My Brain AVM Story – “Get Up”

This is another essay from my book, “Run, Run Because You Can”.  You can read the first essay from the book that I posted in this blog at: http://www.girlwiththecane.com/brain-avm-story-20/

Get Up

On my first day on Penetanguishene General brain AVMHospital’s rehabilitation floor, I woke up thinking, “I can’t do this.  I don’t want to do this.”

Decide whether or not to get up after we’ve been knocked down is like standing at the foot of a mountain and deciding whether or not we’ve got the stuff in us to climb it.  Mountains are huge and craggy. They often rise through inclement weather.  Often, what’s at the top isn’t even visible from the ground.  Your safety isn’t guaranteed when you climb a mountain.

So why do it?

Because we must.  Because the human spirit hates to be grounded when it can climb.  Because we’re meant to go without fear and strike a trail that we can be proud of, right to the top of our mountains.

An elderly gentleman on my floor at Toronto Western was famous among staff and patients for repeatedly trying to escape from the hospital.  He could not understand that he was too frail after his surgery to be even walking on his own, let alone living in his own home.  He promised he would sit quietly in the wheelchair if they would let him get out of bed, but the nurses soon learned that he would hop up and make a beeline for the elevator as soon as he thought no one was watching.

He almost made it off the floor one night. One of my visitors mentioned to one of my nurses that he’d just seen an elderly man in a hospital gown heading for the elevator…did she want to know about that?

She dropped everything and ran from the room.

Never Give Up

I never met this fellow.  I never even saw him. I did, however, hearing from my family about his escapades, and the stories delighted me.  I do love people who go after what they want, and this man seemed to concoct a new escape plan every day.  He became so hard to keep seated the wheelchair that the nurses were forced to belt him in it, for his own safety.  He’d sit by the nurse’s station, as he claimed it was too lonely in his his private room, for which he paid.  He would plead with my sister each time she walked past his wheelchair, “YOU will let me out, let me out!”.  Dad once caught him trying to saw through the belt restraint with a plastic butter knife.

Faith, Hope, or a Bit of Both

Deciding to get up and try again needs that passion and conviction.  It’s a decision made in the soul.  When it’s made, heaven itself shifts, though we don’t always see the action that we want here on the ground.   “Whew, that was easy!” you might say when it’s done.  “This is what I have decided.”  That’s how these decisions are.

When there’s no choice but to hope that getting up is going to be worth it, everything becomes very clear and very easy.  It’s making that decision again, everyday, over and over, until you breathe it, that’s difficult.  Because you won’t make it once, twice, ten times…you’ll have to do it as many times as necessary, believing that it is going to pay off.  You can call that faith, or hope…personally, I think it’s a bit of both.

Whatever you call it, as long as you hang onto it, in whatever way that you can, you’ll be okay.  I believe that.

To Brighter Tomorrows

That first day, after I asked myself if what I did want was to be flat on the back for the rest of my life, powerless to look after even my most basic needs, totally forfeiting control of my body and my life, I decided I had no choice to but to get up.  And, as hard as it’s been sometimes to trust that whatever is at the top of my mountain is worth the climb, I’ll never regret taking that first step.

I am glad that I can still have faith enough to keep trying, and that I can dare to hope for brighter tomorrows.

Comments are closed

Transition Planning – Wishes and Dreams

This is the second post in a series on assisting young adults with transition planning as they leave high school and enter the adult world.  You can read the first here: http://www.girlwiththecane.com/transition-planning-1/

Community Living Kawartha Lakes developed a transition planning manual several years ago called “Building My Bridges from School to Adult Life – A Transition Planning Manual for My Future”transition planning which includes a page called “Wishes and Dreams”. The idea of people having wishes and dreams sometimes helps students to better understand transition planning.

Everyone has Wishes and Dreams

Many young people with intellectual disabilities haven’t thought about the fact that they could do anything in life other than what they’re directed to do. In fact, they may have been explicitly told that they shouldn’t try something because they won’t be able to do it, or told some activities simply aren’t options for them. It takes a while for some of them to really consider what they’d like to do in life and to start talking about it.

