Re: Re: SMA family on the news

[Guest guest]

This is an absolutely beautiful quote, Alana. You conveyed my feelings

completely.

On Nov 21, 2008, at 11:34 PM, Alana wrote:

> ng depressed. ly,

> I'm happy and realistic. This has made me a better teacher; a better

> advocate; a responsible employer; and a more honest, lover, daughter,

> sister, and friend. I have sucky days, but probably less than most;

> and every day this disability is hard. It is what it is.

[Guest guest]

Alana,

Thank you for your thoughtful response.  I, too, am happy and realistic.  One

day at a time seems to work best for me.

Happy Weekend to you and all!

Lori

________________________________

From: Alana <alrt@...>

Sent: Friday, November 21, 2008 10:34:00 PM

Subject: Re: SMA family on the news

Lori's post doesn't seem to me to be coming from a place of

depression. In fact, for me, your post Lori, was refreshingly honest.

I found a lot more strength and comfort in my life when I let go of the

defensive posture, " I'm just like everybody else. " You are correct;

when I meet new people, even in the progressive People's Republic of

Berkeley, I am braced for any number of reactions to me, most of which

are affected by my appearance - 55 lbs. of spindly limbs, a squeaky

voice, ventilator whirring, words slightly slurring, and an unexpected

ability to speak articulately. We, like most people with significant

disabilities, have a unique cultural perspective. It's naive to deny

that navigating a world made for " normal " folk is not harder when

having such a disability. Equating the acknowledgment that it's harder

with being depressed is not necessarily logical. Many of us recognize

the difficulties that we endure without becoming depressed. ly,

I'm happy and realistic. This has made me a better teacher; a better

advocate; a responsible employer; and a more honest, lover, daughter,

sister, and friend. I have sucky days, but probably less than most;

and every day this disability is hard. It is what it is.

Alana

>

> Wow! It seems like your really depressed! Life is harder for us,

but in

> general, I'm happier than anybody else I know, besides my wife!

>

>

>

[Guest guest]

My name is Hogan. I am 43 years old and have SMA Type 2.  On April 24,

2008 I married the love of my life, Ruth Glendinning, who has always seen me as

far above merely " normal " and is extremely clear-eyed about who I am.  Yes, she

knows there are limits, but encourages, supports and expects me to push past

them when I can.  I have never let her down and I do the same for her.  We are a

team and in some ways, she is my arms and legs in the world.

 

I want to be very clear about this, I am in no way " normal " .  I have a better

grasp of what is necessary to make me happy and fulfilled in life than most

people.  A close friend told me that someone who is presented to you as " normal "

becomes less so the better you get to know them.  I like to surround myself with

people from various backgrounds who are intelligent, creative and have a big

heart.  And, from what my friends tell me, that's what they see in me. 

 

My health issues have curtailed my adventures in the world this year.  But,

happily, the world seems to be quite interested in coming to me.  Some of my

story can be seen at The Lucky Mutant and we are keeping a blog of our

healthcare journey at Sober at the Party.  I was just interviewed for the

University of Texas publication " Longhorn Living " and another friend has decided

that it's time for my story to go to a broader audience so we will begin

planning & writing a book next month.  I'm telling you this not to just toot my

own horn, but because the physical differences I was born with not only shaped

my body, but have shaped my story. 

 

Thanks for your posts Lori and Alana, they were well written and truly spoke to

me.  Please feel free to contact me with any thoughts or comments.

" May I become at all times, both now and forever

A protector for those without protection

A guide for those who have lost their way

A ship for those with oceans to cross

A bridge for those with rivers to cross

A sanctuary for those in danger

A lamp for those without light

A place of refuge for those who lack shelter

And a servant to all in need. "

The Dalai Lama, Insight from the Dalai Lama

Messenger: kh78748

Skype: kh78748

From: Alana <alrt@...>

Subject: Re: SMA family on the news

Date: Friday, November 21, 2008, 10:34 PM

Lori's post doesn't seem to me to be coming from a place of

depression. In fact, for me, your post Lori, was refreshingly honest.

