I just returned from my little Braille graduation ceremony at the DARS office in the Heights where there is a Division for Blind Services. Thank you to Joanna for coming and being my one-woman fanfare as I ambled up to the front and received my certificate. Both my Braille teacher, Benigno, and my former counselor, Lori–two people whom I adore–were both there to congratulate me. After the little pomp and circumstance, the three of us took a picture together, and then I unfortunately had to leave before we got to dabble in the hot dogs, Doritos, and other post-ceremonial snacks.
Before the mini-ceremony, we went around the circle and introduced ourselves. There was definitely a camaraderie to be had in telling a potential group of strangers how you lost your vision and why you are learning Braille. Mostly there were people with diabetes or glaucoma, but there was the occasional brain tumor and other rarities. The fact that people were so candid about their problems was refreshing to me–Americans don’t normally say to someone they had just met, “My name is X, and I have so-and-so disorder.” It is often taboo to discuss someone’s health or medical history, and so to be sitting in that circle and telling the ten or so other graduates that I had an autoimmune disease was cathartic. It was a total support group mentality. Half of the graduating group come to the DARS office three times a month for Braille class, and I can see why that option could be more appealing than what I chose to do which is to have my teacher come to my house and do one-on-one lessons. Those that meet weekly seem to have become friends; I even heard some of them talking about going to the clubs to party together. Imagine a bunch of blind people dancing with their canes.
My certificate has Braille printed over it, and because I can read uncontracted Braille now, it says:
Texas Department of Assistive Rehabilitive Services
In my previous post about Braille, I had just learned the letters X, Y, and Z, which marked the end of the alphabet and consequently, the first grade. As a follow-up, my teacher assigned me two reading passages accompanied by comprehension questions. My first reading assignment was about Al Capone (did you know he died of syphilis?), and the second was about Michelle Obama (did you know her father had MS?). That’s right, and I learned all that in Braille.
At first, it took me over an hour to read a page (which consisted only of two or three paragraphs each). But my reading speed improved with practice, as with most things in life. Eventually, it even became sort of fun. I would read while listening to the television, read while eating, even read in bed at night with all the lights turned out. It felt nice to be able to simply read again.
A slate and stylus for writing Braille
The other part of the homework, on the other hand, was more difficult. I use a slate and stylus (comparable to paper and pencil) to write my answers and often find myself forgetting where in my sentence I am or accidentally overlapping one line over the other, resulting in a blob of illegible dots.
Regardless, I’ve officially graduated from the first grade and have moved on to the second grade. Now I am learning contracted Braille where certain letters represent entire words, e.g. B is for “but”, C is for “can”, and so on. My teacher said it’s a lot of memorization, but isn’t that Braille in the first place? Contracted Braille is important to learn, though, because that’s the Braille they use in public on restroom doors, etc.
On Tuesday, September 21, there will be a mini-graduation celebration at the Division for Blind Services for those of us who have completed some milestone in our Braille education. It won’t be anything special, but it’ll be nice to meet others who share in some of the same frustrations and rewards that come with learning to read again, this time, through touch and not sight.
“Art is about more than what you can see. The essence of art is the connection that happens between artist and audience.” –from the Art Education for the Blind
Earlier this year, the Museum of Fine Arts (MFAH) housed the Your Bright Future exhibit. The curator of Asian arts was kind enough to offer us a private tour, but I recall still feeling gypped by the experience. So much of museum art is visual, and being blind, I could only “see” what others described to me. It made me ponder the existence of a museum where the sight impaired were allowed to touch the exhibits, feeling the crevices and texture unique to each piece of art. Or how about contemporary art that appeals to all five senses?
Because I am receiving vocational rehabilitative training through DARS for a career in the creative arts, my teacher forwarded along an email to me about the MFAH’s new Art Beyond Sight program which organizes tours for the vision impaired. While the email only stated that art will be described to the blind patrons, after googling “Art Beyond Sight,” I discovered it is a collaborative effort with Art Education for the Blind. AEB’s mission is to make art, art history, and visual culture accessible to the blind and visually impaired. It was founded in 1987 by Elisabeth Axel when her grandmother, an artist and lifelong lover of art, began losing her vision. As they visited museums together, they were dismayed by their lack of accommodations and services for blind and disabled people. “I was appalled,” she said, “that this could happen in New York City with all our wonderful museums, cultural riches, and openness to diversity.” A museum educator, Axel also knew that where there was a will, there would be a way to bring art to blind people, and that learning about, appreciating, and creating art would improve and enrich the lives of blind people as it does for sighted people.
