Welcome to my home page. I became blind at birth. I started programming computers at a young age. I also earned my general class amateur radio license, KA3TTT, a hobby to which I have returned with great joy. I practice Qigong, and consider it the most important thing in my life. I cook gluten-free vegan meals. I use Linux as my desktop and Android as my mobile OS. For the rest you'll have to read my blog.
I wanted to list some of my new year’s resolutions to bring everyone up to date on my progress and goals.
Catch Up on my Blogging
I’ll put this one first because I haven’t published anything on here since the summer, and some interesting things have happened.
I practice QiGong for two hours every day. I love it. I will have a lot to write about it as my practice continues.
Neuroplastic Pain Reduction Training
Along with Qigong I also underwent a process called Neuroplastic Pain Reduction Training with a woman named Helen Rice. It has taught me to think about pain in a whole new way.
I switched to Android.
I may as well break the news. It happened in the spring, I just wanted to wait for time to pass so I could gather an opinion, and I have needed to focus on my health. I have an Essential Phone. Several people have confused it with an iPhone X, which always makes me laugh. It goes much better with Linux, which I use as my primary desktop.
Switch to a non-systemd version of Linux
Speaking of Linux, I have had it with systemd. It breaks the Unix philosophy, and I end up cursing at it every time I have an emergency. Enough! I’ll likely switch my desktop and laptop machines to Slackware, specifically Slint64. I will also migrate this server to a new one running Slackware, which I have already purchased.
In case you don’t know, systemd refers to an init system for Linux. It provides system initialization functions after the kernel loads. I hate it.
Have Fun with Radios
I know I’ve resolved to do this a few times, but this year I really mean it. I have a general class amateur radio license. This summer I purchased a Kenwood THD-74A as a birthday present. I still need to really use it. I want to have as much fun as possible from my city apartment, a hostile RF environment. I also want to venture into the world of software defined radio.
I have wanted to write a bulletin board system since running one as a teenager. I made a first serious attempt a few years ago, and learned a lot. I began the new version before my health issues started. A client ripped me off, which burned me out on programming for the rest of the year. The BBS needs to return. Before the internet we would run our own small social networks, though we didn’t use that term then. I have a coherent vision and intend to implement it in Ruby.
I want to learn a functional language, probably Clojure. I don’t know if it will happen this year, but I enjoy learning new ways to think. Lisp has such a rich heritage.
Mystery Fun Projects
A few other fun projects might happen. I wrote a popular BBS door game which some people apparently want to see revived. I have a few interesting ideas about spreading accessibility awareness. I will likely write some code related to internet radio. Who knows what else?
I wanted to give another update on my health. At the end of my previous update I had started taking artificial tears and ointment indefinitely, and had a new pair of glasses. I had resigned myself to this routine for the rest of my life. I have had a long time interest in meditation and the like, so decided to try acupuncture and traditional Chinese medicine.
I went to get a haircut at Citrus Hair Salon, one of the only places in the city where you can get your beard trimmed well. While making conversation I mentioned my interest in trying acupuncture. The barber, a woman named Juju, comes from the Philippines, and said that her grandmother would use it because they could not afford more expensive healthcare. She recommended that I go to South Philly Community acupuncture, so I made an appointment. I had no idea what to expect.
I had my first consultation in a private room, though subsequent sessions would occur in a community area. Justine, a licensed acupuncturist, asked me a number of questions about my medical history and reason for seeking treatment. She explained to me that the energy meridians of the liver connect to the eyes. Anger imbalances the liver, and I wondered if that explains why so many blind people seem so damn angry.
I lay down on a heated massage table. Justine diagnosed me by feeling the pulses on my wrist. She explained that reading pulses has its own branch of study in itself. She said my pulse felt wiry as often happens to someone in pain. I said I felt in pain and completely exhausted. I also felt a little nervous about needles.
