THIS POST WILL CONTAIN DOWNTON ABBEY SPOILERS.
I knew five minutes into last night’s episode of the on-PBS-so-it’s-fancy-but-it’s-still-a-soap-opera show Downton Abbey that I should turn it off. Sybil, a character on the show, was about to give birth when she complained of swollen ankles and a headache.
I immediately asked everyone on Twitter (yes, and therefore ruining the show for everyone) if there was a preeclampsia storyline on the show, since I knew a ton of my friends had downloaded it before it ran here in the US, because I was going to need to turn it off if so. But then the good folks at the Preeclampsia Foundation asked if I’d be watching, and I realized that thanks to the popularity of the show, it was going to be a great opportunity to educate more people about this disease, a disease that still, today, kills 76,000 women a year.
76,000, people.
So I watched.
I shouldn’t have.
I could have simply stayed online and retweeted all the links that the Preeclampsia Foundation was sharing to support it, without watching the episode. But I couldn’t look away. When the baby was born alive, and Sybil went to sleep, my mother and Charlie both turned to me and said, “See? It worked out!” but I knew that preeclampsia complications can persist until six weeks after delivery, so I knew she wasn’t in the clear.
I was feeling sad, and mildly anxious as I watched, until the moment when Sybil began slapping her forehead about the pain in her head, moments before she had a prolonged seizure and died. That was when the PTSD panic attack set in, when I began shaking and feeling my heart race and my anxiety reach a frenzied state.
Because I remember that. I remember the headache I had when they first admitted me to the hospital, and how I primly turned down any narcotics because I’m in recovery, and how two hours later the pain was so excruciating I could feel it throughout my body, and how I sobbed with the agony of it and begged for morphine. I remember the doctors huddling when the pain grew even worse and they were afraid that I would stop breathing if they gave me any more pain medicine. And of course, more than anything else, I remember the doctors coming in and saying the pregnancy had to end or I would die.
I remember it all, so vividly, and Sybil hitting her forehead caused me to flash back to it all.
I don’t take anything for panic attacks, mostly because I have them so rarely and most of the medications are bad for drug addicts. But I also get in a weird, locked down place where I don’t want to be touched or even have anyone speak to me. My mom tried to comfort me but I didn’t want it, I wanted her away away away.
Eventually I went to bed, but it took hours to sleep. When I woke up this morning, my insides were still roiling with anxiety. I stayed in bed because I felt safe there and tried to read. Eventually, after I read the same page 150 times, I was able to focus on the book and, thankfully, I eventually fell back asleep.
…..
It amazes me, how deeply it still hurts, after all this time. I thought for sure by now I’d be past it, that I’d be okay now. It’s been almost nine years since I lost my sons Nicholas and Zachary to the disease of preeclampsia. But even now, those wounds can be opened in a moment, leaving me right there in the moment feeling it all, again and again and again.
It fucking sucks.
I’m grateful that I have a platform, particularly on Twitter, where I can broadcast huge amounts of information to people. I know many who saw the links to information at the Preeclampsia Foundation (like the symptoms) will need it at some point in their lives. But I need to be better at walking away, even so. I need to remember how vivid the pain still is – even if I believe my sons’ legacy is to educate people. Sometimes I still have to take care of me.
The worst moment? When they stood there around Sybil’s body, and they heard the baby crying in the other room. Because I never heard my sons cry. And that still fucking hurts so much too. I miss them every day. Every single day.
{ 42 comments… read them below or add one }
I just watched the episode and sobbed. I can only imagine how hard it must have been, for anyone that knows first hand the horrors, to watch and relive.
I am thankful beyond words that you are alive.
I sobbed. It was too real, and I’ve never suffered from pre-e, but I know too many women who have. I’m so sorry for your loss.
Saying I’m sorry probably does little to ease your hurt, but I am. Oh how I am! I watched last night in stunned horror. I can’t imagine having to live through it (and then again and again).
I wish I hadn’t watched those 15 minutes or so of television. It was panic inducing. I didn’t have pre-e, but I had to deliver my twins by emergency C section and the show brought all of that horrific time back to me. For me, everything was ok in the end…but it could have gone the other way very easily. I’m sorry that you had to relive even a minute of that horrible time. If even one pregnant woman who was watching that show gets to the hospital on time, maybe it will be worth it? I hope so, because you don’t need to go through that shit again.
Sad that you had to relive this…
but grateful that you are here.
It was so hard to watch. I can barely comprehend the agony of experience. The legacy of raising awareness must feel very empty against the backdrop of what you had to go through, what you still go through. Never the less, awareness has its own power, and so do you.
