After I came home from the hospital, I thought things were going to get so much better. I was sure that I’d start to feel like myself again and that, just by being home, I’d be able to rest and heal from the perforation and all the damage done to my body.
I was wrong.
Instead, I came home from the hospital and found everything had changed. It was our house still, but it was different. The dining room looks like a hospital supply closet. There was an IV pole and giant bags of TPN in the fridge. There are still IVs in my arm because of the PICC line. I couldn’t even walk up the stairs to the front door without having to stop and rest a few times. Everything was the same, same couch, same bed, same joy to be living with Will, but everything was also starkly different.
I began to have panic attacks, moments where I could feel my skin crawling and was hyper-aware of every part of my body. At one point, I could have sworn I felt my spleen. I felt vulnerable, unsafe. What if something else happened? What if we couldn’t get to the hospital in time? These are the thoughts that kept me from sleeping, along with the fact that I couldn’t get comfortable, as I am only allowed to sleep on my back, elevated. My back has a drain coming out of it, which makes sleeping very uncomfortable. Plus, I’m a tummy sleeper. Always have been.
As the twitchiness continued, and got worse, I realized there was something bigger I had to deal with, some trauma that needed to be processed.
Here’s the truth: I could have died. I’m not trying to be dramatic, but it’s true. When my duodenum was perforated, the fluid filling my abdomen could easily have made me septic, which can often cause organs to shut down. This is part of what I have to process, part of what I have to deal with in order to make it through the next few weeks, and the next surgery.
So I’m going to write about it. Because that’s how I process and deal and align myself with the reality of my situation.
Here’s what I remember: On the morning of the ERCP, we were all scared. Mom, Will, my sister, me. Nobody wanted the ERCP because we had a bad feeling about it. But there was no choice. It had to be done to help figure out what was causing all the problems. Dr. Brandabur came in to pre-op at around 1, to chat with us, explain the procedure, and answer our questions. My mother looked him in the eyes and said, “Don’t mess up.” He took her very seriously and said he’d do his best.
They wheeled me back into the procedure room, where the anesthesiologist, who was lovely, gave me something to relax me. Then everything went dark.
When I woke up after the procedure, I couldn’t open my eyes. I was in total darkness. I had no idea where I was or what had happened. I just felt pain. Then I realized I was choking. I started to sputter, cough, and tried to pull the foreign object from my throat. That’s when I realized my wrists were in restraints. I couldn’t move at all. It was dark, my abdomen was on fire, I was choking, and I was tied down.
It was, by far, the scariest thing that has ever happened to me. It brought up dusty memories and I thought I was going to be sick.
I don’t know how long I was like that, awake but in the dark. It felt like hours. It could have just been 30 seconds. There’s no way to know. When I did open my eyes, I saw Mom and Will. They were blurry but they were there. I began to frantically sign to them using the ASL alphabet.
W-H-E-N. W-H-E-N. W-H-E-N. Over and over again. Will realized what I was doing and pulled up the ASL alphabet on his phone. The answer wasn’t good. They said it would be awhile, maybe an hour or two. I was choking, panicking, and stuck. I realized something had gone horribly wrong, but had no idea how serious it was.
I thought I was dying.
About an hour later, the breathing tube was removed (which was awful and painful and I hope to never experience that again). Mom and Will came over the the bed and tried to fill me in on what had happened.
It had been almost 24 hours since I’d gone in for the procedure. The scope perforated the duodenum, as well as an outpooching of unknown origin. It could have been a cyst or a diverticullum, but we didn’t know. It just shouldn’t have been there. The doctor explained it this way: “I went to clip the sphincter of oddi (which should have helped the pain I was having initially) and turned the scope. Suddenly, I was looking out into nothing, which meant I’d perforated the duodenum and was staring into the black space of the peritoneum.
When that happened, my body started to leak peritoneal fluid and bile in the abdomen. This is a very bad thing because it can cause infection, which often leads to sepsis. Dr. Brandabur tried to quickly place a stent in my bile duct (the other thing that needed to be fixed) but it was so scarred and shriveled that the stents wouldn’t fit. He finally used a makeshift stent that likely won’t hold for more than 6 weeks.
