Navigating englife with a disability

Blind tax: TC: 320k YOE: 7 This might be a long post, so for those who just want a disappointing CliffsNotes version of the post: "struggle, trouble, dealing with it, in a bubble. Could I have done it some other way? was there any other way? And I guess it's time I'll change things now.". [Since this summary isn't all that helpful I'll give a better tldr here: I am a person diagnosed with a rare incurable condition that effects my capability as a software engineer. It charts my path through the grief of going through the process of dealing with it and how I've made a lot of choices and hope I startakimg some good ones in the future.] Now that I got a cryptic summary out of the way I'll get started. In the final year of my bachelor's degree in engineering (I was 20 y/o) I started having problems seeing the presentations in class. I started having trouble reading my textbooks with the same speed as before. So, my parents insisted I go to a doctor (They are both doctors and they suspected that my glasses may need to be changed out). We went to a doctor that gave me a referral for a lot of additional tests for some reason. I remember that I felt pretty annoyed that I missed a couple of days of classes just for some blurry vision (I had a lot of assignments to complete). But after all the tests I was diagnosed with a condition called macular dystrophy (Cone dystrophy to be more specific). It is a degenerative condition that leads to progressive blurriness and eventual blindness in the region of the retina that allows you to focus on things. I was told that this usually happens to a couple of groups of people, people over the age of 55 develop an age-related version of this condition, and kids with a genetic defect, develop it around the age of 7-10 and learn to live with it gradually. With my genetic study results it was found that I belong to neither of these groups, so there was little to no information available on my specific condition. Based on how quickly my vision got worse, I was told that I could be legally blind in 5-10 years. And there was no cure. Denial. I remember thinking that this was pretty drastic diagnosis for a little blurry vision. My parents were instantly depressed, and they were wondering what I'd do with my life, since the doctor said I shouldn't work with computers or at any job where I depend on my eyesight. They weren't one of those wealthy doctors that had enough savings to continue supporting their kid for the rest of his life. I wasn't going to change my life or my plans for a little blurry vision. It was probably just due to sleeping poorly and I could fix that once I graduate. Graduate->Get a decent software engineering job->Decide on whether I should pursue a Master's degree-> and get a better job. I continued attending classes, continued riding my motorcycle to the university and back. I attended a few campus recruitment events and got offers from 4 companies (I picked a role to be an android/iOS dev) and life was pretty much normal. But then I had 2 serious accidents while biking around town (Both caused by slow reaction times on my part). I was lucky that I didn't break anything, but I lost quite a bit of skin around my wrists, elbows and knees. Maybe something was wrong with me. Anger. I graduated and got my bachelor's degree, joined my first job as an iOS dev, and started doing pretty well at the job. I realized some adjustments needed to be made to continue life as usual. I started driving well below the speed limits, sat closer to my monitor, read books by holding them closer to my face, etc. I even started applying to grad schools to get a more focused education. At this point in my life, I remember wondering why everyone around me started asking me really stupid questions. "Why do you sit so close to the monitor?" - "To do twice as much work as you in half the time" "Why are you driving so slow?" - "To encourage you to walk rather than ride along with me" "Why can't you see that awesome thing over there?" - "Cause I was distracted by the greatest loser in the world pointing at random crap" "Not seen you in a while, why aren't you keeping in touch?" - "Cause I'm still deciding if your voice is more annoying than your face" I ended up avoiding all my friends from undergrad and high school to avoid their stupid questions. At work I quickly became the only junior dev to get the ego of a senior dev, and I became very impatient with people quick. I couldn't bear to look at all the idiots around me with their near perfect vision and still struggling to read/ debug code, failing to decode clear documentation or general work-related development. Even my parents just treated me with pity and sadness, as if my life was over. Everyone just pissed me off so much. One of my newest (and ironically the closest, at this point in my life) friends from work described me as an "aloof angry man". Sometimes, it takes someone who truly cares about you, to look past your ugly disgusting exterior and find someone hurting on the inside. My mother (my hero) was hurt by some of the things I'd said or done in my anger, but she still insisted that I be better and do better. She forced me to volunteer at an orphanage and a special needs orphanage. She took in my grandparents and an aunt of mine who suffered from senile dementia and Alzheimer's disease, and we took turns to take care of them. These things did not solve my anger issues or my aloofness, but they help calm me down a bit. For the second time in my life, since hitting puberty, I had to re-learn empathy and patience. I tried being nicer to the people around me. I was nicer to my teammates at work, and we quickly became really good friends. Seeing how successful each of them became makes me swell with joy and happiness (These were some of the nicest people anyone can have the opportunity to know, which makes what I did to them in my self-pity spiral, even worse). I did well at work, got promoted and even shipped