I didn’t speak at my mother’s funeral. I don’t regret it – I can’t think of how I could have done it in a way that wasn’t just about me. This post will be mostly about my own experience, but it becomes about her too. What I want is to express just how incredible my mother was, and how unexpected this experience has been. Not just because how she died seemed very unexpected, but because none of this has been what I expected.
No movies prepared me for this – ironically I think they tend to focus so much on the drama, they miss just how confusing and profound a thing it is. My counselor lost his mother at an early age and said something that resonated with me because it sounds dramatic, but is just honest. He said, “Not a day goes by that I don’t think about her. Usually when someone talks about their mom. It reminds you that you don’t have yours.”
What I failed to realize in the movies is that the loss of a close family member becomes a part of you. It doesn’t have to be bad per se. It just is. It’s like the scar running down the side of my left thumb from a bad wood carving accident, or the tip of ring finger my dad lost trimming the bushes. It’s a part of us.
I do want to state that this post is going to get very detailed about what happened the night my mother died. I think it’s important to talk about, but it is fairly traumatic, so please don’t read it if you don’t want to know. There is plenty else in here, so skip ahead.
We’re going to start with a very quick summary of the first time my mother had cancer. Mostly so you understand how amazing she was when it came back.
Cancer Round 1
My mother was diagnosed with estrogen-positive breast cancer when I was in high school. I’ll never forget what she said about her visit. When the doctor told her the diagnosis and gave some details they said, “You probably didn’t take in a work of that, and that’s okay.” And my mom said, “Oh no, I got all of it – how do we take care of it.” Because my mom is a fixer. And she was damn good at fixing.
I won’t go into too many details. I honestly don’t remember most of them because as a teen, that was very hard to go through and I’ve shut most of it out. And on top of that, my mom did everything she could to shield her kids from it. I have mixed feelings about it, but honestly it was traumatic enough so I don’t really care.
My mom received chemo treatments and those were the worst. It kicked her ass every time. Her hair fell out and turned gray. I have never before or since seen my mom look so sick. She looked 80 and she was 49 or something.
She fucking hated it.
But she got her chemo done, had surgery (and reconstructive surgery), somehow dealt with the emotional impact of having no nipple (which for me is insane – I’m not sure I could do that well personally) and we all moved on.
The Next Bit
Lots of things happened in the next seven years. Some of the highlights for me was that I got married to Hannah and moved out of the role of child and into the role of adult son. Obviously we hit some snags that I’m sure both my parents will deny. But honestly, after about a year of marriage I had the most supportive and amazing parents (and parent-in-laws) anyone could ask for. It was an interesting year with lots of change, but it turned out simply amazing. In ways it is difficult to express. How do you put into words the fact that you know your parents are proud of you, respect your choices and simply want to be around when you’re ready for them?
Hannah and I had a rough start of it ourselves. We both graduated in the spring of 2014. By the end of the summer we had moved to Chattanooga, TN where I worked at Noodles and Company and Hannah worked in an abusive workplace at the Times Free Press. We left in December with no money. Hannah had gotten a job in Lafayette, IN at a newspaper and I had nothing – just a need to follow (we were engaged at the time) and get the hell out of Tennessee.
We moved into our apartment in Lafayette just before the end of the month. By the 31st we didn’t even have internet yet, and I had told my mom we weren’t able to make the hour trip down for the yearly New Year’s party. So she drove my brother and cousin up to see me. She took me to lunch, to get internet and – I will never forget – she bought us a whole chicken (at my request). Looking back that was a fairly cheap request, but it meant the world to me. It was our New Year’s meal.
I finally got a job in HR for a staffing company. It took me six months to know I hated it. It wasn’t until this past December I was able to leave.
There are few things I am more proud of then telling my mom that I got a job as an Application Developer, that I was following my dreams, and that I was finally quitting the job I hated.
Yes, I am endlessly thankful that my mom was able to come to my wedding (and endlessly sad that Adam will not have that chance). But I am most proud that I was able to succeed at following my dream – because my mom was instrumental in teaching me how to do that.
