There's a world where I can goAnd tell my secrets to
In my room, In my room (In my room)
[In this world I lock out All my worries and my fears
In my room, In my room (In my room)
- Brian Wilson (Excerpted from the web page genius.com/The-beach-boys-in-my-room-lyrics)
A number of people have asked me where I've been and why I haven't published an article in more than two years. The answer is complex, I have been struggling with major depression and a related anxiety disorder for many years and the past two years have been especially bad times for my mental health. I want to discuss this here on the blog so others who may also have issues with mental health will know that they are not alone and that help is available.
As this is a personal essay, I am not going to include outlinks to sources. If there is something in this piece about which you would like more information, you can use google to look it up. If your question is of a more personal nature, you can feel free to write to me using the contact form on this site and I will try to get back to you in a timely fashion.
Where I Have Been
The title of this article and the Brian Wilson lyric pretty much sums it up, I've been in my room for the past few years. One of the symptoms of my depression is that I've grown tremendously agoraphobic, I feel terrible anxiety when I even think of leaving my home and have more or less stayed in my room since my dear Mia Lipner died on May 12 2019. When the COVID lockdown happened, I hardly noticed as I so rarely left my home or encountered other people except for my lovely wife Susan. In brief, I've turned into something of a hermit. I am working hard with my psychiatrist and my therapist to learn to reengage with the outside world but progress has been slow.
My History With Mental Illness
I was first diagnosed with depression by a New Jersey psychiatrist in 1983. She gave me some pills to take and we scheduled a follow-up appointment. I didn't like the way the medication made me feel so I stopped taking it and never went back to see that psychiatrist again. At the same time, I was abusing heroin and drinking alcohol to excess on a near daily basis.
I got off of the smack and moved to the Boston area in October of that same year. I had met a woman and, after knowing each other for three days, we decided to get an apartment and move in together joined by another couple with whom I remain friendly.
I took a job writing software continuing the kind of work I had been doing in New York. I stayed away from the hard drugs but consumed alcohol to excess almost every night. I would later learn that my alcohol abuse was an attempt to self medicate for the depression that was always with me.
I had a reasonably successful career writing programs for MS-DOS. I would, however, act impetuously and quit good jobs without considering all of the consequences. Because I was an excellent x86 assembly language programer, a very good C programmer and had a deep knowledge of DOS internals, I was always able to find another job pretty quickly so I suffered few negatives from my job hopping. I would continue abusing alcohol throughout these years.
As the 1990s progressed so did the deterioration of my vision. Microsoft Windows and the graphical user interface was replacing DOS and console based UNIX. Others thought that a blind person couldn't work in this new graphics based environment and people whom I counted on to get contracts and such stopped returning my calls. I reacted by turning into an all day drinker. I would arrive at the Cambridge Brewing Company near its opening at noon and stay there downing pint after pint until closing. Finally, I had enough and while drunk took a whole lot of pills. My wife called the rescue squad and after a night in the ICU, I found myself in the psychiatric unit of Melrose-Wakefield Hospital in Massachusetts. I spent roughly 72 hours in the hospital and was sent home with the recommendation that I start attending Alcoholics Anonymous.
This time, I took the professional advice and joined AA. I got a sponsor and attended one or more meetings per day for about a year and a half. Aa is not for everyone and if it doesn't work for you, I suggest finding another program or getting a prescription medication that helps stop cravings. Either way, it's best to surround yourself with others who are fighting as the social aspects of recovery are very important.
I joined Henter-Joyce in the autumn of 1998, before it merged with Blazie Engineering and Arkenstone to form Freedom Scientific. I was clean and sober and was put in charge of JAWS and MAGic and, after the merger, was promoted to the position of VP/Software Engineering. For the first five years I was there, I performed with excellence. Along with Eric Damery, Glen Gordon and Sharon Spenser, I helped drive JAWS from roughly a 35% marketshare to a near monopoly position at an estimated 83% share. We had crushed all of our screen reader competitors. This, however, did not come without taking a toll on both my physical and mental health. No matter how well we were doing, my untreated depression convinced me that it was never enough and that we could be doing even better. In my final 12 months with the company, I hardly slept at night and would be checking email, reading bug reports, communicating with our office in India and with our partners at IBM/Japan at all hours. I developed a severe case of repetitive stress injuries (RSI) and started taking heavy duty pain killers prescribed by my doctor to mitigate the constant pain I felt in my hands, neck, shoulders and forearms.
