One of my goals on Financial Samurai is to share different perspectives. Roughly 15% of the world's population (1+ billion), lives with some form of disability, of whom 2-4% experience significant difficulties in functioning. This is the minority group I'm most passionate about fighting for in this extremely competitive world. My hope is that more awareness will create a more loving and compassionate society. – Sam
My name is Adam. I run the website BlindLuckProject.com where we discuss all things FIRE (Financial Independence Retire Early) and how to make your own luck despite the odds.
Financial Samurai has asked me to share my story of how I went blind and still achieved financial independence at age 32.
I’m sharing this story to spread awareness about:
- Visual disabilities.
- What it was like to slowly go blind in my young adult years.
- How I went about successfully finding engaging work.
- Seeking reasonable accommodations when needed.
- What my retirement looks like
I will also review my thought process at various stages of my path to financial independence. Hopefully, sharing what I’ve learned along the way can inspire other blind individuals, people with other disabilities, and anyone facing adversity in their lives.
While every situation is different having a strong process to evaluate opportunities at critical times is important. You can do this!
Admitting There Is A Problem With My Vision
Let’s start from the beginning. When I was a kid, I actually had better than perfect vision (20/10). In middle school, my brother started having trouble seeing in the dark.
After bouncing around doctors’ offices, we were both diagnosed with a condition called retinitis pigmentosa. It's a genetic degenerative eye condition that starts with night blindness, then progresses to tunnel vision, and eventually total blindness over many years.
At the time of the diagnosis, I was 13. Other than a bunch of medical students being very interested in looking inside my eyes, I didn’t really think I had a problem. I was still playing sports, and other than running into things from time to time, I thought I was fine. I told myself if I just ignored it, it couldn’t be real.
Fast forward a few years. I had plans to be a pilot! I had heard that many pilots started in the military to get training and flight hours, then transitioned to commercial planes after their military service. During the intake assessment, I asked the Air Force if having night blindness would be a problem.
“Um YEAH! A BIG problem!” the recruiter said.
So my pilot career was over before it started. This incident brings us to my first lesson.
When faced with a problem, don’t give up. Find your best available option!
My grades were good, and I’d been accepted into several great universities. I figured If I was never going to fly a plane, I should probably get a degree and go from there.
Taking Things One Step At A Time Before Going Blind
Going through college while losing my night vision was interesting…
At that time, I had stopped driving at night. While walking around campus at night, I fell into plenty of bushes, ran into street signs, spilled beer at parties, and even hit a biker with my car. (Don’t worry. He was fine!)
It was becoming apparent that as my eyes got worse, my life would be a long string of adjustments. What was easy just a few months ago, such as driving at night, was now a serious liability.
I graduated from college in 2010 during the Great Recession with a degree in Construction Management.
News Flash: There was basically no construction happening in 2010.
In fact, not many people were hiring much of anyone unless you had 10+ years of experience. I worked part time at the university library and eventually got a job sweeping the floor of a large welding shop.
I also helped the quality department with data entry. Not exactly a great start to financial independence or early retirement! But I figured this was better than moving back home. (You’re starting to see the stubborn side of me here!)
Frugal Living
It was a hard time, but this experience taught me a lot about frugal living. Amazingly, I was able to stay out of credit card debt. Plus, I demonstrated my work ethic to my employer. (I was working seven days a week at that point.)
As the economy improved, I was promoted to a project manager position. I ran projects of all sizes. My first jobs were simple railroad and pipeline bridges. I then got into military hardware and R&D. Things were going pretty well! I was saving money, I bought my first house, and the economy was starting to pick up.
Then the wake up call happened!
On my 26th birthday, I had to turn over my car keys. I’d been struggling to drive to and from work. My employer had been kind enough to let me flex my hours so I could drive in daylight. If I needed to go to a job site or vendor, I grabbed an intern to drive me so I wouldn’t have to drive in unfamiliar places.
But it had gotten to the point where it just wasn’t safe anymore. This was possibly the hardest thing I’ve ever had to do. In America, driving is freedom- a rite of passage into adulthood. And in a car-centric world, many people saw it as a requirement.
Learning To Ask For Help As My Vision Faded
At first, I was embarrassed, ashamed, and felt unworthy. I was a man. I was supposed to be strong and independent. Unlike my 13 year old self, I couldn’t just ignore it anymore. I realized, ready or not, going blind was coming.
So as the clever problem solver I was, I decided to take a taxi to and from work every day. (I had strategically bought my house close to work). Uber hadn’t expanded to my city yet (2013). (It's pretty nice today that you can call a ride and it’s there in a matter of five minutes.) The taxis in my area were less than reliable. They were often late, smelled bad, and had grumpy drivers who demand tips.
I was standing in the rain one day when an acquaintance working at the same facility stopped and asked if I needed a ride. And thus, the carpool was born! Turns out it’s easier to find a carpool than you think. You offer to buy someone a tank of gas once a month, and people will line up to give you rides!
