When The Low Points Hit.

This blog is about my story of visual impairment and sharing what I have learned with anyone who wants to read it. So far I have written about my eye condition, about working with a visual impairment and some things that I have learned along the way. I have focused on the positive so far and talked about proactive measures that I take that I think are useful to share. But I haven’t talked so much about the things that I really struggle with, the experiences that I go through which I usually keep more private. I am going to talk about my own experiences of anxiety, depression and even desperation that I have been through. I think this is important so that I can convey a fuller more real representation of what someone with a visual impairment can go through.

I like stories of spirit and determination and it is this kind of proactive, go out there and make noise attitude that is most likely to make someone succeed but without also sharing the bad times, the faltered steps this message becomes less credible.

I read an article by a blind developer a couple of years ago where they said that with all the tools of the modern day there is nothing to hold blind people back from a career in software development. It painted a picture of easy street and success and said nothing of the very real hurdles to achieving a successful career. When I first read that initially I felt bad as I was experiencing lots of hurdles and figured that if it was really so easy then I must be not intelligent or not gifted enough. Now I just know that that article had no credibility, I think it was designed more as an addition to his CV to help him get more work or something like that.

Depression is one of the hardest things to go through and it is also deeply personal so for that reason I can only talk about my own experiences and my own thought processes. I don’t have depression but I do go through short periods of it which I refer to as low points. Longer term depression is not something I have experienced since my early twenties. I remember what it felt like and I am relieved that it seemed to just be a phase of a couple of years that I went through while trying to work out who I was and how I fitted in. Now in my early thirties I have figured out the biggest questions and feel comfortable in my own skin. Now the low points I go through are not related to hormones or fitting in but as a direct consequence of my visual impairment.

I have an undiagnosed condition where looking at near objects causes me intense pain. All manner of lenses, eye training and dietary changes have failed to make a difference and if anything the condition is worsening over time. I have chronic pain in my eyes and a secondary headache which also never goes away.

There are three factors that can cause me to spin into a brief spell of depression. It doesn’t happen that often, every few months I suppose, and it usually takes more than one of these factors to push me into it.

The first factor is a feeling of frustration. This could be because of a bad day where something or many things went wrong on my computer, or I was under lots of pressure to get something done quickly but struggled to do it or that I am performing a task that is much harder now than it was when I had normal sight and this memory surges up a venting of frustration at my situation. This type of stress is acute and related to a specific things I am doing.

A second factor is a general anxiety about the future. There have been many changes in my company, lots of lay offs, changes in technology and I have felt really vulnerable at times and feared that I will lose my job and not be able to afford my rent and pay for the costs of my young family. I have more uncertainty about the future now and feel a background anxiety that I won’t be able to provide for my family, that I may not have a successful career and so on. I am not saying I am expecting to get fired or I am expecting to fail in my career because I really don’t think that but sometimes I have periods of doubt that aren’t fully rational. This stress is like a constant low level background stress that I haven’t managed to shift and that can spike when triggered by some other event.

The third and for me the most influential factor is the chronic pain. I would say that in the vast majority of cases it is when the pain is bad that I enter a low point.

It is true that you learn to deal with pain to a certain extent, it becomes normal so you just try to ignore it and carry on. But sometimes the constant unrelenting weight of it wears me down. When it gets bad I can’t ignore it anymore, I can’t think and a feeling of panic starts to envelope me. I think it is because I feel trapped, it hurts and I want to stop but there is nothing I can do except keep my eyes closed and turn the lights down. I know it will alleviate a little in a couple of days but right now in that instant I am powerless.

It doesn’t take much to push me into a slump when in this state. I could have a bad day at work which triggers my fears and insecurities and suddenly I fall into a state of desperation. Once it starts it grows rapidly and I start wanting out, wanting an escape from the pain. I just want it to stop, to leave me alone but it won’t. I am now fully in a state of helplessness, frustration and self pity.

The feeling of desperation doesn’t last too long, may be  a few hours or a day. But when it is gone it leaves me drained and depressed for a few days and there is nothing to do but to wait for it to lift as the pain lifts.

I have learned that there isn’t anything specific I need to do except acknowledge that I am in a low point, not get too carried away and know that it will lift on its own in a day or so.

