As I go through my usual days now, I’m often met with the idea of “I miss when I used to…” and fill in the blanks. Like, I miss that I used to be able to blow-dry my hair easily; and now, I rarely do, because the nerve pain in my scalp makes it way too uncomfortable. There are a lot of things that being sick changes in your life, and most of them you adapt to, without even realizing it; they just become part of the new you. And then, suddenly, one day, it creeps up on you, that your whole life is different.
That’s what being chronically ill is about. There are, literally, countless changes to my life. Some of them are good: I get to be home with Collin. Some of them suck: I lost connection with a career I loved. But, the important part is being able to accept and work around the changes as they come; because if one thing is for sure about chronic illness, is that it doesn’t ever stay the same.
Chiari, for example, doesn’t ever stop changing or evolving. Something people don’t generally recognize is that all the time that I spent undiagnosed, was time that my cerebellum was sitting outside my skull. That’s time that my spine and the back of my brain were being crushed by the pressure of being squeezed out of the teensy-weensy space of the hole in the back of my skull. That causes permanent nerve damage, the effects of which we can already see, and which will only continue to develop over the rest of my life.
Plus, my neck muscles were sliced through, all the way, and spread apart like a curtain, at the base of my head, twice. This means that my head, which is very heavy (didn’t we all learn, in the 90’s what the human head weighs?),
…is often unsupportable by those, severely weakened, muscles. If I sleep wrong, if I’m tired; or, even if I just had a rough day, I have to wear a hard cervical collar, for the rest of my life. It’s akin to having had a broken neck. These aren’t minor things. These aren’t, “oh, you had your surgeries, so you are better, now right?” things.
I was looking over the last few posts and it occurred to me that I was missing the point of what I’d wanted to do with my blog. One of the goals was that I wanted to educate what it’s like living with chronic illness. At first, it was about being sick, and how it hurt to be bullied because of it, and with it. But then, it got to be about nonsense. I was hurt by some mean girls. So what? It’s like wild kingdom, right? The different girl might as well be the gazelle that gets picked off by the whispering, back-biting girl lions. But, who cares? I didn’t die. I hobbled off and lived to say, “fuck you; you didn’t kill me.” And, it bugged the shit out of the lions. So, enough said. Leave it be. I missed my purpose by letting them bother me more, and letting them continue to pick at the gazelle, who wasn’t a carcass.
So, I’m going back to my purposes: educating and looking into life of chronic illness! Last night, while I was up, at 2 am, sitting on the pot, for FORTY minutes, I got to thinking about this list:
Top Ten Things I Miss About Healthy Rachel
Being Able to Pee
That had to be number one, right? After lots of testing, and still more to come, we are pretty sure that my pee issues are nerve-damage related. By the way, I’m very much looking forward to a scope going up my bladder; I hear it’s really fun. Is it? I love my urologist because he’s the perfect mix of good doctor and silly goose. I like the silly goose part. The last time I was there, he said to me,
“Imagine your bladder is like a little child; it’s having baby tantrums.”
Then, he balled up his fists and made waah-waah faces. So, the bundle of nerves at the base of the cerebellum control a lot, including bladder function. It could be worse; I could be incontinent. Instead, despite having to go really, really badly sometimes, it can take me 30-40 minutes to convince my muscles to get in line and let it happen. You’ve never seen anything until you’ve seen a grown woman jumping up and down, on the toilet, trying to convince her body to release the pee!
Grr. Hulk. No. Cry. No. Happy.
I can’t always easily regulate my emotions anymore. Symptoms associated with chronic illness include depression, or mood swings. It’s pretty normal to be depressed about your whole life changing, without your permission. But, more than that, when someone physically alters a portion of your brain, that comes with unusual side effects too. Oh, and PTSD. I get severe anxiety seeing doctors now, and meeting new ones, for example. It’s taken me a long time to work out, and work with these changes. I love my therapist. She’s the bee’s knees, and without her, I don’t know how I’d have figured out a lot of things, and made some pretty sweeping changes to my life.
People don’t totally understand things like this; and it’s very difficult for people not close to you to understand; and it’s easy for them to rush to judgment. Oh, she’s crazy. Oh, she must need help. What do they mean by “help,” when they say that, anyway? Fuck those kinds of people, frankly. If you’re the kind of person who tells a brain surgery patient that she’s crazy because she’s having a bad day dealing with her ongoing health issues, which include mental status changes, then you are probably the one who needs help; and you are a meanie.
Let's say this as CLEARLY AS POSSIBLE: Brain surgery is a type of TRAUMATIC BRAIN INJURY. This is not just an appendectomy; it takes YEARS to recover from. I’ve had two, in a single year. If you met a soldier, hit by an IED, and he was a little teary-eyed one day, and then a little bit easily frustrated the next, would you push him around and say, “ugh, he needs help!” Umm, no. Because he has a traumatic brain injury. Same diff, folks. Same diff. Let’s get that right on the table, and stop being nasty to people with traumatic brain injuries; let’s recognize that it FUCKS with your mind.
Well, I still sneeze. Everyone sneezes. Imagine if someone claimed never having sneezed. It sounds weird; but, my grandma claims that she’s never, once in her life, had a single headache. How that’s possible with having had five children I’ll never know! I know that some ladies pee when they sneeze, especially after they’ve had children; maybe I should look into that and then I could pee more easily. But, sneezing is a Valsalva Maneuver. Normal people use a Valsalva Maneuver to equalize pressure in their ears. People with intracranial pressure issues can’t perform Valsalva Maneuvers without extreme pain. When I sneeze, I don’t get that, “oooh, that felt good,” sensation that everyone else gets. I get that, “shit, how did I survive that,” feeling. So, my sneezes sound like this: “aa-choo-aaaaaaoooooowww!”
