pia savage
Source: pia savage

This post is in memory of Carl D Jaffe.

And collectively written by his friends in NLDland.

The photo is a poke weed. So beautiful. Eat it and die. Unless it's thrice boiled; then eat it at your own risk. 

NLD is a lot like the Poke. 

People think you're just like them. Then they get to know you....

Nonverbal learning disorder (NLD) is an insidious disorder. Have you ever swum in the sea with many admiring your form? Suddenly you can't swim anymore. You're so close to shore. There are four possibilities: you will suddenly be able to swim again and make it safely to shore; you will drift to shore; somebody will rescue you; people will stare, do nothing, and you will drown. 

Welcome to NLDland.

Jennifer Kathleen Gibbons:

describes NLD this way:

I saw the movie Inside Out, where all the emotions are little cartoon figures. Anyway, I think with NLD it's multiplied. We're not sure which emotion to go with. We want to be happy, but sometimes it gets muddled.

Some of us are less muddled than others. In June, 2007 I learned about NLD and went back to the doctors I had seen years earlier. Yes I had it. In 2008 I joined Facebook where I soon found NLD groups.

Carl D Jaffe died suddenly last week.

He was loud. He was obnoxious. He was textbook NLD. I was cruel to him though I finally realized he didn't see it that way. Still I hated the way I treated him. I looked long and hard into my internal mirror, and changed my behavior. I never told him he was the catalyst for my change. I wish I had.

None of us in NLDland had met Carl in real life. Yet his death is affecting us as much or more as any death of people we know. So many of us realized how much Carl means to us. His impact on our lives was so much more than what we had ever thought it would be.

 I asked people to share what they wished they had said to Carl.

Marisa Cox:

I wish I told him that he can find happiness in other ways that could have involved going to support groups, going to take a college class in something that interested him where he'd meet more people to connect with.

I really wish I made those suggestions.

I wish I emphasized more how much I cared about him.

I showed it through actions, but I never directly said those words to him enough.

I really did care about him and he was such an amazing person with a kind heart that will not and cannot be forgotten.

Anna Super:

 I never accepted his friend request.

He did annoy me at times because he would ask a question, then push his point, ignoring the perspective he sought..

Talking to him made me feel more lost in a time where I was trying to make sense of myself.

I didn't want to see the world as Carl did, I found other NLD-ers who I was more comfortable seeing myself in and made friends with them.

But I of all people should have known that was how he was learning, how he was finding his way.

When I saw him on Facebook at later times I saw the personal growth he had been working towards, that he had been learning what he set out to.

Leslie Brown Padilla:

I wish that Carl could see the positive impact he had on people in his life, even those of us who just knew him through Facebook. 

He was a very decent human being who struggled mightily with the same issues that afflict all of us with NLD, to varying degrees.

He could be annoying and obtuse at times, but this served as a reminder to look in the mirror when I saw those traits in others....

Anonymous:

He made so much progress from when I first met him. I wish I had picked up the phone. We were his community & family, but he needed people IRL, more so than some others I think.

Carl & Ben have been the two men in the group who have given me the most insight into the struggles my child deals with.

Carl was determined to help me so that my child would have a better experience growing up than he had. That meant a lot to me.

Paula Doucet Throop:

Carl and I did talk about support groups. I told him about the support group I attend every Wednesday and he said he'd like to find a similar one in Chicago but with people he could really relate to.

How I wish I had reminded him of the idea he had a few months ago to move into to a group home.

I wish I could have been relentless with this reminder, assuring him that it wouldn't have to be a long term arrangement.

Instead of my lame, "So sorry you're feeling overwhelmed", I wish I had assured him that there is no shame in leaning on others for his care now and then.

I wish I had been persistent enough to get through to him, so he wouldn't have had to die alone the way he did, dammit.

Susan L Blumberg, PHD:*

Paula, he had all those things in his mind already, really. Look at his page. He was doing some happy things. This was sudden and unexpected. We were lucky to know him, and I think we all helped him.

Joseph Malcolm:

He was always trying to get a handle on both trying to get a leg up on and wrestle with the complexities of our existence and insight into great spiritual truths, politics and social interactions... not uncommon for us NLD'ers.