In my final six months at FS, I had become entirely irrational. I behaved recklessly, I spent the company's money frivolously, I traveled to meetings and conferences at which FS had no need to attend, I obsessed over minor projects and lost sight of the big ones like JAWS and PAC Mate; in brief, I blew the job of a lifetime. I loved working for Fs, I loved the team I had built there, I loved JAWS and felt a lot of pride about the features I invented and I enjoyed the prestige that came with being the guy in charge of the number one product in the blindness space. If the roles were reversed and I was CEO and I had a VP acting as I was, I would have fired him as well. I had become a detriment to the company and I had to go.
After getting chucked out of the job of a lifetime, I started seeing a psychiatrist and a therapist. I was also taking increasingly large doses of pain killers prescribed to me by my pain management specialist. Because I wasn't working, I spent much less time typing and sitting at a desk. The pain from the RSI started to fade and I stopped taking the pain pills. This threw me into a terrible state of withdrawal and I started attending an outpatient program five days per week at a Florida psychiatric hospital to deal with both my depression and my recovery from an opioid addiction.
In the winter of 2006, I started the blog BlindConfidential (there's a link to its archive on this page) and took on some small time contract work. When I wrote BlindConfidential, I would publish an article two or three times per week and did what I could to reveal all of the dirty little secrets of the access technology industry. This resulted in my gaining both a little fame and some notoriety and people started inviting me to speak at conferences and such again. I continued seeing the psychiatrist but had trouble finding a good therapist and went through a lot of them during this period. I still had the depression but things were pretty much under control.
It was through the blog and my Gonz Blinko persona that I would meet Mia Lipner, first online and later in person when I started traveling to San Francisco to visit with her a few times per year.
After knowing and loving Mia for a few years, she was diagnosed with an exceedingly rare soft tissue cancer. She would receive treatment and I did my best to help her out with a wide variety of tasks, including holding her hand as she received chemotherapy. Her cancer would go into remission but by august 2016, it had come back with a vengeance and was metastatic. Mia was probably going to die.
Then, on the same weekend in August 2016, Bill Acker and Joe Simparosa, two close friends of mine, both died. This would be followed by the deaths of quite a number of my friends and people with whom I would associate over the following few years. My depression and anxiety grew increasingly bad.
The last article I published on this blog was titled "Remembering Mia Lipner" and it discussed our nine year relationship. When Mia was still with us, I would travel to be with her in San Francisco a number of times per year and stay with her for weeks on end. I felt part of the Lower Haight neighborhood in San Francisco and I had made a number of friends there with whom I could hang out and enjoy conversations and other aspects of having personal connections. In the more than two years since Mia left us, I have not just lost a woman I loved very much but I lost a neighborhood and a community I enjoyed tremendously.
As Mia grew increasingly sick from her cancer, I grew increasingly withdrawn. I stopped talking to many of my old friends as all I could talk about was Mia and I didn't want to depress others as well. While in San Francisco, I would go out once per day for breakfast but started isolating from others – a common symptom of major depression.
In her last year alive, Mia's lovely mother would move in with her to help as Mia couldn't get out of bed any longer. I would fly to San Francisco but all I could do to help was by trying to make Mia as happy as I could. We would lie around on her bed and listen to audio books, podcasts and the occasional sports event. We would chat and make wisecracks as we had always done together. When I was on the east coast, Mia and I would talk on the phone four or five times per day and I would try to find items from the news, especially stories about animals, that I could repeat to her to cheer her up. As she neared the end of her life, Mia spent a lot of time asleep. I would talk with her when she was awake and hang out with her mom when she slept. Mia died on May 12, 2019, her last words to me were, "I love you too.".
