On skin allergy

I've been chronically suffering from skin allergy, at least since when I was three, for more than 46 years. The fear of itchiness haunting me and distracting me from focusing onto what I'm doing is so deep that I still really don't want to freely talk about it.

I will write about it anyway, however, to speak up about my own weakness, and unfair discrimination against me due to the skin allergy.

My history on allergic skin

During my childhood and teenage years I got a lot of severe allergic reactions on many parts of my body. The toughest one was on my right eye which caused cataract.

The second toughest allergic reaction was during May to June 2002, when the percentage of the eosinophils among the white blood cells exceeded 33% of the whole white blood cells, whose regular value for healthy people was between one to five percents. I was suffering from chronic oozing of blood and lymph from damaged skin on my legs and elsewhere I had to scratch due to simply unbearable itchiness. I was on the verge of sepsis, which would be lethal. I got hospitalized and had IV treatment of pulse steroid therapy for a few weeks, and had daily skin-protection treatment for two years.

The third toughest allergy-related attacks on my skin are chronic shingles appearing on my left inner thigh in 1979, and on my face and neck, on 1983, 1987, 1988, 1992, 1995 (twice), and 2002. Before anti-VZV medicine became available in 1990s, I had to suffer the pain of damaged skin and nerves for more than a week after every shingles attack. While I am lucky enough that no visual sign of shingles is left on my face, the deep and untreatable pain still often emerges, especially when I'm under a severe mental and physical stress. Fortunately, since 2002, I've never experienced a severe attack at all.

I am still suffering from skin rash, nevertheless, especially on my neck and genital area due to the chronic persistent damage. This is one of the reasons I don't want to wear ties and white business shirts; I usually wear cotton-made polo shirts or T-shirts and a loose-fit pair of pants (cargo or chino), to get rid of the possible sources of skin allergy.

Skin allergy is about the immune system

There are lots of misunderstandings on allergic reactions, and the medicines and treatments used to deal with the symptoms. I was one of them who didn't really treat the disease or symptoms in the right way until the year 2002, when I was 37. Note well: you need to discover your own way to find out how you treat yourself. My stories are not necessarily applicable to you.

Ointments, creams, or lotions with steroids are essential and necessary to alleviate or mitigate the irritation and inflammation. The problem is that you shouldn't use those with antibiotics unless absolutely necessary; they are often too strong. And when you use steroids, you need to monitor your immunological condition regularly (once a month or even more); otherwise your skin or immune system in general may over- or under-react and will cause a fatal consequence.

I should also say that you can't stop scratching your skin when you feel itchy. Can you stop the reaction of coughing or asthma? You can't (or otherwise you will suffocate). So don't advise the patients of skin allergy to endure the torture of itchiness; instead help them solve the systematic immune problem by consulting to a dermatology and/or immunology specialist. The treatment strategy will not be accurately defined unless checking out the portfolio of the white blood cells and other notable markers of the patients.

Discrimination against skin allergy patients

The social stigma of having skin allergy, eczema or dermatitis, is enormous in Japan. Having damaged skin especially on the parts of the body exposed to the public will significantly degrade the self confidence of the patients. The damaged parts of skin are not infectious to other people, but quite often the patients themselves are prone to get infected by the common germs and viruses such as staphylococcus aureus.

Japanese social norm of forcing all business people (especially men) to wear ties and white-collar dress shirts (which are also stiff and cause more damage to the skin) is inherently very discriminative to the patients of skin allergy. Quite often the patients are targets of bullying and social exclusion. The easiest way to solve this is to allow wearing the less intrusive shirts and pants, unless absolutely necessary due to the external or more formal dress code (which I try to avoid as much as possible).

Patients of skin allergy or any forms of allergic reactions should not be victimized just because they are suffering from the symptoms. They are suffering from diseases which are not responsible on their own. People should recognize some people need regular intake of pills and ointments to survive, and don't laugh at them because of the needs. I've once been orally harassed from colleagues when I took necessary pills after a lunch meeting.