The people that have told them that they shouldn’t try something or out-and-out forbidden it have sometimes done it with the best of intentions. They’ve not wanted to set the young person up for failure, or put them in a position where they could potentially experience disappointment or rejection. Sometimes they have concerns about the student’s safety or well-being, and sometimes those concerns are legitimate. And everyone should be so lucky, to have people who are concerned about their physical and emotional well-being.

But everyone has the right to wishes and dreams, including people with intellectual disabilities. Transition planning is identifying those wishes and dreams, evaluating what’s needed to make them come true, and coming up with a plan to do so.

Transition Planning in Action

A couple of examples…

  1. A student may want to go on to post-secondary education. Transition planning will include working with the school to sure that the student has all the courses that he or she needs to apply. In Canada, going to community college or doing an apprenticeship is an ambitious (but not impossible) goal for a student with an intellectual disability, and may take some time to achieve. There may be significant setbacks and disappoints along the way. But students need to learn to deal with setbacks and disappoints, too, just as everyone else does. Just because dreams are ambitious and may cause a student disappointment are no reason not to include them in a transition plan.
  2. A student may want to live independently. Many students with intellectual disabilities require skill-building and safety training, and sometimes some support services, to ensure that they will be safe in an independent living setting. Transition planning will include working with the school to see what independent living skills the student can learn there, assisting the family to apply for funding for a life skills worker, educating the family on how they can teach life skills at home, and assisting the student and to apply for supported independent living housing arrangements. Transition plan goals should take into account that the individual can learn new skills before reaching the goal.
  3. A student may have a goal that may be unlikely to reach for anybody.  Not many people are going to be professional ballet dancers, for example. But no one told me when I was ten that I couldn’t take ballet, dream about ballet, and learn about what I needed to do to become one. I was eventually disappointed when I learned that I couldn’t be, yes. But I found ways to continue to keep ballet in my life. Transition planning for the student who wants to be a Hollywood director will include researching ways to indulge his love of film in the community, perhaps through a job at a movie theatre or video store and expanding his social network to find friends to go to the movies with. Transition planning should be creative.

Wishes and Dreams of Friends and Family

Good transition planning is person-centred. People who are important to the student, such as family, friends, teachers and support people should be encouraged to talk about their wishes and dreams for the student’s adult life. Ultimately, however, it’s the student’s life goals that should guide planning. As a transition planner, my first responsibility was to the student.

More about transition planning from the National Dissemination Center for Children with Disabilities (American resource):

http://nichcy.org/schoolage/transitionadult

Comments are closed

Changing the World One Step at a Time

So, recently I’ve been watching a 2005 PBS documentary series from Netflix-on Demand about thechanging the world Holocaust. It’s called  “Auschwitz: Inside the Nazi State”.

Because I’m Really Into Fun Television

As you might expect, a documentary series about the history of Auschwitz isn’t exactly…uplifting. I’m not even sure what prompted me to start watching the series in the first place, as Holocaust informational material really disturbs my “no evil people, just evil acts” philosophy of life and ultimately distresses me. My sister visited Auschwitz on her tour of Europe and didn’t really want to talk about it when she returned. I don’t know if I could go there. I think the energy of the place would be too much for me.

I can’t get my head or my heart around the Holocaust.  I can’t even begin to fathom the horrors that people lived through, and what made their captors hate so much that they could put others through those horrors. I listen to the survivor interviews, and think, “How do you cope with carrying all that?”

And the thought, “I’m ashamed to be human,” has passed through my mind.

Don’t Want to be the Same Species As Such Horrible People

It’s  not the first time I’ve pondered those things. I’ve thought them in response to hearing about hate killings of people because of their sexuality, such as Matthew Shepard. I’ve thought them hearing about acts of racism that people have faced over the years. I’ve even thought them in work, hearing about abuses that people with disabilities have had to endure from caregivers and supports (both paid and non-paid).

I’d like to believe that people aren’t evil. But some days it’s hard. And in my work, some days it feels like we’re a very, very long way from a society where people with disabilities are respected and regarded as equals.

