Most books that top my favorites list haven't been written with a linear timeline. They jump from past to present and back again, in no particular order. For some, it can be very confusing but for me, it's fascinating to see fragments of a story and then finally piece it all together in the end. I suppose this is how I see my life. One day I'll reflect on how these struggles, endings and beginnings piece together, all of it messy and disorienting in the process but beautifully connected and complete when it's done.
It seems only appropriate that I include the beginning of our experience with Multiple System Atrophy – before the walkers, wheelchairs, hydraulic lift chairs, neck braces and many other medical aids that come with palliative care - after some present day posts.
This is our beginning of endings.
My mom was active and strong and I always believed that she would be one of those old ladies that just never really ‘got old’. She would be that Granny I couldn’t keep up with – she would be running marathons and triathalons and taking my babies on all sort of adventures (in real life or in their imaginations). She would be riding a Harley Davidson motorcycle with my Dad and keeping meticulous score at all of her grandchildren’s sporting events. Or creating alongside them with paint, Lego or a hammer and nails. And she would spoil us with delicious cooking until she was at least 100 years old. Her grandma was who I saw her becoming – living in her own home until 100+ years old and making my grandchildren drink tomato juice with cookies.
It was not especially concerning to me when she seemed to have issues with bladder retention. Isn’t that what happens when you get old(er)? After you’ve had babies? Don’t you pee a little at almost everything? It was a bit strange though, as the years went on, that mom had to say no to different runs/races with friends because she just couldn’t do that anymore without needing to pee. Because when the need came, you HAD to address it immediately. We got used to pulling over on the way home from Winnipeg or Brandon – it became a joke actually. As kids we didn’t see how concerning this was for mom or how often she saw our family doctor to figure out what was happening.
That wasn’t the only thing that happened though. Mom started feeling faint when she stood up or did something too quick, and she started needing my (then teenage) brothers to help her open jars of food randomly. Things like that were so weird because mom was strong. Looking back now, I honestly can’t tell you why we weren’t concerned when she started losing her balance or getting dizzy. I can tell you that it annoyed us kids and we weren’t the most patient with her at times. Why was she acting so odd and so helpless at times? This was not mom.
I planned a wedding with her help and prepared to moved to our farm/house when Brad made the career change from ‘farmhand’ to ‘farm owner’ almost a year after our wedding. She listened to my dreams of what could be with that house and supported my paint choices when others were skeptical.
In early 2011, Brad and I took a vacation to California. Mom and Dad were going to Phoenix to stay with some of their good friends at the same time so we planned to go visit them for a time during that trip. We enjoyed our time there with them - driving around Arizona, shopping at Anthropologie and eating at some of their favorite restaurants. My parents have always been affectionate – holding hands while they walked was normal – but it was on this trip that I noticed they walked with linked arms more often than not. I brushed it off as them being cute and nothing more.
There was the time the four of us went to use the pool though that wasn’t as easy to brush off. We were visiting and floating around the pool, when suddenly Mom was struggling to get upright, to get her head above the water. I think we all just kind of stood there for a moment, watching in disbelief, before Dad helped mom. While my mother was not the strongest swimmer, my parents have a pool on their yard so this situation in the shallow end was confusing and disturbed both Brad and I.
A few months later, we told our families that we were expecting a baby, the first grandchild, which was also just before my brother left to play hockey and serve with Hockey Ministries International in Sweden. I began to notice that when Mom walked, she started becoming a bit hunched over and was wobbly if she didn’t have Dad for support. I would sometimes meet her at the end of a road to drive somewhere together and there were times when she couldn’t seem to pull herself out of the car (due to the angle it was parked on, on the side of the road). I can still visualize seeing her physically fall into the car on more than one occasion.
