Topic: Pros and cons to publicly fundraising my CLL (Read 7212 times)

OverrideYourGenetics · « **on:** February 09, 2018, 11:53:38 PM »

I've never read of anyone having done leg lengthening who went public using their real name, for example blogging about it, or talking to the press. Apotheosis was interviewed, but he remained pseudonymous.

I'm considering being public about my upcoming quadrilateral CLL (tibias+femurs) and perhaps running a fundraiser to help cover some of the costs ($180K is a lot!) - something like a GoFundMe campaign (like a Kickstarter for personal causes). I've spent a lot of time learning about CLL and I'd update backers with pre-op tips, how the recovery is going, what exercises have helped, supplements I took, useful gadgets to aid recovery, ways to combat pain (I have some novel ideas there) etc. What do others think about this? I could be pseudonymous but still show my face, or go fully public and use my real name.

I'm an entrepreneur and software engineer living in the San Francisco Bay Area, where there are many transumanists - people who believe in the use of technology to improve human life. (We are all actually transhumanists, whether we are aware of it or not - do you wear an external thermoregulatory device or an optics enhancement one? You're a transhumanist. It's only a matter of degree between clothes and glasses to CLL.)

All my friends and acquaintances already know and 95% have been supportive. They've asked questions, offered to visit, help with stuff, places to stay etc. People I've told about it at gatherings and networking events around tech, life extension, entrepreneurship or the like have been intrigued and supportive. The 5% who haven't been supportive wouldn't be good friends anyway, right?

Telling a larger audience WILL polarize people, but as our friend Dr. Seuss says, "those who matter don't mind, and those who mind don't matter". I don't care if I do an AMA and some randoms on reddit are anti-CLL. If I do a fundraiser, haters gonna hate but they won't steal my funds. If anything, controversial publicity is good publicity.

Employment-wise, HIPAA protects you from having to tell your boss, but I told my boss anyway and he was supportive too. Future employers might or might not Google me and find anything CLL related - I have a significant online presence related to my open source software work that will probably overshadow CLL.

Re. women - my partner has been super supportive and will live with me during the recovery period. Generally, you'll want to tell your (prospective) gf/wife at some point anyway. If she has a problem with that - huge red flag. For one-night stands, girls won't Google you (if they even learn your last name). So not a reason either.

I've asked about this in another thread and got only one reply.

Arguments against going public - 1.

Quote from: myloginacct on February 08, 2018, 04:09:02 PM

I agree with everything you've said, fivefive, but the thing about being public about CLL is how public you intend to make it, and how famous you are. If it's just to the people in your life, I don't see a problem. Like you said, everyone who can't at least show empathy can beat it. The main problem is that [...] sadly, there are a bunch of money hungry, bad doctors willing to perform CLL. If a famous person went public with CLL, there's bound to be a bunch of youngsters butchering themselves with doctors like those.

Fair point. I'm somewhat "famous" but not a lot. I've been in the startup world for a while and on TV a bit but I don't have a large online following or anything. To prevent others from getting scammed or butchered, I can emphasize how crucial it is to do your research, and to wait to get the necessary funds to do CLL well, with the safest doctors you can afford.

Also, by the time those interested in CLL will be doing it, the very promising PRECICE 3 / STRYDE will be available, which should considerably improve recovery and maybe even lower the costs, and allow faster return to work, so the loss of income will be less of a factor.

Arguments against going public - 2.

Another counter-argument - that patients don't want to post negative things about their recovery for fear of retaliation from the doctor. To prevent this, I plan to tell my doctor I'm going public. That should get him to be extra attentive

I'd be curious to learn about other counter-arguments.

I want to be taller for myself - to better my ability to relate with people. To see them at eye level. To increase my confidence. To not feel like I have to compensate for something I had no control over when I was born. Because now, I do have control.

Becoming taller gives you extra confidence, for sure. But do you want real confidence, beyond the physical aspect of CLL? Own it. Tell people you took matters into your own hands, 𝒕𝒐𝒍𝒅 𝒚𝒐𝒖𝒓 𝒈𝒆𝒏𝒆𝒕𝒊𝒄𝒔 𝒕𝒐 𝒇𝒖𝒄𝒌 𝒐𝒇𝒇, and worked hard to become a taller person. Confidence comes from accomplishments. Every challenge we face, successful or not, is building our confidence. We only get one life. This is it. This is you.

