Everyone Loves a Snow Day

I went to bed last night thinking the predicted storm might not be so bad for us. The meteorologists were calling for heavy wet snow for the nearby Catskill, Adirondack and Berkshire mountains – over a foot. But as of 10 PM, we were only supposed to get 2-5 inches.

Here’s what it looked like at 8 AM. When my Personal Assistant left, the snow was over her shoes. Side note – she’s a gem for driving here at 5:15 AM to get me out of bed and showered on days like this. She never calls out due to snow.

My office was closed today because the building lost power due to the storm. Even though it’s been 23 years since my last days as a full-time student, I am young enough to appreciate a snow day. Especially one I did not expect!

So far, I have been fabulously lazy. For the past 4 hours all I’ve done is crochet while binge-watching episodes of Bondi Rescue on Netflix. Yes, I know, it’s crap reality TV. But it’s sunshine, blue water and Australian (mostly shirtless) life guards. When this is the current view outside, I’ll take mindless sun and surf any way I can get it!

Winter scene of heavy snow on an apartment building with cars parked in a lot.
That’s my van Clyde buried under the snow.

How about you? What’s your favorite snow day activity?


30 Days of Thanks Day 20: Warm Feet

I live in the wrong part of the country for my body. Because of my poor circulation and low muscle mass, I am always cold.

OK, maybe not ALWAYS. When I’m in the therapeutic pool, or in the shower, or when I first wake up in the morning, I can feel my feet. But within ten minutes of getting out of bed, my feet are blocks of ice unless the air temperature is above 80 degrees Fahrenheit.

From November through April, I usually have a fleece blanket over my lap all day long in an attempt to maintain feeling in my legs and feet. Most days, I’m lucky if my feet don’t completely freeze before I get to work.

The cold makes it more difficult for me to move. The pain of cold feet makes me more cranky. I tell everyone, “I’m pretty much miserable from November through April.”

Sure, I could move to another area. But there are many good reasons to stay. Reasons like good home and community based services, family, and my support network. So I stay and do my best to be as warm as possible.

Today, I had warm feet for almost the entire day! Not because it was warm here, but because I was able to shut myself in my office under my blankets.

Warm feet may not seem like a good reason to write a gratitude post. However, it’s the best reason I have tonight.

Redefining Disability Challenge – Question 41

Each Wednesday, I post my response to a question from the Redefining Disability Challenge. This is my response to the forty-first question in the Challenge. As usual, I am not looking ahead to future questions, so I may inadvertently address some topics which will come up later in the Challenge. Here is this week’s question:

Free post day! Write about anything on your mind today. Any topic that the series doesn’t cover, anything going on in your life related to disability, something you’re excited for, something you’re frustrated about.

I hate winter weather. I despise being cold. It causes physical pain when my feet get cold, and they are almost always cold from November to May each year. I dislike having to drive in snow with other drivers, most of whom never seem to remember to be cautious. I can’t move my arms if I have to wear bulky sweaters and jackets. Every movement requires more energy and takes more time.

My friends and family know I hate winter. I do my best not to complain. However, it is a safe bet I will put on a bright face in public yet privately curse the cold in my head for months on end. I spend far too much time and energy being miserable about something I cannot control – a behavior I routinely advise others to avoid.

Why do I stay in upstate New York where I am miserable due to weather for six months of the year? Wouldn’t it just make sense to move to a warmer climate?

I stay in New York for many reasons. My elderly parents live in New York, and I like being able to get to them within a couple of hours if needed. Most of my other family members live in New York, and they are part of the support network I rely on to live independently. But the main reason I continue to live in New York is because my disability requires me to use personal assistance to be independent, and New York has one of the best consumer directed personal assistance (CDPA) programs in the United States.

As I have mentioned in prior posts (you can find three of them here, here and here), I rely on the Personal Assistants I employ through CDPA to perform daily tasks most nondisabled people don’t think about. Each day, these dedicated women get me in and out of bed, help me on and off the toilet, assist me with showering and dressing, style my hair, prepare my food and clean my house.

If you required this level of assistance to meet your basic needs, and could not afford to pay for them out of pocket (private health insurance does not pay for long-term home care), you would want to live in a state with good services. I have decided to tolerate single-digit Fahrenheit temperatures and below-zero wind chills because I do not have $50,000 to spend on my personal care each year and I want to have control over how and when I receive my care.

In the United States, most people who require long-term home care rely on Medicaid to pay for care. Some states do not offer self-directed services to Medicaid recipients. Some states have waiting lists for home care, forcing people to remain in institutions. Some states limit the number of hours or care a person can receive. Most states limit the amount of income a person can earn and still remain eligible for CDPA through Medicaid.

New York has a comparatively generous Medicaid Buy-In Program for Working People with Disabilities. As a single person, I can earn almost $60,000/year and still remain eligible for CDPA. There are very few states which permit that level of income while retaining services.

I am not saying New York is the best state in the nation. There are many reasons to want to leave. But when it comes to how I live my life, there are many reasons I stay.

Even if it means another day of freezing cold. Spring is only three months away. I can make it.

Unless I win the Powerball tonight. Then all bets are off because the meteorologist just said it is 6° Fahrenheit this morning and I’m cold.



Snow Day!

Snow DayAs I said on my Facebook page today, I don’t care how old you are. When the phone rings at 6:00 AM, on a Monday no less, telling you it’s a snow day – you get excited!

I grew up in upstate New York. It snows in winter. We all know this, and we live with it. It doesn’t mean all of us like it! Sure, the trees look pretty with a new frock of fresh snow. But have you ever tried to maneuver a wheelchair through eight inches of the powdery fluff? And heavy wet snow is even worse.

Why don’t you move? Nothing is forcing you to stay in New York!

I hear these questions often. I stay because of family, and because New York provides me with a generous personal assistance program which I require to live independently.

And, if I’m being honest, because I like the occasional snow day.