Navigating Multiple Sclerosis (MS) as a Mother and Entrepreneur

Today's guest is Michele Mateus, who is an entrepreneur and a mother. She founded Mateus Studios, an award-winning portrait studio based in Vancouver, which seeks to help women feel alive and free through a radical celebration of self, especially in  boudoir photography and editorial inspired portraits that have a chic artistic vibe. In this episode, she shares her experience of being diagnosed with Multiple Sclerosis, or MS, and the path she has chosen to create greater wellness in her life even with this chronic auto-immune condition. She brings her expansive sense of purpose and possibility to this conversation.

She shares these resources:

National Multiple Sclerosis Society: https://www.nationalmssociety.org/

MS Canada: https://mscanada.ca/

Vancouver MS Clinic: https://www.ms.ubc.ca/

Dr. Gabor Maté: https://drgabormate.com/

Contact Femammal:

• Email femammalpodcast@gmail.com
• Follow the podcast on Facebook at Femammal Podcast

If you have feedback or want to be a future guest, please get in touch!

Logo design: copyright Darragh Hannan

Transcript

[00:18] Greer: 
Hi, this is Greer, your host for Femammal, the podcast that holds space for women to explore what it means to live well in our bodies and celebrates moving through this world as female mammals.

[00:36] Greer: 
Today's guest is Michele Mateus, who is an entrepreneur and a mother. She founded Mateus Studios, an award-winning portrait studio based in Vancouver, which seeks to help women feel alive and free through a radical celebration of self, particularly using boudois photography and editorial inspired portraits that have a chic artistic vibe. In this episode, she shares her experience of being diagnosed with multiple sclerosis, or MS, and the path she has chosen to create greater wellness in her life. Even with this chronic auto-immune condition, she brings her expansive sense of purpose and possibility to this conversation.

[01:30] Greer: 
Welcome, Michele. Thanks for being a guest on the podcast today. And you offered to share a little bit about your experience with multiple sclerosis. So hard to say--multiple sclerosis.

[01:43] Michele: 
That's it. I know, that's why I just say MS. Keep it simple.

[01:46] Greer: 
I will be saying MS for the rest of the conversation, and I'm wondering if you could start by sharing a little bit about what your path to getting diagnosed with MS was.

[01:57] Michele: 
Sure. It's actually quite a funny story. So I'm in Vancouver, Canada, and I have a dear friend who lives in San Francisco, and at the time of figuring this all out, I was in San Francisco at Love Fest, or Love Parade it was called. It's like a big huge event that takes over the whole city. It's just so fun. Everybody gets dressed up and I was actually wearing this PVC corset and it was really hot, and I just kept thinking that it was too tight, like the corset was too tight. Now, I don't usually wear PVC corsets out in public all around the city and things like that, but it was just so fun to do, so why not? I got into it and so I kept loosening it up and then I kept sitting, going in the shade, being like, I don't know, whoa, this is so weird. And my friends were kind of teasing me that I was a lightweight. We weren't even drinking or doing anything, so I think this is eleven in the morning or something, and it was kind of a festival that went on all weekend in San Francisco. This was in 2008. Anyway, we did go out later on that night and yeah, I still started feeling like everything was very foggy and hazy in my vision and yeah, then I decided I'd call my doctor while I was there to make an appointment for when I got back. Now, I had had laser eye surgery about almost two years before this, so I honestly thought my laser eye surgery had gone bad or something. Like, why would my vision all of a sudden be all hazy? And I'm no longer wearing said corset? So obviously it wasn't that I just couldn't piece it together because I was typically quite healthy. And anyway, so I went and saw my doctor, and he was like, okay, so I think you should go see somebody, an eye specialist. So I did, and the eye specialist was like, something else is going on here. He sent me to another eye specialist, but streamedlined me to get in right away. And she was the one that was like, I suspect that you may have multiple sclerosis. And I was like, what is that? I actually had no idea even what it was. Actually what she suspected what I had was called optic neuritis, which is a common marker for women when they first get diagnosed with multiple sclerosis. So she explained all of that. And so most women get diagnosed with multiple sclerosis around the age of 30, which is what I was. And often this optic neuritis thing happens where it's like you're going blind. You're not blind. It's just that the nerves aren't firing. Anyway, that's what happened to me. Then I got fast tracked, meaning two months wait, to the MS clinic, who then ran some more tests and then confirmed that, yes, you can join the MS club, as I call it. And then that's pretty much how that happened. So, yeah, my friends to this day, we laugh. And also sometimes she would feel bad about that story. I'm like, It's not your fault, because it was just so, like, I got there, everything was fine. So, yeah, we always joke it all started with a PVC corset.

[05:13] Greer: 
Yeah, that was an unexpected element in your story. Thanks for sharing. This might be a good time to share with listeners a little bit more about what MS is and what that experience could look like over the course of a life.

