Can’t see it? Just do it. Stuff for the blind and everyone else.
Can’t see it? Just do it. Stuff for the blind and everyone else.
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.
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.
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.
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.
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?
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.
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.
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.
On Wednesday evening, I had the privilege of attending Andrea Bocelli’s concert. I first fell in love with the tenor’s music in 2003 when I was stuck at home on disability after my worst NMO attack. I had nothing to do except read books and watch TV. I became addicted to HBO‘s “The Sopranos”; I would watch episode after episode on DVDs rented from Blockbuster, often spending eight hours a day following Tony, Carmela, Big Pussy, and the crew around, watching them get in and out of all sorts of trouble. In the episode entitled “Commendatori” in the second season, Tony and some of his crew members travel to Italy for business. Tony’s wife, Carmela whom Tony leaves back in Jersey, begins to doubt her marriage with the mob boss. I was especially moved in this epsidoe–the acting is so good, the plot line getting better–and my emotions were attached to the musical choices. Bocelli’s “Con Te Partiro” was played multiple times throughout the episode, culminating in a final play over the ending credits right after the camera zooms in on Carmella’s quiet reaction when Tony finally returns home.
Immediately after the episode finished, I searched online for the songs played in “Commendatori.” I had never heard the song before but I had such an instant attachment to the song. I downloaded it, and in the meantime, I looked for more songs sung by the artist, Andrea Bocelli. I found “Ave Maria” and “Nessun Dorma,” which happens to be the song Paul Potts sang to win 2007’s “Britain’s Got Talent.” Bocelli’s songs were on heavy rotation on my iTunes for several weeks.
Fast-forward to May of this year. It was our wedding day. The instrumental version of “Con Te Partiro” was played on the piano when I walked down the aisle. Ever since I’d first heard the song seven years ago, even before I’d met my groom, I knew it would be the song I’d walk down the aisle to. “Con Te Partiro” literally means “with you, I will leave” in Italian. The English version of the song that Bocelli sings with Sarah Brightman, who was married to musical composer Andrew Lloyd Webber and perhaps best known for her role as Christine in The Phantom of the Opera, is entitled “A Time to Say Goodbye”. With either title, I thought it fitting for the bridal procession: in the English version, I was saying goodbye to my dad, and in the Italian version, I was going with my new husband. Above all, I simply loved the beautiful, majestic elegance of the song.
So after years of auditory admiration, imagine my excitement when I found out Bocelli was coming to Houston. The concert was grand: he spent the first half singing both solo and duet opera and the second half singing pop Christmas songs from his latest album. My favorite, of course, was the last two songs of the four-song encore when he donned a cowboy hat and sang “Con Te Partiro” and “Nessun Dorma.” My eyes got wet, it was that touching.
What makes this tenor even more amazing besides holding the record for having most albums sold by a solo classical artist is that he is also blind. Born with congenital glaucoma, he completely lost his eyesight at age 12 after a soccer accident. At Wendesday’s performance, Bocelli was either guided by the maestro or his duet accompaniment each time he entered and exited the stage. He even danced a little dance with one of the singers. He managed to sing to a packed house at Toyota Center, not letting his blindness impede him from doing what he loves and doing it well. Like his music, I find Bocelli himself inspiring. Thanks, Andrea, for giving unto the world your talents despite your obstacles.
Don’t get me wrong. I love my Apple products. In fact, there will be upcoming posts raving about how great they are, and I’m not just saying this because my husband is an Apple geek nor because I have a need to fulfill the Mac user stereotype. I say it because Apple products with their VoiceOver feature are, as a whole, the most advanced in accessibility functions for the visually impaired. But like all things of this world, VoiceOver is not perfect. Or is it me as a human being that’s not perfect? I’ll tell you the following story, and you decide for yourself.
I am part of this network that often sends announcements to their members via email. The emails are always from Donna Tripley, who I assumed was the network’s PR rep. The network is small and emails from them are sparse–I maybe get one once every two years. I don’t know most of the people in it personally, so imagine how surprised I was when the other night, as I was sifting through Twitter on my iPhone, I read a tweet from a fellow grad student. It read: “I hate getting emails from Donna Tripley…”
What? I thought. Donna Tripley sounds so familiar. Isn’t she that network rep? Is my fellow grad student part of this network too?
I was a little giddy–you know that feeling when you find out you’re somehow connected to someone in more ways than one. But because I hadn’t seen the name Donna Tripley in so long, I wasn’t sure if it was this network or something else that my schoolmate and I had in common. So naturally, I decided to google Donna Tripley to see which organization she worked for. What would we do without Google nowadays?
Unfortunately, “Donna Tripley” returned no notable results. So I returned to the tweet to check on the spelling of Ms. Tripley’s name. Perhaps I spelled her last name wrong. I scrolled over each letter of Donna’s name using VoiceOver’s character mode, starting with her first name, and guess what I discovered?
Donna Tripley is really spelled “donotreply.”
That’s right, all this time I’d been getting automated emails from a “do not reply” account, I thought it was a woman named Donna Tripley. All because VoiceOver is not perfect and read aloud the words to sound like a name, a Donna Tripley to be exact. Sigh.
I told my husband who couldn’t stop cracking up at my foolishness. But I beg your pardon. Is it my fault, or VoiceOver’s?