Sometime in early/mid November, my mom told me that she was getting a pottery kiln. This was after a few years of being offered (apparently the same kiln) from different people and refusing (because it’s a pottery kiln. It’s not like it’s a chest of drawers – this thing is an investment in space and resources). I’ll never forget what she told me about it. She said, “It just keeps coming back to me, so I figure I’m meant to have it!”
So, we drove about half an hour into rural-ish Indiana to a recently divorced woman’s ex-husband’s house (honestly, I’m a little unclear on that one) and proceeded to load up Hannah’s Jeep liberty with a three-tiered electric pottery kiln, shelves, a spare heating wire and an extra (oversized) lid. The bottom ring of the pottery kiln, we were informed, was not working. After seeing the control panel for it (which looks like a mouse nest, if mice liked to sleep in rusty wire), neither of us were surprised.
It looks like that kiln is mine now. For some reason, that really scares me. I’m not sure where we’re going to put it, and to work it needs an outlet wired for a dryer. But how can I refuse it? It was meant for my mother, and pottery was something that over the course of the last two years, we have shared.
You see – I’m actually pretty good at pottery. I got really good back in high school and have made some passing attempts to keep the skill up over the years. My mom has always been fascinated by it, and much like myself, is not in the habit of denying herself activities she is interested in. So one afternoon a few summers ago, I taught her how to throw pottery.
She was terrible.
And she loved it.
Over the last few years she took classes at the Indianapolis Art Center, just about every semester she could afford it (whether in time or money). She was about to start again this spring, despite the fact that she had no money for it (after having been between jobs for about a month and a half) because her love for it was so crystal clear, they were willing to give her a scholarship for it.
My mom got pretty damn good at throwing pottery. There are some pieces she made that I could not do, and that I would happily display in my own home.
She was wonderfully obsessed with it too. Just about every call I had with her – that’s what we would talk about. To be honest, half the time she would say things and assume I understood because I’d done it before, and I would be completely lost. And I really don’t think she cared. She loved it. And I loved that she loved it. And I love that I have that in common with my mother.
And I sigh after all that and think – what am I going to do with that kiln, man?
Timeline/My Week Off
One thing that I’ve found hard to quickly express is what happened. A lot of people have asked if mom was sick for a while, if it was a surprise, etc. It’s a weirdly complicated answer. So here’s the timeline, and some of my thoughts about it all.
In January of 2015, my mom was diagnosed with metastatic breast cancer (stage 4). They had found some bits in her bones and lymph nodes that were luckily small and they were able to treat them pretty effectively with a new kind of oral chemo medication that has many fewer side effects (from what I could tell, the only obvious side effects were fatigue and depressed immune system). So…really cool actually. And my mom went HAM on health at that point. She really didn’t want to be on chemo – so she switched to a new (and better, in my opinion) oncologist who was more open to alternative medicine (especially dietary-change-based medicine).
Basically, my mom took classes in Ayurvedic medicine for personal practice, continued going to yoga, started juicing (and enjoyed it? Idk, she did though), and got really into tea. Like more than ever before. I went over to their house and was faced with a tea selection I had never heard of (and it was all good, oh my god).
Anyway, to make a long story short, my mom kicked ass and decided not to live like she was sick. She wanted just to live out her life in the best way possible. She even started drinking wine again – which personally I think was the best choice she ever made (aside maybe from taking up pottery). Because she loved it. Actually, my own love for wine came from her – which I know because I love all the same kinds of wine she did. She was a Cab/Merlot/Malbec lady and honey, so is her son.
I started seriously talking to my counselor about fearing she would die sometime in August or September of this past year. Because even though I had forgotten about it in large part, it isn’t actually something you really forget. And some of her cancer markers had started to subtly rise at that point, so it was fresh on my mind. It was certainly concerning, but while her markers had gone up, her scans showed no changes. So it was pretty much okay.
It was cool for me to talk to my counselor about because you don’t often realize just how much that affects you. And it was. And that was one of the first interactions where someone called me out on wanting to process and unpack emotions. He said, “Sometimes things are just a boulder. There’s nothing to unpack, it’s just a big, heavy thing.”
