Special Needs Trust

This is a difficult post to write. I had been sitting on it for several months, trying to decide best how to convey the emotions I am feeling.

A few weeks ago, I was asked by a stranger if I had been in a car wreck, as I was wearing my neck brace. I replied that I was in a train wreck, and I was distracted by another person before I could finish my thought. He later asked where the train wreck took place, and I apologized for misleading him, and said I should be so lucky.

When I was first diagnosed with ALS last spring, I was overcome with grief, and spent many hours over the next month sobbing and screaming in rage. Eventually, life took over again, and I set all that aside for a while. After all, I still had two young daughters to help raise.

My Family

Most of my initial fears have come to pass. I remember the initial struggles lifting Sabina, just a few short months after her birth, before we even knew that there was anything close to serious going on. By January of last year, I was not even able to pick her up at all. Fortunately, she began crawling soon after, and had figured out how to crawl into my lap when she wanted me to hold her. I am so happy now when she climbs up on my lap to have me read a story to her or to watch a YouTube video.

And Ashlin has been very understanding and helpful through this whole process. As I have been unable to give hugs for several months, she came up with a method where she pulls my arms behind her back. I just about cried the first time that she did that. The last couple of months have been difficult, as I am no longer able to turn the pages of books when I read to her. At first, she went through a period when she didn’t want me to read to her at all. But then she spoke with Gwen about her feelings about it, and now she turns the pages for me.

Sadly, however, I know that the worst is yet to come. I will be visiting with the ALS clinic soon in order to get a power wheelchair. At the same time, we need to expand our bathroom to accommodate it, and put in a ramp in the back. And yet, that transition does not feel particularly big for me. Much more difficult has been the fact that I need artificial ventilation in order to breathe at night already. Or that I am unable to play frisbee anymore.

Aaron Welch with Advomatic recently set up a Special Needs Trust in my name. This unique trust allows us to use funds contributed by outside sources (we are legally not allowed to contribute to it), while protecting my eligibility to receive care-giving assistance through the state. The funds can be used to support my needs beyond what I will eventually receive from Medicare/Medicaid.

Basically, at some point down the road, I will be on disability and eligible for Medicare. The good news is that this happens almost automatically for a patient with ALS, due to some lobbying in the last couple of decades. As my needs increase, however, I will need more care and will need to become eligible for an attendant care program in PA, for which the income and asset allowance is almost nothing.

If and when I choose artificial, invasive ventilation, I will require 24 hour care. At that point, I would also need to be Medicaid eligible. This is where things get extremely challenging financially. For example, with attendant care / Medicaid, not only do I need to be basically destitute, but the state looks back over 5 years, and if they see that I have given any money to anyone in that time frame, they assume that I am trying to scam them, and dock the time, adding several months or more to the time before I would be eligible.

Based solely on the odds, there is a 50% chance that I will die in 1 to 2 years, although it’s a little more complicated than that. There are two predominant flavors of ALS: bulbar onset (the brainstem) and limb onset. Mine is the limb, which makes it only slightly more likely that I may live for another 3 or 4 years instead.

I want to point out that I am doing everything humanly possible to beat those odds. When they talk about the life expectancy of ALS patients, however, they are really talking about the "survivability", which is the point when a patient would require invasive ventilation to survive. Most of the 10% who will go on to live a decade or more have reached this point and are locked-in as well, trapped in their completely paralyzed bodies.

We have done what we can to protect what assets we do have. We have been consulting with an attorney as the information is very complex and we want to protect the future for our children as best as we can. We know that major purchases are down the road, such as medical and communications equipment, home modifications, a wheelchair, and an accessible van, all of which will be in the tens of thousands of dollars. The cost to support a patient with ALS in the later stages can run easily up to $100,000 a year or more. The funds in the Trust can help support me while I am alive. After I die, the funds remaining in the Trust will go to my wife, Gwen, to help raise our children.

For those who wish to contribute, we have set up a bank account for the Trust. We have set up a PayPal account as an option to contribute. For a one time donation, click on the Donate button. To make a recurring monthly donation, you can select the amount you wish and click Subscribe. Alternatively, we can accept checks for the Trust; contact me for more information if interested in sending a check.

