The Gift of Blood

We dragged a patchwork blanket onto the front lawn and had a “read under a tree” date. Ever since she was little my daughter has loved to read under trees, and since being inside is getting a little old after two months of quarantine, this was a perfect afternoon activity.

We read a chapter of Peter Pan out loud (so good! If you have never read it you are seriously missing out) and then settled in to our own individual books for a bit of quiet. She opened a favourite comic book and I returned to Fearfully and Wonderfully: the Marvel of Bearing God’s Image. Every chapter gives me so much to think about, it’s taking a while.

This day the chapter was about blood.

Blood is something I am well acquainted with as a diabetic. Until a few months ago (when I got new technology) I would prick my fingers up to 10 times a day to test the glucose in my blood. The sight and taste of my own blood is familiar and reassuring. It’s part of me and interacting with it is no different than washing my face or brushing my hair.

Diabetics everywhere rejoiced when a recent emoji update included a syringe and a bright red blood drop. Finally one of the biggest parts of our daily routine was represented in this new language on our phones.

When my sugar is high my blood feels thick and poisonous. I ache all over. My movements are slow and exhausting. I know from reading about diabetes that when my sugar is high my blood can become acidic. I know from experience that if it gets high enough it makes my kidneys hurt.

All of this makes me appreciate the blood that flows through me, keeps me alive, and warns me when things are wrong.

When I underwent plasmapharesis to stabilize my Myasthenia Gravis before surgery I saw my blood in a new way. With tubes in each elbow I watched dark red blood come out one elbow, enter a large loud machine, and return to my body through the other elbow. Large glass bottles, filled with plasma the colour of champagne, hung at the end of my bed and were quickly drained as they were added to the mixture going back into me. When I got up after three hours I’d see the bag of my old plasma hanging above the head of the hospital bed. Cloudy, like homemade apple juice with particles still in.

I hated that process more than anything in my life and it made me appreciate my kidneys and the way my body cares for my blood on a daily basis.

As I lay reading in the sun on the lawn I came to the middle of the chapter where Dr. Brand starts to write about transfusions.

He explained how transfusions work. He explained how vaccinations and inoculations work. That they take the “blood of an overcomer” and introduce it to a sick body to lend it the strength it needs to fight infection.

As I lay in the sun I was very aware of my infusion kit lying beside me, of the needles taped to my bare skin where my shirt had risen up, of the antibodies pumping slowly into me. Other people’s blood, processed and refined, mixing with mine. Lending me the strength to live.

I am so grateful for those who willingly give their blood for people like me. They don’t know the stories of everyone who may benefit from their gift but they recognize the powerful potential of their blood, not just for themselves but for others. And they give freely.

Amazing.

Myasthenia metaphors – a rope bridge

Imagine one of those rope bridges you always see in cartoons and movies.

You know those ones with parallel ropes suspended across a ravine with wooden slats creating a solid path to walk on.

Except that it’s not so solid.

Boards fall out unexpectedly and randomly as you try to walk across.

Sometimes 4 or 5 boards fail consecutively and you just manage to leap across the gap.

Sometimes it’s an almost predictable pattern of every other board. Good, bad, good, bad…

Sometimes you don’t hit a bad board in so long that you fall into complacency, figuring you’ve passed the rotten spots. It looks like the problematic parts are in the past.

Then you crash through a hold big enough to swallow you up.

You’ve got to keep vigilant. Maintain that low level of anxiety that keeps you cautious, measured, tentative.

That’s what it’s like living in a body with chronic illness.

Don’t overcommit. Make sure you always have a backup plan, an escape route. Try to get others to realize you’re not as reliable as they might like you to be. Give yourself wide margins. Always protect yourself.

But I believe it’s important to keep going.

Keep trying to move forward.

Identify the triggers that cause the boards to drop out of your bridge and then avoid those things if you can.

• My main triggers are heat, stress, illness, & injury. (For example, if I fall and scrape my knee I’ll struggle to move for several days because as my immune system kicks in to heal the small scrape it also tries to shut down all my voluntary muscles.)

Find assistive devices and alternative routines so that you can get past those gaps. When your body fails, find something else.

• For me this means using my walker more, having my husband bring dinner home rather than standing to cook, and generally ignoring housekeeping. Sometimes I have to bow out of plans with friends entirely but other times I can still participate with some modifications (I lay on the floor and wear comfy clothes or pyjamas).

Be kind to yourself. Accept yourself as you are instead wishing for who you could/should be.

• This is one I’m still working on. It helps to remind myself that we are human beings, not human doings, and our worth is not dependent on our capabilities.

Slow down. Be careful. Keep going.

No one wants to see a photo of my lying around in my pyjamas or the very messy state of my house right now so here’s a photo where you can see my cane and my subcutaneous immunoglobulin infusion pump hanging off my side as I’m out running errands. They may not be fashionable accessories but they sure are valuable!

