Mental Health: Coping Strategies for the Patient and Caregiver

SPEAKERS

Cristol Barrett O’Loughlin, Carrie, Melanie K.

Melanie K.  00:00

All right. Hi everyone, and welcome to our Educational Series, our webinar series for 2020. And a wonderful topic today, Mental Health Coping Strategies for the PFIC Patients and Caregiver. A much needed discussion. Before we go ahead and I introduce you to our fabulous speaker, we do want to say a special thanks to our sponsors, Mirum Pharmaceuticals and Albireo Pharmaceuticals. We do also receive a grant from Global Genes and we’re, we’re in proud collaboration with the Rare Foundation Alliance. 

A few disclaimers before we go ahead. We’re not giving any medical advice today. If you do have any specific medical requests, medical questions, please always consult your doctor. Yeah, and enjoy the information. Also, another disclaimer, the Zoom platform we’re using is not HIPAA compliant. So disclosing any personal information or revealing information within the group, we cannot guarantee that that is, yeah, ……it’s not on our compliance platform. So just be careful when sharing medical information or personal details. And also to let you know, we will be recording today’s session and we will be making this session available at a later date on our website to the general public. So a little bit about the PFIC Network. 

Just as way of a quick introduction. My name is Melanie Karakaidos. I’m the president of the PFIC Network. And as you can probably tell from my accent, I live in Australia and I work with the most beautiful team…or board of directors. We have our mission is grounded in four pillars of support, research, education and advocacy. Thanks, Carrie. Haha.

Carrie  02:12

 Sorry. 

Melanie K.  02:13

That’s all right haha. And so yeah, we are led by our Executive Director, Emily Ventura, who does the most amazing work. I’m the president. We have Tara Kearns, in the US. Lisa Crompton in Canada. Hayley Watts, who also in the US and Walter Perez in Canada. So we already have quite a global reach. We have a Medical Advisory Board and a wonderful advisory board helps us prioritize the needs of our community and they also help guide us in the right direction as we go forward making decisions. If you have any questions as we go along for Cristol, please use the chat feature that should be at the bottom of your screen

 And at the end, if Cristol has the time…. we would…. yes she does. She would be more than happy to answer your questions. So feel free to to ask questions as you go. So it’s my great pleasure now to introduce Cristol Barrett O’Loughlin , I had watched her TEDx talk and got a little bit obsessed with tracking her down because I knew I know that our community needs to hear from Cristol. Take it away.

Cristol Barrett O’Loughlin  03:39

Thank you so much, Melanie. That’s such a heartfelt introduction. Well, I’m joining you from sunny Southern California today, so this truly is such a testimony to the global nature of our rare community, right, that we can connect with each other across all of these different time zones. And I’m just reminiscing about my amazing time in Sydney and Australia and along the Gold Coast with the family, so it’s really great to hear the accent.

Melanie K.  04:18

Me too right now. I can’t get there haha.

Cristol Barrett O’Loughlin  04:21

Haha. Yeah, absolutely. Well, I really am very honored. So thank you. And we’ll go ahead and jump in and I loved some of the elements that you brought into the beginning of this introduction, which is, you know, the focus of what I would like to talk to everyone about today is your role as caregivers. And so what we will not be doing is any sort of medical advice or really focus on symptom management or in many respects the patient experience. The… our intent today is to focus on the caregivers in our rare families and make that as inclusive as we can of the whole family experience. Because I think that’s what we find in rare disease is that one person in the family has a rare disease, the whole family has the rare experience. 

But Angel Aid is all about caring for the caregivers. That’s what the TEDx is about, that Melanie mentioned. And it really has been kind of a lifetime of soul searching, perspective, experience, reconciling of emotions, you know, that that is brought us to this day and this moment, and this sharing. So what I offer to you is not a medical perspective. I offer you my my personal perspective, or family perspective, based on our experience with rare disease, but also our belief that we can uplift the whole family by really focusing on the caregiver. And in so many cases, that is the mother in the family. So 82% of the time, the primary caregiver can be the mother, tends to be the mother. 

And so it’s our belief at Angel Aid that we uplift the family by uplifting the mother and that everybody benefits. So definitely not an exclusion of fathers or spouses or any other family members. it’s just an entry point for us into the discussion. So I hope that you find today’s conversation, a conversation, so feel free to jump in. I love questions along the way, or we can address them at the end. I have set a timer, so I will keep myself stepping through so we make sure that we have that time for q&a at the end. So so let’s get started. 

Cristol Barrett O’Loughlin  07:18

So I know when I take the time to actually sit down and listen to a podcast or, you know, join in on a webinar, I kind of like to know where I’m going haha. So help me understand where we’re gonna go in this conversation.  I thought we’d start a bit on the Barrett family and our personal experience. So I’ll share a rare love story with you and then we’ll talk about sensory self care. And this is a perspective on those kind of micro moments a day, that as an individual, you can find ways to ritualize self care. Because the number one thing we hear in the caregiving community and in rare families is “I don’t have time. I don’t have time for self care”, right.

 And so respectfully challenging that notion with, “Okay, everybody can find a few micro moments a day.” and so we’ll talk about some strategies that we have there. Then also, just some tools that we have, and experiences and stories that we’ve shared of other rare families. And again, we don’t support one specific, rare disease community. We’re very reflective of Global Genes and some of the other organizations that are across, you know, across all rare diseases. And so we’ll let you know about another broadcast that we have that shares the stories of, of seven very inspirational families, if you want to continue on this journey around self care, and then we’ll have a q&a at the end. Okay, so the love story. So the love story starts with my parents, Richard and Phyllis Barrett.

 They met in high school and fell deeply in love and married in 1963. And they really wanted to have a big family. They knew right from the get go. So within eight years, they had a basketball team of kids, which is five children. And you can see there on the left, my oldest brother Richard and there I am on the bottom right, just eight years apart. In between, we have David, Jared and Randy and then of course, my young mother, Phyllis with all of her endless energy.

