I came down with meningitis seventeen years ago today. Seventeen years since the start of this headache which I now know will never go away. Seventeen feels like a huge number – nearly half my life – big enough that in that time most of the things that scar us ought to be healed, right?? I would have thought so. Turns out no. Turns out some anniversaries don’t get easier.
It’s also been exactly nine months since I had my occipital nerve stimulator removed which helped me control the chronic pain secondary to the meningitis. An infection had spontaneously developed around one of the wires which connected the device, inside my hip, to the leads that went to the occipital nerves at the base of my skull. After months of an oozing sore in the center of my back (sorry, I realize how disgusting that is!), and several attempts at cutting out the infection, I started getting fevers, and suddenly the entire device had to be removed. Immediately. I didn’t even have time to wean myself from it. It was a tough surgery including six incisions, fifty-two stitches, several days in bed, and a lot of feeling sorry for myself.
With the nerve stimulator, my entire neck felt prickly 24/7, just as if I had a tens unit on the outside of my skin. I had to charge it about once a week by plugging myself into an outlet. If I didn’t, it would run out of juice and quit working until I got myself home. Sometimes RF signals (such as at Disneyworld) could also shut it off. If that happened the pain would worsen within an hour or two. I’d gotten to the point where if I suddenly stopped feeling that stimulation in my neck and scalp, I would begin to panic. I mean, full on panic attack which I would have to breathe through.
When I went under to have the stimulator removed, the hope I clung to was that my dependence was more emotional than physical. Yes, once upon a time ten years earlier the stimulator had redeemed my life completely. I went from full disability and living on the couch to going back to school, getting a job, and becoming an extremely active person. I wouldn’t ever have run marathons or climbed mountains – or published a book! – without the pain relief the stimulator brought. But yet I thought it had become less effective than it was initially. With it, I still had low level pain every day, and I often had considerably bad days. So how much could it have been helping, really? Turns out a lot.
Without the stimulator, the low-level pain occupies a much larger area in my head. Instead of the aching being somewhat contained to my temples and forehead, it’s once again a full band that includes the back of my head and neck. I constantly feel like my skull has been smacked with a bat.
The worse days of pain are worse too. The elevated pain happens far more often, and the ceiling exploded. What I considered a 10/10 headache back then now feels like maybe an 8. I had no recollection that what I now call a 10 is even possible. The first time it happened was the middle of the night about three weeks after surgery, and I’ll never forget the shock and panic brought by feeling so completely paralyzed in my bed. Only then I remembered how bad the pain had been ten years earlier. Or when I was in the intensive care unit with meningitis.
We forget what a specific pain feels like, but the emotions surrounding the pain? That’s what we always remember.
My triggers are much more sensitive without the stimulator. Keeping my head turned to the side for more than a few moments, low blood sugar, dehydration, wheat or red wine, too much sunshine or noise…all of those things could have caused a worse headache/migraine before, but now they are certain to, and much more quickly. Traveling is tough. I haven’t yet been able to balance being away from home and my routine without my head paying the price. I’m coming out of a stretch right now during which I had a migraine at least part of every day for two weeks straight.
Before, had I gotten a hefty dose of endorphins via a long, long run or climb, I would have been guaranteed at least a few days of minimal pain. I once had a conversation with a friend who was struck by lightning and also uses endorphins to control the pain in his feet about how long endorphins lasted before we absolutely had to have more. We both agreed that if we got enough in one go, we could last about ten days. Ten – we came up with the same number!
Now I’m lucky if the endorphins buy me 24 hours. I’m working out more than once a day now, and while that feels a little obsessive, I actually need every bit of it. The training required for a 100 is no longer over the top.
Replacing the stimulator is an option. But I keep remembering that because of the stimulator I had eight surgeries in ten years. Scar tissue which causes issues of its own covers the left side of my back and my neck. I have major qualms about going back down that road, and besides, a second stimulator is not as likely to help as much given how much scar tissue from those wires now covers those nerves. For now I’m going to try other strategies.
Nine months later, I’m still adjusting. I’m still trying to figure out where my limits are, and how I can live within those confines. There have been times in the past few months when I have been pushed so far to my limit, I couldn’t do anything other than what was 100% expected of me. (My apologies to friends I have ghosted, and a big thanks to those who haven’t taken it personally. I do realize how much I have sucked as a friend this year.)
Obviously, it’s depressing to have regressed so much. But there are other feelings, too. Surprising feelings.
Most of all, I feel like a liar and even a fraud. I’ve branded myself as someone who uses endorphins to overcome chronic pain. But what I had been dealing with when I ran my first 100 or climbed Mt. Aconcagua or published my memoir was a fraction of what it could have been. Now I know that. The reality is that I’m not sure what my future holds and if it will look like any of those external accomplishments again.
This is the point when friends say things like, “Of course you will do ____ again!” Or if I do succeed with one of those things, they say something like, “Of course you finished your first ultra without the stimulator!” Both make the pain feel even more invisible. And I feel even lonelier as a result.