I’m so sorry – I just can’t imagine . . .you’ve touched a lot of lives in very positive ways, – always always remember to take care of you too.
hugs, love and light –
Hillary
I’m so sorry, Cecily. And thank you for doing something positive with your grief and PTSD, even though it completely and utterly sucks.
Oh Cecily, I’m so sorry this brought it all back to you. I can’t believe how many women still die of preeclampsia in our modern world. We could have lost my SIL to it, although thankfully, she somehow managed to pull through okay. I remember being SO ANGRY at her doctors down in Georgia for letting her labor for three days because they couldn’t be bothered to come in on 4th of July weekend. She’d been SO SWOLLEN even a month beforehand when we traveled down for her baby shower, and pictures showed that it had only gotten worse as she approached her due date. I don’t think I’d be exaggerating if I said she’d retained 10 pounds of water by the time she gave birth. I was terrified about her blood pressure, and a massive lawsuit would have done nothing for my brother if he’d lost her due to their selfishness and negligence at the hospital.
FYI, there was also an episode a few months ago of Call the Midwife (on PBS too) where a woman died from eclampsia. Avoid! Anyway, last night, as soon as they started talking about that complication, I knew the episode would be a difficult one to watch for a number of women I know. For me, the difficulty was a different one, and took me a little by surprise. It was watching the scene where her sisters were kissing her forehead good-bye. I distinctly remember doing that with my brother after he died suddenly (of an overdose, incidentally) and the image instantly made me flash back and brought me to tears. That said, my experience was a difficult and sad one, but not anywhere near the danger and loss of yours. My heart goes out to you.
Big ((hug)), Cecily. I was thinking of you last night. It was a hard, chilling episode – and I can only imagine how awful it must have been for you to have watched.
The headache was the trigger for me as well, the anxiety and remembering how those HA felt (in fact my own is still lingering around today). Plus feeling all shaky inside.
I think as each day passes, we forget just how terrifying the whole thing was, only to have something like this bring it all back. I am coming up in a few weeks on the 13th anniversary of my first DX with Pre-Eclampsia (August will be the 1th Anniversary of my 2nd dx). There are not many people who get why it can still bother me seeing as it happened a decade ago, except for those I met at the PE forums
So, very, very sorry for the loss of your sons.
Yes, this. I was okay up until the headaches, too. I knew what was going to happen and I HAD to watch. I didn’t get to see myself have the seizures. I felt those from the inside out. And mostly I did not feel anything anymore – as I was unconscious. My reaction to the scene was visceral. I can still feel it flowing through me now. Even after talking it out with my therapist. Even though I am finally dealing with the PTSD after 6 years. My son survived. I grieve for you and your boys. Thank you for sharing your story – I know it hurts. Take care.
You are the first person who has made me happy I haven’t watched the show. While I’m glad it’s an opportunity to educate people, we can still educate some people while not emotionally torturing others.
Sending you a lot of love. Thank you for sharing this even though it’s so difficult. People need to know and be educated.
Thankful for you everyday and for everything you have done for so many people!
I too had thoughts of turning the channel last night. But, I couldn’t. I wanted to see how they portrayed the facts of the illness. I knew that millions of people would be watching the show. As hard as it was to watch, I know that it brought education and awareness.
I suffered from PE/HELLP in 2004. I lost my son at 20 weeks and nearly lost my own life. The trauma suffered and feelings associated with loss are never far below the surface. Last night’s show affected me too. I am 100% with you when you say, it fucking sucks. It did, it does, suck.
Sending you hugs & wishing you peace.
I’m sorry, that must’ve been awful for you to watch.
I’ve never seen the show, though of course I’ve heard of it; you’d have to live under a rock not to. That’ll be an episode I’ll avoid if I decide to watch it on DVD in the future. (I had preeclampsia with my twin boys, too, though fortunately for us, I didn’t have to deliver until 34 weeks, and we are all fine.)
I thought of you last night as I sat stunned and silent watching the show. I’m so sorry it caused you so much pain and anxiety. Take care of yourself, sweet pea.
I was reading you back then, not sure if it was under this name or not.
(((((((((hugs))))))))
Love you, Cec. xo
Oh Cecily I’m sorry. I live under Sharon’s rock, or one nearby, as I’ve never seen the show and not until your post did I know what had happened on it last night, though I’ve seen several people on FB commenting on “Not Sybil!” Now I know what, and why.
I hope the show did serve an educational role, and not simply leave the impression (to uninformed viewers) that this is something that “used” to happen.
As I was watching the show last night, as soon as she said swollen ankles and especially headache I thought to myself ‘get that baby out, NOW!’ I did not have pre-e but I could have (the doctors were worried about it all thru my pg) and I have read about it and read your blog (& Julie’s) for years so I knew about it.
I did NOT know that the symptoms persist for so long.
