Purple Day

As some of you may have seen on my social networks, today was purple day for epilepsy awareness. March 26th every year has been designated as a day to wear purple to raise awareness for epilepsy.

I went to an interview of sorts today, and I wore my purple hoodie, with my only polo shirt that has any type of purple in it. Let me say, it definitely grabbed the attention of the person I was meeting with. She not only noticed that it was purple, but also noticed that it was an Epilepsy Foundation hoodie.

I posted about this event a few times over the past week or so, and some of my friends and family decided to wear purple for me today. One friend even wrote on my Facebook that she not only wore purple, but that she also talked to 3 people about epilepsy and about me... That's awesome.

These gestures may seem small - Wear something purple, say a few things to some people about epilepsy - but it makes a HUGE difference. And to those of you who helped support me and my cause today, you have no idea what it means to me. I obviously can only do so much by myself, and every extra person is a great help.

For anyone who may have shown your support that I didn't know about, thank you as well. I don't need to know that you showed your support, I appreciate the effort regardless. I hope that you were able to at least mention to someone why you were wearing purple, but if not that's fine too.

I hope that everyone who is reading this has learned something about epilepsy from me at some point, and/or have taught others about epilepsy. If anyone ever wants information of any sort about epilepsy, feel free to ask. I'm always glad to spread knowledge.

The Interview

Some of you may have seen on my social networks that I went to the gym Friday. I went to the gym for a few reason:

1. I go to the gym at the college that I attended, which is about 20 minutes away from my house. I got the membership there because I get an alumni discount, and it was about 3 minutes away from work before I got laid off. (Unfortunately, I renewed my membership 2 days prior to being laid off.)
2. I was in the area, because I had an interview about 5-10 minutes away from campus.
3. The interview left a VERY sour taste in my mouth.

I was EXTREMELY upset when I left that interview. Normally, if I leave an interview upset it's because I messed up (or I think in my mind that I messed up.) There was something that I said or did that I realized later was a bad choice, and I think that it had a negative effect on my interview. This was not this case this time.

Truly, I went into this interview not expecting much. After talking on the phone, it didn't seem like the job was a good fit, but it was my first scheduled interview since getting laid off so I figured I'd go anyway. Who knows, maybe I get a different vibe from an interview than I do from a phone conversation. 

I did get a different vibe, but my impression of the individual who interviewed me (and called me) was actually made worse, which I didn't think was possible.

As I said, I knew this wasn't an interview that I thought would go well. It was for an IT job - desktop support position - which is basically what I've been doing for the past 10 years or so, so that part was fine. The bad part came in when the person told me that they have one IT person, and this person works part time. This person was not going to be around anymore, so they wanted me to take his/her spot and work half-time as an IT person and half-time as a front desk type of person. Not really what I want to do, but I kinda need something right now.

So I get to the interview. First of all, this guy said about 20 times in the interview that he could not believe that my former company had 3 people in IT for the amount of employees they have. "We have one guy part time, and 50 employees, I don't see why they needed 3 people." Literally, I heard almost those exact words at least 10 times in less than an hour.

Then he starts asking me about the programming background that I have on my resume, to which I respond "it's a hobby of mine that I do on the side" and explain to him some of my programs.

so he says "how can this be of use to us?"

"Well, I do a lot of scripting as well, so I could possibly automate some of the repetitive tasks that are done by writing a script to do the task for you."

"Well how do I know that you aren't going to leave us for some start-up company, and become the next Zuckerberg?"

...now I'm kind of upset, but remaining calm...

I'm not quite sure how I worded it, but I explained to him that although I have skills in programming, my skills are not quite good enough for most corporate uses, and that programming isn't really what I want to do all day.

So now, after already feeling like he's trying to make my skills sound useless, and make it sound like my workload is overestimated, he decides to take me on an office tour. Step one on the office tour, the office next to his - where he successfully introduces me by the wrong name. To make it worse, he introduced me as Jason.... Jason is my older brother. People used to call me Jason ALL THE TIME in high school, and it seems as if I've been living in my older brother's shadow my entire life. So, even though he likely had no idea, that REALLY hit the wrong chord. (I obviously corrected him.)

Begin 30 minute conversation with this person... about nothing. About how she is not an IT person, and cannot handle the "dangerous" tasks, and blah, blah, blah.

Tour continues. He's trying to introduce me to people, but most of them are not there for some reason, and some are out for a smoke break. As two of them come in from the smoke break, he stops one of them and talks to him about some drawing that he needs a copy of, and something that needs to be sent out... 15 minutes later, we're leaving this person's cubicle. Never even introduced me. Oh well. Just seems kind of disrespectful to waste so much of someone's time who is interviewing to work for your company.

