On Get Social Health. We’re talking about a project called My MG Sole. It’s a new collective art project designed specifically for people with Myasthenia Gravis, a rare autoimmune condition. The goal of the project is to help people in the MG community defy social distancing by uniting them as an online community in this time of intense social distancing. The separation of those with chronic illnesses like MG from their family, friends, and community who truly understand what they may be experiencing, can feel like extreme social isolation. 

The project is sponsored by Argenx, Boston based biotechnology company. Developing treatments for severe autoimmune diseases. With me here today are Anneliese Hammerlund, an expressive arts therapist and mental health counselor from Grand Rapids, Michigan. Also joining the podcast is Susan Woolner. She is the neuroscience patient and caregiver support and community manager for Mercy Health Hauenstein Neurosciences, and now let’s find out more about My MG Sole on Get Social Health.

Announcer (01:10):

Welcome to Get Social Health. A conversation about social media and how it’s being used to help hospitals, social practices, healthcare practitioners and patients connect and engage via social media. Get Social Health brings you conversations with professionals actively working in the field and provides real life examples of healthcare, social media in action. Here is your host, Janet Kennedy.

Janet Kennedy (01:36):

Welcome to the My MG Sole Project. This is such an exciting endeavor to support the MG community and I am thrilled to find out more about it. With me. Today is Annalise Hammerlund. She’s an expressive arts therapist and mental health counselor from grand Rapids, Michigan. She works with individuals and groups to process experiences through creative avenues such as art, dance, music, drama, play and writing. Also with me is my friend Susan Woolner. We are friends in the Mayo Clinic Social Media Network and she is heading up this project. Susan, tell everybody a little bit about yourself.

Susan Woolner (02:13):

I’m a neuroscience patient-support communicator for a neuroscience center in Michigan. but I’ve been serving on neuromuscular communities for the last 30 years and one of the things I love most about it is one that the people, there are so much expressive and creative people as part of that community. And this time, especially because many of them, because there is an immunocompromised portion of some of the community, but there’s also risk of breathing issues or other physical issues if they were to contract something like COVID-19, that is going on now.

Susan Woolner (02:53):

So the community is isolated, maybe isolated, as much or more than other communities. So this gave us a time to think how can we support the community with something that shows them the value and the fantastic energy that’s part of this community at a time when we can’t gather together. And so that’s why we thought of My MG Sole Project. Annalise, an expressive arts therapist. How do you go about designing a project like this?

Annalise Hammerlund (03:20):

What we want to reflect on is things that are accessible that hopefully everyone I could have some access to because as we’re all stuck in our homes, we know that sometimes it’s not easy to get out and get materials. And then something that is interesting and fun to explore and shoes are just full of so many great potential metaphors and avenues of exploration and things to talk about. It’s an item that we’re all at least familiar with. So it felt like a great way to start exploring something creative together at a distance.

Janet Kennedy (03:58):

What do you plan to do with these creative shoes once they’ve been done?

Susan Woolner (04:02):

Annalise made a great point about the shoes being a great metaphor. So you know, when you wear a pair of shoes, they kind of form to your feet and so your shoes are, are expressive to you, not to anybody else. So if anybody else were to stick their feet inside your shoe, they would not feel comfortable, not as comfortable as their own shoes. In addition to that, we choose shoes based on kind of what they look like, fit, the purpose, you know, so a sports shoe versus a boot versus a cleat. So those are all different for everybody. It allows them to choose something that’s specific to them in choosing one of their own shoes or choosing a new shoe that they have a blank canvas.

Susan Woolner (04:44):

And they did, they’re going to create on a blank canvas. What we’re going to do after this is, during the month of May, we’re using the internet and social media as a place to gather all of these expressive shoes that everybody’s created. So we’ll be using a hashtags, #MyMGSole, and hashtag #MoretomethanMG and posting them to Instagram or Facebook and gathering those along with an artist statement that, that each person will produce with that. So they’ll actually say why they’re there. Empty Sole represents them. What did they paint that represents them as a person represents their story with MG. So the idea is the left hand shoe would be their, their life and their story before MG and the right hand shoe would be their life and their story after being diagnosed with MG. Some of the things that are important before we have a chronic illness become really less important afterwards.

Susan Woolner (05:47):

And sometimes our friends change. Sometimes the fact that we have a chronic illness then just becomes more isolating. and our friends who are supporting us change. Sometimes our family that is supporting us change. And so those are the types of things we, we hope people will document, but any, in any event, we’d like them to do a shoe, that represents them and their inspiration about their MG story and who they are, inspiration to themselves.

