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.
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?
Many of us who live with NMO (and almost all other autoimmune diseases, for that matter) experience fatigue. Fatigue is one of those funny things to have: externally, nobody can tell you’re suffering from it but internally, you just can’t help feeling like a big sloth. Even my husband who loves me dearly (but who can’t possibly know what it feels like to be me) often says, “You’re always tired!”
Because NMO affects our neurological system, it is often frustrating to feel certain sensations (e.g. pain, tingliness, numbness, temperature changes) and have them not manifest on the outside of our bodies, a “proof” of some sort. Oftentimes, I feel like when I tell people how crappy I’m feeling, they look at me strangely and nod knowingly, pretending to sympathize but really not fully believing the extent of my complaints. After all, open bleeding wounds you can see. But not pins and needles poking you from the inside. For many of us A-type personalities, fatigue is especially a thorn in our side as we prefer to be on the go but this thing prevents us from doing so, and the self-critical devil on our shoulder taunts us, saying others will think we’re just being lazy, that we’re faking it. And thus is the complexity of fatigue.
As you can tell from my previous posts, I had quite a Thanksgiving. It was the first one in almost a decade that I’d cooked, with the help of my sous chef husband without whom I could not have pulled this off, a feast almost entirely from scratch (with the exception of the stuffing and corn). The food was insanely delicious–even with nearly 30 pounds of turkey, we had only three legs left over at the end of the night. Yes, our guests tore it up; many of them even said it was the best turkey they’d ever had. But despite the happy stomachs and good times, all the preparations and festivities left me exhausted. When asked if I planned on doing any Black Friday shopping, I could only look aghast: “Are you kidding me? Who has the energy?”
Apparently, everyone without NMO (and even some with NMO) does. The truth is everyone shops on Black Friday. It’s Christmas on steroids. It’s sad, really; this magical season turned consumerism. On Wednesday afternoon, John and I counted twelve people already waiting outside Best Buy for Black Friday. Folks, I said Wednesday afternoon. That means they were going to wait over 48 hours, through rain and cold, to save a few bucks. Okay, so I know the times are hard, but seriously…48 hours?!
Last night, I asked John if he remembered when this ridiculous tradition of Black Friday began.
“I don’t know. Maybe two or three years ago?”
No way, I said. Black Friday had to have been around since the ’90s. But neither one of us could determine when people started staying up all night to line up outside Wal-Marts, Best Buys, and outlet malls to flood the aisles at door’s open to grab and claw at discounted items. And where did the term “Black Friday” come from anyway?
According to this site on Black Friday history, the term was coined as early as the 1960s when accounting books were kept by hand, and stores were said to move from the red (indicating a loss) into the black (profit). Ever since the first Macy’s Thanksgiving Day parade in 1924, the Friday after Thanksgiving was the official kick-off to a bustling holiday shopping season. Then in the 1960s, the Philadelphia police dubbed the day after Turkey Day “Black Friday” when complaining about the traffic and pedestrian congestion on the streets.
I can’t recall a time when I actually stayed up all night or woke up extra early to make it to a door buster sale on Black Friday. And now that I’m blind, the chance of me doing so is even slimmer. I already loathe crowds to begin with, and when you have poor vision, the noisy herd of people pushing and poking at you is just not worth the stress when you can’t see well enough to be on guard. It is an over-stiumulation that easily exhausts me.
Which brings me to my topic of why Cyber Monday trumps Black Friday. Cyber Monday is indeed only a few years old. Started in 2005, Cyber Monday denotes the Monday after Black Friday when people have returned to their usual routine yet still itch with the shopping bug do most of their shopping online. Following in the suit of Black Friday, online stores (whether they have an actual brick and mortar store or not) deeply slash their prices in order to up their internet sales. And many stores like Best Buy, offer almost all of their Black Friday deals online. You can see if the item’s sold out at the click of a mouse, and you don’t have to wait in line. That’s exactly what we did the last two Black Fridays when we wanted those Samsung TVs.
Shopping online is the biggest convenience, especially for blind people. You don’t have to deal with crowds, you don’t have to figure out how to get to and from the store, you don’t have to wait in long checkout lines. You simply use JAWS or other screen readers to find what you want and click “Confirm Order.” And volia! You’re done. And you did it all in the comforts of your own home or office.
In pondering participation in the Advent Conspiracy, I didn’t plan to do a lot of shopping this year anyway. But when I woke up this morning with all these great deals in my email inbox (like the $10 off a $25 purchase and free shipping at Origins), I might have to do a little shopping after all. And the best thing is I would not have stayed up all night standing out in the cold waiting for these deals. And I then had the energy to pump out this post.