My agoraphobia started when my time at FS ended. I would still go out fishing, to shows, to pubs and restaurants in San Francisco but I increasingly spent more and more time in my home and felt anxious when I would go out. In the time since Mia died, I have spent nearly all of my time in my room sitting on my bed finding ways to amuse myself with podcasts, audio books, sports, emails with friends and the occasional phone call. I did do some work from my room during this time but it was mostly favors for friends like Jim Fruchterman and Mike Calvo. I grew so withdrawn that I rarely called other people but enjoyed it when an old friend would call me. I have not left my home without the company of my lovely wife and terrific guide dog a single time in the more than two years that Mia has been gone.
The Good News
Over the past year and a half, I got a new psychiatrist and a really good therapist from BetterHelp.com. I am making progress fighting the depression and anxiety. I still take medications but I've also been doing things like starting to write again and making phone calls to others. This autumn, I'm going to try Transcranial Magnetic Stimulation (TMS) treatments to counter the depression as I've tried nearly every different antidepressant on the market and none have done me much good. For the past year, I've been taking guitar lessons and, when in Florida, leave my house to go to my guitar teacher's place getting me out of my room for at least a couple of hours each week. My wife Susan and I took a week long vacation to visit my family in Denver and, while I did experience a lot of anxiety, I was able to go out to restaurants every day we were there. We have spent this summer in our Cambridge, Massachusetts condo and I've gone out a few times while here and had guests over for lunch one time. This may not sound like much from a blind guy who had traveled to Singapore and India alone in the past but for me it's progress. Last week, I finally got up the courage to write this article and, as you can see, I published it on the blog.
I really hope that this piece can be helpful to others with a history of mental illness and/or addiction. I know how hard it is for me and expect it's similar for others. If you identify with anything in this article, please do leave a comment in the section below or, if you want to remain private, you can write to me using the contact form on this site. If you write via the contact form, please provide a descriptive subject in that field as I get a lot of spam that gets passed my filter from this site. But, please do reach out and I'll do my best to be helpful.
In this piece, I focus almost exclusively on the bad aspects of my life since 1983. The truth is that I had a lot of good times during that period. Working for a company called Turning Point Software was a delight, our team had a ton of fun there and enjoyed annual weird and wild trips to Las Vegas for a five day party. Unfortunately, in one of my more impetuous decisions, I left TPS after six terrific years there. My first five years at Henter-Joyce/Freedom Scientific were great and I had a lot of fun with the crew I assembled there. I remain friends with some former FS people and wish I was still in contact with more of those terrific folks. I had a great time with Mia for many years and we enjoyed going out to hear live music, comedy, author lectures and ate at lots of great restaurants. Susan and I have attended the QED conference in Manchester England six times and plan on attending it in February 2022. I continued to enjoy fishing but haven't done that in more than five years. So, there were a lot of good times to go along with the bad.
Over the past two years in which I spent mostly isolated in my room, a number of people have helped keep me going and believing that there may be more good in the future. First and fore-mostly is my lovely wife Susan who has taken very good care of me during this highly depressed period. Friends like Sina Bahram, Mike Calvo, Bryan Smart, my pen pal David from Louisiana, Lucy Greco, Francis DiDonato and Jim Fruchterman have been frequent sources of encouragement on the phone and by email. My father and I speak on the phone frequently and I always enjoy his intelligence and wit. I am very grateful to have all of these people in my life.
Mental illness sucks. I do not recommend going out and acquiring it. If, however, you do struggle with mental health, there is help out there. For therapy, I can, with some qualifications I describe below, recommend BetterHelp.com, it costs $250 per month but they offer financial aid to those who may not be able to afford it. I do not recommend isolating oneself in their room for years on end but, as above, I'm getting help and I feel that I'm getting a bit better all of the time. So, if you're struggling, get help and remember you can always write to or call me and I'll do my best to provide some peer counseling.
A Note About BetterHelp.com
I use BetterHelp.com and really like the therapist they assigned to me. I would, however, like to warn other users with disabilities that the BetterHelp.com web site has some major accessibility problems and that they are using the AccessiBe overlay in a poor attempt to become accessible. I use BetterHelp by using its iOS app on my phone but even there it isn't terribly accessible. I can use the features I need to use but there are aspects of BetterHelp I cannot use. BetterHelp has a competitor called TalkSpace but I've never taken a look at it or its site.