It’s really hard to know where to begin. Do I begin with how I wanted to save the world by going into IT and working hard to the point where I was an IT leader. A network admin for some company with clout. A thought leader and engineer.
Maybe I should start where the problems started – trying to be the foundation for my friends to build on, to anchor them in a good house so that they could get their lives together while working in low-paying positions with my help. When my friends ended up leaving me high and dry and starting the stress that would one day culminate in the first flare up of my condition.
Maybe I should start in with my last year employed, where I was overworked and underpaid – a condition that many people still go through. However, it created the perfect storm of stress with trying to take care of my family at the same time that it started what I go through every day now.
So I guess I’ll start with that. About three years ago, I started developing chronic pain, fatigue, and memory issues. When I was really stressed, I would shake violently in bursts. The worst part, though, was the growing frequency of spacing out without control. This was especially problematic, as I was working in a high-pressure call center and these episodes caused me to forget details, answer the phone incorrectly, or any number of other serious problems with getting my job done.
In December of 2010, I lost that job. I also started having serious seizures that caused me to throw myself at the ground or into walls without control. I would throw things I was holding without warning. I would wake up shivering and shaking violently for twenty minutes, nearly every day. My joints had always been bad for one reason or another but as my body started to shake every day, they just got worse. Every day was a pain war between my upper back, my lower back, and my legs. My muscles would tighten and loosen constantly and without any kind of rhyme or reason, and I started to be able to crack my knuckles on command. Constantly, if I wanted. At first, I thought I could live with it, though. I’ve never had medical insurance (as I come from a family that struggled to stay in the lower middle class) so I’ve always dealt with my health problems the old fashioned way – live with it, work through the pain, look for simple cures on the internet and make sure they work.
That all changed on the tenth of December, though, when I lost consciousness while driving and went through a freeway sign and the side of someone’s car before I could pull the wheel back and gain control of myself again. I had started making a left turn onto the freeway and my body locked up, my mind wend blank, and I just kept making the left turn. That’s when the reality of what had started happening to me hit me full force – I wasn’t able to be normal anymore. I wasn’t able to drive, I wasn’t able to work, I wasn’t able to live like everyone else anymore.
After losing my job, it took me three months to get unemployment benefits. In that time, I lost the last house I lived in – a small apartment in Orange where I helped take care of my mom and my youngest brother. For the next year, we would live between motel rooms and my mom’s van while she did what work she could and I helped keep everyone fed and the car running on my unemployment. After several months of sleeping in a van, though, some of my old friends started lending me a place to stay when I could and I started couch surfing. That’s where I’ve been ever since – floating between couches, occasionally renting a room here and there when I could for privacy and much needed rest. This worked fine until I lost my unemployment benefits and started the application for disability. An application still in process, I might add, since I don’t have medical records of my problems (even though they’re plain to see).
However, the real important thing here is I’ve been spending the last year without any income, couch surfing, and dealing with all of those problems I listed before. I’ve learned how to manage them and, since stress management is my only real job now, I’ve gotten a lot better at controlling the sudden outbursts of shaking, pain,and dementia. It is all much harder without a home, though. Without a place to call my own, a bed to sleep in, and the space to store the few belongings I have left. I thought it’d be a long time before I’d see a home again, at least until I finally got my Social Security decision ironed out and worked through the HUD application.
That changed recently. My partner, the amazing woman that she is, offered to pay my rent when some very close friends of mine offered me a room in their house. It’s a modest room, but a good room. It’s a place where I feel safe and where people are looking out for me. The rent isn’t really that high and everything was going to work out. So we pulled together the first month when it was needed, I dropped my stuff off, and I lived in my own room for the first time in two and a half years. For three days, I was the happiest man alive.
Until the landlord talked to me, grew nervous at my situation and wanted financial records. Wanted me to have provable income, despite my girlfriend being the one paying the bills as it were. He didn’t want her, though. He said he couldn’t take her as a guarantor no matter how good her job is. My tenant score is too low because of my eviction from my job loss and disability, He wanted a deposit.