On November 10, John and I found ourselves in the Hilton in Beverly Hills, California, at the second annual NMO Patient Day sponsored by the Guthy-Jackson Foundation. Similar to the symposium I went to in Dallas back in September, the NMO Patient Day was a gathering of patients, their caregivers, clinicians, and physicians; I reconnected with some of the people I had previously met just a few months before in Texas. The Patient Day, while similar to the symposium in that a part of its purpose was to dispense information addressing issues NMO patients are concerned with (e.g. latest effective treatments, future of research, available resources), the main difference was that the NMO Patient Day was just that: a day with only NMO patients whereas Dallas included TM and ADEM. Another difference, related to the fact that the symposium was threedays versus the Patient Day being only one, was that the Patient Day felt much less dense; there were scientific talks but my brain didn’t hurt by day’s end. That’s because the event really was geared toward patients and not a medically-minded audience of doctors and research scientists. After opening remarks by Victoria Jackson who founded the foundation with her husband, Bill Guthy, after their daughter was diagnosed with NMO, the program went straight into explaining what the foundation has been doing in the past year or so. A clinical consortium had been set up between three NMO centers to work toward advancing medical research and thus, patient care: the Scottsdale Mayo Clinic with Dr. Dean Wingerchuck, the UT Southwestern‘s NMO Center in Dallas headed by Dr. Benjamin Greenberg, and the Johns Hopkins Neuroimmunology department in Baltimore with Dr. Michael Levy. The purpose of the consortium is to collaborate in research in order to advance the sciences and studies of NMO. Because of these efforts, largely due to the support from the Foundation, we are now closer to figuring out a cause for NMO than for MS despite the massive funding and years MS has over NMO. (This, at least, was what we were told; as far as how this is so, I have yet to understand the reasoning.)
The IgG biomarker, in fact, which was discovered by the Mayo Clinic a few years ago to test for NMO, was the first antibody ever found in an anti-inflammatory disease. The IgG existence indicates that NMO is indeed its own disease and not a form of MS. (Now if only my friends can remember this and quit thinking I have MS.) But this medical advancement helps NMO shed its orphan status, be recognized as a unique disease, and thus attract more research.
There was also a huge push to join the NMO repository of the Accelerated Cure Project (more about this in a future post), which I’ve already done in my previous Dallas trip. This time in L.A., John even joined as a control subject. This was followed by a Q&A session between the NMO audience and a panel of physicians. Some interesting things I heard:
The Q&A was followed by a stem cell therapy presentation by Dr. Richard Burt of Northwestern which I’d already seen in Dallas. Then Dr. Daniel Siegel a psychiatrist from UCLA, switched gears up a bit and talked about mindful awareness/meditation and the importance of it for everyone, especially those with NMO as our disease alone is such a huge source of stress. He took the entire audience into a mindfully aware state, instructing us to concentrate on our breath and our selves. He said that during meditation or mindful awareness, our brain is completely active–this is not relaxation, where the brain is inactive. I have been told for years by numerous people that meditation would be good for me. My friend Karen bought me Wherever You Go, There You Are five years ago. I never finished the book. My aunt tried to teach me tai chi; I grew impatient and gave up. I downloaded meditation podcasts but never listen to them. A therapist I’d seen showed me meditation techniques, but I’d given up on that too. It’s like my brain knows it’s good for me, but something hasn’t clicked into place for me to actually actively pursue it. I did tell John while at the Patient Day, though, that I was thinking of doing at least two minutes of meditation and breathing exercises every day for 30 days to see if it would be beneficial and, of course, blogging about my experience here. Now if only I can get to the point of actually starting the trial experiment.
The 2010 NMO Patient Day was a great event. Not only did the Foundation offer financial support in the form of travel grants, it offered moral support, saying that now, NMO patients have a home. We are no longer an orphan disease, patients lost and confused, knowing nowhere to turn. Now there is a growing community and plethora of information and resources people with NMO and their caregivers can turn to when they need it. With NMO patients being the go-getter types, it was only a matter of time when we’d all band together and form an alliance and support network. It just took the vision and means of Bill Guthy and Victoria Jackson to make it all happen. So thank you to Bill, Victoria, Dan, and the entire staff behind GJCF, for such a successful 2010 NMO Patient Day.
