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Monday, March 14, 2016

Songbird

As a note, I have been working on this particular blog post for a while, and there have been several drafts. I appreciate your patience while I wasn't posting anything recently. 

Looking back, it is a tremendous thing for a sixteen year old to rationalize her mother's death as "the next step" or "expected." Those phrases may be logical, but they don't fix the psychological damage that comes with that situation. The same can be said for explaining away her liver damage with reasons and medical facts; not, at least, when the result of said damage was years dying in front of her child; sometimes more quickly than others. This truth is probably why I am such a disengaged individual from my feelings. Could anyone short of Sybil watch their mother die slowly without ending up worse for the wear?
I guess I should really start this with a preface (can I even call it that when it's the second paragraph?) I am writing this article because what happened to my mom is a reality that can belong to any of us all too quickly when dealing with chronic pain.  We are tested every 3 months to check liver function, ANA's, CBC's, Sed rates, C-Reactive proteins, and hosts of other weird sounding measurements to make sure nothing in our body is failing as a result of the essentially poisonous medications we take. I want everyone to realize that the doctor's do this, not as an annoyance, not as an extra copay to collect, and not just for you. This is for the well being of everyone around you, everyone who would be affected if your body was overtaken by the side effects.  So read this with a grain of salt; it is not unbiased, it is from the eyes of a sixteen year old girl who had her heart broken. But I think that bias is necessary sometimes, to see exactly what gets left behind if things go wrong.

When I was about 8 years old, my mom hurt her hip. It was January, and I remember that because it happened while she was vacuuming up the confetti from our New Year's celebration. (I was sick, in case you were wondering. Slept until 11:55 and they woke me up to see the ball drop. I couldn't even drink sparkling apple juice for fear of yakking it back up. Story of my life, and I was only 8.) The doctors found her muscles and tendons to be fine, so they did a bone density scan. I believe the diagnosis was early osteoatrophy, but hey, I was eight, like I really know. The best course, they said, was a total hip replacement. And please, bear in mind that this was in 1992, the technology was still evolving, the process was bulky, painful, and incredibly slow. I remember her crying out in pain every time she tried to get off the couch. She needed help to do anything, because movement without your hips is impossible.
(I feel that this is as awkward a time as any to tell you that my mother had a drinking problem when I was younger.  In all fairness, we're Irish, so I don't know that it was a "problem" so much as a "lifestyle choice". But my history with self medicating also doesn't belie me as a credible critic.)
Because of her history with substance "abuse" (or, in my world, "grown up Tylenol") she refused narcotics to help with the pain.  I cannot stress enough that this recovery was not like your grandma that had it done last year- the process of fitting prosthetics was not as refined, they were uncomfortable. And the hip was so major a surgery that they rarely went in to replace it a second time if there was discomfort. You can imagine that, in any surgery where part of your frame is sawed apart and yanked out (she was awake for that by the way) there is a fair amount of pain afterwards.  There's a reason they prescribe narcotics- and it's because your standard acetaminophen won't begin to touch the pain you're facing. Desperate, she took more and more Tylenol hoping to be able to function without crying. After the stress on her liver by the "over" drinking, this was just too much; her liver began to fail.

So at eight years old, my parents sat me down and told me that my mom would be put on a list to get someone else's liver when they were done with it (what a politically correct way to phrase it, much better than my "hoping for someone to die), they showed me the beeper, which was so tre chic in 1992, and then told me if she didn't get a transplant she had 2 years to live. I was eight years old. And I was expecting my mother to die by my tenth birthday.
Ok, maybe it wasn't as bad as it could have been.
But this story isn't totally sad; she didn't die before my tenth birthday. In fact, she was there to plan my Sweet Sixteen. For that, I can never, ever, stress how grateful I am. We didn't have to have those 8 years, those were a gift.

And yet, the story gets harder to tell from here.

When I was 15 Mom started needing blood transfusions.  They could see that her red blood cell levels were low, but her platelet count seemed fine, so there was no problem with production. When they drained a distended abdomen they found, not blood, but just fluid, and they weren't sure where it had come from.

