Why did the governor cross the street alone?

Because he had to.

Okay, enough with my terrible rendition of an already terrible joke. A new year means new elected officials. David A. Paterson has stepped down from his gubernatorial position in New york, returning to a civilian lifestyle after more than 30 years in politics. During his office, he endured several comic jabs on “Saturday Night Live.” But not being able to see anything out of his left eye and only colors and large shapes out of his right, Paterson should be commended for attempting a public life in government, an often thankless job even for the sighted.

A story about the former governor was sent to me by my friend and grad school comrade, Jessica, over a month ago right after it ran on December 19th in The New York Times. In an interview, Paterson admitted his fears of returning to “normal life,” a life outside of the public realm. During his years in politics, there were bodyguards and state police to accompany him wherever he went: work, the grocery store, even across the street. Whatever he needed, they were practically at his beck and call. Doors were held open, the proper jug of milk was selected, elbows were offered before the pedestrian traffic light switched to “WALK.” But now that he’s just an ordinary joe like the rest of us, he’ll have to learn to navigate and survive on his own.

Paterson claims he plans on returning to a school for the blind which he had not attended since the age of three. Such simple, mundane things as crossing the street are now a cause of mild panic in him. I can recall when I first began losing my vision, and I went on my first orientation mobility lesson. Because I had not fully lost my vision, my OM instructor required me to wear a blindfold so I wouldn’t cheat. We crossed busy streets, circumnavigated a Wal-Mart, conquered getting on and off the escalator. My heart throbbed–there’s nothing like the anxiety you experience after vision loss. Vision is probably the sense the average healthy human being depends on the most next to, say, touch. So to have that taken away and to be thrust into the world alone is undoubtedly scary.

But I have faith that Paterson will survive alright. I mean, he was able to govern the state of New York (in spite of the criticism he received for his work), so I don’t see why he wouldn’t be able to live independently. Hats off to you, Governor.

Click here for the full NY Times story.

Tuna casserole

Starkist

Say hello to Charlie. Then eat him in this casserole.

The holidays are always a frenzy, especially in the kitchen. You’ve got all four burners going on the stove, three different things in the oven, another in the convection oven, something in the slow cooker, maybe even on the grill or deep-fryer outside. It’s no wonder that we just want to all take it easy after the holidays are over.

Enter the tuna casserole. It’s simple and quick to make, and produces a hearty one-dish meal for the entire family. And it also makes for good leftovers–send it with your husband to work, serve it to the kids after school, eat it yourself at your desk while trying to take care of work and household tasks. It allows a combination of flavors all in one dish, so there’s less clean-up without sacrificing blandness.

Maybe for some culinarians (is this even a word?), tuna casserole sounds oh so boring, unadventurous. And while I do think of it as the typical American meal originating from the 1950s with the picture-perfect housewife in her petticoat, apron, and pointy-cupped bra holding a spatula in one hand and the tuna casserole in the other, I was, for whatever reason, craving a college comfort food. Yes, in college, I was the master of Hamburger Helper and Tuna Helper. It was one of the first things I learned to “cook.” But now that I’m a decade older, I thought maybe I should skip the meal-in-a-box and try making it from scratch.

Besides being a college comfort food, Starkist tuna is a childhood favorite. I know most of you will cringe at the thought of this, but my mama used to feed me rice mixed with tuna and fish sauce. The tuna always had to be the kind in vegetable oil (I don’t even know if they had the spring water kind then, and even if they did, it would’ve been too dry and blegh), and she’d mash the rice/tuna/fish sauce mix with the back of the spoon–the oil aiding in coagulating the rice mixture, shaping it into a mound inside the bowl before placing it in my happy, open arms. To this day, I still crave this comfort food from my younger years every so often. My husband always makes a face, saying it’s disgusting, but one can never explain one’s comfort food, right?

Anyway, this tuna casserole is an adequate Americanized substitute for my rice and fish sauce variety. I found it still tasty for days afterward. I love the browned cheese. Yum!

Note: As much as it is delicious, tuna casserole is definitely not photogenic For this reason, I decided to forego the picture and just post a pic of Charlie the Tunafish instead. Don’t ask me how I know the logo’s name.