Bridget O’Brien is the Tours Program Manager at the MFAH, and after emailing her here, I was immediately added to their contact list for upcoming Art Beyond Sight tours. The remaining scheduled ABS tours of 2010 are:
September 11 – 2:00 PM
October 30 – 10:30 AM
December 2 – 2:00 PM
This Saturday’s tour will only be the third time the museum has participated in the ABS program, and so they are looking for patrons who can give honest helpful feedback as their learning curve is still steep.
Art Beyond Sight is not just a MFAH thing but a program being put into action all over the nation and world. I am happy that it is a start to resolving my quandary on how as a blind person I could still enjoy visual art along with the rest of society.
These symposiums are usually held on the East and West coasts, and this year will be the first time it’s held in Texas. Dr. Benjamin Greenberg, the Director of UT Southwestern‘s TM and NMO Center, will host the event where clinicians and researchers will enlighten us on our disorders and the most effective treatments available.
John and I thought it would be a good idea to attend especially because Dallas is not too far away. Mostly, John said ignorance breeds fear, so we should be as informed about Devic’s as possible. But then we looked into registering and discovered that fees for patients and their family members are a whopping $225 per person!
The more I think about it, though, the more I think it’s still a good idea to go despite the price. I plan to contact UT Southwestern and see if I can get the graduate student price of $150. I mean, I am a grad student. Just a different field, that’s all.
UPDATE: Right after I typed the above post and was about to call UT Southwestern to ask for a discount, I got an email from the TMA stating that registration fees for attending patients and their family members have been reduced to $225 for up to a family of three. So now John and I can attend for the price of one. (I love “buy 1, get 1 free” deals.) Sadly, their reason for the reduced fees is because the symposium is in danger of cancellation due to a lack of registrants. I was about to call and ask for a deeper discount but then saw in the email that the TMA is already subsidizing between $20,000 and $40,000 (big discrepancy, no?) of the event and now will have to raise more funds to make up for the fee reduction. So I decided to suck it up and just be happy about the “2-for-1 deal. Now all we need is the “okay” from John’s boss that he can take vacation, and then, Dallas, here we come.
On Saturday, I flew 13,000 feet (or 2 miles) into the sky and walked out the open door of a plane. What was going through my head the whole time? That this is the craziest thing I’ve ever done.
For ten years, skydiving had been in the back of my mind. It was something I thought I’d try, but nothing I was ever proactive about. A group of coworkers and I had talked about it years ago, but since nobody ever organized it, I remained a skydive virgin.
Then I saw the Groupon deal a few months ago for Skydive Houston: $99 for 1 tandem skydive (a $179 value). I clicked the “purchase” button, and a couple of months later, Teresa, Joanna, Joy, Danny, Avelina, and I were scheduled to take the plunge.
We first had to sign four pages worth of legal documents mostly listing all the parties we cannot sue in case of injury or death. There were at least two or three places where we had to initial next to something like: “You may be seriously injured and possibly even killed.” Then we watch a ten-minute video with a man warning us that we are risking injury and death. Finally, we were paired up with our tandem instructors.
Because “sight impairment” was written on my application, I was paired with their chief instructor, Phil Schmitt. He assured me he would not put me in the way of any harm. I felt better knowing he had been skydiving for 21 years with over 10,000 jumps under his belt. When asked if he’s ever jumped with blind people, he said he’s not only tandem-jumped with blind people but also paraplegics and quadriplegics.
“I’m basically the guy that runs the place. I don’t do tandem jumps anymore, but they call me out when there’s someone with a special need,” he said.
Needless to say, he is the best instructor. He held my hand through the entire experience (literally and figuratively). He made sure I knew what was going on at all times from first suiting me up in the tarness to landing. He didn’t let me hit my head on the plane door. On the way up in the plane, he told me all I needed to do as soon as we exited the plane was kick my legs back and get my feet as close to his butt as possible, and he would take care of everything else. He described to me the scenery after he deployed the parachute. And while some of my friends landed skidding on their butts, my landing was incredibly pleasant; as soon as he told me to put my feet down, I felt a soft thud beneath my feet and basically only took a few steps and was done, safe on the ground. It was a cushion-y, cotton cloud-like landing.