Unpopular opinion

This mural greets me every time I enter the hospital from the elevators.

There are several hospitals in Ottawa and I’ve used almost all of them. I’ve used them enough that I even have a favourite.

The Riverside hospital is the first one I came to when I moved here because it houses the diabetes and endocrinology clinic. Its also the hospital where I spent many hours in the medical day care unit, over the year and a half that I received monthly IVIG infusions, chatting with the nurses and other patients.

The Riverside is smaller than the others, it requires a quicker, more direct bus ride to get there, and it has a little coffee shop on the main floor that makes a great BLT sandwich.

At least it did until four days ago.

I arrived this morning and saw that the coffee shop has closed down. Taped to its doors were signs advertising the cafeteria.

I’ve been coming here almost 15 years and never even knew there was a cafeteria. It’s on the lower level. I never even knew there was a lower level accessible to the public.

Of course I immediately went to check it out. And it felt like every other hospital cafeteria in that strange but familiar way. Posters of health care workers and patients smiling at each other. Cracked vinyl seats on the chairs. Tables place haphazardly around the room. Friendly staff working at the grill and the cashier’s booth. And hospital staff everywhere – buying coffee, debating getting soup, catching up with coworkers, comparing their schedules for the week, teasing each other and rushing off to their next thing.

Here’s my unpopular opinion – I love hospitals.

I love them in a general way- they feel welcoming and safe – but specifically I love catching glimpses of the back side of things.

It’s the same with restaurants. You can go to a restaurant repeatedly but you only ever get the same customer experience unless you get to go behind the scenes. Walk into the kitchen and it’s a whole other place. It’s loud and hot and wild and fun.

Hospitals have their own back side. Typically I get the up front customer experience as a patient. But I love those glimpses into the lives of the people running the place. I’d love to work in a hospital some day to be part of that.

It turns out that the cafeteria also makes great BLT sandwiches.

Bring on the drugs

I’m not asserting that I have optimal health -I’m under no illusions – I just resent that the expected response to “which way are you headed?” is that I should be trying to leave medical interventions behind.

Back in the fall I had an intense burst of chiropractic care where I was seeing my Dr. a couple times a week for 6 weeks.

(Chiropractic care and massage therapy are an important part of the treatments that keep me moving and managing my pain and I’m very thankful that I have great care providers within walking distance of my house.)

Whenever I’d enter the exam room though, I’d see this poster and, I’ve gotta say, I don’t love it.

It summarizes an underlying tone that I often hear from people in the extended health care field. There’s this idea that medications and intrusive treatment are problematic. You see in this poster that they list taking medications and surgical intervention under poor health.

They equate taking multiple medications with poor quality of life.

For me taking multiple medications increases my quality of life.

I love my needles and my infusions and all my pills. They gave me my life back. I understand that they may have side effects and I may have consequences down the road, but I feel no need to try to wean myself off them.

I’ve written before about healthy privilege and I think this is one way that it manifests itself – good health is seen as free from medical interventions so if you require those interventions you’re perceived as not doing all that you can to get healthy.

The reality is that I work harder than the average person to be as healthy as I am. For people with healthy privilege their work involves exercise, diet, meditation, etc. Those elements are also part of my routines, but I require more than that. And there should be no shame associated with needing a little more help.

Bring on the drugs and the needles and the surgeries. They’re essential to have in my arsenal when fighting for good health.

More fan mail

When I found this at the thrift store I had to buy it. It didn’t cost much but it’s valuable to me.

A couple weeks ago I shared my reply from Justin Trudeau and said that I had more mail to tell you about. Since today is the anniversary of my diabetes diagnosis it’s the perfect time to share this email I sent in January:

Hi Piers, 

I’ve been meaning to write to you for almost 19 years because I want to tell you what a major impact you have had on my life (and it’s probably not in the way you might think.)

I read Killobyte when I was 16 years old and quite enjoyed it.  It was exciting and a bit scary but what I really loved were the characters.  They felt very real and because of that they were memorable.  

A few months later I started feeling tired and kind of sick and it reminded me of the woman from your book.  I went back to the library, found Killobyte and the chapter I needed and re-read it.  Baal describes what it felt like when she was diagnosed with diabetes as a child.  She describes her symptoms in a very accurate and vivid way and I recognized what her character was going through because I was feeling the same way.  I spent my next few lunch hours in the school library researching, first in encyclopedias and then in a set of medical encyclopedias.  

Once I had enough information I went to my mother and told her I thought I had Type 1 Diabetes.  She took me to the doctor who ran a quick test and confirmed my self-diagnosis. 

Because I caught my symptoms so early I never went into diabetic ketoacidosis and was able to be treated as an outpatient over the following week rather than having to be admitted.  They put me on insulin, taught me to count carbohydrates and I was able to carry on with my normal teenage life.  

