A New Film Project: The Why

I was born in 1974.  When Star Wars first came to theaters, I was still a little bitty girl in Venezuela, so my family generally did not enjoy American films in Venezuela when they were first released.  By 1981, my family had moved to South Florida, and the world of cinema opened up to us. No one dove into it more than my father. He really loved to read fiction and see fictional stories on the screen.  On May 25th, 1983, my father took me to see Star Wars: Episode VI Return of the Jedi in the movie theaters.  My experience with that franchise was solidified by the long lines of people wrapped around the theater and the many of them who wore elaborate (at least to me as an 8-year-old girl) costumes. My love affair with Star Wars started in that very instance, and yes, I wanted to be Princess Leia!

Throughout the film, my father’s expressions and emotions as I sat next to him really got to me even as a little girl.  You see, my parents had suffered an unimaginable loss with my brothers (in a tragic car accident) just 3 years prior, and the story of Darth Vader sacrificing himself for Luke, his son, resonated with my father.  I didn’t understand the emotions at such a young age, but later in life, I got it. And it always takes me back when I rewatch these films to that very poignant moment in my life.  Star Wars, in many ways, resonates with millions of people because the story is so utterly relatable to so many.  It surfaces emotions and helps to work through those emotions, be it good or bad emotions.  It’s almost like therapy!  Needless to say, my father then bought the first two movies, and we watched them on VHS at home with microwave popcorn. 

When the prequels came out in May of 1999, my father had already passed.  So the movies took on a new meaning for me. I fell in love with the character of Darth Vader as a little girl and beyond, and now we were being presented with the life story of this character.  It was BRILLIANT!  Sure, there were problems with the execution of the movies, but the story was magnificent and so vividly told.  I was an instant fan!  And then there was the backlash from fans around the prequel films, and I couldn’t understand it!  I was lost.  I often asked, “Did these people watch the same movie?” I couldn’t believe it.  After a time, fans came on board with the prequels, and nowadays, the films have even grown on some.  That’s just what Star Wars does! 

When Disney purchased LucasFilm, LTD, I had some reservations about that, but I understood it.  From George Lucas’ point of view, he made stories for CHILDREN, and it made sense to sell the properties to a company that primarily made stories for CHILDREN.  So, I was willing to give Disney the benefit of the doubt. Then came Rogue One, and I was floored! What a great movie! I was excited. I loved the idea of telling the story of how we came to get the plans that eventually broke apart the Death Star in A New Hope.  The actors were great, the story was great.  YES!!! Bring it on, I said.  And then we got Solo.  I didn’t quite like it.  I thought, “Hmmm, I can leave it.”  And I expected the story to be good; it was indeed about one of my favorite characters, Han Solo!  HELLOOOOO Harrison Ford…. the man that basically turned me into an archaeologist?  What’s not to love?  Really.  But yeah, I was disappointed with that one.  But I still don’t HATE IT, and I certainly didn’t rule Disney out. 

Queue the announcement of Episode VII, The Force Awakens.  Oh… my… god!  The fandom lost their collective shit. No joke!  I did too. I was soooo excited. I couldn’t wait. And when I went to the theaters to see it, once again, my father’s spirit was with me right there in the theater decades after his passing; I was reduced to tears.  I LOVED IT!  I immediately thought that Rey was the long-lost daughter of Luke Skywalker, making her Kylo Ren’s cousin.  That was my original thought as I was watching the movie in the theater.  BUT, as the movie went on,  I realized that no, Rey would end up being the love interest for Kylo Ren and the bridge for him to return to the Light.  The movie for me was NOT about Rey; it was about Kylo.  And I fell in love with Kylo Ren, much like I had with Darth Vader.  And I was left with the hope that Luke Skywalker would go and reunite with his sister Leia, team up with Rey to bring back Ben Solo. 

After the release of Episode VIII, The Last Jedi, like a lot of our fans, I was PISSED!  I was like, what the ever fuck did they do with MY LUKE!?!?!?  Right from the first scene, I was PISSED… when he chucked that legacy lightsaber down the mountain… I looked at my husband, and I said, “That’s not Luke!”  And I was just out… and then they introduced the love story, and yes, people can call me a “Reylo” fan every day of the week and three times on Sunday, but IT WAS A LOVE STORY! We watched Rey change, grow, and fall in love with the MOST unlovable character in the film!  And I remembered that Star Wars was indeed a film about FAMILY, George Lucas said that himself.  And thus, TLJ was partially redeemed in my eyes because Rey and Ben saved it for me!  When we see Ben Solo SAVED Rey from Snoke by killing the man that had held him under his thumb for DECADES, I knew that man was in love.  It was like he was saying, “Torture me, abuse me, enslave me all you want, but you touch her, and I’ll kill you.”  And men only do that for a woman they love.  Go ahead and tell me I am wrong; I’ll wait.  BUT I left the theater going, “Yay, I was right about Rey and Ben,” and at the same time in the same sentence, “BUT WHAT THE FUCK is this shit with Luke?!?!”  Most divisive film EVER in Star Wars, for sure!  And our fandom was irreparably broken. They couldn’t take the good parts of the film with the bad.  The treatment of Luke Skywalker turned everyone against Disney. PERIOD. 

