I love that my last neurologist had a quick start guide – no one remembers everything!
The last time I went to the ALS clinic was in 2021 when I was told that unlike the other patients, I only had to go in every two years. As the nurse walked me out that day, she said, “Wow! You are the only one who gets such a long time in between appointments. It’s because you are doing so well!” I felt pretty proud of that even though I do have to admit that the pandemic made me do less exercise than I did pre-pandemic.
So Mr. Tucker took me to my appointment this year (broken foot means I can’t drive) and he got to experience a day in the Rehabilitation Centre. In general, the ALS clinic has the following appointments they book for their patients:
• Physical Therapist
• Speech-Language Pathologist
• Clinical Dietitian
• Respiratory Therapist
• Nurse Coordinator
• Occupational Therapist
• Social Worker
• Physiatrist (& the nurse coordinator)
• Respiratory Therapist
Honestly, I don’t need the other appointments so I don’t book them. I probably could do without respiratory as well and may skip it next time. My numbers are generally consistent and so I may just stick with the basics until I need more care. My neurologist I typically see in this main office at another hospital but he goes to the ALS Clinic once a week so I booked in to see him when he was there because it made sense to batch the tasks. Oh, I also got word from my PLS mentor C.H. that she was in clinic that day, so we made plans to have a coffee afterwards.
When I first was diagnosed with PLS I caught wind that another woman in the area had lived with PLS for a long time and was still fairly healthy. Although they couldn’t tell me who she was due to privacy reasons, I tracked her down online within a few hours (thank you career in Social Media!). Since then, C.H. has become what I would call a Motor Neuron Disease mentor to me. She has given me a lot of great tips and tricks from her experience of living with PLS for over 20 years and I am grateful for her wise counsel! She taught me the basics of what I needed to know to move forward in this journey:
1 – Doctors will batch you in with ALS patients because PLS is so rare but our trajectories are very different.
2 – Our lack of Lower Motor Neuron involvement means that we can build muscle and via exercise we can keep our balance more on track with physiotherapy.
3 – There are off label drugs that can help PLS patients by increasing balance and lowering spasticity.
4 – Barring other things (like a broken hip from falls), we probably won’t die from PLS. We have normal life spans.
Unfortunately, because PLS is a diagnosis of exclusion, usually you can’t make a PLS diagnosis until around the 5-7 year mark since the onset of symptoms. That makes it very tricksy indeed. I am on year 10 now and I haven’t seen a decrease in ability over the past 4 or so years, which means I have probably plateaued. We hear rumours of people with PLS who have gone full ALS after 20+ years but from what I can tell, no first-hand accounts. However, there are many people who have had PLS for 20 to 30 years who also have varying degrees of disability so it seems that people don’t have a consistent trajectory for this disease.
My favourite part of the ALS clinic has to be the amazing therapy dog, Copain (Buddy or Pal, in French). He’s been going as long as I have and he is such a calm, happy boy. To be quite honest, it’s the #1 reason to attend the ALS clinic! LOOKIT WHAT A GOOD BOY HE IS! LOOKIT HIS LITTLE “VOLUNTEER” NAME TAG!
My least favourite part is respiratory. Aside from the mounds of wasteful plastic, I feel like as an asthmatic my breathing changes day-to-day and in the 5 years of going to the clinic, my breathing hasn’t changed so significantly to warrant future appointments. So the next time I go, I may just skip this as well and just speak to the two doctors and the nurse.
My second favourite part is seeing my neurologist, Dr. B. we discuss current studies I can enroll in, new drug trials taking place, now & exciting research that is happening and just generally chit chat about my overall wellbeing. Then he tests my reflexes and spasticity, gives me another boatload of prescriptions and then he sends me on my way. I do have his email address & that of his admin so if I ever need to make additional appointments or discuss any challenges, that is the way to get ahold of him. I ended up sending him a post-visit email on some exciting new research happening but I generally don’t bug them unless I need to.
