The Grief of a New Disability and More with Meredith O’Brien: A Spoonie Authors Podcast

This week, multi-published author Meredith O’Brien joins us to discuss Uncomfortably Numb, a memoir about the life-altering diagnosis of multiple sclerosis. Find out more about Meredith at https://www.mereditheobrien.com

Don’t like the podcast format? Scroll down to watch this podcast as a YouTube video (CC available) or read the transcript!

The Spoonie Authors Podcast is part of the Spoonie Authors Network, a community initiative devoted to sharing the stories of disabled authors and educating abled people about what life is like for disabled creatives. Transcripts of this podcast are also available on the Spoonie Authors Network.

To learn more or become a contributor, visit spoonieauthorsnetwork.blog. And of course, if you enjoyed this podcast, make sure to leave us a 5 star review on your favourite podcast streaming platform.


Dianna Gunn: [00:00:00] Hello and welcome to this Spoonie Authors’ podcast, a podcast where we explore the life and stories of a different disabled author each week. I’m your host, Diana Gunn. And joining us today is Meredith O’Brien, a former newspaper reporter and investigative journalist. Meredith O’Brien has written four books, including her most recent Uncomfortably Numb, a memoir about the life altering impact of a multiple sclerosis diagnosis. Her third book, Mr. Clark’s Big Band, won an independent book publisher award and was a finalist for the Forward Indies Award. She lives in the Boston area where she teaches journalism and writing at Northeastern University. Hello, Meredith.

Meredith O’Brien: [00:00:46] Hello, Diana. So great to see you today.

Dianna Gunn: [00:00:49] It’s great to see you, too. I’m really excited to chat. Let’s start with a little bit about your memoir, Uncomfortably Numb.

Meredith O’Brien: [00:00:57] Sure. It started very strangely. I was actually the very first scene. The whole the whole premise kind of is a little odd because I experienced my very first M.S. symptom, which was numbness on my left leg while I was interviewing the band director for that book you mentioned Mr. Clark’s big band. I was just getting to know him. I was just starting this new book project where I was going to be following a middle school jazz band for a year because they one of their members, a 12 year old trumpet player, had died unexpectedly and suddenly. And it had a huge impact on the kids in my small town in Massachusetts, in south rural Massachusetts.

So I wanted to see how this kind of. This charismatic, just big bear of a guy who is their music director, how he was going to guide these emotionally fragile kids through a year without what they’re great with grieving and using their music to grieve their friend. So I was about ready to start on this. I’m getting to know, Mr. Clark. I’m sitting in a I think it’s like a TGI Fridays or something at a mall. And I am interviewing him and I start feeling the numbness like I’m supposed to be paying attention to him, but I’m not. And the book starts from there.

And that’s the summer of 2012. And it traces the two year period between then and the summer of 2014 when I’m finally diagnosed with multiple sclerosis to 2017. When I actually finished the book, I started writing at the beginning of the memoir after I got M.S., I was really worried about the way that it was. It was affecting me. It was affect, it was slowing me down. I was having fatigue, I was having cognitive issues. In the meantime, my mother passed away and my father got sick and I just was really worried I was going to finish this book about the kids. And I promised the kids in my community I’d get it done, I’d give it to them. I’d have it in their hands before they graduated from high school and spoiler Im going to spoil the end of the book.

The end of the book is a is the book launch party for the Mr. Clark’s big band. I felt at the end of it I realized MS really changed and affected the way I was able to get through the writing process to that point. But I was there. I was standing there. I was surrounded by people who had helped me through this journey and that even though it wasn’t the way I envisioned it would be, it was good, it was satisfying, it was heartwarming. And and MS has changed things. But there are ways to just move forward regardless. So that’s kind of the overarching narrative arc of the book.

Dianna Gunn: [00:03:50] That’s awesome. And so that’s really cool, because when I read the description for Mr. Clark’s big band, I did I kind of just assumed it was a novel. I didn’t realize that. I guess it’s is it a fictionalized version of their story or is it nonfiction?

Meredith O’Brien: [00:04:06] No nonfiction, my older son was one of the members of the band and I had to get his permission to let me sit in on all the rehearsals and all everything before I wrote the book. And then I changed all the kids names. But it was nonfiction.

Dianna Gunn: [00:04:22] That’s really cool. So what was the most challenging part of writing this project? I guess there’s a lot to choose from. It sounds like.

