve. Is photoshop class. Wednesday was meeting with my case manager at 9, followed by a meeting with the woman who oversees my work exploits, to discuss how I want to proceed, and to finally orchestrate the correct paperwork, in the correct sequence, so that I might finally see theb$5/hr paycheck from voc rehab, I'm apparently supposed to be getting. Oh wouldn't it be nicer. I hope were finally on the right track, but I'm not holding my breath after 3 months. The experience in itself is priceless. To have endured 3 painstaking years in a physical state where professionals just weren't able to accertain the fact that mind was actually viable, just the operating mechanisms to express it were out of order. It was by no means in great shape, yet still vastly more intelligent than It was ever given credit for. And then there's the fact I most often give other people the benefit of the doubt. If there's a problem with something, I would venally accept the blame, as I didn't realize everyone makes mistakes. After so many days of your disconnects, failures, and weaknesses being pointed out to you repeatedly, I can't not assume it's an unusual pattern. Everyday, something is a struggle, but I'm finally putting prices of my old self back together, and had my ah-ha moment, when I realized that no one has perfect days, where all cylinders are firing in the correct sequence. In hear day in and day out, that these programs are onl here to help me ge back to being a self sufficient person. Instead of a clear path from A to B, it's quite possibly the most mind-glowingly, I'll-conceived, haphazard path ever conceived. Why because the w
Apparent way to fix a problem, is just to cover it up, and possibly pretend it's no longer there. And people wonder why were facing such economic devastation right now? Curious? Not really. I'm probably repeating myself, but I can use my 'get out of jail free card' because I have a brain injury. Oookay, I'm clearly still up in arms, look out world...
Well, today is Thursday, I got up and spoke to my dad on the phone. When zI ended the call, I was suddenly struck by a compulsive need to clean my apartment, anyone whose ever stepped foot in my little world, is well aware that I am not a neat freak, of any sort. My standards of cleanliness, equate to being able to see the floor, and trying not to have mold growing, at least visibly. Am I proud of this fact, no. Am I aware that everyone has different standards, yes. Do I try to maintain a passable standard of cleanliness to keep myself out of harms way (literally and figuratively) oh yeah.still crazy frustrated about being emotionally willed to live by someone else's standards. What's even worse is when the people who are paid to mind wash you into believing these guidelines (regulations). I say it that way a because they're presented as guidelines, but if you have any reason to counter these guidelines, you need to to prepare yourself with at least 3 definiveve reasons, as to why, specially you object, and alternative methods you propose to to provide yourself, and hopefully others with a more amenable solution. The real key trick, however, is to figure out how to present yourself, without coming off as egotistical, self-obsessed, or threateningly, in any way, shape, or form. When you challenge someone whose life's work is based on helping others, the last thing you want to do is make them feel like they're not appreciated. I wish that I had been able to put that together so, so long ago. Weirdly, it seems to be that simple. Why it isn't more clear in our society, is a quandary I may always have.
After my OT session, I needed to go grocery shopping. A typical week, I spend about $40 at hannafords. Which is not very much con siding I do my best to eat more natural or morganic simply because I'm not interested in finding out how some molecule that has been subatomically rearranged 9 zillion time is going to affect my body negatively. Based on my family history, I'm pretty certain I'll wind up with cancer at some point. I'm choosingvto put my efforts into taking care of myself now, to better my chances down the line. I hope it's that simple, even though odds are, it's not. We have created acworld that is too complex for our own good. Yard, Inkeep going off on these tangents, and forgetting about the actal story I was telling.
I do my best to attend a aqua fitness class at the YMCA every thurday. This is one of the best things I've done for myself, physically, it basically require my brai to coordinate my appendages when I tell it to. Which is not something I'm good at. The left side of my body responds way slower, and much more spastically, than my right. Being in the water, wearing a floatie, offers me resistance, and a much safer medium for me to try and move around in ways that I used to. One of the women, who often teaches the class, has taken a shine to me, and will directly ask me questions, offer suggesttions, and now everyone is really accepting of how I maneuver in their world, at least in that setting. Which is so cool, because sometimes all it takes, is one open mind. Who says were not herd animals? Ugh, case in point. That's all for now folks.

Sunday, December 4, 2011

So much to tell...

If only I could manage to blog everyday, I'd hoped to create a kind of journal from my posts, but I get so easily sidetracked, so here I am, after 3 weeks. My Thanksgiving was great, even though all of my preconceived 'plans' fell through, and when I realized how things would unfold, I shut down a little bit. I was really hoping to go home to Maine, with my stepdad, however, Id been warned ahead of time to not share the plans of possibly coming home, so it would be a surprise, and also so no one could be held accountable if plans were changed. I find these plans so frustrating, as Iv'e tried to make plans sand backup plans. I was very fortunate to receive another invite 2 days before and partook in a Flynn family Thanksgiving. My mom, her neighbors, who are like a second family, and my stepdad all showed up in a little camper van. I hadn't seen my mom since September, when she literally appeared to be on deaths doorstep, weighing under 100 lbs, every bone visible under her pale skin, as she had lost so much weight from how sick chemotherapy had made her. It was such a releif to her pushing her way back to her vibrant demeanor. I am unable to express how envious I am, of her rehab stint being as short as it was compared to mine, it's an utterly, disgruntling, frustrating experience, I sincerely wish that we could all be spared from rehab. Most days I am grateful to still be here, but I've spent the last 4/12 hrs picking myself up every time I fall, pretending that I'm not able to understand what's going on around me,, because no one actually understands what I verbally say. I feel like I live in a world where only the people who are actually willing to put the additional time and mental energy into what I say to them, are the people with whom I specifically make an effort to either maintain a relationship with, or in the case of my rehab. Professionals I put less effort into the asisstance they offer. However, I wasn't really aware that I had already been approaching certain team members this way, well at least to my own detriment. I feel like I'm constantly working myself, to get back to where I was 5 hrs ago. I think the biggest reason I prefer to hold everything in, is because I despise the reactions of shock, pity, and even sympathy. Although, in the cases where I do start to trust people enough to open up, it tends to be overwhelming for them, and me. It's easier for me to only look forward and not dwell on everything that I had and loved. My story has taken a different path than I'd ever imagined, but I need to embrace it and move on, because were only as good as what each of us does for ourselves and others.