Janet Kennedy (06:13):

It’s interesting that a lot of folks that have any kind of neuromuscular or chronic illness don’t look, and so there’s a, the metaphor of walk a mile in my shoes really is resonant here because so often we don’t know what’s going on on the inside with people. We don’t know what they’re thinking and what they’re feeling. They look okay. So this is a way for them to show through their shoe art really what’s going on inside and how they’re feeling. And I love the idea that, that this is the metaphor that you’re using.

Susan Woolner (06:49):

One of the things we see with MG is, and people talk about specifically this is extreme fatigue. So the fatigue is not fatigue. We think of, Oh, I tired. It’s, I can’t raise my hands above my head to put a shirt on or I can’t raise my hands to button my shirt or push up my glasses or chewing and eating. I’m swallowing. And sometimes a problem. So you could become tired in eating just because chewing it takes so much energy. So those are all things that go along with MG. And while every person with MG, they call it the “snowflake illness,” might be affected differently. Just like snowflakes are all different. They might be affected differently. We want to know how they’re affected and also what supports them. So not just the aspect of the disease of what they’re suffering with or they’re, they’re affected by, but really how that’s changed their life and really what also are the things that are exciting for them now.

Susan Woolner (07:51):

What are the things that they wish they did? What are the things that they thought were hard before and they don’t even think about. Now. An example of that is, you know, if I, if I had to travel, you know, three hours in a car, but now I don’t have to travel cause I get to work from home. Well that could be an advantage. Like I think all of us are, are seeing that as somewhat of an advantage now and also somewhat of a, not advantage, but I also think that those are the things that we hope that people capture.

Janet Kennedy (08:17):

The interesting thing about this project is that it is a solo expression of well, how you’re feeling and who you are now and who you were before, but you’re sharing it via community. How does community play into art expressiveness, Annalise? What do you see, as how people share, the work that they’ve done?

Annalise Hammerlund (08:40):

I think that art expression has been a part of human community since human communities were formed. As we look back in all of the historical records, there’s always some sort of artistic expression happening in every community. And right now we don’t have the ability to be in community physically. Like, maybe we’re used to, but we are really blessed to have all of these technological avenues to connect with one another. They’re not a perfect substitute for that physical community, but it’s the best thing that we have right now. And so I think any way that we can find two connect with other people right now is important and something that we need to be focusing on.

Susan Woolner (09:26):

I think community because what I’ve seen is support groups where you get with other people and you can share what you’re experiencing and there’s always support as community. Community by its very nature is supportive of people who are going through similar things. This is a way where we’re using art to essentially show how big this community is and the MG community is thought of as a rare disease. So, a very small illness community. My hope is that we’ll see this as hundreds, maybe thousands of shoes and show the value and in the size of this community and that everybody will feel supported as part of it. Not just people with MG, but maybe caregivers who are caring for somebody with MG. All of that’s important.

Annalise Hammerlund (10:13):

I think the size of communities and given the size of our global community is always really shocking. I’m a little bit of a math nerd on the inside and I like to think about the phrase one in a million. And if you are one in a million on this planet, there are at least 7,000 people exactly like you if you’re one in a million. Seven thousand is a lot of people, but one in a million feels really small. So it’s about the perspective that you’re taking

Janet Kennedy (10:43):

and a part of community is the sharing. So if you are currently active in the MG community, but you know other folks who aren’t, this is a great opportunity to engage with them, share your stories via art and bring them all together. I think that’s a really neat way for people to show I’m not alone and here are other people that are in the community.

Susan Woolner (11:06):

Exactly right.

Janet Kennedy (11:07):

The project is going to be going on in May. How will they find it?

Susan Woolner (11:12):

Well, they can visit my MG Sole, and be able to actually visit the website that actually walks them through this. There’ll be downloadable tools that they can choose that they can practice sign. if they want to do that. In fact, if they don’t want to use their own shoes and there aren’t shoes that are blank as their blank canvas, they can simply download one of the paper tools and create their shoe on that and actually share that.

Susan Woolner (11:39):

It doesn’t have to be a physical shoe if that’s something that people are comfortable with or they just don’t have that ability to be able to download this paper template and then listen to these interviews and the prompts. you can still do that in your own way. Even if you, I don’t want to follow the prompts that we’ve set out, that’s okay too. Simply download the paper template and create whatever art you want. For example, we had somebody who put dinosaurs, they actually were working on the project with their son and so dinosaurs are important to him and this was something that they did together. So then that was a great creative way to do it. While it didn’t tell his specific MG story, it really told the story of who he is now in working with his son and his wife was helping in that project as well.

