Acceptance with a twist(er)

I’ve been sick for a pretty long time now. Ten years, to be exact. Well actually, if we’re being exactly exact, then it’s ten years, two months and five days.

That anniversary used to be a bigger deal to me than it is now. I expected the ten-year anniversary of getting sick to feel like this big heavy thing, but to be honest it really wasn’t a huge deal. I didn’t even feel the need to write about it!

If I hadn’t gotten sick ten years ago, would I have ended up sick eventually? Would some other combination of environmental factors have combined with my genetics and turned my immune system against me? Maybe. Probably. To some degree, at least. Would my life have turned out this way anyway? I’ll never know, and it doesn’t feel productive to spend too much time wondering.

Because I did end up sick and my life did turn out this way.

It used to be that every year when that anniversary came around, I would think wow I can’t believe it’s been three…five…eight years and I’m STILL sick.

But now? Now I’m at a place where I just think well of course I’m still sick. This is what my life is. An existence built around illness is really the only existence I’m familiar with anymore. It’s certainly the only adult existence I have ever known. And I mean that in a matter of fact way, not a woe-is-me way. It just is what it is. It’s ten years later and we’re here and we’re doing this and it’s okay.

Acceptance.

Ten years to the day of being sick felt like acceptance.

Until.

A few weeks later it was November and people started talking and sharing posts about how there were only two months left in the decade. Which is when it hit me that I will have been sick for the entire decade.

Did anyone see where I put that acceptance I was just talking about? Because I can’t seem to find it anymore.

Being sick for ten years is okay, but losing an entire decade to illness? Not okay! Not fair! I guess when I think of being sick for ten years, it feels more open-ended? I’m still doing it. But when I think about having been sick for the entire decade, that feels finished. It’s closed off. Over and done with. It’s just gone.

An entire decade, gone. Where would I find myself at the end of this decade if I had never gotten sick?

Just like before, I’ll never know. I can imagine where I would be in life, but I don’t know. How could I know? How could anyone a decade ago have known where they would be today? And how can anyone today know where they will be at the end of the next decade? A decade is a radically transformative amount of time.

But it’s also just that. A unit of time. A period of ten years.

On October 11, 2019, I had been sick for a period of ten years. An entire decade. And every day since then, I have been sick for an entire decade. More than that. A decade plus two months and five days, now. And I’m okay with it.

Still not really okay with this whole being sick for the entire 2010’s business, though. And if you are wondering why I can accept one and not the other, even though they are essentially the same thing, well, I have no good answer for you.

And that’s okay. Because one of the biggest lessons this decade of being sick has taught me has been about acceptance, that acceptance is neither all or nothing, nor is it an endpoint.

We hear about the stages of grief and we think that once we’ve reached acceptance then that’s it. We’re done. We did it. We’ve grieved. Next.

Yeah, no. In my experience, that’s really not how it works.

Twister

It’s more like a game of Twister, where acceptance is the red circle you’ve got your left hand on but your other limbs are tangled up elsewhere. Then life calls out “left foot red” and then “right hand blue” and just when you are ready for a “right foot blue” and for your life to be solidly and steadily squared up on one corner of the mat, life goes and calls out “right foot green” and ruins it all. Not just any green circle, by the way, the green circle in the opposite corner from where you are building your foundation. Because when life is in control of the game of Twister spinner, it gets to pick not just the colour but the exact circle.

Time passes, life changes, and after a while you have an entirely different perspective; now acceptance feels like the yellow circle your right hand is on. That’s when, of course, life calls out “right hand purple” even though there aren’t any purple circles.

Basically anytime you’ve found a place of acceptance you can be sure that in time life will be there, spinner in hand, ready to shake things up.

It’s not a perfect metaphor.

Really though, what’s what acceptance feels like. It’s there, and then it’s not. You’re there, and then you’re not. You can accept “ten years” but you can’t accept “the entire decade.” Your right hand is on red but your left is on green, you’re still thinking about that blue circle you couldn’t reach a few spins ago, and all the while you’re trying to find orange.

You can accept that acceptance is not an endpoint, and then you can’t understand why you can’t just be done having to accept the same thing over and over again.