Furthermore, I was saving a ton of money by not owning a car. I learned this not driving thing wasn’t so bad after all.
Embracing Reality And Making The Most Of It
This period is when my savings rate really started to increase. I was saving over 20% of my income.
I even took on a family friend who was going to a nearby community college as a roommate to make a little extra money (and help with running errands around town).
At this point, I fully understood and accepted that my eyesight wasn’t going to make it to age 65. I don’t like to leave things to chance, so I set the goal to save $1 million by age 40.
It was an ambitious goal, but I had already saved a bit of money. I figured if I increased my earnings and got more aggressive with investing, this was an achievable goal. If I didn’t make it to a million, at least I’d be better off than saving nothing at all.
Facing Discrimination At Work
Now at this point, it was getting pretty obvious to my coworkers and boss that I had some vision issues. Nobody really asked me much about it, and I was too ashamed to talk about it (or even admit it to myself really).
In hindsight, it was nothing to be ashamed of. But that’s wisdom earned the hard way. I was grateful for my job. I worked hard and made the company a lot of money. But eventually, I ran into some issues regarding my pay.
From 2010 to 2015, the economy had significantly improved. Business was booming, and college graduates with my degree were getting job offers for $70 – 80K with no experience. I, on the other hand, was still making only $58K per year.
Unfairly Compensated
That was significantly less than the other more “senior” project managers at the company. Furthermore, I was running about 40% of the company's projects and bringing in about 65% of their profits. Turns out I was pretty good at this line of work. I’d proven myself with measurable results. It was time for me to discuss my compensation with management.
I outlined my responsibilities and how much revenue I managed for the company. In addition, I included the fact that I had brought in $2.1 million profit through the doors in the past 12 months. I asked to be fairly compensated.
Their answer? NO!
In fact, I didn’t get a single penny. I was told in no uncertain terms that I was lucky to even have a job. One of my coworkers overheard the conversation and was pretty upset at how I was treated. As was I.
Now I don’t know if I was discriminated against because I was the youngest manager in the firm or if it was because I was going blind and they felt like I was stuck there.
After all, who would hire a blind guy?
Looking For Employment While Going Blind
It was time to find a new job! Now maybe you’re thinking I should have sued that company. But, I disagree. Did I have a case? Maybe. In fact, I’m sure any lawyer I talked to would say I did.
But did I want to work for a company that didn’t treat me fairly?
Did I want to spend possibly years sparring with them in court?
Would the settlement, if any, even be worth the time, energy, and stress?
Probably not. I decided the best course of action was to find a better place of employment and just move on.
I secretly started looking for a new job. This was a really scary prospect. I had come to depend on one of my coworkers to help me out when I was struggling.
What if the new job didn’t work out?
Searching For Long Term Disability Insurance Benefits
As someone going blind, there are a lot of jobs I simply couldn't do. If I tried something new and it didn’t work out, it’s not like I could have just picked up a job driving trucks or Uber or anything with dangerous equipment. There were a lot of limitations. A job change was a big risk.
But I knew I needed a better plan for my future. While I was researching companies, I ran across a benefit I’d never heard of before: Long Term Disability Insurance (LTD).
What the heck was this?
I did some more digging. Long term disability (LTD) insurance is a policy that pays if you can no longer work due to a disability. So there I was- going blind and finding out there might be something that could help protect me should my eyes get worse. I went to our HR department to ask if we had an LTD policy. Nope. We didn’t. Then I got to thinking…
I can buy car insurance. Can I buy this long term disability insurance? I did some Google searches. It turned out that I could! But there was a catch. (There always is!)
If you have a preexisting condition, the insurance company will either exclude that condition from the policy or just refuse to insure you. Since I was diagnosed at age 13, I was essentially uninsurable. I don’t blame the insurance companies.
Employer LTD Coverage For Preexisting Conditions
Why would they want to insure a risk that was basically a guarantee?
However, there was another way to get LTD coverage. If you are hired by a company that has LTD, you are automatically enrolled. If you work full time through the exemption period, you are eligible. Most plans have a separate waiting period for preexisting conditions that is different from the standard exemption period, but there was still a fighting chance!
Financial Samurai has a great article on the different types of disability insurance policies and what to look for.
With this in mind, I refined my search for jobs that had the following.
- Paid $90K per year
- Opportunity to grow
- Large enough company to accommodate me in the future as my vision got worse
- Had long term disability insurance
I applied for around 50 jobs, interviewed with ten firms, and received four job offers. Finally, I accepted one.
I believe honesty is the best policy, so I disclosed that I was disabled during the application process. (All applications have a checkbox asking if you are disabled. It doesn’t ask about the nature of your disability, just if you have one. It's usually right next to the box asking if you are a veteran.)