While I do enjoy talking to the nurse (amazing woman, so supportive!) it’s taken awhile for the physiatrist to come around. On one hand, I don’t blame her: PLS is often conflated with ALS and so people tend to see us as just a slower version of ALS* and the jury is still out as to whether or not PLS is just a form of ALS or whether it is its own thing (I tend to suspect the latter, but I’m open). The first time I met the physiatrist she pretty much shot down any inklings I had of “getting better.” On the one hand, I get it: neuro patients don’t typically get better. On the other hand, progression for people like us is often incredibly slow and there *are* things we can do to maintain balance and muscle. I think that for a long time she fell into the camp who believed that we were just slow-moving ALS patients so the advice for them is to not expend any energy they don’t need to because it would increase muscle wasting & they need to conserve energy. But after the years of C.H. and I doing physio and maintaining mobility, I think the physiatrist has seen the benefits of exercise and balance work. That’s great because people diagnosed after us will get the benefit of not being told that there is nothing they can do and feel like they just have to go home to die.
A word on healthy living: absolutely live the healthiest that you can. Go for walks, reduce stress, eat well, maintain relationships and balance in your life. But know this: there are some things in the world that you can absolutely not change. Those of us in the west are obsessed with personal responsibility. We’ve been told by the culture at large that if we do all of the right things that we will die in our sleep peacefully at 100 and that we won’t suffer the limitations of people who live unhealthy lifestyles.
The reality is though that there are some things that are random and unknown. A personal responsibility culture dictates that if ONLY you had done something different, the outcome would have been different: you won’t be depressed if you have gratitude and meditate. You got hit by that car because you weren’t crossing the street in X way. You got MS because you don’t eat an (insert current diet du jour here). We put the onus on the disabled and sick after-the-fact to tease out what they did and where they went wrong. Sure, sometimes that is the case but often there are societal factors that also prevent people from making the right decisions.
Things are probably a mix of genetics, behaviour, environment and randomness but it’s hard to determine for any individual to figure out what is from column A, B, C or some random column that we don’t even know exists yet. It sells books, makes TikTok’s go viral and makes people feel better about their decision-making process but it’s a false god: some things we won’t ever know and so you better get used to living with the uncertainty if you want to move forward and live your one, wild life to the fullest. Otherwise you can go down the dark tunnel of obsession and make your diagnosis the only thing that defines you.
Quite frankly, in my mind my diagnosis the explanation as to why I have limitations but it isn’t the excuse as to why I am not living my life. Instead of focusing on what I can’t do, I focus on what I can still do. Sometimes I overshoot and pretend that I am able-bodied (see: my broken foot & wearing flip flops & broken their foot on uneven ground. The physiatrist even said to me, “Even an able-bodied idiot would have probably tripped over a tree root in flip-flops.” …wait a second..!) and I end up paying for it. But more often than not I discover that there is a work around and that I can still do the things I enjoy but with a modification.
At the end of my day at the ALS clinic, C.H. and I went outside afterwards and sat on a bench to catch up. Mr. Tucker brought us coffees and kindly waited for me off to the side as CH and I chatted about the past couple of years. C.H. at one point turned to me and said that the physiatrist had said to her, “You know, some patients we have here at the clinic are a FORCE,” and CH said that she laughed and laughed and knew that she had been absolutely talking about me. Maybe that is where I am sitting in the grand universe of things: I am – and I continue to be – A FORCE.
Til the end, friends.
Copain and I feel the same way about filling out the ALSFRS-R score paperwork
*FWIW: there is also upper-motor-dominant ALS, which we suspect Stephen Hawking had, which makes the waters even murkier. But pure PLS patients don’t typically have lower-motor-neuron involvement, which can be determined by an EMG…but not always! Aren’t brain diseases fun (note: not at all).
Despite the Chinese government’s attempts to shut the phenomenon down, some Chinese youth are “lying down.” After years of being told to work hard and be successful, they came out into a post-shutdown world where they felt there was a bait-and-switch and that the life they worked towards didn’t actually exist.