I found a lot more strength and comfort in my life when I let go of the

defensive posture, " I'm just like everybody else. " You are correct;

when I meet new people, even in the progressive People's Republic of

Berkeley, I am braced for any number of reactions to me, most of which

are affected by my appearance - 55 lbs. of spindly limbs, a squeaky

voice, ventilator whirring, words slightly slurring, and an unexpected

ability to speak articulately. We, like most people with significant

disabilities, have a unique cultural perspective. It's naive to deny

that navigating a world made for " normal " folk is not harder when

having such a disability. Equating the acknowledgment that it's harder

with being depressed is not necessarily logical. Many of us recognize

the difficulties that we endure without becoming depressed. ly,

I'm happy and realistic. This has made me a better teacher; a better

advocate; a responsible employer; and a more honest, lover, daughter,

sister, and friend. I have sucky days, but probably less than most;

and every day this disability is hard. It is what it is.

Alana

>

> Wow! It seems like your really depressed! Life is harder for us,

but in

> general, I'm happier than anybody else I know, besides my wife!

>

>

>

[Guest guest]

Great post ! I'm not normal either! Congratulations on your marriage!

Kemp

Director, OurGV Rewards

<http://www.ourgvrewards.com/> http://www.ourgvrewards.com

Phone: 714-974-5799

Business Phone: 714-974-5693

Cell Phone: 714-244-5920

Phone: 949-579-9465

Email 1: d-kemp@...

Email 2: dkemp@...

<http://www.ourgvmall.com/djk> banner021.jpg

<http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500>

000-toolbar-banner-1

From: [mailto: ] On

Behalf Of Hogan

Sent: Saturday, November 22, 2008 9:29 AM

Subject: Re: Re: SMA family on the news

My name is Hogan. I am 43 years old and have SMA Type 2. On April 24,

2008 I married the love of my life, Ruth Glendinning, who has always seen me

as far above merely " normal " and is extremely clear-eyed about who I am.

Yes, she knows there are limits, but encourages, supports and expects me to

push past them when I can. I have never let her down and I do the same for

her. We are a team and in some ways, she is my arms and legs in the world.

I want to be very clear about this, I am in no way " normal " . I have a

better grasp of what is necessary to make me happy and fulfilled in life

than most people. A close friend told me that someone who is presented to

you as " normal " becomes less so the better you get to know them. I like to

surround myself with people from various backgrounds who are intelligent,

creative and have a big heart. And, from what my friends tell me, that's

what they see in me.

My health issues have curtailed my adventures in the world this year. But,

happily, the world seems to be quite interested in coming to me. Some of my

story can be seen at The Lucky Mutant and we are keeping a blog of our

healthcare journey at Sober at the Party. I was just interviewed for the

University of Texas publication " Longhorn Living " and another friend has

decided that it's time for my story to go to a broader audience so we will

begin planning & writing a book next month. I'm telling you this not to

just toot my own horn, but because the physical differences I was born with

not only shaped my body, but have shaped my story.

Thanks for your posts Lori and Alana, they were well written and truly spoke

to me. Please feel free to contact me with any thoughts or comments.

" May I become at all times, both now and forever

A protector for those without protection

A guide for those who have lost their way

A ship for those with oceans to cross

A bridge for those with rivers to cross

A sanctuary for those in danger

A lamp for those without light

A place of refuge for those who lack shelter

And a servant to all in need. "

The Dalai Lama, Insight from the Dalai Lama

Messenger: kh78748

Skype: kh78748

From: Alana <alrt@... <mailto:alrt%40comcast.net> >

Subject: Re: SMA family on the news

<mailto:%40>

Date: Friday, November 21, 2008, 10:34 PM

Lori's post doesn't seem to me to be coming from a place of

depression. In fact, for me, your post Lori, was refreshingly honest.

I found a lot more strength and comfort in my life when I let go of the

defensive posture, " I'm just like everybody else. " You are correct;

when I meet new people, even in the progressive People's Republic of

Berkeley, I am braced for any number of reactions to me, most of which

are affected by my appearance - 55 lbs. of spindly limbs, a squeaky

voice, ventilator whirring, words slightly slurring, and an unexpected

ability to speak articulately. We, like most people with significant

disabilities, have a unique cultural perspective. It's naive to deny

that navigating a world made for " normal " folk is not harder when

having such a disability. Equating the acknowledgment that it's harder

with being depressed is not necessarily logical. Many of us recognize

the difficulties that we endure without becoming depressed. ly,

I'm happy and realistic. This has made me a better teacher; a better

advocate; a responsible employer; and a more honest, lover, daughter,

sister, and friend. I have sucky days, but probably less than most;

and every day this disability is hard. It is what it is.

Alana

>

> Wow! It seems like your really depressed! Life is harder for us,

but in

> general, I'm happier than anybody else I know, besides my wife!