Recipe: Tuna Casserole

Summary: Original recipe from All Recipes

Ingredients

  • 1 (12 oz.) pkg. egg noodles, cooked to al dente
  • 2 (6 oz.) cans tuna, drained
  • 2 (10.75 oz.) cans condensed cream of mushroom soup
  • 1 c. frozen peas, thawed
  • 1/4 c. fresh or canned sliced mushrooms (optional)
  • 1/4 c. minced onion
  • 2 c. shredded cheddar cheese
  • 1 c. Ritz crackers, crushed

Instructions

  1. Preheat oven to 425 degrees.
  2. In a lg. bowl, combine, egg noodles, tuna, cream of mushroom, peas, mushrooms, onion, and 1 c. cheddar cheese. Spread in a lightly greased 9″x13″ baking dish. Cover with cracker crumbs and remaining cheddar cheese.
  3. Bake for 10 to 15 min. or until cheese is brown and bubbly.

Variations

I used Ritz crackers in my version since this is what I had on hand. But the original recipe calls for 1 c. crushed potato chips. If this is what I happen to have on hand next time, I’ll use chips instead. Or try using Panco bread crumbs; as Alton Brown puts it, they offer a better breading alternative than just regular bread crumbs.

Cooking time (duration): 25

Diet type: Pescatarian

Meal type: lunch

Culinary tradition: USA (Traditional)

Microformatting by hRecipe.


This is a dish I really did cook entirely on my own, so if the Blind can Cook it, so can you.

A new year brings a new neurologist

After attending the Dallas symposium and the L.A. conference, I was convinced I needed a new neurologist. While I’d been with Dr. Brod since my NMO diagnosis in 2003, I never felt completely confident nor comfortable with him as my primary neurologist. He did manage to pull through with getting me the Rituxan therapy, but there had been numerous times when he was not readily available during one of my attacks. Instead of getting a hold of him (who knew my case best), I would be connected to one of his on-call colleagues who refused to prescribe me the necessary meds, mainly steroids over the phone because they were “not familiar with my case.” Instead, I would be told to proceed to my nearest ER to get the proper meds, and this would irritate me to no end because why should I have to wait in the ER and pay a hefty ER bill for something I already knew I needed? Also, all of the ER attendants I’ve dealt with in the past never knew exactly what NMO was, and they would take a very long time consulting other doctors or even the big medical handbook before coming back to tell me I needed steroids and I needed them quick. (Duh!) The other problem with Dr. Brod’s inaccessibility is that NMO exacerbations require a quick administering of treatment because symptoms worsen so severely in such a short amount of time. Within hours, a NMO patient could go from normal motor function or normal vision to paraplegia or complete blindness in one or both eyes. This gives more reason as to why NMO attacks need to be treated ASAP. And with all the difficult times I’ve experienced in trying to get the proper care through Dr. Brod or his associates, I finally decided to start seeking a neurologist elsewhere. I was tired of dictating my own healthcare; even though I’m an educated patient, I’m still the patient, and the fact that these doctors seemed so stingy with their medical advice, I just grew impatient and exhausted.

But enough about that. This is not at all a post about bashing particular neurologists–that is not at all my intention. It is more like an editorial review of my care in the past versus my present (and hopefully future) care.

I first met Dr. Benjamin Greenberg at the Dallas symposium where he was the hosting physician. I had expressed at the time that I was not 100% happy with my current care team, and so he suggested I try coming to his NMO clinic for a second opinion. And that is exactly what I did on January 6th.