After the procedure, which took hours longer than we were expecting, I was moved to the ICU. Mom and Will were finally allowed to come back and see me at around 7 that night. Nobody told them I would be on a ventilator, so my mom panicked and demanded to know what had happened. She didn’t get answers until close to 1am. I could breathe on my own, but they needed to let my body decompress as much as possible. Also, they were worried about all the fluid in my body because, if I were breathing on my own, I could have easily aspirated the fluid, which would be bad.
From my perspective, I went to sleep on Monday, feeling a little sore, and work up on Tuesday, choking, tied down, in pain, and having no idea what had happened or why we were there.
I asked two questions, when I could finally talk.
-What happened?
-Am I dying?
And even though they explained the complications and even though Mom and Will swore that I wasn’t dying, I spent the rest of my time in ICU feeling terrified. I was in and out of consciousness, due to all the medication they were giving me. I felt totally separate from my body, while being trapped inside and aware of everything around me.
It was awful, you guys. I was convinced I was going to die and I was really sad, because there’s so much more I want to do.
Once we got out of the hospital, all of this hit me. The fear hasn’t gone away. Every time we have to go back to the hospital (for scans and tests and, just last week, another unexpected 3 day stay because of issues with the drains in my abdomen), I panic. I sit in waiting rooms, or lie on gurneys, and tears drip down my cheeks, unchecked. It all hurts and it’s all awful and I have no control over any of it. If they want to cut me open, they do. If they want to shove another drain into my body, this time in my stomach right by my belly button, they do. It doesn’t matter how much it hurts, or how it makes walking so difficult we had to rent a wheelchair, just so I could get out of the house like a normal person.
Except nothing about this is normal. It isn’t normal to wake up choking and panicked and restrained to a hospital bed. It isn’t normal to have a tube going through your nose and into your stomach, sucking the bile from your stomach into a canister. It isn’t normal to have two drains coming out of your body that have to be emptied and measured twice a day. Nothing about this is normal.
I ran a half marathon less than 8 months ago. Now? Now I need a wheelchair to go to Target, or to take my mom to see the tulips in Skagit Valley. Now I take handfuls of antibiotics every day, to keep the fluid that is still in my body from becoming infected. I spent 12 hours a day hooked up to TPN, my new nutrition, which makes me feel nauseated and puts a horrible taste in my mouth, all the time.
Nothing about this is normal.
I’m sorry I’m not being all Bright Side today. I’ve tried, with no luck. There are milestones people keep celebrating. “Look! The doctor said you can have two bits of soup! Real food!” And I know I should be excited but instead, all I can think is, “How did I get here? How did two bites of veggie soup become the greatest thing to happen in my life? And when will this be over?”
We don’t know.
So I’ll just sit here, on the same couch, and keep processing. I’ve come to terms with what happened to me in the ICU, or almost. But there’s another surgery out there, looming, scary. It’s like a grenade we won’t see coming until we feel the heat of the explosion.
And I’m scared I’m going to die on the operating table. Which is a silly fear. Because all the complications are minute, unlikely to happen.
Except it did happen, a complication. And it’s caused the last month to be complete hell.
So there’s no Susie Sunshine in this post. There’s just me. Scared, tired, sad, and mostly worried about how everything is different, especially for the people around me. I worry about my mom, who has been here for a month to help me deal with all of this. She spends her days flushing my drains and changing dressings and taking my temperature and checking my blood sugar, and hooking me up to TPN, even though we both know it’s going to make me feel awful. I worry about Will, who has a full-time job, plus a full course load at school, plus training for the big National Championship race in August. I worry about the burden I’ve become and how I’m not the person I was 6 months ago. I worry for his happiness because I’m not doing very much to add to it right now.
I feel like so much has been taken from me. And it’s difficult to see the light at the end of the tunnel because the tunnel keeps changing with each setback.
I’m scared.
This has been a post.
Julian Arancia said:
I am so very sorry about all this. There’s really not adequate words except to say that I’m sending you healing thoughts for this all to sort out as best it can as quickly as it can.
