By now we are four months into the lockdown that started in March & it looks like life as we knew it has changed forever. Of course, after September 11 life changed monumentally as well but because we have 19 years distance between that event and life today, most of the changes seem normal now. Life does change, sometimes slowly and sometimes drastically but not all of those changes are for the worse. While we are still managing the fallout from recent events, some people are saying that they appreciate things like being able to work from home, not rushing from activity-to-activity all the time, and spending more time together as a family (although, some people feel the opposite is true).
One of my favourite pandemic activities has been getting together once-a-week with friends to play Trivial Pursuit. Now, I am a HUGE trivia buff but I have terrible recall. My friends on the other hand are trivia masters & one of them has even been on Jeopardy. So while my chances of winning are low, that’s not the point. The point is that I get to virtually see my friends – in three different time zones & two different countries – and we get to laugh & joke and play games. For a very small window of time I get to connect with my friends & it feels almost normal.
We all know that online meetings lack the intimacy of in-person connection but it’s better than no connection at all. I’ve gone from seeing all of them in the past year to probably not seeing them at all for at least a year. That is the problem when some of your closest friends live far away. But we are no strangers to distance: our connection was brought together because of the internet and so we are used to most of our communication being digital. So our weekly TP game is just in addition to our interaction both online and via group chats.
Honestly though, our weekly game is one of my favourite nights of the week. It can be chaotic with dogs, kids, and people eating dinner (that pesky time zone issue) but for me, it’s become one of the best things to have come out of this pandemic. I really hope that when things get normalized and when we can do other things with our evenings that we really make the effort to continue our game night on some scale. It’s really nice to connect with your friends even if it is only virtually.
I’m sick and tired of our generation being called the TV generation. What do you expect? We watched Lee Harvey Oswald get his brains blown out all over. How could we change the channel after that? – Dennis Leary
When Andrew Scheer criticized the government’s handling of the pandemic it was, of course, easy for him. He had the luxury of waiting for the fallout of the programs the Liberals were forced to roll out quickly and he could wait until he could his two cents. Once the smoke cleared and the gaping holes in the programs designed to support Canadians appeared, it was easy to point them out. To be honest, that’s also his role as Leader of the Opposition: to play the flipside of the coin, critique decisions made, and to suggest other things to help the country to get back on its feet.
This is not to blame any party: had the Conservatives been in power, the opposite would also be true. We often forget that the Opposition’s job is to basically OPPOSE the government’s decisions. In fact, everyone was doing their jobs in the roles they had been given.
By the beginning of June with the lockdown in full swing, the hybrid schooling my kids were doing was draining me of all the energy I had. Of course, the older laptop they shared died a spectacular death in April, which meant both of the personal laptops the adults owned were recommissioned to tackle the insufferable, non-intuitive Google Classroom GUI and multiple meetings the teachers had set up. On top of that was a plethora of Zoom meetings for their extracurricular activities & friend hangouts. Sprout – the youngest – needed particular attention to keep her focused, often up to 6 hours a day. I basically just gave up on interacting online with my friends via Social Media and instead turned to binge watching pablum tv when I wasn’t helping the kids. I kissed my online relationships goodbye temporarily (I don’t keep facebook on my phone) and moved most of my interpersonal connections to text or Signal group chats.
Of course, I realized the less I engaged the more desperate the algorithm became as it tried to keep me on the platform. I usually went on facebook once or twice a day just to check my community groups (one because I admin it, one because it’s the neighbourhood group). The odd time I would scroll through my friendslist but it only took a few posts before a post I had already seen previously would come up – a trick I use to signal myself to close the browser. In the past it would take me multiple posts to get to that point but now when the algorithm didn’t know how to parse the minimal information I gave it, it just threw everything it had at me trying to keep me engaged. The more it tried the more I realized how little it had to offer me so as long as I didn’t post and/or comment, the less reason I had to go back to the platform more than once a day.
The second thing I noticed was more of a revelation than anything else (which I discussed in my previous post): so many things are going on in the world that Social amplifies it all, all the time. There is no shortage of horrors occurring daily and we can read all about it. In the past, the news cycle curated what we would see and the weight would be put on local, regional, and national stories: only the biggest of the international stories would be fed to us through the funnel of news curation. Of course, we can also argue that this slanted our view of the world depending on the news outlet and that the internet leveled the playing field where we can now read about ANYTHING, ANYWHERE. But conversely, the algorithms on Social Media (and also to some extent on news websites) continue this funneling of information based upon what kind of content either they want us to see, or what content we’ve indicated we engage with the most. In essence, the problem isn’t solved, it has just become bigger. Gone is the small-to-large focus on local->regional->national-international news and in comes bad news from all over the world. Enragement is engagement and we are more likely to share the most enraging things we come across perpetuating the cycle.
