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After

Exit Stage Left, Ousseau’s Story

Welcome back for part two of “Exit Stage Left.” My side of this story is tough to tell. It will be tough to read. But I think it’s important, both for me to write and for you to read. This is a big fat trigger warning for those of you whose lives have been affected by suicide. My heart goes out to you all.

I originally had this piece titled Exit Stage Left, Part 2 but I decided to change it. I’m not part 2. I’m still here, as I’ve said before, a little bung up but still here.

I remember the first time that I heard the song from Hedwig and the Angry Inch, The Origin of Love. I’m not sure how many of you are familiar with it (if you’re not, you should really find a video) but it’s basically about the original beings that existed in ancient times. One day Zeus became angered with these earthly beings. At first planning to strike them dead with his lightning bolts. Then he realizes that a worse fate is to split the beings in half with a bolt of lightning forcing the two halves to live without the other. When these two halves finally find each other, their missing other half, that’s love. This was long before we knew about Mark’s brain tumor but also a long time after we had fallen so head over heels in love. I remember listening to this song and thinking “That’s it. That is really it. That’s what it feels like, like we belonged to each other all along.”

Many years ago, before we were married I dragged him on a trip to Sedona, Arizona. I’ve had a running bucket list of places to travel to. Some of them he wasn’t overly thrilled about but most of these turned into a pleasant surprise for him. Sedona was one of those places. If you’ve never had the pleasure, it’s an unbelievably gorgeous place with phenomenal red rock mountains to hike. Many people believe there are energy vortexes in these mountains with healing properties for you body, mind, and soul. So of course there are also the whole fringe culture; mediums, tarot card readers, vortex tours, aura readings, and the list goes on. Much to my surprise, Mark embraced the whole culture there and it was a blast. Who would’ve thought that we’d be hiking guided by an energy vortex map and then meditating in these spots. Or that he would go see a psychic with me. That was the first time that someone told us we had been together in past lives but it wasn’t the last.

Over the years we were told by multiple psychics, mediums, and one very eccentric clergy member that we were twin flames, souls that belong to each other and will find each other over and over again. Who knows, right? But it is odd that we got the same story multiple times over the course of 20 years by people that had obviously never met either of us. No matter what you believe spiritually, it’s just a nice thought, isn’t it? That you have another soul out there that you are bound to and you’ll always find each other.

I remember not long after his first surgery, within days of getting home from Brigham, everything was still very raw. Very raw. He just broke down sobbing and asked “What are you going to do without me?” That was the thing really. The thing that made him the most sad out of all of it. Everything else about it, I think, made him angry and frustrated. Everything he had worked so hard for; his career, our project in Grenada, stolen from him by this monster growing in his head. But his sadness, that was for me and the people we love. For all of us in the after. So of course we both sat there clinging to one another, sobbing. And then he just whispered quietly through the sobbing and said “I promise to find you sooner next time, so that we have more time.”

I guess my piece of this story really started without me even being aware of it. I went for a long overdue physical the spring after his first surgery, May maybe. The first surgery was behind us, the ultra marathon of back and forth to Brigham and Dana Farber for radiation had slowed to every six week appointments with the exception of occupational and physical therapies. This was a new nurse practitioner to me, very sweet lady. She suggested that I try an antidepressant. I’ll be honest, I was skeptical. I mean, I was going through some heavy shit so of course I’m sad, right? But I filled the prescription and took it home thinking, I’ll think about it. Who knows? Maybe I would decide to take it. But the days passed without me giving it too much thought.

The next month rolled around and I was picking up prescriptions for Mark, God knows there was always something to pick up at the pharmacy for him. The pharmacist said “We have one for you as well. Would you like it?” Sure! So I picked up month number two of the antidepressant which I promptly put in the medicine cabinet right next to the untouched bottle that I had picked up the month before. And that became the routine. I would pick up the antidepressant every month and deposit it into the medicine cabinet along with all the rest of the untouched pills. At some point I combined the bottles, still without ever swallowing a single one.

There was a period of calm in the midst of all the bullshit. It was that spring into summer of 2019, right around the time of that physical exam that I had. Spring and then some of that summer, things felt a little better. I would almost say hopeful but not quite. Mark’s therapies were going well. He had it in his head that he was going to go back to work in some capacity. We took a trip to our favorite resort in Mexico with all of the kids and renewed our vows with a Mayan shaman. We got in a trip to Grenada. He was far enough out from any seizures that he was driving again. He even talked me into going back to work for a short stint at Brigham as a traveler. That all sounds hopeful, right? What say you, Universe?

And of course the universe’s answer was yet another punch to the face. I think I had one week left at Brigham (out of only 8, sorry Brigham fam) when I got the text from him. We were staying at our Massachusetts apartment on the days I would work and then come back to the lake on the other days. Once again I get a text that says “I had a seizure, please call.” I honestly think if you knew my husband that the next part of the story won’t surprise you in the slightest. He was on the commuter rail headed into the city when I called him. He had called his neuro oncologist who wanted another MRI right away so he hops on the commuter rail by himself and then asks me to meet him at North station to help him the rest of the way. It wasn’t exactly a hop, I guess. He actually said that he didn’t think it was safe to drive to the commuter rail so he had walked the half mile to the station. I mean, honestly.

