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.Â
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.Â
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!