The key is expecting it to come along and knowing it doesn’t last. When you’re in it things look bleak and it can be hard to see that there is a way back up. Now that I have had my share of low points I can deal with them better as I know, even if I don’t feel it at the time, that the cloud will lift and the world really is a wonderful place. I live in a wonderful country which is beautiful and has warm and open people. I have two amazing toddlers and a loving wife. I have forest and hilltop views within 5 minutes of my house, no car, no loans, no credit, I have my distance sight and a healthy body. I guess I feel a little ashamed when I look at all the amazing things there are about my life. If pain is the cost of seeing then I’ll take it openly with both hands.

There will be another low point though and that is ok, it won’t last and soon enough I’ll be back to striving for a better life for myself and my family, and even a better life for those around me who I can help in some way.

I do think I am doing ok in general. I have come a long way with my skills with a screenreader, with how I tackle my job and I think I have some positive and practical lessons learned that I can share with the world. I will keep on learning, keep on improving and hope one day that I can be a mentor to someone who needs help. But no matter who you are and how capable you are I think that these low points come around and I want to acknowledge that. I don’t feel like a failure because I falter sometimes, I am not superman, I’m just a regular guy who has to deal with issues that sometimes get the better of me.

Eye condition update. New glasses a big fat fail

The new glasses that I got prescribed by the optometrist at the hospital ended up causing a pain flare-up and I made the decision to stop wearing them just in time. I think if I had left it another day I may have had a full blown pain flare-up that could have taken weeks to recover from. I’m already on the mend from a previous flare-up  so I really don’t want to be back there. But while the pain sucks I am glad I tried this new attempt at fixing my issue, if I hadn’t tried it I would be wondering if somehow new lenses were the simple answer. I don’t want to be questioning myself about what if’s and may be’s.

The lenses were much stronger and were optimized for near focusing at the expense of distance sight. I was instructed to wear them all the time. But all the time I wore them I felt my eyes being taxed. It was like a constant pressure on my eyes and the pain rose slowly each day until after a couple of weeks I couldn’t take it anymore. It has been three days now and my pain is going down again slowly so I am relieved.

I had pretty much 0% expectation of the new glasses helping given that I have been wearing the correct prescription the whole time I have had this condition, though I wasn’t expecting it to make it worse.

Trades

I mentioned recently that I work in my personal time on improving my knowledge and skills with the tools of my trade and my abilities to use the corporate websites and systems. That is one of the trades I make with my employer. If employing blind and visually impaired people didn’t involve some cost or some sacrifice on the part of the employer then we wouldn’t be in the situation we are in today where only 20% of the blind work and then in the lower echelons of the career ladder. I think we should continue to push industry and promote industry into employing more blind people and I which more could be done to help the blind into work. But on a personal level there are things that can be done to help you through the door and then build a career. It is all about trades you and your employer make with each other.

In my situation my employer has spent money on accessible technologies for me and has accepted that I can no longer do some of the activities that I was hired to do. That is a sacrifice on their part and I am grateful that they have been so willing to make them. So what do I have to trade in return? What do I have to offer that pays back that investment and sends a clear signal that they made the right choice? Because we are talking about a business here. We are in a difficult economy, costs are being slashed, workers are getting laid off. I have seen entire departments let go in my company. So in that climate they have invested in me and I believe I should offer them something back in return. I don’t believe in being entitled to a job, I have to earn it whether I have a disability or not.

My first trade is passion. Passion is a funny thing, it’s not something you can cultivate, you either have it or you don’t. It wells up from somewhere inside and touches every aspect of your work. In my case I feel lucky to be passionate about my job and my work. Many people don’t have their work as their passion, for them their passion lies elsewhere, in a hobby or something like that. For me to be passionate about my job and the work I do has really been one of the things that has helped me through the last two years. It not only kept me going when things looked bleak but also my employer saw that I was committed, that I wanted to do the right thing, that I cared and I believe that is probably the number one reason why my boss is still happy with me and my work today. Passion isn’t something that can be taught or cultivated, you are passionate about your work or you are not. So if you are looking for work or looking for a career then try and do something you have passion for. Something that will carry you through the difficult days and something that will bring out your energy and enthusiasm. Employers note that and they value it, you’d be surprised how important that is in fact.