So I’ll just quickly gloss over the next couple of months. There’s a lot to talk about there and the details are not so much the point of this story, my story. Not a huge surprise after the seizures had started again but the tumor was in fact growing back. We talked him into a second surgery, a “heroic act of compassion” was how the neurosurgeon described it. Things got bleak again very quickly. More bleak than ever, really. The seizures were back in full force between that day and when we were able to get scheduled for the next surgery. It was less than a couple of weeks but every day was torture. And then the second surgery took so much out of him, both physically and mentally. And me too. I mean, we now both knew for sure that we were not unicorns, the magical beasts that get 10 years with a glio.

Everything was harder this time. Getting him around, back and forth to Boston from Maine since we had given up our Massachusetts apartment the month before. Getting him in and out of the hospital. Every damn thing was harder.

About a month after the second surgery they decided to wean his steroids which resulted in the mother of all seizures for him. It’s odd to describe it that way because you would’ve had to look him dead in the face to know he was even having a seizure. We had taken our dog Baxter for a walk, barely even left the driveway when he grabbed me by the arm and pointed toward his face. He had partial seizures so not whole body. His before the first surgery were always hand and arm. Now apparently we got facial seizures. This one was lips, labial fold, nose, and area around his eye. It’s fucking terrifying watching someone’s face convulse especially if you know what it really means. We went for an MRI to make sure it wasn’t a stroke, which it was not. Over the next 12 hour the after effects of the seizure kind of settled in leaving him unable to speak and with right sided weakness and a very pronounced facial droop.

It was devastating. So we restarted the steroids which I never allowed to be weaned again. Most of the after effects resolved in a week or so. In addition to restarting the steroids they also started an additional seizure medication. That’s what they did every time he had a seizure all along, either up his dose or add a new one in. No one, including us was ever brave enough to discontinue a seizure drug even though we all questioned if they ever really helped at all. I think this brought the total seizure meds alone to 5 different drugs.

After this last one was added his personality started to change. I mean, the man had been diagnosed with terminal cancer, had 2 scoops of his brain taken out, had countless seizures over the previous 9 months, was on an assload of anti seizure meds. Of course his personality had changed. But now he was mean. I mean, really mean. Cruel even, cruel to me.

It was awful. I’m not looking for sympathy here. I can’t even bring myself to share with you the kind of things he said to me. I was convinced that it was this new drug and tried talking to his providers. There were so many and honestly some times it was difficult to get any one take responsibility for the seizure meds. They sent us to a seizure specialist who, even after I explained how I thought it was this new drug, basically said this is how he is now and suggested we start hospice. That was the one and only time we saw her.

I was becoming more and more despondent. And he continued to be cruel. Finally one day I connected with a fellow in the seizure clinic. He was amazing and I will be forever grateful to him. He heard my concerns and suggested that we switch out that last seizure med for a different one. Within a week I had my husband back. Still the one with two scoops taken out of his brain, but the cruelty was gone.

The point of all that misery talk is to try to paint the picture for you, the place that I was in. My husband was dying, I was exhausted and not sleeping even when I had the chance, and now I had been dealing with verbal abuse. I’m not going to try to sugar coat it. There were drives home from Boston during this time when I would be listening to whatever horrible thing he had fixated on that day and my gaze would linger on the back of a dump truck that was stopped in traffic up ahead on the highway or the front of a tractor trailer truck coming at us in the other direction. I mean, we had always honestly said that we really needed to die in a fiery crash together, that was the only reasonable end to us.

Things did get “better” after the seizure meds were switched out. By better I mean he was my loving appreciative husband again. But I had the seed planted in my brain now. And the seed grew from gazing at the truck just a little too long to actually coming up with a plan. I’m a planner. I like having a good solid plan in place for everything. So that’s what I did. Not really with any timeline in mind, just for whenever I decided there was nothing left of me.

Let me be very clear about one thing. The plan would’ve never happened before he passed. Never. First off, even if he had stayed that mean man who decided he hated me, he was always my Mister and I never would’ve left him. The plan was always for after that nightmare was over.

So I started to research not only the antidepressant that I now had several months supply of squirreled away in the medicine cabinet, but all of the meds we had in the house. And let me tell you, we had a lot. So I researched them all; doses, overdoses, everything about them. That’s when I started to collect my “to go bag” as I have come to refer to it. It was literally a container of drugs that I had on the ready for when I was done with all of this. It was more than enough that there was no worry about it not working.

After Mark passed I was a mess, not just because I was suddenly without him but also because of the physical and mental ridiculousness that I had been through over the 20 previous months. I was lost, sick, exhausted, depressed, all of the things. I felt comforted knowing that my to go bag was there. Strange maybe, but I was. I knew I had an escape hatch if I needed it.

But as the days passed I started to see past this fog of despair and really started to look at the people around me, the ones that I had leaned on when I was at my lowest point. How could I pass that pain on to them, the people that love me? They were already grieving Mister so how could I do that to them? That’s the thing with suicide. The pain doesn’t go away, it just gets passed on to someone else. They had been through enough already. No matter where my head was at, they didn’t deserve more pain.

I’m now just over a year out from his death. The to go bag has been disposed of properly and I’m okay with that. I no longer need the comfort of knowing it’s there. A ways back I had a conversation with both of my kids to tell them that they didn’t need to worry about me hurting myself. I honestly had been so consumed by my own grief that it didn’t even occur to me that they might be worried about that, the very thing that I had so carefully planned. I told them that they were stuck with this fucked up version of their mother for the foreseeable future, universe willing.

I still have days that I let myself wallow a little; miss him and my old life. But I don’t live there. I live here now, in the after.

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