John and I drove up to Dallas Wednesday evening for my appointment with Dr. Greenberg Thursday afternoon. I came prepared with a list of questions and concerns (which is key to having a successful doctor’s appointment–I’ll blog about how to manage your care team soon) and spent about 90 minutes with Dr. G. He thoroughly addressed all my issues, and I could tell by our discussion that he had indeed gone over my medical records and MRI films. I liked that he did his “homework” and was familiar with my medical history. My vision loss, he said, seems to be the main manifestation of the disease, and he attributed this to two reasons: (1) there is damaged myelin around the optic nerve fibers, and (2) there is damage to the actual optic nerve “wires.” The former, he said, would be easier to repair; the latter, not so much. There are, however, two studies currently happening. The first is getting the patient’s myelin to reproduce within the patient’s own body. The second is to inject stem cells into the back of the patient’s eyes and cultivate them to regrow optic nerve fibers and myelin. As for the timeline, I have no idea. Dr. G did reassure me that we are closer to figuring out NMO than MS, which is utterly ironic considering MS has so much more funding and awareness than NMO.

We also discussed my ongoing Rituximab treatment. Currently, I was only being reinfused once my B-cell count reached above 2% (normal range for a healthy human being between 2% and 10%). With this measurement, I’d been able to avoid reinfusion for an average of at least 12 months. Dr. G, however, has a protocol of reinfusing his patients every six months regardless of the B-cell count. When I expressed my desire to prolong the Rituxan as long as possible (who wants to get chemo when they don’t feel they have to?), he said it’s ultimately up to me, but then monthly B-cell and CBC monitoring becomes crucial. He also mentioned that there seems to be cases in which patients who wait for some B-cells to build back up in their system before killing them off again with Rituxan develop a resistance to the Rituxan. This is rare, he affirmed, but it has happened, so why allow the possibility of resistance? Why not keep the B-cells from ever coming back? Why not continue Rituxan infusions going every six months before any B-cells return? Hmm…interesting point he makes here. Now I’ll have to think more about this matter.

Dr. G also said there seems to be a trend in patients when the B-cell count reaches 1-2%, there is only a two-week window after that when the patient’s B-cell count will skyrocket to 7% or higher, placing the patient at high risk for an attack. This means getting the proper immunosuppressive meds within those two weeks is also crucial, so he prefers to keep the patient’s B-cells at bay with more regular infusions.

I told Dr. G I was concerned with how long I could remain on the Rituxan, explaining that I’d read how patients were sometimes taken off the Rituxan after five years. Dr. G said as far as he knew, as long as the patient was responding well to the Rituxan (i.e. the drug was keeping attacks at a minimum), he saw no need to move on to a different treatment. He admitted that he did not know the long-term effects of Rituxan on NMO since it was mostly used for cancer. He mentioned that he does know someone who has used it for NMO for nine years.

After we talked some more about drugs and treatments for the acute symptoms I experience most frequently–including neuropathic pain, sphincter dysinergia (when it’s hard to get the urinary flow started or if the flow tends to stop mid-stream), a low libido, insomnia, and fatigue–I asked if he could recommend me a local neurologist in Houston with whom he could work together with for my care. He referred me to Dr. George Hutton of Baylor, saying he was a neurologist he fully trusts. He is also going to recommend me a PCP as John and I have been in search of one ever since we moved to our new home in a different part of town.

After discussing the “serious” stuff, we shot the sh*t a little bit. Dr. G asked both John and me what we do.

“Aren’t you a chef or something?” Dr. G said.

Surprised, I had to laugh. “No, I’m in grad school for writing,” I said, tickled that somehow, the existence of this website must’ve traveled through the NMO grapevine to the doctor’s ears.

Overall, I felt my visit was pleasant and thorough. It was worth the trek to and from Dallas. Of course, if you ask John if it was worth it, you may get a different answer. But in return, I am rewarding him with one free round of golf.

Thoughts on D’s passing

After I was officially diagnosed with NMO in 2003, I went online in search of any information I could find about Devic’s. As it was such a rare disease, the search results were minimal. But I did find an online support group. This was where I met R whose son, D, had NMO. Throughout the years, during my most difficult attacks, R had been a constant support via emails and phone conversations. She gave me hope when life looked dim, lending her positivity to not only myself but others in our NMO family. She did this all the while with her own son’s health deteriorating to the point where he had become quadriplegic and blind.