A good example of this is something horrific like a child abduction. We know that child abductions by strangers are really rare and locally they happen quite infrequently. But with Social we now hear more about these incidents a lot more often and from all over the world. The reason for this is because people are more likely to be horrified by – and therefore share posts of – harm coming to children. So if an abduction happens half way around the world it realistically does not indicate that these crimes are going up but by just reading about it our feeling of safety and security goes down. Realistically nothing has changed at all but we feel like it has.
I realized that this effect was also driving helplessness in people and that sharing posts on Social made them feel that they had some power and control when in fact they do not – all they are doing is continuing the cycle of hopelessness. This came to the forefront recently when a friend asked on Facebook that people in the US take him off their political posts. As he – rightly – pointed out: he has no control as to what happens in the US. He doesn’t live there, pay taxes there, or vote there. The multitude of horrors being fed to him daily wasn’t doing anything but make him anxious over something he had zero control over. This struck me because it was so obvious that aside from the larger issues plaguing the world, more current event knowledge IS NOT power: it’s a reduction in power, and an increase in helplessness. That helplessness spills over into every aspect of our lives, too. The fact that the horrors are never-ending given a wide enough world, we stay on Social Media because some new fresh horror will be along to replace the last one at any minute.
This is, naturally, not an argument for ignorance nor is it a call for us to ostrich ourselves in a blanket of ignorance. It’s a recognition that staying informed about issues should follow that small-to-large sphere of influence: keep informed about local issues primarily, and international issues lastly. I do need to know what is happening in the world, I just don’t need to know every horrible minute detail about it.
Thirdly, what I have found from going back to Social only periodically is that everyone thinks they are the Leader of the Opposition when it comes to important issues: you can position yourself to look good just by pointing out the obvious holes. This all comes down to the nature of Social being performative (to be fair, all of social interaction is somewhat performative). @awardsforgoodboys on Instagram has a great write up about this (although it works for people no matter their politics) that covers how I feel about most posts when I scroll through them today: the poignant & funny meme, the hot take on the poignant and funny meme, the rebuttal to the hot take on the poignant and funny meme ad infinitum. It all feels like it’s a part of a great opinion hamster wheel where people are jockeying for position with every post about who is the most enlightened on the issue du jour.
My question has recently become, “so what is the desired outcome here?” I think a lot about this in the context of awareness campaigns and their place in the Social Media landscape. If you’ve been on Social for any length of time you have encountered these “awareness” posts either by DM or by cut-and-paste post requests: post the colour of your bra! A cancer patient’s only wish..! But realistically we all know that cancer is bad and what does this sort of campaign do except for shaming people (“I bet that most of you don’t care enough to repost this!”)? These posts make us feel warm and fuzzy when we share them because it feels like we’ve done something but in reality, we haven’t. In the end, it doesn’t translate into more donations or research, it’s a feel-good action that goes nowhere. Many Social Media posts have become like this: how does sharing this make me look to other people?
So I’ve started to ask myself that question to the larger issue of Social posting: what is the desired outcome here? Does posting this change the world in any way? Is arguing the finer points of issues actually educating and changing things, or is it performative? Am I looking to educate or am I looking be MORE right on the issue by shaming people who haven’t reached “my” degree of enlightenment? Does all this virtue-signaling/shaming/arguing actually change anything? Am I just looking for back pats? Could my time and energy be better spent volunteering, learning, donating money and supporting people who are on the ground instead of fighting with someone’s racist Uncle Bob? Maybe that energy could be better spent in my own community?
That’s what makes the job of the LotO in a majority government so appealing: you can be right just by the very nature of pointing out the flaws in the other person or plan & the people who agree with you, you already know will agree with you. You have the luxury of performance, the luxury of not having to make the hard decisions on the fly, the luxury of not being held responsible if things go wrong. But what you don’t actually get to do is really change anything. It’s a performative role, one that makes you look good but one where there is little-to-no risk. Posting on Social media without action is very much like that: you can scream into your megaphone to your chosen audience and you can all sit around and pat each other’s backs all day long about how right you are when it comes to certain issues. Critiquing is easy, action is hard. But at the end of the day: it’s all shit for flowers without actually DOING something outside of screaming into the algorithm. The question we need to ask ourselves is: if I really care about change/this issue what can I do right now to support it in real terms with real outcomes? I guarantee you that one more Social Media share isn’t the answer.
I have been getting up & heading outside with magazines, books & my journal and then staying there all day. I help the kids with their school until sometimes 2pm but then I swim, I read, I relax.
I’ve not been on Facebook at all. I went on and tried to get through some of it but then I saw the comment about triple funding the police so I peaced out. I wanted to jump in so badly to respond to that idiocy but honestly, why? I scrolled down and saw other conversations I wanted to contribute to and then I realized that this is the exact pattern I want to break: getting chained down to Facebook all day waiting for my turn in the back-and-forth of the argument. For what? I don’t GAF about these people, I won’t remember this convo in a year, rarely are minds changed, and in the end I’ll keep losing hours of my life to bullshit people (many of whom I don’t even know?).