And one of the things that she noticed, because Richard was her eldest and was developing, you know, through his childhood milestones normally, was that David, Jared and Randy were missing milestones. They were starting to crawl, starting to talk and babble, potty train, you know, all of those things that those progressions that that infants go through and they were each starting to miss various different milestones. 

And she kept going back into the pediatrician. And we’ve been on that diagnostic odyssey, right, where it’s like, you know, instinctually in your heart, that something’s not quite right. She kept going back into the pediatrician and they were saying, you know, “Well, not all children can be as gifted as Richard” and, you know, “Jared’s a colicky baby” and and, you know, Randy, you know, and so she would get this, like, misdiagnosis or this, maybe setting aside of her worries.

And it wasn’t until she went in and she showed the pediatrician, “Why can’t David straighten his arm?” that the pediatrician really paid attention to that symptom and said, “Okay, yes, there’s something going on here.” And they confirmed, really, you know, a parent’s worst nightmare, that is, three of your five children have a very, very rare genetic disease called mucopolysaccharidosis, also known as Hunter syndrome, and that there is no treatment, and there’s no cure for this disease. 

So Randy, David and Jared passed away in their teens. MPS really tore our family apart. My parents, trying to care for two healthy children and three terminally ill children and just the stress of that and, and the lack of available resources and the lack of answers and the lack of really applicable symptoms, you know, what, “What can I do to solve this problem?”, they’re just, it’s just that patchwork of daily existence and struggle without resolution. And, and what I can tell you in this, in this very sad story is that my brothers were very close to my brother and I. That, you know, being around a special needs child, you, you know, that there’s this love.

 And I could always tell when my, even though my brothers couldn’t speak in words, I could always tell if they were happy or sad, you know. The joyous moments were the highest highs and the and the difficult moments were the lowest lows, but there was a lot of love and a lot of honoring in each of their passing. And as I mentioned to you, my parents did break apart. But I promise you at the end of this presentation, I will give you the the end to this love story because it didn’t stop here.

Cristol Barrett O’Loughlin  13:08

 But as life tends to do, it did go on. And I you know, tucked away those memories and those feelings into my heart and moved into high school and college, met and married the love of my life, Jim O’Loughlin, and we had a child. And that was no easy task. I’m a carrier of MPS disease. And our daughter, Chloe, is also a carrier of MPS. So here you have three generations, myself, our daughter and my mother, and as a family, you know, have made a commitment to really do all we can for the MPS community.

So I’ve had this incredible opportunity to witness philanthropy. And, and what I mean by that is that desire to take a difficult circumstance and try to turn it into something positive, to put some purpose to the pain, you know, that we as a family have gone through and that we know other families are going through. And so like so many in the rare disease community, we started raising funds. I started Angel Aid in the year 2000 with a group of Pi Beta Phi sorority sisters from UCLA and our intent was to cure MPS disease that you know, we were going to do everything that we could to cure MPs disease.

And so for 18 years, you know, we’ve been throwing parties because that’s, that’s what we knew how to do was just raise the money. We didn’t have the scientific know how. We didn’t know or really have the the commitment at the time to really focus on you know, shepherding through the research grant process, and you know all of the detail around that. But we knew if we raise the funds, we could partner with somebody. So the national MPS Society,received our funds, and shepherd, they were wonderful shepherds of those of those dollars raised. 

And we actually released a research grant, back in 2003, that went on to become a clinical trial. Then the FDA approved treatment for one specific type of MPS disease. And so now, I am meeting young men that would have passed away in their teens, are getting infusions every week, and going off to college. So it’s this like, incredible 360 of, you know, pain, finding the purpose, doing what we can, you know, within reason, partnering with the right folks and watching philanthropy, go through that, you know, that cycle and become an approved, approved treatment. And, you know, we’re one of the 5% of rare diseases that have a treatment. Again, just for this one specific type of MPS. There are seven different types of course. 

You know, there’s lots of complexity in the in the rare disease community there. But I’m just so grateful for the ability to have witnessed that progression. It got me thinking a few years ago, “Okay, what, what has changed in the rare disease community and what can we do more?” What, what additional resources could we, you know, possibly apply? And, of course, we continue to raise money for MPS, because a treatment is not a cure.

And we do need to get to that state, that curative state. Especially since my daughter is a carrier and I know she’s going to have to make decisions in the future. But this question of “Why me?” comes up, right. It comes up for me. It comes up for every member of our family. And I imagine for anyone that’s taking the time to listen to this, this webinar that, you know, “Why me?”. And I think this is the universal question right now, right?

 I mean, we are collectively in humanity, asking this question. Why are all of these very difficult things happening in the world today? And there’s so many different answers to that question. It’s a philosophical question. And I revisit it all the time very often, but in the context of rare disease, and the rare disease community, that question led to, like a revisit of of trends. What’s happening in rare disease over the last 10 years? Because it used to be every micro community, like PFIC, like MPS disease, right, we would be very focused and fixated on our own disease, our own research, our own family members, our own doctors, our you know, our own support structure. 

And the beautiful thing that has happened in rare disease is that as a community, we’ve started identifying with the broader community of rare disease. That we’ve realized that, yes, our circumstances are unique, our children are unique, their diseases are unique, but our collective experience is, is not as unique as we as we once thought. And that especially as the patriarchs and matriarchs and the caregivers within these families, that we can find comfort in our collective experience. That we can, we can find peace, we can find commonality and we can learn from each other, just like the scientists are doing, right. 

They’re starting to collect data and, and you know, federate some of these, these capabilities and these scientific advancements across multiple disease states. And I do believe that in our lifetime, we’re going to start seeing more and more treatments, and we will see cures for these diseases in our lifetime. And that’s an incredible statement because my my parents are celebrating their 77th birthday, right. You know, both my mother and my father are turning 77 this year and they’ve been waiting for that day, the cure, the day that a cure is going to come. 

And I hope that in their lifetime it comes. But I really do believe in our lifetime in our generation, I’m turning 50 this year, and I’m going to live to 100, so in the next 50 years, but hopefully sooner than that, we’re going to start seeing some cures for these diseases. And in the meantime, families are suffering. Families are suffering. Patients are suffering. Caregivers are suffering. We know this. We’re all part of this community together. And so that collective experience, and that awareness that we are part of this broader group is so important. 