Some days it gets easy to ask myself, “What’s the point? We’ll never get there…”

Another Perspective

I finished the fifth documentary yesterday, and one of the comments from the panel discussion is what has brought me here. Jerry Fowler, who worked for the United States Holocaust Memorial Museum in Washington D.C. when the documentaries aired, said that from the Museum you can see the Jefferson Memorial. The Declaration of Independence is written on the walls of that memorial:  “All men are created equal”. Yet at the time the Declaration of Independence was written, Fowler observes, men owned slaves, and would for another century. For another century after that, there was legalized discrimination.

But “All men created equal” was a beautiful sentiment, even it wasn’t true when it was written, and it was definitely worth working toward…and still working toward today.  It would have been very easy at any given point in those next 200 years of legalized racism, “What does this mean for us, when it’s so obviously not true?”  However, it’s an idea that belongs in a space where everyone can see it and work toward it…even if getting there takes a long, long time.

(These are a paraphrase of Fowler’s words…Netflix won’t let me rewind this one and I actually had to let the documentary play through again to get to the interview a second time).

Changing the World

He was responding in general to a question about why we still seem reluctant to help countries that are struggling with genocide, even after all the lessons the West learned from its slow response to the Holocaust. I was encouraged by his idea that we need to be heartened by even the slow progress that humanity makes toward the ideal. I like the idea that the ideal *is* working toward, no matter how far away it seems.

On my bad days, when I ask myself why I and other disability advocates bother, I’ll try to remember his words and think of just one step that I can take that day to get us a bit closer to the world I’d like to see…even if it’s just a note to another disability advocate to say how much I appreciate their work…

Maybe that’s the real key to changing the world. One little step at a time.

 

Comments are closed

My Brain AVM Story: I Worry

I worry about a lot of people in my life.grateful

I worry about my dad. His health is fairly good right now, but he lives on his own, and I worry about him getting lonely, or falling and hurting himself.

I worry about my sister and my brother-in-law and if they’re doing okay as new parents. I worry about whether they have everything they need, and if they’re adjusting okay to what I’m sure what must be a lot of new challenges (they appear to be doing very well, but I’m sure that with a new baby, a dog, and a cat, they have their “moments”.) I changed my first diaper by myself over the week-end. Although it was less difficult with one hand than I thought it would be (fortunately for me, my niece loves being on the change table and didn’t see to mind me tugging the clean diaper around underneath her to get it properly placed) I have no idea how especially single parents deal with everything involved in taking care of a baby.

I worry about friends that I know have a lot going on in their in their lives. Some live close, some live very far away. Most of the time there’s not a lot I can do for either group of friends but be a listening ear (which makes me feel very helpless, and I’ve never liked feeling that way…it frustrates me).

After living on my own for so long, I’ve learned to deal with most of my health stuff by myself – my seizures (when I was having them), my migraines, my rare dizzy spells from Dilantin toxicity, the very rare time when I get sick and throw up. Lately, for some reason (I’m thinking a combination of chronic stress and perhaps a recent medication change), I’ve not been feeling as well as I’d like. And I’ve realized that it’s difficult to admit to people that I don’t feel well. I’ve  had so much invested in so long in being “okay”, so that people don’t associate any “not okay” with my disability and treat me differently, that I have literally forgotten how alarming it can sound to people when I say, “I had a little double vision today, so I took a nap,” or “I was dizzy today, so I took a day off from writing,”

I don’t like it when people worry about me. But sometimes, just like everyone else, I need a little TLC when I’m not feeling well. I’m learning that it’s okay to ask people for that. I’m learning that it’s okay to call my Dad and ask him to bring me some ginger ale when I’m not feeling well, just the way that I would gladly do for him if our situations were reversed.  Because he worries when I’m sick, and he wants to help.

I think what brought this all up was that when I went to see my sister and her family this weekend, she’d bought me a bag of groceries. There had been a major sale on at the grocery store at which she shops, apparently, and she’d filled a bag for me of things that she not only knew that I use every day (peanut butter, Lysol wipes for when the cats jump on the counters and tables) but also stuff that she knows I like but don’t buy right now because they’re just too expensive: Nutrigrain bars, my favourite crackers, cookies that I like, SnackPaks…

And it made me almost cry, because it made me realize that my sister worries too, and wants to help how she can.

