Tea, letters, and other creature comforts…

Is there anything more comforting than a hot cup of tea on a cold snowy night?

Dan and I live on the third floor of the victorian home in capital hill. Our spacious yet cluttered room is filled with all manner of cozy artifices. We have several rugs thrown Arabian Nights style on the floor, our walls are covered in paintings, photographs, and the banner from our wedding. We have piles of pillows all over the place. (Dan claims I have a pillow problem, I assure you that what I have is pillow solutions.) We have a lovely faux-cast iron fireplace that sends warm waves of heat and fire-like flickering into the room. We have a cat and a dog and a collection of beautiful quilts. However, things didn’t become perfect until we added an electric teakettle and a collection of tasty teas.

Suddenly we had a lovely cold-water flat to curl up and spend the wintry days in. As a result I, a vouchsafed gothic novel fanatic, am now obsessed with writing letters in my little flat while drinking a hot cup of tea. So much so that I have discovered drinking enough peppermint tea in a day will actually cause you to sweat tingly peppermint sweat. I have also sent out about 15 letters.

I am finding the creature comforts aforementioned more essential than ever lately. I am scared about the next four years. I have worked so hard my entire life to open rights up to everyone and to save the environment and now, at my most vulnerable time, the country is reverting to old ways.

I don’t want to start a big rant at the moment about politics. If you don’t know why we should take care of people who need help by the time you are reading this blog than I can’t teach you that, nor will my words change your opinion about it. You either have compassion and empathy and the ability to care for others or you believe the world is a small pie and you have to get the biggest slice possible by taking crumbs away from others. So I am not going to start a big argument. I am just going to say I am scared because it seems from my corner that the country was just taken over by a group composed entirely of crumb-grubbers.

So I am marching in protests and writing my elected officials and drinking the hell out of some tea in a room that feels more and more like a good place to hide refugees in the coming years.

Whoops. I guess some additional political commentary slipped in after all. Back to the comforts.

For some reason I think there aren’t enough people writing letters these days. I think it’s important to write in pen and ink because there isn’t a convenient backspace key ready to erase poorly thought out phrases. Think about how different political discourse today would be if people had to think before writing, to insure they meant what they said, and then had to wait 3-5 days before someone could read their writing and reply! There would be so much more thought put into our conversations.

I am trying to bring letter writing back into my life. I think it’s vital to our ability to think to correspond with people. Our social media existence has created such an instant gratification “communication” sphere that I’m pretty sure prohibits any actual communication and I believe we are suffering as a result. I’m hoping by writing people I can redevelop the thought processes utilized in actually contemplating the placement of permanent words onto paper. The actual art of communication.

On this note, yet politically, I have purchased 120 blank postcards so I can send postcards to Congress expressing my political opinion on all matters going forward. I figure I can write “Support HBXXX” or “Oppose SBYYY” on the front and then write a brief set of reasons on the back and send them in. Personalized postcards for political action without much cost or time.

I fear Congress pays about as much attention to phone calls and emails as they do syphilis. I’m hoping the physical nature of postcards will be more attention grabbing. Like face herpes.

(Dan just told me that it’s disturbing that face herpes is a theme of mine. I am afraid I can find no fault with his assertion so I will simply raise my eyebrows and drink some tea instead of responding.)

Where was I….? Right! Postcards to Congress. I loved that so many people came together in the largest single day of protest in U.S. History to combat the hatred pouring out of Washington like snot out of a toddler but let’s face it; unless we do more than march things are not going to change. Hell, even if we do more than march things might not change but we have to try something.

I suggest writing your Congress people, voting in the midterms (FUCKING VOTE IN THE MIDTERMS PEOPLE), and volunteering to spread information and garner support for causes you believe in. Even if you give an hour a month that an hour more than they had before.

We have a choice. We can hide in our cold-water flats drinking our tea and pretending the world outside isn’t there or we can find comfort in our cozy things while we gear up for the long and arduous battle ahead. I admit the former is tempting as hell. This Spoonie is damned tired of fighting to get out of bed everyday much less change the political climate of a country experiencing a mid-life crisis. However, I am afraid if I don’t put forth the effort the country I love will become a place I cannot live. So effort it is.

For right now? Tea, Letters, and the love of a snugly dog.

The Art of Illness…

There is nothing easy about living with chronic illness. It’s like being in an abusive relationship that you can never leave. You are held back from accomplishments by your own body and slowly the pain and struggle turns you into to someone you don’t even recognize.

One of the things I have learned about living with chronic pain is that it is absolutely necessary to find out what it is you can do with your life, instead of constantly mourning what you cannot do.

Don’t get me wrong. Take as much time as you need to wallow in despair. Your life as you knew it is over, the person you were is dead. There is no getting back to her. Period. Be sad, be angry. Take time out from watching every healthy person around you live a normal life. Feel jealous. Find fellow spoonies who can fully understand you. Once you have cycled through the grief process figure something out to do.