Those who can't understand are showing a lack of empathy, and can sod off. One's drive to get the money and the courage to go through with this major surgery, show much more about their character than how long their legs happened to be in the genetic lottery.

I'm being anonymous for now by default, and because everyone here has been anonymous. However, it's not clear to me why I wouldn't want to go public. Give me some good reasons against being public about CLL.

myloginacct · « **Reply #1 on:** February 10, 2018, 01:36:33 AM »

Hard topic. There are good pros and cons to going public about it. I listed the main, big con that I could think of.

backrandom · « **Reply #2 on:** February 10, 2018, 01:49:48 AM »

More reasons... I think you won't get any money from that crowfunding platform. Why in hell would people give money to heal the narcissistic wound of a guy who wants to be taller for aesthetic reasons, instead of supporting other kind of more necessary biomedical research? If those transumanists you talk about are interested in LL, they will get LL themselves, will ask LL surgeons for detailed information, or will lurk the forums, where many people offer their first-hand experience for free. There are no reasons to give money to a random guy with a narcissistic wound. So, why would you expose yourself to get nothing in return?

You won't get sympathy from random people in the internet either. Apart from poor, most anonymous users of the web are full of hate and misery. In this forum people support each other because we suffer from the same height dysphoria, but outside, in the real world, people are highly critical about LL. It isn't only haters who are gonna hate. It's almost everybody who will criticize you. Are you prepared to be under such public scrutiny for the rest of your life with your name all over the web? You try to rationalize about your possible future employers or girlfriends, but this surgery bears a strong stigma. You don't know if the same people who support you now will change their mind in the future, when they don't need or love you anymore.

myloginacct · « **Reply #3 on:** February 10, 2018, 02:24:45 AM »

Quote from: backrandom on February 10, 2018, 01:49:48 AM

More reasons... I think you won't get any money from that crowfunding platform. Why in hell would people give money to heal the narcissistic wound of a guy who wants to be taller for aesthetic reasons, instead of supporting other kind of more necessary biomedical research? If those transumanists you talk about are interested in LL, they will get LL themselves, will ask LL surgeons for detailed information, or will lurk the forums, where many people offer their first-hand experience for free. There are no reasons to give money to a random guy with a narcissistic wound. So, why would you expose yourself to get nothing in return?

I don't think you can reduce it to a "narcissistic wound" when we are talking about a man who's 5'5, specially since he's in the US. If he was something like 5'9, then, yeah, exposing himself publicly at a height like that, just because he wants more, wouldn't be seen in good eyes. However, you are right that this is a point for reflection. We have read the studies and understand the difficulties short people, specially men, have to go through. However, this is our little bubble. If society, in general, would see a 5'5 guy getting CLL the same way they'd see a 5'10 guy? I wouldn't be able to answer that. I don't think it would, but it's something to reflect on.

EDIT: Also, yeah, I think Kickstarter wouldn't be the site for it, but he mentioned crowdfunding more generally. I also agree he wouldn't get much, if any, money out of it.

Quote

Are you prepared to be under such public scrutiny for the rest of your life with your name all over the web? You try to rationalize about your possible future employers or girlfriends, but this surgery bears a strong stigma. You don't know if the same people who support you now will change their mind in the future, when they don't need or love you anymore.

Very fair points that fivefive has to consider. The culture in Silicon Valley seems like it'd be prone to accept transhumanistic ideas and ideals, but don't fully rely on that.

