A unicorn no more

The last time I was sick put me in a bit of a tailspin. I managed to get through it without a hospital visit but when I went to a friend's house, because I was feeling low about being sick again, I ended up feeling worse. I felt worse because my friend felt the thing she should do was offer medical advice; things I should try because it had helped her in the past.

It was infuriating.

In my life people have told me things I should do to prevent myself from getting sick. As if I had not thought of those things in the 40 plus years I have lived with this chronic condition. They have offered teas, medications, loads of advice and sometimes blame-- as if I could control the sickness that upends my life.

Move around more one nurse told me the day after I was admitted with yet another bowel obstruction. I informed her that I had ran eight miles that morning before being hit with an obstruction in the afternoon.

Eat more fibre says someone else. Experience has taught me that raw fruits and vegetables send me to hospital as reliably as getting hit by a bus.

These are the things people and health professionals have typically told me all my life. They have told me these things because they have never met another person who has the chronic health problem that I am living with, have always lived with since birth. Neither have I until this summer.

After deciding that getting sick was becoming harder to take mentally after each round of obstructions I finally decided to seek help for the mental trauma that is caused by living with a time bomb in my own body. But talking to a mental health professional, while good, just isn't the same as talking to someone who knows what it is like to think of food as an enemy, to think of your body as a traitor, to know that at any moment everything your life will have to be put on hold. Arrangements will have to be made for your children's care, your job will have to be covered (meaning less money in your pocket), all plans must be shelved.

And you never know how long it's going to last; days, weeks, months...your life falls out from under your feet and all the while you know that somehow you are going to have to put it all back together again when you finally get better.

Everything stops and there is nothing you can do about it.

But the internet has finally given me answers and a community. This summer I found a group of omphalocele survivors, people who live with the same birth defect I have (a rare abdominal wall defect in which the intestines, liver, and occasionally other organs remain outside of the abdomen in a sac because of a defect in the development of the muscles of the abdominal wall). Not all of them experience obstructions like I do but we all have had health issues and worried about our ability to have children of our own (female survivors) due to complications from our condition.

Suddenly I was no longer a unicorn.

It is impossible to express how much this has changed my life – to know that somewhere out there people will understand what is happening to me, what I have lived with and continue to struggle against.

The understanding is just the beginning. There are also helpful suggestions from adult survivors- there are not that many-- on how to deal with obstructions and a dietary regiment that will help reduce obstructions. Contrary to what I had been told by the medical community all my life, what I need is a low-fibre diet, not a high fibre diet.

I followed this low-fibre diet advice while travelling this summer and felt so much better.

It may be hard for the healthy or the diagnosed to know what it is like to live with a serious health problem that is not understood and rarely known. I have explained my condition to health care providers, family and friends all my life; no one has ever not needed me to explain what was wrong with me. No one has ever said, “Oh yes, I know what that is.”

To finally find your community, to find people who can actually help; it's revolutionary. The world is different for me now and knowing this group is out there-- even if I never meet them in person-- marks a turning point in my life.

Throughout my life I have never met another O-survivor. I had never met a doctor who upon seeing my scar knew what it was.

But despite that I would consider myself lucky in the doctor department. Where I live now, in my hometown, my docs know my condition and they never hesitate to treat me when I present with an obstruction.

I have moved a lot in my life and had new doctors poke, prod and test for many hours before finally agreeing that my problem was a bowel obstruction and finally providing pain medication.

I was luckier than anyone has a right to ask for when I found a great abdominal surgeon in Bangkok – where I lived for almost a decade-- with my first hospital visit in the city to an obscure hospital not frequented by foreign nationals. It was the closest hospital to my apartment and just happened to be where Ajarn Suthep, who spoke excellent English and who had done his residency in upper New York state, practiced. He saved me from pain and torment on numerous occasions and saved my life on Christmas Day of 2003 when I presented with a obstruction that was turning gangrenous.

After 40 years this long road seemed to be getting longer. I hated being alone with this internal explosive. Finding this group was a lifeline I desperately needed. I don't comment much on the message board and I often find it difficult to see the children in the group who are now going through such horrible medical ordeals and harder still to see the poor children who don't make it into the O-survivor group; the O-angels.

I've been wanting to write this post for several months but the closer things are to the bone the harder they are to write.

I am so thankful to have found what I needed. I'm a unicorn no more and that in itself makes my life easier.  