It is with great sorrow that I received the news from R that D passed away Wednesday evening at 6:45 PST. And while I can only share a fraction of the family’s grief, I also share in their relief in knowing that D is no longer suffering and has gone Home. At the end of his days, D was not only having trouble swallowing, talking, and breathing, he also experienced mental loss and dementia. He was unhappy and fearful, as any of us in his position would be. In the words of his mother, he had endured too much for too long. And so it is with his passing that his family may move on to a new chapter in life.

This doesn’t mean there will be an absence of grief. I was feeling blue after I’d heard the news on Wednesday. John, in trying to cheer the both of us up, played this TED Talk by Neil Pasricha on the 3 A’s of “awesome.” It was humorous, touching, and inspiring. TED Talks are sponsored by a non-profit organization (TED) dedicated to “ideas worth spreading.” I invite you to watch the TED Talk and find out how to live more awesomely. And who can’t use just a little more awesomeness in life?

May you rest in peace, DT.

2010 Rare Neuroimmunologic Disorders Symposium videos online

I got an email from the TMA a few weeks ago saying that some of the video recordings from the Dallas event are now available for viewing. To stream them online, you will need Flash or HTML5 (iPad or iPhone) enabled browsers. You can also download the videos in mpeg4 format for viewing offline. Either way, go here to watch, but before you do, make sure your brain is ready for the dense medical talk.

Starting our urban (and hopefully organic) garden

I’m not one to make New Year’s resolutions. I’m a firm believer in creating goals as soon as you find the need or desire to do so rather than waiting for the dawn of a new year to tell yourself you need to do something you should’ve done long ago. Last weekend, my husband and I finally planted our first greens in our urban garden, and even though it just happen to happen on New year’s weekend, it had been something I’d wanted to do for years. The original plan for a garden was delayed after I realized I would eventually put my old home on the market and move. Then when we settled into our current house a little over a year ago, there were just other things that took priority, e.g. furnishing the place. We purchased a cedar raised garden bed kit from Costco several months ago, and it wasn’t assembled until more recently after I’d declared a new household rule that for every time John played a round of golf, he’d have to accomplish some task around the house. (And tasks I considered maintenance (e.g. mowing the lawn) didn’t count–they had to be “new” tasks.) Even after assembly, it took some time for us to get around to doing the research for optimal urban organic gardening. John’s boss, who is an organic gardener himself, recommended us this book entitled How to Grow More Vegetables…. Can you say there is a lot to learn for gardening? I think John cracked open the book a few times and then gave up. We drove straight to Lowe’s and bought Black Kow manure which was then stored in our garage for quite some time. You can imagine how nicely our garage smelled for those several months of cow poop storage. Finally, on the day after New Year’s Day, we ventured over to Buchanan’s Native Plants, a nearby nursery specializing in Texas plants. The employees were incredibly patient and helpful, holding our hands through the entire timid process of popping our garden cherry. We ended up walking away with cilantro, oregano, Sicilian (or flat-leaf) parsley, rosemary, thyme, and broccoli for our vegetable garden. For the shaded area next to our front door, we bought a dormant hydrangea and several aureas which John planted in the half barrel whisky cask we’d also bought from Lowe’s last year. Hopefully the hydrangea will bloom nice and big once spring and summer come.

In February, we plan to return to Buchanan’s for some tomato plants and basil which fare better in slightly warmer weather. I don’t even know if the plants we’d already purchased will survive the rest of winter; we don’t have a clue as to what we’re doing so don’t take this post as advice of any kind–it’s more of an update in our culinary lives. Yes, with our new urban garden, John and I hope to cut the spending at grocery stores all the while learning to appreciate the care that goes into growing our own food and enjoying the delicious and healthier alternative of self-sustainability. I know it’s silly but I’ve been going outside almost every day and sticking my nose into the herbs and inhaling the magical scents. (Hey, how else can a blind person monitor the growth process of her plants?) More updates on our gardening experiences to come. In the meantime, here’s a picture of our humble garden. Also, feel free to leave some gardening tips for us in the comments section. We can use all the help we can get. Remember, this is a couple who’s killed a cactus and just about every plant they’ve ever come across.