I, for example, took up silversmithing. I cannot practice law with a constant headache, nor can I live the “low stress” life mandated by my doctors while trying to maintain a legal career with a significant disability. Law and stress go together like breathing and life. You simply can’t have one without the other. So I said goodbye to it. I cried, I mourned, and I watched jealously from the sidelines as my lawyer friends won cases and got promotions and built the careers I had worked so hard to join them in.

Now I make art. I make it when I feel well enough to make it. I sell it in the gallery I work in 5-6 hours  a week. It is all I can do, but it’s not nothing. I am talented and capable and I make truly beautiful things. I am an artist, not an ex-lawyer. A creator, not a victim.

I have a positive identity that fits with the person I have become.

So go to art school, take music lessons, learn to sew, dance if you can stand it, teach yoga, write letters to the editor about disability issues facing our country, open an online store and start drop-shipping, do anything you can to grab a hold of your possibilities amidst all of these restrictions.

There is an art to being a spoonie. It’s not just about finding ways to engage socially or deal with medical frustrations, it’s also about carving out space for yourself within the confines of your condition. It’s about finding ways to create and inspire and succeed instead of only finding ways to deal with loss and failure.

We are broken. Our bodies beat us up everyday for the dumbest of reasons; It might rain later, we slept in half an hour longer than usual, it’s a Tuesday, we ate an olive. We can’t pack a bag and leave ourselves so we have to find a way to thrive in a hostile environment.

It takes patience, it takes wisdom, and it takes courage but it is so worth it. Each time I make a ring I have physical proof that I still bring something meaningful to this world. Every time I feed my family I am aware of my contribution. Each post on this blog shows me I still have relevant things to say.

So join me, find your new passion, and lets begin building something out of this fallen house of cards.

What’s next? Debtors Prison?

In a sickeningly gleeful attack on everyone in the country the Republican Senate began the grisly dismantling of the Affordable Care Act on Wednesday January 11th. It happened quietly, while most of America slept in their beds, visions of tax cuts dancing in their heads. They snuck it into the budget, rather than attempt to write and pass a new bill overturning the ACA.

Why did they sneak it into the budget? Because a bill faces Democratic filibuster, requiring 60 votes to overcome. The Republican Senate only has 52 seats. So instead of trying to work with the other senators that represent the rest of this country they instead cut federal spending for the program with only 51 votes, using a “reconciliation directive” within the budget.

In other words, the slimy cowards snuck the change into the budget instead of arguing new legislation in front of all of America.

Democrats offered a number of amendments to the resolution to attempt to save parts of the ACA  but each one was voted down by Republicans.

Thanks to the Republican party insurance companies no longer have to cover “pre-existing conditions.” Sorry cancer patients, those with diabetes, each and every spoonie out there and anyone who ever gets seriously sick ever. You cannot get private coverage anymore. Thankfully Republicans voted to increase taxes to cover the additional cost of emergency room visits caused by millions of uninsured Americans — OH WAIT. THEY DIDN’T.

Republicans voted to terminate federal aid to rural hospitals, insuring all the Americans in rural parts of this nation will be unable to access emergency services and therefore inadvertently putting a term limit on their own careers. Without emergency care in rural areas the Republican voting base will die off faster now, but that’s ok, they voted for these people so clearly this is what they wanted to happen.  It would seem the Senate is just as short-sighted as the people they claim to represent.

Republicans killed the Children’s Health Insurance Program, a program which provided children with health care so that they didn’t grow up to be chronically ill adults without any insurance thanks to the pre-existing conditions rule. By doing this the Senate has assured a consistent increase in the number of Americans who can only receive care at free clinics and emergency rooms, further straining our State and Municipal governments.

Republicans voted against the rule saying you can keep your kids on your private insurance until they’re 26. Happily they voted to raise taxes and increase federal funding for colleges so America’s young adults can get insurance through school. OH WAIT, yeah, I know – old joke. They didn’t.

Republicans reduced funding for Medicare and Medicaid as well. It doesn’t matter how hard you have worked in this country, when you are retired and old you should know that you better have saved enough in retirement to pay for your medical care, cause we ain’t gonna.

The Republicans have yet to offer a replacement for the ACA despite claims that they intend to do so. Interestingly President Trump, once again not understanding how our government works, has promised that he has a replacement that will be in place “probably the same day, could be the same hour” as the repeal. As the Republican Senate cannot just slip a new Healthcare Act into the budget they will have to get the 60 votes necessary to pass any plan Trump will offer. Democrats have been clear that they will fight against both the repeal, and the replacement, as neither is in the best interest of the electorate.

So welcome to the new America. If you are wealthy, you’re likely going to be just fine. For the rest of you who felt that somehow you were improving your life by restricting intelligent and inexpensive preventive health care for millions of Americans you haven’t. What you have done is make sure that all of these people are going to cost our hospitals millions of unrecoverable dollars.

Welcome to America, land of the sick.