Warning: this will be a long post. No doubt about it. I haven’t even written it yet, but I now this much is true. Long. It’s been an ordeal, and so many questions and requests for updates, writing it down seemed the best approach. I’m putting it out there this once. But it’s not a short story, and it’s not a Q & A; this is it. If the answer isn’t here, you’ll have to keep wondering. If you want to skim, just read the purple bits. You’ll miss the juicy stuff, but save a lot of time. Some of you know that things have been hardER the past few weeks; that December has been a shit storm of well, shit. It’s been hard in a PTSD kind of way, and that is just one of the diagnoses I’m processing right now.
So it’s been another tough December. December has become a month I dread. I want to just be excited for Christmas; I want to look forward to the lights, and the eat, drink, and be merry, but it’s become shaded by several years of tough things, that seem to multiply in this lights and magic month. Some of those things have been public things, perhaps impactful to some of us and not others. Princess Leia, Carrie Fisher, died on December 27, 2016. I know, a celebrity. But she was a heroine I could wrap my head around. I loved her as a character, and admired her bawdy, dry, in-your-face self. I liked her authenticity. Her death felt like one last slap in the face, in a year filled with cultural losses: David Bowie, Prince, Alan Rickman, Muhammad Ali, Umberto Eco, George Michael, John, Glenn, Gene Wilder, Debbie Reynolds, Leonard Cohen, Gwen Ifill, Elie Weisel… this list is short given all the names from 2016. My names may not be yours, but Carrie Fisher felt like one last sucker punch.
The other December challenges have been personal. December 27th (there’s that date again), 2015 we had to put our beloved yellow lab, Luke, to sleep. It’s such a horrible decision, and miserable timing, but it had to be done. December 2013 I was hospitalized, and was in recovery until the end of January. December 31, 2011, My mother died, after a long, hard deterioration from Huntington’s Disease; New Year’s Eve will never be the same. We had two exchange students living with us; I didn’t know if I was coming or going. That whole December was spent at Hospice, and our family was caught up in a painful maelstrom of grief. December. Feh.
This year, December blindsided me. While a little part of me is wary of Decembers now, it still blindsided me. I guess I expected something a little less brutal, but this December really sucked. It’s not over yet, but it has sucked since day one, so my expectations are low for these final days.
The month opened with such exciting expectations. We had tickets to Israel, and we couldn’t wait to see our grandson; we were departing December 2nd. December 1st I had a terrible headache that wouldn’t go away, but I knew I was leaving to see my grandson, daughter and son-in-law, and I was too excited to let a that get in the way. I figured some Tylenol would knock it out. Then that night, I got a low grade fever, but my husband and I were convinced it was just a cold. A little voice warned me that it was more, but honestly, I didn’t want to listen. I knew I’d be playing with the Light Of My Life in 48 hours. Big trip; I just wanted to get on the plane and see them.
When we got up early the next morning, to drive to the airport, my headache was crushing (imagine the worst headache and add multiples), and I felt feverish, but off to the airport we went. I brought a thermometer, lots of tylenol, hand sanitizer, and face scarf. My temperature got up to nearly 103 en route. I shivered intensely from Seattle to Israel–– it’s a long way to shiver. I kept my face covered and used lots of hand sanitizer; I tried not to touch things. I was more worried about passing it on, than whether or not it was serious, but I don’t get fevers, so I did think it might be more than a cold. Mostly I just wanted to get there, get some sleep, and feel better.
We arrived, and my gorgeous little grandson (aka: light of my life, sparkle in my world, Yummy Guy, sheer perfection) was just what the doctor ordered, but I felt miserable. Everything ached––I could barely move my neck; I couldn’t get warm; I just wanted to stay wrapped in a blanket and lie around. But he cuddled me, and brought me toy after toy, and I thought I would rally. The 2nd day, my fever came down, but I was wrung out. I felt exhausted, and achy all over. I was pretty sure I had a sinus infection. The third day we went to the shore and had lunch, but I was dragging, and the headache came back. I didn’t sleep at all that night; intense pain in my head kept me awake. As soon as my husband woke up, I told him we needed to see a doctor.
When you’re traveling and you get sick, it all seems much more daunting. Is it a waste of time? Who to see? What will insurance cover? Why didn’t we buy travelers insurance! My daughter lives there, so she had suggestions for local physicians, but I new in my gut this was an ER trip. My daughter made it happen by insisting an ER would assess everything, while a local doc would just give us antibiotics. That seemed simpler, and was tempting, but I listened to my gut and my girl. Before we left, my little guy sweetly covered me in a blanket and crawled under to cuddle with me. He stroked my cheeks and kissed my forehead–– sweeter than sweet. He didn’t want to go to preschool; he wanted to stay with me. It was awful. Awful. He cried, and followed me back to my room–– where I went to hide, so my daughter could get him out the door. He grabbed my leg and wouldn’t let go. Really awful. I told him to got to “Gan” (Hebrew for preschool) and promised I would be right there when he got home. So very aweful!