Garden

Starting off small

Vietnamese shaking chicken (or beef) – Com Bo Luc Lac

Ga luc lac or bo luc lac are French influenced dishes consisting of seared and sauteed bpcubes of meat served with a vinaigrette dressing. The term “luc lac” comes from the sound of the meat shaking in the pan while cooking. The dish is usually made of sirloin or ribeye steak, but I decided to go a slightly healthier route and make it with chicken. Whichever meat you choose, it’ll be tasty.

You can serve it with white rice or a French style fried rice (recipe posting TBD). This is often a favorite at Tan Tan and Sinh Sinh restaurants (reviews of these places also TBD).

The picture below is of the beef version which is on Rasa Malaysia. The one we took of our chicken version turned out too dim for the web.



Bo luc lac (Shaking beef)

Photo courtesy of Rasa Malaysia



Recipe: Vietnamese Shaking Chicken (or Beef)

Summary: Original recipe for beef from Ravenous Couple on Rasa Malaysia

Ingredients

  • 1.5 lbs. chicken thighs or beef sirloin or ribeye, cut into 1″ cubes
  • Marinade:
    • 2 tbsp. minced garlic
    • 1.5 tbsp. sugar
    • 2 tbsp. oyster sauce
    • 1 tbsp. fish sauce
    • 1 tbsp. sesame oil
    • 1 tsp. soy sauce
    Vinaigrette dressing:
    • 1/4 c. rice vinegar
    • 1.5 tbsp. sugar
    • 1/2 tbsp. salt
    Dipping sauce:
    • 1 lemon, juiced
    • 1/2 tsp. kosher salt
    • 1/2 tsp. freshly ground black pepper
  • 1/2 red onion, thinly sliced
  • 2 tomatoes, thinly sliced (optional)
  • 1 bunch watercress, long stems trimmed (optional)

Instructions

  1. In a medium bowl, combine marinade ingredients with the meat. Refrigerate and let marinate for 30 to 90 minutes.
  2. Prepare vinaigrette by combining vinaigrette ingredients. It should be a balance of sour, salty, and sweet. Pour 3 to 4 tbsp. over the onion and let stand for at least 10 minutes.
  3. Heat a wok over high heat. Add onion and meat 1 layer at a time and sear for about 2 minutes. Then shake the wok to sear all sides of the meat, about another 1 to 2 minutes.
  4. Prepare dipping sauce by combining ingredients.
  5. Drizzle vinaigrette on top of meat and serve with tomatoes, rice, and dipping sauce.

Variations

I accidentally added cupfuls of sugar instead of tablespoonfuls. (This is what happens when you are blind and have to juggle all the measurements in your head.) We managed to throw a lot of it out and salvage the dish, but in the end, it wasn’t too sweet at all. I also used brown sugar instead of white as a healthier alternative.

The original recipe called for slightly pickled red onions but I prefer mine sauteed with the meat. I can’t get enough of that scrumptious sauce flavor so I just added the onion to the wok while cooking the meat. I also substituted green onion since that’s what was in my fridge, and I needed to get rid of it. But using actual onion is preferable.

I also cut the rice vinegar by half for the vinaigrette. This worked out much better. I would maybe try white vinegar and even less of it next time to see how that turns out.

Lastly, the original recipe called for more oil to be added to the wok for cooking but I found the sesame oil in the marinade was enough to keep the meat from sticking to the wok surface. Otherwise, it’d be a super greasy dish.

Cooking time (duration): 30 (excluding marinade time)

Meal type: dinner

Culinary tradition: Vietnamese

Microformatting by hRecipe.

Remember, if the Blind can Cook it, so can you.

Food that will touch your heart

Fung’s Kitchen
7320 Southwest Fwy. #115
Houston, TX 77074
713-779-2288


4.5/5 steamed xiu mai


Fung's xiu mai

Xiu mai - one of my favorites

Happy New Year! Dim sum used to be a New Year’s tradition in my family; every January 1st, we’d gather at a dim sum restaurant mid-morning for this delicious Chinese brunch. Like the Spanish’s tapas and the French’s hors d’oeuvres, dim sum is the Chinese’s variety of small dishes conducive to socializing.