Let's all be on the same page that I was in the middle of my best act yet- the snotty teenager. And I played the part to a tee. Every medicine she needed help getting, every time she fell and needed help, every emotional scare; Every last one of those irritated me to no end. How dare she; she who had tried so hard to conceive me, worked so hard to keep me healthy while I baked, had nearly died multiple times including child birth that went on for hours and hours and into another day, how dare she inconvenience me by asking me to hand her her cane. Or carry the laundry upstairs. Or to feed myself. Just rude, that's what all of that shit is. And I will never make my kids be burdened by me this way. (cut to 15 years later when I'm doing the same to my husband. Can you see my sheepish face eating humble pie?)

Sometime in February 2002 things started getting really bad.  I don't know the details, because I was too self absorbed to get much info, but I know that she needed another blood transfusion. She didn't come home when it was finished, however. They needed to watch her, something about her testing was alarming. Being freshly 16 and so busy preparing to audition for the lead in the school play, I had very little time for empathy. I remember the day I found out I got the lead in the play, because dad picked me up, which was not the norm. I ran over to the car (as best I could, I was wearing open toed strappy chunky heals that were a size too big, so it was rough going. Don't you love those early 2000's fashion trends?) "I got it! I'm the Bride, it's my first lead!!" to which my dad responded "that's so great to hear, we knew you could do it."  Then there was that silence. That silence we all knew. And I heard the next part of our conversation in my head before it even happed. "Where's mom?" "She's in the hospital, we're headed there now." "Is she ok?" "They're running tests on her now." That conversation never changed.  So I started learning my lines while sitting in her hospital room eating apple pie (the McDowell Hospital has the BEST apple pie) and complaining about wanting to go home. Mom just slept or watched TV, what was the point in my being here? I can create this same situation back home, too, minus the smell of death.

And that is the daughter I was that night when I picked up the phone. When I answered it was Mom, slurring her words and seeming disoriented.  I assumed she was just drugged up and thought "how inconsiderate to call your daughter sounding like that. Like it isn't hard enough on ME already." She asked a few things about my day, about rehearsal, about my friends.  I was a snot nosed brat the whole time. My side of the conversation probably went "Fine. It was fine. They're fine I guess, I don't know."

If I have one regret in this world it is that conversation.

She asked to speak to my dad, and I was relieved. I handed the call off to him and went back to watching reruns of "Friends" and talking on the other line with a good friend who was watching the same episode. A little while later dad came back in and said that we would be leaving first thing in the morning for Chapel Hill, NC.  Mom was being E-Vac-ed to their RICU overnight. I would miss school and go with him. No questioning it. "Can we stop at Barnes and Noble, I have nothing to read" "Fine." The next morning was foggy in the mountains of NC, we were in the Smokies, after all. As I was packing a thought occurred to me, and I turned to my dad, "Will mom want to ride home in the back seat so she can lay down or will that be uncomfortable for her leg?" My dad was quiet for a moment, ever the man who thought through every syllable before speaking, he said sort of hushed, "Kathleen, if your mom doesn't get a liver she won't be coming home. "

All I wanted to know was where should I sit, and instead I found out my mother was near death.  But still, I could convince myself this was an overreaction by people.  After all, the last prediction had been off by 8 years. Still, I was scared, and I knew that mom must be too. So I went and got her rosary, made from ashes from her older brother Billy. She always kept it close. I packed that to make sure and give her.

It's a four hour drive from our home to Chapel Hill, not including the stop at Barnes and Noble so I would have books and leave dad alone. I remember the exact way from the parking lot we used to the RICU unit. Through the lot to a breezeway which we crossed and which came out in front of one of the big entrance. "Mom's not coming home with us." We entered the sliding doors (part of me hoping for a door into an alternate reality where my mom wasn't sick.) And she wasn't sick; she was dying. We walked to the elevators and hit the up button. We waited while people who seemed upset walked out of one. We got on and hit the number for the RICU floor. When we got off the elevator, there was a Wendy's to my right. A fast food joint, on the 4th floor of a hospital. I had been going to the wrong fucking hospitals before that point. We turned left instead and walked to the end of a corridor, the left across another indoor breezeway connecting us to a new building. Down that hallway somewhere was the RICU on our left. You had to wash your hands according to surgical protocol, and once you'd done that they opened the door from the inside so you didn't touch it. You were gowned and gloved in the antechamber. These were all patients who were one sniffle away from death, and those nurses weren't taking any challenges.  I saw a mother with 3 young kids sitting in the family waiting room trying to entertain them without crying. She had been denied access to a family member because of the kids.

