I was organizing some information on my blog this weekend, and came across this video – it was like being slammed back in time.

Texas Children’s Hospital has created a video to introduce folks to the Congenital Heart Defect surgical program there, and the video takes you through so many places that I now know so intimately that it was a bizarre experience to watch it. My husband and I watched the video, periodically shouting out observations.

That’s the parking lot we walked through to go eat! Well, now we know who gets those spots. [snap]

That’s the Physician’s Assistant that updated us through Jacob’s surgery!

Oh, man. I don’t even want to look at those chairs. How did we ever sleep in those?

Rounds! At least our room was bigger so we could fit all those folks in but, damn, I remember that crowd.

Hey, our CVICU room was right down that hall!

There’s one of his nurses! Remember her?

There’s Dr. McKenzie!

It was bizarre, almost like watching a home movie you didn’t know you’d made. It all felt so incredibly, incredibly familiar.

We hadn’t seen the operating room before this video. I noticed that both my husband and I seemed to hold our breathe, just a little bit – that might have been the very same room that Jacob’s surgery took place in. There was a scene much like that one just six months ago with our kid on the table.

Was it only six months ago?

One of the things that the video brings up is the issue with coming after someone with less skill has operated on a child – my husband and I both looked at each other and swallowed. That was us. As they mentioned how difficult it was to go in again, and again, and the complications. We grew silent.

We were glad we watched it, though. We struggled so much getting to TCH that many things we had to attempt to figure out on our own, one of those things being whether we leave Austin and travel for surgery. Once we decided to gamble and do it, we could tell we had made the right decision based on the outcome, but some of the contracts that they made in the video were things we realized ourselves as well.

Jacob’s previous surgeries were both fairly short – in by 5 or 6 am and out and in ICU by 12 pm, only on bypass for about two hours. This one was an interminable 8 hours long. It was clear that TCH and Dr. McKenzie took more time, were more thorough, and the team was much bigger.

The gathering in the child’s room in the video where it seems like there are white coats tucked in every nook and cranny? Yeah, everyone in CVICU got the doctor mob at 6am. Or sometimes 5:30 am. Either way, they were your alarm clock. I guarantee you, there is no snooze to be had.

I absolutely concur that there is a remarkable, tangible, noticeable difference between having things done locally if heart surgeries are not a daily thing, and a hospital rated as one of the best in the country. And this video is right, and I blogged about before – no one tells you that.

Since it’s rare people tell you that, I thought I’d reiterate again. Upgrade. If you can, upgrade. You’ll be glad you did, and if you need a personal recommendation, TCH is awesome. Feel free to ask me about the medical care there.

And what to eat, and not eat, in the St. Luke’s cafeteria. I’m an expert on that now, too.

For how we wound up at TCH, see http://scattershot.jenlepp.com/2011/12/2011-wrap-up-what-i-learned-about-chd-and-how-to-get-world-class-surgeons-to-take-your-case/

A week or so ago, I bought Twitter followers. Why?

Well, honestly, I was bored.

Ok, and I was kind of curious after following the case of the civilly litigated Twitter followers, arguments about what they’re worth, and all of the legal implications of Noah Kravitz’s case. The snarky comment on Mashable and finding out you could buy Twitter followers made me wonder if buying twitter followers was just that cheap and easy and whether there were any benefits – and, yes, it was just that cheap and easy. The benefits?

From my perspective at the time I got them and checked over my new friends, they were essentially worthless – fake accounts with no engagement. Not real people. They did nothing but sit there. Zombies.

My Zombie Posse.

While initially, I wanted to point out the absurdity of placing a value on Twitter follower numbers, I also got curious as to whether purchasing 500 followers for $9.99 would fool any of the algorithms that are out there claiming to measure (and value) our social interactions and, to some extent, who we are on social media. Was there any real, tangible benefit to this?

On that, we now have an answer, and it is most emphatically yes.