I had been attending a Stampin’ Up card class with mom – it was our monthly thing to do together. She loved it and as my due date grew closer, I kept going for her so I could relay the instructions if she couldn’t be there. It was at one of those classes that I found out she finally was given a diagnosis for these unexplainable symptoms and behaviours. I can’t remember if I knew she was in Winnipeg to see a specialist or if I thought it was for something else, but I do remember getting a text from her in the ‘snack break’ and feeling my heart quicken, chest tighten and my mind race.
“The doctor thinks I have a form of Parkinson’s”
I can still remember feeling frantic and my thought process become jumbled, trying to get to the nearest bathroom and away from all the other women, tears threatening to escape and panic starting to set in. I called her and asked in as many ways as I knew how, “What do you mean? What does this mean? What did he say exactly?”, hoping that I would hear her steady voice reassuring me that it wasn’t as big of a deal as my anxious mind was making it. She did try to calm me down – I was crying hard – but I could tell she was scared. I could tell because that wasn’t something mom was often in front of us. She told me to go back to the card making and we would talk about it later. To the credit of those women there, they gave me space to re-join the group, visibly upset and red-eyed, without addressing the obvious (me and my red eyes). This also happened days after my brother had boarded his flight and arrived in Sweden.
Fast-forward a few months to just before Christmas/my birthday. Brad and I were renovating our bathroom and attempting to clean up our basement before our baby arrived. Mom and Dad joined us on a trip to our nearest Home Depot where we picked out our needed items – all of which were a compromise of what I wanted style-wise and the cheapest items available to suit our minimal and self-imposed budget. Most of that trip is forgettable, as most menial life events are. That is until we approached a red light at the intersection of 18th Street and Victoria Avenue. That’s when the memories become life-changing and visceral.
Dad nervously started to bring up the latest appointment they had been at in Winnipeg – a movement specialist who was to provide a bit more information on her diagnosis. I vividly remember all of the shared glances – between Brad and I in the front seat of our truck, between mom and dad in the back, and between them and me. It seemed hard for them to maintain eye contact with me though.
“The specialist thinks mom has what is called MSA – multiple system atrophy”
I remember thinking “oh this is good! It’s not Parkinson’s! It’s not so bad!” I think I even said something of that sort to them.
“Well, actually… it’s not better. MSA is a faster progressing disease. Mom’s case is kind of rare since it usually affects men and those older than her”
“So… what does that mean? Does that mean there’s a timeframe or something…”
“The doctor says the average life expectancy is 7 years”
And then things go foggy again. I don’t recall a lot of small details.
I remember thinking in the early stages of my pregnancy how I was so happy to have my mom around, since she lost her mom to cancer the spring before I was born. I was proud that my kid(s) would know my mom in a way that I never knew hers. Disease and loss wouldn’t touch my child’s relationship with their grandma until long after it had been established, much less before it even started. All of the things my friends experienced in their relationships with their grandmas that I never had, my kids would have. After driving home from Brandon that night, I remember thinking “Karla, you’re such an idiot. Why did you say that out-loud? That selfish future will never happen now that you said it.”
The story I had imagined playing out had come to an abrupt end.
It was 6 years this August since my mom was first diagnosed and I received that text. I can barely wrap my head around that most days. It doesn’t feel like that long, as though this only happened the other week, and then other times I can’t remember what my mom’s strong, healthy voice sounds like or how it felt to have her hug me. It feels too long and way too short at the same time.
I’m in constant amazement at how devastating the loss of a perceived future is or how often I’m caught off guard by something else we will never experience with Mom (again or at all). And then conversely, how guilty I can feel when I think of all the experiences I’ve had my mom for that my brothers won’t. I have been in a confusing state of grief for 6 years now, which means that many of the wonderful things we have experienced as a family are bittersweet.
We have constantly been saying goodbye to small and big things for all of those years, closing the book on the stories we were unable to finish or, in many cases, begin. Life with a loved one dying of a terminal disease can sometimes feel as though we are always anticipating the next loss.
But, as with many stories that impact us, we are rarely prepared and the endings catch us by surprise.