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I don’t understand how a heart is a spade but somehow the vital connection is made* OR On Nostalgia (3 of 3)

I don’t understand how a heart is a spade but somehow the vital connection is made* OR On Nostalgia (3 of 3)

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have enabled us to have our social lives in our back pockets so the excitement of someone popping in for coffee has been replaced by the excitement of a notification of a new message.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.

/segue

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

It’s a cruel, cruel summer

It’s a cruel, cruel summer

This year we didn’t go away in winter, instead we saved our money in order to pay off our house (which we will do in September). So naturally, I spent most of the winter looking forward to the summer when I could spend most of my days in our gorgeous backyard swimming, gardening and enjoying the sun. I was also looking forward to getting back into Dragon Boat as I hadn’t been back since the pandemic.

Man plans, god laughs

The youngest child also joined a Dragon Boat team this year and we both spent Saturday of the Dragon Boat Festival racing, enjoying the company of our friends, cheering on other teams and eating fun food. We went home Saturday night and had a lovely sleep after a big day with an early start.

Sunday morning was already looking dicey with the wildfires but we headed off in a friend’s car under the glowing red ball that was the sun. I am kicking myself in retrospect but instead of changing into a pair of sneakers, I just kept my slide-on Crocs on. I should have taken the 2 minutes to change but I was eager to get to the tent and grab a coffee. We walked in the gates & I started towards the beach. Unfortunately, the grass/sand mixture was horribly uneven and I managed to clip my foot on a tree root and despite trying to catch myself, I managed to seriously hurt my foot, which started to swell immediately.

My teammates witnessed this, rushed over, got me a chair and an ice pack and a friend headed over to the first aid tent to grab one of the First Aid volunteers from the ski patrol. He came, determined there was nothing he could do and soon after I found myself whisked off to the hospital.

Poor Mr. Tucker: with the youngest and I off to the ODBF and the eldest off at a sleepover, he was really looking forward to a day to himself doing music and playing video games. Sadly, he had just sat down with a cup of coffee when I texted him to meet me at the hospital. I felt terrible.

Thankfully, we didn’t wait long to be seen and an x-ray, a CT scan and a stand-up x-ray later (REALLY? That was just mean). It was determined that I had a hairline fracture in my foot so it’s an air cast and 5-6 weeks off of my feet. A follow-up appointment with orthopedics the Wednesday of that week also saw a hairline fracture in my fibula. “You’re really great at breaking things,” said the orthopedic doc. Oh am I ever! The advice was the same for both fractures: stay off it for a bit over a month.

Teetering on the edge

The next morning Mr. Tucker went out and rented me a wheelchair which I have now essentially lived in for a month as I gaze longingly at my pool from inside the house. I would be lying if I said it has been an easy month of healing and binge watching bad tv. Instead, Mr. Tucker has now had to ferry the kids around to work and camps as well as manage day-to-day things such as meals and helping me in/out from the wheelchair. He had originally booked off two weeks in July so that we could get a bunch of house stuff done but that has been significantly railroaded by my injury.

He was cranky, I was cranky, we both feel cheated out of the summer we were looking forward to.

Going with the flow

As a distraction from all of the absolute CARP that descended upon us, I tried distracting myself in the following ways, all of which are working in some capacity:

Booking a winter trip: I contacted a local travel agent that specializes in accessible travel and started looking at a trip for March break. My life is a constant battle against the kid’s school schedules, money limitations and how my mobility is going. We’ve decided to splurge and just go on an all-inclusive trip this winter. We are still ironing out the details but it’s been a lovely distraction from having my summer being taken away from me by my injury.

Mr. Tucker and I sat down and did a financial plan – together: usually I create the plan and we sit down and discuss it. But I felt like a lot of it didn’t feel real to him and were just a bunch of numbers on a page. So we sat down with a clean spreadsheet and worked through our numbers together. It was a great exercise for him to actually help create the plan and see for himself how we can plot things for his retirement. He told me that this process made him feel a lot better about all of the bad luck. We also are both really excited about our goals!

Mr. Tucker finished the vacation chores: because things were absolutely bonkers, tasks that should have been organized and done on his vacation did not get done and he was feeling overwhelmed. So he enlisted the children and pretty much got almost all of the outdoor chores done, which allowed him to relax for the second week of his vacation.

I gave myself time and space to make a decision: …about dragon boat. In the end, I gave my seat in the boat up to a friend who is an amazing paddler and I switched myself to being a spare, if needed. I just needed someone who could commit to the team for the next festival and even if I did the full 6 weeks, it would only be two practices before I had to compete. It’s not great for the team so it just made more sense to give up my spot.

I discovered Task Master: which is a hilarious show where comedians compete against each other by doing silly things for dumb prizes. If you need to sink yourself into something hilarious and low stakes, I highly recommend it.

It’s still just horrible luck and I have another week or two until I can walk with any regularity. BUT on a positive note, I will still have a lot of August to enjoy the pool and the garden is producing quite well right now. I will still probably be able to get a couple of paddles in, and Mr. Tucker and I have been buoyed by our new goals. Life throws you curveballs and it can be super difficult to navigate them sometimes but eventually good things will happen, just wait and see.

What I’ve learned a year after diagnosis

What I’ve learned a year after diagnosis

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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.