And so if you haven’t seen these statistics, I’d be shocked, but let me just show them to you, you know, and put some, some numbers behind what I mean by that, by that collective experience. These are straight from Global Genes, and the numbers are ticking up all the time. But 350 million people suffering from a rare disease globally. More than AIDS and cancer combined. 7,000 different types of rare diseases. I think that number is closer to 8,000 now. So 7000 to 8000 problems with, with not specific answers just yet, and, and only 5% with treatments. And so when you look at that, what started waking me up every day was, “Wait a second! 50 years later, not that much has changed.” 

Not that much has changed for the caregivers, in the families, right? For my mother. The mothers of the world, and the fathers, right and the families that that people are still waking up every day, fighting for the life of their child, managing through these symptoms, reconciling their emotions, asking that question, the “Why me?” question. Right. And even if it’s not, “Why me?”, it could be a million other questions that we’re asking ourselves, right. So don’t fixate on that as the only question. 

But just looking for answers and looking for relief. Really looking and searching for relief, because it is so challenging to even imagine, even imagine what it’s like to wake up every day, and go to bed every day with these feelings. 

Cristol Barrett O’Loughlin  22:33

So so I made a decision to set aside my life in corporate America and move out of marketing and advertising. I had worked at IBM in the life sciences division of IBM, so I could see and stay close to so many of these, these trends and say these statements with, you know, hopefully some semblance of knowledge that we are going to cure some of these diseases in our lifetime and, and look maybe a bit more holistically at this challenge and and realizing that there are specific pockets of relief within hospital communities, within churches, within our families, and friend networks and schools. There are pockets of relief.

 But holistically, we have not tackled this problem, this how do we bring relief to the caregivers so that they can keep waking up every day, and finding some relief, but also sense of renewal and connectedness in this experience. And so that is the goal of Angel Aid is to connect 3.5 million rare mothers by 2025. It seems like a huge goal, but it’s actually only 1% right of the total community, of 350 million families. And the thinking is that every family, certainly there’s exceptions to this, but every family has a mother at some point involved. So so just 1%. We’re just starting with 1%. But we believe that in this connection, in bringing caregivers together, and so I encourage you to adopt this model, if you haven’t already. 

To really think about how to connect with other mothers within your own community or come into ours if you’re you know, looking for that connection. Because what we’ve realized and the pandemic has, oh my gosh, brought this full circle for us, to do that connection that we’ve got to provide secure, scalable solutions. That we’ve got to have mobile first experiences where mothers and caregivers and our community of rare families can come together and they can connect easily. And certainly social media is out there and has proven that model out. But that can be really noisy. We know from talking to our rare families that I won’t name the platforms, but it can be exhausting to connect on those platforms. You’re seeing feeds from friends and family. 

There’s this feeling of responsibility to constantly need to provide updates and things like that. And it’s just like, “Ah, I just want to connect and be honest. I’m not having a great day today. This isn’t a great day.” So in our environment, we we have a dedicated, app based experience. And we we provide a wellness program that we licensed from a mental health professional named Dr. Laura Reardon. It’s called The Sustainable Mom. And it’s resiliency training and it’s, it’s a reminder that inside the context of all these different roles we fulfill as, as caregivers and as women, we are at the core, our own entity, we are our own individual. And yes, we are taking care of our children and that can be very challenging, and heart wrenching in the circumstances of their life. 

But we are our own individual as well in the context of that. So Sustainable Mom is all about providing some awareness of how to, to manage through those different roles. Our community is about bringing caregivers together to find relief in each other. Not problem solving, not symptom management, not discussion about research and science, and all of those other discussions that are so important for you to have in a different forum. Here in our environment, and whether you create, join into the Angel Aid environment, or you create your own community that provides this for you, but it’s so important to just have some safe place where you can talk about your own feelings, and your own needs, and ask for help. And and it’s amazing what happens when you ask the universe, when you ask your community for help. 

You know that help will be presented to you, I firmly believe that. We also have a group of health and wellness practitioners that are just amazing sources of relief in their own modality. So they might and I mentioned them because you might find relief in non traditional ways. So we have equine therapists that work you know with horses and use animal therapy. I just had a person reach out to me about doing drama therapy and singing, using singing and dance and you know, just like expressiveness with your body as a as a stress reliever. We’ve got yoga, you know, traditional modalities like yoga and meditation and nutrition, and running clubs and journaling. 

And you know, so like, pick your flavor. Find what sustains you. Go to your passions. Think back to your teens, you know, before you became a parent, or a patient, potentially, right? Think back into parts of your life that may not be at the forefront right now and try to find those moments of inspiration and then dig in and find those resources. And that’s what we do in our communities. We’re always trying to bring new and novel sources of relief to the community. We do focus on mothers. We know that that mothers are living with courage every day and just deep deep courage. And stories are so important to that and the reason we know that is because we asked the moms, “Okay, short of a treatment or a cure, what can we do to bring relief?” 

And here’s what mothers said to us, “A listening ear without judgment.” So you don’t need to fix it. Just listen to me and just hear me out, right. Stories that are similar to mine, so that I know I’m not crazy, right? I just need to hear that someone else on the planet is going through something similar. It doesn’t have to be exactly the same, just something similar. And just a little bit of time and inspiration to help me do things for myself. Maybe even permission, you know, to do things for myself. So that concept of self care. And so this research study is ongoing. And if you go to our website, right on the homepage there, we really, really want to hear from the community. 

So and it’s a quick five minute survey. So if you if you want to participate, we rerelease the results with different examples. But the patterns seem consistent: connection, community, and self care. And one of the questions that we always ask our community is :”On a scale of one to 10, how supported do you feel?” So one is hardly supported at all, and 10 is, you know, fully supported, exceptionally supported. And so what we find is that caregivers that respond back in the six to 10 range, Angel Aid is, is more like a wellness company, right….or an organization because we’re not a company, we’re an organization. 

