Change, Grief and Duchenne
Hi everyone. Hope you’re all having a wonderful evening. Thanks for joining us today for Mental Health Matters with DJ Kimble and Heather Benbrook. Each week we’ll be discussing many of the aspects of mental health that play key roles in the lives of many of us as we try to find our way on each of our unique Duchenne journeys. This week, we will be discussing change and grief and how it’s magnified by Duchenne progression.
Missing a paragraph?
Yeah, definitely. Um, so I’m Heather Benbrook. I am a certified school counselor, but also a licensed professional counselor associate in the state of Texas.
And, um, my first experience with Duchenne was four – probably about four, four plus years ago – with a student of mine. I had no idea what Duchenne was at the time. So, through getting to know my student, I really got to know what Duchenne was, what that looks like, the struggles that he had with that – you know – through his experiences. And then through private practice, as well, I’ve learned a lot more and have just grown to have this passion to help with the community.
And so that’s how it really started. It’s just grown and, and I’m here and I love helping with that. So I’m glad that I had the opportunity to. So thank you.
Heather, apart from the terminal diagnosis, why do Duchenne families tend to carry so much grief?
Oh, yeah, that’s um. Grief is – I like to think of grief as a normal process in life. No matter what stage of life you are in, what struggles you’re going through, you’re going to experience grief, no matter what.
Grief is a normal reaction to some type of change, maybe a loss, maybe just a change in routine, those kinds of things. It can be experienced with any kind of loss.
So with that in mind, when you’re talking about any kind of terminal illness or life altering illness, you’re going to have extreme levels of grief and extreme levels of loss. Not only loss by death, but also loss through changes that happen in your life – mobility changes, changes in the dynamics of families, changes in routines and structures, those kinds of things. And the list can go on and on and on.
But really, experiencing loss after loss after loss in different aspects of life, really is what grief is. I think the more that we talk about it, and the more that we work through those things and process those things – as a counselor, you know that’s kind of like my forte, right? – but when we talk about these things, and we work together and we come together to normalize grief, and normalize loss. And talking about it opens up those avenues to be able to work through that and work through that together, especially in the Duchenne community.
To add to that, Heather, how does this affect the stress levels and relationships in the family?
Stress is the natural reaction to any kind of change too, right? – not that loss and stress are synonymous. But stress is your natural reaction to changes. And so when there are stresses in relationships – I mean, anytime you have two people involved in a relationship, you’re going to have stress – you’re going to have conflict. You’re going to have disagreements and things like that.
But now, whenever you’re thinking about, you know, decision and the family dynamics there, there are a lot of changes that can happen that can be stressful – you know, with siblings, with the parents, with the individual with Duchenne. There’s all different levels of stressors, change, expectations, those kinds of things.
And so when stress levels rise, then you’re going to have these natural reactions. I mean, we all know the natural reactions of fight, flight, and freeze. And actually, I’ve recently been reading up on two more that they’ve added. One is called “flop,” which is kind of like just flop and have given up. And then one is “fun,” which is trying to please people. So that’s another stress response that is very common, and I’m noticing it a lot more in people since I’ve learned about it.
But when you go back to those natural stress responses. Fight – there you go, there’s arguments, there’s stressors, so your relationships are going to struggle with that stress response. Flight – when you think about flight, you’re retreating, you’re getting away, you’re withdrawing. That alone can cause some stress in relationships, too, because some people like to talk about it, some people don’t. And so you’re going to have some struggles there as well.
So no matter what the stress response is in the brain, you’re going to have relationship struggles. And so when that happens, then the conflict happens. And then people deal with it differently. So it’s very hard.
So kind of learning about those things – and learning what your responses are – can really help you with those relationships and how to tackle that and how to cope through those things as well.
Heather, what do you want Duchenne families to know – or to do – in order to better manage their grief?
Yeah, there are so many things that we can do to manage that grief. Oh, my goodness, I’m trying to think of where to start.
First of all, I think talking about it and normalizing it. That is priority. Because if we can’t talk about it, we’re not gonna be able to work through it. If we can’t normalize – 1) that we are all experiencing grief, 2) that we’re experiencing loss in our own ways and 3) that experience of loss is different for everyone – if we can’t normalize that feeling, we can’t get to the next point.
And then I think after that – after talk, you know, normalizing it – understanding grief and understanding what it truly is. Because a lot of people have a misconception of grief – that it’s just about death – but it’s not. It’s about everyday little situations that we experience, experience in changes in behaviors and situations. So once we understand the basics of grief – and we can normalize that – then we can get to the point where we can actually start doing something about it and take action.
Some of the things that we could do is talk about it, you know, and have conversations with families. Talk with friends about it.
Talk about your real feelings about it using there’s a strategy called iMessages. Like, I’m feeling this way, I’m feeling angry, I’m feeling stressed. I’m feeling confused, whatever the feeling might be, because this so it’s just a simple iMessage I Feel blank because blank or I feel blank when blank. So just a simple statement. So guards and walls don’t go up. Sometimes when we’re trying to talk about something, and it feels like we’re almost attacking the other person, because grief, it can be one of those things that people put a wall up pretty quickly about. So being very factual and focusing on feelings can really help. That’s a really good strategy to use when we’re talking about it.
Um, mindfulness, I know that it’s probably kind of one of those fad things that people think about. But it truly is like, when we think about the past, we can’t control anything there. Right, we can’t go back and we can’t change it. So then these depressed moods start happening, when we think about and focus on the future, that causes worry and anxiety. So back, being mindful and being in the moment that we’re we have right now and enjoying those moments that we do have, because those moments are precious, we truth, no one truly knows when we’re not going to be here anymore. And so thinking about that, and just being in that moment, and enjoying enjoying life in the moment, that’s where you find true happiness.
So doing things outside spending time with family, watching a movie or watching TV reading, like I’m trying to think of all the little things that we could do, to just be in that moment, and enjoy our lives. And when, when we, when we have those moments. Now, obviously, we can’t be mindful all the time, right. But I’m definitely trying to enhance that and increase that as much as we can.
I’m trying to think nutrition and health, you know, being healthy, trying to be active, as active as possible. Being with nature, those kinds of things. really help our mental state getting that vitamin D and just being outside in the sun, it doesn’t have to be you don’t have to go run or walk or any of that just being out in the sun and getting that vitamin D and trying to stay mentally healthy as well.
And there’s a lot of nutritional things and natural things out there that can really help maintain your health that, you know, directly aligned with your mental health. Because if your body is not healthy, your mind is not healthy. And there’s so much that’s connected with our brain and our bodies, that we it’s really important to take care of that as much as we can. But as far as that.
Thanks so much, Heather. Great discussion. Well, I guess that will wrap up this week’s mental health matters. Great having you join us, Heather. You always offer such great guidance and a bit of hope to the Duchenne community. We do truly love having you.
Thanks, everyone for joining us this evening. We hope you found our discussion today helpful. If anyone would like to submit questions, or even join us for a discussion, please reach out to Family, Friends and Duchenne. We look forward to hearing your thoughts.
Have a great evening and we hope you all enjoy your weekend. Join us next week for the next Mental Health Matters. Good night.