Passion leads me into my second trade and that is attention to detail. I am a mentor to one of the juniors in my team. This guy is great and I have naturally built up a strong relationship with him. He is a developer like me but he lacks confidence in himself and his abilities and his technical skills are a bit behind the other juniors. But he is the most dependable guy in the team, his attention to detail is second to none and when you need something doing that is super important then he is my first choice every time. If I decided tomorrow to quit my job and start a software consultancy and I could take one team member with me, it would be him. He’s not got the best technical skills in the team but that can be taught. I could sit him down, one to one, over a period of weeks and get him up to speed. Technical skills are skills that can be taught and learned. But he cares about his work. I don’t mean that his day to day activities are an important part of his life. I mean that he cares about doing things right, as a philosophy. He hasn’t been taught that in school. May be its because of his upbringing or may be it is just part of his core self but he cares about doing things well and in the right way. So hands down he is my first choice. That is my second trade.

I really care about the quality of my work, it is really important to me. I don’t necessarily care about the product or system I am creating, mostly that is business operations software. I care about doing things right and I care about the users who use the software I create because I don’t see the point in creating something that people hate. But I have been continually amazed that not everyone thinks like this, to a large proportion of people it is just a job, you come at 9 and you leave at 5. Get the pay check and forget about work till tomorrow. I admit that I find the work life boundary difficult. I often think about work in the evenings but I don’t see it as a negative. I like my job, I care about it, I care about the little things that mean a lot. So I might not be able to write as much code as some of my colleagues but if my bosses see these traits in me that I see in this junior then I have my answer for why my boss continues to be happy with my performance.

My last trade is time. Sometimes it is just some project work, sometimes it is learning how to accomplish a new task and quite often it is listening to a technical book regarding a technology or a problem we face in the team. I mentioned this in an earlier post and I think it is important but I also recognize that it is not necessarily the solution for everyone. Simply put, I work harder and put more hours in than my colleagues. It is my way of tipping the scales which start out in their favour and leveling them out a bit. If a task takes them 6 hours but it takes me 9 then sometimes I will absorb that in my personal time.

One of my most productive periods is between 11pm and 1am. I have always worked extra hours, it seems to be a part of me and now that I have vision problems I am grateful that it seems to be part of my personality. I like working and don’t see extra work during the evening a chore, at least not all the time. I’m not suggesting that the entire working blind population should be forced to work long hours to keep their job, but if you are serious about a skilled and challenging job then working extra hours cannot hurt. It all comes down to how much you value a career. For me a career is massively important to me, I need to work and I know that we live in a world where the wind is not on my side. So it is a personal sacrifice that I make and it is another thing I trade with my employer in return for a challenging and rewarding job.

Another specialist, another referral

I had a busy week of doctors and hospital visits this week. Three specialists in three days, not bad going. It ended up this way as my neuro previously referred me to an ophthalmologist who then referred me to an optometrist. Both ophthalmologist and neuro wanted follow ups so I saw the optometrist on Monday, then the follow up to that with the ophthalmologist on Tuesday and the follow up to that with the neuro on Wednesday.

So the optometrist said the cause was that my glasses needed to have stronger lenses. I explained that I have been seeing opticians regularly and that having the correct prescription hasn’t stopped the pain but there was no convincing him. The ophthalmologist recognizes that there is something mysterious going on but has no clue and says it must be neurological. My neuro has no idea and now I am being referred to a doctor similar to House. This doctor is a diagnostics guy who diagnoses weird and rare cases and his focus area is pain and vision problems. So he seems like my match made in heaven. But he decides which cases he takes on so there is no guarantee he’ll see me. So I’m crossing my fingers and toes. In the mean time I have a wait of a few more months.

I got the new glasses and they are indeed significantly stronger than my last pair. I feel 7 feet tall as everything looks further away and I feel like I am higher above the ground. My depth perception has gone and I feel like I’m looking at the world through binoculars, everything seems flat. The optometrist said they are stronger than a high street opticians would prescribe as he wants to help my eyes more with near focusing at some cost to my distance sight. Let’s hope his experiment works but I’ve been through this drill before.

I’m pleased with progress though, this House like doctor sounds like the most promising news I’ve had so far.

Variety, the spice of a Knowledge worker’s life.

When I say knowledge workers I am talking primarily about people who use a computer most of the day, that and a telephone, and use their skill and intellect along with a few specialist tools to add value to a business’ operations. So people like project managers, business consultants, service delivery managers, software developers, business analysts and so on and so on. These jobs tend to be both challenging and rewarding with a lot of variation of activities day to day. One day they might be coordinating some project, the next they might be putting together power point presentations or Word documents, then there are the meetings, internal line of business corporate websites, lots of email and meeting arranging.