Dim sum, which translates to “to touch the heart,” stems from the tradition of drinking tea while conversing with friends. Travelers on the Silk Road in ancient China would need rest stops along the way, and so teahouses sprouted on the roadside. After a long morning of manual labor, farmers also needed a place to commune and relax. Teahouses began serving snacks as an accompaniment to the tea, and thus, dim sum was born.

Dim sum is mostly associated with the Cantonese people in southern China and Hong Kong who, over the years, had transformed the dining experience from a respited to a joyful, bustling one. Today, dim sum is typically eaten for brunch, enjoyed by the elderly after morning exercises or on Sundays for family get-togethers. In some of these overseas restaurants, dim sum can be served from as early as six in the morning and continue until three o’clock when the typical Western afternoon coffee break takes place. Many dim sum restaurants in the States still follow this tradition, some not even serving dim sum unless it’s Sunday morning.

Fung's fried taro puff

Fried taro puff - my other favorite

Dim sum in the U.S.is an experience in itself. The restaurants have open floor plans as large as ballrooms, and all tables are made for ten; even if you’re a party of three, you may get seated at a table for ten. Food isn’t ordered off the menu; carts piled high with steaming hot dishes are pushed around the restaurant, and you point to what you want and it’s given to you straight away–now that’s literally “a la carte.” The wait staff marks the dishes you order by stamping a paper that remains on your table until you’re done and it’s time to calculate the bill. In smaller or less traditional restaurants, you’re given a sheet of paper, and you mark off which dishes you want before handing it to the wait staff. Dishes come in small quantities (which I love) so you can try a little of everything. There are steamed buns filled with Chinese barbecue pork, all sorts of dumplings and fried pastries, cold jellyfish salads, congee (or rice porridge), braised chicken feet, egg tarts, and so on. Dim sum experts claim you should start with the steamed dishes, then move on to the exotic, then fried, then finish everything off with the sweets. And hot tea is always the beverage of choice–it aids in the digestion of the greasy foods. My friend, Joy, and even John when we had first met both did not like dim sum, saying that every dish tastes the same and not that great. I said they were going to the wrong places and eating the wrong dishes. Personally, these are my dim sum staples that I have to get at every dim sum meal:

  • Xiu mai – steamed dumplings filled with either pork or shrimp wrapped in a wheat flour skin and topped with crab, roe, and/or mushrooms
  • Har gau – steamed shrimp dumplings wrapped in wheat starch skin
  • Cheung fun – steamed large flat rice noodles rolled around shrimp or meat and served with sweet soy sauce
  • Nor mei gai – a lotus leaf filled with sticky rice and other savory ingredients such as hard-boiled egg, Chinese sausage, chicken, and/or pork
  • Gai lan – steamed Chinese broccoli with oyster sauce
  • Pork spareribs steamed with black beans and jalapenos
  • Fried taro puff

Fung’s Kitchen, along with Golden Palace and Dim Sum King (which serves dim sum every day, all day), are my favorite places to eat dim sum in Houston. These are the top three–I think I’ve only had better dim sum in Vancouver. I know this entire article was about dim sum and not about Fung’s itself, but I really can’t pinpoint what it is exactly that I like so much about Fung’s aside from the fact that their food is just damn good. Try it and see for yourself. Now after typing this post, my mouth is watering for a little food that would touch my heart. Maybe I’ll have to revive the old family tradition and plan a dim sum outing today. Happy eating! Here’s to many more in 2011…

Holiday blues

Okay, so I was overly ambitious last week and claimed I would blog every day up until Christmas. I had the ideas all lined up in my head: holiday recipes, shopping suggestions, and so on. But then the days flew by, and I found myself busier and more tired than expected. Come Christmas Eve, I was wrapping gifts, making jam (which I had planned on bloggig about), and cleaning house. Then Christmas Day, I woke up early to start cooking, followed by four hours of my side of the family, followed by cleaning up, followed by three hours with the in-laws. By 11:00 PM on Christmas, I was ready to crash.