My headache was crushing (have I mentioned that?); I could barely walk. Once we were at the ER I remember turning to my husband and saying: I feel like I might die. It felt possible. It was overwhelming, and I was sure things were not going to go much better in the ER. They didn’t. My daughter was there to translate, thank goodness! The nurses had a hard time getting an IV in; they had a hard time getting blood. My veins were a mess, from the start. They sent me for a CT scan, and told my husband he had to take me for the scan… across the street, in another part of the hospital. Yes, he wheeled me outside, across a busy side street, through security gates, and over to CT, with my IV attached. Our stay at this hospital in Israel was surreal from the start.
Communication was a problem from minute one. I don’t speak Hebrew, and while we were told most of the staff and all of the doctors spoke English, they didn’t. My problem, not theirs, but a problem for sure. They did a lumbar puncture (spinal tap), which hurt a lot; lots of blood work, that hurt; IVs and more IVs when veins burst, oh so owy; a painful sinus exam to get cultures; a blood gas, they always hurt. I’m not super brave, but I didn’t flinch. They sent me for a chest x-ray (painless) without explaining to my family, that they needed to bring me back. So, when the imposing Russian tech was done, she wheeled my bed out into a busy lobby, barked more words at me, and left me there. I lay there totally confused, and increasingly woozy. A kind Filipino woman finally asked me if I spoke Hebrew. When I told her I didn’t, she explained that my family was expected to wheel me back to the ER cubicle. I lay there feeling totally overwhelmed and confused. I didn’t know where i was, where my family was, or how I would get back there. Thankfully–– after lying there long enough for people to walk by, look at me, push my bed out of the way, or grumble about me being in the way–– this same kind woman, found someone to wheel me back to the ER. Thank you, thank you, thank you kind stranger, with the face and voice of an angel.
That’s when they let us know that the spinal tap had come back positive for meningitis. Things got scarier from that point on, and moved faster. They admitted me for meningitis and an acute sinus infection; they blew more veins and started IVs in other places; they drew more blood. I felt like a pin cushion, as bruises started forming all over my arms and hands; I white knuckled it and tried not to complain. My head hurt so much, and because I’m allergic to most pain meds and nearly all antibiotics (due to an immune disorder) the doctors were afraid to give me anything. My husband was overwhelmed, my daughter was worried, and to be honest, I was numb.
It was miserable–– the needles hurt; the conversations all sounded like a foreign blur, even the ones in English; everything was confusing and yeah, scary. By the time they got me to a room, with two roommates, and got the antibiotics going, it was nearly 9pm. We were all relieved to get things settled, even if settled was overwhelming for all of us. When my husband and daughter finally left (jet lag was still an issue for me and my husband, and I hadn’t slept the night before), the IV antibiotics were flowing, and I just wanted to sleep.
But the going sideways wasn’t done. I knew within about twenty minutes that I was having an allergic reaction to one of the antibiotics, and so I hit the nurse call light. When the nurse came, she didn’t speak any English. Neither did the next two nurses, or the doctor they paged. My hands swelled, and the itching had me drawing blood on my scalp, from violently scratching. I tried pulling at the IV; I tried medical charades. I tried not to panic, and focused on getting the message across, afraid of anaphylaxis–– something other antibiotics have caused for me. It took a scary amount of time, but they did figure it out and gave me IV Benedryl and steroids to counteract the reaction. This too was terrifying, as I couldn’t understand what they were saying, and wasn’t sure what they were giving me.
The Benedryl, combined with jet lag, illness and an incredibly exhausting, stressful day had me delirious for sleep. However, the room was small, and the two elderly women in my room were moaning and wailing loudly. One of them kept reaching through her curtain and grabbing my arm, calling out the name of what I believe was her dead husband. She was speaking in Russian (there are a lot of Russians in Israel); I’d met her two sons and grandson earlier. Neither of them was named Boris. It was more surreal, more scary. I eventually dosed off, but they came and wheeled me to another room at 3am, with no explanation. Later I learned that one of the women was contagious, and with my immune issues, they were worried about me sharing a room. Go figure.