I also think the spotlight on him would die eventually, but every time someone googled his name, they'd most likely find about this adventure, whether it went well or badly. Would he be okay with that, years down the road?

myloginacct · « **Reply #4 on:** February 10, 2018, 02:39:12 AM »

Also, bear in mind stories like these:

https://www.nbcsandiego.com/news/local/Limb-Lengthening-Surgery-Creates-Controversy-269145341.html

Every time achondroplastic or other people with forms of dwarfism undergo CLL publicly, they get criticized by their related associations in America for not accepting/embracing themselves and making their condition be seen as a problem.

myloginacct · « **Reply #5 on:** February 10, 2018, 03:07:09 AM »

On the opposite end, we have a story like this:

http://www.bbc.com/news/world-europe-38948674

http://www.pinknews.co.uk/2017/02/12/this-drag-queen-helped-appoint-germanys-new-anti-trump-president

These are one of the few English language sources I could find. Olivia Jones is a German drag queen who underwent limb shortening (from 6'7 to 6'5) because she felt too tall. Both of the links mention the LS. I wouldn't be able to tell you how it was received, but I didn't see anything negative in Google searches. We'd need to rely on German speakers to tell us. I'd like to believe most Germans saw it as a personal choice for her and didn't judge her for it.

Honore · « **Reply #6 on:** February 10, 2018, 03:22:59 AM »

Dear 55,

I actually had/have a similar plan.. I want to make a documentary about my LL. I am also looking for funds and I also would love to use the "trans human" angle as the main theme... something like a bucket list extreme.. so maybe we can join efforts...

On the exposure risks: I am absolutely convinced that it is a bad idea, the world is filled with idiots.. but I also believe its a great idea.. frontiers need to be conquered..and someone has to be the first

IwannaBeTaller · « **Reply #7 on:** February 10, 2018, 12:44:57 PM »

180k is a huge amount of money, I'd imagine it to be nearly impossible to raise even a quarter of that on donations, especially since you're not extremely short. You can go public and try to raise money, I don't see anything morally wrong with it, but you might be ostracized by some people and you'll be known as the guy who was so desperate that he broke his bones, by possibly a lot of people. Could you live with that?

Also, how about doing externals on tibias first and then see if you could live with being like 5'7.5''? You'll have experienced LL and know how much pain you'd have to go through before doing another LL, and you might decide that your new height is acceptable for you. You could do external tibias for like 10% of 180k USD. Though considering you're an IT guy in the Bay Area, you might have enough money.

Zeo · « **Reply #8 on:** February 10, 2018, 01:08:06 PM »

Silicon Valley would be sympathetic to LL'ers lol. Honestly with the way things are nowadays I wouldn't doubt that people in general are more open minded. If only people getting LL would receive the same support as trans people. I've never heard of a clinic where people with low income could go get subsidized LL, but I digress.

If I felt as strong as you about being public with my LL I don't see why you wouldn't want to get some money for it, especially if you could make this documentary/vlog entertaining. It's definitely something I personally as a potential LL'er would want to watch. But personally I don't think that you would get more than a few bucks. Here's why:

In order to get this gofundme really popular and get people donating, people need to share it. I strongly doubt that the people on these forums are going to start posting this on their public facebook. Meaning you would have to do all of this entirely yourself. Most people don't know how to do mass marketing type stuff and most don't have the motivation to learn. Maybe you're the exception or maybe not, or maybe the time has just come for this idea and it'll take off. I guess we'll find out which one it'll be.

Donations: People aren't nearly as sympathetic to people getting LL as they are with other surgeries so idk if the general population would donate much. And people here are busy saving for their own surgeries so I doubt they'll be money to spare, also it's in the best interest in the majority of the LL community that LL isn't something that everyone knows about. Not everyone is as open minded as the people in the bay.

But I definitely agree with Honore, it's a dumb idea but frontiers need to be conquered and someone has to be first. Just like how it's a dumb idea to walk on a tightrope across two skyscapers but if you make it to the other end, it would be glorious.

backrandom · « **Reply #9 on:** February 10, 2018, 08:04:45 PM »

Frontiers to be conquered? What for? Get the surgery and shut up. You won't get any money. The only thing you'll get is public shame on you.

Android · « **Reply #10 on:** February 10, 2018, 11:43:30 PM »

I've helped an acquaintance with a serious disease through crowdfunding, and even that was a struggle. Only those who knew them donated. Strangers will give out sympathy pretty easily, but not many will open their wallets.

This will prove especially difficult since it's cosmetic surgery. It'll be difficult to gather sympathy, it'd probably be a challenge even if you were a dwarf. Many tall people deny that there's any height discrimination; they simply don't believe it since that's the only life they've ever lived. Privilege is invisible from your own singular perspective, so you might just end up getting backlash. Since you're from the San Francisco Bay Area, they may also just tell you to save for it yourself.