They say there’s a snake that can shed it’s skin
when the good old days are wearing thin, but
the good old days have all withered and died
some go on livin’ on the sentimental side
– Spirit of the West
In the 90s and 2000s I was way too poor to have cable tv so I missed out on the FRIENDS phenomena. What I did see I thought was funny, so during the pandemic the Youngest and I binged the series. We both very much enjoyed it but I had to explain that, yes, before smartphones and computers you basically just dropped by people’s houses or went to the café or bar where people hung out. You knew that someone you recognized would show up eventually. I really miss those years where my friends all lived close by and we just all knew to get up and get dressed because dollars to donuts someone would pop in almost every day. Those days of, “we were in the neighbourhood and thought we would pop in” are long, long gone. Now if people randomly show up at my door I am HORRIFIED. Why didn’t you text first?
So I simultaneously romanticize the past & have changed enough that I wouldn’t appreciate a lot of the same things now. I think the difference is that smartphones have enabled us to have our social lives in our back pockets so the excitement of someone popping in for coffee has been replaced by the excitement of a notification of a new message. I think in some ways the past is the past and we need to live in the here and now but also, I feel like we could steer the present in ways where we get the benefits of the past with the tools of the future. But as studies have shown, Facetime™ doesn’t really give us the benefits of face time. It feels like real social interaction but it doesn’t hold a candle to the benefits we get from IRL hangouts. That isn’t to say it has no benefit – like I have mentioned before, I spend most of my days chatting with my friends who are spread out across the continent but it doesn’t replace getting together in the real world. Contrary to the meme, human interaction is important to well being no matter how you define your particular personality quirks.
And now for another segue…
When I was 20, I went through a phase where I had one breakup which turned my life upside-down. I moved out of the downtown core and in with my dad, started dating someone new and was enrolled in university. By virtue of this life overhaul, I suddenly found myself without friends. I am not going to lie: that first year was rough. Sure, I had a few friends but with my schedule and by virtue of being far away from the downtown core, I didn’t get out enough to maintain strong connections. It was a pretty lonely first year of university where most of my interaction was virtual.
I also lost my grandmother that year. I was really close to her but the last years of her life were punctuated by extreme agoraphobia and she hadn’t had friends in 20+ years. She would sometimes walk to the end of the driveway but otherwise she stayed inside and relied on my mother to do all of the outside-world stuff such as groceries and going to the bank. My grandmother had been raised in Lowertown surrounded by friends and her large extended French-Canadian family who all lived either in the same apartment or nearby. When she married my Irish grandfather it was after the war and he was eager to finish university, start a career in finance and buy himself a house in the suburbs. On the day they moved, my great-grandmother apparently wept because in those days the new house seemed so far she thought she wouldn’t ever see her daughter (hilariously, it’s now considered part of the core part of the city).
So my grandmother stayed home raising her kids in this new, suburban island, far away from everything she knew, adrift from those tight social connections & the boisterous French-Canadian family she was used to. I don’t get the impression that she had a lot of friends in this new, anglo-based suburb. Then tragically in the early 70s, her mother passed away and within that same year, my grandfather also died (at 54!), leaving her a widow with a teenager, my uncle. She dutifully took care of my uncle until he was married in the 80s and also babysat my brother and I after school. But as we got older and didn’t need her, she didn’t have people to take care of, which is really all she had known. With nothing to do, she slowly slipped inside of herself, basically staying home and watching tv. We did end up moving in with her in the early 90s but at that point she had no friends and relied on us to be her contact with the outside world.
Having that as an example, I was terrified of not having friends. So when I decided to move back downtown during my second year of university, I also made the resolution that I would go out of my way to make friends. I did manage to do that and have maintained many of those friendships over the years. I have to say even for someone who is outgoing, it was harder to try and build new friendships in my 20s after it coming so easy in my teens. I hear from friends who have moved a lot in their 30s and 40s that making friends is even harder the older you get: most people have solidified their relationships at that point and it’s really difficult to break through into social groups.
But having witnessed what can happen when you don’t have a few solid social connections I have really forced myself to hold onto the ones I do have. When we had kids, no other people in our extended social groups had school aged or younger children. Most were childfree. So we tried to attend as many house parties as we could without kids, and forewent the more expensive hangouts. It also forced me into making new friends amongst people who did have children and now I have a pretty solid group of people in book club and in dragon boat that I am lucky to count on for amazing hangouts. I think Gen X women maybe saw their grandmothers and decided quite rightly that we should try and stave off the effects of loneliness.