One Time Donation


Monthly Recurring Donation

I am angry at this stupid disease. I know from my time with Elisabeth Kubler-Ross so many years ago that this is a natural part of the grieving process, and that eventually I will enter the acceptance phase. I even look forward to that.

But my daughters, Ashlin (8 years old) and Sabina (2 years old), will not have the benefit of the acceptance of my death when it happens. I am being robbed of my time with them, of watching them grow up. It is hard enough to know that I will most likely not be around to watch Ashlin graduate. To know that Sabina will most likely not have any more than a fleeting image of her father from early memories makes me cry.

To add insult to the injury, I am quickly losing my ability to participate in their lives, even now, becoming simply a spectator. What I would give to be able to pick up a frisbee and toss it to my daughters.

I want to thank everyone for all your ongoing support and care. This slow-moving train wreck is more than any family should have to endure.

Demo of Drupal's Media: YouTube module

The following transcript is for the video at http://www.youtube.com/watch?v=XfPKKisE88w :

Hello, my name is Aaron Winborn. I am a developer for Advomatic, the author of Drupal Multimedia, and a contributor and a co-maintainer of several Drupal modules, including the Media suite of modules.

Today, I will demonstrate a new feature of the Media: YouTube module: browsing and searching videos directly from YouTube, in the media browser itself. So first, let’s set up our environment.

We are assuming that you already know how to install Drupal. If not, you can find information at Drupal.org.

So right now we are at the modules administration page. We are interested in the modules under the Media package. You will need to install and enable the File Entity module (version 7.x-2.x), and the same version of the Media module.

We will not enable the included Media Field module; it is there for legacy purposes, and has been deprecated in favor of core’s File Field.

The Media Internet Sources module, included with the Media module, is a dependency of the Media: YouTube module, so we will enable that.

Next will be the Media: YouTube module, also version 7.x-2.x.

Finally, we will install the WYSIWYG module.

Let’s start by configuring WYSIWYG. We do that by going to Configuration > Content Authoring > WYSIWYG profiles. Note that I have also installed and enabled the Admin Menu module and the Admin Menu Toolbar module, which gives us the fancy drop-down menus for administration that you see here.

Now in order to use WYSIWYG, you need to have also installed a third-party WYSIWYG library, such as CKEditor or TinyMCE. You need to follow the instructions with the WYSIWYG module to install that, although it is quite simple actually. You just download and unpack the file into the sites/all/libraries folder. You can see that I am using CKEditor here.

The WYSIWYG module allows us to set up profiles for the various text formats on our site; in this demo, we will edit the Filtered HTML format.

Open up the buttons and plug-ins field set next. Then check the Media Browser check box. That will add the media browser button to our WYSIWYG editor, which we will see soon.

In order to use that however, we need to configure the filter in question. In fact, I believe that if we do not do this step 1st, we will get an error message, complete with a link to the format configuration page.

On this page, we need to check the box next to “Convert Media tags to markup”. That is the answer to the number 1 support question that we get in the Media queue, which is, “Why is there bracketed goobly gook instead of my images?”

So now, as we will see, everything should be working now. So let’s test it.

Here on the create article page, we see a fancy button on the body text area! Let’s click it.

And there we go.

These are thumbnails being pulled directly from YouTube. How about that?

And there is even a ghetto pager, or at least previous/next links.

And you can also search YouTube directly from our browser.

So now we will select a video and submit it. Add a title and save the node. And there we go.

And that’s it really. Well, almost.

There are some more settings, specifically here to control which tabs show up for WYSIWYG. Note that at the time of this demonstration, you will not have this functionality unless you install the patch over at node 1434118.

To complete the demo, we will also do the same for fields. Let’s add a field to hold YouTube videos. We will call it Media, and it will be a file field with a Media file selector widget.

Here, let’s reorder it as well for the demo.

We leave everything at their default settings.

Hold on, I forgot that we need to allow the YouTube URI scheme. And the video file type.