Before beginning I asked if I could touch one of the needles. They feel very thin, like a piece of hair connected to a thicker stalk. She inserted into two points over each eye. It definitely hurt a little but I wanted to persevere. She put in two needles at my temples which felt great. She also put in some needles in my legs for my kidneys and liver. She put a final needle into the crown of the head, and I had already begun feeling energy gathering there.
I had a problem though. The needles over my eyes had seriously started to hurt. They brought up pain and I could feel it clearing, but I didn’t know if I could take it. I almost called out. Suddenly, the needle over my right eye, the worst one, fell out. The pain went away. Later she said that meant that my body had enough. After the session I felt like something subtle had changed. I felt less weary.
I went back for my second session four days later and then it happened. I felt so relaxed. I went in with no expectations and an open but critical mind. Half way through I felt all the pain fall away. For the first time I went back to the time before I had any of this horrible pain. I could then expand this state like I had already learned to do in meditation.
That convinced me. Justine crafted me a custom herbal prescription. I began acupuncture regularly. A few weeks went by but something didn’t seem quite right. Justine said the herbs would take away the gross night sweats which I forgot to write about before, but they mostly continued. On that Sunday she emailed me. She wanted to make sure that I knew that the prescription said to take five grams twice a day, but that the scoop only measures one gram. I had cautiously assumed that one scoop meant one dose, so had taken one scoop twice a day. I had taken one fifth of the amount. As soon as I began taking the proper amount the night sweats went away. I’d pay for that alone.
Along with treating the evident physical symptoms, we also began working on the related less physical ones. Chinese medicine really shines here, because it also addresses the anger, depression, and general lack of energy that comes with chronic pain. I have heard it compared to pealing away the layers of an onion.
A few times when I have felt especially irritated, they have given me an ear seed. This involves taping a mustard seed to an acupuncture point in the ear. In this case they use one called Shen Men. If you feel like you need an extra boost you can press on the seed. Celebrities have gold plated stubs. I’d prefer the mustard seed. They can move mountains.
The traditional Chinese medicine system also includes QiGong, its own version of yoga. I decided to give it a try and immediately fell in love. I have searched for an energy cultivation system for years and have finally found it. Specifically I learn Medical QiGong, which for me includes exercises focusing on the eyes and liver. It deserves an article of its own.
Justine recommended my QiGong instructor named Iris, and we meet once a week. I practice for an hour or two on most days. Even my meditation has become integrated into it. Iris told me about some Taoist techniques which I find quite powerful.
I have become convinced that denying the existence of Qi, the life force, has led us to our current state in western society. We feel like we have collectively lost something. We deny the life force and wonder why we don’t care about life. I found it in QiGong, and I never would have started learning it if I didn’t have my pain. The universe works in weird ways.
I learned something interesting. In Japan, blind acupuncturists have a deserved reputation as some of the best. This article tells a powerful story about the first blind acupuncturist, and caused me to have a healing awakening. An acupuncturist described it as like reading braille in the body. I realized that I could transfer my braille reading skills to energy healing and everything fit together
A few weeks ago I had my three month follow up appointment at Wills Eye. I considered this a day of judgment. I wondered if all of my alternative medicine did any good. The cornea specialist felt impressed with how my eyes looked, relatively speaking. During our last visit he mentioned a “Minor procedure” to scrape off the calcium, but recommended against it because it might further damage my eyes. This time he added the detail that it would cause intense pain for two weeks, and said that my eyes looked better enough that I did not need to consider it. Good!
I noticed that I had better muscle control when asked to move my eyes around during the examination. I have done this since birth so know the drill. Before I could hardly exert any control, but now my eyes felt much stronger. When I first came I ranked my pain at 7-8 out of 10. Now I’d say 0-4 out of 10. My efforts have worked and I have the results to prove it.