What Works When Interviewing As A Disabled Person
Phone Interviews
In a phone interview, I wouldn’t bring your disability up such as being blind unless it impacts your ability to do a function of the job. For example, if the job posting states you need to be able to drive and you can’t, you need to tell them.
Sometimes it’s a deal breaker and sometimes they’ll work with you. However, if you don’t disclose your disability, they will figure out you can’t do the job. Then you will likely be let go. It is not discrimination to fire someone who can’t do a job they said they could do.
My main focus in a phone interview is how I can help the company solve the problem they are hiring for. Remember, this company could be paying you hundreds of thousands of dollars over the course of your employment. They have a need they want to solve.
Focus on that and how you can be that person. It is too early to ask about benefits at this time. That will come when you counter the written offer they give you.
In Person Interviews
It is important for you to show up in the manner you plan to show up every day for work. In my case, my eyes had deteriorated to the point that I used a white cane for safety when walking in new places. So I showed up to all the interviews with my white cane. When asked, I simply explained that I mainly used it for safety, and I could still read and navigate my surroundings.
Of the four offers I received, two didn’t have LTD benefits, which was one of my requirements. One offered me $95K, but I’d have to relocate out of state. The other offered $85K plus bonuses. I would have had to move, but it was still in state. Therefore, I took the job and negotiated a month off before starting.
This new job was as a supply chain manager for a large aerospace company- a job I’d never done in an entirely new industry. This was a huge risk for me, but I had the core skill sets of being good with high value contracts and experience managing people and vendors. I knew that If I worked hard enough, I could figure it out as I went.
Definition Of Legally Blind
Did you know? The definition of legally blind means when your best corrected vision after glasses or contacts is 20/200 or worse. In other words, you can only see something from 20 feet away what someone can see from 200 or more feet away can see. But that still means you can see.
9 in 10 people who are legally blind have some light perception. Some can even read. Here are 10 more fun facts about blind people.
Reasonable Accommodations For Persons With Disabilities
The ADA ACT, which governs the accessibility and rights of disabled individuals, states that employers must provide reasonable accommodations.
This is a somewhat broad and open ended statement. What may be reasonable to one firm might not be reasonable to another. Furthermore, I’ve spoken with many people who feel that this reasonable accommodations act entitles them to far more than it actually does.
What does the law say?
“A reasonable accommodation is any change to the application or hiring process, to the job, to the way the job is done, or the work environment that allows a person with a disability who is qualified for the job to perform the essential functions of that job and enjoy equal employment opportunities. Accommodations are considered “reasonable” if they do not create an undue hardship or a direct threat.” (Source: ADATA.org)
This is a pretty wordy and broad definition. Basically, it means that if you are qualified to perform a job, an employer is expected to make simple changes to assist you in your ability to safely and effectively do that job. It does not mean dramatically changing the job description or helping you outside of the workplace.
In my case, I didn’t ask for any reasonable accommodations when I was hired. In fact, I managed my new surroundings pretty well. However, as my eyes got worse over time, I eventually asked for a few simple things to assist me in performing my job more safely and effectively.
These accommodations for my visual impairment were:
- A backlit keyboard so I could see my keys more easily.
- A safety partner to walk with on the occasions I needed to walk out onto the shop floor.
- A CTV screen to read printed material.
- A screen reader software to read documents to me to help with eye fatigue.
- Small adjustments to my schedule so my new guide dog could get breaks.
As I became more senior in the firm, I was also able to delegate some tasks to individuals that worked for me, such as doing inventory and reviewing large documents. I continued doing most of the contract negotiations and used my expertise to help train the team as needed.
None of these accommodations asked for my job description to be changed or for assistance outside of the workplace, like getting a ride to work. (I was a pro carpooler by this time! You should try it! it’s a huge money saver.)
If you find yourself asking for accommodations, make sure to keep them specific, work focused, and reasonable. I’ve found that most people are more than willing to help you; they just don’t know what you need. If you can clearly identify your struggle and identify an actionable solution, you will probably have success in your accommodation requests.
Going Blind: Planning For The Future
Over time, my vision continued to get worse. I was already considered legally blind when I started working at the new company. I had limited peripheral vision of around 10 degrees field of view. Legally blind is 20 degrees field of view or less.
Thankfully, I’d been a saver since day one. And with this new job, I was able to max out my 401K plan and save some money in a taxable brokerage account. I also had a fully funded emergency fund of 3-6 months of expenses which would come in handy when it was time to retire.
I was becoming much more financially secure, but I still hadn’t saved up the full million I had hoped to have by age 40. It was becoming apparent I was running out of time. And quickly. I wasn’t going to make it.
Increased Vision Challenges At Work
In 2019, when I was 31, my eyesight started deteriorating quickly for unknown reasons. I could no longer read out of my left eye. Meanwhile, the tunnel vision in my right eye was so bad I couldn’t see an entire word on the computer screen. I actually got lost at work several times and had to have help finding my office.