I do enjoy in-person discussions. But what I think we’ve collectively failed to realize is that Facebook isn’t the same at all. It’s not similar to hanging out and have a few beers with friends & engaging in a lively discussion. You have nuance in-person, you have empathy, you have an ability to explain quickly and it all happens in real time. You don’t have convos that stretch out for days because someone disappears to go work, or what have you. Random people don’t barge into your circle and start screaming at everyone. You can say, “well, great talk but I’m calling it a night,” and everyone just leaves. No one continues screaming into the ether.
Will this sojourn last? Maybe, I don’t know. But right now it’s been great for my soul. I feel calmer and more productive than I’ve ever felt. Since retiring I’ve tried to look at ways to stave off technology’s grasp on my life and basically it comes down to, “don’t post, don’t comment.” It’s interesting to watch the algorithm struggle to try and keep me on the platform by just upping the notifications from communities and from where friends have commented on the posts of our mutual friends. But that doesn’t have the pull of a comment on a post or a reply to one of your comments.
I think in the end the balance just tipped for me and SM has become less enjoyable. Too much horrible news from the US (I can’t do anything about), too much news from random places that really don’t concern me but that heighten my anxiety, and too much performative nastiness that serves to shame, not educate.
I have four good hours of energy my brain allows me a day. I can spend it arguing with someone’s racist uncle Bob or I can read, draw, swim with my family and enjoy group chats with friends on Signal. The choice is obvious.
This is an email I started sending around to friends when I gave them some of my sourdough starter. I’ve had my starter for over two years now and we’ve been enjoying baking it regularly. I am thrilled to see people get more into old-timey crafts these days and I am always happy to share starter or answer questions
Welcome to sourdough baking! It seems like a lengthy email but I have put in a bit of troubleshooting and tips I’ve learned along the way in the email. Sourdough is often seen as super complicated but honestly, it doesn’t have to be! If you feed the beast once a week and keep it in the fridge it’s a super simple way to bake. Honestly, the best way to actually learn sourdough is to just do it. I know it seems daunting but at the very core, it’s just flour/water/salt once you get into the habit of knowing your starter (which is just something you pick up over time) it will take you 5 minutes a week to keep the beast alive.
Keeping the beast alive – tips and tricks:
Now that you have the starter, keep it in a glass or plastic container and keep it in the fridge. I use a 1L mason jar and put a plastic bag over it because I don’t want to explode a container with the gasses. By keeping your starter in the fridge you only have to feed it once a week & even then you can stretch that out. To feed it, eyeball the amount in your jar and add 1/2 water and 1/2 flour to the starter. So, for example, if you feel that it looks like there is 1 cup of starter in your jar, to feed it you just add 1/2 c flour and 1/2 c water (filtered or distilled is best. You can make distilled water by just leaving a bowl of water out overnight so the chlorine evaporates). Mix it up, stick it back in the fridge and let it sit for another week.
During the sitting period your starter will get a watery, greyish top on it. It should smell a bit boozy and a bit vinegary. That is the hooch and it doesn’t mean your starter is bad. Just mix the hooch back in before feeding your starter. If it smells mouldy, then it’s bad. If you aren’t sure, just feed it and let it sit on the counter for awhile. If it makes sweet smelling bubbles, your starter is fine.
If you haven’t baked in awhile but you’ve been feeding your starter, you may see your container getting too full. To manage this, you will want to mix in the hooch and then ditch a bunch of it before feeding it. That way you won’t overflow your jar and your starter will stay healthy. I usually will pour half into the compost bin. I keep my starter pretty full because we often will bake up to four loaves at a time, you obviously may want to make less.
If you are like me and have forgotten to feed your starter, oh, say, for almost two weeks by accident you will need to feed it a couple of days in a row before using it. I usually mix in the hooch, feed it, and then stick it in the fridge overnight & then repeat the next day (ditching half of the starter if your container is too full). By the third morning I feed it again, let it sit for 4 hours & then make my bread. You can sometimes get away with only two days of feeding but expect your loaves to be a little flatter (but still delish!). I can actually spread this out over a week as well if I realize I haven’t fed it in awhile. If I want to bake Saturday but realize on Monday I haven’t fed it in awhile, I will feed it, say, Monday/Wednesday/Saturday morning.
Often you will see recipes that say that on the day you want to bake that you should feed your starter and let it sit for four hours before starting your recipe. Since I am lazy AF, I usually feed the starter the night before I want to bake, stick it in the fridge & then the next morning take it out and let it warm up to room temperature (app 1 hour) before starting my recipe. I hate waiting so it’s nice to wake up, pour a coffee, take the starter out of the fridge and by the time I have finished two coffees, I am ready to start my bread before the day gets crazy.