I want to make something clear before I close. I have not thrown away western medicine. I have exhausted its limited options. The two systems compliment each other. Community acupuncture centers charge on a sliding scale, and I have never felt pressured. Justine recently told me that she does not want me to become a professional patient. I also wanted to mention that even though I only wrote about Justine, I have had great experiences with all of the acupuncturists I have worked with, including Nicole, Kelly, and the owner Lauren. The receptionists all know me as well, and we often end up chatting.
This pretty much brings things up to the present. I went to acupuncture twice a week, and have brought it down to once a week. Eventually I should only need to come as needed. I have QiGong class once a week, and spend a lot of time focusing internally.
I have had low energy and have slowly begun getting it back. It feels like waking up from a very long sleep. I know myself and don’t want to rush back into things. I need to take it easy. I also plan to only work on my personal projects and current obligations. I need to consciously control my stress and anger levels. At least I have my system. I will likely have another exciting health update in the future about something else Iris told me about, so stay tuned.
Technical.ly Philly published a wonderful profile about me as part of their series about accessibility. The article pretty much speaks for itself. My eyes hurt a lot today, so it cheered me up.
I always enjoy going on The Pulse, a news show on WHYY, a local public radio station. This time I said a few words about video games for the blind. The interviewer compared audio driving games made for the blind to having a backseat driver. This made me laugh.
A clip of the game Top Speed plays while I talk. I enjoyed playing that game when I ran Windows back in 2006. That game had heart. At the time I didn’t care that it acted like a back seat driver. We didn’t have a choice.
The article discusses an interface designed to make racing games accessible. I like the idea. I haven’t tried it, but wouldn’t mind. I tried playing racing games with my brother while growing up. We found it difficult.
I didn’t know that Electronic Arts has started considering accessibility. In college one of the other guys had the first steering wheel for the PC. Another guy once wondered if I would like to try driving his car in the parking lot. After I tried playing the Need for Speed he rescinded his offer, probably for the best.
A good racing game models the real world. If we can design an interface to navigate a simulation, then we can design one to navigate the real world. I consider this the most profound realization of this experiment. Enjoy the article.
My world has changed in several Essential ways of late. I usually don’t share personal health problems, but I figure that I’ll have to explain this to a bunch of people, so I may as well put it on my blog. It might also help someone else in a similar situation.
I have an eye condition called Retinopathy of Prematurity. I used to go for checkups all the time while growing up, and I had two surgeries. My condition more or less stabilized by the time I became an adult. I thought I didn’t need to worry about any more eye problems. I thought incorrectly.
One day in 2005, my left eye felt like shards of glass had ripped it apart. I went to my retina specialist and he said that my cornea had hemorrhaged. We treated it with atropine and Prednisolone eye drops. Every so often it would flare up and I would use the drops and they would work.
Nothing unusual happened for a few years. I moved into the city. Once in a while I would use the drops, including when I went to Belgium. In general though I didn’t think much about the health of my eyes.
That changed a month ago. My eyes started hurting and the drops didn’t help. I became concerned when it didn’t stop. I made an appointment with a retina specialist at Wills Eye for Friday. This happened on a Monday. I kept taking some old drops and waiting. Finally Friday arrived.
The retina specialist said that my corneas have begun getting thinner due to not seeing light. They have also begun calcifying. This gives the corneas an uneven surface, and my description of it feeling like sandpaper or glass comes pretty close to the truth. He said I’ve likely had this with me for a while. It happens as a result of my eye condition. He recommended using artificial tears and lubricating ointment, both over the counter. He recommended against the prescription drops because they might further damage the eye. We do not want my corneas to get a hole. He recommended I see a cornea specialist which i did a week later, and he said the same thing. I will go back in three months and we will see how things have progressed.
Meanwhile I have to deal with my problem. As it stands I still have painful times, but I do think my eyes have slowly started healing. Sometimes I wish I could use something stronger, but I understand the reasoning and agree. This really has changed everything. It has affected me physically and psychologically. I wanted to note a few of the things I’ve done which have helped.