>

>

>

[Guest guest]

*

Normality is what cuts off your sixth finger and your tail*

linda

2008/11/22 <d-kemp@...>

> Great post ! I'm not normal either! Congratulations on your

> marriage!

>

>

> Kemp

>

> Director, OurGV Rewards

>

> <http://www.ourgvrewards.com/> http://www.ourgvrewards.com

>

> Phone: 714-974-5799

>

> Business Phone: 714-974-5693

>

> Cell Phone: 714-244-5920

>

> Phone: 949-579-9465

>

> Email 1: d-kemp@... <d-kemp%40sbcglobal.net>

>

> Email 2: dkemp@... <dkemp%40ourgvrewards.com>

>

> <http://www.ourgvmall.com/djk> banner021.jpg

>

> <http://www.benefitbar.com/benefitbar/subscribe/toolbar.php?toolbarId=1500

> >

> 000-toolbar-banner-1

>

> From: <%40> [mailto:

> <%40>] On

> Behalf Of Hogan

> Sent: Saturday, November 22, 2008 9:29 AM

> <%40>

> Subject: Re: Re: SMA family on the news

>

>

> My name is Hogan. I am 43 years old and have SMA Type 2. On April 24,

> 2008 I married the love of my life, Ruth Glendinning, who has always seen

> me

> as far above merely " normal " and is extremely clear-eyed about who I am.

> Yes, she knows there are limits, but encourages, supports and expects me to

> push past them when I can. I have never let her down and I do the same for

> her. We are a team and in some ways, she is my arms and legs in the world.

>

> I want to be very clear about this, I am in no way " normal " . I have a

> better grasp of what is necessary to make me happy and fulfilled in life

> than most people. A close friend told me that someone who is presented to

> you as " normal " becomes less so the better you get to know them. I like to

> surround myself with people from various backgrounds who are intelligent,

> creative and have a big heart. And, from what my friends tell me, that's

> what they see in me.

>

> My health issues have curtailed my adventures in the world this year. But,

> happily, the world seems to be quite interested in coming to me. Some of my

> story can be seen at The Lucky Mutant and we are keeping a blog of our

> healthcare journey at Sober at the Party. I was just interviewed for the

> University of Texas publication " Longhorn Living " and another friend has

> decided that it's time for my story to go to a broader audience so we will

> begin planning & writing a book next month. I'm telling you this not to

> just toot my own horn, but because the physical differences I was born with

> not only shaped my body, but have shaped my story.

>

> Thanks for your posts Lori and Alana, they were well written and truly

> spoke

> to me. Please feel free to contact me with any thoughts or comments.

>

>

>

> " May I become at all times, both now and forever

> A protector for those without protection

> A guide for those who have lost their way

> A ship for those with oceans to cross

> A bridge for those with rivers to cross

> A sanctuary for those in danger

> A lamp for those without light

> A place of refuge for those who lack shelter

> And a servant to all in need. "

>

> The Dalai Lama, Insight from the Dalai Lama

>

> Messenger: kh78748

> Skype: kh78748

>

>

>

> From: Alana <alrt@... <alrt%40comcast.net> <mailto:

> alrt%40comcast.net <alrt%2540comcast.net>> >

> Subject: Re: SMA family on the news

> <%40> <mailto:

> %40 <%2540>>

> Date: Friday, November 21, 2008, 10:34 PM

>

> Lori's post doesn't seem to me to be coming from a place of

> depression. In fact, for me, your post Lori, was refreshingly honest.

> I found a lot more strength and comfort in my life when I let go of the

> defensive posture, " I'm just like everybody else. " You are correct;

> when I meet new people, even in the progressive People's Republic of

> Berkeley, I am braced for any number of reactions to me, most of which

> are affected by my appearance - 55 lbs. of spindly limbs, a squeaky

> voice, ventilator whirring, words slightly slurring, and an unexpected

> ability to speak articulately. We, like most people with significant

> disabilities, have a unique cultural perspective. It's naive to deny

> that navigating a world made for " normal " folk is not harder when

> having such a disability. Equating the acknowledgment that it's harder

> with being depressed is not necessarily logical. Many of us recognize

> the difficulties that we endure without becoming depressed. ly,

> I'm happy and realistic. This has made me a better teacher; a better

> advocate; a responsible employer; and a more honest, lover, daughter,

> sister, and friend. I have sucky days, but probably less than most;

> and every day this disability is hard. It is what it is.

>

> Alana

>

>

> >

> > Wow! It seems like your really depressed! Life is harder for us,

> but in

> > general, I'm happier than anybody else I know, besides my wife!