It is normal to be scared and good that you’re letting yourself feel it. You’ve been through a true trauma both physiologically and psychologically. What you feel is understandable and normal in my opinion.
As you can, I hope you’re able to focus on mental and spiritual healing as well as physical. I think your post is a good step in that direction.
But allow yourself time and space to feel and take this all in. This is a life changing event so fear, anger, sorrow…all those things will come up naturally.
cherirae said:
You are deeply loved – feel the strong (but gentle) embrace of your community ❤
Abby - Bright Yellow World said:
Oh, honey, my heart hurts so much for you. We all have moments when we give more, and moments when we need to receive more. As hard as it is, I encourage you to welcome receiving more from the people who love you right now. You’re in my prayers, lovely.
Susan D'Angelo Baldridge said:
You are wise to write about your fear and true feelings! Writing has always been your coping mechanism whether it’s to spin one of your beautiful yarns or tell on yourself (thinking of the Blue Bonnet story) or uplift the rest of us! I Hope and Pray we can help uplift you for a change Bright Beautiful Alida!
If it helps you truly are in my prayers.. Your mom too!
I love you Alida!
Sue
Erica said:
Oh, honey. I’m so sorry. I wish I could make it better. 😦 But I’m here day or night if you want to call/text/chat/email. I love you and miss you and am praying for you!
Terrell Meek said:
Alida, this is scary shit and you are so, so brave. Never think you are a burden to anyone, ever. You are loved by so many. We don’t know each other that well, but I’m thinking of you, sending you all of my good, healthy thoughts, hoping and praying that you will be well soon.
Sizzle said:
If you weren’t scared, I’d be worried about you. It’s so normal given everything you are going through. I’m scared for you! Being sick is a humbling roller coaster experience. It absolutely sucks, to put it as uneloquently as possible.
Your mom is there because she loves you. Mom wants to take care of us. Will is there because he loves you. Boyfriends want to help us. Your friends and family are all here for you because we love you. Yes, you’re not yourself right now but we can hold the hope that things won’t always be this way for you and be brave for you when you can’t muster it and hold your hand when you’re afraid. We can’t fix it but we can show up for you. You did that for me during my cancer experience. You did that for Kim. You’ve probably done it for a lot of other people I don’t know about.
Facing ones mortality is fucking brutal. I don’t see the world the same way as I did before cancer and that’s a blessing and a curse. I absolutely hate this for you and think about you every day, wishing I could speed up time or fix it for you.
I’m glad you’re writing about it- that’s your outlet and you need to express yourself. You might not be able to run or cook or eat more than 2 spoonfuls of veggie soup right now but you can write. Keep doing that.
I love you.
Beth (@bethaf) said:
Ah, as a random reader from Canada, I feel strange commenting, but I would feel weirder still if I didn’t, after your last couple posts.
This is a terrifying story and I am sad that your health has taken such a sharp turn. I think your writing is beautiful even in talking about these emergencies and fears – please keep writing. And know that you are cared for and thought of by many, many people.
Susan Preston said:
Hey there cutie-patootie, I recommend throwing things. Futhermore your Mom and William are stubborn rocks. We love you! Keep writing.XXOO
Noelle Sierra Smithhart said:
So much love for you, beautiful lady.
Drew said:
We’re thinking about you in Alabama…Love ya, mean it!
Ev said:
We DO love you! I wish that Westley and I could just fly up there and make you smile for a short time. I will totally flush your drains!
I love you so much. You know my hospital story, and as terrifying as it was at one point, it’s got nothing on this. I couldn’t imagine.
You are one of the strongest, most beautiful souls I know. You got this.
P&B said:
That all sounds so terrifying, Alida, and I’m so sorry you’re having to face all of this. I am praying for you and thinking about you daily!!! Hang in there, know that you are loved & prayed for.
P&B said:
From Bethany by the way… don’t know why it put my name as P&B?
