Archive for December 2011

End of a Wild Year – December 27, 2011 by Esther Curtis

December 27, 2011

From its beginnings, 2011 was a wild year. Wow, we did a lot here at BIAD. We held a Snow Ball Banquet, we had our 20th Annual Conference, we did a new pilot program: The BIAD Art Club, we had our first billboard on Route 1, we held our annual Crab Feast in a new, more appealing place, we hosted the first “Embellish Your Melon” fundraiser in Dover, and a half-naked man painted himself blue and ran a mile for brain injury awareness. Now THAT was a run-on sentence.

At the end of this year, I feel very tired but very, very satisfied. Why? I have seen the best that people can be. Whether it’s Kati, who hauled out her entire family and all of her friends to support “Embellish Your Melon” or Rusty, who organized the entire Crab Feast almost by herself, or Tim, who isn’t around much but will step in when we need him, deliver coffee pots or move tables without a single complaint, or Jason (the blue painted man) who decides to put his personal pride aside in order to turn heads… I could not ask to work with a better group of people.

I am excited for 2012 because I see the new BIAD team already beginning to take shape. Although there’s no money (yeah, we all know it) and it’s not flowing in the way it should, there’s a lot more to running a nonprofit than that. The successful nonprofit has a balance of fundraising and program development, and we’re working on both sides of it. It’s not going to be easy. Nobody said it would be.

The length of time that I spent writing this blog entry has cost our organization $5.00. I’m closing with these thoughts: Though our path forward may be difficult, but it will be laced with priceless rewards. With every goal we reach, we will become stronger and more knowledgeable.

 I’m so looking forward to another wild, exhausting year.


Tracey’s Conference Diary Entry #5

December 20, 2011

I haven’t written an entry for a few weeks – hold on, I’ve got a lot to say!  I’ll try to keep it short.  I guess you can sum it up in one word: realization.  As I go farther and farther on this “Beyond Rehabilitation” journey, I am making new discoveries and being reminded of forgotten road bumps.  As I spend more time with our keynote speaker, Doug, I am more and more energized: more confident I can really expand and improve upon my own life. He never gives up on himself: he wants to see how far he can go; what his body will do. Maybe I need to start thinking that way more often.  Sometimes, though, I just get tired. 

 I wonder: if I am so close to brain injury, how can I live a life outside of it?  Remember, I have a lot going on at BIAD – right now there’s not much time for other things I enjoy.  That question looms even larger because I am working with Dr. Trent Ryan, functional neurologist, and his friends at Concord Medical – just another patient who goes through various therapies and treatments three times a week.  I think these things are working!  I appreciate the willingness there to tell me why they work, too.  I know I need to take advantage of that by asking more questions about the various treatments.  After all: it’s my body, and I should know what’s going on with it.  That needs to become a more important part of my life.  I want to be well-informed about my various systems.  It’s pretty fascinating.  There’s a fine line between knowing your makeup and how you can change it and letting that piece of you rule.  I suppose the more you know, the less it can control you.

 I expend a lot of energy telling people to separate themselves from the TBI world: don’t become the label – but I myself haven’t gone through this rehab business for so long I’d forgotten how invasive it can be – and how defeated you can feel when you know more would come of it if only you followed up at home…if only the rest of life didn’t get in the way.  Definitely does give you a boost in these chaotic times, though: you can more smoothly and easily resume what you had to put off for a while. Knowing exactly what is happening and why is your personal doorway to shaping and scheduling your own rehabilitation. That’s another bonus to knowing what’s happening.  Of  course, actually doing what you should s much better than just knowing what you must do! 

I’m having my second Tai Chi class tomorrow, and haven’t really been able to practice -hardly at all. If I had practiced my tai chi more, I probably would have gotten more from physical therapy at Concord Medical today. Sure, I have valid reasons for not doing this; December is the Month of No Rest for nearly everyone.   But still…I suspect I could have prioritized better to get the most out of what I DID manage to do.

Even without the get-ready-for-the-holidays, finish-up-before-the-new- year scramble, my life is about my exercise, my nutrition and BIAD… and now, officially rehabilitative stuff. How do you avoid making your health issues your entire life when they take over your time?  I think the answer is this: do not let the way you define yourself be controlled by physical elements. Time is one of those.  That’s a pretty easy thing to do – controlled dissociation.  Be You in spite of therapy – they are two separate worlds.

