Family is a difficult topic for me to discuss. My relationships with my family are very complex. I have a lovely relationship with the majority of our family but not everyone. I love my family even if I don’t like them. But I don’t need to be best friends with someone just because they are family. There has been good and bad. But it’s complicated and not the fantasy of a perfect wholesome family.
There is some fantasy that family either is or should be is a perfect wholesome, deep, and meaningful bond of people with shared blood that cannot be broken or discarded. Of course, some families have a very close and deep bond but that isn’t always true for everyone. In reality, families often have a complex history and comprise people of different personalities and values. Some people may not be even be able to define family by shared blood and genetics for a myriad of reasons. Some people may define family by the depth and strength of a bond and not by shared ancestry.
No matter how you define your family, it doesn’t always mean the relationships are rosy and perfect. We are human and the reality is that sometimes we will fight, disagree, ignore, or even mistreat each other (intentionally or unintentionally). It is this humanness of relationships that can create difficult situations, misunderstandings, and hard feelings. That’s normal and expected. However, so many people tend to put “family” on a pedestal where it is okay to mistreat one another, make excuses for poor behavior, tolerate and even except these hurtful and toxic qualities just because they are family. I struggle with the concept that family should supersede everything else. The concept that we should tolerate and accept hateful, hurtful, or toxic behaviors from family is not acceptable to me. These same behaviors seen in work relationships, friendships, or even in random interactions with strangers are not acceptable. Neither is it acceptable from “family”. However, people tend to make excuses, deflect or shift blame, or justify it because they are family.
When a family member is behaving poorly, you’ll hear people say, “oh that’s just who she is, don’t be so sensitive.” Suggesting that the problem isn’t with the poor behavior of the family member, it’s your sensitivity that is the problem. Another example, “that’s your mother, she raised you! she did the best she could!” Sure, mom could have done the best she could but that doesn’t mean she was perfect or didn’t fuck something up. It doesn’t mean that mom doing her best was good enough. Both can be true – mom could have done her best but also it could have been harmful to the child. By dismissing the fact that poor behavior can be hurtful or harmful it sets the example that it’s okay to treat family poorly. It allows for the behavior to persist and potentially become habit. It puts the weight of shame and blame on the person who feels hurt. That person then has to stuff those feelings somewhere else which sets up the potential for a toxic cycle. The concept of family superseding everything else is dangerous and difficult to address. Especially if it’s been “normal” and “accepted” by the family for decades.
That being said, I love my family and have a good relationship with most of my family. But I also define family to include non-blood related people. People who have made a consistent and significant impact in my life for the better are also my family. But it isn’t always easy or perfect. We fight and get mad at each other. However, the healthy part of the family will work their differences out together and not be toxic assholes.
As a nurse I know how a medical crisis can bring out the best and worst in a family. I’ve seen it time and time again where a medical crisis brings out the shame, fear, and regrets of someone close to the patient and it shows up in really ugly ways. People aren’t always capable of being their best self during a crisis. I’ve also seen the opposite where people were able to put their own bullshit aside and be present. I was fully bracing for all possible scenarios when we first found out that Dustin had a giant blob of concern in his beautiful brain.
I had called my mom to tell her what was going on on July 11th and Dustin was still in the emergency department. I didn’t have any idea of what the plan was or what I was going to do. I was terrified. I needed her to know that I wasn’t okay. I knew my mom would be supportive but I did ask her not to share it with anyone until we knew more. Dustin is a very private person and this was his story to tell and not mine. She understood and was scared for me. She was the only “blood relative” that I told on my side of the family.
Dustin’s family would be a different story. I knew he wasn’t in a place where he could share this information or make a judgement how to share it in the first few days of his hospitalization. I knew he wouldn’t want to share things until we had more information. I was kind of in a really tough spot. I didn’t know how bad things were yet but carrying the weight of all this myself was too much to bear. I made the decision to share Dustin’s situation with his sister Caitlin and her husband Nick. I didn’t know what was coming but I needed someone on his side of the family to know and help me if needed. Dustin’s brothers and were not an option because we didn’t even really have a relationship with them. He wouldn’t want me to tell his mom either, so that was out of the question.
Caitlin is the youngest of the four kids. Dustin is second youngest, followed by Rob and Greg. Dustin has always been closest with Caitlin, like super close. She and Nick are the fantasy version of family to us. We would chat with them regularly on the phone and we would visit with them regularly. Of all Dustin’s siblings, she was the crown jewel to both of us. She wasn’t just his sister but a genuine friend. It was never a forced relationship of “she’s my sister and I see her on the obligatory holidays and family events” kind of sister.
Dustin and Caitlin understood and respected each other on a very deep level. Being the closest in age, they shared a lot more memories together than with the other two boys. They have complimentary personalities and interests.
Even though I knew Dustin would have preferred I didn’t share with anyone, I knew Caitlin and Nick would be a grounding source of love and support. Of all people, Caitlin would be the one he would share with if he could and would be the person he’d be least mad for sharing with.
I don’t really recall the conversation but I do remember asking her not to share with anyone because he’s not in a place to talk with others or share with others yet. Especially, his mom. They were super understanding and supportive of this.
Over the next few days of Dustin’s first hospitalization, his mind started to clear up a little and I told him that I told Caitlin and Nick about what was going on. At first he was a little miffed and wished I hadn’t said anything yet. But he quickly understood once I explained my perspective of not knowing what was going on or how bad it was and she was the safest from his family to tell “just in case shit got really bad”. Because we’d ultimately have to tell his family at some point and she could help us navigate it when we were ready.