When Episode IX, The Rise of Skywalker, came out, I wasn’t feeling it. I prayed they somehow reversed (or retconned) the whole Luke story, but yeah… I knew that wasn’t going to happen. BUT what we got was almost a complete reversal of EVERYTHING set up in TLJ, which is STUPID… seriously!  No, own the mistake and WRITE your way out of it as real artists do. We didn’t get that. And they didn’t really retcon the Luke thing either OR explain it! I needed to know why Luke just exiled himself. It was not enough that he failed at his quest to turn Ben Solo into a Jedi and ended up almost killing him (which come on… bro!).  I was half expecting him to tell us about Mara Jade and his son (from Legends) and that maybe Snoke and Kylo Ren ended up killing them or something DRASTIC, but noooo….  all this CONTENT in EU/Legends, and you couldn’t be bothered? Bro. PISSED doesn’t even cover it!  AND there was little to no development of the only part I liked about TLJ was Rey bringing Ben Solo back and the love story between them.  I would have liked to see that be MORE defined and definitive. BUT noooo, J. J. Abrams didn’t go with it, probably because Kathleen Kennedy didn’t want to have Ben Solo take the light… but bro… bro… Adam Driver already made Kylo Ren/Ben Solo the LIGHT of these films. Should have let him flow with it.  And a much more interesting story would have been if Ben Solo LIVED and then had to atone for all his sins — we’ve never seen that in film.  Don’t just rinse and repeat ROTJ!!!  AND DON’T GET ME STARTED ABOUT PALPATINE! Oh my god… I mean, I LOVED Rey “nobody,” that was a powerful message, and kudos (at least for that) to Rian Johnson for crafting that message. But noooo, let’s make her a Palpatine and completely DISREGARD ANAKIN’S SACRIFICE IN ROTJ BY BRINGING BACK PALPATINE!  Like… bro!  

But here’s the bottom line folks, ALL 9 of these movies are Star Wars movies.  And you can like and dislike them all, but they are Star Wars.  Why can’t you all take the good parts that you like and be OKAY with that?  Why is it that the fandom has to be soooo divisive and either LOVE it or HATE it?  That’s so black and white and Star Wars, in general, teaches us that there are GRAYS in everything we do.  We, as a fandom, aren’t taking the lessons of George Lucas here.  BE IN THE GRAY! FIND THE BALANCE!

That brings me to this project.  I am a writer and a researcher by trade, I mean, I was originally an archaeologist (thanks, Harrison!), and I love to tell good stories. I have written many things in my life, non-fiction mostly around Information Technology (which I do now), several short fictional stories, video game characters, and quest development. I have also been writing my autobiography “Gods Don’t Die” for a while. And on this site, you can see my poetry. So writing is natural to me.  In the middle of 2020, I got an extraordinary invitation because I have written so much for video games (posted on my TLP Gaming sites) to develop an idea for a trilogy film treatment centered around Star Wars post-TROS. I signed an NDA, was given access to many resources, and was provided a script consultant to work with me. One hundred people were invited throughout the industry, of diverse backgrounds, and would choose 10 of us to write the scripts for their idea.  Of that 1 would be chosen to be optioned and quite possibly developed. 

And I set out to write a trilogy film treatment around a NEW trilogy of Star Wars films set after the events of The Rise of Skywalker, with a bunch of checklist items that the studio gave us that I cannot talk about.  BUT I did submit my idea, and they walked us through how to get our treatments copyrighted by the US Government in the Copyright Office, and the studio APPROVED my copyright request.  That means if they ever like my idea enough, they can come to me and option it.  In July 2021, the studio let me know that I was NOT selected to move on actually to submit scripts, which is OKAY.  But they were so impressed with my story and offered me an internship with their creative writing program.  I was NOT able to take it, because as you guys know from my site here, I am also the sole breadwinner for my family.  I couldn’t just take off for 10 weeks to go “be a writing assistant.”  BUT I am not the type of person that takes a “NO” and accepts it. I am the type of woman that takes a “NO” and then asks what’s next? 

I know I am new to all of it, so I wanted to teach myself to be a “proper” screenwriter (just another form of artistic expression that couples with my love of film), and I am a die-hard fan of this franchise, so why not?  So, I am in the middle of actually writing the three scripts for my movie idea.  AND I will be turning them into a fan film — a graphical narration because making movies is very expensive.  Let the fans enjoy what could be if you take some time and plan out a GOOD COHESIVE story, even if it comes from what some fans call a “dumpster fire” of a trilogy that the sequels are touted to be.  I am applying here the same thing I said about JJ Abrams writing himself out of the pickle.  WE CAN WRITE OURSELVES OUT OF THE DUMPSTER FIRE!  There are good characters here, and they just needed to be utilized better.  That’s what this project is about, and I hope you all join me to make it a reality! 

I can’t wait to get started!