[00:04:32] I know. I would think content wise, there were two that come to mind early in the memoir, which happens earlier in the time sequence that the book covers. My mother, who is sixty five, was diagnosed with a fast moving cancer and it was her second time dealing with cancer and it’s from six months from her diagnosis. She she died and I had a very difficult or challenging relationship with her and I was trying to struggle with how do you say goodbye to someone when you have all these unresolved issues and you kind of want you imagine this cinematic reunion and everything’s better. And I’m the daughter she wanted and she’s the mother I wanted, but that really doesn’t happen. And so you kind of have to make a messy peace with it.

And so writing about her and about about my reaction to her illness and death and then then mourning her was challenging because the mourning of my mom kind of then my mother died in March of 2014 in July of 2014. My father was hospitalized for a period of time. And at the end of July, 2014, I was hospitalized, got was diagnosed with M.S. So I was dealing with kind of layers of mourning and that was hard for me to process and write about.

And then kind of as an offshoot of that another another challenge writing this book was coming to terms while I was looking back at the events of this period of time, I was realizing how difficult I was when I would have MS symptoms and my husband, Scott, we’ve been married forever. He would come up, he would try and help me. He’d try to do things and say, hey, it’s a little too hot outside and you have heat sensitivity. Why don’t we go someplace cooler? And I’d be like, I’m fine. Don’t tell me what I eat. And I get so frustrated. Or I would I suffered from fatigue and he would try to I would get these symptoms or these these indications from my body that, hey, you’re getting tired. If you don’t stop, you’re going to hit a wall. And I.

And at first I ignored them. I just said I always did this. I could do this. And then it would hit me and he would be trying to prevent me hitting the wall and I get angry with him. So I realized in hindsight, as I was putting the memoir together, how difficult it was for me to. Let go of my how I had been before and and just allow myself to accept that I lived in a new version of my life, something that really stands out to me both your your third book and this memoir are really in a lot of ways about grief.

Dianna Gunn: [00:07:32] Did you find that writing, Mr. Clarke’s big band also informed your mourning process at all or helped you in any way?

Meredith O’Brien: [00:07:43] Well, I think it did. When I wrote Mr. Clarke’s Big Bang, I did a lot of research on children and grief and how music helps children. And I saw and I interviewed some of the kids who were whatever children wanted to interview with me, do an interview with me and their parents. Agreed.

I heard a lot from them about survivor’s guilt and kind of just like how they they were afraid certain things were disrespectful for their friend and and how the band director struggled with how do I guide these kids? Is it OK to laugh? Is it OK to be light? And when I was dealing with the with the material for the memoir, I had that feeling because I tend to have a dark sense of humor, which kind of can be off-putting a little bit sometimes depending on the the audience. And like when my mother was passing away my my brother and I and my brother and I talked about him a lot, had this really dark sense of humor about everything because it was our only way to get through it. And I know that when the kids in the Mr. Clark’s big band were dealing with things, they didn’t laugh about their friend, but they needed laughter because that helped. And so I recognized that when I was looking at my own my own notes in my own narrative, but I didn’t include a lot of the some of the more dark humor we exchanged with one another when we’re trying to get through a nightmare. But..

Dianna Gunn: [00:09:09] Some of those things are best left between you during that,

Meredith O’Brien: [00:09:15] Maybe TMI.

Dianna Gunn: [00:09:17] Yeah, yeah. I understand a thing or three about processing grief through humor, but bringing things back to an Uncomfortably Numb and the process of creating Uncomfortably Numb. How did how was the process impacted by your multiple sclerosis? How has that changed your approach to the writing process?

Meredith O’Brien: [00:09:43] That’s interesting. And. There isn’t a single answer to it, it usually depends on the day, for example, like multiple sclerosis, like a chronic most chronic illnesses is very unpredictable. I don’t know from one day to another what symptoms I’m going to be expecting. I could feel fine right now. Tomorrow I could be in bed with fatigue. Blinding migraines where I can’t read and I can just and it makes me so angry when I can’t even read and I’m laying there and so I’m just sitting there listening to CNN drone on or something. I can’t I feel like I need to do something, but I can’t.

So those things happen and I can’t control them when they happen. So I try to do as best as I can make the atmosphere more favorable for not having that, trying to get enough sleep, trying to to to. And I sleep almost like a teenager, like I’m sleeping late because I really need the sleep, I crave it and I’m learning to just listen to what my body needs. And if I get the sleep and I take care of it and I and I don’t over don’t push myself, which I have stopped doing for the most part. But I used to be highly caffeinated. Go, go, go, go. I had three kids, three young kids. I was working and I was constantly downing caffeinated beverages and just running a million directions so that all that changes. And so I am trying to do less but do it well. And so writing I write when I can. I write when I have when I’m, when I’m not foggy headed, when I’m not kind of like sometimes I describe being foggy headed, like you’ve taken cold medicine the night before and you wake up kind of feeling like, well, my head’s a little kind of crazy, but so I’m trying to take care of myself because that’s the only way I can write and I really want to write. So I have to deal with my body symptoms first before I can carve out the time to write.