Acceptance. It is not all or nothing and it’s not forever. We can’t expect that from ourselves and just as importantly, we can’t expect that from each other. It’s also not a logical thing. It doesn’t follow a standard timeline. It looks different from one person to another. And a lot of the time it comes down to a spinner we have no control over.

So I guess that where I am after a decade, two months and five days of being sick is hand over hand under foot, tired from a long game of Twister that I never wanted to play in the first place. But trying to enjoy it as much as I can all the same.

It’s ten years later and we’re just here and we’re doing this and it’s (mostly) okay.

That B word…Birthday? Better? Blood?…It’s Blood. And P.S. Plasma, too

It’s my birthday this month. I’m turning 28.

I don’t really like my birthday. It’s like oh look time keeps passing and you’re still sick and your life still doesn’t look anything like you hoped it would and also you’re older so now it just stings more that you don’t have any of those things you want in life…but yay happy birthday.

One year older, still sick, and usually sicker than the year before.

But this year is a little different.

Don’t get me wrong, I’m still not stoked about the getting older thing. I’m trying to be more like my brother in this area. My brother is the most laidback person I know, which is either wonderfully refreshing or terribly exasperating, depending on my mood. He turned 30 this year and when you ask him how he felt about it he just shrugs. The other day I was telling him that I wasn’t feeling thrilled about turning 28 when he sagely asked me how I felt about turning 27, 7 months, and 3 days. I of course said I didn’t care about that and he then asked why 28 was any different.

Well, fine, big brother, be all annoyingly chill about everything why don’t you and I’ll just stay here and have this existential crisis on my own.

Okay but as I was saying this year is a little different. I’m still sick, but, I’m not sicker than last year. Not only that but I’m actually better than last year.

I am always so hesitant to use that B word because it’s like a starting pistol in the race of jumping to conclusions. You say “better” and people hear “all better.” They assume better-the-end-point as opposed to better-that-relative-place-that-is-anything-but-a-fixed-point. Illness and better are two concepts that are so congruent in our minds that it can be hard for people to wrap their heads around the idea of being better than before but also still being really sick.

But with that disclaimer in mind, yes, I am turning 28 better than I was when I turned 27. And for the first time in I-don’t-know-how-many years, I’m not just hopeful that I will be able to say the same thing when I turn 29, but I actually see it as a realistic possibility.

Although there are a lot of different elements at play here, I owe part of this improvement to one specific treatment, and so I actually owe it to all of the blood and plasma donors out there.

I know I haven’t shared many health specifics here in recent years, but we have figured out that I have an autoimmune disease, and for the last year, on and off, I have been receiving a treatment called intravenous immunoglobulin (IVIG), which is a blood plasma product made from pooling the antibodies of blood and plasma donors.

When you donate blood, your donation is separated into red blood cells, platelets, and plasma. Plasma is the liquid part of the blood that contains all the proteins, including antibodies. Some of that plasma is used directly for plasma transfusions, and some of it is manufactured into immune globulin products for IV or subcutaneous use. Plasma can actually be donated on its own and more frequently than whole blood donations can be made. If you live in the U.S. you can even be paid for your plasma.

e602afd2-49a7-458e-9e30-186e0c0fad35I don’t know exactly how IVIG works when it comes to autoimmune diseases, because medicine doesn’t even know, but it somehow stops my immune system from attacking cells in my body that it shouldn’t be attacking. It’s not a cure, rather an ongoing treatment, and not an easy one, at that. The side effects are sometimes as bad as, and at times even worse than the symptoms we’re treating. 

But as a result, for the first time in close to ten years, my overall quality of life is improving instead of worsening.

I am so grateful I don’t even know how to put it in words.

I am also terrified. Because there is a global IVIG shortage right now. Because demand is outpacing supply. Because every day I go online and see another person talking about how their treatment has been cancelled. Because I don’t know if one day that will be me. Because the last time we stopped my IVIG I lost all of the progress I had started to make. Because I don’t want to go back to where I started. Because even though my everything now is not at all what it used to be, I don’t know how I will get through losing everything. Again.

I hate that there’s nothing I can do about it. Because the only way to increase supply of IVIG is to increase blood and plasma donations.

And I can’t donate blood.