At 5:20 AM, I woke up with pain in my back. It wasn’t the usual neuropathic pain and banding feeling I often get in the middle of my back. Instead, it stemmed from my lower back and felt like my spine was crunching down upon each other. Then the pain radiated upward and to the right into my shoulder blade. I took a Vicodin anyway and went back to sleep. All of Sunday, I napped here and there and felt nauseous. Maybe it was the Vicodin. Maybe it was something else. I couldn’t stomach anything except for a Muscle Punch from Smoothie King for dinner, and I still threw that up a few hours later.

On Monday I felt better; I was hungry in the morning and was able to keep down the small meal I reheated in the microwave. Was it a stomach virus? A 24-hour bug? Exhaustion? Over the past ten years or so that I’ve had to deal with NMO and its various symptoms and conditions, I’ve noticed that my percentage of flare-ups increase during the holiday season. Why is that?

After I was first diagnosed,I read any literature I could find on autoimmune diseases. I discovered that autoimmune diseases, as with many diseases that inflict Americans, are linked to stress. While poorer countries fight famine and other basic illnesses, developed nations like America deal with stress and the whole spectrum of diseases that come alongside it. Even for the average healthy person, holidays can be a time of high stress. But for those of us with NMO who try to strive for independence and do all the “normal” things “normal” people do (e.g. cook lavish dinners, host lavish parties), stress takes on a whole new level and meaning. And for people like me who have a mild case of OCD, the stress level rises even more–everything has to be just like so.

Ever since the NMO Patient Day, I’ve been in regular contact with E and J; we bonded quickly because of our shared lifestyle (somehwat newly married) and disease (NMO). It was interesting to realize that despite our daily battles with NMO, all three of us hosted holiday gatherings in our homes. Perhaps playing hostess is something we’ve always loved to do even before we were diagnosed. Perhaps hosting the holidays helps us feel “normal.” Perhaps it’s a way to prove to others and ourselves that we can be “normal.” But is it worth the aftermath, the exhaustion, the vomiting?

Last week, the thought of falling behind on my blog kept nagging at me in the back of my head. If I take something on or give my word to something, I always make sure I follow through. So knowing that on Monday, I had said I was going to write a post every day, but by Thursday when I realized it wasn’t going to happen, I was mentally beating myself up inside. But then I told myself that the few regular readers I have out there will forgive me, especially if they knew I was trying to take care of my health, and I felt better. Then I knew I had to forgive myself, and I would feel much better. We are always hardest on ourselves, aren’t we? I need to break this senseless cycle of stress because it’s not doing anyone any good. So here’s to not keeping my word, here’s to not caring so much, not stressing out, not taking myself so seriously. Here’s to better health.

The blind trader

My friend, Heari, sent me this article about Ashish Goyal, a 30-year-old trader at JPMorganChase‘s London office. A graduate from Wharton, Goyal did not come upon this job easily. After receiving his first business degree from an accredited university in India, he had made the short list of candidates for several firms. But upon learning that he was blind, most companies turned Goyal away. By the time he reached the ING interview, he blurted, “I’m blind. Do you still want to talk?”

Years later when he applied to Wharton, the Director of Admissions signed off on his application, saying that there had yet to be a blind trader on Wall Street, but either way, Goyal would be better off with a degree from Wharton.

After Wharton, he interviewed with JPMorganChase, his interviewers were impressed that he was only one of few who had excellent risk management skills and the knowledge of Asian interest rates and foreign exchange. The company decided to take a risk and hire Goyal.

“You can put me on the spot trading desk,” he said, “but I’d be too slow…You need to realize where I would add value and where I don’t. You need to find your niche.”

With full awareness of his limitations, Goyal uses screen reading softwares and headsets to do his work, that is, to manage banks’ billions of dollars in their exposure to risks such as foreign exchange fluctuations. When he has to read graphs, which the software cannot do, Goyal scrolls through the data and forms the graph in his head.

Kudos to JPMorganChase for taking a risk on Goyal and hiring a blind man to handle big-time client accounts. The vocational playing field for the blind (and for the disabled, for that matter) is still highly uneven, but it’s stories like this that give us hope.

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