Janet Kennedy (12:27):

A little off topic, but this reminds me so much of the Flat Stanley project.

Susan Woolner (12:36):

Yeah, I’ve done that for other people’s kids as well as my own. You know, it’s the kind of natural resource, you know, renewable resource that that teachers use.

Janet Kennedy (12:48):

Well and the interesting thing about Flat Stanley is he travels around, he gets passed from place to place and we’re talking about shoes and movement. And I think as people are sharing information, I hope they’re also sharing where they live so that you can actually show the growth of this community.

Susan Woolner (13:05):

Yeah, there’ll be a gallery and maybe one of the aspect of the gallery is being able to kind of see a map where everybody’s sharing from. That’d be great.

Janet Kennedy (13:14):

Annalise, if you want to give guidance to people, let’s, let’s go back to the expressive arts therapist concept here. A lot of times people are like, I don’t know how to express being tired. I don’t know how to express being sad. It isn’t just paint the shoe black, obviously, there are a lot of ways to do it, but maybe can you give some ideas to folks about how they might visualize some of these emotions?

Annalise Hammerlund (13:39):

Absolutely. One of the things that I like to encourage people to do is to just take a moment [inaudible] try to sit with that feeling, maybe close their eyes, take some deep breaths, notice where they might feel a feeling in their body. A lot of phrases that we use in the English language already have a lot of visual imagery built into them for the way that we described emotions. So the feeling of butterflies in your stomach or the weight of the world on your shoulders or getting news hit you like a ton of bricks.

Annalise Hammerlund (14:16):

All of those things are already visual imagery. So maybe the way that you describe your tiredness already has some visual imagery built into it. so that’s one of the things that I encourage people to do. And then also to think about, maybe does it have any particular colors or maybe there’s a quality of line for tired, maybe it’s bumpy or jaggedy or just flat, totally flat. So those are some of the things that we want to think about. And remember, there’s no wrong answer. My tired is different than your tired. My happy is different than your happy. Maybe for me, happy as blue and maybe for you, tired is blue and that’s not wrong. That’s just you and me being different and having different feelings and experiences.

Janet Kennedy (15:10):

I love that concept that, that this is a total personal expression of what you’re thinking and feeling and whatever you do, what it means to you.

Annalise Hammerlund (15:22):

I think for a lot of adults, especially getting involved in a creative process can feel really uncomfortable. Maybe you haven’t touched a paintbrush since elementary school and that is totally okay. We are not out here to create masterpieces. We are out here to show something of our own experience. That’s okay. Be gentle with yourself and remember that this is more about the process than the product. And any mistake is just an opportunity to explore your problem solving skills and how you respond to things when they don’t go as planned, which is how things often go in the real world.

Janet Kennedy (16:06):

That makes perfect sense. So Annalise since you’ve now had to kind of work virtually, how has that changed how you do expressive arts therapy?

Annalise Hammerlund (16:15):

Well, I haven’t really done a lot of virtual IT, but I did my master’s program virtually [inaudible]. so we started exploring a lot of these concepts years ago, before this started happening. One of the things that you have to be more aware of is, especially if you’re doing a visual art visual arts project, is people’s access to materials. that’s really a huge thing, whether it’s visual arts or music, making sure that people have access to some sort of material and trying to think of different ways to have that. I did a little mini creative movement workshop a couple of weeks ago and I just went around my house and found all different sorts of props. Everything from my own silk scarves to pillow cases and tee shirts and even a piece of tissue paper and trying to help people. I see that there’s all sorts of things that you can play with and you don’t have to go to the store to get them. You just have to connect with that playful spirit in yourself.

Janet Kennedy (17:18):

You know, if anything that encourages the creative process. So while we can all be Fred Astaire and dance with a mop, or a hat rack, that was the best one. Was that. Yeah. but you know, it’s interesting when you think about, dancing with a stuffed animal or what a silk scarf does, totally changes. If you’re dancing with something that’s, you know, frim and round that you can’t drop.

Annalise Hammerlund (17:48):

Tissue is actually really fun. It does not get enough credit. If you just take a loose sheet of tissue paper, you can play that. Like, don’t let it touch the ground game that you would with a balloon and you can’t crush it. So, you know, it really takes, you have to be much more delicate. You can’t do what you would with a balloon.

Janet Kennedy (18:09):

That’s actually really great for kids learning control.