The new room was a nightmare. It was small and cold. Beyond the peeling paint, the torn curtains, and overall disrepair, the actual temperature was so cold. A friendly nurse brought me another blanket, after telling me how cold it was, but I couldn’t get warm. There was a large vent at the window that blew on me constantly. It was totally covered in black mold, that covered the entire vent and up the ceiling and wall. I felt like I was taking in toxic air with every breath. The room looked out on a series of vents, and then out to the street, where I could watch people coming and going. It was a very Hassidic neighborhood, and I was there over Shabbat, so it was that much more surreal at times. At night none of the staff spoke English, and they’d come in to take blood, get stats or check on me, and explaining things in Hebrew. I felt disoriented and scared each time. In the dark, it was extra confusing, and scary. One night, the nurse didn’t clamp my IV, and when I woke the IV line was filled with my blood. The nurse took it out, and hung it up. The next morning, the bloody line was still hanging there, when the day nurse came in. When she tried to insert it back into my arm, filled with clotted blood, I refused and demanded a fresh line.
Things just felt worse daily. My family brought food and visited, but nights were awful. My headache improved, but I was still really sick. The Infectious Disease docs were amazing, and we were grateful each day when they checked in, but everything else felt confusing and scary to us. On day four I woke shaky and tearful. My son happened to text me from home, right when I started crumbling, and I was so grateful for the connection. I sent a text to 4 friends and reached out. They kept me afloat for a couple of hours. with texts and a phone call. They were anchors, reassuring, and calming me. . They helped me feel less isolated and… scared, until my husband arrived to talk through the situation.
The final thing that day involved the woman who was cleaning. She came in with a bucket of strong-smelling (ammonia) chemical water. She said nothing, and then threw the entire bucket of water across the floor. It splashed on me, and my bed; it went everywhere. She got a second bucket and did the same thing, as I sat on my bed stunned. She took a third bucket and poured it over my IV. I didn’t know it, but apparently I was supposed to have waited in the hall while she cleaned. Instead, I had to walk through about 1/2 an inch of this water, to leave the room. It was the final straw, in what was a horrible experience all around. While the doctors I dealt with were all good, compassionate,and thoughtful, and most spoke English so they could explain things to us, by day four I was medically weak and exhausted, and mentally pushed to the limits. We decided to fly home right away, and my husband booked a flight for early the next morning, and we left against medical advice. While I was relieved to be leaving that hospital, the idea of leaving our kids and grandson early, was devastating. I waited months for this trip, and spent virtually no real time with them. I wanted so badly to wish it all back to normal, but everything was completely sideways.
That was easier said than done. This story is long enough; I’ll spare you the unbelievable details of getting me home. It involved stopping at the hospital for one last IV, before the airport; an intestinal bug the morning we flew; 2.5 hours on the tarmac for ice on the wings (in Israel! This doesn’t happen, and they have no de-icing machines) and then 5 hour flight to London. There were delays in London for a snow storm, and then another 10+ hour home. The British Airways staff were incredible! They knew how serious things were, and they could not have been kinder and more supportive. We arrived home, got through customs with all of our luggage missing, and faced rush-hour traffic for our drive to the local hospital, where they were waiting to re-admit me for continued treatment.
I’ve never been so happy to see a hospital in my life, as I was when we arrived at our local hospital. It was more IVs, more blood draws, more people, more details to tell–– but everything was so clean, professional, and familiar. I’d been awake for about 40 hours, and was spent. After days of not flinching, I completely fell apart when the admitting doctor asked me to detail everything that had happened in Israel. Completely. Fell. Apart. I could not stop crying. I was shaking violently all over, and couldn’t stop. All that pent up anxiety just spilled all over, and I was a wreck. I was so grateful when they gave me IV Benedryl (after yet another allergic reaction), and was taken to a quiet, isolation room. Since none of the cultures were back, and I had GI symptoms, I was treated as a contagion risk for the full four days I was in the US hospital–– this meant full paper gowns, masks, and gloves for anyone who entered my room, beyond the curtain at the door, or anyone who had to touch me. It was a mind-boggling contrast to the lack of precautions and supply limits overseas. There are advantages to both places, with bad food in both (better in Israel), but it was a relief to be in home.
(Hospital humor, once I was home… I sent to my kids late at night. I couldn’t make it smaller)
Where are things now: I have two partially collapsed lungs, that still have a ways to go, and lots of follow-up appointments. My balance is not great, and I’m slow to respond, overall. Last Friday, in one final cosmic twist, I began struggling with speech and some processing–– couldn’t find words, couldn’t think of what I wanted to say, slow processing, and not entirely making sense. Back to the ER we went, where they blew more veins, threw around scary words like stroke, encephalitis, and readmission. They ordered more blood work, and a new MRI, in that scary closed MRI–– if you haven’t had one, imagine being in a small casket, awake… for 45 minutes, trying not to open your eyes and see how small the space is… while a loud machine hammers away. The MRI showed no infection. The doctors explained that there is still swelling around the brain, and that is probably impacting my speech/processing right now. It translates to stuttering; hesitating with words and sentences, and some other struggles. For 2 very scary days, I could not write. Every other word came out twisted around on the page. I was writing my brother birthday letter, and it was like some garbled alphabet soup. I was fixing every 2-3 words. Scary. Scary! The language is upsetting. It’s embarrassing and hard to explain to people. It’s a great opportunity for my husband to say “honey, you probably don’t remember; you weren’t making much sense,” whenever we disagree about anything from the past few weeks. For the record, I do remember things. The speech is the most challenging right now. It makes it hard for me to want to see people or talk… hmm, something I do a lot of, normally–> Universe—> Twisted.