Sometime, I believe in October, mom’s liver enzymes showed elevation. It was again, concerning, but not terrifying. They were still in a normal range, if high, and we all figured that shouldn’t be all that surprising because she was on chemo. Even if it was Chemo Lite, it’s still poison.
October was also when my mom’s job contract ended and she started looking for another job.
November I helped my mom retrieve that kiln. And she went to Thanksgiving with her family (and I was there too, and that was just a blast). And then she flew to California to be with her crazy, wonderful goddess ladies. That’s a whole story in and of itself, where through some series of miracles she got her entire trip out paid for, got housing, etc. for pretty much free.
From that trip she got a job interview in New Jersey she flew to. Then she started work like a couple days later, in early December.
Also in early December she went to the doctor to be treated for asthma. She was having difficulty breathing sometimes and had low oxygen levels. So they gave her a nebulizer and she was on that treatment for like 3 weeks, but never really improved. Although, I have many texts to prove that she claimed otherwise.
On December 22nd, I had my last day at Knowledge Services. It was a half day, and I was ecstatic! I had worked for 2 years to leave that job and move into an industry I love. And that day I did it. I had a week off before I started my new job and I was intent on taking some chill time and building a bookcase for our living room.
On December 25th, we took my mom to the ER and she was admitted to the PCU. A day or two later, they admitted her to the ICU out of an abundance of caution. at 3:56am December 30th, she died. So I didn’t get my week to build the bookcase. Not that I really care at this point, but man. That was all I had wanted to do!
But anyway, the answer is that it was very sudden. And she was sick for a while, but we didn’t really know. To us, mom went from having asthma to needing care to suddenly not making it through, all in the space of a week – with a few days or hours in between each.
The Week Before
Christmas started off amazing. It was Hannah and I’s second Christmas in our house, and the first one where we were actually prepared. We went a bit nuts and bought a whole set of Rudolph the Red-Nosed Reindeer light-up characters for the front yard and it was amazing. Mom had found a job in early December, and despite not feeling well at all, was already doing amazing things. She saw a doctor for asthma treatment some time in early December, and wasn’t really recovering. I had gone over to my parent’s house on the 23rd and made Christmas cookies with my brother because my mom wasn’t up to it, and my brother had literally just gotten back from Brazil.
Mom made it downstairs okay, but she didn’t look good. Tired and winded. But still happy. To see me – to have some Christmas cheer. The whole thing.
We went over to my parent’s house at 1pm on Christmas day. Mom wasn’t out of bed yet and my dad told us that they had called over their neighbors, retired doctors, to check her for jaundice. They didn’t think she was, so here we all were.
It took us probably an hour to get mom down the stairs. She cried on those stairs. Hannah sat with her. I think she knew it wasn’t going to end well, but let me tell you. My mother was determined to have Christmas with us.
And we did. It was one of the best Christmases I have ever had. Obviously aside from the fact that my mother was sick. Because it was a Christmas where we were all there. We all had something meaningful to share.
And when gifts were done, we sent mom to the ER with dad. Adam went with them first. Hannah and I stayed behind to make dinner and walk the dogs. My best friend, Nick came by to help us.
Oh that was hard. My mom couldn’t get enough air when she would move, so she would have a small panic attack. Getting her to the car was a challenge I hope never to have to do again.
Hannah and I came once things at the house were more under control, and when it was clear no one was coming back anytime soon.
I don’t remember much about that particular bit, but I remember that my mom was jaundiced, and that the ER doctor said she was in minor heart failure. Oh that was terrifying to hear. They admitted her to the PCU and we went home at some ungodly hour – honestly probably like 3 in the morning.
And then we started the cycle that would be the norm for the next week. Wake up, prepare, go to the hospital, stay until dinner, then leave to recuperate.