Peace in the lab

One of the first things I noticed when I started working in the lab was the lack of noise. No one felt the need to fill in the absence of sound with workday radio, podcasts, or the coffee shop buzz that is available on a livestreaming feed. The silence was only cut by the occasional hum and click of machines. At first I thought I might ask to bring in my much loved public radio broadcaster which is ever-present in my home but after a day of silence, I decided quiet was preferable.

Even on that first day, when I was inputting data into a spread sheet, I noticed the novelty of silence. It is such a rare commodity these days. As I focused on my data sets, they took on meaning and patterns appeared leading me to make observations about the research environment which I had not actually observed first hand. It was a surprise when I realized I could see the stream in my mind's eye through the numbers.

Work in the lab has progressed from data input to actual experiments and collection of data but there is still the silence; and I like it. The lab has become a kind of oasis from both noise and people. This being summer there are no students in the hall and very few people in the building. On my floor, I can easily count on one hand the number of people I see every day...and that is a very different life than the one I inhabit as a reporter where I am constantly in touch with people, it is the job description.

In the lab you get drawn into the small triumphs; when a measurement is a perfectly even number, when a specimen is quickly and easily located, when a dish of samples all turn out to be the same species – these are daily wins that give me a secret thrill.

And then there are the specimens in question. The animals I am working on are small water bugs similar to the relatively well-known caddish fly. They protect themselves by assembling a outer-case of stream debris, typically small grain particles. To the naked eye they look like small pieces of bark but under the microscope they are a mosaic of colours finished with a glistening shellac. The beauty of the world is astonishing and I am thankful that I have this opportunity to witness it. Without the lab, I never would have known about these miracle mosaics.

It is often remarked that experts know nothing in the world other than their speciality. Working in the lab I can see how this occurs. The lab is a bubble that insulates you against everything that happens outside of the lab. You become fascinated by everything in the lab to the point where there is no room for anything else. Once you open the pandora's box of scientific investigation it leads from the inaugural question to hundreds more, perhaps creating a lifetime of work on one seemly obscure insect, plant, or cellular function. Science is a rabbit hole that many plunge into like a high diver, moving deeper and deeper into the depths of the burrow. It is a comfortable place to be especially when the rest of the world is in turmoil.

The other morning I woke to reports of a shooting in Dallas, Texas. Five policemen were dead and others were wounded. I was happy to escape into the lab away from the non-stop coverage of the event. I am not saying one should ignore the news and pretend the world doesn't exist but I do think it is beneficial to turn it off. One news report a day will likely keep you abreast of all the major world events; remember when news was something we sat down to watch for half an hour an evening. We did not seem to be any less informed but I do think we were less traumatized.

The lab is good; a silent mediation focused on small insects. I enjoy their microscopically visible eyes, I occassionally talk to the specimens especially if they are easily found and measured and I appreciate the discipline of concentrating on one thing, with no outside distractions, for several hours a day. The lab is a doorway to another world where I unplug from one dimension and inhabit another. It is a good place to be.

Reality check

Photo by Linda Gerrior

Graduation is always a time of excitement and expectation. The future is laid out before the grads full of possibilities. It is a time of change, of evolution, of movement into adulthood and the real world that many graduates have been clamouring to see and experience.

I always feel the rush of excitement every graduation season. It gives me a thrill to think of all these graduates will do in the coming years. But this year is a little different, a little like a wake up call.

I know many of the graduates this year and the thing is, I first knew them when they were aged nine or 10, the same age as my kids now. And somehow these kids are graduating. How did that time from elementary school to graduation go so fast?

This graduating class leaves me feeling a little scared as it has become clear that in a blink of an eye it will be my own children walking across that stage and then we will all begin a new stage in life; a stage where my favourite people will no longer be living in my house. That's the thing about being a parent, you raise your kids to be the sort of people you want to be around, and then they leave.

It's a day of mixed emotions for parents and this is the first year that I caught that sensation as well as the excitement. It will be my turn to cry soon enough.

Congratulations to all the graduates. Here's a toast to the parents for bringing them up and letting them go.

A man walks into a coffee shop...

This weekend my family spent a few days in the city which is something that only happens once or twice a year. One of the city's features that my children comment on during these urban interludes are the beggars on the street. We don't have street people where we live and my children react cautiously when someone asks for money as we stroll along the sidewalk.

On Sunday afternoon we went for lunch at a waterfront fast food restaurant. We had gotten our food and were tucking in to some sandwiches after a tour of the provincial art gallery when a ruckus erupted at the service counter behind us.