Another thing I’m realizing has to do with time, and hasn’t even gotten up to normal life!  When you’ve got so much to fix, and every last bit of that takes time and concentration, what do you do?  Like I said before, I haven’t had time to do things I not only enjoy, but are really good for parts of me that have gone bad.  I guess you have to decide what is most important to be repaired soonest – what is going to enable you to do everything else more efficiently – and concentrate on that – but give some time to maintaining the abilities you have in other areas.  I’m really beginning to dislike the brain.  One bump and a thousand things go wrong.  We’re all stuck with a brain; this impossibly high-maintenance date, but some of us have to endure the accompanying whining and pickiness more than others.  You’ve got to play little games with it; deceive it sometimes.  Why not?  It does that to you.  Sometimes you can fool it by doing an activity that addresses several imperfections at once, that doesn’t even seem like rehabilitation – that’s what I try.  Defeat the brain! Just make your head THINK you are focusing on one issue – in reality, consolidate; multitask.  Oh how stealthy that would be.  Oh how “easier said than done” that is.  I’m working on it – more later.

Tracey’s Conference Diary Entry #4

December 12, 2011

Yesterday I had my first tai chi lesson in many years/  I rediscovered how aware you can be of weight distribution,; how amazing it is to be sensitive to all the muscle groups within you and exactly how they are working together as you move effortlessly from one position to the next.  Well…how Jack Solchurch moves effortlessly.  Of course I am incredibly ignorant as to what I need to put where and how much I can lean on it or not.  And I have to repeat the simplest movements over and over in order for the momory of their proper sequence brands itself on my mind.  Jack is going to be a presenter at the conference.  I am hoping that if he spends months working with me, he’ll have a deeper understanding of the reasons tai chi is so much more difficult for me – or many with a brain injury – to do than an average practitioner.  And I am going to spend a lot of time out of class practicing what I learned so that I can get that small portion of what I will know to stick in my head.  I don’t expect to be effortless by March – but I do plan to be a lot better off than I am right now.

Let’s talk about pain and frustration!  Like the scale, these things are my enemies.  I exercise pretty intensely: I know I have a long way to go before I can effectively approach straight rehabilitation (rehabilitation My Way, that is) because of bad habits I’ve developed.  Brain injury does not make me eat junk food (I have totally stopped that, by the way – big triumph).  Brain injury does not make me live in a state where I can find nothing.  I know this because I believed fervently in disorganized  mess before my accident – I just didn’t have so much stuff or responsibility back then, so it really matters now.  I haven’t suddenly become the Queen of Clean and perfectly Filed – that is a very intimidatingly massive barrier, as well as lifelong habit.  Unfortunately it makes everything really hard.  I would guess I waste at least a third of my time and energy looking for things and doing unnecessary stuff.  I haven’t got so much energy to waste!  Eating well and exercise is beginning to have a positive effect on fatigue, but reducing what causes the initial stress and tiredness just might help, too.  So that is one of my future tasks: work on what saps my energy; the energy I need to carry on this Beyond Rehabilitation  challenge.

Tracey’s Conference Diary Entry #3

December 12, 2011

I am taking riding lessons.  I used to ride whenever possible – was obsessed with horses.  That was before my accident.  I had equestrian therapy for a while afterward and have been on horses a few times since then, but I’m not an expert by any means.  I “won” three lessons at the Embellish Your Mellon silent auction.   I’ve only had one lesson since then but Wow!  How could I have neglected my longing to be on horseback?!   I would love to go pony trekking (wherein you spend hours on a horse each day, riding across beautiful countryside) in late spring.  Instead of saying “Wouldn’t that be nice” I’m actively preparing for this adventure; exercising on a horse gait simulation machine, as well as doing other coordination-improvement stuff, and taking the riding lessons  I went on a trail ride last week – Thanksgiving Day – and was astonished to find how much easier the ride was that it would have been before I began lessons, and certainly before all the coordination/flexibility exercise.  I may not get to go pony trekking  when I hope to(there’s a lot going on that time of year I need to be here for)  but even so: I’ll be able to when the moment arises and I’ll be much more comfortable and coordinated whether I’m on a horse or not I’m going to look into the possibility of more lessons at another stable, too.

I’m also paying attention to what I eat.  Some foods make me feel terrible.  I’m avoiding eating things that make me tired, depressed, generally uncomfortable, and guilty.  I’m definitely not one of those “I lost twenty pounds this month!” people; I am not going to go hungry or stick to one food group – that’s just not me, but I am cutting out what doesn’t work for me and really enjoying what does.