(I also do an 100% whole wheat using this same recipe)
I have always had success with this recipe from Patrick Ryan. I’ve added baking instructions below but if you need to create starter, click through and this link has all the info you need from start to finish.
I have made the approximate measures in cups/tsps but obviously it’s not as good as baking with a scale. Sourdough can be a bit more finicky based on the starter but I find the weights a bit more forgiving so it should work.
(Makes 2 loaves. Halve the amounts for a single loaf)
• 800g strong white flour (6 3/8 cups app)
• 10g salt (2 tsp)
• 460ml water
• 320g sourdough starter (1 1/4 cups)
• Add the flour to a clean mixing bowl. Mix the salt through the flour. Add the water and sourdough starter to the flour. Combine all the ingredients together to form a rough dough.
• Turn the dough out on to a clean surface and knead for approximately 10 minutes or until the windowpane effect has been achieved. The dough should be smooth, soft and elastic.
• When kneading, do not worry if the dough is slightly wet or sticky. Resist the temptation to add any extra flour. (important!)
• Return the dough to the mixing bowl, cover with a towel and allow the dough to prove for 4 hours at room temperature.
• After 4 hours turn the dough onto a clean work surface and knock the dough back. Knocking back the dough simple involves knocking the air from the dough which helps to equalise the temperature within the dough.
• Form the dough into a tight round ball.
To prove & bake using a proving basket (aka banneton):
• Prepare a proving basket by lightly dusting with flour. Place the dough, seamed side facing up, into the proving basket. Loosely cover the proving basket with a clean tea towel and leave to prove for another 3 – 3½ hours.
• Alternatively, to prove overnight for baking first thing in the morning, place into a fridge and leave overnight.
• Using a fridge reduces the temperature of the dough allowing it to prove slower and longer which allows for a greater development of flavour within the dough but also increasing its digestibility. As dough ferments or proves the gluten within the dough breaks down. The longer a dough is allowed to prove the more flavour it will contain and the easier it is for your body to digest. (this is my favourite way to prove the dough. I sometimes won’t start my loaves until late in the day, which allows me to finish my dough right before bed. I just stick them in the fridge overnight and let them warm up to room temperature – app 1 hour – before baking. If you need to quicken the pace, you can stick your loaves in the oven with a bowl of boiling water for 20 mins/1/2 hour and then taking them out before preheating your oven).
• To bake, preheat your oven to 230°C / 210°C fan assisted (445°F / Gas 8). Place a shallow baking tray into the bottom of the oven to preheat with the oven.
• Carefully turn your dough out from the proving basket onto a baking tray dusted with flour (the domed side with the indentations from the proving basket should now be facing up and the seamed side on the baking tray).
• Using a sharp knife cut the surface of the dough, this is what is known as the baker’s signature (I use sharp scissors, it’s not perfect but it works). The dough can be cut up to ½ cm deep. (This isn’t just for aesthetics, scoring the bread also helps control where and how it rises while baking). if your dough seems particularly flat/not as spongy, don’t cut it. That will give it a bigger rise.
• Boil a kettle of water then pour the boiled water into the dish that was preheated in the bottom of the oven, this will create steam in the oven while baking.
• Place the baking tray with the sourdough into the oven and bake for 30 to 35 minutes or until a good crust has formed and the loaf sounds hollow when tapped on the base.
Alternatively, if you do not have a proving basket, you can use a large glass casserole dish to prove and bake your sourdough. I also will often cover my boules with metal bowls and bake them for 25-30 mins and then take off the bowls and bake until the crust browns (10 mins). This traps the steam in and encourages the boules to rise a lot higher than they would otherwise.
To prove & bake using a Pyrex dish (this also works spectacularly with enamel cast iron):
• Line a 2.5l round Pyrex dish with a clean tea towel and dust with flour. Place the formed ball of dough into the Pyrex dish lined with the floured tea towel then place the lid (the inside of the lid lightly greased and floured) on the Pyrex dish. Leave to prove for another 3 – 3½ hours.
• Alternatively, to prove overnight for baking first thing in the morning, place into a fridge and leave overnight.
• The reason for using a Pyrex dish is that it acts like a proving basket. The dish acts as a support to your dough. It encourages the dough the take on the shape of the dish and to prove up and not just to spread out flat. The dough will also be baked in the Pyrex dish.
• Using a fridge reduces the temperature of the dough allowing it to prove slower and longer which allows for a greater development of flavour within the dough but also increasing its digestibility. As dough ferments or proves the gluten within the dough breaks down. The longer a dough is allowed to prove the more flavour it will contain and the easier it is for your body to digest.
• To bake, preheat your oven to 230°C / 210°C fan assisted (445°F / Gas 8).
• Flip the Pyrex dish over so the bowl of the Pyrex dish now becomes the lid. Carefully remove the tea towel.