Dianna Gunn: [00:11:52] Yeah, I think that’s really important and that’s one of the hardest lessons that. We learn when we become disabled, certainly many authors who have been on this show before have said very similar things. So the adjustment period, when you’re realizing all of these limitations, is often also described as a period of grief for your mourning, your old healthy life. And this is another layer of mourning that you address in Uncomfortably Numb. Can you talk a bit about that process and especially what you wish more people understood about that process?

[00:12:33] Sure. And it is I didn’t realize it in the moment until I started to write that there were twin lines of grief and plotlines of grief throughout the memoir that when you’re given the diagnosis of an incurable chronic illness, particularly one that may worsen with time and no one ever knows which MS Patient is going to deteriorate, have a deteriorating condition or not like I’m relapsing remitting right now, which is the milder form of multiple sclerosis, but it could easily change. And we don’t know who is going to get that or who isn’t. And I really had to recognize that the person I was that coffee guzzling, running around at a million miles an hour person who multitasked and did all these things couldn’t be the person that I was.

So I had to give myself time to to let that person go. And that was hard for me. And it was it was a lot of a lot of arguments with my husband, a lot of me being angry. And I kind of like it, like during this covid lockdown at this the covid lockdowns and quarantines descended on all of us involuntarily like nobody wanted. Nobody wants to wear masks and not go out of the house and not see your family and everybody’s life was collectively upended, and to me, that’s kind of like how MS was it arrived into my life and kind of took it over. And with covid like we’re mourning the things that we’ve missed, we’re mourning birthday parties, graduations, weddings, even funerals, being able to to grieve together. We’re collectively grieving all these things we missed. And we’re frustrated because we can’t we feel like we can’t do anything. And that’s very similar to how I feel with MS, or at least when I was trying to deal with it, like I can’t I realized I couldn’t just sit there and be mired in this frustration and disappointment because that was a waste of my energy.

One thing that would have been helpful is I didn’t want to be the person like the walking talking MS encyclopedia, but people didn’t don’t really understand what MS is. And they kept thinking, I’m going to get better, it’s going to go away and it doesn’t. And I am like this and have my symptoms. I can manage symptoms, but they’re going to stay and and a little understanding and maybe me, I started to be more open about MS and put more explainers in my Facebook posts or other things to try to help people understand it before they kind of say, so are you better now? Like, I’m not better in the way like the person I was. I’m somebody new and that’s OK. I’m that’s what’s happening. So I have to deal with that now. And just to recognize that it is a transition for that person and your friend is still your friend, but she’s got a different set of life expectations now.

Dianna Gunn: [00:15:38] Yeah.

Meredith O’Brien: [00:15:40] Like my dad, whenever he would call me for probably the first six months that I had MS, he always acted like I was on the verge of going to the hospital on email. You’d say, how are you? How are you feeling, Dad? I’m fine.

And once I came home from a trip and he got the dates mixed up and I called him, I said, hey, we’re home. And he said, I thought you were in the hospital. I said, Why? And he said, Well, you were supposed to be home yesterday. I said, no. I said I was going to be home today. I said, why would you think I was in the hospital? Because you have MS, no, dad. Like, just it’s not like that. And it’s just it’s a lot of educating that I wind up doing with friends and family without trying to come off as the the the one note. MS Sally, over here.

Dianna Gunn: [00:16:31] Yeah, and it’s frustrating because they you know, that education just doesn’t exist for most people, you know, it has to be really actively sought out. It’s not something that is discussed at any point during our regular education.

Meredith O’Brien: [00:16:45] Right.

Dianna Gunn: [00:16:47] And I mean, like, obviously our regular education couldn’t get into the specifics of every, you know, disability.

Dianna Gunn: [00:16:53] But just having some awareness of disability that is trained into our education system and brought into our curriculum would be really great. So to cheer things up a little bit, it was the most exciting part of writing, Uncomfortably Numb and yes, you are allowed to say finishing.

Meredith O’Brien: [00:17:17] Well, I have the nerdy answer. The nerdy answer is that I have a background in reporting and investigative reporting. And I love research because it’s such a weird nerd and I love to throw myself into research. And in a way, doing that helped me kind of take a little step back from me as a lead character and learn more about MS and learn about it for myself, about all of the material I was going to be writing about. So I read all these books by people with MS. I went and looked at MS websites. I read medical studies then to try to try to learn about the disease and learn about chronic illness.