So now we will create a new article, and select the media.

And here we have all the tabs available to our browser, including the new and improved YouTube tab.

And also, let us look at another new feature of the media module: My files!

This has been a long-awaited feature for the Media module as well.

Now here comes the 2nd most asked question in the support queue: “How come there is a link to my file, rather than the file itself?”

Let’s just fix that now.

Now we are in the file type administration page, where we can configure the display for each of our file types. Note that we can also add fields to our files, although we are not going to do that in this demo.

We will jump to the video display...

No, we want to make sure that our large formatter is set up properly for YouTube. And it is, so let’s set up that as the formatter for our Media file field.

And there it is, as a generic file, which is simply a link to the file stream itself. We will change that to rendered file. And then we set the view mode to large.

While we are in there, we can do the same for our teasers. We will just set that to the preview view mode, which by default will display a thumbnail.

Whoops, I forgot to save it. Let’s just do that again.

And there is the video.

And there is the thumbnail.

Well done!

Spammer with a Heart of Gold

I received a most heart warming comment from a spammer the other day. To understand why it has affected me, you might first need a little background. I have been diagnosed with Stephen Hawking’s ALS, or Lou Gehrig’s disease. Based on just that fact, and that my lab scores are dead even (and that I do not have access to Mr. Hawking’s money or universal health care) I will most likely die sometime in the next year or two.

I announced my condition to the world through my blog last August, and have had many heartfelt wishes and offerings of support.

And lots of spam.

I use Mollom to protect my blog which is powered by Drupal, and it does a fairly decent job. Still, about 50 instances of spam make it through the filters every month. I have to handpick those out, which is an increasingly difficult task, considering that I have little ability to use my hands anymore.

So this one comment stuck out, beginning as so many do, with concern for my condition, and well-intentioned advice, in this case to seek out Ayurvedic medicine. But then, the poster went on to chastise other spammers on this site, and I quote:

One more thing for some persons who comment here. Don't forget that you are humanbeing. I also come here to place my link here. But when a person is in such a condition and place his feelings here, then how the hell you are posting your links here for business purpose. I am also doing SEO. But not at the cost of humanity. It is the time to help and support him, materially or mentally. If you can't do that please don't at least post here.

It is my sincere request.

This is a good reminder that even as we continue to fight the war against spam, that our combatants are human. Like so many soldiers, they are fighting for money (for “business purpose”). They also create internal justifications for what they do (“I am also doing SEO”).

And that at least one of them has a heart of gold.

Thank you, Dillip.

(Here's a better version of the song.)

Heaven Can Wait

I had an appointment this morning with my primary care physician. I thought that the appointment was to request a new lab test. Little did I know that the appointment was really so that my doctor, who shall remain nameless, could wax philosophical on me.

For nearly fifteen minutes, I was subjected to a lecture about how I should look forward to heaven. As if that were not enough, he left me with a list of related reading material. And then he went on to tell me about how I should do something meaningful with my life, such as telling my story to the local paper, so that I can raise awareness of the devastating effects of ALS on one’s life.

Stairway To Heaven, by Tizz77

I am not defined by this disease.

I am sorry, but I don’t need to be told how to die or how to live. I feel like I have a good handle on both. And it’s not like I don’t want to hear about others’ perspectives on life and the hereafter, it just seems rude to lay it on someone without being asked first.

I used to live with Elisabeth Kubler-Ross, who wrote “On Death and Dying.” Not that he would know that of course, although he may have if he had shut his yap for more than five seconds.

To add injustice to the whole thing, he didn’t even order the lab tests that I had requested. I had wanted a Hair Element Test, to get a count of mercury in my body. He pooh-poohed that, telling me that because different labs report different numbers, that the test is meaningless. He instead ordered a Heavy Element Blood Test, which I have already had. I thought that I was prepared for a little skepticism, but after his lecture, I walked out of that office in a dazed condition.

Needless to say, I am open to recommendations for a new family doctor.

"Cookie, Cookie!"