So we we provide, you know, inspiration and self care and opportunities to do yoga and meditation and the various different modalities that I talked about. But for mothers and caregivers that are in the one to five range, that is an indication of deep crisis, right. This this could be this could be, “I really, I really need some crisis intervention”.

And the the mothers and the caregivers that were reporting in the one, those that kept me awake at night. I was getting really worried about about that group. Because that that’s just a vulnerability, that’s like, “I’m feeling rock bottom at this point”, right. And so we have this amazing partnership with Microsoft. Microsoft helped us actually digitize Sustainable Mom and digitize our health and wellness experiences, and actually launch our online portal, our community portal. And we did all that in just a couple of months, earlier this year. 

So now what we’re finding is that we’ve got one to five rare mothers a day joining our online community. So our plans to go global, like were accelerated by the pandemic, not, you know, held back. If anything, we’ve been thrust into our business plan, you know, our strategy from a year or two down the road. So what we, what we were able to do this summer is actually launch a set of crisis resources. And I bring them to your attention so that you, and anyone you know, or any of your community members are aware that these resources are available, and they are global resources. So if you go to AngelAidCares.org/resources, you’ll see on the bottom, you know, the right top right of the page, there’s crisis support, there’s help lines and 24/7 support lines.

 And if you scroll to the bottom of the page, what you actually see is rare disease help lines. So if you click on that link, it will take you through to 800 numbers and websites in 35 countries around the world have resources that are dedicated to rare disease, okay, crisis support. And then we do have, and this is a US based 800 number, but the Crisis Text Line is, is ubiquitous. So you can text 741741 and, you know, get into a text exchange with a with a mental health professional. 

So now we’ve got this 24/7 support, which I think for any rare community is so important to know that it exists. And it’s not driven by Angel Aid, so it’s available to any any of you all to take advantage of and also, you know, link through to on your own experiences. I just wanted to bring your attention to that. That helps me sleep at night a bit, knowing knowing that there’s some 24/7 support there. 

Cristol Barrett O’Loughlin  34:34

And then really circling back to that belief system. So we talked about the question of “Why me?” and we talked about this evolution of how we as Angel Aid got to this point and what we believe in it. One of the things that I will share with you is that Angel Aid believes that suffering sows the seeds of empathy. That unless you’ve been through something yourself, how can you possibly really truly be there for someone else. And it’s this concept of other, that otherness, that, that, that “I’ve had this experience. I’m still trying to figure it out. But I see you. 

I see that you’re going through something similar. It may not be exactly the same thing. But I see that you are in pain.” That’s what makes us human. It’s that idea of empathy. That, when we see someone else in a painful state, when we see someone hurting, we want to help that person. And, and that is what makes us unique from any other, you know, living heart on the planet, is that is that we can have empathy for others. And what I offer to you is, in having empathy for others, and recognizing that, that is our commonality. That’s what makes us human.

 You’ve got to have empathy for yourself. That you are worthy of the same love of the same energy of the same caring heart that you give to others. Whether that is your child, that is your partner, your parent, work, any of the, the beating hearts that you are taking care of on the planet, you are worthy of that same love and support, and that you have got to take care of yourself, before you can take care of other people. And we know this intellectually. It’s just so hard. It’s so hard to carve out that that place, right, that space in your heart. And, and, and so in recognizing that, that you’re worthy and I’ll just keep saying it, because I don’t think any of us hear it enough, that you are worthy of that same love that you give to others. 

Taking those micro moments a day for yourself, that’s important. That’s not something to feel guilty about. That’s not something to feel secondary on the list. That is, that is your fortitude to get through the next day. And whatever that tool is that you are investing in for yourself, do that, do more of that. Do that again and again and again. Right. And so just to prove the point, we’re going to take a few moments for ourself. There’s just never a reason why you can’t do that. So I just ask everybody on the phone and across the time zones, just set down anything that’s in your hands. Put your feet flat on the ground. You can close your eyes if you’d like. And we’re going to take three deep breaths together. 

Cristol Barrett O’Loughlin  38:51

And inhale in and exhale out.

Cristol Barrett O’Loughlin  39:05

And a deep inhale in and exhale out

Cristol Barrett O’Loughlin  39:22

Inhale in and exhale out

Cristol Barrett O’Loughlin  39:39

You can open your eyes. Thank you for trusting me. Notice your body and your brain and your heart and how calm that feeling is, and it’s just a couple of minutes. It’s the easiest tool in the in the world, right. And you can use it, you can call upon that tool anytime you need it. If you have to step out of a room, step into a hallway, close the bathroom door, light a candle, during your bath, whatever that moment is. Heal yourself first and then take care of others. Do everybody a favor including yourself. Okay. Okay. 

Cristol Barrett O’Loughlin  40:40

So rare resilience. This is moving ahead in that agenda, right. Our community suffers from something I think is a little different. So many of us have heard of that concept of PTSD, post traumatic stress. We hear about it especially in in, in relation to military and veteran communities, right, and war time kind of experiences or natural disasters. And it’s this idea that something has happened, and then you know, you’re in a recovery state and I don’t think that that applies in our world, that we are in this chronic state of trauma and stress every every day, every night.

 Melanie and the team have shared with me some of the challenges that you face in your community and in your families and with your, your children and your patient community. And I want you to know that I see you that my heart goes out to you. My empathy lies with you. And as I light my candle every morning, you will be right there with me. Okay, okay. I wish I could solve this and I know that I can’t. So what I offer you is find peace and comfort in each other. Find peace and comfort in your collective experience. Come to Angel Aid, we will do what we can to support you. And just know that you’re not alone. You’re not alone in this experience because it can be very isolating. Okay, okay. Okay, so I’m a crier. 

Now, you know that about me haha. I thought I would offer, for the intellects, offer the left brainers of the crew, there’s a practitioner in our network, named Dr. Elissa Epel, she published to co co authored a book and published “The Telomere Effect”. And this is Nobel Prize winning research on the effects of chronic stress on your body and on telomeres. Telomeres are these little receptacles. You can’t see them under a microscope. Through nanotechnology, you can see them.