Then I needed to kind of treat myself like a research project and I requested all my medical records and I downloaded all my texts from the period of time that the book covers so I could get a sense of what was my thought process at that moment? Who was I talking to? What was I saying? I looked at all my emails and my photos on my phone, and then I sat down and I interviewed people. I interviewed my brother and sat and we talked about things. He told me things I didn’t know about the experience with my mother passing away and my father getting sick. I talked to my family and that was the most eye opening because there are there were two incidences or three incidences where I had pretty bad MS attacks right before I was diagnosed. Two of them were on a family vacation in Los Angeles and one of them was at home right after we got home from Los Angeles, which we later learned the whole thing was one big MS attack.

But I never really understood what the kids, my kids understood of my disease at the time. My twins were 15 at the time and my youngest son was almost 13 and. When after we came home from our trip where I had two big events, health events there, I was violently ill on a Sunday morning and we had to call the ambulance to take me to the hospital. And then I never knew what my husband told them. I never knew what they did while I was in the hospital for two days. I didn’t know what they thought. I didn’t even I don’t even know how they ate because I don’t know what went on. So I actually sat down and talked to them. What was it like to have your mother taken away in an ambulance? And what were your fears? What did you learn? When did you learn about Ms. And and my husband went through a lot of reflection saying, oh, I didn’t make the best choices in these situations. And he said I could have handled it better. I didn’t. He it was the reflection for him was difficult because he is a fixer and he couldn’t fix this.

I love getting the all those different perspectives because I didn’t know those people stories. I honestly didn’t know what my children did or how they didn’t know when I was in the hospital because I was just focused, otherwise focused on other things. So I like doing that.

And then the other the other more fun aspect of writing the book was that during this whole period, a couple months after I was diagnosed, I decided to well, I become fixated with adopting a second dog. I kind of emotionally coerced my family into saying we need a second dog. I just wanted a puppy. I wanted it seemed so rational. But after the horrible year, a death and illness so, I want something really fun and cute and cuddly. And in January of 2015, we adopted this dog and I thought he was supposed to be a mini schnauzer. And then I found out he was a Jack Russell terrier and a Jack Russell terrier is very different because he’s like caffeine on legs and like jumpy and barking and yipping. And when I found out and I brought the dog, his name is Teddy. I brought him to the vet and the vet told me that. I said, I’m not telling my husband because he’s going to kill me because he doesn’t he didn’t want a second talk to begin with and now we have a super caffeinated dog.

So I got to do a little writing about having my dog and having a puppy. And how probably a very I didn’t think that through very well. But he added a little color and life to a very dark period of time.

Dianna Gunn: [00:21:46] Puppies do that,

Meredith O’Brien: [00:21:48] They do.

Dianna Gunn: [00:21:49]  Pets in general are a really wondrous thing.

Meredith O’Brien: [00:21:53] And it’s funny people, I’ve been reading articles that during the depths, at least in New England, the depths of this covid lockdown, people have been adopting pets like people think shelters were being were were being cleared out. I have a friend who even mocked me for my pets. She’s just like an anti pet. She got a rescue dog. I’m like, you know, you got a pet. Did you really think this? So it’s like, so everybody who has been in this covid lockdown, we don’t know where our lives are going. Everything seems out of control. Everybody wanted something warm and fuzzy to hold on to that moment.

Dianna Gunn: [00:22:29] Absolutely. And honestly, I think that life in general is just better when you have something warm and furry that you can cuddle on bad days, because even when it’s not a pandemic, we all have crappy days.We just happen to have a lot more of them right now.

Meredith O’Brien: [00:22:53] Yeah. Absolutely.

Dianna Gunn: [00:22:58] All right, so moving from Uncomfortably Numb to the broader scope of media and stories, how would you like to see the stories that are told about disabled people in our culture right now, change in the coming years?

Meredith O’Brien: [00:23:16] I think of it in two different ways, I think that I want to hear from more from the voices of the people who are actually dealing with the chronic illnesses, not necessarily the doctors or the or the pharmaceutical producers, but the people. And I’d like to see fewer popular culture depictions of diseases that are built up so that they are like really scary because scary, dramatic illnesses make for great ratings and box office and clicks. Like, I was thinking about this and I was thinking that in the months after I was diagnosed with MS. It’s like it’s like you suddenly if you’re suddenly laid off or you’re suddenly ill or so you’re divorced, suddenly you see divorces everywhere or someone laid off. Well, I started seeing MS everywhere because I wasn’t paying attention to it before. And I remember and recognize one of my favorite shows. The West Wing had the lead character. What the president had MS. But when I first watch it, it didn’t really make much of an impression. And so I thought it was cool. Yeah. Here is a presidential character with MS.