The first time I saw her, I thought I wanted to leave immediately. Most noticeable was the respirator she was hooked up to, letting out pneumatic puffs and hisses in a rhythmic time, making me think I was living in Steel Magnolias for a minute. But just as noticeable was her skin- it was yellow.  Like the color your snot is when you're really sick and junk is just constantly running. All over.  Eyes, fingernails, everything. It was the most horrifying thing I had seen up until that point. But I became acclimated. Because, after all, she just needed a liver and those are donated all the time, so she would be fine.  I settled in to pass my time with my unconscious mother.

I remember an argument with my dad when I tried to watch Boy Meets World when we had just passed Golden Girls. He said it was her room and that's what she would want to watch. I said what does it matter and, I swear I thought he was going to cry, he said it matters because she might be able to hear, so we should give her what we can. And so I turned my back on everyone and read my book.
Teenager.
This marked the beginning of her third week in the hospital. Over the next two weeks she improved a lot, we went every few days and on weekends, I missed a lot of school. She began to open her eyes, she could recognize people and understood what was going on. We seemed to be hitting stable. The yellow was still there, but, we knew there was only one way to fix that.

Good Friday, my dad drove out and left me home, sick with a head cold.  If you think that I would be allowed within a 100 foot radius of that RICU then you've obviously not watched enough "House". I stayed home and tried to decide if I should have my guy friends come over (not because they were guys, but because they were my best friends. Besides, they were gay they just didn't know it yet.) Halfway through the day I got a call from my dad saying that he was coming home and to pack, we were leaving at 6 the next morning. I did as I was told, but I didn't understand, because I was still sick.
When he got home he explained that mom had been better. They had taken the breathing tube out and she was able to talk. They moved her out of RICU and into a step down room. She could answer questions. But then, very suddenly, she started acting disoriented. She didn't know where she was, she didn't recognize him. They quickly moved her back to RICU and had told my dad to get me there as fast as possible, the liver was going fast. When we stopped for a rest area, the doctor called my dad again and just said "Hurry, we can only hold her a bit longer." I started thinking about things I had heard on TV. What if my liver could help her? They just needed part of it, right?

When we got to the hospital we walked in faster than we ever had. We scrubbed and they told us we didn't need to gown, but still made me put on a mask. I remember, vividly, the nurse who was leading us in turning to me and saying, "Your mom is in pretty bad shape, I want you to take a second to prepare yourself because this is going to be tough." and (snotty teenager alert!) I just scoffed and said, "I have done this before." I was wrong.  I had seen something completely different before. Before, I had been seeing sick.  Now I was seeing dying. And it was heart wrenching. I stood there staring at her, while the doctor talked to my dad. I knew she must still be jaundiced from the liver failure, but you couldn't tell because she was so blue from oxygen deprivation. One machine was suctioning fluid out of her lungs (yellow) while another breathed for her. Her body was completely unresponsive to anything, sound, touch, even startle. My mother's body was there, but Mom was gone.
They had come to the decision that even if we waited for a match there would be brain damage from the respiratory issues, and so dad felt we should turn off the machines.  "What about my liver?" I said it so quietly I was second guessing if it had even been out loud. "Well, you might be a match, a partial transplant would be an option..." and my dad cut in, "No. No, she says in her living will that she won't take a donation from our daughter.  No testing or matching. She refuses it even if its perfect."
I didn't know what to say.  My Mom had known that I could possibly save her, and instead of asking me if I thought I was ready, she had made the decision for me? No ifs, ands, or buts about it? And no talking back because she was essentially dead. Easiest argument with a teenager I've ever heard of. My dad then turned to me and said words I will never forget. "I think we should turn the machines off, its what she wanted in her will, but she's your Mother and I won't take her away from you if you aren't ready. You tell me what you want to do."