The scale is my enemy.  Whenever I step onto it, and it tells me I haven’t lost an ounce, even with all the exercise and good-for-me food, the fact that I am so much happier with more energy, that my clothes fit better each day, that I am incredibly more steady and coordinated and healthy, all the positive evidence becomes meaningless.  I’ve decided to step on that scale just enough to check progress and let me know if I need to adjust my wellness program.  Any more sends me the false message “this is all for nothing.”   One thing my weekly scale visits have made me think about, though, is: Am I doing a good balance of activity?  My emphasis is on strength, coordination and flexibility.  I am not doing much aerobic exercise: getting my heart rate up once in a while might be a good idea.  Today I did the ultimate (for me) aerobic exercise: I went swimming!  I elevated my heart rate…and discovered my body has forgotten its parts need to work together….and I’m not strengthening other parts that really need work.  What a wonderful disaster!  I can’t wait to get in the water again.  I’m glad the lifeguard didn’t question me and my little blue kickboard amongst all the fancy lap swimmers.  Sometimes you have to do what you have to do…and just smile (I’m learning, Doug).

I’m doing other things – working on developing and improving other facets of my life – Beyond Rehabilitation – and I will write about those in consequent diary entries.  My focus in this entry is on the physical as pertains to me: more importantly, the even sharper view is on life Beyond Rehabilitation.  Imprisoning oneself in a tiny world of TBI, without looking outside it, is as destructive to the survivor’s , caregiver’s, medical pro’s and agency pro’s soul as is neglecting that part of your life.

Tracey’s Conference Diary Entry #2

December 12, 2011

By March 21, the day of the conference, I would like to  bound gracefully  up on that stage and address all the attendees in a perfectly strong clear voice issuing from my strong, graceful, slender form.  I would like to wear a certain ensemble in a much smaller size than the one I put on now.  I would like to be able to play concert-quality piano, write beautifully and fast…  if others can do it, why not me?  Because I am not them.  I think a more realistic and achievable goal, considering my brain and my body, would be to ignore what everyone else is doing (to some degree) is and be the best I can be at that point.  I am also figuring out that there are certain negatives that make me feel like I shouldn’t bother trying- even if other evidence tells me I am succeeding.  Read on in the actual diary and you’ll see what I mean.

I am learning how many options I have; how many ways there are to look at – and solve – a problem.  In my case, the journey might be as much a growth and development experience as is reaching the destination. So here is what  I have done (and am doing) to go “Beyond Rehabilitation” – to embrace life outside of the limitations I put on myself, and to address those  BI-erected obstacles in the most enriching, positive way possible

-I am paying attention to, even writing down, everything that affects my thought processes: anything people do or say that will tell me about myself and how I can approach life in a better way.

-I am asking for opinions and advice: listening to people – perhaps not following advice given; but considering what they tell me and why

-noting my own feelings and reactions: analyzing why I act and emote the way I do

-Explaining why I do things (when necessary) instead of making a joke of something or putting it in ‘terms the average Joe can understand.” (that last one is a time-saving device: besides one to avoid boringly detailed explanation of issues the listener cannot understand)

-not explaining anything to people who have no right or reason to know about my personal life.

-I am concentrating on what is missing from my life experience that I can somehow reinstate.

On October 8th, I flew to Glasgow, Scotland on my way to the Scottish islands called the Outer Hebrides.  I was alone; I love to travel alone.  I began these solo journeys about seven years ago as a dare to myself – to overcome the fear of not being able to survive on my own in a strange landscape.  On my first trip to the Hebrides, I made sure to meticulously plan every minute of my journey.  I was a lot more confident than I would have been had I not done this: unknown territory is scary. All the same: anxiety ruld my life for two months before I left.  When I got on that airplane, though,  it disappeared. The next year, I went to the same place but got stuck in one location (rather than traveling the entire island chain) due to bad weather.  This year I didn’t look up schedules in advance, nothing like that.  I knew where I wanted to go and besides exercising a lot, I didn’t do extensive vacation preparation.  That freedom allowed me to choose from a lot of option when I was there, rather than be limited to my established route, but it didn’t help me with one important thing.  Six weeks  of aggressive, rehabilitative-ish exercise is not enough to completely revitalize a person in really poor shape who has ataxia, to boot.  I couldn’t hike and scramble up mountains with my new friend Jon of Yorkshire, unless he basically dragged me along (which he did a couple times, bless him).  I couldn’t cycle from island to island with the fascinating Austrian photographer Peter.  I couldn’t do much with any of my new pals except gather with them in the hostels’ common areas in the evenings and trade stories about our day.  I wasn’t so sad about my brain trauma-induced inabilities: what I WAS upset about was limitations I’d accidentally placed on myself: TBI barriers I had ignored for years and even more, which had nothing to do with the injured parts of my brain.  The idea of my amplifying depression, poor physical health and loneliness  all of these obstacles  together cause was (and is) infuriating.

