To All On CEDA please read Re: Jeff

[Guest guest]

Hello Everyone,

I would like to clear up a couple of things about my most recent post to the

list.

The email was not meant as an attack nor was it my intentions to get to

leave the list, and I hope that she reconsiders her decision. You see I feel

greatly affected and empowered by the experiences in my life (I will explain

more in a bit) and I now feel very pasionate towards helping people get past the

'bad' of EDS and turn it into something that they can live with instead of fear.

I was by no means trying to say what to do as a parent, what I was trying to do

was express what it is like to feel from the child's point of view. As a child

it is very hard to understand why? Why you are not being alowed to do anything?

Why you are being told 'don't do this or don't do that'? Why you are in a

" bubble " ? While I was going through all of this and experiencing the unknown

world of EDS I never said anything, I internalized it all...every last thought,

word and emotion. This is not a healthy thing to do, whether you are coping

with a disability or not, it is just not healthy. The more I internalized my

emotions the less I felt I could express them. This unfortunately turned in to

an out of control downward spiral and at the age of 16 I had to be hospitalized

for a nervous break down with suicidal thoughts. It was to the point where I

believed that if I wasn't able to live my life the way I wanted to what was the

point of living. I CANNOT express what a horrible, scary, lonely feeling this

is and this is what I fear happening to many people especially children who

don't always know how to express themselves.

I do not know exactly how much I will be able to explain this as it is still

very difficult for me, embarassing and just hard. I probably shouldn't be here

to type this email today and each day I thank God that I am. 2 years ago I was

attending school in Toronto and had the liberty to take residence with Jill's

family but while there I did something very stupid. And Jill had the horrible

job to phone my parents from the hospital to tell them that they better get to

Toronto quick to say good-bye. I truly believe that God has a master plan and

it was not time for me to end my quest but to continue on with a specific

purpose. What that purpose is I do not know for sure, but along my way I try to

help.

Since that point 2 years ago (with a full complete recovery), I have taken a

brand new outlook on life as I have said earlier. I am a fairly easy going guy

and I at least think that I have grown into a very good, kind, loving,

responsible man. I always try to find the positive in a situation and focus on

that, it is good to try and rid yourself of " toxic " things (such as bad doctors,

and believe me I've had my share of those too). It isn't good to carry those

burdens and/or grudges around with you.

I would also like everyone to please keep in mind that often, e-mails are not

completely understood because they lack emotion. By this I mean you can't get a

full understanding of what is being said because you do not hear the tone of the

person's voice or see any body language they may normally show in a face to face

conversation. So as wonderful as technology may be it can also be a hinderance

on human communication as people can and often do get the wrong impression.

Jeff