Now, as a retired woman in her 40s I have enough money to live and not worry about whether the bills are paid but I also have TIME because I am not working (what I don’t have is energy or as much mobility). Sure, some things have changed: the days of lounging around at friend’s houses all day are over. Many of us have responsibilities now that we didn’t have when we were young and carefree. We aren’t called the squeeze generation for nothing: we typically work full time while simultaneously looking after our children AND our aging parents. I’ve witnessed a lot of stress, exhaustion, and loss in these past few years as many friends have juggled so many things – all high priorities. But the point is: social connections are paramount and in the middle of your life when chaos is reining, it is hard to maintain those connections.
What if not working could bring back some of that nostalgia and connection in a way that is in-step with the realities of modern life? How many times have you genuinely said, “Gosh, this has been so fun! We really must do it more often!” knowing full well that you won’t? It’s money, it’s time, it’s work, it’s responsibility.
I’ve been thinking what *IF* we do it more often? And by we, I mean Mr. Tucker and I since most of our friends are still working. As we head into the home stretch of what hopefully will be his permanent retirement I am thinking of the things we haven’t been able to prioritize due to raising kids, having two jobs, maintaining a house etc. and re-prioritizing them – and the first one on the list is seeing friends more often. While the days of late nights in bars and cafes are over, I am sure we could meet them where they are.
A not-so-complete list of things we could do (or things we or friends are already doing) that are free or cheap:
– Bring lunch to friends at work and enjoy a lunch hour with them. No time for lunch? (problematic, but ok) bring them a coffee and have a quick chat.
– Host a Sunday night dinner for friends where they only have to bring themselves and any beverages they may want.
– Afternoon pool parties and BBQs. My friends typically bring something to share with everyone and then something to grill for themselves.
– Bring dinner to friends who are under a lot of stress.
– Put together a picnic for some friends and go to them. I have friends who live on the other side of the city who don’t have cars so this would be us heading to the east end.
– A friend of mine hosts movie nights in their backyard with a projector, which is a lovely thing to do and low stakes for everyone.
– Bike rides where you meet in the middle at a beach or park.
– Because we are a Halloween-crazy household, last year I organized two group outings in the city: one was a Haunted Walk and one was going to a local orchard that had haunted houses and hayrides.
– Meet for movies at a locally-run theatre: I love that one local theatre does a fairly-priced Saturday Morning Cartoon Party where you watch retro cartoons and they have an AYCE cereal bar.
– A local bar has retro pinball machines and all-day Saturday and Sunday they have FREE PLAY from noon-8pm for $10. They also have amazing perogies.
– I usually do a Winter Solstice party as a continuation from my Pharm days. Snacks and mulled cider for everyone! Covid canceled almost all of my plans for the last 3 years but I hope this year will be the charm!
– Our book club usually does a weekend away in November. Pre-Covid it was a cottage one year within driving distance and then away another year. We went to New Orleans in 2019. They’re going to New York City this year but I won’t be joining them because we have tight financial goals.
– Go rollerskating! The local volunteer group does these fun, themed events and they usually have both family and adult-only sessions. While I have yet to go, 4-Wheelies looks fun.
– We do a games and/or craft night with friends once a month. This month Mr. Tucker and I are going to whip up burgers and they can bring a side.
– Our community has a wild amount of engagement by our neighbours. In particular, one fireman always does a HUGE fireworks display on Canada Day and they close the street off for it. Our neighbourhood has a roaming tiki bar that everyone stocks and shares as well. On Halloween the same fireman makes a HUGE Haunted House for the kids and it is really quite lovely. Every year they also do a street party that is planned and hosted by anyone turning 40 that year. It’s pretty fantastic. I have thought of getting more involved by maybe booking the community house in the park behind us and doing a winter themed party in December – if I can convince the eldest to learn some winter-themed harp songs. Hah.
– During Covid the kids and I baked cookies around Christmas and delivered them to friends around the city. We used to do a yearly cookie decorating party with other families in our neighbourhood but our children outgrew it.