But then new shows that came out after I had been diagnosed would depict MS as a really a deadly disease that like it would kill you. And it was the same with everyone. And there was this one show in particular where there was a character, a police officer whose girlfriend got diagnosed with MS.

And then the police officer boyfriend talks to his doctor friend and says, she MS, what are we going to do? And the doctor says, oh, it’s going to get ugly. It’s going to get ugly and it’s going to get fast. And we know exactly how it’s going to go down and basically asking him, do you want to dump her or not? And then to make it worse, the social media I can’t remember if it’s Facebook or Twitter, but the social media account for that show. Ask the fans of the show. Do you think that Sergeant So-and-so, what would you do in his in his place, which is basically saying, would you dump your your sick girlfriend or would you move on because it might get messy. And I’m like, what the heck? And I saw it.

And that made me really angry because and MS is a very they call it like a lot of autoimmune disease where a snowflake in its presentation, like M.S. is damage done to the brain and to the spinal cord by the immune system. And the symptoms that you get depends on where in your brain and spinal cord the damage occurs. So if I could get damage to my optical nerves or to the nerves that control my legs and then I have symptoms related to that, or right now I have damage in the area that controls heat regulation and I have problems in the heat. I have other other issues, other issues that other MS patients don’t have. There’s not one typical MS patient.

What I would love to see is to have fewer dire deadly, scary depictions of people with illness. There’s someone to be afraid of or someone to be pitying. And more of kind of this is life like millions of people have illnesses like this. Let’s just make the regular characters and not the focus of something like an after school special. It’s just it’s for me. When I when I first plunged into popular culture after my diagnosis, it was unnerving to see that. And I would really love that to change, to have people with different illnesses just worked into the fabric of stories and movies because we’re worked into the fabric and stories of everyone’s lives.

Dianna Gunn: [00:27:07] Yeah, absolutely, well said. That brings me to our final question, which is where can people go to find out more about you and to grab a copy of Uncomfortably Numb,

Meredith O’Brien: [00:27:21] Which we all encourage, grabbing copies of Uncomfortably Numb? Well, there’s I have an Amazon page so you can find the book there. I have a website. It’s MeridithEOBrien.com. You have to remember the E in the middle. I’m on Twitter and Instagram at Meridith O’Brien, shockingly enough, without the apostrophe.

And then I also just recently joined a book group.. Let me rephrase a group of authors whose books all came out during this commit mass and were called Authors in Pajamas. And I still have to. I have to I have to order my pajamas. But what we’re supposed to do is look like a clearing house for book groups are book clubs. If they want to have an author wearing pajamas, zoom in to their book club and talk about their book.

And if you want information about that, Authors in Pajamas has has an Instagram account and that can give you all the information. But yeah, there are many different avenues to share information. But it’s been as you know, you’re in this book, book, book world. It’s been kind of crazy to try to promote any books in the middle of a pandemic. You feel a little bad about it. Like, but yeah.

Dianna Gunn: [00:28:37] See, the thing is, I was supposed to release a book actually next month, but the pandemic has delayed that till next year. So I haven’t actually been really trying to market any books during this whole fiasco. So I don’t really know your struggle, but I do understand writing in pajamas and I might even be wearing pajama bottoms right now. So I appreciate your group. We are kindred spirits.

Meredith O’Brien: [00:29:08] Awesome.

Dianna Gunn: [00:29:09] And I look forward to seeing more of your work. Thank you for joining us and. 

Meredith O’Brien: [00:29:16] Thank you for for doing this podcast. And thank you for having me on.

Dianna Gunn: [00:29:21] Yeah. Happy. They’re not happy, but good luck surviving 2020. That’s what I’m saying at the end of podcasts now.

Meredith O’Brien: [00:29:29] Thank you. You too.

[00:29:33] Thanks for listening to this week’s episode of the Spoonie Authors’ podcast. The Spoonie Authors podcast is part of the Spoonie Authors Network, a community initiative devoted to sharing the stories of disabled authors and educating abled people about what life is like for disabled creatives. Transcripts of this podcast are also available on the Spoonie Authors Network. To learn more or become a contributor, visit SpoonieAuthorsNetwork.blog And of course, if you enjoyed this podcast, make sure to leave a five star review on your favorite podcast streaming platform.

One thought on “The Grief of a New Disability and More with Meredith O’Brien: A Spoonie Authors Podcast

  1. Pingback: podcasts, youtube series feature ‘uncomfortably numb’ – Meredith OBrien

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