My color vision was shot too. While I could still tell some colors apart, I couldn’t tell you if something was pink or orange, green or blue. I had also completely lost the ability to see yellow (which is inconveniently the color of highlighter pens).
I was getting slow at my job, unable to keep up with the huge amount of data I was expected to process. Large Excel worksheets were problematic for a screen reader, and charts were hard.
How do you know what the chart says if you can’t see the relationship of a data point to the axis?
I was beginning to go blind and starting to make mistakes…. Lots of them…
- Periodically emailing the wrong person with sensitive data
- Making mistakes on reports that were sent to corporate
- And struggling more and more with vendor meetings in which I was expected to represent the company
People noticed, and the company bent over backward to try and help. They hired a summer intern to help with data entry. I delegated more responsibility to my employees and moved into more of a team coach/consultant role where my deep experience in contract negotiations and military customers could be leveraged by multiple departments.
A Difficult Conversation With My Boss
Eventually, my boss and I had to have a conversation. I explained to him I was struggling and working ridiculous hours to try to keep up. I was making mistakes that cost the company money and was becoming a financial liability and not the asset they had hired.
He agreed with me and said he’d noticed but didn’t know how he could help me do my job given the new limitations I faced.
We worked out a transition plan. I would stay on for an additional three months to train my replacement. I’d be available for consulting should issues come up in the future where my expertise and history on a project might be helpful. This happened in September of 2019.
Plan B: Retiring Blind
By December 18th, 2019, I was placed on a medical leave of absence, and the disability claim process was started.
How much do I make in retirement? You might be thinking…
If you didn’t hit your $1 million goal, how on earth did you retire?
Well, that's where plan B kicked in. I had my main plan to save up a million but hedged my bets by ensuring the company I worked with had the LTD insurance policy. As a result, I have several income streams in retirement.
- Long Term Disability Insurance (LTD): $2,000/ Month
- Social Security Disability Insurance (SSDI): $2,600/ Month
- Other Income: $1,000/ month (investment income, Ebay, other)
This works out to be an annual income of $67,200 per year, much of which is not taxable. It’s a very livable amount for an individual. I own my own home with a monthly mortgage payment of $1,200/ month.
Through frugal living, I am still working toward saving that $1 million goal. I add around $20K to my investments every year. I’ll probably be closer to 50 by the time I hit my goal, but that’s okay. I have the income sources listed above secured.
Disability Benefits
This might sound like a lot of money to some people. Most people assume someone on disability benefits doesn’t make very much. They’re right.
Most people on SSDI only make an average of $1,358/month in 2022. Also, some individuals who are disabled never worked at all and are on a different program called SSI (which pays up to $886/month in 2022).
My case is certainly above average for LTD and SSDI benefits. Keep in mind that when I retired, I was making over $110K per year and had been paying into the systems for 16 years. (My first job was when I was 16).
These programs are a form of insurance to protect you in the event your ability to earn wages is compromised. The more you can make while working, the better off you’ll be should you ever need to utilize these safety nets.
Final Thoughts On Going Blind During My Career
I hope sharing my experience of going blind, how I navigated employment, and the resources I found useful at various stages of vision loss has been helpful regardless of where you are on your journey. If you're at the beginning, I’ve given you a pretty good road map to start your process.
Thanks to Financial Samurai for hosting this guest post! If you want to learn more, check out my website BlindLuckProject.com where we discuss all things financial independence and how to make your own luck despite the odds.
– Adam
Readers, do you have a disability that makes getting a job harder or doing your job harder? If so, please share your experience!
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Hello,
Very good article Adam, good job!! I understand your situation, because myself I help of the people suffering from neurological pathologies (particularly serious), because they sometimes need to be pensioned or medically taken care, but some between them are obliged to work, even if it is contraindicated for their pathology.
Good continuation at you,
Steph
Hey Steph!
Neurological Pathologies sounds particularly painful! I’m grateful for my situation as I know there are many conditions that are way worse than going blind! I’m also am grateful that things worked out ok for me!
Thanks for reading my story!
Thanks for your post, Adam! Talk about defiance and NEVER giving up! I’m incredibly grateful for your story; It’s a great reminder to stay the course and fight on despite the odds of success. It is easy for all of us to feel sorry for ourselves and give up. I always try to remember that no matter how hard you have to fight, no one cares. Most people care about themselves and their immediate families. We’ll face battle after battle in life until we win or lose the war. I love your indomitable fighting spirit. You’ve motivated me to push further each day. Stay hard! Say Strong!
Sam has a really good quote in his new book “Buy This Not that” along the lines of “you should never fail at something from a lack of effort because it requires no skill”
I think it’s a good mindset, things might not be as easy for us as they are for someone else. But our level of participation is still largely dictated by us. By focusing on what we can control we can achieve a lot :)
Thanks for reading!