– Also during Covid because the kids couldn’t Trick or Treat we started doing #13DaysOfHalloweenMovies and #12DaysOfChristmasMovies where we would watch a movie every night and then I would post their reviews to Instagram. Friends told me they loved following along and seeing the whackadoodle things the kids would notice about beloved classics.
– We really should volunteer more with the Community Association, even if it is minimal.
– There are a bunch of winter trails (run professionally and run by volunteers – there are more but these are examples) that you can snowshoe or ski on. Round it off with a hot chocolate at the Sailing Club if you do both.
To be honest, there is an absolute ton of things you can do to stay connected. Sometimes I will just text a friend out of the blue to tell them that I was thinking of them. I have been blessed with an amazing amount of great friends and I know life can get away from us but honestly, I want to head into my golden years with these folks so I want us to make sure we stay connected – off of social media.
So thus ends the rambling series of nostalgia posts. TL;DR: I want to reclaim my one wild life now that I don’t have to worry about money. I want to take up video games again, see friends and connect with them as much as possible even if I have to do more of the heavy lifting. I want to get back that feeling of freedom and that anything is possible in the future. The other day Mr. Tucker said to me, “I cannot wait for the second half of my life to begin!” I can’t either!
*Apologies to Elastica
Earlier, in the spring, I was wide awake late at night while everyone else was asleep. Where I live, there are four definitive seasons and in my mind, the real start of spring is the day that you can leave all the windows and doors open and you don’t freeze your arse off. I grabbed a drink and sat down and started to watch a show. It was so nice being up late when everything was quiet with the warm breeze flooding the living room that I was instantly transported to what it felt like when I was young and spent most nights awake while everyone else slept. Instant nostalgia.
The next day Mr. Tucker and I chatted after dinner. “You know, I had a revelation last night.” Oh what, he asked. “I don’t have to keep normal hours anymore. If I want, I can stay up all night and sleep all day. I mean, I wouldn’t because I want the kids to see me have a normal schedule, but it hadn’t really hit me that I don’t HAVE to.” No, you don’t! He confirmed. I ended up telling him about the spring night air and how it made me feel and of course we both lapsed into a bout of nostalgia. Then I said something to him that surprised him. “I want to get back into gaming.”
Some history about me & gaming: in the 80s my brother got a Tandy computer from Radio Shack. Suddenly, an entire world of puzzles was open to my brain and we played hours upon hours of Space Quest, Police Quest, King’s Quest and of course, the pièce de resistance: Leisure Suit Larry. I fell in love with games as a kid with a special love for Super Mario, which I played on our Nintendo.
So of course, in the 90s I settled into a comfortable love of all the new games that came out. I was especially drawn to beautiful strategic and puzzle games like Civilization and Myst but I also enjoyed a bunch of first person shooters such as Space Hulk (I still have nightmares of them coming out of the walls). I played long, long hours sitting and trying to finish the levels eventually giving up only when I was too exhausted to play anymore. I flirted with gaming on and off over the years but it wasn’t an issue for me as a single person who had nothing but time. When I met Mr. Tucker and we started dating, we only had the one computer in the house that could play the more resource-intense games. We didn’t play much those days anyway. We had a decent income and spent a lot of time out with friends or sitting on the balcony having drinks.
Enter Baldur’s Gate.
Baldur’s Gate was the first video game that I had really gotten into in a long time and it was love at first play. Mr. Tucker and I took (resentful) turns playing it on the one computer but we both played really long hours. Not as long as I used to play when I was younger but still dedicating a big chunk of our time outside of work to it. Eventually, things came to a head one night when his 10-year-old son came over for the weekend. Naturally, he wanted to play, too. I found the anger welling up inside me of having to share *MY* time with him. I have always known that I have an addictive personality, but I was so shocked the level of rage I had at a child over a stupid video game that I actually just gave up video games completely. We both kind of did. I just didn’t trust myself to not get sucked into a black hole of lost time. Since we were engaged and had plans to get married and have kids soon, it also just made sense to leave gaming behind. I would be lying if I didn’t say I missed it, but my inability to control how much I loved playing made it detrimental to my larger life goals.