“Cookie” has been the refrain from Sabina every morning for the past couple of weeks, thanks to Dustin and Lisa who brought us brownies the Monday before last. This is, in fact, the only word that she will say right now: Sabina will play with a word when she learns it, speaking it only about half a dozen times usually, before she decides not to say it anymore. She actually has quite a vocabulary, including such forgotten gems as “kitty”, “more”, and “sky”.

My family came up from Virginia last weekend, which was fun. It was good to see my aunt, uncle, cousins, and grandmother. I’m glad they got to see Sabina & Ashlin again in this snapshot visit.

The other night, Sabina and I danced to the Wii. She particularly enjoyed marching (to “The Ants Go Marching On”) and wiggling (to “Pop Goes the Weasel”). Ashlin did not dance, as she was cleaning the house, because Makaela was having a sleepover here that night.

Shauna painting a tree in Ashlin's room

Today, Shauna is painting a mural in Ashlin’s room, and Lisa and Wolf did prep-work. Stef is here babysitting Sabina while Gwen and Jessica are working at our old house. Stef is planning to bring Ashlin to Claire’s farm tomorrow, where they will find pastel eggs. Shades of Easter...

It was amazing watching how quickly the house was moved a couple of weeks ago. So many people working hard, and I felt like a lump, until Jane set me up directing traffic. I sometimes forget that I can still be helpful, even if I don’t have arms that work. I just wish there was something I could do to help get our Park Terrace house ready to sell. What’s been done there looks really great, and I know volunteers working over there must be getting tired and there’s still a lot that needs to be done. Gwen and I are deeply appreciative of all of you who are reaching out and helping with these tasks.

Theo is well adjusted to the new house. Since about the 3rd day actually. He prowls the neighborhood, on the lookout for moles, chipmunks, and small birds. When he is inside, both he and Mia like to sit by the front window, where they can look out.

I am doing well enough. My arms are a lot weaker, but everything else seems fine right now. Jon installed a bidet yesterday, which should give me a modicum of independence again. Which is also timely, as the agency providing in-home assistance has failed big time recently, failing to show up three times in the past two weeks.

That’s all for now. Sorry it’s been so long since an update.

To the Drupal Commuity

You may know me through my work with the Media suite of modules, and before that for my work with Embedded Media Field and Views Slideshow. You may have read my book, Drupal Multimedia, which I wrote before the birth of my second daughter, or seen me speak at a Drupal Camp or DrupalCon. You might have worked with me at a code sprint. Even if you haven’t met me, you might have seen some of my handiwork through one of the many sites I’ve helped developed over the years with Advomatic. Drupal has been a central part of my life - one of my three loves.

Earlier this year, my family and I were given some devastating news. I was diagnosed with Amyotrophic Lateral Sclerosis (ALS), more commonly known in the US as Lou Gehrig's Disease, which is a motor neuron disease that is slowly killing the motor neurons in my body. This is an incurable, terminal illness: 50% of patients diagnosed are dead within 2-3 years, and a further 20% in five years. Only 10% of patients are still alive after 10 years, and the majority of those are "locked in", like Stephen Hawking, unable to move any part of their body other than their eyes. The senses and cognitive functionality are spared. The disease is a progressively degenerative Motor Neuron Disease (MND), that eventually kills every voluntary muscle in the body, until the diaphragm collapses, which is generally when the patient dies, unless they are given a tracheostomy (and don't succumb to pneumonia).

This rare disease is sporadic, with no known cause. It's considered an "orphan disease", with an incidence rate of about 1 in 100,000. My neurologist is hopeful in my case, as it's limb onset (rather than bulbar, or brain-stem, onset), and I'm on the younger side of the bell-curve. Still, an early prognosis is impossible, as the disease progresses randomly. Right now, he said that based on my EMG, he expects to see clinical signs in my legs by next year, although he can't say if I'll be in a wheelchair by then.

Currently, I am unable to lift more than about 1-2 pounds. It's been hard on my wife, as she's doing everything I'm unable to do (vacuuming, dishes, etc.), on top of raising our children and pursuing her Masters. Our house is the opposite of accessible, with no first floor bathroom and being on a steep hill. Thus, we're in the meantime looking to buy a ranch house that we'll be able to modify.