The pain has affected my posture. I can’t help it if sometimes I have to curl up in my chair. Simple stretches can help with that, and I love my massage pillow. Floating feels amazing. It helps with the physical issues as well as stress.
My productivity has reduced. Somehow I have kept working. I have an even weirder sleep schedule than usual. Sleep deprivation really affects me. I can’t help it if my eyes keep me up until 05:00 AM.
Meditation has become an act of physical rebellion. I’ve meditated since I became a teenager, and it frustrated me deeply that I couldn’t do it. For a few days I kept trying to find my center, my eyes tearing up with pain. Finally I began to find a little oasis, and gradually I could begin expanding my awareness in these little pain-free points. I don’t think I could have done this without years of previous experience. I remember one night I sat down to attempt another meditation. When I finished I didn’t think much time had past, and gloomily checked the time. To my delight I had spent twenty-five minutes, a respectable length. This whole experience has further convinced me of the benefits of meditation. I’ll have more to say about that in the future.
I added a turmeric supplement to my daily regimen. Curcumin, the active ingredient, has strong anti-inflammatory properties. It has a long history of safe use in the long term. It can’t hurt. Anyway, I love Indian food. Scientists found that a chemical in black pepper boosts curcumin’s effectiveness 2000%. The ancients got it right yet again.
I quickly learned that ice packs bring immediate relief. Sometimes I will just wrap some packs around my head. Sometimes I will hold these little packs on my eyes with a towel. I also have an eye mask, but of course it has holes cut out for the eyes, since most people want to see out of them. Not me! I want them covered with nice cool gel.
We have dry air in the winter, and having forced air heating in my condo makes it even dryer. I finally got a real humidifier, something I meant to do for a while. I even scored a good Amazon Warehouse deal. The description said that it had significant cosmetic damage to the top and sides, but I didn’t care. After I got it, a sighted friend said that she could see nothing wrong with it.
I immediately noticed the difference when coming up into my loft. I can verify the change in humidity with my Nest thermostat so I know it works. Not only does it help my poor eyes, it also helps my poor electronics. This winter my computer rebooted after I zapped it with a static electric charge. Goddess only knows what that has done in the long term.
As the days have begun getting lighter I discovered something else annoying. My eyes have become sensitive to light. The bright light of the sun, once a source of comfort, now stabbed my eyes relentlessly. I had looked forward to going back onto the roof deck when it got nice, so I knew I had to take action. For the first time in my life I considered wearing sunglasses.
I remembered getting some mirrored glasses while really young. My parents went to some auction and I felt fancy wearing my cool glasses. I liked how they made my eyes feel, but I couldn’t quite articulate that as a child. Later in middle school my mobility teacher tried getting me to wear some special ultraviolet blocking sunglasses, but they looked too dark and gave me a headache. That put me off to sunglasses.
I decided to try a pair made by Foster Grant from CVS. They provided a little relief, enough to convince me to go for something more higher end. I went to inner Vision Fine Eyewear, and met Lauren. I first called on the phone and briefly explained my situation. When I arrived she showed me a pair of Maui Jim Guardrails. I liked them as soon as I put them on. Lauren had me try the next lighter lens, but I noticed the increased light, and went with the darkest, the neutral gray, the one with the greatest light reduction, and the only one with mirrored surfaces.
I noticed an improvement right away. It reminded me of wearing the mirrored glasses so many years ago. It makes the light appear softer. Instead of having to squint away from it I can relax into it. Of course if my eyes hurt then it doesn’t matter, but even then it seems to take the edge off. Wearing glasses also prevents me from rubbing my eyes, which further aggravates my corneas. They also look cool according to several friends and family I trust.
That brings things up to the present. If I don’t start feeling better sooner I will call back. I can’t do this for three months. I do think things have slowly started improving, and I’ll take that over slowly getting worse. For a few days it really started feeling good, but then it flared up again, teasing me like the record breaking temperatures outside. At least I got to test my cool shades on the roof deck.