I did not see what happened but I heard a man, who would likely be pigeonholed into the category of street person, raise his voice in complaint. He said the server had thrown the change across the counter at him. She claimed that she dropped it by mistake-- I don't know what happened and it soon became irrelevant. Rather than apologize for the accident, the staff got into a heated argument with the man with one staff member eventually yelling, “Get the fuck out of my store. I am calling the police.”

The fire was lit and the man continued to loudly accuse the staff of showing him no respect. Another staff member, with a cooler head, asked the man to leave and added that there were children in the restaurant (mine) and that the man was scaring them. The man pointed out that he was not the one swearing, true; but he was yelling and my kids were definitely nervous. Despite the calm and rational voice of this particular staff member, the fire once lit took a while to burn out.

After a few minutes the man finally left and the staff regrouped behind the counter. The manager, the one who had swore at the man, came back out from what one assumes was the office and was heard saying, “I don't have time for this.” Then business resumed as usual with the manager apologizing to the remaining customers for the incident-- but not apologizing for his own hostile behaviour which exacerbated the situation.

Everyone was incredulous at the man's outburst. They sided with and supported the staff. There was not a single comment heard which considered the man's perspective.

When we left the restaurant I asked my kids what they thought about it all. They had been scared by the confrontation and they repeated the types of sentiments echoed by all the customers after the man's departure.

So I asked them, “What about the man? How do you think he felt? Imagine that every place you went people didn't want to look at you. That when you bought something in a store the clerk threw the change at you because they didn't want to touch you. Imagine that every day is like that. Imagine there is no place that you can go that people will treat you with respect. That is what that man is living. And when you live that way, every little incident piles up and weighs you down so that what seems like a little thing to us onlookers becomes a huge, intolerable offence.”

They began to consider what I was saying but I don't know if they would think of such an incident differently in the future; if they would try to see the outsiders point of view.

These incidences, the so called microaggressions that have often been cited in terms of race relations in North America, are a daily reality for many people. The million slights and put downs foment frustration and incredulity that the world can treat people this way and not recognize the harm done.

I read about an example of microagression recently on facebook; an incident at a local store where a woman of colour casually mentioned to the clerk that she was just getting off work and that she taught at a nearby school. The clerk's next comment was to ask the woman if she was a Teacher's Assistant to which the woman replied that she was a teacher which elicited a 'Wow' from the clerk.

People constantly face this everyday devaluing of their worth and questioning of their position in the world. The teacher in her post was quick to point out that being a TA is an admirable profession but the assumption that a woman of colour could not be a teacher, which was clearly subconsciously (or consciously) what the clerk thought, was a hard wall to run into at the end of the day.

I am a white woman and have never experience racism directed at me but I have felt the sting and judgement of others for being poor, for being from a 'broken home', and occassionally for being female. And I have seen countless examples of people being disrespectful to those among us whose lives hover on the edges of society rather than nestled against her soft, exceedingly white, bosom.

When I was a teenager one of my first real jobs was at a fast food restaurant in Edmonton. Edmonton is a cold place. It's not for the faint hearted or the unhoused.

There was a man who came to my restaurant every evening. He ordered coffee; nothing else. He sometimes asked for the advertised free refill. He wore big headphones back in the day when that was not cool. The headphone wires hung freely from his coat searching for a nonexistent walkman.

This man was homeless, or at the very least housing challenged. Headphone man was not exactly clean. He kept to himself and he didn't talk much.

After a few shifts of observing his behaviour I started buying him lunch and then sitting with him to eat during my break. I don't remember talking to him about anything although I am sure we did. I don't even remember his name although I must have known it at the time. I remember his beard, his headphones, his quiet.

My lunch dates with headphone man lasted for a couple of months but then the hammer came down. I was instructed by my manager not to give headphone man food. I explained that I had paid for it, I was not giving him my free lunch which was part of the benefits offered to workers at this particular establishment. That made no difference. The manager was clear, they did not want headphone man in the store. He wasn't good for business.

I told headphone man I could not eat with him anymore or I'd lose my job and he stopped coming. Shortly after that I quit my job, not directly because of the headphone man incident but in some ways it was related. I looked forward to lunch with headphone man. He made me feel like I mattered because he mattered to me. Without him there was very little to look forward to at work.

What's more he was an outsider. He wasn't part of the machine. He was not one of the worker drones that thought the company was the most important thing in the world. There would be no fascination with company training videos which instilled a cult like following in employees for headphone man. He'd utilize the machine but would never become part of it.

Headphone man wanted a warm place to sit and drink coffee. A small request of the universe, of civilization. His money was the same as every other patron yet he could not be tolerated.