Love,

Maria (aka Danitsia)

< — Back to the Sequels After the Sequels Film Project Page

[VEGAN] Red Lentil Chili with Basmati Rice on the Instant Pot

Another great vegan recipe for you guys! This is a vegan take on the classic chili. You do need an Instant Pot, at the very least a slow cooker. Here is what you need:

(Makes 4 Servings)

TOOLS

INGREDIENTS

Vegetables

  • 1 cup of freshly cooked corn (off the cob) -or- 1 15 oz can of corn, undrained.
  • 1 cup of fresh tomatoes cut into small cubes -or- 1 14.5 oz can of diced tomatoes, undrained.
  • 1 cup of cooked black beans or red kidney beans -or- 1 15 oz can of black or red kidney beans, undrained.
  • 1 15 oz can of tomato sauce.

Grains

  • 1 cup of red lentil beans, dry (Sprouts | Whole Foods) -or- 1 cup of regular lentils, dry.
  • 2 cups of basmati rice.

Other Ingredients

  • 1 tablespoon of minced garlic.
  • 2 teaspoons of ground chili powder.
  • 1 tablespoon of garlic powder.
  • 1 tablespoon of onion powder.
  • salt and pepper.
  • 1 tablespoon of olive oil.
  • 6.5 cups of water in total.

STEP ONE

Make the rice, preferably in the ceramic non-stick insert of the Instant Pot, but if you don’t have that you will have to empty the rice into a glass mixer bowl and cover it.

Combine the 2 cups of basmati rice, 3.5 cups of water, olive oil, salt, and pepper to taste in the Instant Pot insert. You can sprinkle a bit of garlic powder in as well (about a teaspoon or so) and stir everything up.

Close the lid, making sure to turn the seal to [SEALING].

Use the [RICE] setting on the Instant Pot, natural release for 10 mins after the timer ends.

STEP TWO

If you have the additional Instant Pot insert, skip down to Step Three.

After the 10 minutes have passed, using pot holders carefully pull the insert out of the Instant Pot.

Carefully transfer the cooked rice to a glass mixer bowl, cover with either a large plate, saran wrap, or the corresponding lid (some mixer bowls do come with lids).

Thoroughly clean the insert of the Instant Pot with cold water and soap.

Return the insert to the Instant Pot.

STEP THREE

Combine the corn, beans, diced tomatoes, tomato sauce, and lentils all together in the insert. If you are using canned corn, beans, and diced tomatoes do not drain them.

Add the spices:

  • 1 tablespoon of minced garlic.
  • 2 teaspoons of ground chili powder.
  • 1 tablespoon of garlic powder.
  • 1 tablespoon of onion powder.
  • salt and pepper to taste.
  • 1 teaspoon red pepper flakes (optional for a little heat, more for a lot of heat).

Add 3 cups of water (2 cups if you are using canned corn, beans, and diced tomatoes). Give everything a good stir.

Close the lid, making sure to turn the knob at the top to [SEALING].

Use the [BEAN CHILI] setting on the Instant Pot.

SPECIAL NOTE: You may see the [BURN] warning on your Instant Pot, ignore it. It’s very sensitive and even if just a small amount of food is sticking to the bottom, it will beep and display that warning. DO NOT TOUCH the pot or turn it off.

Once the timer goes off, do a MANUAL release — meaning carefully set the knob at the top to [VENTING]. Watch out for the steam and make sure the pot has enough clearance vertically.

Serve the rice in a bowl, add as much of the Red Lentil Chili on top of the rice as you’d like. Salt and pepper as you’d like, if needed.

ENJOY!

[VEGAN] Thai Summer Low Mein in Peanut Sauce

This dish is amazing for all foodies. A superb way to start switching a few meals to either vegetarian or vegan in a way that doesn’t skimp out on good taste. Let me show you how! Here is what you need:

(Makes 4 Servings)

TOOLS

  • 2 glass bowls.
  • 1 two or four cup large glass measuring cup.
  • A large iron-cast skillet or stainless steel non-stick skillet.
  • A large sauce pan with lid.
  • A large spatula for tossing veggies in the skillet.
  • Measuring cups and spoons.
  • Small whisk.

INGREDIENTS

Vegetables

  • 1/4 of a red onion, cut into small squares. (Bowl 1)
  • 2 medium sized scallions/green onions (sliced diagonally). (Bowl 1)
  • 1 Poblano pepper, cut into small squares. (Bowl 1)
  • 1 Zucchini cut into thin circles then cut again into half-circles. (Bowl 1)
  • 1 Yellow Squash cut into thin circles then cut again into half-circles. (Bowl 1)
  • 1/2 of a bunch of fresh spinach, washed and stemmed. (Bowl 2)
  • 1 pack of baby bella mushrooms, washed and strained. (Bowl 2)

Other Ingredients

  • 1 teaspoon of minced garlic.
  • 2 tablespoons of olive oil.
  • 1 package of Simply Asia Low Mein Noodles.
  • Pam spray or similar (can drop some olive oil into a paper towel too).

For Peanut Sauce

  • 1/4 cup of creamy peanut butter.
  • 1/4 cup of soy sauce.
  • 1 tablespoon of ground ginger.
  • 2 tablespoons of maple syrup.
  • 2 tablespoons of toasted sesame seed oil.
  • 1 tablespoon of minced garlic.
  • 1 tablespoon of rice vinegar.
  • 2 tablespoons of lime juice.
  • a pinch of ground cayenne pepper.
  • 2 tablespoons of water.