And there was a message on the answering machine that night from a friend that I know worries, and called to find out if I was okay if I was okay after my day.

I worry about a lot of people. A lot of people worry about me, because they care. And I’m very grateful for all of them.

 

Comments are closed

International Day of Persons with Disabilities

International Day of Persons With Disabilities

international day of persons with disabilities

December 3  is the International Day of Persons with Disabilities. It’s a day to celebrate the contributions of people with disabilities and to raise awareness about their rights.

I knew that I wanted to blog about this in some way today, and I spent a lot of time thinking about it last night, and kept coming back to what Michael Bloomberg saying that having making all the cabs in New York accessible wasn’t necessarily what people with disabilities wanted.

What Do People With Disabilities Want?

I’m not a scholar in the field, but I’ve worked with people with disabilities for over fifteen years, and I’ve been living with my own disabilities for over a decade. I think that our needs are fairly simple.

  1. Access to Buildings When we’re cut off from buildings and from areas in buildings, we’re cut off from experiences and from participating fully in the community. We don’t have choices and opportunities that everyone else has.
  2. Access to Resources The current struggles to make web pages more accessible, to make menus easier to read, to make the justice system more navigable, etcetera, seem like overkill to some people without disabilities. But when you can’t see a computer webpage because you’re red-green colour-blind, or you can’t read a menu because the print is too small, or you can’t don’t understand what your public defender is saying to you because you’ve got an intellectual disability, you’re at a distinct disadvantage because of your disability.
  3. Respect for Rights and and Knowledge of Responsibilities  People with disabilities need to live in communities where, like everyone else, they have rights and responsibilities. People with disabilities, adults and children, are at a much greater risk for bullying or assault, sometimes by people are supposed to be taking care of them (paid and unpaid). Abuse can come in all forms (verbal, sexual, financial, violation of privacy, theft). Other rights that get disrespected are as follows: the right for a person to make their own decisions about their life, to be in relationships, to try new things, and to make health and/or money decisions. People with disabilities deserve to have rights abuse allegations take seriously, and need to understand that they have the responsibility to behave in ways that respect others’ rights. Failure to do so will result in consequences for them, just as it would for people without disabilities.
  4. Opportunities to be a Part of the Community  Everyone has ways that they can contribute. Community members need to be open to having all sorts of people as volunteers and employees in the community and makes everyone feel welcome at community events.
  5. People-Centred Supports for Assistance When Necessary  Not everyone needs help all the time, but sometimes something comes up with which people need assistance. It’s always nice to know that someone will be there if you need, whether it’s a paid or non-paid support.
  6. Income Support for Those that Can’t Work That Actually Reflects the Current Cost of Living  The amount that individuals receive on the Ontario Disability Support Program  leaves them at a poverty level.

The Challenges

Right now, setting up frameworks within communities where we can ensure that these five things are adequately addressed costs is taking a lot more time than it should. I believe it’s at least partly because educating governments about the importance of getting funding to help address these issues is taking a long time. It’s simply not high-priority.

And I think that’s partly because you can’t appreciate how vital these issues are until you’ve lived them.  I know from experience that it’s difficult to realize how frustrating it is not to be able to get into a favourite restaurant in a wheelchair until you’re in that position.

I didn’t know until a couple of days ago that International Day of Persons with Disabilities existed, and I hope it will bring some much-needed awareness to what still needs to be done.

On the lighter side, here are some people with disabilities whose accomplishments we really need to celebrate on the International Day of Persons with Disabilities:

  1. Rick Hansen
  2. Christopher Reeve
  3. Albert Einstein
  4. Terry Fox
  5. Stephen Hawking
  6. Michael J. Fox
  7. Helen Keller
  8. Ludwig Van Beethoven
  9. Thomas Edison
  10. Charles Darwin

More about the International Day of Persons with Disabilities:

http://www.un.org/disabilities/default.asp?id=1561

Comments are closed

Filing taxes for social service eligibility = more people falling through the cracks?

I was talking with a social services provider today about current eligibility standards for variousfiling taxes Ontario social services programs. I mentioned new eligibility criteria that I’d come across for a particular service, and she said that she’d heard rumours that it may become part of eligibility criteria for the sector in which she works: filing taxes.