This kind of landscape can be extremely challenging for a blind or visually impaired worker. Change is hard, the more different activities you have to perform the greater investment in time and effort to learn how to accomplish the tasks. All this time then impacts your productivity and your confidence. It could be a simple request from your boss to do something. This task would be nothing for a sighted person but for you it could be yet another task which requires a proportionally large amount of effort to work out how to do. There is this constant barrier around you, it surrounds you and tries to keep you from getting out.

I think this is probably the greatest day to day challenge I face but one that can be overcome. Blind workers aren’t necessarily less capable, they just need to spend more time learning how to perform all the required activities. This means either taking company time to do it, or taking personal time. The problem with spending lots of training time while on the job is that productivity can suffer. While your colleagues are actually doing the work you are learning how to navigate this new area of the application or corporate website. So you could spend this time at home and invest in your skill sets during the evenings.

For me personally I take the home learning option as it is important to me to be as productive at work as possible. I am often forced to learn some new aspect of an application or website while at work but generally if I can defer it to the evening I will. I think there have to be trades on both sides. The employer is investing in some extra cost just by employing a blind or visually impaired worker due to accessible technology costs and some cost to productivity. On my part I trade some of my personal time to improving my skills with the tools of the trade in which I work. It’s not something that I am always super happy about but in today’s world, when you look at the numbers for employment of blind people, then I think I have to put in that extra effort. That’s the cost of entry into a highly skilled and variable job. I’m not saying that all blind people should work long hours mastering the software tools of their trade but it is definitely something that I feel I should do to add the proper value to the business.

This is where the waters start getting murky. Getting and keeping a job is based on the most part on merit. People are not just entitled to a job, they must prove that they add value to a business in order to get and keep the job. This is how it has to work as all businesses are at the end of the day are money making machines. But the blind don’t compete on an even playing field and while still not entitled to a job without consideration for merit, there should be some slack given and also more support. So I don’t expect to be evaluated against my colleagues using the exact same yardstick, given the same tools and support as them. To do my job I do need extra tools and I do need extra support but I also need to demonstrate that I am committed to my role and that I put myself into the job. If I were an employer and I saw one of my employees didn’t care and didn’t put much effort in then it wouldn’t matter if that person was sighted, blind or whatever, I would be looking for a way to swap that person out for someone else who was committed to the job.

For me my job is part of me, it feeds me and so I am willing to put in extra effort on a daily basis to provide the value to my team and my company as a whole.

But the barriers are high and I think that if we want more blind and visually impaired in skilled roles then we need to lower those barriers. I have struggled and still struggle to keep up with the varying demands on me at work and while I manage to keep on top of it all I wish the cost were lower. I am willing to invest my time butthat doesn’t mean to say that I don’t wish it were easier.

So that is something that I am thinking about a lot at the moment. How can these barriers be lowered a little? What ways can we get more support to people who want to rise up the ranks, or want to succeed in a skilled business career? As I said earlier I think that mentoring is part of the answer, one piece of the puzzle. I will be exploring mentoring and other topics related to helping people succeed in their careers, or even getting on the career ladder, over the next few weeks.

Finding a mentor

I look back on my first year with my vision impairment and I see so many things that I could have done differently. I was in new territory and it was a dark and confusing landscape and I really struggled. Not just with the difficulty of doing what I had done effortlessly before, but an overriding frustration and bitterness at the whole situation. I was a software developer with ambition. I took pride in my work and I took pride in knowing the most and producing the best software in my team. I had my career on track and I was enjoying my work. Then suddenly I couldn’t do my job anymore.

At first I took 3 weeks off thinking that my eyes would recover with some rest and an updated pair of glasses. But weeks turned to months very quickly. At first I worked over the phone with one of the juniors in the team. He was my eyes and fingers and I was the brain. He got a few months of training and I got the ability to carry on working. When it became obvious that there was not going to be a fix anytime soon I persuaded my employer to get me Jaws so I could do my own work again. A couple of months later I got it and was pretty horrified at how difficult it was to use.

The difference between seeing a screen and hearing a screen was shocking. When I looked at a screen my brain effortlessly processed the images for me. I looked and I understood. It all just made sense, instantly.