STEP ONE

In the large sauce pan, bring 6 qts of water to a boil with a pinch of salt and a pinch of olive oil.

Cover with the lid.

When water is boiling, add in the Low Mein noodles, cook uncovered for 7-8 minutes or until preferred consistency.

STEP TWO

In the large skillet heat up the 2 tablespoons of olive oil over high heat.

Stir in the contents of Bowl 1 from above.

Toss the vegetables consistently so nothing sticks or burns.

When onions are fully cooked and translucent, lower the heat to medium.

Stir in the mushrooms and cook for 4-5 minutes until they are tender and browned over.

Stir in 1 tablespoon minced garlic. Cook for 2-3 minutes.

Stir in the spinach. Cook until it’s fully wilted into the veggies.

Lower heat to a simmer.

STEP THREE

(NOTE: This is something your partner or older kids could do while you cook the veggies.)

Using your Pam spray (or similar), spray one puff into a 1/4 cup measuring cup before putting your peanut butter into it. Make sure the cup is covered by the spray and put your peanut butter into it. This keeps the peanut butter from sticking to the measuring cup. Drop it into your large glass measuring cup.

Add the sesame oil, soy sauce, rice vinegar, and water to the large glass measuring cup. Stir all the ingredients together with a whisk.

Add the maple syrup and lime juice, keep stirring.

Add the ginger and cayenne pepper, whisk everything together.

Pour over the veggies in the skillet.

STEP FOUR

Once your noodles are cooked, drain them and add them to veggies in the skillet.

Stir everything together and serve.

ENJOY!

IT Management in Today’s World

Everyone thinks IT Management is this lucrative unattainable thing that they can dream about but not ever really snag. Well folks, that’s just simply not true. But what is does take isn’t hard work, but SMART work.

See I started my IT career when I realized that I couldn’t be the real-life Lara Croft and find the rarest, most sought after treasures of the world. I went to school in pursuit of that very dream. My naive self thought Cystic Fibrosis wouldn’t hit me like it had hit others; my whole life until that point I had pretty much avoided the complications that came along with it. What archaeology required of me was non-stop travel, and thousands of hours of on-site hands on experience. Lara Croft didn’t have Cystic Fibrosis; a very harsh reality that shook me to the core. So I had to reinvent myself. And that I did.

What started off as junior level web design, landed me here… at Program Director level, hell more like CEO level because I did run a very successful consulting practice for 14 years. And that wasn’t because I worked hard for it… don’t get me wrong I did put in the hours no doubt about it. But I worked SMARTER! By that I mean I questioned everything, and sought answers to all the problems that came my way. I didn’t just sit in front of talented managers and vice presidents trying to sell them something, I learned FROM them. I would ask questions about what they did in the day to day and what pain points they had. I wrote is ALL down! Or would record the sessions with (wait for it) my micro-cassette recorder.

So my education in IT came through those people, from the project manager I worked as junior web designer under to the CEO of a major banking corporation. That’s what I mean by working smarter. You have to approach every project with the attitude of “what can these people teach me”…. and yes even sometimes you end up on the other side of that coin. With a chance to teach someone that’s hungry enough for it something you’ve learned.

I can say that I learned so much from the team I was honored to be a part of at CA. On the top of that list, I would say I learned the most from Joseph Velliah. Boy, when I say he is super talented, I don’t do it enough justice… he’s incredible. And he HUNGERS for knowledge from his peers. I know he must of learned at least a few things from me as well. Super exceptional architect… if he’s not doing software architecture and leading a development team as manager, they are SEVERELY under utilizing him.

Alex Geslani is another one that I learned a lot from. When you come across someone that’s humble and super chill yet unbelievably talented… wow. That’s a hard combo to come by! Alex has that in droves… if he’s not leading a network management team, again he’s under utilized. His ability to look at a system and find the BEST most EFFECTIVE way to run it against a set of business requirements is bar none boys… bar…. none. And that also comes from his ability to not just hear his co-workers out, but LISTEN. Really listen.

And Chrystie Seidl, who honestly could have done the VP job over and over again three times around, backwards, with her eyes closed. She also learned quite a bit from the people around her. I know she learned a lot with me (not just from me) when it came to navigating working with someone with a grave illness like Cystic Fibrosis. There were times we both cried on the phone over how tough it was to be stuck in a hospital. Give that girl a medal, I say because not only did she have me to deal with but there were two members of her team dealing with terminal chronic illnesses.

This is basically the real problem in IT. Yeah you may see these incredible salaries and the job postings out there, but there is so many people that apply to those jobs that it is overly saturated. So talented people that otherwise should be in those roles are having to take lesser jobs that under utilize their talents because… you guessed it… they have to feed their families. It’s that simple.

So IT management in today’s world is flooded by people that probably shouldn’t be there, and have people reporting to them that could literally run circles around them and then some. Everyday we see thousands of IT jobs being posted on LinkedIn, Glassdoor, ZipRecruiter, etc. but there are hundreds of people applying to each post. So what can we do?