Ten years ago, when I had the stimulator first implanted, I had the advantage of extremely low expectations in my life. I was doing great if I kept myself out of hospitals. Now, even though people know theoretically that I am in more pain than I was a year ago, they still expect me to show up to events without ever cancelling or climb 14ers with them and be my happy self.
The truth is I’m putting pressure on myself too. I keep scheduling my time as if nothing has changed.
Accolades about my tenacity don’t help either. Those compliments almost make me feel like I will lose those people’s respect if I am less tough about the pain. And believe me, more days than not I am not tough.
I’m guessing what you are thinking at this point (if you are still reading – thanks!) is that now you are afraid to say anything to me at all because it might make me feel worse. I try to be someone who isn’t sensitive, especially when people are genuinely trying to be kind, but right now I just can’t help it. This is why I’ve been distant on social media and elsewhere, too. I’m sensitive now to memes and other commentary from friends who imply we should all be able to overcome any malady to thrive again. It feels like that opinion makes it less okay when I’m not doing well, and it’s more my fault.
I realize now that times in the past I have probably come across in that exact same way.
The other day I did have a conversation which helped. I was talking to a new friend who doesn’t know much about this part of my life, and she asked if the pain got worse after the stimulator was removed. I said it had and it makes life harder. She said, “But you’re doing it.” Why did that make me feel better but other, similar comments, don’t? I suspect it was the present tense. Saying the same thing in future tense erases the severity of the pain and saying the same thing in past tense renders my struggle invisible. But present tense? I AM doing it reminds me that I am. I literally thought, “Oh yeah, I am.”
Another gift which has made the difference: neighbors who have adopted me. They are the kind of women who deliver homemade chicken noodle soup to your stove during a blizzard so you find it once you’ve walked home from work with your eyelashes frozen half shut. (Who does that?? They do, and I have no idea how I got so lucky.) Words are hard with me right now, but those kinds of actions go a really long way. Especially when I’m single for the first time in my life. Before you go jumping in your car, too, please know that I’m being spoiled by them and other friends plenty!
For instance, several months ago, some of my friends delivered this brownie cake to me:
Here’s another picture that helps. Facebook just reminded me that two years ago, I got a tattoo on this anniversary.
I might get bent out of shape when people try to tell me that same thing, but when the reminder comes from myself, I’m more than okay with it. I need it, in fact. When I got that tattoo two years ago, I was on the eve of my memoir’s publication, but I never would have guessed all of the ways my life was about to change and all the ways I would be challenged. In the coming months I would deal with the exposure brought on by the memoir. I would watch my father die a very difficult death and deal with family dynamic struggles in the wake of that. My husband would file for a divorce and I would move to a new city in the mountains where I’d buy my first house all by myself. Out of all those things, losing the stimulator has been the hardest. I look at my arm and try to remember the message I sent to myself with the tattoo.
About this time of the year four years ago, I published an essay called Blue is the Color of Hope in Hippocampus Magazine. It was my coming out of sorts. I hadn’t ever been so public about my story before – not just about the chronic pain but about the sexual assaults which caused it. While I’m still proud of that essay, I can’t relate to it in the same way. What I said in the essay is that the physical pain transports me emotionally to the trauma of what caused these issues. That’s simply not true anymore.
Seventeen years have passed since I was raped in the Air Force Academy library. I still have PTSD. I still have chronic pain. But I’m not tied emotionally to the events of that past anymore. A bad day of pain no longer transports me to library floor or the ICU hospital bed, which is exactly what I wrote in Blue is the Color of Hope. When I read excerpts of Caged Eyes, my memoir, I hardly recognize the narrator. I’m like her in so few ways now. That’s a good thing; I’ve moved on.
Yet. The pain. Remains. Seventeen years later.
I have reservations about publishing this blog post. It’s long. It’s raw. And I’m vulnerable. But I still believe what I did when I published my memoir: we all have our stories and our struggles and the world would be a slightly easier place if we could all talk about them. Let’s get rid of all the shame. I also feel like I’d be a hypocrite if I didn’t ever come back to my blog just because life got harder.
One of the interesting things about my story is the obvious connection between my rape and these medical problems. I was raped, I contracted a sexually transmitted disease, and that virus attacked the lining of my brain and my temporal lobe. I had a 70% chance of dying, and I’m lucky to be functioning as I am. Many other survivors don’t have such a clear causal link to health issues, and yet their bodies are as irreparably harmed. They end up with medical consequences every bit as troubling as mine. Yet we treat rape survivors like they are on self-help journeys they should embrace. Don’t be a victim, we tell them, be a survivor! Thrive! Meanwhile we talk about perpetrators going to prison as if it is their lives being destroyed.
The man who raped me and caused my chronic pain served fourteen months, but I have served seventeen years. And counting…