I am sorry that it still stikes you so horribly. Love to you, your marvelous family and your beautiful boys.
I’m so sorry.
So sorry for the loss of your boys. I had pree and lost my little girl just over 10 months ago. I had heard what was going to happen on Downton, and decided not to watch the entire season. I love the show, but I was filled with so much anxiety just thinking about it. Too close to home. I’m sure hearing the baby crying was just heartbreaking. I can’t even think about it.
I am so sorry for you loss. In the natural birthing community that I roll with, sometimes the women can get nasty about preeclampsia. “It is all about diet” they’ll pontificate. I never had it and I don’t know too much about it- other than the fact that it is a complicate set off issues all working together. I am happy you survived it, and I am thankful that you are a brave soul to help get the word out about it.
I have never been so thankful that I don’t watch a show because I don’t need that memory trip.
I am so fucking thankful that you are here and alive, my friend.
Oh Cecily – how traumatic. I don’t watch Downton Abbey (but when I saw your update on FB I was coming in to warn you that there is an episode of Call the Midwife containing such)
Please be assured, however, that your story has educated me (and no doubt countless others) about the risks of pre-eclampsia and some signs to watch out for – it is poor compensation indeed, I know.
So many hugs for you.
I’m so very sorry for all you have been through. I can’t imagine. You are very strong to share this. Sending thoughts of love and peace to you.
Thank You for caring for others enough to watch. You are braver than I would ever be. Sending HUGS and Love.
I had a good outcome with pre-ecclampsia. My son came early, but in the end we were both ok. Even so, I sobbed and sobbed when I saw that episode. I don’t think I’ll ever be able to watch a pre-ecclampsia/ecclampsia story without getting upset and anxious.
I can’t even imagine how hard it must have been on you. I’m sorry.
I don’t know the show, and probably won’t watch it. What I was going to comment on is the memories. My parents lost my 10 year old sister in 1975 to childhood leukemia (a disease these days that is almost 100% curable) and to this day there are still triggers that shoot my mom in particular right back to that dark era. It isn’t every day, it isn’t every moment because that is nearly 40 years ago … but that pain, it lives with you always. I’m not trying to compare losess here, I’m just saying its ok to greive, even 9 years later. Its part of what makes us all human, and connected.
XXOO
I had to get up and leave the room. This is the only kind of pregnancy and birth I know – I’m two for two. I am thankful to be alive but I don’t find this kind of story entertaining. I don’t want to watch a favorite TV show and be reminded anew that I am lucky to be alive.
I don’t watch Downton Abbey, but if you’re on the Internet much, you’ve heard about it and about what happened to Sybil. I’ve been waiting for someone to comment on it from a pregnancy loss perspective. I only hope people don’t think that it’s one of those things that wouldn’t happen today, because it most certainly does.
I always knew my mother had “a hard time” when I was born, but it wasn’t until years later, after my own pregnancy, that the words “eclampsia” & “toxemia” were used and began to have meaning for me. I only just heard her mention convulsions this past Christmas. She has said we are both lucky to be here, and the more I learn about eclampsia, the more I realize how true that is.
I am so sorry :( A lot of my ALI friends were beyond horrified and shocked by the episode. (I confess I haven’t watched it yet and I don’t know if I will be able to.) It’s hard: raising awareness is important but taking care of ourselves is also important.
Sending Internet hugs.
You were all I could think of when I watched. I told your story to my husband who was watching it with me…and who had no fucking clue about pre-eclampsia.
I’m so sorry.
I’m here through Loribeth’s blog. I had pre-e toward the end of labor with my twin daughters after an uncomplicated pregnancy. We all are OK, but the Downton episode was very hard for me to watch.
I am very sorry for the loss of your little boys.
The headache! When I read that my trauma with preeclampsia came flooding back. I did not watch the episode, but heard there was a storyline about preeclampsia. My mom, a veteran nurse, walked alongside me & advocated for me 7 1/2 years ago when “mild” preeclampsia became nearly deadly 3 days after delivering my twins. My mom had to process re-experiencing the trauma of almost losing me after watching the episode. She was shocked at how strongly she was affected by watching it & how intense the feelings around the trauma still are after 7+ years. Thank you for taking the time to watch something you knew was going to be painful & for your willingness to write about your experience & this ellusive disease.
This post hits so close to home for me there are no words to even begin to describe it or what I am feeling or thinking.
But I do want to say thank you. Thank you for educating those around you about preeclampsia. Thank you for this post.
I’m so, so sorry for the loss of your precious boys.
I am a pre-e survivor and Downton Abbey lover who hasn’t watched the episode yet. My plan is to watch it alone in my room where no one will see or hear my “ugly cry”.
Thank you for sharing your thoughts and bringing much needed attention to this horrible disease.