To be honest? Nothing. This is how it’s going to be in our future. Technology companies are popping up left and right, so there will be job postings thrown left and right. But how likely are these new companies going to have the longevity of some of the bigger names in IT like Microsoft, Google, and Amazon? Not much. Unless we start coming out with exceptionally unique technology.

That’s where we should come together to get our own small businesses. Those of you applying for lesser jobs, go ahead do what is needed to feed your families but don’t pour your heart and souls into that work. Instead grab you other talented buddies and start something of your own! That would be working SMARTER, for sure. #BeYourOwnBoss #WorkSmarterNotHarder

The Importance of Enabling the Disabled at a Corporate Level

Since the announcement of Broadcom’s takeover of CA Technologies in July of 2018, I have applied at nearly 1,000 different jobs. Many times I have gone through several interviews over the phone and/or via Skype and they absolutely love me, my talents, and my achievements. However, when I get to that face-to-face interview, I often either have to walk from a parking lot that’s pretty far away and then walk through a big office building to get to the interviewer’s office, which 9/10 times leaves me either a) gasping for air or b) having to tote my portable oxygen concentrator with me. Either of those two things always ends up in the company, that until that moment loved me and was definitely interested in bringing me on board, never calling me back. 5/10 of those times I get a courtesy email that says they’ve chosen another candidate…. the other 5, in absolute silence.

Every company that operates out of the United States is bound by the laws set forth in the American Disabilities Act of 1990. So they cannot by law discriminate against you based on your disabilities, but does that extend to the interview process? I am not sure it does in practice, even though the Act does include job application and hiring processes. Besides, does anyone know how hard it is to prove discrimination? It’s nearly impossible!

But… that’s neither here or there. What I want to talk about is educating our US-based companies to think differently, think outside of the box, and instead of “just complying” with the laws, do more than just be compliant. How can we start to educate the corporations of America to do more? By talking about it! That’s one sure fire way. Another is to provide tools (like videos, ebooks, checklists, classes, etc.) to corporations that can be easily accessed and distributed.

One of the best ways to accommodate our disabled brothers and sisters is to provide a strong remote-work program as part of your hiring process. Almost every job, with the exception of construction work, landscape design and maintenance, and a few others, can be done by use of a strong internet connection. The problem there is that this is what corporate executives think remote work looks like….

… but in fact it actually looks more like this….

… yes, most if not all remote workers I know will work way past that 6 o’clock clock-out time and into the wee hours of the night. Why? Because we’re hyper focused on the work we’re doing? Yes… and no…. mostly it is because our brains associate the drive home with a clear separation and as remote workers, we don’t have a commute to keep that delineation alive. So sunset comes and we don’t even notice. ESPECIALLY when it’s work we enjoy doing. But most of us are in fact much more productive in a work-from-home environment than we ever are in an office setting. There are Stanford University studies to confirm that.

At this point you might be asking yourself, “Well, what can I do? I already have a job.” Or “What can I do if I am looking for a new job?” Simply talk about it. Even if you do not have a disability, but maybe you know someone that does. Talk with your HR department and ask them about referrals for people you may know. Talk with your disabled friends, maybe help them put together a resume. A lot of us are AFRAID to get out there and look because rejection has become such a part of our lives. If you are bold enough and have a good relationship with your HR representatives, ask for a meeting to talk about your disabled colleagues and forward some information over to them.

If you happen to be in my same boat, where you are disabled and have been unable to find new opportunities, join me in posting articles, perhaps writing an ebook or hosting a class here on LinkedIn Learning. Just keep talking about your experience! If you brave enough, get on the TEDx talk circuit and give public speeches on how to enable the disabled. We are not the sum of what we cannot do, we’re the culmination of the vast things we CAN DO. Remember that!

The Problem with Unemployment

Back in November I received the news that my position at CA Technologies, where I had been for nearly 5 years, would come to an end due to the acquisition by Broadcom. Back in July of last year, we got the news that we had been sold. So I wasn’t shocked at the hammer coming down in November. I had polished up my resume, worked on my LinkedIN Profile, and started revamping my portfolio page (found here on this site) to showcase my talent in business analysis, project management, and more.

Its now been months since my position was eliminated and I was laid off. And I have applied at over 900 positions, been on countless interviews, some that even took me into multiple interviews, and two prospects that I really honestly thought would turn into full time positions. That’s way more than most of my colleagues that got laid off with me back in November. I am now out of severance, and had to file for unemployment assistance, which in Arizona is only $240/week. That doesn’t even cover my prescriptions.

Luckily, we did find a house that charges $1450/month, a huge savings for us from our original apartment that cost $2150/month. So that’s a big help! But aside from that, there isn’t much we can save on. Especially when it comes to having a chronic illness like Cystic Fibrosis. My doctor’s visits and clinics are astronomical without health insurance, as you can imagine. The CFF does help with the clinic visits but I absolutely hate going to clinic for the small stuff. I’d much rather visit my primary doctor, Dr. Ortiz, who is AMAZING with my CF and works very well with my CF Pulmonologist, Dr. Liao. Dr. Ortiz is one of those rare doctors that actually LISTENS to the patient and works with you to educate not only you but himself too. He’s a knowledge seeker, and has really enjoyed seeing me because its an opportunity for him to learn more about Cystic Fibrosis and pulmonary diseases. As an internist, he WANTS to know as much as possible. That’s truly something unique.