If I hadn’t caught my own symptoms, I likely would have been diagnosed eventually but much damage would have been done in the process.  I have been diabetic for almost 19 years now (my anniversary is coming up next month) and I still have no complications.  

I am profoundly grateful to you that you portrayed this illness with such accuracy and detail.  So many times I see diabetes in the media shrouded in myths and misinformation.  The fact that you properly researched the facts, and the way you described them experientially, through a child’s gaze, allowed me to recognize what was going on inside my own body and get help.  

Thank you so much. 

Jasmine

About an hour later my phone dinged to let me know I got an email. I opened it up to find this:

Thank you for your note. We have printed it for Piers Anthony and he gave us
the following answer for you:

Wow! I am glad my novel helped you catch it early. I was working with a lady doctor who specialized in Juvenile Diabetes, so managed to get it right. I had been diagnosed with Type 2 Diabetes twenty years before, but she reviewed my figures and said the more modern information indicated that I wasn’t diabetic. So the same novel that identified your diabetes took me off diabetes. Later I finally found the problem: low thyroid. I went on Levothyroxin pills, and they alleviated both my fatigue and my mild depression.

I sent the doctor a copy of “Killobyte” when it was published, and she was reading it on a plane, and then forgot it when she deplaned, to her chagrin. Then she heard from a flight attendant who had come across it and found her address in it, but he delayed returning it until he could finish reading it himself.

So there are stories connected to this novel. Yours becomes one of them. I hope you enjoy the company.

I wish you the best of life.

Piers Anthony

Im so glad I finally sent the email. He’s in his 80s now and his website was designed over 20 years ago but he still updates it regularly and interacts with his fans often. He seems like a sweet guy.

4

I have friends that love their birthdays – they look forward to it, talk about it and plan celebrations. I feel much more neutral about mine.

But I have my own significant dates that I celebrate. Rather than marking the day I was born I mark the dates that I didn’t die. My diagnosis anniversaries.

For years I silently observed the anniversary of my diabetes diagnosis every year. All day I’d remember my time in the hospital. I’d remember learning to count carbs and take shots and test my blood. I’d remember sitting in a small room waiting for nurses to bring me my scheduled snacks of crackers, cheese, and diet ginger ale. My mom and I were supposed to watch educational videos where puppets learned about diabetes but instead we watched Disney’s Tarzan. I’d remember coming back to school and having to explain it all to my friends.

As I sat with these memories each year I never knew quite how I felt. Sad but also relieved. Lucky to live in a time and place where insulin is readily available but also a bit robbed of the ease of a normal life.

Then one year I decided that I was going to change my perspective. I decided that my anniversary was a day to celebrate. Like a birthday, it was a date to mark the psssage of another year. But with more significance than a birthday because it meant I had survived another year – and not by accident. I work hard every day to stay alive and to stay healthy. I’m kept alive artificially through medicine, the health care system and a tonne of effort on my own part. And I feel like that’s worth celebrating.

So every year I treat myself on that day. I buy myself a gift that I wouldn’t otherwise spend money on, or I take the day off work and do whatever I want – thrift shop, sit in cafes, read, go to the art gallery… It’s like a private birthday where I get to do whatever I want.

Four years ago I gained another day to celebrate. February 4 is the day a doctor first said the words myasthenia gravis while looking at me.

Diabetes feels like a mainly private disease – the calculations happen inside my head and it’s rare that any symptoms are visible – so I usually mark it on my own. But myasthenia is a different beast. It’s wild and visible and disruptive and it involves a lot more people in its management. And my celebrations are similar – usually ordering in pizza and hanging out with friends (including 5 loud children).

I can’t find the reference now but I read once that before modern treatments were available for myasthenia gravis the life expectancy was 3 to 4 years from the date of onset. (Now it’s a normal life expectancy and rather than killing all of us only 3-4% of us who have the disease will die from it.) So this year feels significant. Four years.

I’ve been thinking a lot about funerals and documenting my needs in case I’m ever unable to advocate for myself, and maybe I’ll write about that another time, but right now I’m looking forward to going out and having a proper little party to celebrate the fact that I’m here and that I can.

Happy anti-death day to me.

Healing

The bench in my office where people sit when I host them for meetings. It’s also where I can work while laying down on days when my back is bad.

Instead of sitting down for the chat she was there for, she had placed her hand on the back of my neck and was praying. Praying for healing.

This was a first meeting to talk about how our workplaces might benefit each other and although I didn’t expect the conversation to go like this, I wasn’t all that surprised. This wasn’t the first spontaneous prayer service I’d had in a professional setting.

If you meet me for the first time, chances are that as part of the introductions I’ll introduce my illness. It’s visible enough (through my sunglasses, cane, walker, knee braces, medications etc.) that sometimes I just like to have it out in the open right from the start. That’s how this encounter started.