The Initial Klout Bump

A day after I bought, paid for, and received my Zombie Posse, I had a little bit of a Klout bump, and I felt that was enough to prove that you could fool Klout, at least a little bit.

I was wrong, though. I was totally wrong that you could fool Klout a little bit.

I logged in yesterday to find that you can fool Klout one hell of a lot.

For $9.99 my score went from the 39’s to a solid 52 – 14 point raise in just days, and the only reason that raise could have happened to that extent was due to my Zombie Posse.

Nothing I wrote got major attention, there’s no major traffic change on my blog, Google Analytics isn’t claiming anyone is any more interested in me than they were a month ago, and I haven’t picked up all that many legit followers. Justin Beiber didn’t suddenly start following me.

It almost makes me want to plunk down another $10 and see how far it would go up again, but I am intending to delete all these and I’m already dreading removing all 560-ish that I bought for this little experiment.

I’m not curious enough to spend all that time nuking 1,000 Zombies.

The Benefits of a Zombie Posse

I did get a pretty tangible potential financial benefit from the Zombie Posse – I have far more Klout Perk offers than I did at my old number.

No, I am not going to take advantage of them. While I think it’s ridiculous it’s this easy to add value to yourself I also feel like it’s dishonest. Despite the fact that I can’t find anything that states you cannot pay someone to have their account or accounts follow you in Twitter or Klout’s terms, I just don’t think it’s ok.

Some perks appear to be valuable enough to make me break even on my $10 investment, and the companies offering those no doubt assume I am more influential than I am.

My Zombie Posse, nearly half of my followers and my entire 14+ Klout bump, will not buy their products.

OMG, you showed people how to do this!

This really wasn’t that hard to do, or come across, and anyone that would do it “for real” likely knows when, where, and how to do it or could find it pretty darn quick. 14 Klout Points for $10 is pretty cheap. (And lest people think I am picking on Klout, Tweet Grader also shot me up to the #2 most influential tweeter in Liberty Hill, so it’s not just Klout.)

I think people that will do it will do it, and if this shows anything its that you can’t judge a person by their number of followers, their Klout store, or any other BS measurement of proprietary whatever the hell that marketers seem to claim they can pare people down to.

I also think Klout needs to fix their algorithm and I hope this is seen by them – fooling them shouldn’t be this easy, and adding 500+ followers in 4 hours and then coming to a full stop should set off some kind of alarm bells. Every follower had never tweeted, had few followers – surely something could have picked up on this before it was given 14 points and a higher tier level of perks?

Maybe now that I’m rated a 52, I have enough Klout for them to pay attention.

So what’s the point of it all?

The bottom line point, in my opinion, is that connections really can’t be quantitatively measured and the qualitative judgment needed to decide what someone’s value is ain’t in a computer or algorithm just yet. If you can’t quantitatively measure follower value or Twitter account value, you sure as hell can’t put a dollar amount on it.

So, original point of absurdity from the first post stands.

It also shows that you should embrace Twitter spammers when they follow you. Those people might get you a free Axe body spray on Klout.

(For the original post and the purchasing of a Zombie Posse, see  http://scattershot.jenlepp.com/2012/01/buying-selling-and-valuing-twitter-followers/ )

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

©1987 by Emily Perl Kingsley

When I first became a parent, I got lucky. I had a year and a half of thinking that I was just like everyone else. I had won the lotto, baby was healthy, everything was good. Everything was fine. I don’t really remember what that was like, now, but I figure it must have been pretty damn good. Comparatively, anyway.

I must have enjoyed Italy, even though I really had been in Holland all along. Had I known I was going to Holland, I think I would have appreciated thinking I was in Italy a whole lot more. And I admit, I kept trying to go back there. Desperately.

For the first part of the diagnosis and adjusting to the new reality, I believed there was a cure. I don’t think anyone told me that there was, specifically, but I interpreted what the doctors were saying as “This is bad, but we’ll fix it, and your child will have to have a Cardiology appointment every year, and you’ll more or less live a normal life.” And between the first and second surgery, I did just that – we came, we saw, we conquered, we’re done.