I always wanted to. I signed up to donate during my first semester at university, but that is the semester I got sick and never got better. That is when, unbeknownst to me for more than nine years, I developed the autoimmune disease I’m receiving IVIG for today.

And just as I hate that there’s nothing I can do about it, I also hate asking for help.

Yet here I am, asking, because I can’t donate blood or plasma.

But maybe you can.

Before you feel the need to justify to me why you can’t be a blood donor, please please please, you don’t need to! I’ve spent the last decade woefully saying, “I would if I could but I can’t!” every time I hear or see a commercial calling for blood donations, feeling the need to explain myself anytime anyone shares a post about it. I know there are so many reasons, including reasons beyond just strict ineligibility, that keep people from donating. You do not owe me an explanation.

However, if you’ve ever wanted to be a donor…have ever thought about being a donor…are a registered donor who has been meaning to make another donation…or are right now considering it for the first time, I encourage you to please take some action! Even if taking action means just starting by learning more on the Canadian Blood Services website. (I don’t know how it all works in any other country but I am confident that Google can help you!).

And if you already are a donor, please know how grateful I am to you. I am grateful to you every time I get to eat a little bit of something new, even if I feel sick afterward. I am grateful to you every time I get to delight in playing with my nephew, even if I am too tired to move for the rest of the day. I am grateful to you that when I turn 28 this month I will have something I actually want to celebrate.

I am still sick and I am still in pain, but in my spirit I feel more like myself than I’ve felt in a really long time, which is a kind of healing all on its own. And for that I am so grateful.

To past, present and future donors, all I can say is thank you.

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In memory of a kindred spirit

I feel incredibly lucky to be able to say that I didn’t lose my first grandparent, my mom’s dear dad, until I was 25 years old. Not many people can say that. And I didn’t just have grandparents that were still alive, but I had them in my life, nearby. Nearby enough, anyway. My entire life my grandparents have lived an hour away from me and five minutes from each other, so sure I didn’t see them every week and maybe not even every month, but they were there, especially when it counted.

I know how lucky I am.

Still, I am incredibly saddened that two years later I’ve lost another one. My Grandma. My dad’s mom. My proper, quirky, practical, stoic, thrifty, particular, gem of a grandma.

As a kid, it’s hard to understand what a chronic illness is. Terms like autoimmune disease and arthritis don’t hold much meaning. What you are able to understand is that between your grandma and your grandpa, your grandpa is “the fun one.” He’s the one who takes you out for long walks on the beach in front of their house and builds forts with you out of driftwood. He’s the one who teaches you to play croquet on the grass. He’s the one who makes silly jokes. Your grandma spends a lot of time sitting in her chair.

And as a kid, what you are able to understand, is that between your two grandmothers, your grandma and your grandmere, your grandma is harder to relate to. She cares more about manners and is more set in her ways. She’s the one who, when you’re eight years old and lying on the floor in a long old-fashioned dress-up skirt, tells you the importance of being ladylike and sitting properly. She shows less emotion and is more stoic, so you never really know what she is thinking or feeling. A blend of how she was raised, a childhood on the farm, and her generation.

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All The Thrift Shop clothing

She is also thrifty. Very thrifty. She volunteers in a thrift shop, after all. The Thrift Shop, as you grow up calling it. Most of what you wore in your early years when your parents didn’t have much money came from your grandma through The Thrift Shop. And most of your family’s housewares. And this thriftiness combined with her quirkiness always makes for really interesting gifts from The Thrift Shop. Like the Christmas morning you open up a plush cat with masking tape on the paw reading “press here” that when you press it the cat meows calmly for 15 or so seconds before screech-meowing while the whole cat starts shaking, a feature which startles you so much that you throw the cat out of your hands. Your grandma is also completely taken with the idea of free toys and games in cereal boxes, and so she buys cereal just for the Tony the Tiger watch or the computer game inside. These freebies show up as part of birthday and Christmas gifts. You aren’t always sure what to make of your grandma’s gifts but by golly you always phone her to thank her, because that is the kind of thing that is very important to her. You do the same after every Valentine’s Day card and Easter card and birthday card, always with a $35.00 cheque inside.