Next stop - the print room. Where he starts questioning my abilities. He says "Well, we have <X machine> would you be able to work on that?" 

My response - "Well I haven't worked with that exact model, but I've worked with similar machines, so I'm sure I could handle most problems with it. And anything I can't handle immediately would only take a small amount of online research into the specifics of this model."

"Oh, so you couldn't handle this if it breaks down?"

"Yes, I could, at most it would take a few minutes of research to fix it."

Is it just me, or do all of his responses sound demeaning and condescending?

And last but not least - the server room... which is a closet... with 2 servers... and a box fan blowing on them for cooling. Yeah. That's about all I've got there. (Meanwhile, he continued the whole bit about questioning my abilities to handle their phone system and some other menial tasks.)

Now back to his office, where he can once again make it look like this place truly needs only 1/2 of an IT person, and he can tell me that he doesn't want to pay me like an IT person because I'll be doing front desk work 1/2 time.

So yeah, needless to say, I was pretty upset by the time I walked out of this place. I went to the gym partly because I felt like I was just thrown into a pit of high school bullies, and needed to blow off some steam. I will not be accepting THAT job, even if it is offered to me. 

And just as a closing remark: if you want someone to take your company and your interview seriously, try treating them with at least a tiny bit of respect.

Bad News

This is not quite bad news for my apps, but bad news for me personally... Yesterday I was laid off from my day job.

They have been laying people off left and right for the past year or so, so I'm not 100% surprised, but it's still not easy. I got the news around 2:30 yesterday afternoon, and was able to say some goodbyes.

People have already been giving me job leads, and ideas for places to look for something new, and I am thankful for that. My boss (and his boss) both made it abundantly clear that it had nothing to do with my performance, or my attitude, or anything like that, it's just that the company is going through rough times and they needed to do some more cutbacks. They both said that it was a joy working with me, and that I did great work, and they wish there was another way. I had quite a few people offer to write me a letter of recommendation if I need one, so that again shows that people enjoyed having me there and liked my work.

For now, it's off to the unemployment website and job search websites until I find something new. I'm sure that I will do some work on my apps, and maybe work on some new ones, with my new found free time. But as stated previously, I will likely be spending a lot of time searching for jobs as well.

World Cancer Day - or not

I posted this on Google+, but I figured I would post it here as well. I get REALLY upset when cancer gets so much attention because NO OTHER disease, disorder, etc. gets even 1% of the attention that cancer gets. And cancer does not affect NEARLY as many people as some other ailments.

As most of you know, I have epilepsy. So I am using epilepsy as an example for a few reasons:

1. I am knowledgeable about epilepsy
2. I want to raise awareness for epilepsy
3. I want to raise money for epilepsy research, treatment, and other services for people with epilepsy

I think it's an absolute tragedy that cancer gets so much attention while the rest of us get ignored.

---

Did you know - That epilepsy is one of the most common disorders out there, and is also one of the most under funded as far as research and other resources?

http://www.thedailybeast.com/newsweek/2009/04/10/a-storm-in-the-brain.html

We've been trying to get recognition from places like Google for years, but we keep getting ignored. We've even been asking for Google to support Epilepsy Awareness via a simple Google doodle, but can't seem to get any attention to it. ("We" being the Epilepsy Foundation, people living with epilepsy such as myself, and other non-profit organizations.)

http://www.change.org/petitions/create-a-google-doodle-for-epilepsy-awareness

Although +Google will not support epilepsy awareness in any way shape or form, the official +Google+ page is advocating for "World Cancer Day." It's funny how organizations and businesses help certain charities so much, but completely ignore other causes.

Cancer has MANY awareness months for different cancers. Each has it's own color as well. Epilepsy has one month of awareness and one color - November, and purple - and it gets hardly ANY attention even then. (Partly because prostate CANCER shares not only our month, but also our color!)

Once again, I am standing up in the wake of all this attention that cancer is getting and grabbing some for myself and my cause. And I have no shame in doing it. Even on "World Cancer Day".

A Note to Onlookers

Yesterday after work I went to Walmart to do some shopping before heading home. On my way into the store, I saw an elderly lady on the ground, seemingly in some kind of trouble.

I know what you're thinking: "What did you do? Was she OK? What happened to her?"
The answer: I did nothing. I walked into Walmart and did my shopping. Was she OK? What happened? I have no idea, and probably never will.

Why did I do what I did? Because I quickly assessed the situation and realized that it was already under control.