The second surgery was the proverbial cold-water shock – we conquered. What the hell? Weren’t we just here? What the hell do you mean, again? That second time was tough.

I hated Holland then. Hated it.

Those statements that I ignored started coming back to me, because I had been so sure that everything would be fine I didn’t register them. I remembered being told that 50% of the time, the defect is corrected and nothing more ever really needs to be done. I also remember if you were the other 50% and came back once, the trend was that you came back often.

It was that first time we “came back”, that second surgery, that I realized life had changed irrevocably, permanently, forever, and that deluding myself that I would ever somehow get back to Italy and that we would just be like everyone else would never actually happen. This would always be Holland.

I think the worst part of being in Holland is making your child give up the dream of Italy, though. Hands down.

Well, we’ve jumped the shark at Twitter – followers are no longer connections. They’re now a commodity.

Granted, participants in social networks have always been, to some extent, a commodity. Lifehacker brought attention to a great quote found on metafilter:

if you’re not paying for something, you’re not the customer; you’re the product being sold

I’ve been watching The case of Noah Kravitz and his former companies Twitter lawsuit against him with quite a bit of interest. You can follow the link to read all about it, but the long and short of it is that the company is claiming that Twitter followers are property that can be valued. By their valuation, my account:

is worth $22,110 a year, and by their reasoning, I could use my Twitter followers as collateral for a cheap car.

Ok, maybe not.

There was an interesting passage in the Mashable article that got me thinking:

The suit, if it goes to trial, could establish a number of precedents in the online world. “This seems to be the first case of someone legally trying to put a valuation on a follower,” notes Kravitz. And that valuation, $2.50, is significantly higher than you might expect — given that you can buy Twitter followers on eBay for less than a penny each.

I was pretty stunned at that – I didn’t know you could buy and sell followers.

I had read all the “Get Moar Followerz OMG NaO” tricks (the mass follow to Twitter Limit, wait for follow backs, dump non-follows, and then start again) but I didn’t know you could waltz on to Ebay, dump a few bucks, and get followers. I wondered if it would work and, if it did, what it would really get me.

So, I tried it. Can you buy followers? Turns out, you can.

Buying a Zombie Posse

Not wanting to hand my account’s password out left me with fewer options, and I opted for this particular sale:

I “bought it now”, paid $9.99, and within 6 hours had an email asking me for the Twitter account. I responded with my account, and 6 hours after that on New Year’s Eve, the follow notices of my plethora of new followers began rolling in. I actually got some extra followers – 569 by the end of the run, a 69 follower bonus.

Within 48 hours, my follower count had been plumped up:

and Klout was a little more impressed with me:

Only problem?

None of these followers were real people:

Most had pictures (potentially stolen from Facebook), no account had ever tweeted a single time (or not that I found from a sampling), most followed people in the 60-80 range (giving you some indication of how many people had purchased this service before), and had 3 to 5 followers. All were clearly simply fake accounts that enabled someone on Ebay to sell a follower number to people that wanted followers, but did not have them.

These fake followers, however, were clearly enough to fool Klout’s algorithm a bit despite it being patently obvious that no one gains one to two followers per minute for 4-5 hours and then suddenly stops.

I should mention that my Kred score of 723 did not move a single inch, since Kred measures engagement, not followers. Go Kred.

So why buy followers?

I likely will leave my zombie posse hanging around for a month or so as I am curious as to the affect they will have on various scoring mechanisms over a longer term, and then will take some time to block them all to see what the drop correlates to – and because it does kind of feel icky and dishonest to have them there.

It brings up very interesting questions regarding Klout and its algorithm, as well as whether you really can judge someone’s expertise by their follower count or their follow to follower ratio if it’s this easy to obtain followers to plump your numbers (as this is really the only thing that purchasing fake followers is good for). As social media achievements find their way onto resumes and get people jobs, ethical questions arise if you can so very easily purchase an accomplishment bluff.

