The Horovendoush Day

 In the story Alice in Wonderland, the day the that the Red Queen takes over Underland is called "The Horovendoush Day".  It is a day of total devastation and the moment in time that all of Underland is subjugated to the tyrannical reign of the Red Queen.  Anyone familiar with the story knows of the cruelty of the Red Queen and her famous retort "off with their head!"  My OCD and the Red Queen have a lot in common.  The constant dismissal of the most important relationships and people in my life, because they can cause the most damage to me, has left me nearly completely alone.  If I am up here as a prisoner in Crims Castle then the pain and suffering can stop; yet it doesn't. The illogical and despotic rule of my life by an inner voice cruelly telling me that it was right again and I am unworthy of love is maddening. I cower in fear of taking the risk only to be robbed over and over by a draconian queen dressed in hearts masquerading as a protector of love and all it stands for.

When my husband's brain tumor returned after 22 years in remission it came back with a vengeance; angry by the hibernation. Stage four glioblastoma is not for the faint of heart. We had been together for a few years but, had only been married for 4 months. I never once waivered in the complete faith that he would overcome yet again. I became an expert in everything about glioblastoma, brain cancer, treatment options, and became a walking medical encyclopedia on every topic. I learned to read his scans, what to look for, and what it all meant.  I became his champion, his advocate, and his caretaker.  I gave my all, 100%, with nothing left for myself.  The anxiety of being the wife to a very sick husband drove my compulsion to find a cure; I aged 10 years in the 3 years he was sick. I would stay up all night reading medical journals with obscure case studies about the 3 people in the history of human existence with a random collection of symptoms. I grasped at straws. 

I was there to catch the mistake when his doctor ordered glucose instead of saline that would have sent him into diabetic shock.  I was there when I faxed his 80 pages of medical files to every cancer hospital in the state to transfer care. I was there when I called hospital after hospital pleading his case and begging for appointments.   I was there when I drove him 5.5 hours to inpatient chemo once a month with the car packed with special linens and down pillows and duvets so that he could be comfortable for his treatments and feel less like a lab rat.   I was there when the doctor wanted to use me as a science experiment to see if my immune system would fight his cancer with a direct blood transfusion.  I... was... there...  Unwavering, dedicated, positive, and.... completely in denial.  I refused to see how tired he was and how done he was with his fight. His cancer was shrinking, each treatment brought bigger gains, and he was winning the war. 

He improved enough for me to go out and get a job, which I negotiated a 3 hour break in the middle of my day so I could come home and bathe him and spend time with him. I also negotiated a long weekend once a month so I could take him to his treatments.  My parents moved in with us and would prepare his breakfast and spend time with him while I did my morning shift and I would come home and help him in the shower and eat lunch before I returned back to do my second shift, no one in the office any wiser to what was going on at home. Then tragedy struck.  When I came home one night from work he was acting really weird talking about some lady that had been there earlier in the day.  I didn't understand what he was talking about.  He started to get a fever and my mother said he had gotten a little sick earlier in the day.  Little did we know that he had inhaled some of his vomit.  As his fever increased, I told him we needed to get him to a hospital.  He refused. He insisted that I not call the ambulance.  Finally, in the middle of the night I had enough of his refusal and I tried to get him up and into the car.  He collapsed on the floor and he was too heavy for me to get him up.  I called 911 and he was taken to the emergency room.  I didn't know it then, but it was the beginning of the end. He ended up getting airlifted to a larger hospital a few hours away and he spent the next 18 days in the ICU with gram-negative bacterial pneumonia. He woke up once a few days after his admission for about 8 hours.  It was a giant sigh of relief and he was transferred out of the ICU.  He ate pizza and had a Coke. We talked. 

He had a lot to say.  Most of that conversation revolved around the topic of his desire for me to move on with my life and meet someone and be happy.  That was all he wanted for me; just be happy.  Find love. Don't live life looking in the rear view mirror. I told him to stop.  I told him he was going to make it through this.  I agreed when we were 90 in the old folks home that I would 100% look for someone. And then, without any explanation medically, he started to have convulsions. He returned to the ICU and never regained contentiousness. I sat in a waiting room chair beside his bed for days.  I barely ate. I massaged his feet.  I bathed him. I talked to him. I seemed to be the only one that could calm the convulsions when they came.  I would stand at his bed and rub his feet and talk to him until he was peaceful again.  Then, the fever started to spike.  The nurse thought the thermometer was malfunctioning.  They kept sending in different techs with different thermometers.  His temperate was over 112 F. We started packing him in ice.  I spent 24 hours straight, without rest, changing his ice packs every 10 minutes.  Refreshing the ice, changing the bags, until the next morning when it came time for rounds.  They told me he was no longer responding to stimuli and that the fever had done too much damage, he appeared to be brain dead, and wouldn't survive.  They started trying to stabilize him. One IV machine after another were attached in a grid behind his bed; 15 or 20 medications all at once.

They brought me into a conference room, sat me in a chair, and told me I needed to make a decision. It was on me. His mother and father deferred to me. His cousin and his wife, both medical professionals, told me they didn't have an opinion. My parents looked on and the hospital staff just stared at me.  I finally said. "What do you want me to say? Kill him? Pull the plug? What do you want from me?" At the end of the day, his medical directives said not to take any extraordinary measures... we had taken a running leap over that line weeks ago. So, we all gathered around this bed. His mother on one side, I on the other, with the rest of our family around us.  We held his hands and they started to turn off the I.V.s one by one by one, he took his last breath, and died. 

Here's the thing about OCD. The intrusive thoughts, you can't control them and you never know when they are going to show up, but you can be sure it will always go straight for the thing that means the most to you. Not a day has gone by in the last 13 years that I don't get some kind of intrusive snippet from those 18 days. Sitting in the waiting room, driving 110 mph down back roads trying to get to the hospital when he was airlifted, the anxiety of not knowing if he would survive the flight... all of it. It's been 13 years and it is as fresh a wound as the day it happened. The intrusions always come when I am the happiest or feeling the safest. It's an ever-constant reminder I can't get too comfortable or trust that things are good; It always has to remind me "remember that time you let your husband die?" 

I never, ever, thought he wouldn't make it. Never. Ever. Never ever ever. But he didn't, and I had to move on in the world as a 35-year-old widow missing him every day and carrying the guilt that I wasn't good enough, smart enough, or just enough, to save him. OCD beats me up every day for failing him. Those three years and those eighteen days changed me.  It sent me down the rabbit hole.  I haven't been able to handle stress the same since.  My pathological glass half full approach to life and my ability to naively live in complete denial that something bad will happen.... that is gone. It's all been replaced by flight in the face of stress and confusion beyond reason when my anxiety gets too high. I have never been the same.  I have been punishing myself for not finding a cure that his neurological oncologist with five medical degrees didn't find either. I'm not a doctor, or a nurse, the last time I took a biology class was in high school and I have been flogging myself for being unable to save him for over a decade.  That is what OCD is. It goes after the things that are most important to us.

With ERP I have had a breakthrough.  Last night I did an exposure around all of this and I feel 180lbs lighter today (that's about how much he weighed).  I looked at his picture and I spoke to him and started to release the guilt. The release has been epic.  I have cried a lot. I am sitting on the hill.  Radical acceptance means that I will not give in to the narrative that any of this is my fault.  I did the best I could and sometime that just isn't good enough.  This is a really hard thing to process when you have a voice in your head telling you that you must be perfect all the time or something bad will happen.  It uses the example of your worst nightmare come to life as a reminder of the time you failed to ameliorate to perfection. This is what OCD does.

-Alice