The only analogous anecdote I can think of are crowdfunding sites for breast augmentation. Alas, men are more willing to donate for such things since it's sxxualized, and the cost is much lower so it's easier to meet a goal.

If you want to save some money, maybe it's better to coordinate an effort with a doctor who wants to promote their practice instead. You could offer yourself up as the perfect patient testimonial, with video footage and interviews for years down the road. But I wouldn't hold your breath that it'd be anything that substantial, since some patients are willing to talk on camera for free if they've truly had a good experience. If you've got any unfair advantages like social clout or technology to get that doctor on the map, this would be the time to sell them on your ideas.

How about starting your own blog and a channel on YouTube, eventually writing a book about your experience in hopes of getting your investment back? People will gladly pay to solve their personal problems, but rarely will they give money out of pure altruism.

That being said, these are my opinions, so feel free to try what your heart desires. You can probably beat Kevin!

myloginacct · « **Reply #11 on:** February 11, 2018, 12:44:24 AM »

Yes, basically forget crowdfunding, but consider other ideas if you really don't mind the criticism you'll get from coming out with your CLL.

You could bring attention to heightism in society, possibly more investment into research/technology for CLL, maybe academic talk and discussion about the morality and psychosocial implications of surgery like this (which will surely be a factor much further down the line for any subsidizing of CLL for very short people), and maybe the start of the acceptance for all future height-increasing surgery people will surely go through in the coming millennia - all depending on how famous you are and how big the story becomes, of course. This is all for someone Tom Cruise levels of famous. It could just become a minor trivia in your Wikipedia page and not anything else - if you ever have one created for you, that is.

My main worry is still a bunch of stupid young people butchering themselves over their height dysphoria, and a false belief that current CLL is an uncontroversial and safe procedure. This is still not an easy procedure. As much as the pros seem exciting, this is a huge con.

I kinda agree with everyone else that this is most likely a bad decision for you, and the implication of more people trying to get CLL out of it really worries me. So, for being better safe than sorry, I'd suggest just being mildly public about it. Tell your coworkers, write a book, maybe see if you can give some talks about your decision to psychology and psychiatry students, not more.

Quote

You can probably beat Kevin!

That's so sad, in so many ways...

backrandom · « **Reply #12 on:** February 11, 2018, 02:21:25 AM »

Quote from: myloginacct on February 11, 2018, 12:44:24 AM

My main worry is still a bunch of stupid young people butchering themselves over their height dysphoria, and a false belief that current CLL is an uncontroversial and safe procedure. This is still not an easy procedure. As much as the pros seem exciting, this is a huge con.

I kinda agree with everyone else that this is most likely a bad decision for you, and the implication of more people trying to get CLL out of it really worries me. So, for being better safe than sorry, I'd suggest just being mildly public about it. Tell your coworkers, write a book, maybe see if you can give some talks about your decision to psychology and psychiatry students, not more.

+100

backrandom · « **Reply #13 on:** February 11, 2018, 02:24:47 AM »

Quote from: myloginacct on February 11, 2018, 12:44:24 AM

That's so sad, in so many ways...

True.

Limb Lengthening Forum

Author Topic: Pros and cons to publicly fundraising my CLL (Read 7212 times)

OverrideYourGenetics

Pros and cons to publicly fundraising my CLL

myloginacct

Re: Pros and cons to publicly fundraising my CLL

backrandom

Re: Pros and cons to publicly fundraising my CLL

myloginacct

Re: Pros and cons to publicly fundraising my CLL

myloginacct

Re: Pros and cons to publicly fundraising my CLL

myloginacct

Re: Pros and cons to publicly fundraising my CLL

Honore

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IwannaBeTaller

Re: Pros and cons to publicly fundraising my CLL

Zeo

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backrandom

Re: Pros and cons to publicly fundraising my CLL

Android

Re: Pros and cons to publicly fundraising my CLL

myloginacct

Re: Pros and cons to publicly fundraising my CLL

backrandom

Re: Pros and cons to publicly fundraising my CLL

backrandom

Re: Pros and cons to publicly fundraising my CLL