I’ll be watching Noah’s case really closely, because if PhoneDog is right, for a $9.99 investment I just brought my Twitter account’s value from $22,110 to $39,480 a year. If they’re right, buying $1,665 worth of Ebay Twitter followers a month for a year would get me a million dollar valuation by the end of that year.

I could retire on my zombie posse! That’s the best ROI I have ever seen!

Again, not really.

And that’s why I think this case is absurd.

(For a followup to this post and to see what happened to my Klout, see http://scattershot.jenlepp.com/2012/01/buy-a-twitter-zombie-posse-get-klout/ )

Years ago, we would sit in a room with all this very expensive equipment, look at all the lights and lines and blinkies and we’d have no clue what they all mean. You’d have to spend time asking Nurses what it all meant and as long as they’re not busy, they’re almost always happy to tell you what’s what.

With the advent of the Internet and YouTube, more and more medical and nursing specific information has been made available to parents and patients everywhere. You can sit through lectures that were recorded, see animations that explain in further depth what your doctor’s hand-edited heart diagram may not have completely get across, and find a lot more information.

One of my favorite series is an EKG Series by Nurse Educator Michele Kunz on YouTube. She is a certified American Heart Association (AHA) instructor and teaches Advanced Cardiac Life Support (ACLS), Basic Cardiac Life Support (BCLS); Pediatric Advanced Life Support (PALS); and Pediatric Emergency Assessment Recognition and Stabilization (PEARS) and teaches the medical staff of over 600 hospitals, medical offices, and surgi-centers in New York City (Manhattan, Bronx, Brooklyn, Queens), Westchester, and on Long Island (Nassau and Suffolk).

Since EKG’s are an omnipresent happening in a CHDer’s life, it helps to understand a bit about them. I would definitely advise waiting for the medical interpretation before panicking and diagnosing your own child, but being able to look over and understand what is being measures and in general what the machine is doing and saying in general is a good skill to have for a CHD parent.

For example, after we left this last surgery with a heart block, I hadn’t heard the word “bradycardia” from anyone, or “Third Degree Heart Block”, but I was able to look up enough of what I was told (full heart block) to understand that’s what we had from the heart rates and the statements that the “first and second” electrical systems weren’t working, and that we only have “the third” at 30-ish beats per minute, which would denote only the bundle-branch Purkinje system working.

A good portion of the series focuses an on overview of immediate treatments for the issues, as it is geared towards nursing students, but watching the videos did give me a fairly good understanding of the EKG machine and what information it’s gathering.

YouTube searches for your child’s specific CHD may turn up more medical information then you would think that will help de-mystify some of the medical jargon and diagnostic treatment situations that CHDers face.

Nurse Kunz’s channel is here: http://www.youtube.com/user/michelekunz

2011 was, unequivocally, the worst year we’ve had with CHD, and since we’ve been doing this for 11 years now, that’s saying something. We had two hospital visits, three surgeries (one of which was open heart), and a multi-month odyssey of frustration. It’s that multi-month odyssey I want to address.

When No One Agrees

2011’s CHD Odyssey began with bad numbers, and the announcement that the open heart surgery we had dreaded but that we knew would come up eventually was here. The Cardiologist sent us first to the hospital for Cardiac Catheterization and an Esophageal Echo to get more information for the surgeons, and then had us set an appointment with the surgeon to make plans for the surgery. The options presented to us were mechanical valve and the Ross by the Cardiologist.

The appointment 6 weeks later with the surgeon did not go well – he was, in fact, baffled that we were there as he stated that he would not do or perform either surgery (which was the first we had heard of that). Angry and stunned, we went back to the Cardiologist trying to understand what the situation was, and to make a long story short, no one seemed to really know – the Cardiologist had stated the surgery was needed soon. The surgeon stated we could wait six months but even if he did, he would not perform the Ross. No one was on the same page, and once they all knew that, everyone began back-peddling.