My experience was not without some unpleasantness, however. I had some major motion sickness, especially toward the end of our five-to-seven minute drop (1 minute in free fall, the rest with a deployed parachute). I had this same motion sickness when I went hang gliding in Switzerland in 2001 but recall it being worse back then. If I ever do this again, I need to look into some motion sickness remedies. The nausea, though, could very well be attributed to my jangly nerves. Phil also said because my ears were popping during the free fall, something about my body not being in equilibrium could also be part of the nausea. Because I could not see the sights, 100% of my concentration was on how I felt and what I heard. The free fall felt like I was being blown full force by a huge fan. There was just a lot of pressure on the front of my body, and my face was frozen into a grin. (It was impossible to close your mouth when you’re going 120 mph down toward earth.) Even if I screamed, I wouldn’t know it because all I heard was the loud air rushing around me. I had my left hand clenched in a fist the entire time for fear of losing my wedding band. After the parachute opened, our bodies went from horizontal to vertical, and it was much quieter. Some of the parachute maneuvers made my tummy flip, but luckily, I made it to the ground sans vomit.
I couldn’t decide if I liked skydiving or not, but I did wake up in the middle of the night last night still thinking about it, reenacting the jump over and over in my head. The best moment was stepping off that plane and plunging into the clouds; it was an incredible blind leap of faith for me. Because the experience was so insane, I must still be processing it.
Phil told me only 1% of the world’s population has ever skydived, and that I had the courage to do it visually impaired. Of course, I think some things are better off not being seen. Like the open plane door that I’m about to jump out of.
Here is a clip from the video taken of my tandem skydive. Thanks, Phil, for getting me to the ground alive and safe. Let this be proof that a blind person can skydive!
P.S. I was told my skin is flapping in the wind. Pretty disgusting, I know. I’m picturing myself looking like those people in that “Black Hole Sun” video by Soundgarden with their melting faces.
Braille was created by Louis Braille, a blind Frenchman, in the 1820s. He originally designed it as a means to read music. Little did he know almost two centuries later, Braille would become a languaged used worldwide by blind people.
Louis Braille: Creator of the alphabet for the blind
Ever since I attended a seminar at The Lighthouse a few years ago, I had put “learn to read Braille” on my “to do” list. A Freedom Scientific rep was there, and he emphasized the importance of learning Braille if you’re blind. He was blind himself, and he said you are not truly literate as a blind person unless you know Braille. When you “read” by audio books, it is not true reading because you are being fed the words by someone else; you are picking up subliminal interpretations via the reader’s tone and inflections. So Braille is the closest thing there is to reading with one’s own eyes.
When I began losing vision in both my eyes six years ago, I thought I’d be able to get by the rest of my life simply by using my ears–after all, I can get most books in audio format (see some of the links to the right), and even the ones that don’t exist, I can get them recorded by certain non-profit organizations such as Taping for the Blind (read my post about them here). It wasn’t until this FS rep got up on his soapbox and made me realize I might as well utilize what skills I do have and improve myself by learning Braille.
I started off learning Braille by correspondence courses through the Hadley School for the Blind. While I learned some valuable independent living skills from Hadley, it was difficult for me to get very far with their Braille courses. Hadley is definitely a wonderful resource for the blind–their courses are free–but if you’re like me and need some external discipline, then it might be a challenge to get through the lessons in a timely manner. (I’ll still blog about Hadley and all their perks later.) So I ended up going through DARS for my Braille class. It’s nice because in addition to offering classes at their office, you can also request a teacher to meet you either at your house or location of choice and teach you one-on-one. This is what I do since I try to avoid the MetroLift whenever possible.
The face-to-face class offers me more discipline–my teacher insists we meet at least three times a month. There are 18 lessons to learn the entire alphabet, numbers, and punctuation. I started in May soon after the wedding and semester were over, and I’m happy to say I should be done with all 18 lessons before the school starts again in a couple of weeks. Today I learned W, X, Y, and Z. I think I only have punctuation left before I can graduate to the second grade and learn contracted Braille, which is a whole other story.
My progress has been decent. The first half of the alphabet was relatively a breeze, but once I started hitting the letters that used up more dot positions in the Braille cell (which has a total of six dot positions), my learning curve definitely started flattening out. I’m determined, though, and hope to one day be able to read Braille almost as fast as I once could read print. Stay tuned for more Braille lesson updates.
In 2007, I went to Japan and discovered the cool technology of using one’s cell phone to scan a barcode and then having all the information about a particular product pop up on the screen. We tested it out on the barcode on the back of the cardboard container of some McDonald’s fries. I thought it was so advanced and upon returning to the U.S., I told my husband (who was a new boyfriend at the time) about it.
“I already knew about this,” John said.
“Oh,” I said.
I should’ve known better. He is, after all, a total tech geek. In addition to being into computers, he is also entrepreneurial; he’s always coming up with new ideas, especially those that have anything to do with technology. And because he was an Apple fan before it was trendy to be one, and because his wife is blind, it was no surprise that he came up with the idea to apply all of the above into an iPhone app to help the blind.