What I've lost and I've gained

I've lost many chances due to the skin allergy. I have to stay in the area where I can get the sufficient medical treatment in affordable manners, and I should be very cautious on exposing myself in outdoor activities. I don't swim (though I can), because I don't want to get myself damaged by the chloride in the pool water or even the sea salt. I don't enjoy natural hot springs by the same reason.

On the other hand, suffering from skin allergy makes me pursue more modest way of life, and makes me very self conscious on the medical condition of myself. After all, you've got to live with what you've got and what you've got to suffer from.

I always thank my partner Kyoko for living together with me for 22 years, before, during, and after the whole allergic skin mess in my life. And I know it's not over so I've got to be very careful as always.

Computing with only one eye

My right eye has not been really functioning since 1982, when I was 17.

I wore cataract first in May 1982 while I frequently hit my right eye due to the strong itchiness caused by chronic skin allergy. Eventually I lost my sight from the right eye, and after a few eye check the retina detachment was discovered. I was immediately thrown into a hospital room, locked onto the bed with keeping my face up against the gravity (so that the gravitational force helped preventing further detachment) for three weeks, in June 1982. It was an awful experience for a young teenage boy.

I had to have another surgery on September 1982 because of the unfixed detachment again. Later I had another surgery to fix the squint in 1983, caused by the previous surgeries. And finally in March 1986, the swollen and white-colored lens cell (yes, the lens is a single cell) which had lost the transparency in my right eye finally got taken away.

Fortunately, the retina (not the Apple's high-resolution display) in my right eye is mostly functioning OK, though I really can't read anything with it, and I can no longer accurately identify the 3D depth any more. I usually ignore the sight coming from my right eye other than the level of the light.

I've been with the usability problem caused by the broken right eye for many years, long before I started professional programming. Fortunately I've learned how things get large and small when their distance changes, so I can sway to avoid getting hit from most of the things. I still can enjoy 3D movies, though I won't accurately focus anymore.

Things coming towards me from the right side, however, are hard to recognize. I've stopped operating any vehicles including bicycles; I don't have a driver's license either. You don't want to get into a trouble which you can easily expect, especially where the driver's seat is on the left side of the car, like in the USA or Canada. Japan is not, but that doesn't alleviate the problem.

During the age of 80x25 character terminals when DEC VT100 or VT220 terminals were popular in 1980s, my right eye disability didn't cause much trouble, because the whole screen fit very well in the visual space I could recognize. Even in the age of where 14" or 17" CRT or LCD displays, where the default aspect radio was 4:3 or 5:4, I didn't have much problem. I've written a lot of document and many pieces of code; fortunately none of them mandated me to tackle the three-dimensional loss of perception.

I have a few problems regarding my sight disability since the beginning of the 21st century, unfortunately. One of them is the color design; most web sites choose white as the background color, which interferes the black foreground characters I read. I try to choose darker background colors and brighter foreground colors as possible, but not all web applications allow to do so.

Another one of the 21st century problems is the change of default aspect ratio of the screen to 16:9; this is too wide for my rather narrow sight space. If you are watching a movie this wouldn't be a problem. I welcome high-resolution displays with crispier pixels and accurate positions. But when you write a text, this will be a serious problem, because you can't see everything at once. I always choose narrower horizontal size to keep the screen in my left eye's sight range.

So far I can manage the environmental change of computing in the past 31 years. I expect, however, the future computing models, including those require wearing glasses or assume three-dimensional recognition ability, may eventually reject me from the cutting edge of computing. Maybe I can ask Google to make a special Google Glass to compensate the loss of my right eye's lens and focus directly into my right eye's retina, with proper size adjustment so that I can see the things in two eyes again.

And I can assure everyone that you can write the code with sight disabilities; I know a professional programmer who has completely lost the sight too.

(Thanks Tyler Hannan, who suggested me to write this. I had been hesitating to write about my weakness on the web, but I thought this would be helpful to others.)