Makes sense, right? Taxes pay for social services…shouldn’t people who use social services pay taxes and contribute to the funding of these services?

Ideally, yes. But the idea of making social service eligibility contingent on filing taxes troubles me.

Just Because People Aren’t Filing Taxes Doesn’t Necessarily Mean that They Are Trying to “Get Something For Nothing”

I know that there are people are out there who are avoiding filing taxes. I know that people have a number of reasons for doing so. I’m concerned that if receiving social services becomes contingent on filing taxes, people with disabilities who may not understand the importance of filing their taxes each year, such as someone with an intellectual disability or someone with a mental disorder, may be ineligible for services that they need. Not everyone with these disabilities has supportive family or friends to assist them with filing taxes, and government cutbacks to agency supports means that sometimes people may not have a support worker to assist them either.

A Step in the Wrong Direction

Social services eligibility criteria requiring someone to file taxes penalizes people who already may be very vulnerable, and potentially removes the opportunity to receive support from people who may be very badly in need of it already.

It’s not a good way to go. Hearing that at least one Ontario service that I know have has gone this way and that another may go the same way made me feel sad and disappointed. We can do better for the vulnerable people in our society.

Comments are closed

Torn About Rick Santorum

I’ve watched almost all the Republican Presidential Debates this time around, and I’ve

Rick Santorum come away from all of them with a couple of consistent impressions. One of the strongest ones has been: I don’t like Rick Santorum.

I don’t like his stance on homosexuality and gay and lesbian civil rights. I don’t like his stance on abortion. I don’t like how he intends to balance the books in the US.

And I especially didn’t like the video to which I’ve linked below.

Rick Santorum and People with Intellectual Disabilities

It seems inappropriate to me that he use Bella, his daughter with Trisomy-18 (which is like Down’s Syndrome, but more severe), to generate warm-fuzzy “vote-for-me” feelings, granted that some of the services that he’s pledged to cut will be services that will affect her ability to get a good education, good health care, and enjoy a stable future.

Rick Santorum talking about Bella

(For an excellent break-down of why this video is offensive, see the following link: http://badcripple.blogspot.com/2011/11/republicans-emotional-use-of-disability_16.html  He explains it much better than I do)

However, at a symposium on November 21, Rick Santorum told a deeply personal story about how for the first couple of months of Bella’s life, he actually withheld love from her, figuring that doing so would make it easier to take when he lost her (as all the doctors told him was inevitably going to happen). The story of Bella’s birth and first few months is too reminiscent of what many parents of children with Down’s Syndrome say that they go through right after their babies are born. (I wrote about this at http://www.girlwiththecane.com/downs-syndrome/ ) ‎ Santorum and his wife were told that Bella would soon die, were encouraged to “let go”, and had to fight to get a prescription for oxygen for her when they took her home from the hospital. The doctors apparently didn’t feel that her life was worth fighting for. However, the little girl that doctors said wouldn’t live a week is now three years old, and Santorum is obviously committed to making sure that these children that doctors want to give up on get a chance.

Rick Santorum talks about all this in this video, taken at the November 21 symposium:

http://articles.businessinsider.com/2011-11-21/politics/30424400_1_gop-candidates-confession-rick-santorum

Rick Santorum, You Were Doing So Well…

You’ll notice that the title on that page is “Watch this Rick Santorum Video and Not Cry”. I couldn’t. Until I heard him talk about how in societies where there’s socialized medicine, children like Bella die. This is simply not true. Nations with universal health care do not single out children with disabilities as targets for death. There does seem to be a perception among the medical community that some children are too “disabled” to bother giving intensive life-saving treatments, but, news flash – that happened within Santorum’s own family, within the good ol’ USA, with its decidedly non-socialized health care.

Then I was just annoyed again.

And so, I’m still torn about Rick Santorum.  However…

Politicians Are People Too

I found George Bush’s Press Secretary, Tony Snow, appallingly annoying. I couldn’t even really say why. I think I wondered how he could sleep at night, doing the job that he was doing. I had zero respect for him.