out a couple of products. And I got into the grad school of my choice (Not the best academically, but the most affordable for the quality of education I could get). My plan was in place. Complete my Master's degree -> get a good job -> work hard -> Get to a position where my blurry eyesight isn't going to be a problem -> get successful -> get rich. I accepted my current situation in some part, but I had not truly understood the meaning the word "degenerative" in the phrase degenerative condition. Bargaining. I was determined to live the American dream. Moved to the states and started grad work. selected my coursework selfishly. made a ton of new friends worked hard at my classes, partied harder. With some minor adjustments to my life, I could cope with my coursework. I just worked 1.5 times harder than others to do well at my courses and I started applying to companies pretty ambitiously (I was naive). Life was good. I was sure I had 10 more years of my vision left (The doctors told me 5-10 years) so I was determined to make the most of it. It was simple. Get to the position of a director at a major tech company in 10 years. And I was going to have fun along the way. I took part in all my on-campus events, attended all the parties, the whole experience. I quickly realized I needed a way to get around towns for my plans and applied for a learners permit as well. They even tested my eyesight at the DMV before issuing a learners permit and my eyesight was still well above the minimum bar to drive legally (of course it was, I still had 10 more years, that's all I needed). I was a man on a mission. I aced my exams in my second semester while taking more courses than the recommended courseload and leased a car for a month to practice driving as much as I could before taking my driver's test. I could literally visualize my success ahead of me. everything was going to work out and I would make it so. I drove up to the DMV with one of my friends to take the driving test. I walked up to the counter and paid the fees, and I was asked to read the same lines in the vision test, that I read for the learner's permit. "Please read line 4" "Sure thing". I couldn't read it. I tried hard, I tried to squint focused as hard as I could, and I could not read it with either eye or with both of them. In 2 months, my eyesight had deteriorated enough, for me to change from a person who can legally drive to a person with too low vision to drive. I think the person at the DMV said something about getting a new pair of glasses and coming back for the test. I just nodded and said thanks. Depression. It was getting worse too soon. I forgot that it had already been 3 years since my diagnosis, I had forgotten that my condition was expected to get worse gradually. I'd forgotten, or more likely I chose to forget that my vision will get worse with each day. It shouldn't have come as a shock, but I was shocked. All my plans seemed to have been cut short. What was I even doing with my life. I started drinking excessively, partying even harder than before. A college campus usually has so many people that you can party with a group of folks, get wasted regularly and the moment they start showing some concern for you, you can ditch them and find a new group of friends. In a way I surrounded myself with people but in another way, I pushed everyone away. There were times I lay awake at night just wondering what I'm doing with my life, and then I got up, got out and got wasted. I stopped taking calls completely. stopped attending classes and isolated myself in my own self--pity party. I am scared to imagine what I would have done if I had continued in my stupor of my self-debauchery. But a couple of things changed my perspectives in life. 1. My sister and brother-in-law kept calling me till I picked up and invited me over to their place during my summer break. I wasn't allowed the option to say no, and they even bought my tickets for me. I went through the same cycle with them, as I'd gone through with everyone, I met at my grad school. Get to know each other -> plan some fun activities together -> they notice I have issues with my eyesight -> suggestion about getting new glasses, finding new doctors -> frustration that they cannot help me, or that I can't see the same things they can (as if I wasn't trying hard enough). But unlike my friends at grad school, the added a new section to the cycle, acceptance. They understood part of what I was going through and that was enough for them to accept me the way I am. Reading out the menus at restaurants that we went to, sitting closer to the screen with me when we went to the movies, and zooming in on their phones to show me things they wanted me to see. They do not know this. But for the first time since I got diagnosed, I cried. They were sad tears; but they were also happy tears. The world might be harsh, and I might have been dealt a bad hand, but there were people who accepted me for the way I was, and I think that was enough for me. 2. The other thing that got me out of my own head and back into society was a very special new friendship. It all started with a friend request on Facebook from a student that was currently attending the university where I completed my undergrad degree. We just started chatting on Fb and then continued our conversations on Gmail. After my liberating time with my sister and brother-in-law, I felt well enough to curb the self-pitying to notice when other people are also a bit depressed and through our conversations, I could tell that she was depressed as well. She was the first person I truly tried to be nice to since I was diagnosed, and I like to think that I cheered her up a bit. I shared some of my problems and issues with her and she in return not only gave me acceptance, but also added the expectation of being better, of doing better. Unlike the other close people in my life, she did not offer me sympathy, didn't offer me pity. She just held up a mirror and made me realize that I