We are alive

In the last two weeks I have received a spate of emails asking if we are ok. I am not sure the answer to that, but we are alive, and actually, on a bit of an up swing.

I have always tried to keep this blog about me and Pearlsky, inclusive. I don’t talk about my personal life, that is not what this is about. The past year though, that life had gotten out of control for many reasons. And that has thrown everything off. I am starting to feel like it is back under control. Sort of. Kind of.

In brief, I got very depressed. Not clinically (or so my machismo says), but probably close. I was pulled down a rabbit hole, albeit I went willingly. On top of that was the incident with Pearlsky at school (more on that in a bit), stuff with my immediate family, my health, work shit, and you name it. All of that AND the usual Pearlsky stuff that this blog is made of.

Several things have come together to pick me up. I have started two new business ventures, my primary one started failing because of several issues (some in my control, several not). I now have two other ventures, and wouldn’t you know it, the old mainstay just got two new contracts and is back on the upswing. I will be talking about the new ventures; they very well may involve all of you. And, of course, special friends have helped.

I was searching for a book for my step daughter (don’t ask, and no, you don’t know about her, and no, she is not really a real step daughter, but me and her feel she is, so there) and when I bought it for her, my first thought was that I should read it as well. At this point I have purchased six copies and gave it to people who have all thanked me. If in your life there is anybody whose actions have an effect on your actions or behavior, then it is a book for you. If someone else (typically a spouse, could be a parent or child, close friend, etc. and often addicted to something) does stuff that makes you crazy, paralyzes you, makes you worry above and beyond, then you may benefit. Just putting it out there … Codependent No More.

The school district agreed, actually suggested, getting Pearlsky into an adult program as soon as possible after the incident last summer. We visited several and liked two of them. The school sent “packets” to them both. At first there was great interest and all looked like a “go,” then bizarre silence. The programs would not return calls or emails. From me. From the school. From my advocate. From my big time lawyers. We have no idea, and if you are saying “what the fuck?” … so are we. I am meeting with the lawyers next week. Will keep you informed.

No, no R.V. yet, but a touch of movement on that. More soon.

I’ve asked here about those of you dealing with peripheral neuropathy since there is a connection with it and the amino acid Pearlsky needs to survive. Now it is associated with other issues, other kinds of nerve pain, and even with ALS. If you have any of those, feel free to contact me … I have information for you. Really. Especially ALS (Lou Gehrig’s disease).

I mentioned some new businesses. I have started a special education advocacy group. I have a team of people (six so far) with vast special ed experience. Most of the laws and regulations are based on federal law (IDEA, ADA, NCLB, etc.) and the state laws and regulations are easy to find. If you are having issues with your school, you may want to let us know … never know what we can do for you. Let’s face it, I can write a pretty good email.

So yes, I am back, I hope. I miss this blog terribly. And to tell you the truth, I have been missing me terribly.

I can beat this. I will. Thanks for caring. Especially those the last few weeks, sorry I did not return the emails, I will do better. But again, thanks. It means more than you know.

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Half truths and exhaustion

I noticed a small red patch near Pearlsky’s eye yesterday. No one knew why it happened, does not really matter. No big deal. This morning it was more of a bruise, lucky she does not have a black eye I guess. Whatever. Pearlsky did it to herself. It is no big deal.

She went to school.

As I have everyday since she was molested there, I went to school to check on her. She knows it, I know it.

I am proud of the fact that all I write on this blog is true. I only change names. Here is the conversation with the teacher, her words are all true, mine, well, this how I should have answered, not how I did.

What happened to Pearlsky’s eye? She came in that way.

Fuck you.

When did you notice it?

Fuck you.

What did you do when you saw it?

Fuck you. Do you want to see the bruise on my ass?

I did ask if every student in the school is quizzed about every bruise, scratch or mark they come in with. And then I happened to mention …

You ask me this in the very room from which Pearlsky came home with her eye partially swollen shut, her bra on backwards and a cut on her vulva?

I am tired.

Sleep does nothing for this kind of tired.

My mind is tired.

My soul is tired.

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Add it to the list …

I still really, really, really need to get an RV modified for Pearlsky and me and friends. And my plans are actually coming together somewhat.

I did find this one …

Clotho says that if it comes with those shoes, go for it!

There is this woman I was supposed to marry (no, not the one in the picture above) (but, if she does come with the RV, and those shoes, …). Met her when I was two days old. Really. I think I messed up by taking her to the opening of the original Star Wars before finding out she hated SciFi (this was 18 years after we first met). Anyway … she is now a big shot genetics lab director at a big shot hospital / medical school (happens to be the hospital where I was born!) (and yes, she is a month older than me, which makes her older than older-than-dirt). She happened to have been asked a few months ago if she would add to a nation-wide (or more) used prenatal genetic screen test a test for the amino acid deficiency that Pearlsky and David have by the very anal and infinitely brilliant and wonderful researcher who found the error (the error was first located in the genome because of Pearlsky’s and my cells). Today she tells me the test has been added to an expanded genetic test panel! In their testing, they have found that the mutation frequency is ~1:280 in my particular expanded gene pool, very low by their standards, incredibly high by mine. Somewhat confusing in that the first mentions of the “disability” concern my children just under twenty years ago. One would think that if the rate of carriers in my community is one in two hundred eighty, more cases would be known. Maybe we only procreate with outsiders. Leads one to wonder about all the undiagnosed kids …

I was supposed to marry her seeing that we grew up together, etc., but alas, Luke Skywalker killed that idea. She is a nationally famous genetics researcher-lab-director … maybe she can afford the RV …

Or not. But maybe some families will now be that much more informed.