I think the real spark for this feeling occurred when I met our 2012 conference keynote speaker, Doug.  Doug cycled across the country, supporting brain injury survivors, education and so forth, Doug is a pr wizard, with presence all over the media, he’d run a marathon and was about to run another, he’s a Philadelphia engineering teacher, blah blah blah.  Yeah, it’s depressing, I know. Atl east – depressing because I just can’t imagine myself being that positive and confident. This stuff COULD make one feel about 2 inches tall – might as well eat worms.  You know what, though?  The thing that impresses me most about Doug is his incredibly upbeat view of EVERYTHING. He’s  just going to do what he’s planning to do, somehow or other, and that’s that.  And if people need to be negative, he just smiles and does his thing.  Where is the Insecurity?  The wavering confidence?  I know where – the rest of us TBI type have used up the entire store.  There’s just none left.  GRRRRRRR!!!!  But as grumpy and jealous as I am about his attitude, advocacy and energy, Doug is also making me realize that I can do so much more to make my life great…. and so I am.

Tracey’s “Beyond Rehabilitation” diary: Entry #1

December 12, 2011

When my co-chair Lisa Furber and I chose the theme of this year’s conference, even before it was so perfectly titled “Beyond Rehabilitation: Reclaim and Rejuvenate” by one of our incredibly “with it” committee members, I decided that one of my duties (not only as the co-chair but as the only person with brain injury on the committee) was to prove my belief in this message.  The idea of the conference , in simplest terms, is this – don’t turn the prison sentence of brain injury into a lifetime of solitary confinement (that’s a dramatic metaphor, but you know what I mean).   I made a vow to challenge myself; to make a list of every brain injury-related  problem, then to break  down all those things to figure out : what am I doing that makes these issues worseor at least to hinder their improvement potential?  And most importantly, how can I l take back the control brain injury is exerting over my life?   This  search will require me to be very honest with myself (not pleasant at all), to be honest with others (at times only mildly less painful), and even to ask them for advice on how to deal with challenges they may have never encountered (often just plain frustrating).  I had begun ‘improving’ at the beginning of September – before I made this vow – because I knew if I made an October- planned trip to some Scottish islands – a rural area boasting rustic accommodations –  in poor physical condition, unsteady, weak and carrying extra, disproportionate weight both in backpack form and fat form, I would greatly lessen the vacation’s enjoyment potential…not to mention my chances of coming out without bruises, sprains or breakage.  It was just common sense for me to know that my excess poundage and muscle wimpiness were exaggerating the effects of my brain’s unwillingness to let me balance properly or move the right parts at the same time.  When the conference idea began to take on solid form, however; I knew I would need to pay serious attention to this and other problems – and see just how much I, with the assistance of other people and resources (research, activities I normally avoid, etc.) could do to go Beyond Rehabilitation.  So I began to give real thought to what goals I wanted to reach and what it would take to achieve them.  The more I thought, the more these few goals became a giant pyramid of several desires; the “what it would take” was not nearly as simple as it originally seemed, either.   All the new distractions were getting in the way of the important things.  More importantly, all the pressure I was heaping on myself made the task of being   the ‘ME’ I want to look impossible. Well – there’s an obstacle I’m inventing I thought.  The path became a lot more passable when I realized that I needed to stop throwing extra boulders in it.   It all comes down to this: it takes a lot of hard work, a lot of creative thinking, even more patience, and most of all: belief in your own capabilities to be the person with whom you are happy.  Why is it so important to have faith in yourself?  Because this journey is one of frustrations upon tears upon fears and who knows if or when I’ll get to where you thought you want to be.  All I know is: you won’t get anywhere if you don’t try; and I am very curious to see just how far I can get.

Beyond Rehabilitation Information

December 12, 2011

Beyond Rehabilitation Information