Of course, life moved on and now the kid I resented over the video game is an incredible man of 27 (who, incidentally, still loves video games). His dad and I went on to have two kids that are teenagers now and who are mostly independent. That, in conjunction with Mr. Tucker’s retirement being on the horizon made me think of building a gaming box again.
Mr. Tucker got really excited when I said this! He, too, was happy about the prospect of gaming again!. Also, as adults who have a decent income we could also now afford two decent gaming setups. As a consummate researcher of all big purchases, he has spent time reviewing specs and adding/deleting things based on research and/or pricing and he is having a great time doing it. The current goal is to buy the components and build the boxes around November (we still need to save a bit).
What’s hilarious is that every game I have wanted to play in the past 16 years I have stored in my head “for later.” When I mention them to Mr. Tucker they are always SO CHEAP (because they are old, like me). So I am looking forward to replacing my current social media scrolling with gaming. I don’t spend a ton of time on social media anymore but it’s going to be great to revisit some old favourites and discover some new ones!
So I have that to look forward to this by the end of the year, which is super exciting! So while that is one thing, this spring’s nostalgia got me thinking about the things I loved about being young and having more time than money. So now that I am old and have time AND money, can I get back to that feeling I had in my youth? (link updated Friday, August 11 – LIES! I posted on Sunday the 13th). Is it possible to go back in time and have the things you loved back then AND the things you love now?
Watch out, sweet thing, a change in the weather is all that you bring
–Love Spit Love
Because I have a case of the olds now, I tend to have a LOT of past to look back on. Mr. Tucker and I often reminisce about how we were young and (very) poor but despite it all, we did manage to have a good time when we were younger. A lot of it centred around friends and hanging out because that’s all we could really afford.
There were a lot of late nights with friends, drinking coffee at people’s houses, staying up all night playing games, listening to music, making music or painting, watching movies and a lot of walking and biking (we couldn’t afford bus fare). We’d go to bars and coffeehouses with change in our pockets and buy the one drink we could afford, and nothing else.
The one thing that separated me from many other people though (including Mr. Tucker) was that I was an early adopter of technology. I didn’t come by it honestly, instead I just happened to know a LOT of geeks and by virtue of knowing them, I had my first Freenet account when they were still in the B’s. I still remember when there was a magazine called MONITOR that listed all of the BBS’s in the area (of which my friends ran quite a few) as well as tech news and computer ads. At the risk of sounding misty-eyed, we were all super hopeful about how technology had the opportunity to bring the world together and how it could level the playing field for everyone to communicate.
Online you could speak to people from all over the world via IRC and usenet. I loved every moment of it and delved deep into niche communities of varying interests. I did often just stay close to home though, making friends on the Freenet IRC and staying up all night to chat with them**. We often found ourselves deciding to hop in our cars at 2am and we’d hit the 24-hour Perkins in the east end where we would drink coffee and smoke cigarettes until dawn. Those were some of my favourite years and I am still close friends with some of those people to this day.
I feel like every generation has a time that they are nostalgic for. A time where things seemed simpler, where you felt more connected with friends, before the demands of life got in the way. But of course, if we are honest with ourselves, we are only really romanticizing the good parts. I remember poverty being an absolute shackle, keeping me stressed about a series of shitty minimum wage jobs and worrying constantly about paying rent and trying to stay fed. I remember the relentless calls of the bill collectors and the awful way they would make you feel so small. It was frustrating to be bone tired and still not have money to do things. There were some genuinely horrible moments where I felt so stuck that I could barely breathe.
Strangely, my salvation came from an unlikely place: a book of the month club. Like it’s more famous cousin, Columbia House (full disclosure, I also had CH!) was for music, BOTMC was for books (obvz). The premise of all these club was the same: get X amount of products for a Y amount of money and then promise to buy Z amount of products at the regular price. For those of you young enough not to know, these companies practiced what is known as negative option billing. That means if you didn’t send in a postcard saying you didn’t want that month’s selection, you got sent the selection and were billed for it (usually, at a higher price than retail). Being young and stupid, I regularly did not send in the cards and I ended up with a lot of books I wouldn’t have chosen otherwise. One of those books was The Tightwad Gazette II. It changed my life.