My BIGGEST problem is the reality of my CF. I do not KNOW when or for how long I would need to be admitted to a tune-up or to clear up an infection or just be too sick to work. I’m not a mind reader to know that, but it would be irresponsible of me to NOT let my future employers know that I have a disability that requires us to be more flexible than you would with someone else. And I would feel awful to hide that from possible employers. Its just not in me to be that way.

I hid my CF most of my life because of THIS very reason —- we’re treated differently. My parents really did not want me to be treated differently so they instilled in me a sense of silence about CF. None of my friends knew I had this growing up…. NONE. They would ask about my lungs and coughing and all that and I would just say I have chronic asthma. But many years ago after running into Claire Wineland, I decided it was time to let it all out, and just like she did, live proudly with the fact that I have this illness that I was born with and its hard and its life-altering and its life-shortening. I’ve never looked back from that. And I wouldn’t hide this part of me, part of who I am, from anyone. You are either going to appreciate me for ME, do so for all of me, not just the parts that you want for yourself.

This has led to me the reality that even though we have all these technological advances, the accommodations for people like me — not just CF’ers, but anyone with a chronic illness — is limited if even really offered. This HAS TO change. Just because I occasionally get sick, doesn’t mean I do not have the capability or capacity to continue my work and bring value to the companies I’ve been applying for. I know that we all have value to contribute to any one of these companies. And the thing is we’re probably more inherently grateful about someone giving us the opportunity, thus we are probably more loyal than most.

No lie, my job at CA Technologies was stressful at times and there were times where it left me thinking if I should quit and move on, but because I had fought so hard to get the accommodations that I had, I ALWAYS stuck it out. And once my relationship with my boss got personal and more genuine, I wouldn’t have traded it for the world because I worked with some really talented people that GOT ME. This made me so appreciative for all the things I knew I was getting in return for the work I did for them.  I ultimately felt valued and appreciated.  There is no greater feeling than having a company CHANGE THEIR STANCE because they learned through you how to provide better work-life balance to people with disabilities, and I felt I worked really hard to do just that with CA.  Unfortunately, that’s not the same case with the company that acquired CA.  They are far far less accommodating. 

So my endeavor is to try to educate companies through the foundation I created, “Appreciate Every Breath” on how to best accommodate people with Cystic Fibrosis and other chronic illnesses where perhaps some SIMPLE accommodation (with the help of today’s Cloud-Based world) could open the door for some of us to GET OFF social security disability income and start contributing our smarts and our talents to companies that value us, IN SPITE OF our illnesses.  So this part of our care isn’t as far as I know been a topic of discussion, and its a much needed one.  As CF’ers start pushing into adulthood and the very real daunting task of providing for ourselves becomes more and more the norm, we need to address this issue. 

So while Appreciate Every Breath will continue to still help CF’ers deal with the mental weight that’s placed on our shoulders,  a huge part of that is the stress of having to provide for ourselves, having to secure health insurance, having to pay co-pays and prescriptions, and medical equipment — on top of rent, cable, electricity, car payments, etc.  That is a VERY VERY real point of mental anguish for us with chronic and/or life-shortening illnesses.  To help the PERSON all around achieve a balanced mental health, we need to not only enlist the help of mental health professionals but also convince companies to take a chance on us, by allowing remote work, Skype conferencing, working from hospitals during admissions, and making that a NORMAL thing!  Together we can help the OVERALL person.  It just takes education!

Fly Little Butterfly

I look up at the sky,
so blue, so bright,
so full of air, so full of life,
wind blows with such might,

A beautiful butterfly,
starts to take flight,
emerged from its hidden place,
filling the world with grace,

Fly little butterfly,
to the heavens, up high,
in shades of purple,
with such great purpose,

Soar with the wind,
your beauty will never dim,
we’ll remember in kind,
our hearts forever grim,

But we will carry your dreams,
to find the cure for all,
united with all our means,
we will never let you fall,

So fly little butterfly,
to the heavens, up high,
you did your best,
and we’ll do the rest.


Written by: Maria Espino
Dedicated to: Claire Wineland


Claire’s Place Foundation

Change the lives of so many that are fighting to just breathe for another day. Claire’s Place helps families with every day expenses like car payments, electric bills, rent, etc. while their loved ones are in the hospital due to Cystic Fibrosis.

Navigating Work & Health Care Needs

Often, people with Cystic Fibrosis do not get to have jobs or careers. That’s not a negative statement for anyone to take as such, it’s just fact. But as research starts to progress and new medications are developed, tested, and released the reality is that you will (gratefully) be able to focus on a career. This inevitably forces us to look at how we can successfully navigate a balance with work and health care.  Here I talk about the experiences I’ve had and the lessons I’ve learned living life with this chronic illness that often requires me to be hospitalized.  Of course I speak about my own point of view here, dealing with Cystic Fibrosis, but the same can be applied for any other type of chronic illness that presents some real challenges in this area.

