Why FIRE is a Necessity, Not a Luxury

Brainzzz

When someone meets me for the first time “in real life,” “Disabled” is probably not the word they would use to describe me. Yes, I’m a bit eccentric. I say weird things and probably offend them a few times throughout a painful 2 hour encounter. But Disabled?

I don’t use a wheelchair, I don’t wear a brace. I walk, talk, and move around like anyone might expect a person without any disabilities to do. I work full-time (some might say a lot more than full-time), and live independently in New York City. I do my own grocery shopping, cook for myself, socialize with friends, and get around by walking or using public transit.

So how am I possibly disabled? You might ask. You seem to be functioning pretty well. You’re right. I do look pretty non-disabled.

But the issue is, my disabilities are there. They’re just shielded from your view with drugs, accommodations, and a lot of gritted teeth.

And whatever “normalcy” I can glean from my daily life is temporary. There’s no knowing when I’ll no longer be able to keep my facade of a “normal person” up. And this fact frightens me to death.

I’m a millennial woman with both physical and invisible disabilities. And I am relying on Financial Independence to save me from a catastrophe.

Disability

Merriam-Webster defines “Disability” (noun) as:

  1. a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability engage in certain tasks or actions or participate in typical daily activities and interactions
  2. also: impaired function or ability

Disability is Impairment to Functionality

Everyone can become “Disabled” in one way or another, depending on the situation they are put in. For example, if you put a life-long farmer into a city, he’ll probably have quite a bit of difficulty figuring out how to find a place to live or a job. If you put a city teenager in a desert and told him good luck, he’ll probably not thrive for too long.

You could put a corporate lawyer in a sushi restaurant’s kitchen, and he probably won’t be able to whip up tonight’s omakase special. If you put an engineer in a kindergarten classroom and told her to teach the class how to count, she’ll probably be a little stumped. If you were suddenly in a country where no one speaks your language, your daily life is going to be impaired.

We all tend to migrate to occupations, locations, and communities where we are functional and our abilities align with what the situation offers.

Being Disabled doesn’t mean you can’t work. It just means that you are unable to do certain activities or functions that others may take for granted, which are necessary in certain situations. But it’s also possible to accommodate for many of the “impairments.”

I have Many Impairments

I have many impairments. Some were temporary, others are still there. Some are hidden, others are accommodated for. Over the years, I have found and created for myself an ecosystem that helps to turn my “impaired functions and abilities” into “functionality.”

For example, I cannot drive. Well, I can. But it takes a lot out of me to drive, because of my Executive Function Disorder. I become easily overwhelmed by the amount of stimuli coming at me and the pressure to be paying attention everything. It’s probably a matter of getting used to, but because of my Brain Surgery at 22, and recovery period that took me to 24 to even touch a wheel, I never got to feeling comfortable with driving. So I live in New York City, where I don’t need to drive. And it doesn’t detract from my quality of life to not be able to drive.

I also have Chronic Fatigue, which comes and goes. It makes planning my life difficult when I am flaring up, because I tend to need to spend the day sleeping or resting. I have a job with unlimited sick days to accommodate for days I am not feeling well. On a similar vein, I have a lot of doctors’ appointments because of my various medical conditions. The unlimited sick days allow me to take as much time as I need out of my Full-Time job to go to my appointments without ever having to disclose WHY, or getting into an HR snafu for missing so much time.

Recent MRI of my brain. You can see the top right is Gray/Black – That area of my brain is “dead.”

I have Brain Injury from my brain surgery, which means something like 1/8th or 1/6th of my brain is “dead.” That, naturally, causes quite a few issues.

The Executive Function Disorder and Chronic Fatigue also make it difficult for me to do many Activities of Daily Living (ADL) when they are “flaring up.” This can range from grocery shopping to cooking to laundry to cleaning my apartment to taking out the trash. Driving would be one of them as well, if I didn’t live in a city. Living in NYC means that I can order food quickly or take a 5 minute walk to pick something up. I can drop my laundry off at the laundromat to have them do it for me. My apartment is small enough that a bit of tidying here and there can mitigate my need to vacuum every week.

I live in a “city that never sleeps.” It’s normal for someone to be doing a million different things at the same time, and to create a hodge-podge identity for themselves, hustling all the while. This fits my Executive Function Disorder well, as it means I don’t have to force myself to conform to the community by picking one thing or one career. I have ample opportunities to pursue whatever I want, whenever I want, at whatever capacity I am able to provide.