The first night, I met with Nick and Robbie, two old friends who now live far away and were home for Christmas. I don’t remember any of it really. I wasn’t really paying attention, just looking for some time with my friends. When we were done, I went to Menards – determined to buy the wood I needed to build that bookcase. I should have realized it was a mistake when I struggled to put the plywood onto the cart (4×8 feet of plywood is really heavy and unwieldy).
But I didn’t and instead bought the wood and went outside to put it in the Jeep. The Jeep, however was too small, leaving my only option as tying it to the top of the car. In 5 degree weather.
It did not go well.
I donated my wood to the Fishers DPW…involuntarily.
And then the next day went back to the hospital again.
Heart of Stone
I don’t know why it hurts so much to lose a parent. It’s never really made any sense to me. In fact, I’ve always been afraid that I wouldn’t feel anything at all. Our dog Honey Bear died when I was a kid and I remember that I just wasn’t sad. It really freaked me out because that dog I had known my whole life. For probably twelve years or more. At some point I think I became afraid of the force of my love for others. I like to forget how deep that love and care for each person I have met goes. As a kid I moved around a lot and I think it makes it easier to be so open and loving if you forget the fact that it’s going to kick you in the ass someday.
And one thing I learned being in my family, and honestly probably watching my mother, was how to push past emotions to handle the situation. I always knew this about myself. Hannah had to coach me for months on how to communicate my feelings when we first started dating as seniors in college. And that’s not a joke. We spent hours of silence where she would press me, and I would eventually start to express things in a wild string of what always feels like nonsense. It took me four hours to tell Hannah that I loved her and we both even knew what I was going to say.
A part of that, which is something that has stayed with me still, is something I’ve learned about myself. In times of crisis, I shut out my emotions. It feels almost like they turn off. If it’s too hard, that’s just what happens – and honestly I have very limited control over it. The past few years it’s been less of an issue. After regular counseling sessions and several years with Hannah, I have never felt more open or in tune (not that it’s anything all that impressive – it’s just better than where I’ve been).
When I walked (or ran) down the hallway of the ICU I saw my aunt crying. I think she let us in. Adam and my other Aunt where in the room. I took one look at that room. One look at almost 4 in the morning. And all the emotions turned off.
I wasn’t scared, luckily. For the first time in my life I knew what was happening. The force of the adrenaline coursing through my tired body and the ball of things in my stomach told me it was all still there. But my emotions turned off and I just watched everything happen. I hugged sobbing family members. I took the note from the nurse with who to call for the body. And I could only picture one thing in my brain over and over again:
One thing you don’t think about when someone is being given CPR is the fact that you are actually forcing the heart to pump when you give CPR. So when I walked in and checked my mom’s stats I could see numbers – heart rate, blood pressure – popping up and down every half second or so. And every time I could feel the hope that they would hold and improve. And then I looked at the breathing [bubble] and saw the blood leading into it from my mom’s mouth and the little pool of it collected in the blue bulb. And the faces of every nurse in that room who knew too that it wasn’t going to work. But every time that number jumped I couldn’t help thinking “this might be it – it might catch” even though I knew it was already over.
It isn’t like in the movies where there’s a steady increase or decrease of beeps and then nothing. There isn’t anything that simple. It’s alarms everywhere, a dozen people desperately trying to save a patient, and then once next of kin gives the okay (after it’s clear they can’t bring back the dead) some one says “stop, stop, stop” firmly. And everyone backs away. And all that’s left is a bunch of zeros and alarms going off you don’t even hear anymore and profound silence despite the crying.
A lot of people have asked what happened. And because the ICU had pretty much become the Flu Ward by the time we got there, it seems some people think that’s what she died of. That, luckily, is not true. What did happen is more complicated. Actually, what I said to Hannah at 7am on December 30th, after being awake 4 hours already and crying and finally coming back home after a nightmare experience was, “She was just hosed.” Which is pretty much true.
Officially my mom died of cardiac arrest.
That arrest was caused by a blood clot in her leg that travelled to her lungs. I don’t know if anyone is entirely sure why that was there, but it was, and that’s what killed her.
The doctors were aware of the blood clot (although we were not at the time it happened). However, they weren’t treating her for it with blood thinners like they usually would because my mom’s platelet count was super low.
