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. 

Words

It was a conversation that was never meant to take place. An innocent phrase, spoken by a doctor I had never met before that ended up going somewhere neither of us had expected. A simple problem, made complicated by genetics, and headaches, and ICL (of course), leading to more complicated solutions, and then an easy back-and-forth.

An off-hand remark about some side-effect that the doctor didn't want me to suffer from "when I'm fifty" and my casual response, "Like I'll get to see fifty."

*dead silence*

"I...uh.... I wasn't aware that the prognosis was that bad.... um.... wait, how much of this conversation have you had with your doctors already?"

Shit. 

So, here's the deal. Every time I try to have this conversation with my top three doctors (ID, immunology, GP) I get the "hit by the bus" story. You know, I ask them if this is going to kill me. And they reply, Oh, they don't know, I could get hit by a bus next week. Which is like, the least informative thing anyone can possibly ever say. 

Now I've got to limp through an explanation (to someone who has no idea what ICL is) of what I do and don't understand about ICL, about my prognosis, about AIDS, and how ICL is not AIDS because I don't have HIV, but low CD4 counts are not awesome things, about how my care has changed in the last year, and the different conversations I've actually, actually had with people, all while the doctor is tearing up in front of me.

Then she turns white and drops the p-bomb, murmuring, "So, I guess we would consider this a palliative care decision then?"

Shit. Shit again. 

This was supposed to be a conversation about a boring specialist issue that was affecting my life, not the first time ever that end of life care decides to rear its head, and with a doctor who isn't one of my core doctors who I've never even met before. 

For the sake of some side effects I might suffer twenty years in the future. We're not even talking imminent death, here! 

See, docs? This is what happens when you use the bus story instead of having a numbers conversation with your life-threatening illness patients. 

In the end we decided to leave the conversation for a month so she could talk to my other doctors, and so I could talk to my other doctors, and so far it hasn't really gone anywhere yet, except that I've been put on more antibiotics and my CD4 is lower. 

And I've started reading PubMed studies and whipping out a calculator and grouping up study participants to match ICL patients that look clinically like me and seeing what their survival rates were so I can get some number answers so that I'll be better prepared the next time someone makes an off-the-cuff remark and I make a flippant one back, so that I can save us all a really long and painful conversation.

Words. Just words. Just stupid, stupid words. 

The Thing They Forget to Tell You

Something they forget to tell you in Serious Illness School is that it isn't all appointments and pharmacy trips and giving yourself needles at home when you'd rather be drinking tea. 

Sometimes it is doing really scary shit, and listening to hard metal at ten o'clock at night with both headphones in and the volume up as loud as it can go, trying to blow the memories out of your brain. Sometimes it's being surrounded by paperwork, pens, and voicemails, and being totally, utterly alone. Sometimes it's family and friends who absolutely cannot understand what you are going through because they weren't in that bed, they weren't on that floor, they didn't feel what you did and know what you knew and experienced what you experienced or saw what you saw. 

Sometimes it's going to every single appointment on your own, because someone else has to work. Sometimes it's making phone calls on your own. Sometimes it's dealing with someone else's ego, or someone else's limitations, or someone else's issues, when you are trying desperately to navigate a system and a serious medical issue of your own. 

Sometimes it's coming to terms with your own limitations, your own ego, your own issues, your own self that impedes the process. 

Sometimes it is just never easy.

Some things in life exist and tell us how strong we really are. Some things in life exist and tell us exactly how much it takes to break us into tiny little weeping pieces on the floor. Some things in life wear away everything we are and reduce us to a core of unbreakable stone, gradually worn away by the constant rain. 

Waiting for Spring

This was my first full winter with ICL, and I think the isolation really got to me. There were entire weeks this winter where the only adult I saw was my husband, where the only people I talked to other than my husband and kids were doctors, nurses, and home health care workers. Literally every single conversation I had with a living being not related to me revolved around health care.

It was extremely depressing, incredibly annoying, and very desperation-inducing. My pharmacist is now unfortunately aware of the intimate details of my struggle to provide unburnt French toast for my twins on the morning of the third Monday of January, and my local ID's receptionist understands in great detail the intricacies of elementary school bus drop-off for my son on cold winter afternoons.

Coming back to the world after weeks of being too sick to be in it sucks. There's always this feeling of a planet that moves at a different speed than you do. Always a fear that everyone has packed up and left while you were away, leaving you behind in the dust to start from scratch. Not everyone understands that you'll leave the world for a month (or two or three) and then want to come back like nothing ever happened.

But it's almost springtime now!

Spring means the isolation is almost over. Spring means being able to go outside, being able to meet friends in the clean, warm air where there isn't any chance of spreading or catching disease, being able to meet in a public place without coming home sick yet again. Spring means the end of flu season, RSV season, rotavirus season, gastro-enteritis season, H3N2 season, strep season, its-going-around-the-school season, cough-and-you'll-catch-it-season, community-acquired pneumonia season, respiratory infection of unknown origin season, and cold season. Spring!

Spring means hope again. A normal life, at least for a while. A walk outside with the twins. A breath of fresh air. A trip to the park. Safety. Peace. A place to sit without a ceiling. A chance to recover before dealing with the madness of winter again.

Hey there! Are you like me?

Why am I here?

I'm looking for you, if you have the same medical condition I do.

Do you have Idiopathic CD4 lymphocytopenia?

I do too!

I've never met anyone who has the same strange lack of T cells that I do. Which isn't really all that surprising, given that ICL is pretty rare.

But maybe you have it!

If you do, leave a comment below. We can chat! It would be really cool to talk to someone else who has the same thing that I do.