As a kid, you love your grandma and you know that she loves you, too, but you also under-appreciate her in the way that most kids do their parents and grandparents.

And then you’re not a kid anymore.

You’re an adult now, and you get sick and your life falls apart. And you all of a sudden find yourself far less busy and scheduled because of the whole being too sick to do much of anything thing, so you make more of an effort to keep in touch with your grandparents. Your grandma has email now, and an enthusiasm for email joke and cartoon forwards like none other, so you start emailing your grandma.

And as an adult, now that chronic illness, autoimmune disease and arthritis are no longer just medical terms but the terms written in your own medical chart, you start to see your grandma differently. You know why you have so many memories of her sitting in her chair. You recognize how much pain and fatigue she must have been in all the time. You are able to see how important spending time with you and your siblings and cousins was to her because of the effort it must have taken her to just be present. You start to understand her in a way you wouldn’t be able to without that shared experience of living in a body that doesn’t follow the rules.

And you come to understand that she is able to understand you in a way that so many people just can’t.

You know how important education is to your grandparents. Higher education is part of the culture of that side of your family. You know that before she was married she studied to be a PT/OT. Then there’s your grandpa the dentist. Your uncle with the physics PhD. Your other uncle the doctor. Your dad with a master’s in engineering. Your siblings and cousins all with their degrees. And because education is so important to them, you know that when each of your siblings and cousins finished their degrees your grandparents gave them $1000 as a congratulations.

Then one day you get mail from your grandma and it’s a certificate she drew up herself congratulating you on graduating from The School of Hard Knocks. With a $1000 cheque. Because your grandma just gets it. Because she lives it herself.

When it comes to her own health your grandma is quite stoic. She doesn’t complain. You remember your grandpa, your mom’s dad, always telling you about running into her in the grocery store and how she would always give the same answers after he asked her how she was doing…”oh you know, I’m fine”…”well now, I’m okay” and you realize that you have the same go-to answers.

Over time your grandma lets down her guard more and more in her emails. She talks about pain and frustrations and sadness and challenges. You swap doctor and hospital stories. You know she got sick in an era when talking about being sick wasn’t as accepted as it is today. There were no online support groups and she didn’t have all the information at her fingertips like you have to learn as much as you do about what’s going on in your body. You feel sad for the isolation and loneliness she probably experienced because of her health. You wonder what treatments would be available for her if she got sick today. But most of all you feel privileged to be on the receiving end of whatever it is she tells you.

She ends every email by wishing and hoping you have better health coming and you just know how genuinely she means it. But she doesn’t need or expect positive health updates from you for the sake of making her feel better about what’s happening to you. She is one of the few people in your life who you don’t need to perform for.

Your grandma is still your grandma but now she is also your friend.

When your grandparents are in the process of moving out of the house they’ve been in for forty years, a very involved process because in your grandma’s own words it would make for a good episode of hoarders, you get an email from your grandma about her childhood doll. It’s falling apart but it’s really special to her and a mother of three boys, she wants you to have it. It’s important to her that this doll be loved. You promise to love it.

Then one night at 10:30pm your dad asks if you’re still up and if he can call you. Your grandma has had a really tough year, in and out of the hospital. And your heart starts pounding because it already knows what your dad is going to say.

She was proper and quirky and practical and stoic and thrifty and particular about a lot of things. And she was a gem. A hidden gem.

I am proud of the ways I am like her, my grandma-isms. And I am grateful that my illness allowed me to get to know her and appreciate her in a way that I wouldn’t have otherwise. And even though I haven’t even been an aunt for six months yet, I’ve already sent my nephew cards for his first Valentine’s Day and first Easter. And I plan to never stop.

I will miss you grandma. I will think of you every time I watch curling and every time we dry our clothes outside on the rack you picked up for us at the end of someone’s driveway 35 years ago. I will remember you whenever I see a cuckoo clock or a singing Christmas tree or an owl anything, and every time I eat a marion berry…which may be never again because I’m not even sure they exist anywhere but your backyard. I will smile every time I go to my sister’s house and see your old dining room table with the five chairs, five not six, because why buy a sixth chair when you’re only a family of five? I will love your doll always.

I love you, grandma. You were a kindred spirit.

Thank you for being my friend.

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