For as long as I can remember I’ve wanted to be described as a strong, independent woman. It’s been my aspiration, my north star. It’s all I’ve ever wanted to be.
Strong. I have this image of strength and resiliency looking like Wonder Woman walking tall and proud while she’s being attacked from everywhere, yet she just keeps walking, as if nothing is happening, because she’s just that tough.
Growing up I thought I was strong because I was so focused (and good at) proving that I was just as good as boys, that my gender did not come with limitations.
I thought to be strong I had to find an endless reservoir of resilience. When I fell I picked up my own damn self quickly and moved on. I don’t get hurt. I don’t have regrets. I don’t show weakness or insecurity.
Independent. I like to think that what independence means to me is I can make my own decisions and that I have a mind that is fully capable of formulating its’ own opinions and beliefs. I like to think independence means I’m fully capable of really doing anything.
But somewhere along the way independence turned into not dependent on anyone for anything. It turned into being (or at least feeling) alone and needing to do everything for myself by myself.
When I reflect on my life and think about my “weakest” moments it is when I’ve had to ask for help. It’s when I hit a wall and could no longer do it myself. I pushed myself so hard and so far that I fell and had no choice but to have someone help me therefore failing to deliver on my independence.
(Quick shoutout to my parents who have consistently been the ones to pick me up in those situations. And sincere apologies to my parents for not always being the most graceful or grateful of your help in those times – I promise I’m working on it… keep reading.)
On March 11th of this year I went into the hospital for a planned week long stay.
Six years prior to that I had a series of seizures and was diagnosed with epilepsy. A couple of months before that I had crashed my car into cornfields. I remembered nothing and we had no idea what happened. A couple of weeks after I had the seizures, I went to the ER with sever stomach pains. I was told it was an ovarian cyst and that it would resolve itself in the next couple of days. But instead, what happened for the next couple of days is that my appendix proceeded to burst inside of me. Long story short — three hospitals, countless doctors, four stomach drains, one surgery, and almost eight weeks later I was better.
Six years later I was back in a hospital. The goal of this hospital stay was to really understand my epilepsy. In order to really do that the doctors need to actually see a seizure. And not just witness you while having a seizure but to see what happens in your brain when you have a seizure. So they put all these monitors on your head like you’re a science experiment (I even had tiny, tiny needles put into the sides of my head) and then you just sit there, in the hospital, with the hopes that you have a seizure.
I had done this once before a couple of years ago. This was after years of knowing I have epilepsy and taking 3000mg of medicine a day but still feeling well… not good all.the.time. I called them my “seizurey” days. As far as I knew I wasn’t having seizures but I was feeling a lot of the symptoms I felt before I did have seizures.
These were days where I just felt off. I felt disconnected from the world. I could see what was happening around me but I felt like I couldn’t engage with it. I’d get a strong sense of deja vu (which, turns out, is a real neurological symptom) and many other symptoms that are just too weird and complicated to explain.
After talking to my doctor about these feelings we decided I should do the first hospital stay to see if we could find anything. We didn’t. I didn’t have a seizure. We learned nothing. And my doctor told me on the spectrum of epilepsy I was a pretty minor case and I should focus on learning how to live feeling this way.
So that’s what I did. I pushed symptoms away. I was strong and tough and just kept going.
Then, I decided that was crazy. I needed to keep trying to figure this out. I went to my primary care doctor (who I love) and asked what she thought I should do. I went to a couple of people she recommended who were helpful. And then eventually I discovered my new doctor who specializes in women with epilepsy (who I also love).
It took six months to get an appointment (not an unusual wait time for an epilepsy doctor because they are in such short supply). At that appointment, I explained my history, what I’ve been through, what symptoms I feel, and how often I feel them.
She looked at me and said (something along the lines of) – This is not okay. Something is wrong. Your epilepsy is not being effectively treated. Your epilepsy will be treated when you feel good all the time and are able to just live your life.
That felt pretty good to hear. She put me on a new med (based on her suspicion of what was going on) and we scheduled another week-long hospital stay to see if we could see anything.
Now, this being my second time around I was more prepared (I even brought a noise machine for my hospital room!). But, more importantly, I had a much better understanding of what triggers my “seizurey” days and I knew I had to try to force myself to feel that ways so we could see what was going on. I spent the week leading up to the hospital stay stressing myself out at work (I did 15 phone interviews in one day and the next day flew to New York for 6 hours). I deprived myself of sleep and got really, really drunk two nights before I checked in at the hospital.
When I checked in on Monday, March 11th I told the doctors all of this and they got big smiles on their faces and said great, way to go. Yes, it’s just as weird as it sounds.
Tuesday night in the hospital they prescribed sleep deprivation so I stayed up till 4am. Then, as I was about to fall asleep, I felt it. The strong sense of deja vu came over me, I knew where I was and what was going on but felt completely disconnected to it. I was supposed to hit a button if I felt anything so I hit the button. Nurses came in and my Dad was there. I talked to them but couldn’t really describe how I was feeling and told them I was really fine and maybe I just wanted something to happen so bad I thought it had. Then I feel asleep.
