On Getting What I Want

On a rainy day in London on Portobello Road, I tried on the most beautiful blazer that I ever had my hands on. It was so beautiful, it hurt not to buy it. Even though the shopkeeper told me how cute that you are wearing your top backwards! Which I was not and PS I had bought it in Paris. Then I think he called me fat. Who cares? I would have bought it if I could have afforded it. I am very focused on getting what I want and not letting idiots distract. Besides, I take all insults as compliments. I even admire a little bitchiness.

Rainy day in London on Portobello Road.

Rainy day in London on Portobello Road.

I had blown a lot of money on that trip. This blazer cost many euros. Sometimes you cannot ask your husband to spend more money on you. Yes, I am a “kept woman,” a term I prefer over “disabled” or even worse “challenged” or “battling.” Ehlers-Danlos has been a nightmare of disability and suffering that has ruined my life. Poor use of words will not change that. It is all too painful for me to talk about. I will just expose myself on the internet instead.

In that shop on Portobello Road that day, I put the style and size in my phone. I considered taking a pic of me in it, but I thought it would have been tacky to ask, even though the shopkeeper had insulted me twice. I try to be a lady. I left London without that blazer. Sad. But I have faith. And focus.

I have an entire closet full of blazers. Every now and then I cannot match one to my outfit and I realize I need more. Don’t judge me for being shallow and vain. Those are my personal development goals. 

Protected from light and dust, and room to breathe.

Protected from light and dust, and room to breathe.

For me, a blazer is a medical necessity. Looking sharp in a blazer, everyone will treat you better. I do not feel well, and I need every advantage I can get. This is not slob-shaming — excuse me, athleisure-shaming — it is simply human nature. Dressing well is a courtesy to others, as they have to look at you. It says that you respect another person enough to put on grown up clothes that match. It also suggests that you are sane and responsible, which is above and beyond simple adulting. I earn my better treatment, now that I am well enough to put on grown up clothes. I used to have no choice but to dress like a slob because I was so ill and in so much pain everything hurt, including clothes. Dressing well for everyone and no one is my private celebration of health.

Also, I am a very flimsy person. Thin skin, low blood volume, fragile, weak. My nervous system has a terrible time maintaining my body temperature, which seems to be a factor in my frequent illnesses. For you, if you are a normal person, to get as cold as I can, you would have to sit naked in the snow for a while. And, no, I do not stay warm enough with a sweater. I have a drawer full of silk undershirts, too. Must escape pneumonia!

You would not believe how little I paid for all of my blazers. Other than my bespoke ones, most were on clearance. You must go to Sam’s Tailor and have something made custom, if you are lucky enough to ever get to Hong Kong.

Fitting at  Sam's Tailor , Hong Kong. That was fun.

Fitting at Sam's Tailor, Hong Kong. That was fun.

I do not think collecting blazers would be as much fun if I had an unlimited budget. I cross my fingers and chase them down, like my J Crew blue corduroy size zero tall, which I waited for and waited for and finally got as a super super deal. Was that ever a find! J Crew does not make many blazers in tall. I am a peculiar size with my deformed, long, narrow skeleton: a tall petite. 

I have faith they will come my way. I get a rush from the chase. I will gamble on a final sale item, and that is even more of a thrill. I am rarely wrong. This is one way I focus on being “kept” and not “disabled.” Disability sucks. 

I have a vintage rabbit fur from the 1970s. Since it was too late to save the rabbit, I did not take a stand. I bought it for a lovely price second hand in Palm Springs. 

I always get compliments on my blazers I picked up at Target. Do not miss their on-line inventory. It is different from what is in the stores, although those can be gems, too. Those garments have a special place in the rotation: for riding the Metro and running around town sweating in. It is a problem and also totally disgusting that people eat on the LA Metro. Even worse they let their kids eat: ice cream, melting candy, chips flying all over. Personally I would rather wait and eat somewhere that I could enjoy it and have access to a napkin. Might be worth teaching your kids that, too.

The workhorses of my collection are from White House Black Market because they look so good and most ones they make are machine washable. My elegant J Crew’s are high-maintenance, need professional pressing and do not travel well.

Once I fell in love with a black lamb leather jacket I saw in Beverly Hills. It was $400. I was sad, as it would never be mine. I dreamt of it. I never forgot it. Later I ran into again, while on my way to look for ramen bowls at Crate & Barrel. It was marked down to $90. Are you really there, God? I think so. I never got to Crate & Barrel that day. My black lamb leather jacket is thin yet warm, so soft to touch and a treasure in which I look awesome, if I do say so myself.

Dopamine is the brain chemical of desire. Wanting can be more fun than having, although I do not make that mistake. I enjoy having just as much as anticipating having. You can give yourself a thrill by fixating your brain on wanting anything. With a little practice, you can be in charge of what excites you. If you feel enslaved to wanting something even though it is ruining your life, you can replace that with wanting something else, with practice, working yourself up to salivating. Time, thoughtfulness, and effort can re-focus your lust. And for God’s sake, want something worth having. Disability was not worth having. I wanted a better life. I chased that down, too.

I know I sound a bit spoiled. Am I rotten, yet? I hope. I have a life of privilege, only because someone is willing to take care of me. I am grateful for this. Not everyone is so lucky. I have been alone and too sick to work with no one caring for me and not one person in this world checking to see if I were alive or dead. Now that that is over (is it? I still have nightmares about those days) I intend to have fun. And look good. And stay warm. And never never never wear athleisure unless I am actually exercising.

Am I the only one getting that dopamine surging when initiating care? I used to find it unbearably stressful, but now that I am good at it, I get excited about starting a new relationship with a doctor. That is fun! Dear Doctor, what will you be like? Whatever your education is, however you feel about your job and your patients, I enjoy the challenge of trying to win you over to understanding rare and misunderstood me. Of course I will arrive well-dressed so you know I respect you. 

I have learned to love ending a medical relationship, too. Although it always makes me upset. I feel grateful to anyone who helps me, but sometimes relationships crash and burn. As a patient, I am a lot to take. I demand much. I insist we get on the same page with helping me. I am not for everyone. No matter how high my hopes were and how promising it all once seemed, ending a medical relationship that is clearly over makes room for another that will be better, one that will improve my health. I have faith as well as focus.

I left that shop on Portobello Road, sad not to own that garment, unable to push the memory of it out of my mind, while still chiding myself for my never-ending ability to fall in love with something else no matter what Mr. Pennington buys me, which I think does make me spoiled rotten. 

But I gotta be me. So I got to work on getting that blazer.

I vision boarded it. I practice The SecretAsk, Believe and Receive is all it takes! I meditated on feeling worthy enough for something that beautiful which I would look so good in, while also sending out love and forgiveness to the entire world, just to be sure. I threw in some extra sun salutations. I Marie Kondo’d, but then I retrieved my vacuum from the garbage because dust definitely does not spark joy, but how can you get rid of it without a vacuum, and that is where the whole Kondo Detox falls apart. I bought kale and vegan gluten-free pastry at the Church of Whole Foods, where I picked up more books on how to make my world super-peaceful because isn’t human passion just the worst and life should never be hard! I would go to any lengths to make that garment mine.

Nah, I did none of that!

I followed the designer on Facebook. One day, they had a sale. The blazer I coveted was available, in my size, for an amount Mr. Pennington agreed was not too many euros.

I blotted my tears of happiness.

I reminded the shop to deduct the VAT.

I had them ship it to Mr. Pennington’s office immediately.


The fit is superb!