After he died of cancer, I saw a couple of documentaries on him. I saw that he was actually a pretty stand-up guy. He was devoted to his family, he’d hosted FOX News Sunday (one of the only FOX News shows that I find even remotely balanced), and it seemed like he’d actually done a lot of good in his career.

Since then, I’ve tried hard to keep reminding myself that politics just isn’t an arena where the likable parts of people often get to shine.  I know from watching the bit of the November 21 Rick Santorum video that made me cry that we probably share some core beliefs and values about people with intellectual disabilities that could probably keep us talking for a while.

Would Rick Santorum and I be lifelong friends? Would I vote for him if I was able to? Probably not.  But he’s a person too.

And isn’t this all about looking more at our commonalities than our differences?

I would just hope that he would show me the same respect…

Comments are closed

Fun stuff: NaNoWriMo and Me

Yay NaNoWriMo November!

nanowrimo

Everything I need for NaNoWriMo!

On December 1, National Novel Writing Month, or NaNoWriMo, will end for another year.

NaNoWriMo started in the San Francisco Bay Area, but it’s become international. The challenge is to write a 50 000 word novel in one month. I don’t remember what year I started to attempt to do this. I had it in my head that I started when I was university. Looking at the history of NaNoWriMo and how it developed, I can see now that I must have started later…definitely post-stroke.

Why, in God’s Name…

I like to write. I started writing fiction when I was eight years old. I don’t write nearly enough of it. I know that’s partially because I tend to edit as I write, and that bogs me down very quickly when I’m writing fiction. But when you have to write 1667 words a day just to ensure that you’ll reach 50 000 words by the end of November, there’s no time to edit as you write. Some people work from outlines, but I just write and see where the story takes me. Usually it’s far from where I thought I’d go with it. And that’s a lot of fun. It’s a pressure-filled month, but it’s a fun month.

And yet I’d never hit 50 000 words. I was always getting a little closer every year…but life just always kept me from getting to the 50 000 word mark and getting that official “NaNoWriMo Winner” badge for my website.

I’ll have it this year, as I got to 50 000 words last night. Finished with a couple of days to spare. At last.

What Does This Have to Do With Disabilities?

Nothing, really. Except that I think that it’s really, really important, for people that acquire physical disabilities, to look for ways to keep doing the things that they love to do.

I love to write. Lucky for me, that doesn’t require any adaptations. I can use my computer. Hand-writing was difficult for a while. When I have to write quickly (like take notes in a meeting), I don’t cross ‘t’s or dot ‘i’s, because I’m still a little slower than everyone. But I type fairly quickly. Even if I didn’t, there’s excellent voice recognition software on the market. There’s no reason for me not to write if that’s what I want to do.

I also love to dance. I had to work myself up to signing up for ballet class, that’s for sure. But I saw quickly that it was really a matter of expectations. If I’d gone in expecting to be able to dance like I used to, I would have been disappointed. That simply wasn’t going to happen. That was a little difficult to accept, yes. But it also felt really good just to be dancing again, in the capacity that I could manage. When I could keep my focus on that – wow, those Saturday mornings at the ballet barre were fun.

It doesn’t have to be perfect. It just has to be fun. When I can silence my inner critic and just go with the flow, in life and in writing…I never know where I’ll end up.

(P.S. Thanks to everybody who cheered me on in my NaNoWriMo writing this year! I couldn’t have done it without you!)

More about NaNoWriMo: http://www.nanowrimo.org/

Comments are closed

My Brain AVM Story: “Snowy Day”

Winter is here in Ontario.brain avm story

We haven’t had any snow that’s stuck yet, but the temperature has definitely dropped – we’ve had freezing rain, and the snow won’t be far behind.

I don’t mind the cold so much, but snow annoys me. I’m much better at getting around in it now than I used to be, but it still creates too many obstacles that I just don’t need.

I wrote this short personal essay about winter in 2006, when I was considerably less mobile. It appeared in a book of personal essays that I wrote called “Run, Run Because You Can”. The book is out of print now, but I’m considering bringing it back in E-book form when I get the time to put it together.

Anyway…I hope you enjoy the essay.