Arguably, the TWGII is the least interesting of the three TWGs but it opened my mind to this radical idea: you could reduce your expenses by making better choices and end up with the same lifestyle for less money. Cooking at home was cheaper than eating out. You could save on your energy bills. You could buy everything you needed on the secondhand market. I know this all sounds low stakes in 2023 where every second personal finance blog extols the virtues of frugality but to 18-year-old me in the early 90s, it was a revelation. When I finally got to TWG III I discovered Your Money or Your Life in an article and my life has not been the same since.
Clearly, we know how this story ends: I retired at 42 with a disability pension. We recently paid off our house, the kids are thriving, and shortly Mr. Tucker will hopefully be retired as well.
But this means that it is also the start of a new story, which we will start with a wee bit of a segue… in the next post, to be released on Wednesday, August 9th.
*with apologies to Kevin J Thornton
** Freenet had this thing where it eventually moved to only giving you 2 hours a day in 1 hour increments – and then it would kick you off and you would have to call back. It had become so popular that in order to balance the load, you could only have unlimited time between 11pm and 7am so we all hopped on during the unlimited time.
Mr. Tucker opening the door of our home the day we got the keys
Our plan has always been to pay off the mortgage as soon as possible. Partially, it was because Mr. Tucker said that he would feel more comfortable with the guaranteed payoff but also as the prime rate got higher and higher it just made sense. We were set to renew for another term this September and we knew we wouldn’t get that sweet 2% interest that we’ve had for the past six years. So we rolled up our sleeves, didn’t take a vacation this winter, and we funneled every extra cent into savings.
Yesterday, Mr. Tucker walked into the bank, handed them a cheque, and walked out with our payout and discharge noted. He felt great.
Eyes are going to roll if I bring up the rent vs. own debate here and drill down into the financial quagmire of it all. Honestly, people who are smarter than me have done a great job of discussing the nitty gritty. What I am going to do though is discuss my own thought process because as a disabled person I feel like that changes a lot of my decision making. So let’s go for it:
Renting isn’t throwing your money away: that’s like saying that we shouldn’t eat because some of it lands in the sewage system. Shelter – like food – is a need, and you need to have shelter. Many of my friends rent and it suits them just fine because they don’t have to deal with the hassle of home ownership. But that brings me to the untold story about renting…
A lot of my friends who rent are either well off or very poor: let’s face it, the buy vs. rent debate can only really happen for people who have the privilege to make the choice. My rich friends rent because the premium on their time and money is important to them and my poor friends rent because they have absolutely zero choice in the matter.
During the pandemic when housing prices exploded, I saw friends get evicted because their landlords sold their properties. In our province, your rent is controlled under certain circumstances so if you live somewhere a long time your rent will be much lower than current market rents. But in a situation where home prices and rents start soaring, you risk eviction into a high-priced market. If you have a good income you probably will be mildly irritated but if you are a low wage worker or you are on disability, your options are very, very limited. Since we have a housing crisis in Canada right now being a low-income renter must be terrifying. Renovictions and other sneaky tactics are at an all time high and they can take years to resolve with the Landlord-Tenant Board. I think the stress would break me.
Disabled people also tend to be poorer and being poor can sometimes mean bad credit or no credit. Getting a rental without a credit check is really difficult in 2023.
Finding an accessible rental is near impossible: when you are able bodied and have money, you have a world of options. You can rent a small shithole and save a fortune. When you are a wheelchair-user, for example, you need more room and more accommodations within the house from shorter counters to handrails and benches in a roll-in shower. More room costs more money and few landlords would pay to renovate a current space. Your options are generally subsidized or co-op housing but that could mean years on a waitlist.
Even for disabled people who have the money to buy a home, the costs can quickly spiral. Developers are generally not keen to change things even if you bought a condo from plan, which means you will be on the hook for renovations to make it habitable. If you buy a pre-owned home, renovations generally are needed too.
