Normal

normal

Normal (adjective)
conforming to a standard; usual, typical, or expected

I’ve always wondered what normal is and why anyone would want to be it? Normal always sounded so boring to me. And normal as compared to what? Is it what society says is meant to be normal? And at different points in your life there are different normals.

I remember back after I was diagnosed and so, so, so sick. The bargaining started. If only I could be my former self again. I don’t remember ever mentioning being normal.

Since COVID-19 slammed into the U.S. earlier this year, people have been talking about getting back to “normal,” but I think it’s really about stability. Humans are creatures of habit. We crave thinking that we have everything under control, when it’s really the illusion of control. We crave whatever version of normal is our own.

When you’re diagnosed with something like MS, life, which is already uncertain, has a bit more thrown into the mix. And good, bad, or other, the general population is getting a glimpse into what it’s like to live with a disability or our “normal.”

I have extreme heat intolerance, and I don’t mean like “oof it’s hot out.” I mean, if I go outside when the temps get to around 75F with humidity, my brain starts to not work properly. Or if I’m home and the building heat kicks on at 60F, I need the a/c on. So I’m largely indoors from May through September, with odd trips out here and there. My car hire bills for hot weather months might as well be a car payment and insurance.

Had trouble getting food delivered during the pandemic? Think about the elderly and disabled during regular times and compound that by 1,000 during a crisis. People who aren’t able to easily go to a market were frozen out of online delivery for weeks. I watched this unfold on Twitter re: people with cancer, MS, and other acute and chronic illnesses.

The Americans with Disabilities Act (ADA) passed in 1990, and yet companies are still not held accountable, after 30 years. People with disabilities have been looked over for jobs since the dawn of time, but literally overnight, we shifted to work from home for most of the corporate world, and suddenly, technologically, anything is possible (and in reality always has been). In theory, the “new normal,” should open doors for a lot more people. I only hope it actually does.

If we go back to the way things were, the lesson has been lost.

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New York City

Roof viewphoto: from my roof 

 

NYC (noun)
New York City comprises 5 boroughs sitting where the Hudson River meets the Atlantic Ocean. At its core is Manhattan, a densely populated borough that’s among the world’s major commercial, financial, and cultural centers. Its iconic sites include skyscrapers such as the Empire State Building and sprawling Central Park. Broadway theater is staged in neon-lit Times Square.

You’re probably wondering what NYC has to do with multiple sclerosis? Well, it’s the epicenter of COVID-19, both in the U.S. and now…globally…and where I’m from (yes, Manhattan, native in my blood & heart) and live, on my own.

I’ve worked from home for several years and while this part isn’t a big change for me, like it is for others that are now, the difference is I break that up by actually GOING OUT. Going out to eat, the movies, exercise, concerts, travel, see family & friends, and shops.

People have asked if I’m lonely, and probably not so much, although I’m a hugger, so I do miss those. Considering I haven’t touched another person in a month. I’m fairly certain living by myself has not only kept the CV away, but also keeps the MS at bay. And I haven’t thrived with MS for the last 12 years to be taken out by a virus that truly is…stupid.

I’d say the City (Manhattan) is probably half empty with so many people leaving for second homes (definitely only 1/3 left in my building).  I have friends that work at the local hospitals, and it is as bad as the news is saying, but even with that I couldn’t imagine leaving. Even with the dystopian nightmare that is happening, there is also hope.

There’s really nothing like a NYer when it comes to banding together, helping one another, and fixing the damage in the aftermath. If you haven’t read the Michael Schulman interviewing Fran Leibowitz [here] it’s really worth it. And I was saying it before the article came out!

I’m so thankful (and, I know, privileged being safe at home) for the essential people working out there across all industries: local farmers that keep the food supply going, truckers, grocery stores, environmental services in the hospitals, food delivery, caregivers, drug stores, cable & phone, and everyone else that deserves better than society has done for them historically.

While the billionaire companies have their hands out for money from the government, that they don’t even need (and they chastise every day people for doing it). Billionaires aren’t the ones doing the work keeping the country running, every day people always have, and always will.

I would like to think that things will change after the thick of the crisis is over, I am skeptical, but would love to be proven wrong. People need living wages (based on where they live), universal healthcare (access to HCPs included!), and proper vacation and sick leave. In just about every other western country, these are a right, not a privilege.

Please be safe, wash your hands, stay home, and let’s steamroll that curve! Alicia Keys got it right…[here].

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