Snowy Day

            Today the world is white.  Overnight, the temperature dropped to below -20 degrees Celsius, and we received five centimetres of snow.  The snow will continue to fall all day, the local weatherman assures me, and likely into the afternoon tomorrow. It is winter in Ontario.

I generally volunteer on Wednesday mornings, but today I will not risk walking into town and falling.  They don’t need me badly enough to justify a cab ride.  I could call my father, but I’m sick of bothering him at work for rides.  I call and tell them I will not be in.

Through my window, I watch the white world.  Today, stuck in my apartment, I feel stuck in my life.

“Your problem,” my father told me early on in all of this (and it does seem  oh-so-long ago today) “is that you’ve watched all those medical dramas on television, and you expect for all of this to be resolved in fifty-six minutes…it doesn’t work that way, love.”

Not in fifty-six minutes, I tell the snow, or fifty-six days, or fifty-six weeks, or even fifty-six months.  Soon it will be five years, sixty months, since the stroke.

I want to be fully recovered today.  Right now.

Successful people in our society move.  They are people that “go places”, that are “on the move”, “movin’ on up”, that “rise above the rest”.  They live “on the run”, and “on the go”.  They don’t stand and look at the world through snowy windows, they go out in it and make things happen.

“Stuck” is a knot in my throat and a brick in my stomach.  I will not be going to town.  I will not be going anywhere.  I can’t stop snow or melt ice, and I can’t make my brain realize that I have a perfectly useful left hand.

The thing about being stuck is that I totally put myself there.  You can’t feel stuck unless you’ve convinced yourself that there’s a better, “unstuck” state for you to be living in.

I think about what I would do if I went into town today

On days like this, days where I come up against a wall of “stuck”, I have to remind myself (as gently as possible, for this is the only way in which we should remind ourselves of vitally important things) that “success” in my life will flow from me just doing my best to be me.  Me, with a weak side and faulty wiring in my head!

Comments are closed

Michael J. Fox is Awesome

I saw an amazing interview on Wednesday morning with Michael J. Fox.

Michael J. Fox

Disruptive Philanthropy

Michael J. Fox is Awesome

Michael J. Fox will always hold a special place in my heart because:

1) I love the “Back to the Future” Trilogy

2) He’s Canadian

3) For a person living with a debilitating nerve disease (Parkinson’s), he’s got the best attitude of just about anyone I can think of. It doesn’t seem like anything gets him down (although I’m sure, like all of us, he has his days).

The interview I saw focused mainly on the role that the Michael J. Fox Foundation plays in finding a cure for Parkinson’s disease. Fox sees himself as a “disruptive philanthropist” – he gives money to researchers, but he requires them to report yearly about their progress. This model of funding is apparently quite different from most, and Fox does it because it forces researchers to keep in mind that there are people at the end of the line waiting for the results of this research.

“Patient-Centred” Research

He used the word “patient-centred” in the interview, and I actually laughed out loud. Patient-centred! What an idea!  What a revolutionary concept, to design anything that is supposed to help people – supports, planning processes, research – *around* the people that these things are supposed to help!

Designing anything according to person-centred philosophy is more work. It requires more listening, more patience, and often more creativity to assist people to meet their goals. It can be sometimes be infinitely frustrating. But it’s also infinitely important. It’s a way of showing people respect and of saying to them that their goals and dreams are worthy of being taken seriously. It’s easy to let person-centred methodologies fall by the wayside as staffing levels get cut…but it’s because staffing levels are getting cut that person-centred planning, and creative, community-based ways of  assisting people with disabilities to meet their goals becomes even more important.

But back to Michael J. Fox.

He’s Just Awesome

I’m more and more impressed by this man every time I see him interviewed. Anyone living with any sort of illness or disability can take a lesson from him about taking what life gives you and just…running with it. And about how sometimes being disruptive isn’t always a bad thing. :)

Check out the interview here, including footage of Michael J. Fox’s recent performance of “Johnny B. Goode”:

http://www.ctv.ca/CTVNews/CanadaAM/20111122/michael-j-fox-parkinsons-interview-111122/

Comments are closed

Stop Copying Plugin made by VLC Media Player