> >

> >

> >

>

>

[Guest guest]

As usual, well said Alana

Kimi

}i{

Visit my myspace page and blogs: _ www.myspace.com/ksmile96_

(http://www.myspace.com/ksmile96) }i{

" We come to love not by finding a perfect person but by learning to see an

imperfect person perfectly " - San Keen

In a message dated 11/21/2008 11:34:17 P.M. Eastern Standard Time,

alrt@... writes:

Lori's post doesn't seem to me to be coming from a place of

depression. In fact, for me, your post Lori, was refreshingly honest.

I found a lot more strength and comfort in my life when I let go of the

defensive posture, " I'm just like everybody else. " You are correct;

when I meet new people, even in the progressive People's Republic of

Berkeley, I am braced for any number of reactions to me, most of which

are affected by my appearance - 55 lbs. of spindly limbs, a squeaky

voice, ventilator whirring, words slightly slurring, and an unexpected

ability to speak articulately. We, like most people with significant

disabilities, have a unique cultural perspective. It's naive to deny

that navigating a world made for " normal " folk is not harder when

having such a disability. Equating the acknowledgment that it's harder

with being depressed is not necessarily logical. Many of us recognize

the difficulties that we endure without becoming depressed. ly,

I'm happy and realistic. This has made me a better teacher; a better

advocate; a responsible employer; and a more honest, lover, daughter,

sister, and friend. I have sucky days, but probably less than most;

and every day this disability is hard. It is what it is.

Alana

>

> Wow! It seems like your really depressed! Life is harder for us,

but in

> general, I'm happier than anybody else I know, besides my wife!

>

>

>

**************One site has it all. Your email accounts, your social networks,

and the things you love. Try the new AOL.com

today!(http://pr.atwola.com/promoclk/100000075x1212962939x1200825291/aol?redir=h\

ttp://www.aol.com/?optin=new-dp

%26icid=aolcom40vanity%26ncid=emlcntaolcom00000001)

[Guest guest]

To you as well!  I think that we all try to normalize of lives and do the best

we can in everything we do.

Lori

________________________________

From: Hogan <kh78748@...>

Sent: Saturday, November 22, 2008 11:29:11 AM

Subject: Re: Re: SMA family on the news

 

 

....Thanks for your posts Lori and Alana, they were well written and truly spoke

to me.  Please feel free to contact me with any thoughts or comments.

[Guest guest]

Ditto to that.

________________________________

From: " Ksmile96@... " <Ksmile96@...>

Sent: Sunday, November 23, 2008 11:58:01 AM

Subject: Re: Re: SMA family on the news

As usual, well said Alana

Kimi

}i{

Visit my myspace page and blogs: _ www.myspace. com/ksmile96_

(http://www.myspace. com/ksmile96) }i{

" We come to love not by finding a perfect person but by learning to see an

imperfect person perfectly " - San Keen

In a message dated 11/21/2008 11:34:17 P.M. Eastern Standard Time,

alrtcomcast (DOT) net writes:

Lori's post doesn't seem to me to be coming from a place of

depression. In fact, for me, your post Lori, was refreshingly honest.

I found a lot more strength and comfort in my life when I let go of the

defensive posture, " I'm just like everybody else. " You are correct;

when I meet new people, even in the progressive People's Republic of

Berkeley, I am braced for any number of reactions to me, most of which

are affected by my appearance - 55 lbs. of spindly limbs, a squeaky

voice, ventilator whirring, words slightly slurring, and an unexpected

ability to speak articulately. We, like most people with significant

disabilities, have a unique cultural perspective. It's naive to deny

that navigating a world made for " normal " folk is not harder when

having such a disability. Equating the acknowledgment that it's harder

with being depressed is not necessarily logical. Many of us recognize

the difficulties that we endure without becoming depressed. ly,

I'm happy and realistic. This has made me a better teacher; a better

advocate; a responsible employer; and a more honest, lover, daughter,

sister, and friend. I have sucky days, but probably less than most;

and every day this disability is hard. It is what it is.

Alana

>

> Wow! It seems like your really depressed! Life is harder for us,

but in

> general, I'm happier than anybody else I know, besides my wife!

>

>

>

************ **One site has it all. Your email accounts, your social networks,

and the things you love. Try the new AOL.com

today!(http://pr.atwola. com/promoclk/ 100000075x121296 2939x1200825291/

aol?redir= http://www. aol.com/? optin=new- dp

%26icid=aolcom40van ity%26ncid= emlcntaolcom0000 0001)