An outrageous deposit.
He wants the rent on the whole house. From just me. We didn’t have that kind of money laying around – if we did, I wouldn’t have been homeless this whole time. I am, however, too stubborn to take a challenge lying down. Too stubborn to be given a chance at stability and a home again without fighting for it every way I could. At the suggestion of a friend, I started a campaign to raise the deposit, to keep me from being homeless, and to get what I need together for the deposit. It’s not a lot in the grand scheme of things, but it’s meant a lot to me so far. Since I started the campaign last Friday, we’ve already raised nearly $800.
Now I’m wondering if you, dear readers, can help me get a little closer to the end. Get a little closer to having a home again, being able to put my life back together, and being able to finally deal with how much I’ve changed thanks to my disability. To figure out who and what I am now that I can’t be who I was when this started. And all it takes is a little bit of help – a few dollars in the pot, a shared link on twitter, a post on your blog. If there’s one thing this weekend has taught me, it’s that sharing and reaching out to people is what makes a difference. It’s reminding people that it doesn’t need to be a lot of help to be a big help, and that there is a real life here, a life that appreciates everything that’s done for them. A life that, without your help now, could be a hell of a lot harder.
So please, consider donating if you can, whether it be your time or your digital space if you have no money to spare. And thank you, from the bottom of my heart.
Please forgive me if I am out of line. I say this respectfully. Being sceptical by nature and hearing from countless stories of people who have been ripped-off on the Internet, I just can't wholeheartedly believe this story. I am not saying it's not true, I just have serious doubts.
Also, I have already contributed to this particular blog before (http://www.indiegogo.com/projects/young-sick-and-invisible-a-skeptic-s-journey-with-chronic-illness?c=pledges), something about a book that was being written. My anonymous donation was the second or third highest, I left an e-mail address and, yet, apart from the automated reply from Idiegogo, I have never received any sort of personal acknowledgement. I was a bit disappointed.
Maybe Indiegogo does not forward the info you enter. Who knows? This was very unique, all other authors of blogs to which I have contributed to, have taken the time to personally thank me. One even sent me a handwritten note in the mail.
I emailed everyone who sent a donation months ago. I did however have a few bounce back to me as “not accepting emails”.
If you did not receive an email from me, I would ask that you email me at email@example.com so that I can verify that the information I received was correct. I apologize if you felt undervalued. I appreciate and am grateful for every donation that has been received. The thank you email included an update on the book as well.
As to this particular story. I know the person in question personally. We have met in person, and we frequently communicate via facebook. More to the point however, his story can be verified by Heina of Skepchick as well.
Young, Sick, and Invisible is still in the works and is as you said, being written. It is the sad state of the society we live win, that financial problems are a common occurrence for people with Invisible disabilities, which is part why I am working on raising awareness with this book.
In the future however, if you suspect that something nefarious is going on, or if you want to make subtle accusations, I would prefer if you directed them to me either by email or as a pm on our facebook page. I do not take accusations lightly, and am also very careful as to forwarding any fundraising requests as I am very aware of internet scams.
Please don't take this the wrong way. You say that you have e-mailed all of your contributors. Was this a group e-mail? Group e-mails or automated replies very often get discarded by e-mail clients as spam? Have you considered writing a personal e-mail to at least those who have contributed large amounts? According to your donor's list, among the disclosed amounts, mine is the second highest. This is money I had saved-up for myself that I gave away to you, a complete stranger.
The expectation here comes from what was written on your Indiegogo fund-raising page:
“For $100 or more, you will receive my thanks by phone, skype, or video, a blog shout out, a bookmark, a digital copy and a signed hard copy of the book. You will also receive an acknowledgement in the book itself.”
All I received was some automated acknowledgement, not from you, from the fund-raising company and even that set-up false expectations:
“We want to let you know that the funding campaign, Young, Sick and Invisible: A Skeptic's Journey With Chronic Illness, …. Ania Bula should be in touch shortly with an update on the campaign and to fulfill any perks you are owed….”