Why don’t you just move to a lower cost of living area!?: this is decent advice for people who have the option but for someone like me who has a bunch of specialists who know my needs, accessing health care in another area may not be as easy. For those of us who spent years getting a diagnosis and who have built solid relationships with their care team won’t want to risk having to restart the process in a new area and risk getting a care team that doesn’t suit our needs. For example, a friend of mine with a heart condition has considered moving to the country but right now he is an 8 minute drive from the Heart Institute. Would you risk not having the care you needed in a crisis?
Which brings us to the fact that most hospitals and specialists tend to be concentrated in urban centres of large cities that are accessible by public transit. Most disabled people use some sort of public transit to get around as private hires can be costly and the options are limited.
I like to give my kids stability: I have read some stories about how people moved around a lot as kids and were fine with it. I am glad they had a positive experience or a higher purpose that made it worthwhile. I had to move thrice as a kid and I hated it. I really wished for some kind of stability in my life. When we moved to our current home, the Youngest struggled a lot as well. They had a really hard time adjusting and were really upset about moving.
Of course, things happen and there are myriad reasons that families are forced to move – both negative and positive. But it was a priority for Mr. Tucker and I to give our kids a home and so we made that happen. If something happens to Mr. Tucker and I am left with the kids in our bungalow, I can manage because…
We make continuous accessibility improvements: when it became harder and harder for me to step into the tub, we installed an accessible tub. Because our backyard has a lot of steps, we hired a carpenter to build ramps. As the years go on we don’t know how mobility will be because everyone with PLS is different. So as owners, we can adjust our home as necessary and…
We get tax credits related to accessibility improvements: so when we do renovate to make our home more user friendly for me, we do get some tax credits for it.
If the housing crisis continues, we can renovate for our kids: the vacancy rate is under 2% and the average one-bedroom condo is renting for $2000 a month in our city. Who knows what the future holds as we bring many new (much needed!) immigrants into the country over the next few years? I suspect that it will get worse before it gets better and that housing prices won’t see a drop but more of a stagnation or small increase.
On our property we could theoretically renovate our basement to put in a two-bedroom apartment as well as build a coach house in the backyard. If our kids needed a place to go, we could do that. If we found ourselves suddenly needing more income, we could rent out some space. I like the idea that we have a property that gives us options. Or, if need be we could always…
Sell the house if we need money someday: I don’t like the saying, “My house is the best investment I have ever made!” Because most of the time the people who say it will admit that it is usually one of the only investments they have ever made. Having said that, it is still worth something. While I wanted a home to put down roots and raise a family the time may come when I am forced to move on and selling our home may end up paying for Long Term Care.
We were lucky in the fact that we were able to save for our kid’s education, Mr. Tucker’s RRSPs AND were able to still pay off the house. The flip side of that is that I know folks who wanted the stability of a home to raise their families but didn’t have much in the way of other savings after that because their salaries were so much lower. People also may be risk adverse (often, we forget that not everyone is as interested in this stuff as we are). So they get the stability of raising a family for many years, paying off their mortgage as they go along and when it comes time to retire, they sell the home and use that as their retirement money.
Sure, it may not be the best option for the finance nerds who optimize every penny but the reality is that most people aren’t optimizers looking for ways to eek out a percentage point more from their investments. They like safe bets* and paying off a mortgage is a safe bet to them.
I think rent vs. own comes down to your own personal priorities and preferences (if you have options). I always find these conversations about GOOD vs. BAD disingenuous because as we all know: personal finance is personal. Also – and as much as the FinBros think it doesn’t – feelings matter! You need to be comfortable with your decision and be able to sleep at night.
For Mr. Tucker he really, really, really wanted to pay off the house and so we worked on that even though for the majority of the time we saved, we would have made way more on an index fund. In retrospect with the prime rate being so high it was a smart move to not have to renew in September at an exorbitant rate but we didn’t have a crystal ball: it was a decision made purely because it worked for us.
Home, sweet home
*I am definitely not entertaining the “bUt It iSn’T rEaLlY, lOoK aT mY dEtAiLeD sPrEaDsHeEt…” Yes, inflation is a thing. Yes, they could probably make more in an index fund but if they WON’T do that because human psychology being human psychology, this is at least something.