Thank you Adam for the great post. I found your story to be powerful and eye opening and the way that you shared it was very well laid out and had great practicality and flow (much like Sam’s content!). Just wanted to let you know that your story is inspiring and I find it super impressive that you had so much maturity and foresight to acknowledge your situation and plan ahead at such a young age. Thank you so much for sharing.
Hi Adam, thank you so much for this post.
I was diagnosed with Stargards 6 years ago at age 44. I can no longer drive, can barely work, and my doctor advised me to start the disability application process now, but i’m trying to hold out a few more months to train folks at work.
I was 9 years into an engineering job that has/had LTD whole time. Employer has been super cool and supportive when i told them my months are numbered. However, initial meeting with the LTD insurance team, organized by my companies HR, made it clear that they aren’t in business to make this process especially easy.
Do you have any more tips on how you successfully justified the LTD claim? When you knew to start it? Did you need a lawyer?
I have lawyer-phobia. I thought i read that they take 25% of the benefit every year (this would be ~ 30k/year for me). or is this only up to some max?
if i paid 10 or 20k for this, no problem. but 30k/year terrifies me.
If anyone else has insight into involving lawyers in LTD claims, I would be so very, very grateful.
Hey Jason! I’m generally failure with Stargards, and know it’s a progressive condition such as RP is.
the Disability process can be tricky to navigate especially since their is so much conflicting information online. a few things I learned thru my process.
1) not everyone will understand, especially if you don’t “look disabled”. it’s hard for people to understand what the challenges are especially if the condition is getting worse but they can’t see it.
2) have you requested any reasonable accommodations or started using mobility tools such as a white cane or guide dog? if so this provides documentation that your condition has materially changed over time. if not now might be a good time to implement these steps
3) in my case I was well beyond legally blind when I had the talk with my manager. They knew I was struggling and I was making mistakes, and was struggling to keep up due to sever eye fatigue. basically it came to the point where it was costing the company money to keep me employees which wasn’t fair to them.
4) as for the lawyer if your doctor says you’re legally blind and your work place feels it’s impractical for you to effectively perform the job you were hired for you may not need a lawyer. I filed for LTD thru the HR office (with their support) the LTD company had me see both my doctor and one of theirs and approved me for disability. after 6 months they used their lawyer (free of charge to me) to file for my SSDI benefits. This enabled them to reduce their payout by the amount that I received from SSDI so it was in their best interest to work with me.
food for thought: blindness is a relatively difficult condition to fake, and since your condition has no viable treatment and gets worse over time you may find the disability insurance company doesn’t fight you much on it. It’s pretty clear cut (as long as the doctors feel you’ve progressed to legal blindness). unlike injured backs and other hard to detect conditions.
Hope this helps!
Sam, thank you for sharing this inspiring story by Adam. It is definitely an “out of the box” type article that is not usually covered in the FIRE community. I read it eagerly as I also have had visual issues all my life, but they are different than Adam’s. I am in my 60s now and live a great life, like Adam. Thanks for giving a platform for Adam to share his story. It can take an instant for your life to change. It is important to know you can still have a great life, even if it is a different one than you imagined for yourself. This is what I have found with my life.
Glad to hear things are good Chris.
I’m really happy to spread awareness and share different situations. We only have one life to experience.
I really just want more love, acceptance, and harmony now and in the future. It’s what I think about most since having children.
The technological advances have been helpful for those with disabilities and I am thankful!
Your post reminds us to practice gratitude. Thank you.
Did you apply for SSDI on your own? I ask because readers might be unaware of the option to hire an attorney or advocate. After being denied (not uncommon) coverage more than once, my colleague’s son, diagnosed with Huntington’s disease, hired an advocate on a contingency basis to take over the application process. Eventually successful, the advocate charged a high fee (in this case, the legal maximum 25% of backpay awarded, up to $6k; plus usual expenses, e.g., documentation).
As a fellow blind subscriber, glaucoma in my case, I want to offer an alternative view. If the objective of FIRE is to generate income by any means, then sure, Adam’s story is strategic, but I find it difficult to accept the advice as financial independence when the bulk of the retirement plan relies on insurance and government assistance. To me, that is a form of dependency on two planks whose stability relies on someone else’s policies.
The plan assumes the individual will never want to start or expand a family, that the individual will never want to move to another city where the cost of living could be higher, or the individual never makes a high ticket purchase, either because of an emergency or because of sheer personal desire.
In this case, Adam did not make the conscious decision to retire as is the case of the FIRE movement. He foresaw an inevitable failure and built a safety net to catch them when the moment arrived. To some degree, we all plan in such a way, but we plan for an eventuality where we are genuinely unable to be gainfully employed.