Meghan Lewis said:
Alida – you are so brave. I realize we don’t know each other very well, but I just wanted to reach out and join the voices sending you love and encouragement. This is an incredible journey you are all navigating…..I know Will loves you and wouldn’t be anywhere else but supporting you – just as you would do the same for him! He also has the support of every member of his huge extended family. We want to give both of you strength and love and all the mental and emotional endurance you need to carry you through this. Meghan
David Preston said:
You have the strength to write this, and you have the love and support of your extended family and so many friends and even some people you do not know who are moved and inspired by your words. You will survive, you will thrive, you will run again, and you rock! iWill’s Dad
Jill Lightner said:
I know a lot of these feelings first hand and they are terrible. It will take a long time to trust your body again. Panic attacks are a reasonable response and writing this was a good idea. Talk to a counselor? If possible get some lovely foot massages and mani/pedis, to get. some nice feelings back into your physical self. And I’m so sorry for all this shut. The life you want is waiting right there for you once you can take it on again.
wireharp said:
Alida we weave our heartfelt prayers for comfort and healing through with everyone here. And, yes, throwing things can help too. Much love to you and iWill and your mom. Alex and Kevin. Thank you for telling this story in such a strong and clear way. It is actually helping me work through some of my own story….K.
Jill said:
I met you through someone who knows someone who knows you so I don’t know you at all but of course feel like I do because of your amazing writing. Keep doing it if you can! It’s powerful and helpful for you and you should keep doing anything that’s powerful and helpful whether it’s throwing things or pedicures or talking to a counselor or watching your favorite movie over and over. Do not worry about being sunshine but rest in the love that so many people have for you. It’s hard to rest in that when you are a doer but know that it’s everyone else’s turn to do. You rest.
Miss Devylish said:
Ahh my lovely lovely Shine – listen to all that support and love coming thru and I know from your post on fb today, it’s getting absorbed. Do you remember how we came up w/ your nickname? Ok.. I kind of don’t.. but I’m pretty sure you helped me and it’s because you’re such a shiny light in my group of friends. And when that light feels dimmed, just know you’ve given your family and friends so much love and support that we wouldn’t think of doing anything else but giving you that in return. This is what you do for those you love.. and what YOU have done and what YOU need now. We are all here.
This simply stinks. It really does. I hate it for you, I know everyone around wishes they could make it stop and make it better. But you are brave and strong and even feeling fear, vulnerability makes you shinier. I can’t imagine this pain you’re dealing with, but I’m ever so sorry – and you will come out of it. I know it. We’re all here for you. I hope you can feel it. Today, tomorrow.. and continually. So much love to you, Will, kitties and Maizie-moo. xox
Cindy Roosma said:
Alida, I know you don’t really know who I am. Your mom and my husband and I go way back to our Air Force days. You are loved by your mom and obviously Will too. They and all your other friends and family are here to support you. The problem is not only the horrific medical complications and unknown that you are facing, but unfortunately you are having to deal with a dose of your own mortality. I have heard that this often hits us when we have faced a serious crisis in our life.
I would love to give you some great inspiration on how to deal with all of this, but I can only say that you are doing the best you can to cope with all this stuff. I agree that writing and talking about all your fears is probably the best dose of medicine that you can give yourself. Facing fear is probably one of our greatest challenges.
Remember all the people that surround you everyday love you and want to do all they can to help you get through this and on the road to recovery. I think that you are a strong person to recognize your fears and face them head on. Remember everyone needs a little help sometime and friends and family are there for us to lean on. They never mind lending a hand or shoulder whenever you need it.
As much as this sucks you are a strong person and you will survive through all this medical drama and come out way stronger on the other side. For now the race you are running is for you health instead of racing to beat a time clock. I bet in another 6 months you will be back running races. My prayers are with you for a speedy recovery! (No pun intended on “speedy”.)
Fifilala said:
Alida, I’m so very sorry that you are suffering like this. You are such an optimistic, sunshiny person usually, one of those people who embrace life and live it to the full that is must be doubly awful to be in your situation.
But, you have people around you who love you and will care for you. You have doctors who are trying hard to fix you and you have a rock-hard will to live your life the best you can.
You will get through this and come out brighter and better. Sending all the very best wishes for a speedy recovery.
Peach Fuzz said:
You are a champion, and I love you.
steve said:
I know this was years ago, but how are you now? Iam hoping better.