Background:
For those of you who don't know me and haven't been following this blog, almost 28 years ago I was born with epilepsy. Now, you're probably thinking "What does that have to do with this situation?" and I'm going to say it has a whole lot to do with situation. Or more accurately, it has a lot to do with how I reacted to the situation.

I've been in this woman's shoes. (Obviously not literally.) I've been in a public place with people staring, doing nothing productive, quietly saying to each other "What happened? What's wrong with him? Is he going to be OK? Oh my!"

All that this behavior does is upset/embarrass/confuse the person who is already in an awkward situation, and disrupt the lives of everyone else in the area. Especially in my case: I wake up not knowing where I am, or why I was unconscious, or what happened, or who was there when it happened, or who is there now... that extra commotion just leads to extra confusion.



Back on track:
In the case of what happened yesterday, there were all sorts of people looking in on this situation in the exit/entrance of the store.

Why didn't I stop? As I said... I took a look around and noticed a few things:

1. The woman was not alone. Her family (or what appeared to be her family) was with her.
2. A person of authority was present: in this case, a store employee
3. The family was calm and not asking for help. This tells me that they probably already have all the help they need.

Basically, there was nothing that I could do that had not already been done. The family knew about the situation, the store knew about the situation, and if more help needs to be called the store will do that.

I did my shopping, cashed out, and returned to the place where I entered the store. What did I find? An even larger crowd had gathered, paramedics were there, with a stretcher and an ambulance just outside the door. Again, nothing productive that I can do. My only choice is to keep moving, or add to the chaos that is already present in this situation. 

The only problem: The crowd had grown so much that I had to actually slide past someone to actually get out of the store. They were almost completely blocking the entrance/exit. THIS is where the onlookers truly transform from innocent bystanders, into a nuisance. They're no longer just annoying the person who has already had a bad enough day, but they're in the way of other people who are just trying to go on with their day, and they're possibly impeding the work of the paramedics and other authority figures. Plus, they're forcing an even larger crowd to form, because nobody can get through.

Conclusion:

Judging by what I saw, the woman probably is fine now. Who knows, maybe she had a seizure, or passed out, or slipped and fell... all I can tell is that there was no real panic or rush by the family or the paramedics. If it was a dire situation, the paramedics would have been in a (controlled) rush to get her on the stretcher and into the hospital so she could receive immediate attention. Since I did not see that, I can assume that the situation was not as bad as the crowd made it seem to be.

What should you do if put in this situation?

As I said, there are some key things to look for:

Main thing to look for: Is the person alone?
If yes:

1. Ask if they need help. If they are unconscious, call for help immediately.
1. If no help is needed, continue on with your day - forget about steps 2 and 3.
2. Stay with them as long as they need - if at all possible. At the very least, try to stay until help arrives.
3. Ask if there's anyone you can contact for them. Family, friends, significant other, etc.

If no:

1. Quickly assess the state of the people with them: 
1. Are they people of authority? This can be police/security, firefighter/paramedic, an employee/manager of a store or facility, etc.
1. If yes, there's probably nothing you can do. If not, maybe you can call someone.
2. Are they family/friends of the "victim"? (victim, for lack of a better word)
1. If yes, Are they calm?
1. If they're calm, the situation is likely under control. If you feel like it's necessary, ask if you can help in any way. If they say no, continue on with your day.
2. If they're not calm, see instructions for if person is alone.
2. If not family/friend, and no people of authority, see instructions for if person is alone.

This is obviously just a BASIC breakdown of how you should deal with a situation like this. I'm sure that there's more that I may be leaving out. In the end it breaks down to this: if the situation is under control, sticking around is not helping. If it's not under control, check to see if you can be of assistance.

If you have medical training - are a doctor, nurse, paramedic, etc. - you may want to stop, regardless of the situation, and ask if you can help in any way. Otherwise, you are likely just going to get in the way in many cases.

End of Epilepsy Awareness Month

Yesterday was the end of Epilepsy Awareness Month. To those of you who purchased Auto Respond last month, thank you VERY MUCH.

I only got 3 purchases last month, but I still donated $10 to each organization (The National Epilepsy Foundation, and my local chapter - The Epilepsy Foundation of Rochester, Syracuse and Binghamton.) It's not much, but I know that to organizations like that every little bit helps.

Throughout the month I posted an Epilepsy Fact of the Day (#EFOTD) on my social networks. For those of you who may not have seen my posts, or may have missed a few, all of my facts (and their sources) are now available in a word document located here: http://ow.ly/ep7af

If any of you would like more information on Epilepsy, now or in the future, feel free to contact me or contact your local chapter of the Epilepsy Foundation.