I had met her in the lobby and by the time we made it to my office she was feeling the need for my healing.

While I appreciate her intentions and I recognize that her prayer came from a heart filled with love, I usually leave these interactions feeling like their prayers are misplaced.

Many Christians, on hearing of my illnesses (it happens with diabetes too, not just MG) have an instinctual reaction to pray it away. I pray too. Often. But that’s not what I ask for.

I pray that I will live well, with and despite my illnesses. I pray that I will be patient when my body slows me down. That I will be calm when my pain makes me cranky. That I will still be a helpful partner to my husband, and a good mother to my daughter. That I will learn from my limitations and find opportunities to connect with others, maybe even through my illness.

I don’t view faith as an escape route out of a tough situation. My faith helps me thrive in my situation.

Limited Edition

If you have young kids you’re probably familiar with the current trend in toys which is to collect small figures that are part of a series. Shopkins, Pikmi Pops, Mini Hatchimals, Surprizimals, Mini Mixi Qs, etc.

They often come in blind bags, or eggs, or some other concealing packaging so you don’t know what you’re going to get, and each one comes with a printed list of all the characters in the set.

Each character is coded as either common, rare, ultra rare, or – the most prized and coveted – limited edition. (Or some variation of this ranking system.) Much discussion goes on about how many toys one owns in each of these categories and status is ascribed.

None of this actually matters except that you need this context to understand the world I live in as the mother of an almost 7 year old.

. . .

Last week my daughter and I were shopping and as we walked across the parking lot she said to me “it’s cool to have a Mum who uses a cane. Not many other mums use canes. And it’s cool to have a Mum who takes needles all the time. It’s kind of rare.”

I explained that diabetes is a common disease but that Myasthenia Gravis is a rare disease. And then she said “so having both is, like, ultra rare…. actually it’s like you’re Limited Edition! Most mums are just common or rare so I’m lucky!”

I think I’m the lucky one. To have someone who sees the things I consider deficits as assets instead is rare gift.

As we were driving home from church one day, she asked if she could take a picture of me. No reason, she just wanted one. I almost said no because I had my eye patch on and was feeling super limp. But then I realized that she doesn’t see my bad days. She just sees her mum. So I said yes.

May

I realize it’s been a month since I’ve written. I’ve thought about writing many times but haven’t really had much to say. It’s been a busy month, with work changes and birthdays to celebrate and visitors from out of town. And I’ve been feeling the busyness. My MG has been annoying and then my insulin pump broke briefly last week so let’s just say I’m not feeling awesome. So I haven’t written much.

But I did join Instagram so if you’re there, come find me. (User name stressed_out_hippo).

And I’ve been bingeing Brooklyn 99. Sooo funny and easy to consume. And last night I watched the movie The Good Catholic and loved 99% of it. I wish there were more movies that portrayed good strong platonic male/female friendships without turning things romantic. If you know any, let me know.

So that’s what I’ve been up to.

Nostalgia

(We spent my diagnosis anniversary visiting the National Gallery to see the Canadian Biennial.)

I’ve been using an insulin pump for over 16 years but every once in a while I like to take a break from my pump and go back to my old-school habits from the early days after my diagnosis. Going analog in my insulin delivery forces me to examine my habits and tighten up my control. It gives me discipline.

It also gives me nostalgia. Every uncapped needle and manual injection flashes me back to high school. I feel strong, smart and powerful. I feel the control I have over my disease, over my body. I own this and it feels good.

My husband commented the other night, as he caught a whiff, that he likes the smell of alcohol swabs and we realized that for him it’s the smell of a brand new relationship. We started dating as I was going through my diagnosis. He listened to me vent, he helped me with injections, he came to the hospital with me for education sessions, and supported me in a million other ways.

We always take note of our anniversary in February but don’t really celebrate anymore. Our wedding anniversary takes precedence now over our date-iversary. But I always celebrate my anniversary. My diagnosis day. My private birthday. My anti-death day. The beginning of my bonus life.

Each year I celebrate that I have worked hard to keep myself alive and relatively healthy for another year. I buy myself a gift, or I take the day off work. I walk around the art gallery or I eat whatever junk I feel like. I give myself permission to do and to feel whatever I want. And I remember. I remember the taste of the diet ginger ale that I drank while sitting in the hospital watching Disney vhs tapes with my mom instead of the educational videos the nurse had left for us. I remember stopping to buy a purse on the way home because I now had to carry a glucometer, insulin, and of course, jellybeans. I remember my siblings coming to classes where they injected dolls with coloured water and squealed at the oddness of it all. I remember being sad, then angry, and then okay.

It may be unusual but alcohol swabs, orange capped syringes, and diet ginger ale (much like Mmmbop) are part of my teen years and so they’ll always hold a place in my heart.