Although I have some visible atrophy in my shoulders, wrists, and thumbs, I'm feeling on top of the world. I'm trying to front-load my life now, to ensure I'm doing what I'm able to at full capacity while I still can. I'm hopeful; I've been expecting a medical revolution this decade, and if I can hold on with my wits, I might be able to take advantage of that. Even if that doesn’t happen, from reading about and connecting with other PALS (Patients with ALS), I've learned, unsurprisingly, that the longer-lived people are those who manage to maintain a positive attitude in life.

I'm fortunate to be working with Advomatic, both because my job (Drupal!) is something I'm still able (and love) to do, and because I'm surrounded by such a supportive team. I plan to develop for as long as I'm able; I'm looking into voice recognition software for when my hands ultimately go. In a race against time, I'm also 'voice banking', recording my voice so that when I ultimately lose my voice, the computer will sound roughly like me. (Hawking's complaint is that he sounds "like a damn Yankee").

I know that many of you will want to know how to help me and my family. I know from experience that the first response is to want to make food. I appreciate that, as a gift of food directly helps to sustain a person, but we have a large, helpful community through our daughter’s school that is delivering meals once or twice a week. (Although if you’re local to us, we could use some occasional help with the yardwork...)

You can also send donations to the ALS Center at Penn State Milton S. Hershey Medical Center
(see http://pennstatehershey.org/web/neurology/patientcare/specialtyservices/als for more details).

Finally, Advomatic will likely be setting up a fund to help for when I’m unable to work any longer, and to provide a legacy for my family. Please contact Aaron Welch if you are interested in contributing to this.

Aaron Winborn

"It's only when we truly know and understand that we have a limited time on earth - and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had." - Elisabeth Kübler-Ross

Yet Another Drupal Installation Tutorial

This is a tutorial I wrote for a friend, who asked how to get started in Drupal. I figured I might as well share it, sorry if this is too basic for most of you hacks...

Hands on is the best way to learn Drupal...

There's a handbook at http://drupal.org/documentation -- there are several aspects to knowing Drupal. I would first suggest getting a site up and running so you can learn the basics.

First you'll need to set up a webserver. Unless you have a specific site you're trying to build, I would first install AMP on your desktop (this will be LAMP, MAMP, or WAMP, depending on your OS; you can find out about that with Google). That allows you to run local web sites at http://localhost/ .

Then you'll need to install Drupal. Just download it from http://drupal.org/project/drupal (currently the 7.7 version, the tar.gz or zip file). There are easier ways to do that if you're comfortable with the command line; see http://drupal.org/project/drush if you want to get overwhelmed with details. But depending on your learning style, it's probably best to start basic.

You'll need to download that into the directory designated by your AMP setup (might be /var/www/drupal, ~/Applications/MAMP/htdocs/drupal, or whatever WAMP tells you to do if you win the windows lottery; hold on, I'll look it up just in case... looks like it's c:\\wamp\www\drupal ).

If all goes well, you'll be able to go to http://localhost/drupal/ or http://localhost:8888/drupal/ (depending on your AMP installation & OS), where you'll see an Installation page.

At that point, you also need to create a database for your site. The easiest way to do this is to go to mysql from the command prompt and type

create database drupal;

However, as I recall, most AMP servers (other than Linux) don't do a good default setup, and it can be tricky to get mysql working from the terminal. So the next easier way is to navigate to http://localhost/phpMyAdmin/ or http://localhost:8888/phpMyAdmin/ and find the link to create a new database. You'll need to figure out (or figure out how to change) your default root password. It might be root, depending on your AMP.

Then you'll enter your database credentials from the installation screen, follow the other instructions, and you're off!

Did I forget anything crucial?

emfield is Dead, Long Live emfield

New plan of action:

1) Pull File Entity from Media and store in its own project page.
2) Have Embedded Media Field create a new widget for File Fields, that offers a textfield in addition to the upload button, allowing to paste URL's.
3) The update from d6 to d7 will create a new file field in place of the old, which will store the parsed URI's.