Thanks again for the support I did get, and I hope you have all learned something from one of my facts or blog posts this month!

Making Life Better

Here's a lesson on how to make life more bearable. This is a very specific example of a strategy that can be applied to many situations.


A long time ago, I made myself a promise. I promised myself that I wouldn't allow my epilepsy affect my life. For anyone who has epilepsy, or knows anyone who has epilepsy, you know that keeping that promise is impossible.

Instead, over time I have changed my mission statement. I've decided not to allow my epilepsy to affect me negatively. I know what most of you are thinking... How? How does epilepsy not affect you negatively?

Well, there are positives and negatives to everything in life. I learned this, more than ever, in college. I went to college for Computer Engineering Technology. As part of my degree, I learned that for every choice you make in designing computer hardware there is always a positive effect and a negative effect. More memory means you can process more information (+) and get results faster (+) but it costs more money (-). Larger cache means that data is transferred quicker (+) and is processed quicker (+) but at a higher possibility of data mismatch (-). The entire premise of my degree is deciding which benefits (+) outweigh the costs (-) involved.

Using this same idea, I can say that for everything has my epilepsy has caused negatively, there has also been a positive aspect. I have seizures (-) but I can go to epilepsy camp (+) and have made life-long friends (+) and memories (+) while there. This summer I had my first seizure in 7 years (-) and can't drive for 6 months because of it (-), but I was able to find a medication which is better suited for me (+) and I learned more about where in my brain my seizure are generated (+) as well as how my seizures actually progress over time (+).

Life as a whole is about getting more positives (+) than negatives (-), and I can truly say that I have had more positive than negative in my life due to my epilepsy. But if I didn't have the right attitude toward the situation, this would not be the case.

I have dedicated a large portion of my life to not only making MY life better, but also to giving other people with epilepsy a better standard of living. I went to camp as a camper from the ages of 8 to 17. When I turned 18, I became a counselor at camp, and I do so for absolutely no compensation. I Volunteer a week of my summer (-), every year, to being with these kids and making their lives better (+). Now, don't get me wrong... I don't do it ENTIRELY for the kids. Camp is still a GREAT time for me as well (+). Most of the people who I grew up with at camp are also still there as counselors (+), some of which are my best friends (+), and I wouldn't ever allow myself to not spend that week with them.

Tonight, I spent time talking to a friend with a 4 year old son who just had his first seizure (-). Explaining to her how to deal with it (+), what what it means to her and her child (+), and where to go to get information (+), among many other things (+++). This is something that I enjoyed thoroughly. Don't get me wrong, I'm not at all glad that her child had a seizure, and I feel awful that she had to witness that (-). But I did enjoy talking her through it. Witnessing her go from a scared parent, to a calm and collective parent with a plan of how to proceed with her son's potential treatment. The joy of the fact that I was able to help someone deal with what I KNOW from experience is a terrifying thing. As far as my +/- count goes, that's about (6+) and (2-) for my friend. She now has information, confidence, and security even though her son had a seizure.

Now, as I alluded to earlier... it is impossible for epilepsy to not have any negative impact on my life. But if my epilepsy leads to more positive impacts than negative impacts, the OVERALL impact  is positive; and that's the part that matters.



TL;DR - In life there are positives and negatives to everything. If you can find a way to create more positives than negatives, ANYTHING can become a positive impact on your life.

Epilepsy Awareness Month

PERSONAL BACKGROUND

As you may or may not know, I posted a personal update a month or so back which talked about switching to a new medication, and the impact it was having on my life at the time. I'm switching from a medication that I have been on for roughly 25 years which I take to control epileptic seizures.

27 years ago, my mother gave birth to a healthy 9+ pound baby... with epilepsy. My parents and doctors tried 2-3 different medicines to control my seizures before settling on Tegretol; which I was on from a very young age (probably around 3) until about a month ago. It controlled my seizures well but, since I have been on it longer than I can remember, I had no idea what side effects I was seeing from the medication.

In July I had my first seizure in over 7 years. Since I had a breakthrough seizure, my doctor suggested I try a new medication which tends to have fewer side effects. So far it is doing wonders for me. No seizures since the one in July, I have MUCH more energy, I can think more clearly, and I just feel like a weight has been lifted from me.

Another thing that happened as a result of the seizure in July is that I cannot drive for 6 months. Assuming that my new medicine (Keppra) continues to work, I can start driving again in early January. This has made for an interesting and challenging few months. It has been almost 10 years since I've had to have someone drive me everywhere I go, and I was quickly reminded how difficult that can be at times. However, I'd rather be safe than sorry. Until I know that my new medicine is working properly, not driving is a good idea anyways.

