Tethered to the Wall, a medical tale with weirdly Seussical elements

So, over the past few months, I’ve been having what my doctors assumed were seizures that caused blackouts and a weird time period of about an hour where I had am’nesia.

In order to prove or disprove(since most of my medical history requires ruling out rather than ruling in), my doctors checked me into the 24 hour EMU, epilepsy monitoring unit.

Silly me, I must watch too much SciFi, I envisioned a special room where they could read the monitors wirelessly. So I resigned myself to 3-5 days with electrodes glued to my head, stuck to my head. Friends, that would have been lovely. No, they use an industrial epoxy to glue on the electrodes, pull all the cords through a sock on your head and tether you to to the wall.

Guess what, these cords are heavy and the bathroom is at the end of the leash and a camera is on you constantly. I may have looked like a Seuss character, but my world felt a little more Clockwork Orange. Kubrick does Dr. Seuss? Doesn’t compute does it?

Fortunately I had an episode the next morning, while the doctors were in the room, and no one noticed. This concerns me, obviously I’ve mastered the “everything is fine” modus operandi, but I would prefer not to lose bits of my life an hour at a time. The doctors ruled out seizures and turned me loose less than 24 hours after check-in. FYI, it takes much longer than 24 hours to get the epoxy out of your hair. In case you are contemplating the look for Halloween.

So on we go, remembering most hours and trying to live as normally as possible.




Mental Clutter

My brain is cluttered. Well, for that matter, my house is beginning to reflect that a bit, too. I spend an inordinate amount of time cleaning up Maddie tufts. How she still has fur is a mystery to me. But, back to the mental clutter.

During this morning’s Transient Global Amnesia episode (which are happening with more frequency rather than less), I was obsessed with making sure our fish were fed. Now keep in mind, we don’t actually have fish, in fact we have never had fish. When I lived in California, I had a fish, his name was Ennui, French for bored. I find this totally appropriate for a fish. But now I am dwelling on this fish, who has been dead for 15 years. I can’t remember if I took my vitamins, but I am all about ensuring the fish gets fed.

I am truly fascinated with the way our brains do and sometimes don’t work. But, in case you are wondering, I never once forgot to feed Ennui back in the day, but I am fairly certain I didn’t take all my vitamins this morning.

Entirely too much mental clutter.

This is very rare, you have a 100% chance of it happening to you…

There are lots of things I would like to forget. Bad hairstyles and questionable fashion really top my list. Forgetting where I am and how I got there, not so good. Forgetting not only that the Super Bowl was played, but that we won it, REALLY not good.

A recent new addition to my symptom collection is Transient Global Amnesia. Most people have about a 1% chance of it occurring, so of course this means I was a shoe-in for it. Essentially an attack can last for a couple of hours and during that time I have about a 15 second memory and no memory of the last few days or weeks. It all comes back after the attack, but while it’s happening is very scary.

But something good came out of this. I stood up for myself and what I know to be true about my body. Instead of layering another questionable drug on top of my already questionable drugs, I talked my doctor into let me stop taking a drug that is wreaking havoc on my system. And the TGAs slowed down and got less severe. Now,  we still have to figure out of we can make them stop completely, but I feel pretty good about the direction I’m headed…

Now, what were we talking about? 🙂

Finding Laura

It’s been nearly a year since I last wrote. I’ve allowed most of myself to fade away in a cloud of over-medication and TV binging. It’s so easy to lose who you are in the struggle to be simply comfortable. But I want so much to be more than comfortable. I want to laugh and think, and express myself. I have to believe that I am still here in this fog.

This weekend I was able to spend time with former co-workers and dear friends, Nick and Lori. For a few moments, I had to push myself to remember that woman I used to be. Am I ready to be her again? Heavens no, but I am ready to work on bringing back a part of who she used to be…

So congratulations, you have just won tickets to the contest of Finding Laura! Which means you may find yourself subjected to posts that may or may not make a ton of sense and will likely contain grammatical errors (shiver) and misspellings. But, at least I am trying to employ my brain again, it’s just a little out of practice.