In this case the individual chose to give up after failing to perform basic tasks like emailing the correct person or adequately meeting the needs of their employer, two responsibilities scores of blind people are fulfilling across various industries on a daily basis. I wouldn’t spotlight this aspect of Adam’s story except for the fact I and others have worked too hard to reverse misconceptions of blind people as burdens to allow this reference to be taken as reality for all people with visual impairments.
Nevertheless, this is Adam’s story. My point here is not to take away from the formula that is working for him, but the stereotypes the advice perpetuates is a disservice to the general push to get more blind people employed despite societal devaluations.
I’m only five years older than the guest contributor. I don’t plan on retiring early. I love working and finding creative ways to maximize my income, but if I was going to retire sooner than later, I would rely on investments whose returns are not dictated by someone else’s caps.
I sincerely hope this is not taken as a personal attack on Adam. Sadly, human nature has a tendency to lump people into groups, but the perception this article promotes is not one all blind people want to be associated.
To clarify, you are not aloud to start a family or move to another city if you receive LTD? I’m assuming the payments are indexed to inflation.
Adam spent 10+ hours on this post, volunteers, and works on his site. Seems to me like Adam is doing what he wants. What does success mean to you? Because employment doesn’t necessarily mean success in my mind. Am I a failure for leaving work after 13 years and negotiating a severance? I don’t think so.
But I do see your point. The goal should be to get more people with visual impairments to get more employment opportunities. It’s just that when we talk success and length of employment, those are highly subjective.
Adam, thank you for sharing your story. Your attitude is great and I’m sure it will make an impression on your readers. Long term disability benefits are so important and yet so many people, especially when they’re young, feel that they’re invincible. I believe Social Security has stated that those who are currently in their twenties have a 25% chance of becoming disabled in some way before they reach retirement age. For me, I became disabled due to rheumatoid arthritis and other conditions when I was in my late thirties. Short term disability benefits (provided by my state, one of the few that do) and long term disability benefits (provided by my employer) were critical to my survival and my two-and-a-half-year wait to get approved for Social Security. I’m glad you are getting the message out about LTD benefits…everyone should have them!
Thanks for sharing your story and raising awareness for those with visual disabilities! Your story is incredibly inspiring and humbling. I want to give you a big high five for facing your challenges head on and finding ways to figure out your future. So many people just sit around and wait for change to happen. But that won’t get one far in life. We have to be the change we want and go out and get it.
Curious – you mention your brother also had decrease in night vision. What has his vision loss been like in comparison. Does the degenerative process vary a lot from
individual to individual? Or do most people with RP go through a very similar timeline as you experienced?
Thanks!
Thank you! I have my parents to thank for the proactive mindset in life. They always encouraged us to do everything, and when we ran into struggles never discouraged us, instead they asked “Well how can you do this tasks?” very helpful mindset to have.
I agree I have volenteered locally here in the blind community and it’s a bit disheartening to see how many people are defeated before they even try. there are many reasons for this. A lack of confidence, individuals not encouraging them, a fear of failure etc. It’s one of the reasons I share my story here, I want to show others that it is possible! maybe not easy, but very possible.
Your question about my brother is a good one, he has the same condition, while he has some vision impairment (night blindness, some narrowing of vision) he is still doing surprisingly well. He is a year younger than me but is still able to drive a car!
I’ve met many people with RP thru my volunteer work and some are 100% blind and some are still able to drive into their 60’s. Researchers are still trying to figure out why this condition is expressed so differently from person to person. (Especially among families where the genetic cause is the same)
Howdy Adam, thanks for writing this guest post. As a fellow writer, can you share the process of writing and editing this post? What are the tools you use that are the most helpful?
I think often times, readers don’t appreciate how many hours it takes to write a post. Articles get taken for granted unfortunately. So sharing the process would be insightful.
Also, I am thinking about taking my children to see every single wonder of the world before age 30, just in case as well. There are five or 10 places on my bucket list that I want to visit as well.
Sam I think taking your kids to travel the world is an excellent Idea! You never know how much time you have so you should always make the most of every moment! I’ve traveled extensively myself for the same reason.
as for the article it is time consuming to write an compelling/ informative article without a disability. It’s a bit slower for me but I make it happen!. This article probably took me close to 10-12 hours to write, edit, and review before I was happy with it)
Tools I use are:
+High contrast screen settings (dark mode)
+Enlarged mouse cursor/ inicators
+Voice Over (voice that reads text back to you)
+Key Board with backlight
+Patience! I often have to come back to something I started, what little vision I have tires easily. sometimes the best thing to do is just take a break and come back to a project.
+A good editor! I certainly miss plenty! my editor is a HUGE Help!!
Side note I prefer typing over dictation, I find there are less typos that way (at least for me)
I think the final note I’d add is don’t be afraid to try new things, if something isn’t working for you try doing it a different way or asking someone how they might do something. You have to be flexible if you want to learn new things.