SMALL HISTORY

This is just one of the many chapters in my life-long battle with epilepsy. And as strange as this may seem to many of you, I'm sometimes thankful for my epilepsy.

No, it is not fun having a seizure; waking up and not knowing where I am or what happened. It's not always fun having to explain my situation to others, or even being criticized or mocked because I have seizures. (Unfortunately, that was not an uncommon occurrence when I was a kid.) But on the other hand, my experiences have made me a stronger person. And the local Epilepsy Foundation and their programs (mainly Camp EAGR) have introduced me to some of my best friends and led to some of the most fun times I've ever had.

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EPILEPSY AWARENESS

All of this being said, tomorrow is the beginning of Epilepsy Awareness Month. Most everyone knows that October was Breast Cancer Awareness Month; it's pretty hard to miss it. (At least it is in the US.) Something most people DON’T know is that November is Epilepsy Awareness Month. It is not highlighted nearly as much as breast cancer is, but there are a lot of people trying to change that.

To me, "Breast Cancer Awareness Month" seems to be more about raising money for research than it is awareness. With epilepsy awareness month my PERSONAL goal is not to raise money, but rather to educate and truly raise awareness.

MY MISSION THIS MONTH

To raise awareness, I have compiled a list of 30 lesser-known facts about epilepsy. These are facts that have been taught to me over the years, mostly by the Epilepsy Foundation, and that I feel are important for other people to know. The facts have been arranged in a specific order to start small, and eventually move to some more mind-blowing facts. They also progress with a very logical flow.

Each fact contains not only a fact, but a credible source of where the information can be confirmed. I will be posting these facts, one a day, on all of my social media networks as my "Epilepsy Fact of the Day", and they will be tagged with #EFOTD. Feel free to join me in my on-line activities by retweeting my tweets, reposting my posts on Facebook and Google+, or even by doing your own thing.

Just as breast cancer has a color, so does epilepsy; our color is purple. If you would like to join me in my quest to spread knowledge you can wear purple, put one of our purple ribbons as your Facebook, Twitter, or other online profile picture, get some purple lights for your light fixtures (yes, they do sell them!) or be creative in other ways. Just as pink does, purple seems to grab people's attention. So no matter what you do with it, people will be sure to ask you about it!

CLOSING STATEMENTS

If you haven't gathered already, I am very open about my epilepsy and do not mind people talking to me about it. I actually enjoy talking about my experiences with epilepsy, I enjoy teaching people about epilepsy, and I hope that my actions (as small as they may seem) can impact some people. I hope to spread accurate knowledge, as well as get rid of some of the myths and misinformation that is out there, and I hope that you will help me.




TL;DR:

I was born with epilepsy. November is epilepsy awareness month and I will be posting a "fact of the day" all month on my social media networks. Feel free to talk to me about it.

Personal Update

This post was originally part of my development blog, and has since been moved.


I'm at a point with Auto Respond that I just want to keep going, and keep the momentum moving.

Unfortunately, I have had some things happening in my personal life over the past few months which make this a little harder. I am in the middle of switching from one prescription medication to another. Both of these medications have a side-effect of "may cause drowsiness". In my case, that "drowsiness" is the main side-effect that I see from both medications. On Friday, I started on my full dosage of the new medication, and I am still at a full dosage of my previous medication. So right now, I do not always have energy. Saturday, I slept almost all day. Today, I had to go to work, but I have been half asleep all day.

The result of this is that I may not be programming for the next few days, even though I REALLY want to. I am excited to get some new things built into Auto Respond, but I have no energy to do so. I tend to get energy bursts late at night, so if this happens I may get a few hours of work done in the next couple days.

With the last couple dosage increases I have returned to "normal" energy after about a week, so hopefully I will be back to "normal" by the end of this week and can make some progress on Saturday. (I don't program much on Sunday... it's football day. American football, for those of you from outside the U.S.)

The basic purpose of this post is to give you a SMALL insight into what is going on with me personally and to let you know that even though I posted some work the other day, that work may not be completed for quite some time. I apologize if I got you excited for the new version just to tell you that it will likely be delayed, but at least you know what to look forward to in the coming weeks. :-)

EDIT: If you want to know more details about the situation, check out my Twitter and Google Plus feeds. Information about this specific scenario will have started on or after July 3rd, 2012.
Twitter: https://twitter.com/havens1515
Google Plus: https://plus.google.com/u/0/115067553483053011375/posts