No Ania Bula has contacted me. There were no shout-outs from your blog. Even your reply here which could have been a great opportunity to correct a mishap does not contain the two simple words “Thank You”.
Your pledge drive over, and immediately after, another request for money followed (see http://www.aniasworkinprogress.com/2013/03/help-good-cause.html)
Contrast that with the other two blogs I have donated to. One put-up a public post, sent me a personal e-mail thanking me. And the second, the mother of Rehtaeh Parsons sent me a handwritten note in the mail. Unlike your Indiegogo page, they made no promises before any donation.
I am not accusing you or the guest-poster of any sort of fraud. Any normal skeptic would have questions when being prompted for money. And would want to feel safe asking them publicly. Not questioning it is what makes fraud possible. Just like you, I don't believe everything I read. (See http://www.cbc.ca/news/health/story/2012/12/21/edmonton-red-deer-cancer-fraud.html) That is not to say that this person is lying.
And there are a lot of questions to ask here. I'd like to add that I have been respectful to you, the money I gave you for your book was hard-earned.
I sent out an email to everyone asking what name they preferred be used on the blog and if there is a link they would like me to include to their own work. I then sent another email to all the big donors asking for the best method to contact them, including google hangout, skype, phone call, and youtube video among the options.
I am very grateful for your donation, as I am for everyone's donation. As I mentioned however, sometimes emails don't get through. I have received several responses from people without problem.
Moreover, my email is publicly available to anyone both on this blog and in multiple other places. If you were concerned, it would have been more appropriate to email me directly rather than making accusations on the blog. Not only do I continue to be unable to contact you since you have not provided me with an email and so nothing can be solved, but your post made a very public accusation to which I had to respond. Doing so in this way was anything but respectful. Moreover, doing so with as “anonymous” only continues to prevent me from being able to offer any sort of solution such as sending you the email that I sent to everyone. Once again, if you did not receive the email, please send me an email at firstname.lastname@example.org so that I can respond to you directly and so that my future emails can go directly to your inbox and not be caught by spam. Out of respect for my donator's privacy, and because I know that several of them are forced to use different names on their payment info than the one they use publicly, I have made it a point to contact everyone and get the best information to use.
I don't think you get it. Let's do this and we will call it a day. It's all my fault. Everything you did here and how you handled this situation was perfect. I should be chasing a simple Thank-you. I should be chasing a follow-up to how the book is going. I should not be questioning any request for money because that subtly implies fraud. I should be giving blindly. You are 100% correct!
How about you asking me how you can correct the situation?
“I then sent another email to all the big donors asking for the best method to contact them, including google hangout, skype, phone call, and youtube video among the options.”
-Do you understand that group e-mails will be discarded as spam by most e-mail clients? Is it too much to ask to write to them individually? Does Indiegog give you a list of all the individual e-mail contributors?
“I am very grateful for your donation, as I am for everyone's donation. As I mentioned however, sometimes emails don't get through. I have received several responses from people without problem.”
-I am not sure if this is a belated thank-you even if it does not contain the words “Thank-You”. This could have been posted publicly on your blog. It was not!
“…, but your post made a very public accusation to which I had to respond.”
Do you understand that there is a crucial distinction between not believing a story and making accusations of fraud?
On the fundraising page http://www.indiegogo.com/projects/young-sick-and-invisible-a-skeptic-s-journey-with-chronic-illness, there was a promise expected to be in April for all contributors:
“You will have my sincere thanks, and a shout out on my blog. Estimated delivery: April 2013”
We are mid-July,this has not happened.
It should also be noted that while that same page, as well as your blog, publicly thanks the people who helped with the promotion of your fundraiser (http://www.aniasworkinprogress.com/2013/03/book-update.html), there is no such gesture there to all the donors.
The same post is signed “More updates coming soon.” It has been more than 4 months and there has been no update on your blog. A very, very brief update yesterday on your fundraising page.
Perception is everything.