But basically what they are is they’re these, the endings of each of your cells have these receptors and they get worn out with chronic stress. And at the end of your life, your telomeres have gone dark, right. That that connection can’t be established anymore. And the good news is you can repair your telomeres. It’s within your power to incorporate those rituals and those daily moments, those micro moments to care for yourself. 

Right. And we’ve talked about how important it is for you to do that because nobody is looking after you more than you. Right and it’s so easy for us to set that aside in service to others. But you’re gonna be better as a as a caregiver, as a father, as a mother, as a grandparent, as a son, as a service individual, you’re going to be better taking care of yourself in the context of taking care of others. So how do you do that you do all the really obvious thing. You already know.  I’m not going to give you any, anything new you haven’t heard before necessarily.

 Get more sleep. Start moving. Stay connected with each other. Find purpose in the pain, in this experience. And that over time is going to benefit you. Right. So if you need the science behind it, or even just the inspiration, you want to hear from Dr. Epel, buy “The Telomere Effect”. She’s amazing. You know, I sat down with Dr. Epel, and she’s shared this publicly, so I can share it with you. Her son has some some, some symptoms and some challenges and she didn’t realize it, but she’s a rare mother, as well. So she realized in that conversation, “Wait a second, I’m part of this community, and I didn’t even realize it”, right. So it’s amazing.

And one of the things that she talks about is gratitude. Finding something every single day to be grateful for. And it could be, “I sat up out of my bed today”. It could be “I actually brushed my hair today”. It could be “You know what? I remembered to set the coffeemaker last night and now the whole house smells so good, like coffee”, you know, or it could be “My child and I had that laugh and that smile, you know, today”. So these do not have to be huge moments. It’s micro moments of gratitude a day, but finding something, the practice. And you know, there’s all sorts of journals, and there’s so many different ways for you to incorporate that practice into your life.

But the way I do it is I sit down as my coffee is brewing in the morning, and I light a candle. And while I’m waiting for my coffee to brew, I just catalog quietly through the things that I’m grateful for. And you know, top of the list, I’m just glad to be alive. My brothers didn’t get that option. So I come from a place of deep, deep gratitude. I’m here on the planet, that’s a really lucky place to be. Okay, so that all sounds great Cristol…Haha can you give us a few more practical tips? So here’s what we’re gonna do. 

Cristol Barrett O’Loughlin  47:48

We’re going to talk about sensory self care. And the reason that we call this sensory self care is because then you can’t forget it haha. Because we all have five senses. We know what they are. And if you forget, you just remind yourself of what those five senses are. So we already talked about what Angel AId is all about. We’re all about wellness. We’re about community. We have our uplifting gifting program, where we actually ship out gifts to rare moms around the world. 

And it’s totally free programs. So definitely come to raremothers.org and sign up just so you can get your free gifts periodically. We don’t tell you when we’re going to send them but we send them out. We ship them, we have rare moms from nine different countries right now. So we’re shipping all over the world. But the five senses, okay. So the five senses, use those to reframe daily rituals. These are things that you’re already doing in your day, and just doing a slight change can make them in service to yourself. Okay, so what do we mean by that? Touch, taste, sound, smell and sight. Right. Those are our five senses. Here’s a visual for the graphically, sight-oriented people so you don’t forget. 

So if you need some inspiration, just remember, touch taste, sight, sound and smell and something will trigger your brain and you’ll go “Oh, that’s right. Okay, I could do that. Let me try that for a day or a week or you know, something like that.” Okay, so touch. So, for me, I’m a super tactile person. I’ve got like this ultra cozy sweater on and super soft scarf going and I have my super fuzzy blanket. You know, I’m a tactile driven person. So my transition at the end of the day from work into mom and wife and mother and family life is to shed you know, the work clothes from the day and put on that cozy robe. My transition used to be Budweiser beer haha. 

And it’s not that I don’t condone having an alcoholic drink, but I just found that I was liking that just a little too much. So it went from like one or two to three or four and I realized, probably not a great transition tactic for me and I’m gonna see if I can flip that into something a little bit more positive. So still having a beer now and again, during the week, a non alcoholic beer, just because I want to keep my wits about me. But at the same time, now I’ve reframed the daily ritual. Gotta have a transition.

Now the transition is get into something really soft and cozy. Right. So that’s one tool, you can think about using. Taste. So some people are really taste oriented, my husband in particular, so Turquoise River tea, is because, you know, I found myself also having three and four cups of coffee, and then you get that like, “Whoa!” like that caffeine, you know, “Whoa, that’s a little too much.” 

One of our practitioners actually owns a farm in Idaho and grows all these amazing medicinal plants and flowers and things like that. So Turquoise River tea is it could be this or it could be anything else. Maybe you use sustainably source your coffee, you know, from some sort of inspirational grower or, you know, you you find some, some sort of, like sweet like stevia or something that maybe is a sugar substitute, you know, that’s good for you and you put that into a hot drink, or maybe you prefer a cold drink in the afternoon. But whatever it is, think about when you’re taking in food or or drink and reframe it into something that is a self care ritual. 

And then that way, every sip you’re taking, you’re reminding yourself that you’re doing something for yourself. And you might only have that minute a day, so you know, this is why it becomes such a powerful tactic. Because a minute reminder every day, is a really, it’s a really great self care ritual. So sound, some of us are very auditory driven. Playing music, creating music of any kind, turning off soft turning on soft music in the background.

Some people also are really into these meditation apps, and books on tape, and Audible and all of these different things. Insight Timer is the world’s most downloaded meditation app. And there’s just millions of meditations available for free for everything, sleep, stress, you name it. Headspace as well. Padma Gordon’s one of our health and wellness practitioners, and has meditations available if you don’t want to download an app and you just want to visit a website on your desktop or something. 

