How to plan a wedding blind

And I mean that in all sense of the word “blind.”

A few weeks ago, one of my best friends, Joanna, got married. I was fortunate enough to return the favor of being a bridesmaid in her wedding as she was in mine. I saw her go through most of the wedding planning, and while their engagement period was a fractionof mine (8 vs. 12 months), it reminded me of how hectic the engagement period (thus, wedding planning period) can be. At the beginning of Jo’s and Danny’s, John (who had just exited the notorious engagement period) kept poking fun at Danny, saying it’s a painful rite of passage that every husband must go through. Sure enough, like all engagements, Jo’s and Danny’s were not without their share of bickering and tumultuous moments.

John and I never fought as much in our time we’d known each other until those sweet 12 months between proposal and ceremony. Men and women are programmed to function so differently, and the differences were inherent in our personalities: I was on top of things at all times, liked to be ahead of the game, had a massive Excel spreadsheet for everything, was “efficient” with all tasks, was the only bride I knew who ever followed the “to do” checklist on the Knot website all the way to game day. I put “efficient” in quotations because I understand now in hindsight that while at times I thought I was being efficient by starting on certain tasks early, I often took a long time to accomplish these tasks. Being the perfectionist, I may not have always used my time wisely, spending more time and energy on things that probably could’ve been achieved in half the time with pretty much the same result.

“Nobody will notice that anyway,” John would say. But of course, even though I (being the blind bride) wouldn’t notice, I would know.

John, on the other hand, seemed to like to wait till the last possible minute to start a task (e.g. our wedding invitations). He didn’t fret over the details, took weeks to check things off the list. In the end, I just remember breathing a humongous sigh of relief after our ceremony, knowing that on my wedding day, other people I had appointed would be taking care of all the details for me, and that as long as everyone was still alive and relatively healthy and safe through the end of our reception, then it was a success. I saw Joanna go through the whole thing, the whole wedding planning and all the spectrum of emotions that go along with the wedding planning from anxiety to excitement to annoyances to full-out tears. No doubt wedding planning is stressful for any bride, nonetheless a blind one.

Before I lost my eyesight, I was even more of a control freak than I already am. Yes, yes, I know. You find that incredibly hard to believe. But I was even more anal, even more of a perfectionist, wanting to do everything myself because, well, simply put, I just didn’t trust anybody else to do it. I liked being independent, and I deemed my own thoughts and opinions above others’. Then I lost my vision, and suddenly, I was thrown into the role of Depender. No longer could I drive myself, no longer could I see what things looked like without the aid of verbal descriptions, and even then, it was difficult. What it all taught me is that we–even the sighted people–cannot control everything in life. Sometimes, we just have to let go and let others handle it. And that’s exactly what I had to do with a lot of my wedding planning. I had to pick people I trusted (thanks, bridesmaids and house party!) who could make executive decisions for me. When we were gown shopping, I told them what I liked and didn’t like, and then I had to trust that they wouldn’t let me look ugly or stupid on my wedding day. Same thing went for hair, makeup, jewelry. Even things like cake decorations, flowers, ceremony and reception venues, bridesmaid attire, groom’s attire–all this I had to trust others like John, my bridesmaids and house party, my vendors to choose for me. In a strange way, it was liberating to plan the wedding as a blind person because I didn’t have to make a lot of decisions, deferring it to others whom I trusted. It seems as though the only decisions I really had to make were menu and music.

So I think the important thing about wedding planning (and this goes for all people but especially the sight-impaired) is to let go. Let others take care of it. Surround yourself with and choose people whom you trust to be making executive decisions on your behalf. And since it is your wedding after all, you will want to play a part in the planning process, so don’t be afraid to ask others to explain to you the visual effects of things in detail. Make sure they’re patient with this, and be patient with yourself too. Don’t be quick to frustrate both others and yourself. Remember that in the end, it’ll all come together and be fun. Enjoy your day. And last but not least, laugh.

Dan’s story

In my previous post about Dan, I expressed my sadness whenI learned by a text message from his mother Reny that he had died. In lieu of flowers, the Tan family asked for donations to the Guthy Jackson Charitable Foundation in order to advance the research in NMO. Over $20,000 were donated (the largest donation the Foundation had ever received), and more than 400 people attended Dan’s funeral. What an amazing life story.

Before he was handicapped by NMO, Dan was a basketball athlete. On Sunday, the Ann Arbor news ran a story on the friendship between Dan and Darius, the point guard for Michigan. The story reminded me that great things can be born of tragedy, and I am grateful Dan’s memory not only lives on but has a positive impact on those who knew him and even those who didn’t.

Where not to go for Valentine’s Day

Stella Sola
1001 Studewood St.
Houston, TX 77008
713-880-1001


3.5/5 bone marrows

Note: The restaurant lighting was way too dim for any quality photos so no images for this post.

For one of our Supper Club experiences, we ventured to Stella Sola, which came highly recommended by a foodie friend. The restaurant supposedly fuses local Texas ingredients with Tuscan flair, this being yet another project brought to the Houston dining scene by the same crew that brought us Reef and Little Bigs.

“You thought the bone marrow at Catalan was good? Wait till you try the marrow at Stella Sola,” Foodie Friend said.

So we did try the bone marrow at Stella Sola. But we had to wait a good long time for it. The service was incredibly slow–we must’ve waited over 30 minutes for our appetizer. The bone marrow was delicious, but I recall Catalan’s bone marrow to be superior; Stella Sola’s was not as rich, and I preferred the condiments served alongside the marrow at Catalan. Or maybe I was already grouchy from having waited too long.