• Using a sharp knife cut the surface of the dough, this is what is known as the baker’s signature. The dough can be cut up to ½ cm deep. (This isn’t just for aesthetics, scoring the bread also helps control where and how it rises while baking)
• Cover the dough with the bowl of the Pyrex dish and place the Pyrex dish into the preheated oven.
• By baking the dough in the Pyrex dish there is no need to steam the oven. Baking with a lid on the Pyrex dish creates its own steam which will allow the dough to rise and open up while baking. The Pyrex is very similar to the old style of Dutch oven baking.
• Bake for 25 minutes then remove the lid from the Pyrex dish and continue to bake, uncovered, for a further 25 minutes until a good crust has formed and the loaf sounds hollow when tapped on the base.
• Once baked remove the bread from the Pyrex dish and allow to cool.
Notes: if you have a breadmaker I find using the dough-only setting makes it easy for the actual mixing/first proving . If you have a stand mixer, that works too for the mixing part.
In the end, just play around with it! Some loaves will be fantastic, some will flop. Add olive oil! Herbs! Cheese! Play around with making cinnamon buns and waffles. The options are really endless and once you’ve got the basics down you won’t lose the skill.
Last year I made the decision to take the kids to Universal for spring break. The Sprout is a huge Harry Potter fan and as they age out of theme parks (and as we hunker down for more savings), I thought it was best to plan a last hurrah of a vacation as a Christmas surprise. Of course, booking during Spring Break was way too expensive and we found we could tack on a weeklong cruise in February for almost the same price as Universal during Spring Break. So of course, we ended up booking in February.
We all know how this story ends. By the time Spring Break came around, the government was telling Canadians to come home as soon as they could and things started to slowly shut down. I had friends who got stuck in foreign countries scrambling to get home and then we all ended up in lockdown.
And here we are now.
Truth be told, nothing really changed for Mr. Tucker and I in terms of our day-to-day life. With winter raging outside I generally am housebound during the winter months. The only thing that changed was that the kids were home. Since the order that schools were closing happened on the eve of March break, all seemed normal to them as we allowed unfettered access to devices as well as played games, read books, and watched Netflix – like much of the world was doing. Come the end of March Break I stuck up a schedule (hope springs eternal), signed them up for Khan Academy and we went forward into quarantine.
Of course, it’s now almost 8 weeks since we’ve been home and so much has changed. We now have masks we ordered from http://Starkers.com. Almost all of our purchases are delivery or curbside pickup, aside from Mr. Tucker’s monthly Costco run for medication and supplies. We go for walks but mostly stay inside, and our social lives (like all of our social lives) have moved to online meetings. Still – and probably hilariously – one of our New Year’s Resolutions was to not eat out at all in 2020 and since Covid-19, that hasn’t even been an option for us.
The thing is, when you have a pre-existing condition or disability your life changes dramatically. When the pandemic started the first thing I knew right from the beginning was: there is no way I will ever be prioritized for a ventilator. Even though disability rights advocates were starting petitions at the callousness of denying disabled people the same rights as able-bodied people, I knew that it didn’t matter. Even if the rules changed, the decisions wouldn’t come from a bureaucrat. Fates would be decided by overworked doctors and nurses facing down the difficult decision of who gets to live and who gets to die. We had already seen this play out in Italy and I knew that it was a real possibility that if things got bad enough here it would happen in much the same way.
So we hunkered down, found all our travel size bottles of sanitizer. Mr. Tucker wiped down every surface after he shopped, and we had a stringent protocol when he came home. Life just changed. Life changed for all of us.
I am grateful that we’re both not working full time right now. Mr. Tucker works for a company that hosts online meeting software and so you can imagine his workload right now. But the kids are home and need some guidance to complete the online work that’s assigned to them. Still, we’ve chilled out a lot more since the beginning. While we still limit access to devices to the weekends, they do their homework, classroom meetings, and Khan Academy online & we don’t restrict access to those things. There are books, art supplies, puzzles, and games for anyone to access at anytime so we’re trying to keep things as calm and laid back as possible.
We’re all exhausted and burnt out about being on top of each other all the time. While Mr. Tucker has his basement office & the girls had their rooms, I felt constantly like I had no where to go. So I found a recliner on a second-hand website which Mr. Tucker picked up for me for a song (whilst respecting social distancing rules), a friend gave me a reading light, and I carved out a corner of our bedroom where I could go and relax when the kids were in the common areas & I needed some peace. So things are working out.
As for us, we are happy spring is here and that this didn’t all begin in the fall, when the dark winter starts to close in. We’ve made sourdough for a couple of years now so I’ve happily become the purveyor of starter & I’ve have sent a long many an email of tips and tricks. We made the decision last year to buy as much of our food as locally as possible, so we’ve been lucky to weather all the hoarding (aside from toilet paper & sanitizer). We have freezers full of local meat, buckets full of flour and oatmeal, we get our eggs from the farmer up the street, and we have a weekly vegetable delivery. We had always talked about doing raised bed gardening so we’ve built beds and are looking forward to gardening with the kids all summer. As well, our pool will be open over the next couple of weeks so we won’t feel as confined to the house. So there are some things to look forward to over the next little while.