Here’s a resource for you. But think about sound as a self care ritual. Smell as a self care ritual. Using essential oils. So you can buy the essential oils, and here’s a resource but doesn’t have to be. Just be mindful of peeling an orange and taking the, the rind of the orange and twisting it. Getting that oil, rub it on your you know, on your wrists, and suddenly, that’s your refresh, right. And sometimes I’ll take essential oils, and I’ll add them into my candle, and then light the candle, you know, and get like two different self care rituals at one time. 

And then sight. So I’m big on Wonder Woman. Love her. But really just visual reminders of things that empower you. And it could be, you know, a sweatshirt from your favorite rugby team. Like it does not have to be a piece of jewelry. It’s whatever inspires you that when you see yourself in the mirror, you’re like, “Oh, that’s that visual reminder. Look how strong I am.” or, you know, like, you know, “I can survive” sort of mentality there. So, what I will also say is that even those micro moments, and those are like little rituals, you might have to be really radical. And I’m just gonna stand up and say this, you might have to be really radical in your self care.

 And by that I mean people in your family unit and your friends unit and your colleagues, they’re used to you acting a certain way. They’re not used to you closing the door, when you take a bath so that you can light a candle or adding something special and fun to the coffee, right. They’re not used to you making these little changes and you might have to be kind of radical in protecting that self care ritual, you know. “I’m going for my walk. I’ll be back in 25 minutes to make dinner”, right? So I am telling you…. protect it and empower yourself and, and don’t worry if it’s uncomfortable. They’ll get used to it, okay. They will get used to it, so take that time for yourself. 

Cristol Barrett O’Loughlin  55:25

Okay, I promised you a happy ending to the love story. We’re coming towards the end here. So, remember that couple? Richard and Phyllis Barrett. So they divorced, as I mentioned to you, over all the stress, and they each remarried twice. The first time, or the second time, short term marriages. The third time long term marriages, 20 year long marriages, They widowed within a year of each other, the same year that our daughter Chloe was born. And they found their way back to each other. Their collective experience of difficulty and pain, brought them with through a whole lot of love and forgiveness and empathy back into each other’s hearts. And so they’re back together again. They were apart for 35 years. 

They’ve been back together for almost 14 years now. So I just thought I would share a real life love story and also hope for the future. That there they are, the consummate caregivers, having lost three of their five children, and still finding joy in in each other and in the family and in every day. And so I share that story with you. I promised to offer you some resources. If you visit our website, AngelAidcares.org, you’ll see watch, watch watch all over the place. So you can watch our one hour broadcast on rare mothers and hear stories of other rare mothers, of course. It’s like a telethon. It’s a fundraiser and we always appreciate the support, but you can certainly just watch and hear the stories about what other rare families have been through. 

I know this goal is achievable. I know that we can connect 3.5 million rare mothers by 2025. We’re well on our way, and we invite you to join our community. And really what I offer to you is that whether it’s within your own community, or in the broader rare community that we find those moments of lift, we find our strength and our ability to stand in difficulty. Whether that be on a daily basis, or a yearly or a lifetime, we find that in the connectedness with other people.

And so please reach out if you need support. You know, pick up the phone and call your lifelong friend that you haven’t talked to in 25 years. You know, ask someone at church, ask someone at work, ask a neighbor, you know, for that 10 minutes so that you can go for a quick walk around the block. Whatever it is, we want to support you and we want to support each other as a human race. That’s basic humanity. That’s how we provide the lift. We are going to have an International Rare Mother of the Year award in May of next year, so you’ll be hearing more about that through Melanie. We’ll be sure to get those communications out. And I have a few minutes now for for q&a. If there’s any questions. I’m right at 55 minutes, haha so let me come off. 

Melanie K.  59:11

Thank you Cristol. That was amazing. Oh, my goodness, it was hard for me not to cry at times.

Melanie K.  59:20

 I think you know, our community is so desperate for treatments that will touch on the caregiver experience but we just haven’t had the space up until now. So I have to try and give you these questions without crying but the micro moments really resonated with me. And I I know for PFIC moms and caregivers, you’re not getting any sleep. Your baby’s scratching all the time. But thinking of those micro moments, as you suggested, for yourself. Just smelling the orange as you peel it and coming into the present moment….. I’m gonna cry when I say this, but something I thought of when you said that was, um, my daughter is eight and she’s currently doing well, but I was thinking back to when she was really sick and itchy and how horrible it was.

 But they were moments where she was smiling, and she was happy and she wants to hear about those moments. She says, “What was I like?” and I say “You were itchy and it was hard. But you loved it when your brother came into the room, or you loved it when he showed you the chickens.” And I think there’s such value in that, in those micro moments. Yeah, so it was just a correlation with that for me. And, like, even if you can’t do a two hour yoga practice, or go for a two hour massage, you can stop and take a few deep breaths and, you know, and know that there’s other mothers all around the world and caregivers facing what you are facing.

 That, in itself, just hearing you express that this is a common experience, and that you see us and that you know that this is more than just medical appointments and it’s more than just about the patient. It’s about the whole community. It’s about family and the team helping patients. So thank you. That was amazing.

Cristol Barrett O’Loughlin  59:20

Aww

1:01:38

Absolutely, absolutely. You were talking about your experience with your daughter, and I’m remembering one of our moms. We talk about her in our in our Mothers of Rare Experience broadcast. Her name was Monica and her son is 16. He’s 16. She’s been doing this for 16 years, right? And he, you know, now he’s big. She actually has to train. She has to train to protect herself. 

Melanie K.  1:02:09

Right

Cristol Barrett O’Loughlin  1:02:09

Because now he’s so big, he doesn’t have the mental, you know, awareness to to not accidentally injure her and, and, you know, her coffee ritual is like the lifesaver in the morning for her, like rejuvenating moment of “Okay, I’m gonna get through another day today.” And then aromatherapy in the afternoon, when she knows, “Okay, it’s three o’clock, and oh, my God, I’ve been doing this for hours. And now I’m, you know, a few five hours from bedtime, when I get relief.” Right. And it’s just…so yeah, those micro moments.