In addition to that, my mom was in minor heart failure (as the ER doctor called it), which basically means that her blood pressure was very low and her oxygen levels were continually low (like usually high 80’s, low 90’s for blood oxygen saturation – for context, it should be 100 or close to in a normal person). To treat her for those things, they gave her norepinephrine (essentially adrenaline for those not in the know) and had her on a high level of oxygen.
But that’s not all either. In addition to all that, my mom’s liver wasn’t working properly. No one was really sure why – there were some small pockets of what were probably cancer on her liver, but not enough to cause the level of issues she was having.
And her kidney’s weren’t doing well either because apparently they are one of the organs that gets withheld blood supply when your blood pressure drops.
Oh yeah, and they also found out that she had pneumonia, which was probably part of the reason she was having such difficulty breathing.
So yeah. Like I said, mom was kinda hosed at that point.
The Missed Phone Call
One thing that still kind of haunts me – and there aren’t too many at this point I don’t think (other than the obvious). Is that the night mom died, Adam slept over. He called me seven times between 1:47am and 3:04am. I had accidentally left my phone on vibrate and didn’t hear it. Same thing happened to Hannah. Adam did reach my Aunts, but I can’t imagine how terrifying that was for him. Hannah kept waking up at 3 in the morning for the next week or two in a full adrenaline rush. Every time I remember to, I turn my phone volume on when I’m home.
I don’t really want to talk about the funeral, or the week after my mom died. So I’m not going to. I remember scant pieces of it, and most of it is pretty boring. Actually, between my parents weirdly excellent long-term financial planning and the nature of funerals, it was way easier than I thought it would be. The hardest parts were just getting photos and video together.
Adam did the video, which I have below. The only thing I want to say about this is that way back in probably middle school, on some road trip with mom, she turned to me and said “I want this to play at my funeral”. The song playing was “For Good” from the Wicked soundtrack. And just like my mom, it is somehow appropriately honest, and also just a little too much all at the same time. I was the only one she mentioned that to and apparently, no other such requests had ever been made. I’m not sure how I feel about that, but it was really important to me that we not just play it, but feature it. I am inexpressibly glad we did, even though it makes me sad. Because Wicked was something we shared, and it is so touching to me that she connected with that song. I mean, it’s really appropriate for her, so it makes sense, but I don’t know. I think it expresses what my mom would’ve wanted to say, which is basically just “I lived my life the way I wanted, and tried hard to help the people I met along the way. So now it’s up to you guys to continue your own lives and live them the way you want, and to try to help people along the way.”
So to close out – here’s where we stand.
Two days after my mother’s funeral I started my first day of work as an Application Developer. I also started my last semester of school to complete a Certificate in Applied Computer Science. It became clear to me that first week, that I would have had to quit my old job. I could not have done it. I feel more than just blessed – I feel lucky and proud that I have the job I do now, because I love it. The days are really long, and every day is hard to wake up to. I’m not performing as well as I feel should be and often get confused and distracted. Because I’m a high achiever, I’m doing alright, but guys it is so hard. I wrote this post because I think about everything in here and more every day. I feel frozen most days on how to express all this – because to me it’s all happening all at once, and I struggle to feel that anything I say about it will be understandable.
It is hard to express how deep this cut goes. My mom (in conjunction of course with my dad and many others throughout my life) made me who I am. And she is dead now. Not gone, but I can’t call her up on the phone.
I came home the other day and was clearly upset and Hannah finally got me to say something about it. I said, “The walls feel different.” And it was true. My house, which I love, feels different. I’m not sure why, really, but it does. One thing I know is that I know I can’t show it off to my mom anymore. And sharing the things I love with people I love is a big part of me.
What Hannah said back was this. “This is a whole new world for you. You’ve got to kind of re-learn what everything is.”
I am blessed to have Hannah around. I am blessed to have a wonderful father. I am blessed to have a talented, fun-loving, loving brother, I am blessed to have good friends around the world, and so many other things. It does not take away the pain. But it makes the struggle much easier.