This one shouldn’t bother me, so much. I guess a lot of middle-aged women don’t bend at the waist, especially based on the obesity rate in America! But, I used to be fully capable of bending. I still am, but it hurts. Blood and cerebral spinal fluid flows around a Chiarian’s brain and skull a little differently than around in a normal head; so, if I bend down, “timberrrrrr!”
Not Knowing About Passing Out
Did you ever wish you didn’t know something? There’s lots of things I wish I didn’t know, or wish I could unsee
I wish I didn’t know what it felt like to pass out. It happens occasionally, because of Chiari. It’s one of those things. It’s better to go along, blissfully unware, I think. It’s not the passing out that’s the bad part, really; it’s the waking up, and seeing that you scared the people around you.
Speaking of Knowledge – Mortality
I think everyone has a vague sense of their own mortality. We all know we’ll die. We all know that we won’t live forever. But, there’s a big chasm between that knowledge, and the sense of clarity you get when you are being wheeled back for someone to touch your brain. The first time, I wasn’t afraid, not until two minutes beforehand, when suddenly it occurred to me that how would Bryon really know that I loved him the way I meant to express it. What if I died? I kept shouting to him, all the way down the hall, until they knocked me out, right there, because I was hysterical. There’s a kind of terror in that feeling that can’t be expressed in words, a horror in knowing not that you might die, but that there’s no true way to make sure your loved ones know you love them. We use all that greeting card bullshit to say that telling them, and showing them works; but, when you are there, facing it for real, you suddenly realize that your heart is deeper and more full than you’d ever known. There’s no way to ever fully express what’s in it; and that’s the most horrifying part of mortality.
Lifting Anything Heavier than Homer
Technically, I’m not supposed to lift anything heavier than five pounds still; Homer weighs close to fifteen pounds. Some Chiari patients take the “restriction” idea way too far, and believe they should treat their body as if it's made of glass. Surrounded by pillows. In an acrylic, protective case. On the no-touch shelf. I think it’s safe to say that some Chiarians are a little too skittish. Sure, I can’t ride roller coasters, or go to the chiropractor, mostly because I could become internally decapitated far more easily than you; but the thing that bothers me right now is that I may not ever be able to lift weights again. Any strain, even just a big bowel movement, can cause my cerebellum to herniate back out of my skull. Because I have a titanium plate, I can strain a liiiittle more than some others, but not much. I love weightlifting; I love it so much I wasn’t even a little embarrassed the last time I got a PR at the gym, and a little fart escaped. Them’s the breaks when you are working hard. Okay. I was a little embarrassed. But we all fart, right?
I want to wake up tomorrow, and have it all be back. I know I should just feel lucky that it’s hardly noticeable; but, I don’t feel lucky. I feel mad. In most cases, my hair just looks thinner than it normally would; but, if I pull it up in a bun, there’s the bald spot, or the scar. I want my hair. I want it now. To claim that hair isn’t an integral part of our identity is to lie. Look at all the cancer patients who shave their heads defiantly in advance of chemo. Shannen Doherty just made the news for doing it. There’s nothing like looking at yourself in the mirror, and seeing such a drastic change that you didn’t perpetrate yourself.
I still sleep. But, I am still on a lot of sedating meds, so the sleep I get isn’t always restful and restorative. I miss that. I miss waking up refreshed, instead of still exhausted, because I’m still a little sedated. You know how when you wake up, you stretch, yawn, and feel ready for the day? I wake up, stretch, yawn, and want to sleep for another twelve hours. Literally.
Not Knowing that Vile People Exist
I’m sure you think this is going back to bully, icky people. It could, but it isn’t. I have been working on a side project for a long time, a book. So, I spend a lot of time observing online Chiari support groups. I wish I didn’t know what happened in online groups, and how bad they are, in general. I’ve seen death threats, and a man driven to suicide because of online taunts. I’ve seen women tease a mentally ill man into running away from home, only to be found by police, weeks later, then claim innocence. I’ve seen sick children lose access to mere pennies of fundraising monies because people harass their GoFundMe site with enough comments to shut them down. I’ve seen brutality that would make your head spin. It’s enough to make you question your faith in humanity. I wish I didn’t know this. I wish I could pretend that I believe, fundamentally, that all people are good; but, it’s too late for that now. I have to know that there are some bad people out there. Truly bad. And, the worst part of all, is they think they are good people; or, they pretend they are good people, especially to themselves.
Being sick is not like a hat that I can take off. It’s a part of who I am now, like being a mom, or being a wife. But, it’s also not something that I like to make the center of my day. I try to arrange my life so it’s not a priority, so it doesn’t interfere. Usually, it’s not a “thing;” but sometimes it pops up and is a pain in the ass. If you spend time around me, I’m not talking about Chiari, ever, unless I’m asked. I’m not one of those people who never shuts up about it. Ugh. The horror. Actually, I think it might be worse to be one of those people who never shuts up about her kid.
I miss having just one doctor. Or no doctors at all, really. Remember when you went to the doctor because you had a sore throat, or a fever? Or, rode those things out? I have a dozen. In LA, I have over a dozen, that I need to see on a regular basis to manage my condition. There’s MRIs to update, images to review, bloodwork to check, medications to manage. It’s a constant battle of appointments and calendars! Think it through, and count how many doctors you have. I bet it’s less than a dozen.