Melanie K.  1:02:49

It’s because it’s doable. You know, it’s yeah, we, I feel like, you know, I’ve seen different different practitioners myself who want you to go to a yoga class or something. And I’m like, “I just can’t fit that in”. But I can be grateful as my coffee is brewing and I can put on some essential oils and think about my day, and I want things to be. So I think your approach is just so beautiful, and holistic. We do have a few questions.

And I’m quite interested, in your perspective, being a sibling of three brothers with rare or brothers with a rare disease. So one of our questions was, it’s kind of in two parts. Do you…have you found any solutions or resources for siblings? And we also have teen and adult patients with PFIC in our community, that we’re really trying to find better ways to support and I wondered if you had a comment on that, from your perspective.

1:04:03

Yeah, really great. So we do have a few resources. Again, AngelAidcares.org/resources. There are a few resources for both siblings and we’re starting to add young adult resources as well. Because there’s this recognition, you know that it’s a whole different set of circumstances. Yeah, I used to do a lot of sibling presentations and what I will offer, maybe not in terms of a specific resource, what I will offer you is that your other children are going to be okay. They’re gonna be okay. Okay. They have their own relationship with your patient child. And, and yes, the family tends to organize around the patient. But what your, your, your other children, the siblings, have is this incredible empathy because they’re flexing it. 

And they and certainly there’s like, frustration and jealousy and rejection and like all of those, you know, you know, pay attention to me, there’s all of that too, of course. But, but those are the individuals I’ve seen, the majority of the time, that grow up to be these amazing humans, these amazing because they’ve been flexing that heart, empathy, muscle, their whole life, right their whole life. And part of for me, you know Chloe’s an only child, because because I’m an MPS carrier. I wanted her to grow up in the community, so that she could flex that, that muscle.

 And so I think, you know, a recognition that it’s hard, you know, and that there is a lot of responsibility, put put on siblings. But there’s an opportunity too, that they are superhuman compared to their peers, because of their life experience. And that that will make them go out into the world and do amazing things. I think those messages are deeply internalized. And so I I, I know my mother used to share those messages with me, and it made a really big difference. And there was a part two to your question, which was young adults, okay.

So young adults, in fact, Horizon Therapeutics named 2020, as the Year of the Young Adult, for their patient communities. So we’re starting to see more and more programs. In fact, Angel Aid is going to be releasing a program here, in just in the next couple of weeks. It’s a graphic novel program, where we’re going to be working with a small group of young adult patients, which we define, generally as ages 18 to 39. So there is kind of like 18, to 39 and across any rare disease, and the idea is to bring your story to the forefront, right. Who am I? Who am I in the context of this disease, but also in the broader world and what’s my story?

 And then, you know, create a graphic novel, that is reflective of that story and so more and more of these types of programs. I’ve heard about eight organizations have popped up in the in the last 12 months around young adults, communities bringing young adults together. And so I don’t have links to all of those. I can think of two, Melanie, that I can send you links for when we’re done here that you could share out. But any Google search, you’re going to find those communities. So my my suggestion is to think beyond PFIC. I’ve heard you say…think beyond that and tap into the broader rare disease community because trending, that’s what we’re seeing, is finding the collective experience, the commonality, in your experience opens up resources to you that weren’t available before.

Melanie K.  1:08:51

Yeah, that sounds amazing. We do have a Facebook group for our teens and young adults with PFIC, so we could pass those resources on to our teen leaders who are amazing. Yeah, that would be really wonderful, actually, to pursue that avenue further. Thank you. That there are two more questions. This one kind of comes from myself and Emily, because we are initiating monthly community calls, obviously, for our community, and we were just wondering, is this something that you have put in place specifically for Angel Aid, or something like this and any advice around that? 

Because it did resonate with me, where you said, it’s important to have a space when we’re not talking about treatments and we get to talk about ourselves. But I don’t I don’t want it to be too confronting…. I don’t know. I mean, it this is a these are new horizons for us because, as I said, we’ve been so focused on just trying to get a treatment.

Cristol Barrett O’Loughlin  1:10:01

Yeah, absolutely. I mean, I think in any group dynamic, it’s all about setting expectations and establishing kind of, you know, this collective understanding of this is what we’re going to talk about. Right. So in the Angel Aid community, you come in, you know we’re talking about your role as a caregiver and your role as potentially as a rare mother, although we’re not exclusive to that. e have subgroups within our, our, our online community, that are specific only to rare mothers, but we also have collective experiences that are for anybody that support rare mothers. But the dialogue is always about caregiving. 

And, and so we try to, in fact, we have a monthly group that’s run by a rare mother for rare mothers happening tonight at 7pm. Pacific. And, and, and so what she does is she establishes kind of the rules of engagement, the rules of conversation up front, you know. That we are gonna focus on on us and not on…. respectfully, not on managing symptoms, managing, you know, science, doing research. And then prompting with questions, because it can be hard to focus on yourself. It’s not your natural state. You want to focus on the comfort zone or the crisis, which is, you know, the situation versus the resolution or the possible relief, which is talking about your own feelings, right. And so that can be really, really tricky.

 Dr. Laura Reardon is, as I mentioned to you, she’s the author of Sustainable Mom, and she’s got some methods that she uses, you know, to, to learnings, like she she’ll call it the LOVE program, so Learnings, Opportunities, Victories, you know, and Exciting moments and so it’s so it just kind of forces you, like, all of those are focused on you. haha

Melanie K.  1:12:27

 Yeah.

Cristol Barrett O’Loughlin  1:12:28

 You know, and so you’re like, “Oh, okay, well, I guess I gotta talk about myself. Like, I can talk about any of those four things, but they’re all introspective prompts.” So you’re like, “Oh, okay.”

Melanie K.  1:12:40

it’s interesting, because I think and as a rare mother, I there’s such relief in that. But it’s also really scary, because it’s this space that we don’t…we aren’t usually at the forefront. 

Cristol Barrett O’Loughlin  1:12:53

Sure.