Of course, there are a million and one places you can go to hear the worst of the worst news and I am no stranger to the anxiety that comes from deep-diving into that quagmire. But now, I’ve resigned myself to just reading the headlines of major newspapers – informed but not too informed – and keeping busy at home. But I am not going to go into that here, preferring to focus on the positive. I love that so many people are taking up old-timey crafts now that they have the time, space, and boredom to tackle new projects such as baking, knitting, and gardening. I love that neighbours are helping each other with groceries, sourdough starter, and seed sharing. People are starting to see the value in supporting local farms and buying from local businesses that it looks like independent book stores are poised to take over market share from amazon. Even in the worst of times, the best of humanity shines through, and if the research is to believed, this is typical of humans when chaos hits. It may be a little while until things relax again but I’d like to think we’ll keep some of the good bits that came out of all this. One can hope.
On January 15th, 2019 I was sitting on a balcony, on a boat off the coast of Guatemala when it occurred to me that it was a year to the day since my diagnosis. From a cold January morning where my life was turned upside down to the steamy heat & the salty wind of the west coast; a lot had happened in 365 days.
A year previously I had taken a cab from work to meet with my neurologist. Thinking I’d just pop out for an hour or so, I had left all my stuff on my desk, including my lunch. Mr. Tucker – who in the two years of medical drama had never missed one of my medical appointments – had an urgent call he had to take, so he didn’t come with me. Naturally, that would be the day where I received the worst news. After I left the appointment, I did two things: I emailed work and told them I wouldn’t be back that day, and I called Mr. Tucker to come pick me up as soon as he could. I managed to keep the appearance of normal until I got into the car and when I did, I exploded into a heap of hysterical tears. It was really bleak.
For the next month I had appointment after appointment. I had an EMG to rule out lower motor neuron activity (aka ALS) and another MRI to look specifically at my upper motor neurons. I went to the ALS clinic every Monday for about a month to visit with specialist-after-specialist: physiatrist, nurse, occupational health and safety, social worker, speech language pathologist, respiratory tech, physiologist, and dietician. It was a whirlwind of specialists who basically just treated me like I was dying. At one point I said, “Well I am going to do anything in my power to make sure I don’t get worse,” one of the above-mentioned specialists looked me in the eye and said, “Don’t bother, there is nothing you can do.”
I’d like to be able to say that in this part of the story I rallied and was inspired to change & that I did a complete overhaul of my life. The reality is that I vacillated between a staggering array of emotional states and mostly I was just tired, depressed, and miserable. Because I have an aptitude for bureaucracy (worst super power ever, look for my movie, never) and because we had just moved houses and had a multitude of bills to pay, I managed to navigate sickness employment insurance benefits, my private disability benefits, government disability benefits and all the HR requirements at work (with the help of my amazing bosses). This sustained us financially which is amazing considering disability often sinks families into debt.
Over time however, things did get better. I spent a lot of time on my couch reading books about neurological conditions and people who recovered from/plateaued horrible illnesses from cancer to Multiple Sclerosis. I spent days scanning medical articles looking for hope that there were options for my incredibly rare neurological condition. I discussed options with my neurologist and have tried different treatments (research project of one subject – me) and told myself I would try anything that had even a modicum of research behind it. I joined Patients Like Me and various online groups designed to connect people together. After all this, I can say I’ve learned a lot about what it’s like to live with a debilitating neurological condition, and I am still learning more each day. Here are the top things I feel are worth noting:
If you have the choice, take the job with better benefits and good bosses: My management team basically said, “We’ve got it, go home and process it.” They helped me with my paperwork for leave, Employment Insurance, and Disability Insurance. They had my back every step of the way and I will forever be grateful to them for their support. I wish every person who falls ill gets the kind of support I have had but I know it’s not often the reality.
Also, I worked somewhere where I could continue my extended health benefits and where I had disability insurance that covered 70% of my salary until I am 65 (or get better…or die). We know that at any given point that 20% of the population is suffering from a disability. Having disability insurance saved my family at a time where not having an income could have sunk us. Knowing what I know now, I would always choose the job with more supports both in management and in benefits. While I know my disease in particular is rare, becoming disabled (either temporarily or permanently) isn’t as rare as you’d think.
Marry well: It’s such a strange thing to say but I would say that 90% of my being able to cope with this diagnosis I owe to Mr. Tucker. While I always knew Mr. Tucker was perfect, it wasn’t until after joining a number of online groups I realized how horrible some spouses could be. Some people would fall and their partners would leave them there or their husbands/wives would resent them and leave. There were many stories of horrific treatment BUT there were also amazing stories of families who rallied and who were determined to tackle the diagnosis together. Dealing with horrible news is like a magnifying glass: it emphasizes the cracks that were already there.