I’m spending LOTS of time in my house, binge watching things… because books are harder right now. That’s improving, but has been frustrating. December 28th I had a PT appointment, less than a mile from my house. I figured I could finally drive myself somewhere. No; big mistake! I was nearly in a head-on collision–– and by nearly, I mean blaring horns, swerving to avoid hitting, and me tearful and shaken. I did not stop at the bank afterwards; I went straight home and went back to resting. It’s a bit like being drunk, and horribly sober all at the same time… all day.
I’ve been accepting help (something I’m notoriously bad at): meals, friends with movies, rides to appointments, hiring someone to wrap my gifts and do some shopping, and letting friends do the entire Christmas dinner. Friends have made this amazing. They have been there in ways I can’t fully thank them for. It’s dizzying who shows up, and who doesn’t; who calls, or offers to help, or isn’t around at all. Friends become family sometimes.
Way too many people wanted updates. They all have the best of intentions; we know that. However, while I get it, we could barely deal. Extra, extra! Sick people don’t feel like writing updates, and their spouses have no interest at all. We were in survival mode, not fill people in mode. Man, we’re still treading water. It’s getting much easier, but it’s deep water. So please don’t take it personally when I don’t answer texts, or I cut and paste from text to text, or I post an update on Facebook–– which seems super impersonal, or attention-grabbing, but is really just survival. Survival.
I’m tearful when I talk about it, but everyone has questions. So I’m writing it down, getting it out. It’s taken a while to process enough, to do that. And this PTSD thing is real. I still cry easily, and get stuck in a moment. Things overwhelm me. I agreed to go to the movies on Christmas day (Star Wars and all) and I felt like I might melt down right in the midst of all those people, out in their festive pjs. Too much. I’m tired and frustrated with the situation and myself (and yes, I get that I can’t change things), and I also get that I can’t rush this. If the doctors say it will be about 3 months for a full recovery, I need to slow down and accept that. I can’t do crowded theaters, drives into town (yet), or socialize in big groups. I can’t talk a lot, it hurts my head. Silence is my best friend right now. Baby steps. The Universe has some lessons for me. The Universe is a fucking riot… but she’s met her match.
That’s it; don’t ask me any more… this is the one and only, very, very long update of this hellish month. You don’t have to be down in the dumps with me (I’m climbing back up and out). Share your merry and bright moments from Christmas, Hanukkah, Kwanzaa, Festivus, or whatever you do or don’t celebrate in December. Or, just tell me this was too long. And hit Like. We all need a good like now and then. Now AND then would be good! Either way, I’m glad for the company.
If your not a comment reader, read this. I responded to a friend regarding the writing of this post, and realized it’s worth highlighting, as it’s something I think about often–– what to share, and what not to. This could be a blog post itself! I told her: It is not a nightmare to retell. It’s cathartic, as someone said to me. One of my docs reads the blog, and while I was in the hospital, he urged me to “write it down, get it out!” It’s always a quandary in my mind: is it self-serving or too much, to put things out there, or is it connecting through words and experience. I believe it’s the second, but struggle with the decision, each time I hit post. It’s also self-preservation. Each time I get an email, or text, or phone call (few people actually call anymore, but there are a few rebels left!) asking how I am, it’s draining and hard to share. The speech thing is exhausting, but the processing and explaining really does hurt my brain right now. So, here it is… a personal account of this experience. Not a nightmare, but a beginning of healing. Thanks for being there, and sending love.
PS) the next post is almost done, and I promise, it’s a very happy post… lots of gratitude!
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KAPOW! I didn’t meet the 2016 goal for Likes on the Tales From the Motherland Facebook page; missed it by 14! So this year, I’m not setting a goal. I’m grateful for each Like I get. Have you stopped by to spread some fairy dust? Follow me on Twitter, LeBron James does (yes, for real)! Most importantly, if you like a post I’ve written, hit Like and leave a comment. Honest, constructive feedback is always appreciated. Click Follow; you’ll get each new post delivered by email, no spam.
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