used my condition as an excuse to treat people horribly. Due to some of our conversations I've had panic attacks that kept me up at night. I was an adult (24 y/o) who only knew how to interact with people by being mean to them. I was a bully, and I did not know how to interact normally with someone. But despite all this she didn't give up on me and proceeded to become my best friend. She motivated me to be better. to try harder, to be nicer to everyone. Because of her I slowly amassed a group of friends who were also really nice people. I learnt to help people, I learnt to value others, I learnt to let people in. And in many ways, I learnt to live again (If you are reading this, I'm sorry if this embarrasses you. I've told you before that I owe you everything in my life, but I guess I never explained in detail, why I felt that way). Acceptance. I adopted a motto for myself "Hope for the best but prepare for the worst". I salvaged my coursework and got my grades back up. and I planned for the future, the ideal one I wanted and the one I might end up with in the worst case possible. I created minor macros and pieces of software on my laptop that would help magnify stuff I am reading and read them out to me if I copied something on the clipboard (At the time windows didn't have many accessibility options). I made protocols for myself for pleasant conversations. I practiced looking people in the eye even if I didn't always know where their eyes were (Blurry vision folks). I smiled at people walking by as if I knew them, just in case I knew one of them and just didn't recognize them. I even practiced walking around all unknown streets whenever I moved to a new place, just to know the area better (It would be a boon the day I go blind). Even now I know my neighborhood well enough to walk around it, with my eyes closed. I got a job at Intel, but my joy was marred by the decisions I had to make while joining. Do I declare my low vision disability and bear the consequences that it might bring with it or do I just hide it and try to blend in. Regretfully, I chose the latter ad hid from everyone that my vision was bad and getting worse. My assumption was that at this moment, everyone else could do the same work I could in half the time. So, I tried twice as hard. The first 6 months after I joined the company, I was one of the poorest performers in the team, I was even told as much by my manager. But I was working hard in the background. taking notes in every meeting and ensuring that I revisited every note and made a document out of it for future reference. I learnt about every facet of firmware our team worked on and worked late into the nights every day. In meetings I struggled to see what was being presented in the meeting rooms (we literally had times when someone put up a slide on the screen with tiny text block of data and everyone stared at it before discussing about it). It was a struggle, but after 6 months I had a list of pain points and started implementing minor changes to improving my quality of work without letting people know that it was to improve my quality of work. I improved my team's meeting hygiene by ensuring that agendas and slide decks are shared before the meetings, during meetings I brought my laptop in as well and looked at the slide decks on my system with magnification software while it was being presented in the room. almost overnight, my performance improved, and I quickly started getting promoted. I never really stopped trying hard or working less hard after learning everything in my field cause, as a person with low vision, I knew it was very easy to overlook something. I initiated cross team collaborations between the electrical, hardware, product and customer teams to start cross-org retrospectives and ways for every team to improve based on each other's learnings. After 6 years at Intel, I finally decided that was time for a change and to learn something new and I started applying to other companies. My process was to make a list of companies that care about their employees and had a strong support system for people with disabilities. For the first time in my application process, I identified as a person with a disability (low vision), and I landed a position at Microsoft as an SDE. I still haven't come out to my team or my manager as a person with disability, but I am left wondering if I should do that now. I always fear repercussions. When the head count has to be reduced, I am always afraid that the folks whose disability directly impacts their work would be let go off first. There are still times when people around me get frustrated with me when I cannot do the things that a normal person could do, or people who feel like I'm a burden because I cannot help with long distance driving, but I have learnt to give them patience and acceptance and that usually leads to them having more patience and acceptance with me. I couldn't be happier with my life, and I am glad that I got this far. During my most recent (personal) retrospective, I noticed that my coding speed has dropped to about 60% of what it used to be when I started working at Intel and I will soon be unable to continue working as an SDE. So, it is time I make a contingency plan for that as well. There are a couple of options I am considering: 1.Coming out to my team and organization. I do not want them to lower their expectations of me (I don't need any pity). But it might be good to prepare everyone involved for what might happen in the near future with my performance. 2. I could transition to a role of a TPM. Yes, they might make 90% of the comp of an SDE, but their role seems to be that of a tech lead without the coding and it might be just down my alley. P.S.: If you know of any TPM roles that are looking for someone with 7+ years of experience of firmware development with plenty of experience being a scrum master, team/ project lead, and the architecture documentation guy, please let me know. #tech #microsoft #intel #disability