And there it is.  The cheese stands alone. I stood there a sixteen year old girl deciding the fate of my mother.  Was there a chance for a miracle? Would she be better even if we did get her a new liver (and now kidney's as well because the stress had caused them to shut down) was I dooming her to a life of learning how to walk again, how to feed herself, of adult diapers? Would she want that?

"Turn them off." And then I went numb.

I remember asking for a priest to be called to perform Last Rites. He used the rosary beads from Uncle Billy's funeral. And I remember sitting in the family waiting room. On the TV was news coverage that the Queen Mum had died that day. The Queen of England and I had lost our mothers on the same day. I started crying. A nice stranger handed me tissues and asked if I wanted him to get me a refill on my fountain Sprite (Wendy's, you convenient bastards.) He asked if we were all going home, I said no, and he said I'm very sorry, and left me to cry and watch my grief mirrored on the news by the Queen of England.

It isn't like in movies or TV where you say pull the plug and they literally do it then.  There's at least an hours worth of paperwork to fill out that says they are not liable for the death of your loved one. I'm sure there's also some sneaky clauses in there, but the end would have been the same for me so I didn't read those. When it was time, they turned off the respirator and the pump, they kept her sedated so that she wouldn't feel anything. You could tell the moment they turned off the machines that it was over. Her body had given up, and it looked similar to someone who just ran a marathon laying on the couch for the first time. Just utter exhaustion but the race finally over. They had asked me if I wanted to say a few words to her before she was gone, so I held her hand, looked at her with the most searing pain I have ever felt, and all that could come out was "Oh, Mom."
After she was gone, dad kissed her forehead saying he loved her, and tried to tussle her hair while he said "we're gonna miss ya", but instead of tussling her hair, it just shook her whole head. It was eerie, and I just wanted to be out.
The process itself takes a lot longer than they show on TV. It was probably short for us because her body didn't fight, but they extubate the patient and let their body try everything on its own, it takes time. But just like the marathoner, her body had no fight left in it.

Also unlike in movies and TV there is paperwork to be filled out AFTER the plug is pulled. So I went and waited at Wendy's and couldn't help but remember that Dave Thomas had died not too long before then. I can't eat their Mandarin salads anymore.

When we drove to the hotel we started calling people. Dad the family, and me the family friends.
I had gone outside so we wouldn't be talking over each other and was talking to one of my friends when I noticed a car drive by that looked familiar and the people inside were staring at me. (Listen, I had terrible vision even then) and then they drove around again, finally stopping. I realized it was my Aunt and Uncle from Georgia, they had come up to see my mom but got there about 30 minutes after we had left. My Uncle found out from a nurse that my mother had died within hours of his arrival. But they did know which hotel we were at so they drove straight over.  The looks on their faces will never leave my memory.

Her older brothers had to bury their baby sister. Her husband was left with a young girl to raise. I'm not saying this in a blaming way. It is only to show you how many other people were poisoned by those medications. I am a stronger person because of what I went through, and my father and I are closer than most, but there were a lot of hard times before that.

I know when you're hurting it is tempting to take just that one extra pill. Or when you feel like you've developed a tolerance for something to start taking a little more over time to fight it. But please, don't change the way you take a drug without talking to your doctor. It is very dangerous, and it doesn't affect just you. I told this story, which is so intimate for me, because I feel like it is easier to understand the dangers when it isn't just you who feels the affects. You feel the pain from the failing liver or kidneys, but your children feel the anxiety of wondering if you'll get your transplant. You feel exhaustion as your body starts to fatigue and slow down, your children feel fear that something has happened every time they get a phone call at school, or a different person comes to pick them up. Everyone feels it. And that one more pill might relieve your pain temporarily (or more often only take the edge off) but it causes a pit in the stomach of everyone around you.