In the United States, as with most countries, we have protections under the American Disabilities Act of 1990. I strongly suggest that you become intimately acquainted with all the statues of this law if you live in the United States. If you live in other countries please research if an equivalent law exists there.

Furthermore, in the US we also have the Family Medical Leave Act of 1993.  This allows us to work with our doctors and have what is called Intermittent FMLA that will provide protection of our jobs whenever we need to be hospitalized. However, please take note that these protections do not cover SALARY/WAGES lost due to illness. That is more than likely going to require you to file for short-term disability insurance.  And also the FMLA provisions are only offered after a full year of employment.  That can be an issue for some of us that are constantly in and out of hospitals or sick at home and on IVs.  So that means we need to work with our companies and HR team to make accommodations for us under the ADA until we can get on Intermittent FMLA.

Let’s dive in….

Disclosure

Do you tell your employer about your medical status prior to being hired or do you reserve that for later when you are most affected?  The answer is… either or; its a personal choice and its your right.  By law they have to take your experience, education, and skill sets in to account when hiring you through the provisions provided under the Equal Employment Opportunity Commission (EEOC) so if you do disclose that you have a disability, they cannot use that to rule you out of an opportunity.  However, proving that can be difficult and truth be told you cannot really know if that’s why they didn’t choose you or not.  You can choose to not identify, which you have the absolute right to do.  This is the option I most suggest personally.  Then I do talk about it as part of my interviewing process, as I do require some accommodations to be provided.  But at least it gets my foot in the door, or so I’ve found.  I would never suggest that you outright deny that you have a disability, unless there is no option to “opt out” of self-identifying, but there should be that option by law.  If there isn’t an option to opt out, I would try to contact the recruiter themselves and submit through them.

I Got Sick, Now What?

First thing you need to do is contact the HR department as soon as you know you are going to be away from work for more than 3 days.  Your boss is the second person to contact and some folks think it should be your boss first, but no.  Trust me.  HR should always be first.  They know all the options that are available to you that your boss may not know about.  So to avoid any conflicts, contact them first.  Often, they will be the ones to let your boss know as well of your situation.

I had never worked for someone else’s company except my own until 2014, so I had very little experience with the corporate world.  I got sick, with pneumonia no doubt, and had to be hospitalized.  I got a doctor’s note and gave it to my boss.  He believed that to be enough, but it was not.  Come to find out, I ended up getting temporarily suspended for failure to contact HR and take the appropriate channels.  So learn from my mistakes…. contact HR first.

HR will walk you through the options you have.  Some companies, given special circumstances, may allow you take some unpaid time off if you are out of sick days or vacation or haven’t yet accumulated enough time into those banks yet.  Ask about that option!  Its best to struggle without pay for a few days or weeks than to have to struggle with being unemployed and have no access to health insurance and benefits at all.

You need to ensure that you speak to your doctor about your job and having them work with the HR department to acquire all the necessary documents.  Most doctors will require you to schedule an appointment for such work, do it.   I know it sucks to have to pay a co-pay for that purpose, but its necessary.  Some doctors make it much more simple. Where I am, in Phoenix, AZ,  I have OneMedical which has an amazing app on my phone that allows me direct contact with my primary.  Its a great service but you do pay a membership fee to be part of OneMedical. Your CF Center may be able to help you (for those of you that have CF) in getting the paperwork together for free, which is so amazing of them.  But any route you take you need to ensure you have your paperwork and ensure you have the right DUE DATES for all of them.

Returning to Work

Congratulations! You’ve pushed through yet another exacerbation or flare up and you are ready to get back to your life.  Well… not so fast.  Contact HR, make sure they know you are returning to work and on which day.  They may ask you to submit an authorization to work with or without restrictions from your doctors, so be sure to ask your doctors ahead of time for that paperwork.  You should have it whether or not its asked for.  Keep it on file.

Remember to pick up any prescriptions and/or treatments you may still need post your exacerbation and be sure you take the entire bottles with you to work because you want to be sure to have the labels around for reference too.  I sometimes will rather take my pills out for the day to put them into a pill box, which helps it be less inconspicuous to those around me but truth it, by law you have to have the prescription labels on you at all times especially if you are driving a car to and from work.  So while I do put my pills in the pill box, which is what I would take with me to lunch,  I do bring the bottles separately and have kept them in my cubicle and/or backpack or purse.

Lastly, take it easy… do not over exert yourself.  You may be past the worst of it but you may not be out of the woods just yet.

Post Care and Follow Up

You’ve made it back to work and things are getting better.  Whew! Thanks be to God.  But you cannot forget to make time for any doctor visits for post care and of course you have to keep up with your CF Center Clinic Visits whenever they are due.  So you still have to work with HR to make time for those appointments.  For CF Clinic, its probably best to take the day off when possible, because it can be an exhausting thing.  I know that it is for me!  When I get home for CF Clinic, I am pooped and need a nap!  Listen to your body.