Have a reason to wake up every day: some people go home after their diagnosis, sit down, and then never get up again. The age of onset for PLS is 50+ so being so young and having two kids who were 8 & 6 at the time I was diagnosed ensured that this was not an option for me. Eventually I hauled my ass off the couch & got back to living.
It’s easy to disconnect – stay connected: when I first got my diagnosis I was reeling and had so many moving parts to manage from medical to financial to social. I didn’t tell anyone except for work & close family until 4 months after my diagnosis because I wanted to make sure I was calm and that I had things organized (disability insurance, medical tests etc.). It was a fairly lonely period in my life because of this. Also, I knew one person in particular wouldn’t support me – and they didn’t. That’s fine. I mentally prepared for their eyerolls and snarky comments and focused on all the other strong supports I had in my life.
Once people knew, I did my best to continue to attend events and continued living my life as best as I could even though I had to modify some parts of it. I have the most amazing dragon boat team, for example, who patiently wait while my two amazing Sherpas Kate & Jay get me in and out of the boat. Because of them, I will continue to paddle as long as I can. The three of us also did dragon boat-specific crossfit all winter where they each took turns every week helping me with the exercises & the trainer modified them for me. Cultivate good friendships, they will see you through any storm.
Buy the best equipment you can afford: this advice I really got years ago from my friend Judy when we were discussing a recent optical purchase she had made. She had paid a lot for a pair of eyeglass frames she loved and when we were discussing how pricey they were, she said something I will never forget, “Look, I will wear these on my face every day for 2+ years, it’s important that I love them.” So I sought out the best carbon fibre made-to-measure sidearm crutches I could afford, and purchased a lightweight scooter that folds up like a robot for travel. I use these things to navigate the world, so buying cheap versions that don’t quite fit or that are a hassle to use is false economy. I consider myself very lucky to be able to make these choices.
Find a mentor (or group of people) like you:This is incredibly difficult when your diseases is super rare that >100 people in your country actually have it. Luckily, the ALS clinic did mention that there was a woman like me who had PLS for 15 years but no change in 8 years. I went home and found her within hours (all hail the power of the internet!). As it turns out, she is smart, hilarious, and fun to hang out with. She also received her diagnosis before they could really differentiate PLS and upper motor neuron-dominant ALS (the slower-moving type think: Stephen Hawking). She was told it was ALS and basically was sent home to die. Alas, she is the fighting type and questioned this and eventually got a diagnosis of PLS. She is still out there living her life, trying off-label drugs and keeping active. She inspired me to do the same and is an incredible model for not having to accept the finality of any decision.
Online groups can also be a source of info, which has led me to an exercise, supplement, and drug protocol that has changed my life exponentially. Luckily, I have a super supportive neurologist so if I bring him info about a drug trial or some research I have found, often he is willing to prescribe me the drugs (after he researches & we discuss the risks). When you have a rare disease, there is rarely any drugs or drug trials that apply to you so you research diseases that have similar degeneration and see if those drugs may help. Online groups have been an incredible place to seek out info and personal experiences.
Doctors don’t know everything but good ones will admit that: I am flabbergasted every time someone new joins one of the online groups and tells us what kind of advice they have received after their diagnosis. It varies so wildly that I am surprised anyone thinks they know anything at all! Find yourself professional support that encourages you to take charge of your health and who is open to exploring treatments that are outside the box. I am not talking about unproven and dangerous stem cell treatments in third world countries, here. I am talking about you doing some legwork through online groups & finding research on ePub that you can bring forward as evidence when you want to try a new protocol. Some doctors have even told their PLS patients that exercise is bad for them but one common thing amongst still-mobile long-term patients is that they keep moving as long as possible. Those that move are often still able to walk (mostly assisted) many years down the road. My neurologist and my GP are both supportive and I listen to them if they don’t feel like something is a good fit because we’ve established a trusting relationship.
Live your life now: I will be the first to admit that last year I went kind of nuts with the travel planning & buying a few things that could have waited. There was an urgency to live my life while I was still mobile and so I booked two trips: New Orleans in November, and then New York City for New Year’s Eve followed by a cruise down to Central America and through the Panama Canal ending in Los Angeles with four days in Venice Beach. A month later I was in the Bay area joining Mr. Tucker on a work trip. We have many friends in the area and so I had adventures in the Redwoods, driving down highway 1, and ending with a day in Napa Valley with Mr. Tucker. Naturally, these were incredibly expensive adventures but when you are facing down the loss of mobility, you make different decisions. In retrospect, I should have probably scaled back a bit given that I get so much more exhausted than an able-bodied person but I don’t regret having these experiences with friends and family.