During the half year when my Chronic Pain and Rheumatoid Arthritis were running wild in my body, I could barely move or sleep. But I was able to continue working because I did not have to drive to work. I could hobble my way to work via public transit, and had the unlimited sick days to go to every doctor I can find until I could get a diagnosis and treatment.

Living in NYC also meant that I was actually able to get the medical care I needed in my back yard. If I lived in a more rural area, it could take me hours of driving to get to a specialist who could help. For me, it’s a 30 minute Lyft ride away to get to Columbia Medical Center, one of the top hospitals in the country.

Because I have memory issues and organization issues (hollah, EFD!), I have Google Calendar keep all of my appointments, and Bullet Journal for all of my notes. I keep a One Line a Day diary to write down my days because I probably won’t remember few days down the line. I cannot survive without my smartphone and Google Calendar. It is the Keeper of the Truths. I don’t make it to appointments or social meet ups if I misplace it on the calendar.

I am a fabulous note taker and Technical Writer because of this, which has served me well both as an IT professional in writing technical documentations, as well as being recruited to do Technical Writing as a profession.

I work at a tech start up, which is much more flexible than many old school companies. We have the ability to more or less “pick our hours,” and work remotely. Having difficulties with exhaustion and chronic pain, I often work from home to remove myself from the need to commute for 2 hours every day, wasting precious energy I could be using to be productive at my work.

Whatever “Disability” or “Impairment” I encounter, whether it be locked and swollen joints, cognitive impairments, attention deficits, mental illnesses, chronic pain, or chronic fatigue, I’ve found ways to accommodate for them so that I can continue living my life.

Some require technical aids like Google Calendar, while others require medical interventions like chemotherapy drugs.

I mostly credit my ability to do this on my 6 years of training as a Special Education teacher. I spent over half a decade learning how to accommodate and modify curriculums and Activities of Daily Living to make everything accessible for kids who have differing degrees of needs. I just happened to have joined their ranks.

So I am in a city where many of my deficits are not noticed because they are not required for me to live a full and fulfilling life. Move me to the suburbs, and my life and self confidence will probably crumble, and I will become as Disabled as my original state.

Disability and Financial Independence

So what does all that have to do with Financial Independence? Basically, I’m banking on attaining Financial Independence so that I can have enough financial security to rest when I need to, work when I want to, and retire if the need arises.

When I was diagnosed with Rheumatoid Arthritis, I realized that my lease on relative health was up. I had a few good years after my Brain Surgery where I was feeling almost “normal.”

Whatever deficits I had, I had managed to accommodate for. Whatever I couldn’t accommodate for, I changed my lifestyle to exclude the need to do those activities. But becoming diagnosed with an extremely debilitating condition that attacked my physical capacities was a wake up call.

I can’t “accommodate” my way out of severe chronic pain and inability to move any of my joints. And the pain level was such that I often contemplated just chopping the affected limb off.

Reality quickly set in that I might not have the luxury of “Working Forever” that everyone jokes about. I could be disabled enough TOMORROW to have to exit the workforce… Forever.

If I couldn’t work and make a living, I would be bankrupt in no time. I couldn’t afford my treatments, doctors, apartment, or cost of living. I couldn’t afford to be alive with a disability that prevented me from working.

Even though the oral chemotherapy treatment worked, and I regained much of my mobility, I knew that I was on leased time. I had to make sure I was sufficiently prepared for my potential inability to work.

So I am on this Financial Independence journey, more because of necessity rather than for Retiring Early. I need to have the option to take breaks when my body demands it, and change my working schedule or style to fit my body’s needs. All of this need to happen without causing financial insecurities for me.

So I am plugging away now, trying to build up as much passive income and assets as possible, while creating a life where I can adjust and scale my professional life to meet my body’s whims. Only when I am financially secure enough could I take the risks related to taking time off or scaling back to part time or contract work to take care of myself.

The idea of FIRE is nice. Reading on the hammock in your backyard while everyone scrambles to get out of the house at 8AM on a Monday morning, bleary eyed, gulping down coffee. That sounds grand.

But for me, it could very well be a matter of life and death to attain it.

Comments

  1. APurpleLife

    Wow. You are so inspiring. This is the best explanation of how disabilities affect people that I’ve ever read and of course it makes total sense why you’re pursuing FIRE. I’m excited to cheer you on during your journey.