We went to our Pediatrician and explained the situation, and expressed our frustration – these were the people we had trusted for 11 years. Their statements did not agree, and nothing made sense – the Cardiologist stated that other surgeons at the conference felt different. When we had asked the surgeon about it, he pronounced that he more or less didn’t care what anyone else said. He was our child’s surgeon, and he would not perform certain procedures, and it was his decision. End of story. Our pediatrician hugged us, and recommended we get a second opinion, immediately, which we did.

All doctors are not the same.

This was a situation we were unfamiliar with. When Jacob was diagnosed, we did get a second opinion but after that, we relied on our local medical team. No one ever told us that Jacob’s situation was particularly complex or challenging, and so we stayed local figuring a doctor is a doctor, and a surgeon is a surgeon.

We were very, very, very wrong. And many local medical professionals will not tell you when your child’s case is out of their depth or is pushing their skills to the limit. No one ever, ever told us that we would get better care and far more skilled surgeons by leaving town. It is something that someone should have let us know. If no one has let you know, then let me be the first to tell you.

After investigating options from traveling to Boston, the holy grail of pediatric cardiac centers, we settled on Houston, as it was three hours away and ranked Ranked #4 in Pediatrics: Cardiology & Heart Surgery . We figured if we had to go to Boston, we would, but since this was three hours away we would give it a shot.

The Process

The process for getting our child seen was rather daunting, and what I am going to outline is what we experienced getting into a world class facility without being referred by a medical professional (which, I imagine, is much easier). I spoke to other folks at Holcombe House and the process seemed fairly similar for all of us not referred there, but who took the referral and upgrade into our own hands.

1. Check your insurance and make sure it covers a second opinion, and whether it covers travel to do so. Pick as highly ranked a hospital in your specialty as you can afford to travel to, especially if their choice to treat may require a long term hospital stay, in case your insurance will not pay. Connect with the Ronald McDonald House and find out how to get in it for the trip.
2. Call the hospital, and state you would like to come for a second opinion. They will take your information, and let you know that they will want to see every scrap of information before deciding whether to get involved. From there, start haunting your current doctors, and be prepared to hound them – we were told that our surgeon was “re-writing” the appointment notes before sending it, which took him a full two weeks to get to them.
3. Wait politely, but keep calling. Within two weeks, we were called and informed that one of the surgeons chose to take our case. Since all those that we met wound up successfully being seen and “upgrading”, I can’t really speak of what to do if you are told no.
4. Drop everything and get there as fast as you can when they can see you.

The Result

The appointment we had with the surgeon blindsided and alarmed us in many, many ways.

We were told about an issue with the Mitral Valve that we had never heard of before. Jacob’s stenosis had been repaired twice before, and no one in Austin had mentioned trying another repair a third time – we were informed by the surgeon in Houston, however, that the repair that had been done was not the greatest, and because the most ideal solution would be for Jacob to keep his Valve, he wanted to attempt it a third time.

The surgeon also let us know that he would have no problem performing the Ross, or replacing the valve, and that he saw no reason to wait or why those options would be off the table. When we asked why the surgeon in Austin had been so against them, he politely stated he could not say as he saw no issue. The appointment was diametrically opposed to the experience we had in Austin.

We left the appointment feeling hopeful, as well as devastated – if we had come here first, would we have had three open heart surgeries? Why had no one stated that with Jacob’s repair, the surgeon’s skill and experience was so important to long term outcome?

The guilt was overwhelming. The anger, as well.

We were reminded how rare it is for a repair of this nature to need to be redone the entire time we were in the hospital in Houston as Cardiac nurses expressed surprise that this was our third time at the dance. A second time is rare. Apparently a third time is unheard of.