Melanie K.  1:12:54

 Yeah. So I think I think that’s really helpful and perhaps having topics to talk about and yeah, as you say, creating that space. So maybe we will encourage people to bring glass of wine or coffee, depending on your timezone and kind of chill out. Yeah. Um, yeah. So there was another question, which is a little bit heavier. And I know you’re not a psychologist, but you do have a wealth of knowledge. Sometimes we hear people say things like, I guess I’m asking you for advice when people or parents feel the guilt of passing on the disease to their child. You know, in a lot of peer support that Emily and I do we hear that “This is my fault and I can’t do anything.” So the helplessness and the guilt

Cristol Barrett O’Loughlin  1:13:54

I don’t know what to say to that. 

Melanie K.  1:13:56

I know it’s a big thing. But you know, part of me thinks just being heard, like you said before. Sometimes we just just want to be heard without saying, “Well, you should go for a walk.” or “You should do this”. But I wonder if you have had experience

Cristol Barrett O’Loughlin  1:14:14

Yeah, I you know, I I thought I thought a lot about that and I actually had a conversation with my mother about this earlier today. Guilt is such an interesting emotion. It’s, it’s it’s not your fault. It’s not your fault that this has happened. I hear I hear you. I hear what you…I..repeating back I hear, I hear these words. And I’m I’m letting you know that it’s not your fault. And I know that you know that and people know that. When you’re feeling guilty, you know that it’s not your fault. The thing is, the insidious side of this is that sometimes there’s implications that it is your fault. 

That you know, you hear it from and often it comes from people that are in distress of hearing your reality, that are trying to find a reason why this is happening. And so they project it back to you, that there’s something that you’ve done to cause this to happen, which is just simply not the case. And so whether that message, “It’s not your fault” is internalized naturally, just by supporting each other in community and saying the words. Because there’s power in hearing them, and even saying them to yourself in the mirror, “It’s not my fault. I didn’t cause this to happen. 

And this is an experience that my child, who is other from me, is going through, and I’m going to make that experience as good as I can, within my power, I’ll do everything I can, to to try to be there for my child that’s going through this experience.” So there’s power in those words, and there’s power in recognizing it. There’s power in writing about it. There’s power in sharing it, hearing it, seeing it. And sometimes that still isn’t enough. And when it’s not enough to help that person internalize it, then you might need to work with somebody professional, to find the other pathways into embracing that reality. Because that is the reality. It’s not your fault.

 But I’m not a mental health professional, as you said. I don’t have the training to get into the backdoors of how to internalize that. I’m just reflecting back that it’s a very normal feeling. And it’s not always just resolved. It’s like that question of “Why me?”. You come back to it again and again. You come back to feelings of guilt. And you come back to feelings of distress. You come back to feelings of hopelessness. You try to come up with strategies to to, to counter the feelings, right.

Melanie K.  1:17:53

Yeah. Yeah, absolutely. And I wanted to say, I think it’s so wonderful that on your website, there are global sources, that 35 different countries, I think you said, for people to reach out to to get support, specifically, with rare disease. I mean, that in itself, that’s something so valuable. And with your permission, I’d love to put that on our social media, because we are really expanding our reach, globally. And I like your point about the chronic… chronic rather than PTSD, chronic

Cristol Barrett O’Loughlin  1:18:30

CTSD. Yeah, I looked it up. I haven’t heard anybody else talking about it.

Melanie K.  1:18:34

I love it.

Cristol Barrett O’Loughlin  1:18:34

 That’s what I’d like my next TED Talk to be on is chronic traumatic  stress disorder

Cristol Barrett O’Loughlin  1:18:39

Because I think that’s a real thing. And there’s, there’s not enough dialogue happening happening in the mental health community on how to deal with chronic conditions. So that’s our reality. The beautiful thing I think about if there can be a silver lining in a pandemic experience is that we’re already living in this world haha. The rare disease world. We’ve already you know, welcomed…in fact, we have a video series that we’re doing now called “Welcome to Our World”

Melanie K.  1:18:39

Totally

Melanie K.  1:19:15

Right

Cristol Barrett O’Loughlin  1:19:17

We are already living the trifecta: medical uncertainty, you know,

Melanie K.  1:19:21

 Exactly. 

Cristol Barrett O’Loughlin  1:19:22

The isolation. Homeschooling, right, all of these are things that we’re we’ve been dealing with it for a while. But there’s an opportunity there to, to now create empathy. Right? Again, the purpose of suffering is to sow the seeds of empathy. So now you’ve got, on a global basis, a whole generation of people are experiencing these what we thought were unique experiences, the isolation, the medical uncertainty, the staying home, the homeschooling, you know. There was an opportunity to find some relief and some support by pointing out that collective experience. So you’re gonna hear a lot about collective trauma, collective healing, global experiences, I think in the coming years.

Melanie K.  1:20:16

Yeah, yeah. I mean, I really thank you. I think even just naming it feels like relief to me. And because it is chronic, and I always think, “Well, if it’s, if we or my child experiences PTSD, then doesn’t that mean it’s in the past?” That there was an illness that had an effect, and we all got better and moved on. But that is not the case. Even if you get a transplant, then you’ve got the burden of transplant to live with that’s ongoing. So I really appreciate you saying that and acknowledging that rare disease families around the world specifically for PFIC,

1:20:56

Okay, I’ll keep trying, I’ll keep I’ll keep trying to get that TED Talk going haha.

Melanie K.  1:21:02

I don’t want to keep you. I’ve we have gone over time. 

Cristol Barrett O’Loughlin  1:21:05

Haha it is like totally dark. I feel like I probably look like I’m in a witness protection program now because the lights are all dark around me, but I got my screen haha.

Melanie K.  1:21:14

Haha

Cristol Barrett O’Loughlin  1:21:14

 So. So thank you. I’m very grateful for this opportunity.

Melanie K.  1:21:20

It’s been wonderful. And we’re getting good, positive feedback. So I don’t think we’ve got any further questions. But I know on the behalf of our community, I just want to thank you from the bottom of our hearts. Your beautiful presentation is so much and we hope to continue to collaborate with you and use your amazing resources.

Cristol Barrett O’Loughlin  1:21:41

Absolutely. Thank you.

Melanie K.  1:21:43

Pleasure. Thank you so much.