Several months ago, he told me about this idea he had to utilize the iPhone’s camera to take pictures of the open source barcode and have the information contained within the code be read aloud on the iPhone (I’ll blog about this iPhone technology later). The blind person could create dozens of these barcodes–it’s free because it’s open source–and print them on labels and stick on whatever they need help identifying. For example, I would type “Campbell’s cream of mushroom soup, purchased on August 2″ into the open source program, and then a barcode would be generated with this information encoded in it. I’d then print the barcode onto a label and stick it onto the cream of mushroom can. I would do this for all the canned goods in my food pantry, and when I come back later in search of the cream of mushroom, I use my iPhone to take pictures of the different barcodes until I hear “Campbell’s cream of mushroom soup…”
You could make pages and pages of stickers and place them wherever to help with organization: items in the food pantry, the refrigerator, closet (“pink capris from Zara”), or medicine cabinet (“ibuprofen – expires June 2011″). This helps you find things quicker without having to ask someone or straining your eyes with a magnifier, thus promoting independent living.
I told John this was a great idea and that I would probably use it for the food pantry and medicine cabinet for starters, not to mention DVDs and books. He told his boss about the app since his company has been brainstorming iPhone app ideas. John was excited about developing this app, that is, until today.
This morning, he emails me this link. Apparently, this very app for the blind has just been released. You snooze, you lose, I guess. For $29.95, you get the digitized audio labeler and scanner. I just skimmed the article and cannot believe how closely it resembles John’s idea. I don’t know whether to feel happy that technological advances are happening for the blind, or sad because my husband’s invention idea is taken from him again.
There is a lot of excitement and pressure surrounding the first post of a new blog. So I decided to ignore all that and get straight to the point by simply blogging about the latest incident in my life that involved either eating, cooking, or not-seeing. And it just so happens to be the latter.
Today I went in for my second Rituximab infusion of 2010. (The first one was 13 days ago.) In terms sans physician’s jargon (let’s call this Rituximab 101), Rituximab is a mild chemotherapy that the pharmaceutical company Genentech brands as Rituxan. It is composed of mouse proteins (yes, those pesky little rodents). It is mild in that I don’t suffer from hair loss or nausea–only mild flu-like symptoms, e.g. fatigue, headaches, and body aches.
Rituximab is typically used for non-Hodgkin’s lymphoma (NHL) and occasionally rheumatoid arthritis (RA), but case studies performed by Dr. Bruce Cree in San Francisco have shown benefits for Devic’s too. The idea is to kill off the B-cells of the immune system which are linked to the nerve cell destruction associated with Devic’s, thereby eliminating (or at least slowing) the progression of the disease course.
I’ve only received Rituximab one other time, and that was in spring of 2008. I did not fare well as an outpatient at that time–I started breaking out into hives early on in the infusion–so the doctor ordered the expensive drug be pulled. In order to try it again, they took all possible precautionaries: the drug would be dripped at a snail’s pace over a period of 22 hours (instead of the usual three or four); I’d receive intravenous hydrocortisone, IV Tylenol, and IV Benadryl to minimize reactions; and I’d have to be in the care of an inpatient floor staff (read: overnight stays). The doctor ordered to have the 2,298 mg of Rituximab dripped over four visits, each one week apart. It was a pain to get through that round of treatment, but I was grateful nonetheless that I was able to tolerate the drug fairly well. (Reactions to the IV Benadryl and other issues with the hospital staff were not so great, but that’s a whole other story.)
This time, I petitioned with my neurologist to try it again as an outpatient–I figured I’d be able to tolerate the Rituximab better since it’s been in my system before, plus we could try all the precautionary medications again. I am happy to say I completed this Rituximab round beautifully in a recliner at the infusion center with next-to-none reactions (only mild itching the first session). And instead of doing it over four visits, I was able to complete it in two.
The aftermath effects are mild to moderate with the usual flu-like symptoms mentioned above. In a way, it’s a good excuse to take care of myself and not feel guilty for taking multiple naps in the afternoons, not to mention putting off daily tasks.
I imagine in a week or so, I’ll have to get the usual lab work done (CBC and flow cytometry analysis a.k.a. B-cell count). By monitoring those regularly, we’ll know when I need another round. The nurse said it could be as soon as six months, but I’m hoping for a repeat of the 18 or so months of clean remission.
Feeling my way through food, tasting my way through life. Supporter of the culinary and literary arts—food and words are my creative portals, the means through which I connect with others. Go ahead and leap—come feel and taste with me. Read More