On November 7, we strapped our KHS on the car and drove out to the Sun & Ski in Katy to ride the Tour de Donut. We rode the 28 mile route and joined the timed race even though we told ourselves we’d take it easy especially since it was going to be my longest distance cycling ever. i guess we figured it wouldn’t hurt to try for the ski trip for two should some miracle happen that day and our bike either grew wings or our stomachs expanded to fit one million donuts.
The weather was extremely chilly for me that morning–maybe upper 40s? Luckily, I had just made a trip to Performance Bike to buy biking pants (which still left my calves naked) and a skull cap to wear underneath the helmet. I wore a windbreaker jacket and winter gloves underneath my biking gloves, too, and I was still cold. Once we started biking and the wind hit my face, I grew to understand why John was considering buying the full face mask. You may look like a scary robber but it’s totally worth it; that wind is vicious, and I was even cold from the stoker position. Poor John; he had to bear the brunt of the wind being on the front of the bike.
By the time we made it to the first rest stop, however, it was getting warmer. The donuts were cold but putting something in my stomach still helped to warm my body up. There were two rest stops for the 28-mile ride, and between the two of us, we ate seven donuts. We biked it in 2:33 including the two stops we made to eat and pee and the one stop we made so John could help a guy change his flat. According to our trustworthy Cyclemeter, we were in motion for two hours, which means we averaged 14-15 mph. Not bad. The app also told us we did hit over 20 mph a few times, but that wind was killer.
It was nice once the sun came out but I wish John would’ve put the speakers on the bike. It’s nice to view the suburban landscape while biking, but if you’re the Blind Cook, what can you do besides listen to cars passing you up?
In the end, after taking into account our time and donuts eaten (which shaved off five minutes each), we finished just about in the middle. I guess that makes us average bikers on the tandem. But it was a fun time I got to spend with my hubby getting some exercise and doing it all for a good cause. Thanks to Shipley’s and Sun & Ski for sponsoring the Tour. Till next year…
This question has posed a puzzle for doctors and scientists for years. Who is likely to be diagnosed with NMO? What triggers NMO? What are the underlying causes of NMO? How can NMO be prevented, treated, cured? Like other autoimmune diseases, nobody has the answers. From what I’ve learned through the course of my condition by personal research and the 2010 Rare Neuroimmunologic Disorders symposium, a person with NMO has to: (1) possess the genetic susceptibility for the disease, and (2) be exposed to the environmental factor that triggers the disease. Both must happen in order for NMO to develop; they are not mutually exclusive.
On that note, I recently attended the NMO Patient Day in L.A. sponsored by the Guthy-Jackson Foundation (to be outlined in a future post) where I befriended E and J, two young women who, like me, are ambitious and proactive types. All three of us are “newly” married without children–E for three years, J for three months, and me for six months. All three of us are thinking about possibly having children, forging forward in our vocations while being good wives to our husbands. Over dinner while the men talked man talk, E, J, and I discussed how it seems most of the people with NMO share similar qualities: determined, intelligent, strong-minded and strong-willed personalities. Nobody we met was just sitting around on their couch watching “Jersey Shore” marathons. Everyone was doing something in addition to dealing with their NMO. And almost all of them were women.
What did this all mean? E, J, and I had no idea, but I pointed out that it seems autoimmune diseases often inflict people with high stress levels. This is no surprise since most of our attacks and symptoms arise almost immediately after or even during stressful life situations. (This was, in fact, noted by the doctors.)
I thought back to all the people with NMO I’ve gotten to know over the years either online, on the phone, or in person. All of them, with the exception of two (one whom I never had contact with but I’ve kept in touch with his mother), all have been female. Additionally, all are driven, and compassionate individuals. Everyone has been open in sharing their stories and struggles; perhaps this is due to the fact that NMO is very rare and so we have to be candid with our lives in order to make connections which are rare in itself since our network is so small. E pointed out that most people she’s met with MS are much more private about their condition, and I reasoned that because MS is more widespread and the research more advanced, MS patients can keep quiet and still receive adequate treatment. NMO, on the other hand, is an orphan disease, and so with the little research and resources available to NMO patients, we feel we need to speak up, speak out, and speak loudly about our disease in order to move and shake the medical world. “Hello! We need help too!” But when I think about S and B whom I’ve been in contact with for several years now ever since my diagnosis in 2003, I find that they, too, are like E, J, and me. Of course, the future of NMO medicine cannot simply be hinged upon similar traits without hard evidence, but I can’t help but wonder why the majority of us with NMO are this particular type of woman. Any thoughts?