People are jerks. They are convinced of the correctness of their actions especially when they have society praising their discriminatory behaviour. People want to be treated like people, not like rabid dogs whose food must be thrown from a distance to avoid contamination. When you treat others like they are uncivilized animals, it is best to stop and reflect on who the actual beast may be.

I missed an opportunity this weekend to say something to all those people in the restaurant who were upholding the status quo. I have to admit that I did not want to get involved; my kids were with me and I was not sure where the confrontation would go—I couldn’t risk my or my children's safety. The best I could do was make the incident a talking point, a means to discuss different points of view of the same incident; a chance to shape my children into the people I want them to be.

June 13/ 2016

Kids these days, oy vey

It has been in the news provincially in recent weeks that kids these days, well, they're useless. They don't do their homework, they are only interested in texting their friends and they have no work ethic. Many people may take these charges as truth having no contact with today's youth. Some may have formed this opinion because they have had contact with kids today and it wasn't a good experience. When it comes to kids today I have a unique perspective; I employ, teach and study with them. Given this portfolio of experience, I know a thing or two about kids today.

Work ethic, they have none. A small business owner recently went on the record to state that her business was forced to close because she could not get good workers. The kids she hired were always on their phones and didn't perform their prescribed duties. That is a pretty outrageous charge to lay at the feet of your employees. What about the employer? It seems like she may not have created the best work environment as she's scapegoated her employees when everyone knows—It's the economy stupid. Surely there may have been some inappropriate use of time; who among us can honestly say they don't check their personal facebook or e-mail when they are on the company clock? The sad thing is that no employers go on the record singing the praises of their employees, so I will.

A few years ago I was in a management position and had two university students working under me. They were great at their jobs. They got great reviews from the public they served. And they stayed on task even when some of those tasks were mind numbingly boring. In fact, I sometimes had to escape from my office and my own duties on dull days. I would break into their work day to have a little chat and some social time. I can't recall them doing the same thing. They were outstanding, dedicated workers who took their jobs seriously.

When it comes to work ethic, I have only seen a serious failure to develop one in co-workers who were senior in age to myself. Some people won't take a job because they think the pay is too low. They choose not to work at all. Kids today want money, they're working. Take a look at who is working the cash when you buy groceries on the weekend or during the evening shift. In our local grocery store it is almost all high school students at work during the weekend.

Some people take a job and then fail to work because they think they aren't being paid enough. This was what I witnessed; a coworker did nothing for an entire contract. That worker wasn't a youth but someone several years my senior. The younger workers on the same contract all managed to fulfill their contractual obligations.

I see high school students whose schedules are overloaded with sports, part-time employment, school work and occasionally some fun with friends. I am amazed by the things these kids get done and feel that my own teenage years were completely wasted. Kids these days have a three page resume of volunteer and paid work by the time they leave high school. My generation never moved so constructively in the world, never accomplished as much as kids today.

This week I attended a very long meeting where one presenter talked for over two hours; citing reports and posting graphs in power point. The people in the crowd were very attentive, the presentation was about a process that would see the local school close. In the front row were six teenage girls. They had gone to this school and would be moving on to a new school in the coming year for high school. The decision made about the fate of their current school would not affect them personally. But they too were attentive, didn't fidget (as I occassionally did) and weren't playing on their smart phones. This is not remarkable. It is only remarkable to people who discount the thoughtfulness of kids today and their concern for community.

I also act as a host mom to international students. These kids come to a new country, a new language, a new school and do well. They often get top marks. Kids today, how many adults could make this leap?

Yes, there are some problems with kids today but I think many of them are problems we, the generations that came before the millennials, have created. Our lowered expectations, reflected in grade inflation in university and no fail policies in public education, is creating this false idea that kids these days are spoiled, entitled brats.

Every generation bemoans the one that follows. Can we ever accomplish more than our forefathers? Of course we can. Kids today are doing amazing things. Occassionally we'll see these amazing things reported in the media but not often enough. However, not every young person is making incredible breakthroughs with their science fair project, not every young person is going to accomplish something that will bring them into the public eye. To expect them to do that is setting the bar pretty high. We need to acknowledge that kids today, the ones that aren't making it into the newspaper, are doing good things every day, working hard and contributing to society.

If children are our future...I think it looks pretty bright. From the baby boomers on down, we've done a pretty good job of screwing things up, I am confident that the youth of today will help save us. We're in good hands. Let's get out of their way and let them have at it. Top photo: The Millennials and me -- at work.