Annalise Hammerlund (18:13):

And while I was doing it, I had the thought quite, I do a lot of work within hospitals and it has to be latex free. So you can’t do any balloon game. But you kind of play with tissue paper cause that’s latex free.

Janet Kennedy (18:27):

You work with I imagine all ages.

Annalise Hammerlund (18:30):

Yes, I do. I prefer six and up just because early childhood takes a lot more specialized training that I don’t have.

Janet Kennedy (18:39):

And is this something that’s usually prescribed solo or is it while somebody is under care? So if you’re in a hospital, somebody is recovering from something and this is added to it, or do you actually have clients that this is really the only therapeutics they’re getting?

Annalise Hammerlund (18:59):

My individual work, because I am a licensed professional counselor, I’m able to bill through insurance that way. And so for those clients it really is the only mental health care that they’re getting. and then the clients that I work with in hospitals, it varies. There’s a group that I work with, not during the pandemic, but they are permanent residents of a unit where it’s assisted breathing so they’re all on ventilator units for various reasons. And we do a weekly one and a half hour group. It’s part of their socialization and just weekly routine. And then a lot of the groups that I’ve done with Susan are with people who are out in the community but have a particular neurological disorder. Parkinson’s, Alzheimer’s, epilepsy. We have a very large art space, epilepsy group in grand Rapids.

Janet Kennedy (20:06):

I don’t want to confuse using arts as physical therapy and arts as mental health therapy. But is there a crossover between the two?

Annalise Hammerlund (20:17):

Absolutely. My training is for the mental health aspects of it, but I’ve also worked with a lot of occupational therapists in the past who use very similar processes and techniques, especially with children to work on different physical skills. fine motor and gross motor skills. And that is something that I’m aware of and attend to in a lot of my groups, especially working with kids, one of the big things becomes crossing the midline of the body and that’s really great for brain development and getting both of the hemispheres to work at the same time.

Annalise Hammerlund (20:56):

So I try to design a lot of projects and activities that encourage that sort of motor activity.

Janet Kennedy (21:03):

You’re teaching me something here. So if I’m doing this and I’m waving in my right arm, the left side of my brain is busy. If I’m waving with my left arm, the right side of my brain is correct, but it’s actually a thing to make your hands cross over to the other sides, like touching your shoulders.

Annalise Hammerlund (21:21):

Yes. And so another one, I don’t know if you remember this from maybe like a gym class, but where you would stand with your feet wide apart and spread your arms out and then you would reach with your right hand to touch your left toe and your left hand to touch your right toe. So that’s a much bigger version of that. Sometimes I will have people put a drawing instrument in each hand and then we try to work on the page and draw with both hands, not making any particular shape or design, but just trying to keep both sides of the brain active.

Janet Kennedy (21:58):

That’s messing me up right now, trying to visualize that.

Annalise Hammerlund (22:03):

That activity actually has been shown to be very beneficial for people with trauma histories. Brain science isn’t entirely sure why, but it’s a thing that we found.

Janet Kennedy (22:13):

Fascinating. We’re going to point to everybody to MyMGSole.com for more information, for resources, for the downloadable paper template that you can use. If that’s what you want to design or if you want to practice on that first before you go to your actual shoe. And remember two important hashtags, My MG Sole, M Y M G, S, O, L, E and more to me than MG. So make sure whenever you post to Instagram or Facebook you are using those hashtags. Well ladies, thank you so much. I think this is going to be an incredible project. I’m really excited to have had just a small part of it. Is there anything you’d like to tell people before we wrap up?

Susan Woolner (22:58):

I’ll say there’s no right or wrong way to do this project. Just jump in and do it. I think that everybody has a creative part of them, but also everybody has a story of their life and this is just a small way of really being able to share on a canvas. The canvas might be different. It might be a paper tool or it might be a shoe, but essentially we’re creating a canvas of their life.

Annalise Hammerlund (23:23):

Yeah, and I’ll say to be gentle with yourself throughout the process as you’re doing these reflections, you may find that you start to really feel some of these heavy emotions over again and that’s okay. That’s what is expected. That’s part of this process and trying to find ways to give those emotions somewhere to live and that place to live is on this shoe and trust the process. Try not to be too critical of yourself. Try to get curious and be playful and overall, just be gentle.

Janet Kennedy (23:59):

I look forward to seeing some beautiful and crazy and expressive and fun shoes, coming up shortly on MyMGSole.com. Thank you so much for being here.

Announcer (24:12):

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