I woke up a couple of hours later when the doctors came in. They calmly looked at me and said – we saw around five seizures in your sleep. I looked at my Dad and we smiled. Maybe, just maybe I’d get some answers. Maybe, just maybe, I wasn’t crazy and something actually was going on.
Then I slept. I slept all day Wednesday (turns out triggering your own seizures is exhausting). Thursday my main Doctor came in and explained everything to me. Turns out my “seizurey” days were actually seizures.
They were able to find out where in the brain they were happening (my temporal lobe which controls memory and language). They learned that though small – and that I remain conscious – they were frequent. Based on all they learned they were able to create a treatment plan.
I left the hospital – a day early nonetheless – completely validated and hopeful.
I spent the next couple of days happy. I had been right this whole time. And I was hopeful, hopeful that maybe I’d feel better soon.
But then Sunday I had a panic attack. First, I was nervous about going back to work. Would my brain work the same way? (Obviously I’d been working a lot while having a lot of seizures, but still…) But that anxiety went away the next when I went to work and, turns out, my brain was still highly functioning.
So that was good. But the next couple of weeks … well … sucked. I had come off of one medicine and was slowly weaning onto a new one and was getting headaches every day. But, really what sucked was the reality of the last six years sinking in.
I had gone to so many doctors. I tried so many things. I spent so much money. But, worst of all I completely minimized my pain. I ignored my suffering. As a strong, independent woman I told myself repeatedly I was fine and to tough it out.
(To be fair to myself many doctors told me the same. And to be fair to m doctors these were very hard to detect seizures and it remains true that on the spectrum of epilepsy I am very fortunate. My story only speaks to how much there is still to be learned about epilepsy and how stretched thin neurologists who specialize in epilepsy are.)
Anyway, thinking about all of the last six years, well, sucked. All of my well-intentioned and loving family and friends kept telling me not to dwell on the last six years and focus on the fact that now we had answers and things would be better moving forward. And, yes, that is true yet I can’t help but think about the last six years. I was 24 when this mystery journey, that I didn’t even really know I was on, began. I wondered what I’d missed out on. I wondered what might have been different if I had I been treated effectively for the last six years.
And yes, I am so ready and eager to move on. I’m so ready to feel good and to regain control of my life. But, what I’ve slowly realized over the last couple of months is that I can’t ignore the last six years. I can’t keep suppressing that pain. I need to acknowledge that there’s very real pain and trauma that I need to deal with in order to move forward. New medicine is just one part of the treatment plan.
I tell the story of the last six years casually like it was no big deal and just some bad, annoying things that happened to me. As a strong, independent woman I don’t want that to define me. I worked so hard to make sure it didn’t drag me down. I also knew that so much worse (so much worse) happens daily to so many other people (so many other people) – so my circumstances weren’t that bad. I just needed to get over it.
But now I’m owning it – I’ve had some really crappy things happen to me. It’s been really hard. It’s sucked a lot. It seems unfair often. I’ve been feeling lost and confused and uncertain for awhile now. I have to keep telling telling myself that I have a real disease so I can accept it but that also means accepting that I have no idea how to actually live with it. I’ve also realized that to really move forward I need to deal with the pain and trauma of my life and I don’t know how to do that either.
So throughout these realizations one question just kept running through my head, “How can you really be a strong, independent woman when you feel like anything but that?”
I’ve been wrestling with this question for weeks now. I’ve been wondering if I actually am strong and independent. I’ve been exploring what does being strong and independent actually mean. Have I failed at being a strong, independent woman if I’m 30 and finding myself having no idea how to take care of myself?
Slowly I started to realize (with a little help from Brene Brown) that being strong doesn’t mean I have to be tough all the time. It doesn’t mean I can’t show weakness or not let things impact me. Being strong doesn’t mean I don’t get hurt.
Independence doesn’t mean I can’t ask for help, it doesn’t mean I should be alone. It doesn’t mean I can’t let others in. It doesn’t mean I can’t let others be there for me. It doesn’t mean I have to do it all all the time.
I’m trying to redefine what it means to be a strong, independent woman.
I think strength means acknowledging there’s pain and having the courage to deal with it. That image of Wonder Woman marching forward unscathed is not what strength looks like. Being strong doesn’t mean never letting anything hit you or slow you down because that’s a false choice. Things will hit you and they will slow you down.
Strength shows up in doing what you need to do to recover from that hit and then eventually, when you are ready, getting back up again to keep moving forward tall and proud.
Independence means having the confidence to know what’s best for yourself and what you need to do to best take care of yourself. It turns out allowing yourself to be vulnerable is key to this. Vulnerability doesn’t mean putting yourself on the line and bearing your soul to whomever. Vulnerability means having a true and deep enough understanding of yourself so that you can get what you need – what you need from yourself for yourself and what you need from others.
Right now, what I need from myself for myself is to cut myself a little slack. To give myself the space I need to cope and not put pressure on myself to figure everything out right away or do it all, all the time. What I need from others is help and I need real support, and that’s a pretty scary thing for me to admit.
So here I am. A strong, independent woman with some real stuff to figure out but confident my strength and independence will get me through this.