How cool is this?

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Too much time on her hands …

Obviously, one of my (truth be told, “favorite”) readers has way too much time on her hands. She actually reads my blog …

This is from the mailbag today:

Happy New Year! or whatever …..

These issues were left unresolved in 2013. I do expect an update on these in the very near future!

Coke versus car – how did the car turn out. Did you end up with a lifetime supply of Coke or what?

What kind of sandwich was it? I thought I might reserve judgement on your “friend” depending on the exact contents of the meal.

When are you going to get the damned RV already and pick us up?

Is your hearing better? Is the tingling / numbness improving? Is being an amino acid junkie all you hoped it would be?

If I win the lottery will you spirit away to Buenos Aires with me for some authentic milonga adventures?

I promise not to tell … did you find someone with an uncle Guido to “take care of” you know who?

There’s probably more but those popped to mind.

Coke versus car – how did the car turn out. Did you end up with a lifetime supply of Coke or what? (reference)

Actually, they ended up repairing the car. Because the frame was spared and the mileage was low, they paid $7500 instead of totaling it! And I drink ginger beer now, so the non-Pepsi thing is moot (we don’t say the “C” word around here anymore).

What kind of sandwich was it? I thought I might reserve judgement on your “friend” depending on the exact contents of the meal. (reference)

That’s a really good point. I would ask her now, but any reference to that day sort of upsets her, so I will assume it was a black Périgord truffle sandwich from Chef Rostang. That does put it into a different light.

When are you going to get the damned RV already and pick us up? (one of several references)

I am seriously yearning more and more for the RV and giving it some serious consideration. I doubt that Rock My RV will ever consider (or know about) us (Call them! Write them!). I cannot afford a retrofitted one and I wonder how much I can do myself. If I can pick one up that is at least mechanically sound, I would modify the inside … may be biting off more than I can chew, but damn, the prospects.

And, dear reader, you can bet your ass I will swing by. And London. And Los Angeles, and Riverside, and Muncie, … I don’t do well partying and escaping alone …

Is your hearing better? Is the tingling / numbness improving? Is being an amino acid junkie all you hoped it would be? (reference)

Excuse me? Didn’t hear the question. Oh, the amino acid! It actually is improving my peripheral neuropathy! There are great things happening there and the research is continuing. I have agreed to go off it for a week or so in a few months to do further testing, but I am sure the pain will return. This I will do for the “greater good” to get some good data.

If I win the lottery will you spirit away to Buenos Aires with me for some authentic milonga adventures? (reference)

In a freaking heartbeat. Hell, if I win, we will drive there in the RV, practicing along the way! (Wheelchair lift, tie downs, and milonga floor are all requirements for the RV.)

I promise not to tell … did you find someone with an uncle Guido to “take care of” you know who? (probable reference)

There are several people that need some “taking care of” in Pearlsky’s and my life. If this is a reference to the summer, I understand that my prime suspect will not be back, but then, neither will Pearlsky. More seriously, I am not one so much for revenge, I leave that to Karma, but I do believe in proper justice under the law. I ran into a local police woman yesterday, I knew her 18 years ago when she worked in the local pizza shop, she has been on the force for 16 years. She has known Pearlsky all her life. She asked how Pearlsky was doing, it turns out she knew only a hint of what happened. I told her the story, which of course made me relive it, and, well, it was a tough hour or two.

And I do have a very dear Sicilian friend, who honestly does have an Uncle Guido! And, come to think of it, she does owe me a favor …

Thank you for the email, the caring, and the thoughts. But alas, you probably do have too much time on your hands …

And to show my age …

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Answer: Carlo Ponti

We all have our fantasies, right? Some of us have fantasies involving Italian women, right? Hmmmm …

Anyway, we all have our fantasies. If you are a reader of this blog, which at least some of you are, then you must share some of the same fantasies I have. I just know it. I, for one, am scared to think of Ken’s, but that is another story.

I have this dream that a wonderful woman contacts me. She tells me of this wonderful place, a place to rest, a place to get back in touch with one’s self, wonderful food, simple company, beautiful surroundings. A place to finally find a bit of peace, albeit for a short amount of time.

Then yet another woman comes to me and says “Single Dad, I have just the place for you … go, unwind, for once think of yourself.”

Usually that is where I wake up.

Not this time …

Elizabeth was a recipient of Caregifted respite grant (see some of her posts here). She encouraged me to apply … which I did. And a few days ago I heard from Heather McHugh, Founder and Executive Director of Caregifted.


Well, no, but somewhere. Somewhere quiet. Somewhere via the wonderful people at Caregifted.

I will share as I learn more …

As for the previous post, about Pearlsky and the new adult program, I just heard from the lawyers. “This makes no sense. Something strange is happening there. I will talk with them more and if it is not resolved this way, we will try something else.”

Johnny Carson was once asked …

If you had to be in a hospital bed for a month, who would you want in the bed next to you?

Carlo Ponti

Why Carlo Ponti?

So I could see his wife, Sophia Loren, walk in every day.

Wasn’t Sophia one of the Three Faiths?

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