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      Zero

      I constantly oscillate between whether I can claim the identity of being disabled when most of my daily life isn’t limited in any real way. But at the same time, I’m only unlimited in what I can do because of all of the modifications and accommodations I’ve made for myself in my lifestyle and ecosystem. It’s a strange place to be in! A wheelchair using lady who has freedom to go wherever she wishes and have bitching career, is a wife, mother, and everything she wants to be would still be considered “Disabled” because she has a visible physical disability. Even though in her day to day, she isn’t limited by much because she’s “figured out” how to make things work to accommodate for her various limitations that may come with the fact she can’t walk or needs to use a wheelchair. But she uses a wheelchair as a tool, much like we use cellphones as a tool in many ways inconceivable just a decade ago. Anyways, let’s kick this FI(RE?) thing in the butt!! 😀

  2. Moriah Joy

    Your commentary on disability is soooo crucial. Some people don’t look like they’re disabled, but it’s not our place to judge. My mom has Behcet’s Disease, which put her in a wheel chair for a while, but before that, we still had a blue placard to park in handy cap spaces, because she couldn’t always walk well. I remember one time she and I were loading groceries into the back of our van, and it was a good day for her, so we didn’t need the walker or the cane that day, and some guy came up and spat on us because we were “illegally using the handy cap space and how dare we take that away from someone who really needs it”. And that moment has really stuck with me because she DID need it… he just couldn’t see that she did. A lot of “invisible” disabilities are discriminated against because they’re not “disabled enough”. IE if I can’t see your disabled and pity you for not having a good life (we got that a lot too, when she was wheelchair bound), then you shouldn’t be claiming you’re disabled. It’s stupid. So thank you for the gentle reminder that disabilities come in MANY different forms.

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      Zero

      My god. I’m SO sorry she had to experience that. But it’s so pervasive. It happens everywhere, and has happened to me many times in forms of being bullied out of my seat on the bus/train/etc. because I’m young and how dare I be sitting down when there’s someone else more worthy. Meanwhile I’m barely able to stand, dizzy with pain from arthritis, or nausea from a migraine. But they can’t see it, and so it must not exist. It’s so sad that the little “good” days we have have to be ruined by people who judge ignorantly 🙁 It’s like we have to continue acting “disabled” in order for the world to believe us that we are disabled, and we can’t have any good or nice days or fun… Thanks so much for reading! 😀

  3. Gary @ Super Saving Tips

    Thanks for having the courage to share your personal health info and how it affects your desire for financial independence. It’s an important perspective and one we don’t hear about very often. My wife is disabled–she has rheumatoid arthritis, fibromyalgia, and degenerative disc disease. Unfortunately she hasn’t been able to work for a number of years now (and I retired at age 62 with health problems of my own). Of course that affects our finances, and we’re managing, but it’s an effort especially when you consider our healthcare expenses. I wish we had both been a little bit better with our finances earlier in our lives so that we could have been more prepared. I think you’re very wise to pursue financial independence and I wish you the best!

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      Zero

      Thanks for sharing you and your wife’s story, Gary!! Your wife’s conditions sound absolutely painful 🙁 I’m “glad” I got to start my journey so early, but it’s still sad sometimes that I have to be worried about these things in my 20’s instead of later in my life! My health has really defined my life.

  4. Fretful Finance

    Here in the UK, London Underground issue people with hidden disabilities these blue badges that say “please offer me a seat” so they don’t have the awkwardness of having to ask for a seat on the underground/subway when they don’t “look” disabled.

    The underground is completely exhausting, especially at rush hour – I feel stressed and knackered just travelling on it for 10 minutes, so I think the badges are a really good way of making sure disabled people aren’t shut out of certain work purely because of the commute.

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      Zero

      I think Japan has a similar thing! I don’t know how much it’ll work out in NYC. People can be on wheelchairs and no one would get out of the way… Hahaha. We DO have Disability/Pregnant Women seats, but it’s generally taken up by able-bodied people… THOUGH I guess the whole point of this post is that you don’t know! 😛 It’s so hard to figure these things out, but the trend in NYC is to get rid of seats to make more standing room, and that just makes it really difficult for us to sit down. I don’t know why we don’t do more of those “flip down seats” that I see in Europe all the time… When it’s super crowded, people can stand. When it’s not, you can flip the seat down to sit down!

  5. Michelle @ FrugalityandFreedom.com

    Thanks for sharing your personal experience of disability and a very compelling reason to pursue FIRE! I felt exhausted just reading it, so I am so impressed that you maintain such positivity and prolificness in your social media and new blogging presence, along with doing all the things that work, life and health management in NYC involves. Keep it up.

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      Zero

      Thank you so much, Michelle!! 🙂 It’s definitely been a journey, but now that I’m mostly on the “better side” of it, I’m glad I had them to teach me a lot of things that words and mere warnings really can’t convey!

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