In the end, the surgeon performed the repair, and we did not need the Ross or the Mechanical Valve. The surgery was 8 hours long, double the length of any surgery that we had in Austin. The surgeon’s description of it made it clear that it was extremely tedious, painstaking, and very challenging. But, he said, it was the best thing for Jacob to keep his own valve. Even though the surgeon had a few moments where he thought perhaps he could not do it, and even though he warned us one mistake would destroy the valve, he said that he felt that for Jacob he had to try.

We may be wrong, but we believe that the surgeon in Austin simply did not have the skill to do the best thing for Jacob – and we believe he was simply too arrogant to admit it. We thank him for his arrogance, condescension, and unwillingness to operate, though – without it, we never would have gone to Houston and we have no doubt our outcome would have been different. Especially since the “best” pediatric cardiothoracic surgeon in Austin was unwilling to consider what Houston actually accomplished.

How do you know when it’s time to stop accepting and time to start fighting harder?

Unfortunately, I don’t know – for us, it was glaring. We were getting one story from the Cardiologist, one story from the surgeon, were told of other local surgeons with differing opinions, and so we were able to tell that there was a huge flashing warning light that something wasn’t right. We had no choice but to stop trusting, and start demanding answers that we could be satisfied with. If you’re not smacked in the face with it, it may be harder to discern that it’s time to upgrade.

If you feel deep in your gut something isn’t right, if what the specialists are all telling you doesn’t agree, if you just feel something tugging at you that something is missing, if you are not 100% comfortable, get a second opinion and get as world renown and highly ranked a second opinion as you can possibly afford. If you can’t afford it, there are charities that can help. Do a fundraiser. Call the press. Do something.

As difficult and financially tough as it is, one of the biggest and most involved conversations we had with other parents was how few of us were told that our kids had exhausted the local expertise. Many of us had to fight for the referral, and many of us had to do it ourselves. Most of us were not told, and those that were usually were told when it was almost too late.

If something deep within you stirs and hints that you need to get a better opinion or better care, do it. Don’t wait for them to tell you it’s time.

Ok, this wasn’t today, but I had it around and thought it was pretty funny.

This was today:

For those unaware, Paul is the brilliant PR Guy behind the Penny Arcade Avenger Controller Fiasco/Wwebsite Meme. Ok, I got got – it’s a parody account. Ironically, a very believable one.

Some folks just need to step away from the computer. Step away, folks.

I am ridiculously excited about this movie.

I came late to the books, having read them only last month (and having devoured them in less than a week) after seeing people become ridiculously excited about the movie.

I was blown away by the story.

Having read the books and been converted to an overnight fan, I can say that this is one of the few cinematic interpretations of a loved book that I am looking forward to, and much of the trailer looks hauntingly familiar.

If you haven’t read the book yet, I highly recommend it. If you have, I highly suggest watching the trailer and getting silly excited. This may be one that I’ll wind up midnighting just to see.

May the odds be ever in your favor.

Ben Breedlove, an Austin teen with CHD, passed away on Christmas Day at just 18 years old.

Please watch his story, and remember.

and Part 3.

Our heart breaks for the Breedloves. You’ll be missed, Ben.

I was astounded when Matisyahu shaved his beard and tweeted it – TWEETED IT! As a fan of his music and someone who was also drawn to it because of its Jewish content, I was both astounded at the action and a little awed.

My son and husband met Matisyahu (the picture of Matis with Jacob is one of my favorites) – though I was there, I did not. I did chase him through Zilker mostly for Jacob – when your child lives with a deadly disease, you sometimes go out of your way to give them “special” experiences in some ridiculously trite belief that you are making up for open heart surgeries, and this was one I thought he would remember as special.

And I wasn’t even Make a Wish, so it felt good.

But I wouldn’t go say hello to the man. Though I was arguably the biggest fan (Jacob comes a close second), had bought the tickets, and convinced everyone to shlep to Zilker Park when he announced on Twitter he would be there hanging out beforehand so Jacob could meet him, I never spoke to the man.

His piousness intimidated me.