Which leads me to what I should have said " relax and just be" his sort of frustrated him in his ambitions as he seemed to have a difficult time factoring in that no all people could relate to his positions and opinions without a great deal of contextual reference. 

Carl seemed to be a man who was trying to go in 50 directions all at once, when all he really needed to do is enjoy his existence, and the affection of those around him for him... often trying too hard, and not just letting it happen....

Though I doubt he would see it that way or agree with me on this, Carl being who he was...

He wanted personal fulfillment so bad, you could see he was hurting from lack of it or his own acknowledgement of his own success and was so eager to make it happen and invested a great deal of his energy into making it so.... 

A brilliant man in many ways and I think this sort of frustrated him in his ambitions as he seemed to have a difficult time factoring in that not all people could relate to his positions and opinions without a great deal of contextual reference.

To summarize basically what I would have, should have and could have said to Carl :

"You're a good and worthwhile man" "You are loved and respected just as you are you needn't be alone" "Victory in life is already yours, you just have to live it out"

I would wonder just how many of us could benefit from these affirmations if not as a revelation of intrinsic truth but as time to time re-enforcements to our value.

Susan Keiley: 

I didn't know Carl well but I found him to be welcoming and funny.

I think for some with NLD, while we reach or work towards success, it is difficult to be mindful of savoring the steps and moments to success.

I think we need to be kinder to ourselves. If only one could spend more time enjoying and being proud of ourselves, instead of obsessing about what happens next. 

I wish I could have told Carl that I was proud of all his progress and that I was proud of him. I appreciated his sense of humor and timing when people were disagreeing, it lightened the dynamics.
 

Thanks Carl for being in our lives.

Watching you change was a joy, and it was difficult. It was a joy because after arguing for several years about how you were always right, or refused to change, because you claimed you didn't want to you did change.

One thing that seems to be superficial but isn't. In the world of the Internet, typing in all caps, means you are arguing.

This was pointed out to you, by moi, over and over again. "But I like all caps." "Doesn't matter, Carl, people will think you are angry at them."

Maybe I was wrong in pointing that out over and over again. I felt like a scratched record nobody, especially me, wanted to fix. 

Eventually Carl stopped using all caps, and immediately became a more likable person because he was playing by rules people understand.

Carl wanted to be liked.

He wanted to fit in.

Understanding the rules is difficult for many including people without disabilities. With a disabilty, especially one like NLD, it can be impossible.

Carl was learning.

Who knew where he could have been in two or three years?

That is the difficult part of your death. We don't know how you would have turned out.

Carl was in his 50's.  

I will always believe people can change until the end. Carl showed that.

The only true help for adults with NLD is self help, and help from others with NLD, parents and a few professionals who selflessly volunteer their time.

That shouldn't be. Carl should have been able to get help specific for adults with NLD. Almost five years ago I called NLD, "Asperger's Unknown Cousin" or something like that. It still is.

My first post for Psychology Today was called The Disorder That Gets No Respect.  Damn it still is!

Ben Stone, Rebecca Massie:

Thanks for your help and moral support in the writing of this post.

I'm no longer a member of most NLD Facebook groups but I'm no longer amazed by how incredible most of the people are. 

*Susan L Blumberg 

is a psychologist who specializes in NLD. Very coincidentally, her daughter was born with NLD, sometime after Susan began working with kids with NLD. So she is also an NLD mommy as are Paula and Anonymous who, just for the record, isn't the Anonymous who is planning to take over the world.

We in NLDland can't even take over a little bit of the disability world. Even some people with disabilities think we make ours up. Or we are "so close to normal."

I hope Carl's story shows how close, and how far we are from normal.

I will truly miss you Carl, and can't believe you're gone. I didn't put in all the things you taught me. That would be book length. I hope you know. I hope there is that heaven you believe in, and I'm not sure about. I hope we meet up there, a long time from now, and you rule!

About the Author

Pia Savage

Pia Savage is a writer, journalist, and former social worker diagnosed with Non Verbal Learning Disorder.

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