Dustin immediately dreaded telling his mom. I remember him saying that if he could deal with this by NOT telling Martha any thing, that would be ideal. But as we started seeing the neurosurgeon and neuro oncologist, we knew it wasn’t something that could be hidden. It’s hard to hide a brain surgery, chemo, radiation, hair loss, and mental/physical decline. While we didn’t know exactly what it was, we knew it was bad enough to be life limiting. Dustin immediately knew that he didn’t want to tell his mom over the phone and wanted to tell her in person.
Martha is a complicated person. I love her dearly but she is very difficult to deal with even on her good days. She has suffered a lot of trauma in her life and has had little to no support which has resulted in a long history of terrible coping mechanisms. It has impacted her ability to see and interact with the world accurately and appropriately. When you cannot see the world accurately and react to it in a reasonable fashion, it’s not a surprise it impacts her ability to have functional and healthy relationships. I’m in no way making excuses for her behavior, it’s just part of who she is and why it has been so difficult to have a healthy relationship with her over the years. It’s why Dustin carefully considers every interaction with his mom. It’s part of why he’s so adamant about being independent and self-reliant. Martha had let Dustin down enough to know that he couldn’t rely on her for anything. Dustin loves his mom, but from a safe distance. Allowing her to come in too closely always ends up being a disaster for all involved. But he loves her and does not want to hurt her either. It is a very tricky balance because you’re always in the wrong no matter what you do.
I should expand on Dustin being a fiercely independent and stubborn human. He always wants to do things his way and he doesn’t want help. He never wanted to burden anyone. A lot of this stems from his dad unexpectedly dying when Dustin was 12 years old. He saw how hard it was for his mom when his dad died. His brothers were not taking their dad’s death well either and were not their best selves – often acting out or just abandoning the family. Dustin felt he had to pick up and be the man of the house. He couldn’t burden his mom with his troubles because she was too busy grieving the loss of her husband and managing the poor behavior of the older brothers. To him, it was cruel to add to his mothers burden and worries. His worries and problems were his own and no one else’s. He felt like he didn’t deserve help, let alone ask for it. It didn’t matter that Martha was doing the best she could because it still left large gaps of his needs either unmet or totally disregarded/ignored. It’s a perfect example of someone doing their best in a really shitty situation but others also experiencing the fall out of their best not being good enough. Martha did her best, but it is also true that Dustin experienced the trauma of being totally alone in the world. It doesn’t mean Martha was intentionally a bad mom, but Dustin still experienced and learned he was alone. Therefore, he needed to take care of himself because no one else would. He always said that “you cannot and should not depend on anyone but yourself.” It is easy to understand and see why it was hard for Dustin to accept help let alone ask for help. It was very important for me to let Dustin be the director of his own story as much as possible. I wasn’t going to take away is autonomy and independence. My job was to support him in living his best life as he defined it.
I remember we called Caitlin to pow-wow his plan and to get her feedback. Dustin’s concern was that Martha is a bit unpredictable and overbearing. He knew that telling her in person would be best because she could see him. He thought, “she can see that I’m still Dustin so maybe she won’t freak out.” He also said he didn’t want to overwhelm her with all the possibilities. She’s smart and a librarian – so very good at researching things. To him, it was cruel to allow her to spiral into a rabbit hole of darkness and despair. We would stick to the facts: he had a seizure, he has a blob in his brain, and needed to have a biopsy to see exactly what this blob was but it could be cancer. He wanted to emphasize that he was still Dustin, he was fine, he wanted to be treated normally, and live his life as he otherwise had been. He also decided he wouldn’t be sharing the specifics of when certain appointments were because she’d be hounding him for details immediately. He wanted and needed time to process stuff before sharing which I totally respected and needed for myself too. The whole point of going to tell her in person, was to show he was okay and he had a plan. No need for rabbit holes of unknown. Last thing Dustin wanted was for her showing up uninvited just to get visual confirmation that he was okay.
Caitlin agreed that telling mom in person was best and to stick to the facts. Don’t paint doom and gloom because we don’t know what it is yet. Don’t give too much information to where she’d get overwhelmed. Just stick to the facts. She suggested we stay with them and we could have a cookout with mom. It would give everyone privacy to be themselves and react to the news. We could share a meal and just have a nice catch up. So that was the plan. Martha would be the first person we’d tell so that way she found out from Dustin himself and not through the grapevine.
We also decided that we’d write a letter to give to the family when we told them. A letter with the facts, next steps, and what Dustin needed and wanted. We knew that getting difficult news is often overwhelming so we wanted to have something people could reference in case they forgot or didn’t hear something. Hopefully, this along with starting a CaringBridge site would keep everyone informed and up to date with accurate information. Sometimes regardless of intentions, people may share incorrect information or make wild assumptions. We didn’t want people worrying unnecessarily or having misinformation get out of control. We know it’s easy to misunderstand, misinterpret, or not hear things correctly. Our brains often fill in those blanks with what we think is the right and accurate information. It was best for everyone to have one source of truth. It’s stressful enough, we don’t need other stressors contributing.
We were expecting to hear back from the neuro oncologist at Northwestern on Friday, July 27th on what was decided at tumor board. We wrote up our letter to give the family. I set up a CaringBridge site that would be ready to launch as soon as we were ready to share with folks. We planned to head down to Bloomington that afternoon and we’d hear sometime on the drive down on what the tumor board decided. We’d stay with Caitlin and Nick. We’d have a cookout on Friday and tell Martha about the blob in Dustin’s brain. We’d also see some other friends over the weekend as well. But telling Martha on Friday her some time to process the information but we’d still be in town if she had other questions and wanted to see us a second day.
We felt like we had a good plan in place and were confident we were doing the right thing. But you know what what happens to well made plans, right? They often go awry….
Beside you in time 