As someone adopted into a Jewish family, but not born from a Jewish birthmother, I have had my issues with Judaism. By Reform and Conservative rules, I am Jewish – by Orthodox rules, I have to prove my conversion as an infant through a recognized Beit Dein (of which I do not know if I could, nor have I ever felt the need). I fell in love with a “very Jewish” boy in college, and a relationship that I thought would end in marriage instead ended completely when he informed me we could not be married as I wasn’t “really Jewish”.

After years of Hebrew School, a Bat Mitzvah, and countless days at Jewish Summer Camp, this really tends to piss you of.

There were other moments. My Jewish CEO boss in New York was often visited by salesmen of every type and one day a Chasidic man came to entice him to study (and probably to donate). When I said, after his spiel, I was interested in studying Kabbalah, the man leaned forward and said “You cannot! Females cannot learn Kabbalah. You are a woman!”

It was moments like these that pushed me away from Judaism in my twenties. I yearned for a deeper truth, and once I felt there was none to be had, I just yearned for people and a community that weren’t utterly judgmental assholes.

Flash forward to having a child, and those Bat Mitzvah oaths to raise a child in Judaism start to coming nagging back at you and you hear echoes of your dead grandmother in your head lecturing you. And so, you do what you can. At least I did.

While there is no Jewish celebrity shortage, there is a shortage of celebrities that use Judaism as anything other than a punchline. Matis doesn’t do that, and so for Jacob and his Judaism, there’s a larger sense of pride there.

And then…. he shaved.

While I am not Orthodox and never have been (though there was a time I looked into become Baal Teshuvah until I remembered I was still female) I was aware of the rules of the beard of different sects and what the shaving of the beard could mean. In the Torah says not to round the corners of hair, hence the side curls (called payot) – they are forbidden, on men, to ever be cut. For Hasidim, who are Kabbalists, the Kabbalah attributes holiness to the beard and they consider it a sin to cut it.

Matis’s act of cutting the beard was seemed a public, open defiance to rules he had embraced. His statement was vague, and some people speculated that he left Judaism altogether. He later posted that he had not, and clarified further why he had grown, and then shaved, the beard in an interview with Rolling Stone.

While the frum community has been up in arms about what this could really mean, and more had been written about the man shaving than I suspect has been written about any haircut in history save the story of Samson and Delilah, it took me a few days to process my own thoughts about it.

I was the fan that was afraid to talk to him precisely because of his beard and all that I felt it represented. It was because of the inadequacies I felt that he would judge, because of all those bearded men from my past who I gravitated toward for answers but who then told me that I – because I was adopted, because I was a woman, because because because – was not good enough.

To some extent, as I watch people denigrate his choice and his Jewishness, I sympathize with him because of how many times I have felt that in the past. How quickly they turn. I have read things that make me cringe, they are so negative. I won’t link to them. They’re that bad.

What I do know is that this act and how the Jewish community received it has made a point about more then a beard.

It has made a point about acceptance of free will choices in not just the Jewish community but the wider religious communities as a whole. Whether Matisyahu has a beard really doesn’t affect anyone other than Matisyahu, and yet the whole Jewish world has an opinion on it. It must be gratifying to learn that so many people are that concerned with your soul that they spend so much time penning articles and wringing hands about your hair.

And even as I wind this up, I wonder myself – was this the most important thing I could have written about? A man’s beard? A shifting of his private religious beliefs that just so happen to coincide with a public haircut?

You would think we have nothing else to talk about.

“I am at the Union for Reform Judaism Biennial, about to hear President Obama with 6,000 other Reform Jews, and you ask me about Matisyahu’s beard?” Rabbi Joel Abraham, the bearded leader of the Reform congregation Temple Sholom in Fanwood, wrote in an e-mail.

I also know that if I happen to meet Matisyahu again, I won’t be too intimidated to say hello. I can’t say the same about the frum community that is wringing their hands and finger pointing like this is a catastrophe of epic proportions.