Wow! 10-12 hours is great effort. And even if you didn’t have RP, I would say most people would take 12 hours or thereabouts to write this 4,000-word post. So we’ll done! And even more people don’t even bother to try!
A great editor is huge. How do you occupy your time now post work? And would you like to go back to doing another type of work?
Thank you! I can get thoughts on paper but the editor makes it look pretty ;).
I stay pretty busy enjoy working out, reading, hiking, swiming, working on creative projects such as the website etc. I used to be big into biking, so I’m looking into finding a tandem bike partner to ride with, might be fun to do some events for charity.
I’ve done a fair amount of volunteering where my business experience can be leveraged and can be flexible with my limitations. I’ve also traveled a lot this year. Been to 6 states so far this year with various trips. it’s funny I probably do more than the average sighted person, I just plan ahead and take things a bit slower. Group events work well since there are people around to help navigate when I need a hand.
As for work, I’m focused on volunteering and some side hustles like reselling on eBay which enables me to work from home and at a pace I’m comfortable with. It’s a bit tricky since I know my vision is getting worse overtime so I try to find things that I have a high likelihood of being able to do for a long time vs something short term.
Adam, Your story is so inspiring because you achieved so much by age 32. I was only starting to get my finances right at that age. I love how you were able to accept the challenges and do your best to find solutions.
I checked out your website. You’ve got a nice logo there. It was fun playing with your Retirement Date Calculator. I also like how you mentioned that spending should be thought of in terms of every dollar spent today equates to how much extra time (i.e., days) that would delay retirement by. Since I would like to spend $284/day, on average, in retirement, it’ll make me look differently each time my spending adds up to $284 and determining if it’s worth delaying retirement by a day to make the purchase. Good luck with your website!
Thank you for the kind words! I’ll admit one of the reasons I accomplished what I did by 32 was I was acting largely out of fear, when you know you’re running out of time it’s a powerful motivator. I think many people who retire early have a very strong “WHY” driving them to do the hard work.
I’m glad you enjoyed my website and the calculators are useful for you! I’m working with a programer to update them in the next week or 2!
-Cheers!
Yes on fear! Totally a big motivator for me too.
Check out:
https://www.financialsamurai.com/the-one-ingredient-necessary-for-achieving-financial-independence/
Wow Sam, reading this was like taking the words out of my mouth! The quote “never fail due to a lack of effort because hard work requires no skill.” is basically my motto!
Having a condition that is poorly understood with a lot of uncertainty can create a lot of fear in someone. I’m grateful that it was a powerful motivating force for me and not a debilitating one as you aptly pointed out in your article can often times happen.
Thanks for sharing the link, it has given me a few things to reflect on.
Thank you so much for sharing your inspiring story Adam! And thank you to Sam for bringing on such a wonderful guest poster!
I would be interested in seeing more guest posts from Adam – seems like he has a lot of interesting stories to share!
Thank you!
I’m glad my story is inspiring! That’s my goal from sharing it :).
I could probably write a book on just award blind moments!
Hi Adam, great post I’m overcoming adversity!
Can I asked you more about RP?
I have a child a 6-year old who may or may not have RP. The doc said to do the ERG test, which we don’t want yet due to anesthesia. It also doesn’t change how we will accommodate his vision at home and at school.
My questions!
Did you have an ERG? If so, when and did it help with anything?
Did you get an IEP for school? Did it help with accommodations?
I think there are many cases of RP? Are there some cases or many cases where the vision is still there until old age/death instead of total vision loss?
Do you have total vision loss or can you still see some details and light?
As a parent, what do you recommend I do for my 6 year old, who can see but has a visual impairment? What are some things I should do if money was no object?
I have this thinking in my head that we should go on great adventures and see the entire world before he turns 30 or 40, just in case there is total vision loss.
Things like paying for Uber or getting a iphone or more advanced visual tool is not a problem for us fortunately. Anything else we should get?
Sorry for all the questions!
No worries on the questions! I actually volunteer locally to help families navigate new diagnosis such as RP.
Firstly RP is relatively rare but in the blind community is pretty common. it is one of the leading genetic causes of blindness. (keep in mind many people go blind due to non genetic reason such as injury or age related degrigation).
As for the ERG I did have one done when I was 13. I was not under general anistesia during the test. it is very uncomfortable involving wired contacts to keep your eyes open while they measure brain response as they flash bright lights into your eyes.
Personally I found the diagnosis helpful as it helped me plan for my future. For example my plan was go join the Air Force so I could become a pilot. Knowing I had vision issues allowed me to pursue more productive career paths given my limitations.
As for expected progression this is a hard one. Medical professionals don’t really know much about what causes quick/ slow progression in RP. I’ve met people with RP who were totally blind at age 18, and others who are still driving in the early 60’s (though they probably shouldn’t be).
