Of Torture and Rest…
by Nonna
Lord, as You know… and as You will… have mercy.
It seems like the most time I have for writing my weekly posts is while I’m laying in a hospital bed. I’m in room 416 today (actually my favorite room, probably because of the number), and once again it’s pretty quiet. The IV therapy floor tends to be a quiet place – a good place to rest – to feel the Quiet within and without.
I need the rest today. Yesterday I had the “dreaded” Tilt Table Test. For most people this test doesn’t sound like a big deal though. You lay down on a special table, you’re hooked up to some wires to monitor your heart rate and such, and your blood pressure is monitored as well – then they put a strap around your middle just in case you pass out – and they “tilt” the table up so that you’re standing. Then you just stand there for 30 minutes while they watch you and ask you how you’re feeling every couple of minutes. It really doesn’t sound like that big of a deal. I had heard a lot of horror stories about this test from others with autonomic nervous system disorders, but I figured I wouldn’t have as hard a time as they did because I spend a lot of time upright. Afterall, I’m an Orthodox Christian – we stand a lot for our services – so I figured I was more prepared than most people.
The thing is – I compensate though – I never stand absolutely still. Since my body can’t automatically move the blood from my legs to my heart and brain, I keep my legs/body moving, flexing the muscles etc. – so that I’m manually moving the blood through my body – and I have a cane so I can bear my weight with my arms as well as my legs. I didn’t really realize how much I do this, and I had no idea what would happen if I was forced to stand still without any means of compensating… I really had no idea I would be as messed up as I was… no idea at all… I was totally unprepared…
I don’t really want to think too much about what happened yesterday – it was one of the worst and literally torture-like tests I’ve endured. I would rather have another EMG (where they stick needles in your muscles and have you flex to measure your muscle strength), than ever have another Tilt Table Test. Here’s what I wrote in an email to a friend to describe a bit of what it was like:
“…obviously my heart rate went up right away (but not too bad, the IVs I’ve been having kept me from passing out and kept my blood pressure fairly stable)… after a couple minutes I was totally short of breath, then a few minutes later I broke out in pins and needles all over, cold sweat, severe headache, and the pain in my lower legs became intense. It felt like they were burning/pins and needles/and made of lead… then I couldn’t feel my feet properly at all – just pain/fire… my upper body went too light and my breathing became really erratic no matter how hard I tried to breathe slowly, my “heart cough” started back up, then nausea and the headache crept down from my head to my neck and shoulders. A few more minutes and my brain just wouldn’t work right – they kept asking me questions and the wrong words would come out of my mouth… my pupils stopped dilating properly shortly after the test started (the doc mentioned it to the nurse) but then after awhile my eyes stopped blinking on their own – I had to THINK to blink. She kept telling me, “Blink Jennifer. Blink.” I kept getting close to passing out – tunneling vision the whole bit – but they kept saying, “Don’t pass out,” and I managed to hang in there the whole time. But it would have been easier to just pass out instead of enduring the whole thing. I just hope she got the info she needed. Thankfully, she *did* write a new prescription for my IVs (6 months worth) – so I guess even if that’s all that comes of it, it was useful – but I’m just a wreck now.”
After they laid the table back down it took quite some time for my vitals and everything to return to “normal” – all I could do was whimper. (And then I found myself giggling a bit inside because I had that clip play through my head from Princess Bride – you know the part where Wesley is in the Pit of Despair and he lets out that whimper after his first time on the “Machine”? That’s exactly how I felt — and what I sounded like!) :) Thankfully the nurse had a wonderful bedside manner – he kept apologizing the entire time they were torturing me, and he didn’t let me out of his sight afterwards as I was recovering… he even pushed my wheelchair all the way out to the car in the parking garage! What a blessing…
*
So, it’s over.. all behind me now, and I just feel a bit like I was run over by some kind of wild animal – or maybe it was just a bus. :) We’re running my IV a bit slower today just because my body is so worn out from yesterday… which is fine, I’m not entirely sure how I’m getting home today anyway. I keep thinking, if that test didn’t make me pass out – then maybe between the IVs for my blood pressure and the seizure med for the “atonic seizures” – maybe they’ll let me drive again. It would be such a blessing to be able to take myself to all my appointments and not have to mess up the schedules of all those around me. I mean, yesterday Papa spent his day off driving me to the other side of town for a nasty test, and then driving back, picking up the boys who were with my mom, and then driving us all home… (plus he started a fire for us when we got back to the Humble House!)… It’s just hard not to feel “in the way” – and I know that my presence and “needs” are a burden to my whole family right now. Its a knowledge that’s very hard to deal with (another kind of torture all together)… I just want to give them some freedom from me.
How can someone so small cause so much hassle?
I’ve never been someone who is strong on their own. I’ve always been small… even as a young teenager, one of my nicknames was “Little”… And it’s true… I am a small soul. It amazes me that The Quiet within can be so all-encompassing – sometimes it seems to fill all that is – and yet, somehow it is contained within my smallness. It’s mind-boggling actually… how can something so intense exist inside someone so frail? I really am so very human. This life of mine requires so much repentance, and I’m still learning how and where to really start…
Lord Jesus Christ, have mercy on me, a sinner.
I am frail. Laying here, listening to the IV pump, if I close my eyes all I can feel is physical ache… but if I look within, deeper, there’s a hint of something steadfast, something transparent, thin, yet strong… this “something” that throbs with The Prayer within. It is more real than I am. Lord, have mercy… If I’m quiet enough in the Silence, I can hear an echo of the Great Ektenia from Vespers.. and I can’t help smiling that such a thing can be part of who I am. It is too wonderful – too life-changing. I can’t even grasp all it means to be transformed by this Reality. This Way – this Orthodox Faith – is so much more than a system of belief. It’s so much more than just believing in Christ — afterall the demons believe and tremble. It is this growing from glory to glory – this transformation… the journey of theosis – it is a Way of Life that creates real ontological change. That is how someone so small can dare to learn to pray… to learn to repent… to yearn for Communion…
I can never show the fullness of my gratitude…
1341… nurses with great bedside manners
1342… text messages from my Mister
1343… knitting plans
1344… Godparent requests :)
1345… cds made and given to encourage
1346… the smell of our woodstove in the morning
1347… beans and rice
1348… closed eyes, resting
1349… Zaccheaus Sunday – Great Lent is on the way!
1350… seizure meds that cut pain levels too!
1351… Papa and his willingness to help me get where I need to go – what would we do without him?
1352… fuzzy, warm, soft socks :)
1353… meeting a Facebook friend in “real life” and sharing our dear St. George’s with them
1354… wood stacked outside the front door – waiting warmth
1355… encouraging words from Evlogia again… how dear Mary Katherine is to me…
1356… dinner with The Professor’s Godfather and his wife – they even brought the food! :)
1357… body and mind weary, but at peace
1358… coming house blessings to attend!
1359… friends willing to “drop by” when they hear I’ve had a rough “testing” day — and they brought chocolate! :)
1360… The Quiet of transformation… for Communion
So many blessings poured out upon me… moment by moment… day by day. I am overwhelmed. It is all Grace… all glory.
Lord, have mercy…
