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