I'll be honest--adjusting to our new epileptic normal has been neither smooth nor easy.
This diagnosis isn't just about me. It affects my family, my friends and potentially, even complete strangers. We have to double and triple think any activity we want to do (Am I too tired? Will I be too tired after? Is it seizure-safe? Will we have access to emergency services should I need them?), we have to double and triple think leaving me alone in the house with and without the kids, or in a store or at an activity. Epilepsy has introduced us to the local police department and other emergency services. It has also introduced me to a wealth of new friends, all of them ready to support me and my family (as it turns out, people with epilepsy are just as awesome as the duck people we've met through the internet). As that family, we've hit a few bumps in the road, had a few deep why us moments, had snafus with the arranging and rearranging--and rearranging again--of Shawn's work schedule to fit our (my) appointment schedules and school schedules, and I've been a *little* overwhelmed at times with Avery's intense attention. We're all tired, the exhausted kind of tired that sleep doesn't solve, from constantly being on guard. I'm not getting out as much as I'm used to, and when I do, it's usually only to see a doctor. Shawn does try to make sure I get out, but I'm beholden to his (very necessary) schedule.
Right now, our world revolves around my seizures. It's not how any of us want it, it's not how any of us imagined our lives, but it's just how it is. We do our best to just stay in orbit most days and occasionally leave Planet Epilepsy when it's safe. So much is beyond my control and I just don't handle that well.
I cannot shower alone, go to the bathroom alone (I mean, I've always had an audience, including a duck, I'm a mom after all--but now it's a safety issue), shop alone, sit alone, sleep alone. Sigh. Avery's anxiety reaches a fever pitch when Shawn is at work, so my niece frequently comes over to 'babysit'. A few weeks ago I did reach the end of my rope; upon arriving at Target, I told my people to take their own cart, go in a different direction and don't even look at me if we passed each other: "You don't know me, I don't know you. LEAVE. ME. ALONE." Avery panicked most of that hour, but I needed that time away from them to do my own thing. I needed to be Amy, not The Epileptic. I am relieved to be starting our school routine, as Avery has something else on which to focus and obsess.
For myself, I think the most difficult part (aside from the total loss of independence) is watching my normally stalwart, level-headed, solid-as-a-rock husband become completely unglued--while trying to maintain his cool for me and the kids. But I know he's scared. And that scares me. My husband doesn't get scared. I will never forget the look on his face as the nurse ushered him out of the OR with newborn Ezra, and it was the same look as I came out of my last seizure. He's not just scared, he's panic-stricken. We've thought about videoing at least one seizure so I know what they look like, but Shawn admitted he can't do it, and I don't think I could watch it anyway.
I do have fears of my own, especially knowing how scared Shawn is. My fears range from the typical ones, such as losing control of my bladder or bowels, especially in public (knock on wood, not yet!), or how a migraine, sleepless night or particularly stressful day could lead to a seizure (all three together are certain to), or having a public seizure (not sure how I can have one more public than in the middle of the road, but I'm sure I'd find a way); to the moderately frightening, such as hitting my head or otherwise injuring myself or someone else; to the absolutely terrifying, like not regaining consciousness, not starting breathing again on my own (or at all), injuring myself in a life altering manner, hurting someone else or some other permanent circumstance. I have children to raise, my boys' future spouses and perhaps even grandchildren, to meet. I have responsibilities. I have things I love to do, want to do, need to do. I have people I love. I'm afraid of losing, quite literally, my mind, as my memory is nearly nonexistent and we've moved beyond Words With Amy to Sentences With Amy. Shawn makes me work for it though, but only if it's just us; otherwise, he helps, as to not allow me to feel embarrassed. I'm afraid of losing myself.
So we're working on perspectives.
One of the many things I learned about while working at the grief center was Wallowing Days. Everyone needs a Wallowing Day, no matter what you're going through. Yes, one Wallowing Day can often turn into several--but the important thing is to get stuck there. You just can't allow your Wallowing Day to turn into a Wallowing Life. I've been there, done that, don't care to return.
Yes, we're working on perspectives. We're trying to find the humor and the gratitude in our new normal.
I'm allowing everyone to laugh at some of the things I do and say coming out of seizures (apparently I'm rather belligerent and argumentative, convinced I did not just seize, even though I obviously just did, and Shawn is the most trustworthy person I know--but it's weird coming to with complete strangers in my bedroom because he calls rescue nearly every time, even though he knows he doesn't have to--he's run seizure calls, but I suppose it's different when it's your own wife), and we frequently take bets on the most inconvenient time for one to happen. When I do think one is likely to happen though, I quietly tell Shawn, then we both quickly and quietly leave the room. The kids don't need to see anymore than they already have. Want to talk humor? Autocorrect insisted I meant "elliptical" in my first paragraph, not "epileptic". Yeahhhhhh, it's funny. Go ahead and laugh. I give you permission!
We have so much to be grateful for right now, even in the chaos. For starters, Avery's seizure journey is over, but because of it, I'm able to have the understanding he needs because I remember the fear I felt then. Shawn's company, notoriously not an employee friendly company, is working with him so he's able to be around the house more. We have friends making themselves available to help with scheduling, travel and appointments. A co-op director who didn't run screaming when I trained her in seizure first aid and how to use my rescue med. I've taken back over the grocery shopping now that our local stores finally deliver, so that takes a lot of stress off Shawn. I'm trying to regain some of my strength and general life-giving energy through baking, especially bread. It feels so good to have my fingers back in dough, working it, shaping it, kneading it. It's therapy for my soul. I do what I can on the days I can, knowing I most likely won't be of much use the following day. But we're grateful for the good days I do have. And the smell of baking bread. We can have our fears, but cannot allow them to rule our lives.
We do still have so much to be thankful for. This doesn't mean we don't have hard days, it doesn't mean we can't admit to those days--gratitude and difficult don't cancel one another out. I'm not here to tell you otherwise or blow sunshine up your skirt. If you know me, you know I'm no Pollyanna. But my kids are watching how I deal with this. I'm setting examples for them, while also setting a precedent for how I want to live.
Perspective is lifelong work. It's not one thing which occurs automatically, it's always evolving. And we're here to evolve with it.
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