Having said that, there are a million and one inexpensive ways to live life that don’t include throwing thousands of dollars at the problem and I am the first to admit I could have been more judicious in my spending. I just wasn’t last year, and frankly I don’t regret it.
Take your time, life has changed: I used to be a GOGOGO kind of person, always running from one activity to the next, enjoying every single adventure. If my bus came in 10 minutes, I would wait until 8 minutes out and then rush as fast as I could seeing if I could still catch it (often, I could). In fact, until recently I left many things until the last minute and often arrived late and exhausted. I packed life in YOLO style even though I was often exhausted. The consummate YES woman, I burned the candled at both ends which lead to the progression of my disease. Even after I was diagnosed, I failed to account for the fact that things just take longer now that I am slower. I’ve only recently begun to build in more time to get places and to say no to activities that would drain me, which says a lot about how long it’s taken me to accept my fate.
You aren’t weak for listening to your body: I look back and I am saddened by the way I abused my body over the years. I drank a lot of alcohol in my 20s and early 30s as well as stayed up late and didn’t eat as well as I could have. I pretty much lived my life in a state of perpetual exhaustion and because it was “normal” for me to ignore all the signs my body was sending, I am still learning how to navigate my energy levels today.
When I was diagnosed, my neurologist said, “with your job and responsibilities you have no energy left to give to yourself or your family.” He explained to me that unlike a normal person, everything I do takes twice as much energy, like I am doing everything fighting through quicksand, and that even a walk around the block for me was like running fast up a hill to everyone else. The stress in my personal and work life was the reason why my symptoms had flared up enough for me to finally notice and do something about it. It also explained why I was so depressed and cranky with those I loved and why I had nothing left to give anymore.
As I mentioned before, exercise is paramount to maintaining mobility but like a double-edged sword, exercise is also incredibly exhausting to me. So my daily exercise is almost always followed by a nap or else my voice gets hoarse and slurred and my muscles get weak. Even a short nap is like a power boost to my body. Learning that about myself was a huge A-HA moment that had been there all along but that I had ignored in the misguided attempt to pretend I was normal. Sometimes something as simple as having a crap diet for a few days or a bad night’s sleep throws my body into completely non-functional and I need to pay attention to those triggers and adjust my life around it.
You may want to retire early but having your career (and health!) taken from you hurts: Since I read Your Money or Your Life in my early 20s, I had always dreamed of quitting work while I was still young enough to enjoy life. There were fits and starts to this plan as I changed directions from running a small business to being a stay-at-home-parent to rejoining the corporate world as my kids got older. Still, having a good financial plan enabled us to weather many storms over the years. I am grateful I had those skills, especially last year as we lost a huge chunk of our income when I was suddenly off work.
Ironically, I had planned to retire at 45 and I guess at 42 I was officially retired – but through no plan of my own. LOLSOB, as the kids say.
For a long time I missed my job. I missed the people, I missed the creativity, I missed the vibrancy of being downtown. Mostly though, I missed having the CHOICE to walk away. Having that yanked from me was one of the biggest hurdles and for a long time I tried to devise ways to go back despite the fact my doctors told me that it wasn’t good for me. I have come to terms with it nearly a year and a half later but seeing a fun social media post from work, or seeing colleagues together at work function still kind of stings. It takes a long time to carve out a new life after one is taken from you and I am still working on it. I still miss the people but that is because they are awesome & I can catch up with them online, so not all is lost.
So welcome to the new blog. It will be a very similar format to Working Undertime except the change reflects my new reality as someone with a neurodegenerative disease. When I look back on it, it seems like a lifetime ago I wrote those posts on WUT, almost like I was a different person back then (and in many ways I was). This site will now be an intersection of disability, finances, travel, and living life as best as you can with what you have.
You would think that now that I have enough money from disability insurance to cover our bills that our financial story would be over – but you’d be wrong. Mr. Tucker continues to work a high stress job as a support manager for a high tech company which he has to balance between having a disabled wife, two school-aged children, a house to maintain, and his own hobbies. So our current financial goals include him becoming financially independent on his own over the next couple of years. We are staring down the reality that I could take a turn at any moment and he’d be left as the primary carer for me, which wouldn’t be possible with a job that requires many on call hours and working sometimes up to 16 hours a day. So, if anything, the urgency has ramped up. Also – and #diety forbid – if I pass away, there goes half of our monthly income. Sure, we have life insurance but having more money in the bank would ease the burden and help him transition to a new life without me.
So if you are new here, welcome to Post Morbus – latin for “after disease” (also it sounded better than Post Morbi). If you are coming over from Working Undertime, then I hope you enjoy this new trajectory. If you also suffer from a life-changing disability, I hope you also find comfort here. We experience the world in a much different way now and navigating that world can sometimes be difficult and demoralizing. There is still a lot of life left to live, though. I can’t change my situation but I can change how I respond to it. I have no interest in giving up just yet, and I hope you don’t either – no matter what challenges life is throwing at you.