Next thing you want to do is follow up on occasion with HR, to see if policies have changed or if there are any benefits that have opened up for you.  You should especially check after your 1 year anniversary.  That’s when Intermittent FMLA becomes available to you and there is a lot of protection for people like us behind that act.  You may also then qualify for Short Term Disability which will help cover the days you have to take off during your FMLA.  So make sure to check in with HR once per quarter.

How to Apply for FMLA

First thing you need to do is qualify for it.  You must be employed for a total of 365 days in order to qualify for it.  Then you need to submit your applications through your HR department.  The forms you need can vary based on your own necessity.  For example if you are the employee, your form would be WH-380-E but if you are the parent of a child with Cystic Fibrosis, your form would be WH-380-F.  There are other forms if you are in the military or a protected veteran, or a family member of a service member that requires your care. While these forms are available in the link I provided, its also very possible that your employer will have similar forms available through their service providers.  So make sure to ask.

Intermittent FMLA allows you set a duration of days per month (or any interval) that would most likely need to be taking off due to your illness.  Whereas, Traditional FMLA is almost exclusive for operations and/or lengthier hospital stays.  You have BOTH concurrently running, but know that your max is 12 weeks per a 365 day period.  That means it is a running total, so that if you took 2 days in June of last year, those 2 days are then accrued back to you on the days you took them of this year. So if you have I-FMLA and take a few days and then later your doctor decided you need to be hospitalized for 2 weeks, you would have to submit a separate form for the 2 week hospital stay that is a T-FMLA and then submit your hours against that claim, not your I-FMLA.  Keep in mind, both are charged against those same 12 weeks.  But the good thing is that your sick days and vacation days are NOT used up here.  So you have those available in addition to your FMLA’s 12 weeks.

Short Term and Long Term Disability

Now FMLA does NOT cover your pay.  It just protects your job during your illness.  Short Term and Long Term disability insurance is what covers your pay.  This coverage can vary based on the benefits that your employers provides to you.  Remember that there is no law that states they have to provide you with this insurance, so that’s something you have to look at when it comes to choosing a place to work at.  But there are some states that require their employers to provide a means by which to buy it,  those states are California, Hawaii, New Jersey, New York, and Rhode Island.

For me, Short Term Disability covered 100% of my salary for the times I needed to take Intermittent FMLA or when I was hospitalized.  That’s not typically the case in most jobs as often they will pay 50% or something near there if they offer STDI (short term disability insurance) at all.  That’s where we as people with challenges need to really look at where we choose to work.  A “inclusion-friendly” company will more than likely offer 80% and up in this situation — many offering the 100% that CA Technologies did for me.  This is still a fight in the political landscape, to treat persons with disabilities as fully capable people that can contribute greatly with just a few accommodations.

How to Use Your Intermittent FMLA

So as with pretty much any job that gives you a certain amount of sick time,  I would use that first and foremost before applying my I-FMLA.  You do only get 12 weeks of coverage so you have to manage that carefully.  If I was feeling awful for a few days and couldn’t quite attribute that to CF itself, I’d use sick time first.  If it turned out to be longer than 3 days and it was clear that it was CF-related, that’s when I’d use I-FMLA.  I tried hard to save up the days where ever I could for any hospitalizations, as those with CF have to have many hospitalizations to combat our chronic infections.  This is of course just my own experience and judgments as to when I used I-FMLA vs. sick time, so please do as you feel comfortable with.

As to how to use it,  the first thing you need to do is establish a method of operation with your HR department.  For me that meant an immediate email to my manager stating the days and/or times that I would need to exercise my paid-time off vs. using my I-FMLA.  If I had severe headaches (I often get migraines), caught a cold, or had issues with my fibromyalgia, I would explain that in my email and then log into the HR Portal to log the days as personal sick time.  If it was something like one of the infections in my lungs was flaring up and I needed to either be hospitalized for a week or two or just needed to do home care, obvious CF-related things, that I’d let her know that I’d be utilizing my I-FMLA.

For my company, I had Aetna portal that I could log into and claim the days I needed.  I would either do this at the beginning if I knew there would be a set number of days I needed off, or at the end of my exacerbations if I didn’t know how long they’d last.  I would then take a screen shot of the portal once I logged my time and email that to my manager along with a Doctor’s Note that allowed me to return to work.  If you are HOSPITALIZED,  that is an important document — a doctor’s note.  You will need to have that available so do not forget to ask your doctors for it.

The important part here is to work WITH your HR office, try to understand their needs and abide by their requests.  In turn, you will find that they will be more open to helping you and working with you.  So that’s really your first point of contact… your benefits administrator in the HR office.

Conclusion

Folks, these are my experiences navigating my cystic fibrosis and continuing to expand upon my career.  Yours may be a bit different than mine, but that’s okay.  My hope for writing this article is to at least let my fellow chronic warriors out there fighting the good fight for their health know that there are place that will value what you have to bring to the table and that it’s okay for you to ask for help.  My body may not be in tip-top shape, but my mind couldn’t be sharper. And the company that manages to see that will surely find in me all the reasons why CAPABILITIES are far more important than disabilities.