For my second course, I had the “country style” pork rib with bacon braised greens, olive oil mash (whatever that is), and lemon mostarda ($23). (What is with these complicated menu descriptions anyway?) The sides seemed to me like a polenta, and I wish they would’ve just called it so and save us all a headache. The first few bites were good, but as the dinner wore on, my dish began tasting saltier and saltier. My dinner companions also noted that their dishes–a Wagyu steak (which the server described as a Texas kobe) and a local Texas fish–were nothing to rave about and definitely not worth the price.

In the end, we were lukewarm about our experience. I personally would not choose to go there again, but to be fair, I’ll usually give everything a second chance. Stella Sola seems to fall into line with my impressions of the other sister restaurants. While I liked Reef, I didn’t buy into all the rave with Little Bigs. And that’s exactly how I felt about Stella Sola: it’s good but nothing awesome.

When I told Foodie Friend that I was unimpressed with Stella Sola, she admitted that their prices dictated more of a “sitting at the bar and ordering just the bone marrow and wine” type of visit before heading elsewhere for a more suitable meal. Oh well. At least I can say I’ve tried it. But the fact that I was ambivalent about something Foodie Friend had raved about makes me wonder if I have truly transcended what is considered normal and entered into true gastronomical snobbery. That idea, too, causes me ambivalence.

Why money sucks

Here is a continuation of gripes I have as a blind person. Money sucks. Not in the philosophical sense, but physically. And to be specific, I mean U.S. money sucks. To be more specific, U.S. currency sucks, i.e. the actual 75% cotton and 25% linen bills that we (if we’re fortunate) carry around in our wallets every day.

In most other countries I’ve visited, the currency takes the form of different sized (and thus, weighted) coins and different sized paper bills. While the U.S. has distinct coins with their varying sizes and ridged vs. smooth edges, all of our paper bills come in the exact same size. I as a sight-impaired individual hate this.

Today before going to lunch, I was trying to count my money so that I would have cash on hand, an attempt at avoiding the credit card dance I so often find myself doing when dining out with friends. I had to use my trusty Amigo portable CCTV to magnify each bill, and because there are at least two generations of American currency floating out there, I didn’t even know where to begin looking for the most legible number denoting denomination. It took me ten minutes to do what a sighted person would be able to do in less than ten seconds. Frustrating, to say the least. Why won’t the U.S. print different sized bills? My guess is that it would cost too much to reprint currency and properly circulate it, swapping out the old for the new. I know there are blind people who are lobbying this issue, and I think it’s only fair, especially after the ADA was established, that the visually impaired never be placed in a position where they are confused about their monies. It would aid in independence, and although it would take a special kind of asshole to rip a blind person off, why allow that chance to happen? Change the sizes of U.S. currency, America, and level the playing field for those who are sight-impaired.

Chuc mung nam moi!

Translated from Vietnamese to English, this means “Happy New Year!” Growing up in Alief where there was a Vietnamese-American presence, most all of my non-Viet friends knew this phrase. And today, I say it to you as it’s the New Year, according to the lunar calendar.

There are many customs practiced during Tet, or Lunar New Year. For days and even weeks leading up to the New Year, households prepare for the impending celebration by cleaning house, cooking, repaying debts, buying new clothes, etc. How you spend the New year, the Vietnamese and Chinese believe, dictates how the rest of your year will be. It is considered bad luck to clean on the New Year, and visitations to families and friends are done in a particular order to avoid insult. Money in red envelopes are given to children (or elders), firecrackers are ignited, and dragon/lion dances are performed to loud percussion all to ward off evil/bad luck spirits. There are so many traditions and superstitions linked to the Lunar New Year that I, as a second-generation Vietnamese-American, can only fathom a handful of them. I have yet to be in Vietnam during a New Year celebration (which I heard lasts for a week or so–businesses close shop to celebrate), but it’s supposedly a much larger spectacle than it is here in the States.

The traditional New Year’s food for the Vietnamese is banh chung or banh Tet: a sticky rice cake containing fatty pork and mung bean. It is wrapped in banana leaves before steaming, the leaf lending the savory cake an olive green hue once done which is supposed to symbolize the earth. Growing up, I’ve always eaten banh chung all year round. But during the New Year, it’s especially a treat. My paternal grandmother made the best banh chung; she’d make dozens of them to give as presents to visitors during Tet. Today, I’m not so lucky to get homemade banh chung, but I find that My Hoa Food Market (13201 Bellaire Blvd., 77072) makes some pretty comparable banh chung. Unlike my grandma’s (which were an enormous 8″x8″ square), the ones from My Hoa are a more manageable size, fitting into the palm of your hand. I grew up eating them plain, but some like to add sugar or Maggi seasoning sauce (similar to soy sauce and GREAT with eggs sunny-side up). I’ve even seen some pan-fry their banh chung in a skillet until the rice becomes crispy. Supposedly, this frying method is a good way to “freshen” up older banh chung.

I know that I as the Blind Cook would typically have a fabulous recipe posted, but frankly, I am no banh chung master. I do have a recipe from an aunt but I have yet attempted to make it from scratch. I’ve seen my grandmother and aunts squatting over the bowls of sticky rice, shaping them into perfect squares and rolling them inside banana leaves, to know that it ain’t no easy task. Perhaps I’ll attempt it one day. Perhaps I won’t. Maybe I’ll continue opting for the ready-made kind at My Hoa. Whichever way we eat them, it’s still a timeless Tet tradition. So let’s lift our forks full of glutinous bites of banh chung and toast to this Year of the Rabbit!

Banh chung

Took the pic myself. The square cake with Maggi on top.

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.

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