Ode to Spring

It's finally here!!!

I've been waiting for this! It's springtime! It's amazing, it's beautiful, it's freedom!

This is, quite honestly, the first time I've ever felt like this during spring. Like the whole wide world has opened up to me, like I'm throwing off the bonds of everything. I have a lightness in my step, and new energy in my heart. I'm no longer trapped inside my house, or trapped by the snow, or trapped by the legions of coughing/sneezing/contagious people roaming all of the indoor shopping areas.

Now when I want to escape I can just throw on a pair of shoes and a hat, chuck the twins in a stroller, and go. We can go to the park, we can go to the store, go grocery shopping, go grab a coffee, go in our own backyard, or just go around the block.

I'm also starting to get fit again (just in time for surgery! Ha ha! Sigh.). But still, it's nice. I'm making an effort to work out again - just walking a couple of kilometres every day, doing my yoga, playing with the kids. It's been a long time.... a really, really long time.... since I've ever had the spare energy to want to or even think of "working out". It's really incredible to me how different my life is right now, compared to how my life was a few short months ago.

It's the weather, it's the new medication, it's the new vitamins, it's the sunlight, it's not having to be afraid of going out in public, it's not catching something every time I leave the house, it's being able to leave the house whenever I want, and being able to walk outside for reasons other than visiting a hospital. It's not being sick all of the time, it's being healthy enough to walk up the stairs holding one or two kids and not break a sweat, it's being energetic enough to clean my living room and not want to take a nap afterwards, and still have fuel to go go go and keep going all day.

It's wonderful, it's glorious, it's fantastic.

It's spring and almost summer!!

And I intend on enjoying every single minute.

Lag

Lag is a term for when the time is takes for two internet servers to ping (or contact) each other takes too long. We use it a lot; jet-lag, getting lagged, feeling lagged.

Something has been happening recently in appointments of mine.

My doctor has something really, really important to tell me. It's going to change my life, I can tell. The air changes, solidifies, thickens. The doctor pushes their chair back, moves around the side of the desk, leans forward with their elbows balancing on their knees. They stare at me, dead in the face, taking a deep steading breath. I know something is about to happen, I know they have something to say, and I can tell by the tears balancing in their eyes that I am not going to like it. 

The moment comes. With another deep breath, my doctor reaches out, and speaks a sentence in a tender, compassionate, yet firm voice. I nod, tentatively. 

"Ok," I say. "I see. What does that mean?" My facial expression hasn't changed yet, but my brain has gone numb. Lag. I'm lagging. 

With more of that tender, compassionate, yet firm voice, my doctor speaks more on this very important subject, and I'm hearing only the words. But what I'm seeing is desperation. My doctor's face is growing increasingly desperate behind those steady words, those eyes are boring into mine, pleading with me to understand what they're trying to convey. 'This is bad news, 'those eyes say. 'This is very bad news. You should be crying. What I've seen with this... '

Lag. Lag lag lag. I know it. I know at that exact moment that there is far more tied up here than just the bad news, just a diagnosis, just what I'm hearing on paper. There will be stigma. There will be consequences. There will be a whole host of horrible things that this doctor has experience with - personally - that I can barely wrap my head around right now because I cannot, in this moment grasp any of it. I'm lagged, I'm out. 

I'm like a child who doesn't swim who has just been thrown into the deep end of the pool, but doesn't realize yet that they need to breathe. 

Because whatever that doctor knows, whatever that doctor has seen, whatever they are trying to convey, I cannot understand it yet. I'm not there yet. It's a knowledge gap, it's an experience gap, it's two servers trying to ping each other and the call never connecting. 

I'm lagged. 

Later, when the appointment is over, and I've read a little more, I will cry. The next day, when I meet with another doctor who will explain more clearly the unsaid consequences of this, I will break. A month later, after a seizure and side effects of seizures, a severe neurological response, I will finally, truly, honestly understand some of what that doctor, my doctor, my son's actual doctor, was trying to communicate with her tearful eyes. 

Ping. 

Ping. 

Pong.

The lag abates. 

You can have comprehension without knowledge. You can have knowledge without comprehension. Experience will determine the bridge between the two. 

Summer is here now. The season of true freedom. We will live this summer to the fullest possible. I love the outdoors. 

Floundering

Every now and then I am reminded of all the things I absolutely do not know. 

Which sometimes feels like everything. 

Because the reality is that I don't. 

I don't really know much about medicine; although I've tried really hard to learn about it, the fact is that without actually going to medical school and getting a degree and doing a speciality in immunology there's a real, factual, hard ceiling to the knowledge I'm able to acquire and parse about ICL. I can learn a lot of big, long, Latinate words, but that doesn't mean that I can use them properly. I can search and search and research and read and study, but the that doesn't mean that I have the background or the experience to comprehend. 

It's truly frustrating for me to read most basic levels of information (I use HIV/AIDS stuff, because anything that targets low CD4 counts is usually pretty relevant to ICL), realize that it's not in-depth enough to tell me what I actually need to know, and then get completely lost trying to interpret an article that's actually meant for clinical use. 

It's hard because English is my language, it's actually my field of study, and words are my comfort zone. I feel like, if I can't figure this out I must not be trying hard enough, or studying hard enough, because the knowledge is out there, it's just not really accessible to me. It's not like they do a "Med 101 for Patients" class. 

All it takes is one conversation with one doctor for me to realize just how out at sea I really am. That no matter how much I read, how much I try, how many lectures I watch on Youtube, or how many words or statistics or facts I memorize, I will never understand this. And I'll always be completely dependent on these people I don't even know to decide my life for me. 

That's the rub, right? 

How can I have a real conversation if I don't understand what we're talking about? Otherwise it's just somebody telling me what they want me to do. I can't actually argue my own opinion, my own values, my own priorities. Even worse, if I don't know enough about my own disease, then I can't be my own advocate in my own life. We talked in my appointment about some tests that I had turned down, actually because I had thought, misguidedly, that it was beneficial to turn them down. Except that I was unaware at the time of a significantly increased risk of more serious illnesses, because that wasn't something that I'd been told about or really had understood. There was also disagreement about the potential results of the test, which confused me more. More real knowledge allows me to advocate against that more strenuously. (Test was a lymph node biopsy, by the way. The serious illness is low-CD4 based cancers, like lymphoma. Part of the problem is that most basic level websites don't want to give cancer statistics to their HIV patients, and those aren't commonly known facts.)

The only solution I can think of is increasing medical literacy among patients who want it, like me. I need it, honestly. I have a rare disease that I need to be able to control myself. I need to know my risks so that I can advocate for myself, so that I can live a healthy lifestyle, and so I can make good treatment decisions (and know when to agree and disagree on decisions others make). But also just really clear communication and knowing that I'm trying, really hard. I just don't always understand, and I can't know what I don't know yet.