To then only knowing about one element on a screen at any one time, and that being a sound and there not being any sign posts to where the tab key might lead me left me paralysed at first.

I didn’t know any blind or visually impaired people and the ONCE blind association here in Spain could not help me as I was not Spanish (their words).

So I got pretty depressed, pretty frustrated and quite bitter about it all. I wasn’t blind so I could do other professions that didn’t involve computers but that left me with a very small number of choices. I passionately wanted to keep doing a job that utilized my mind. But when you think about it pretty much every job out there requires a computer, or doing some reading and writing of some sort. The idea of leaving software development was too much to bare so I worked and worked on my skills and slowly but surely I got better at it. Improvement would often come in bursts as I learned a new feature of Jaws, or a new keyboard shortcut. Slowly over the months the frustration and feeling of helplessness reduced but I was always alone with it all. I had no one who understood my struggles and frustrations, no one to pick me up when I had a particularly difficult day. I really did go through a lot of anguish and stress and I am relieved that period is now behind me.

Probably the biggest impact on my new life with this impairment was as a result of putting a post on a web forum asking to talk to other people who work. I had the idea after reading an article about the little publicized struggle that people who go blind, mid-career, go through. It talked about people struggling to keep their jobs and trying to keep their employers from finding out the secret that may be they just aren’t able to do the job anymore. Add that these people usually have dependents, mortgages, kids and it all adds up to a lot of hidden anguish and stress. I read that and I knew it was talking about me.

I have a mortgage, I have two wonderful toddlers and I am the sole breadwinner. I almost felt like crying. It basically said that I wasn’t going through all this alone but that there were other people out there going through exactly the same thing. Suddenly I had to find some of them, or anyone who works for that matter. I don’t know why but I had never seriously considered trying to find someone else visually impaired, that works with computers , that I could talk to and learn from. But know I had a burning desire for it and within a few days I met a blind software developer and I was sharing my story, my struggles and my questions with this person and I have never felt better. I am no better at using Jaws and using my development tools than I was before, but I don’t feel alone anymore. Nothing seems as scary and uncertain now. It is still early days of knowing this person, this mentor, but I am much more hopeful for my future now that I have someone else to lean on that knows exactly what it takes to succeed in the software industry. So I still have the pressure that I am the sole breadwinner, and I still struggle at work but I am not so worried now.

Find a mentor, find two, who work in your profession or work in the profession that you are thinking of entering. Don’t go it alone, there is just no need. No problem will be insurmountable if you have a friend who understands and who has the experience to back up any advice they give you. If I had to choose anything I wish I had done in my first year but didn’t, and there are a lot of them, then it is finding an experienced mentor to help guide me.

To Braille or not to Braille

So this is a no brainer. I should learn Braille. I am two years in and have only learned the alphabet. You should try programming with audio, it gets interesting. There’s always another specialist to see, always another promising line of investigation that makes me think that this condition, whatever it is, is only temporary. So I put it off and I put off asking for my company to buy me a refreshable Braille display.

If I lived in the UK I could probably get help from the Government with that I suppose. But I live in Spain now and while ONCE is a superb organization by all accounts, you only get help if you are Spanish. Seriously, I live and work here but because I wasn’t born here I cannot get their services. I find that position ironic given that they fight discrimination of the blind every day. So I know I’ve got to do it and I need to make time for it. Just gotta do it now.

Gonna speak to work about it in the morning.

Hola Internet

I am a software developer, known to build the occasional website, and I was absolutely in the developer camp where the word accessibility was never spoken. Not out of malice or refusal to put that extra effort in but pretty much down to pure ignorance. I find that ironic now that I am visually impaired and have started to use a screenreader to surf the web and continue to program. Poetic justice may be?

Well I have definitely learned the lesson and I feel suitably ashamed of my former attitude to the significant minority of people who are disabled in some way.

This is my blog. It’s not about web accessibility, I think that the community has that covered. This is just about me, my struggles to come to terms with my recent vision problems and my planned path forwards. I have been using my screenreader for almost two years now and I don’t think I’ve really gone about getting the necessary skills in the right way. I think if I share how I’ve gone about things, and how I am starting to really move forwards now in the right direction, then I might help someone out there. Especially someone who encounters vision loss as an adult, mid-career. That subject needs some heroes and while I am not one of them I hope this blog can put me in touch with some and I can help share their knowledge with all you out there.

That’s it for post numero uno. Talk soon.