Most of this is already in place, making the process much easier than it would have been earlier.

What do you think? Is this a reasonable course of action? Am I missing something?

Announcing OSGameCon 2011

Announcing The First Annual Drupal Open Source Game Contest!

The BOF today was great! We made a couple of minor changes to the base rules. Also, nosro has volunteered to make a simplified version of the rules, so we can plug that in (and click through to the longer "fine print" explanations for more clarification).

My intent for launching this effort is to encourage us all to finish some games! There are only a very small few Drupal games out there, plus a smattering of flash games in nodes, and the potentials for using Drupal as a framework for gaming, as everyone in this group knows, is an untapped reservoir of awesomeness.

We're planning to build up & market the site & contest over the next few months, with a date of May 1 to open for submissions of "intent" by game author wannabes. Then we'll use DrupalCon London in August as a final deadline, and open it up for judging.

We'll also solicit prizes, ala the ifcomp, so that if, for example, we have 14 prizes and 23 submissions, then the top 14 authors will get to choose from the prizes in order.

Basically, once open for submissions, authors will be able to create a "secret" node on the site, where they announce their intent to create a game. During this phase, things are still hush-hush -- no one's generally allowed to talk about their projects before the August deadline. However, I think it might be useful on several levels to have at the very least a running list of authors. The arbiters will also be available to answer questions during this time, for instance, "I'm making a WarCraft clone in Drupal, will that count?" (Yes, but don't use any copyrighted info. And good luck on that one.) or "I'm going to create a flash game and stick it in a node. And I don't want to release the source. Does that count?" (No, wtf get out of here.)

At London, we'll open the contest for judging by the public. Although we're still working out the details, I think that IFComp has the best idea there: a simple 1-10 rating by people. People will be able to base their ratings on whatever they want, and are encouraged (required?) to write their reasons in the comments ("Excellent game play, great graphics," "Tight integration with core Drupal functionality," "Breakout wtf?"). Authors will need to release both a playable version of the game at this time, and a recipe of the modules & custom code. Judges are not required to examine the code if they don't want to (or don't know how to). But they are more than welcome to base some (or all) of their rating on the source.

None of this is written in stone, but I feel that this is a solid start, and imagine that anything further will just be tweaks.

So a reminder, if you're planning to write a game for this contest, make sure your public release coincides with the August deadline -- you'll be disqualified if you make the site generally available before then. (Although, please, please recruit a few beta-testers when you're getting closer. They won't be able to vote on your game, but they will do much towards making your game sweet.)

Also, discussed at the BOF, if your game is to be commercial, all parts of it MUST be freely available to judges during the judging period. (If you want to charge for level ups or whatever, that's your business, but that cannot be part of the game for the intents & purposes of this contest.) Also, you'll need to plan to write up a recipe of how you built it, which must include 100% GPL released code. (You don't need to release data, themes, or images, with a few caveats discussed in the rules.)

So w00t! Let's make some games! And make Morbus Iff proud...

(Crossposted at g.d.o.)

Media - File Styles Roadmap

This past month I've been busy getting the Styles module ready for release. This module does the heavy lifting for display of Media objects. For those that don't know yet, Media, the File Browser to the Internet, is the future of media handling for Drupal 7. It exposes the underlying streams API of Drupal core, allowing for fieldable media entities (fields on files), mixing up images and audio, local files and YouTube.

File Styles for Drupal

Basically, the Styles module allows you to select a style for display with a field (or in a View or with WYSIWYG), and the field will be displayed as determined by the predetermined criteria. For instance, as shown in the above diagram, you might set the display as 'Medium', and the actual displayed file or remote stream will be selected according to the file's mime type (as an image, a video, in an mp3 player, etc).

Read about the UI...

Syndicate content

The Society for Venturism has chosen me as the recipient of its charity for this year, to hopefully offer me cryonic preservation when the time comes. And this month, Longecity, an excellent forum for the discussion of issues related to extending the lifespan of humans, has offered up a matching grant of up to a thousand dollars to help out! So help out! Please.