Much has happened over the last year, some good, some bad, and over the next few weeks, I will begin to tell you all about it, but today I am committing myself to reconnecting with you and with myself.

Love to all of you, thank you for continuing to make me a part of your lives.

Over Used Words

I’m sorry.

I say it over and over again. I’m sorry.

I’m sorry that this disease has changed our lives so dramatically.

So many things are out of my control. I’m sorry.

I’m too tired to spend the day with you. I’m sorry.

I can’t always carry on a proper conversation. I’m sorry

I’m not sorry for the things I can’t control, I am sorry for the impact these things have on your lives.

I love you so deeply it is ingrained in my soul. I am not sorry.

I am still here, sometimes buried deeply, but I am here. I am not sorry.

I’m sorry for the over used words.

Independence and the ick factor

WARNiNG – Toward the end of this post, I promise to give you fair warning, things may get a little icky. If you have a delicate tummy, or, if these are things you’d just rather not know, please stop reading at the Ick Factor subhead. Now that I have published my disclaimer, I feel more comfortable with my update. 🙂

I am past my post surgery recovery phase and have gained a new level of independence. I am comfortable and safe being home alone all day, even though it is a little lonelier than I like, Maddie is lousy with conversation and I’m still terrible on the phone. But, I don’t have to make any transfers and every week I feel a little stronger and a little more capable.

Everything healed perfectly and my belly doesn’t look like the topographic map I feared. There is something very gratifying about pleasing the surgeon. Words like, “perfect”, “healed exactly right”, and “couldn’t be more pleased” somehow make me feel like I accomplished something all on my own… Not that he might be a world class surgeon, oh no, I did it all on my own. But this surgery was a smart decision and it’s opening up opportunities for Doug and I to travel, for me to use the bathroom all on my own, (such an accomplishment at the age of 44), and to be able to go out around town for longer periods of time without fear. All in all, it’s quite glorious.

The Ick Factor (now is your opportunity to close your browser and walk away)

Friends, I pee from my belly button. It’s too creepily weird. I have strange dreams about it nearly every night. Maybe it’s because I watch too much science fiction, but this is just plain too freaking weird. Every time, I get the shivers. I feel a little like a scientist-crafted sort of human. And, I can put a significant length of the catheter in to my appendix through my belly button. Just ick… Have you ever heard anyone say that before? Oh, and here’s a lovely side effect no one mentioned. I can’t always feel when my bladder is full, especially if I’ve had coffee, (I miss daily coffee). So now I can wet myself through my belly button. Seriously? Just ick… Over time, I will get better at this, with practice, but right now, we have independence and the ick factor…

Taken for granted?

Oh my dear former life, did I take you for granted? Did I really appreciate and celebrate all the amazing things I was able to do? Did I take advantage of the opportunities presented to me?

I climbed Angel’s Landing, biked Arches, climbed to the top of St. Peter’s Basilica, toured La Familia Sagrada (which a documentary about, inspired this note), rode 115 miles in the Nevada desert.

Made amazing friends, built an incredible family (ok, it’s small, but it works for us), with the most incredible man in the world. The people I trust the most have been in my live, in my soul forever, they are part of who I am.

But, have I expressed that love? Have I really savored the life I had? Now that I am living a whole different reality, I don’t think I have appreciated my blessings.

I had an incredible job, with amazing people who sought out my knowledge and capabilities. I have mentors and friends that started as co-workers and ended in late night drinks and righteous indignation about the state of public education. Now that I can’t do that anymore, I miss them all so much. If I never told you, I loved all of you, even when you called from your car and spent 3 hours of drive time trying to figure out your next strategy and how many hours I needed to create your tools.

Now that I am living this new life, I am doing my best to celebrate each and every victory, no matter how small. I am meeting new friends who are amazing and understand first hand the challenges Doug and I face every day. I am spending time with dear, long time friends who just don’t care about the circumstances, they just love me.

Some days are harder than others, when everything hurts and nothing helps, know I am reaching out to all of you and all of my victories to ensure I don’t take this life, and these gifts for granted.

Celebrate your life today, love to all of you!