In my case I’m 35 and have around 1-2 degrees field of view (well within the legally blind categorization) can still read out of one eye (though it gets tired easily). this is in sharp contrast to my brother who is one year younger than me and still comfortably drives.
IEP:
I did have an IEP in school, main things I had provided were sitting near the front of the class room, and ensuring I had due dates of assignments written down for me. keep in mind during middle/ high school my eyesight during the day time was still quite good. Some thing to keep in mind with IEP’s is while they are helpful in school these same accommodations aren’t always available out in the real world. Sometimes it’s important to learn the skills you need to operate in a world that isn’t always as accommodative as we’d like.
Advice for parenting:
every situation is different but since you asked here are a few points I’d try to keep in mind.
1) your kid is 6 and likely has a lot of useable vision still, I strongly encourage letting them be a happy goofy kid! don’t focus on what might be hard for them, but encourage them to try and enjoy new things. I’ve seen some parents use a lot of “you can’t do that” language. Focus on the fun parts of being a kid. their night vision will likely be the first thing you notice so keep an eye out for that.
2) there may come a time things become frustrating, not being able to drive, struggling with things at night, embarrassing moments running into things. This is part of life, try not to beat yourself up too much and make adjustments when necessary. Since this condition changes over time it means you’ll have to make adjustments over time too.
3) as for assistive devices I encourage the use of new tools as needed, but don’t put the cart in front of the horse. I learned braille when I was 20, forgot all of it, learned again at 25, forgot all of it again! Since I don’t use it every day it’s hard to retain so the time learning that skill hasn’t been time well spent for me. This is true for any new skill. So I’d focus on learning new skills as needed, and using what vision is available while you still have it.
As for seeing the world and experiancing life. I fully encourage everyone to live life to the fullest. You never know what tomorrow may bring, I have friends who didn’t make it to 30 due to bad luck in life. Also keep in mind life doesn’t end because you go blind. there are still many things to enjoy regardless of your abilities.
Hope this helps! I know my advice is somewhat general, I’ve found an open mind and willingness to make the best of every situation is the biggest asset you can have.
“ Also keep in mind life doesn’t end because you go blind.”
You’re absolutely right!
For those with RP with relatively normal vision, so you know if they got diagnosed with RP at a later age as well bc nobody, including themselves, could really tell they had a vision issue?
My daughter has nystagmus, but is not light sensitive and can see in the dark and all colors. But she has lower visual acuity and she’s only 6.
So I’m just wondering how to monitor her vision in the future. We go to an ophthalmologist every nine months to check. And I don’t know if we want to do an ERG because it won’t change the accommodations we provide for her. Your last check up a couple weeks ago showed stable vision with improving visual acuity from when she was five, eg 20/125 to 20/85.
most of the people I know who had slow progressing RP found out much later in life when they started having difficulty seeing as their vision. progression worsened. often times they thought they were just clumsy or not very coordinated earlier in life.
This is starting to change as new born genetic screenings are starting to flag conditions at a very early age.
As for monitoring in my case night blindness was by far the first indicator, I really struggled in late high school/ college to navigate in the dark. I guess the best thing is if you see any difficulty in the dark or with tripping over things (a tell tale sign of tunnel vision) to talk to the doctor about ERG testing or genetic testing.
fingers crossed! in the mean time enjoy the fun years of being a kid with her :)
Thank you for sharing your story Adam. How long did you work at your new employer until you were able to receive long-term disability insurance and then leave? Was there a minimum amount of years you had to work to get it?
How are you spending your time mostly nowadays?
Hey Adit, good question. for LTD I was enrolled when I started working with the new employer the day I started. I believe there was a 30 day period where claims couldn’t be filed for new conditions (like an accident). for pre-existing conditions there was a 1 year exemption period. (this is to help prevent fraud). since my condition was known I would have been unable to make a LTD claim based on visual disability for the first full year.
I worked at the company for bit over 3 years. the last year was when my vision saw the most rapid deterioration.
I’m very lucky, I cut it pretty tight, I should have sought employment with a firm with LTD benefits much earlier in my career
Do you think insurance companies will try and change the rules for those who can gain LTD insurance?
3+ years is a respectable amount to work for your company. And nobody knows the future!
It’s hard to say. I’m not a legal expert but I think the core observation here is my condition materially changed over the period of employment not the initial diagnosis. Without significant change in ability the insurance company would likely argue you were not “functionally disabled” if you were able to perform the job with the pre-existing condition and there has been no change, you should still be able to get the job done.
Another way to look at it is what if someone doesn’t know about their pre-existing condition (such as a heart defect) and it becomes functionally disabled after many years of loyal employment, should that person be precluded from a LTD claim because the condition was technically pre-existing?
I’m sure there will be some changes to help fight fraud. Hopefully the protection to honest hard working people with pre-existing conditions remains intact.