[05:27] Michele: 
Yeah, sure. So multiple sclerosis, or MS, as I just call it, it's an autoimmune illness, but it's also a neurological illness. So it's quite complex, and it can present itself very differently in all different bodies, which is what makes it really hard to treat because it's so diverse in its nature. So it affects your brain and your spinal cord, and you get these little lesions on your brain. And when I got diagnosed with Ms, I actually only had six lesions, and by the criteria, you need eight. But apparently, because of where my lesions were, sometimes that can be just as important, if not more important than the amount of lesions, if that makes sense. So currently now I have lesions on my brain and in my spinal cord, which I didn't originally have, but basically, I'm not very sciency, so I'll do my best to try and explain it. There's damage that happens in your myelin sheath, and it's like those synapses that are firing, they're not firing all that well. They're misfiring. And your immune system often thinks it's under attack, and so it's overcompensating for that. It's really complicated. And so you can get, like, weakness, you can get chronic fatigue to the next level. A lot of people, and including myself, I was in a wheelchair once because I developed lesions in my spine. Now, your spinal cord, that's the area that kind of controls the lower half of your body. So when I got lesions in my spine, all of a sudden I had, like, crazy pain. But anyway, yes, eight lesions is one of their markers, so I had six, and now I actually don't know how many I have because I have had some disappear, and I've had some come back. I always feel like it's one for one. Like, my neurologist will say, like, oh, yay, no new lesions. Actually, some have disappeared, and then maybe the next year there'll be, like, one new one or something. For me, I haven't gotten that many more other than the ones that developed in my spine, but the spinal ones are the ones that can impact your functioning in your legs, arms, is it called? No, it's not executive functioning. Oh, my gosh, I'm so not sciency. But that is what ended up having that sense of paralysis for me that I experienced in 2011. And since then, I haven't really had any big relapses. I think. Yeah, the hardest thing with MS is that you get these things called flare ups. And so a flare up, typically, from how my doctor explains it anyway, is that if it doesn't last more than 72 hours, then there's no need to go running to the doctor, and it's not something so alarming. So you do get those kind of things, or I do, anyway. And again, it's so inconsistent that sometimes you're like, is this my MS? Am I just tired? It's so hard to identify what might be happening in your body. For me, I think I've always just tried to acknowledge that this is something I have, but it doesn't really run my life.

[08:57] Greer: 
That's a great perspective. Can you share with us what that paralysis flare up was like in 2011?

[09:04] Michele: 
Yeah, for sure. I was fine with my MS over, especially at the beginning, I think, because I was still kind of learning how to navigate it. I did have a lot more fatigue and pain and neurological pain. So, you know when your foot falls asleep and it feels numb, that's often what my feet feel like all the time, even still now. And so at that time, that's kind of what happened. I was like, my feet are really tingly, and my husband and I were out on a Friday night listening to some live music, and I was really struggling to stand up. I was like, oh, my gosh, I'm really tired. And again, because I got diagnosed in 2008, now this is 2011, so I was still kind of trying to navigate, like, is this my MS kicking in? Like, what's going on? Right? I don't know. I didn't really know again, because my first real thing was that optic neuritis, which is a whole different part of the body. So we're at this show and I sat down because it's kind of like a standing type of area, but there's little seats. I sat down. Then on the Saturday morning, I was just in bed, slow and all of that kind of thing. My husband used to travel for work, and by the Sunday night, I was not moving very well at all. And he had to travel on Monday and was like, I won't go, I won't go. I'm like, no, I'm sure I'll be fine and I can always call in sick to work. Well, by Monday morning, he left. He went to the airport, and I could not move out of my bed at all. I couldn't move. So I called a friend and was like, I can't move. She's like, what do you mean you can't move? I was like, I actually cannot move. I don't feel my legs. I don't feel anything. I don't know what's happening. And of course I started crying. So she came rushing over and then they called an ambulance and got me to the hospital, and I was in the emergency room. It was so funny, actually. I know that Americans love that we have free health care, and we do, and I'm very grateful for that, but it's sometimes very slow because it's free. And so when I got there, they looked at who my doctor was and was like, oh, we're going to fast track you because who your doctor is, and we know that this is probably very important, but I was still there for six and a half hours waiting in the emergency room and finally got put somewhere. And then after a while, I didn't really know what was going on. It wasn't until probably about a day or two into my hospital visit that they told me, like, okay, because they had to run an MRI and other things to kind of see what's going on. And that's when they figured out that I had these lesions in my spinal cord which were now impeding my ability to walk. So I wasn't obviously paralyzed. It was just like the attack on my body was making a sense of paralysis, so from my breasts down and also I was in extreme pain and lots of sensitivity to touch. So, like fabric sheets on my body, that kind of thing was very difficult. So at that time, they give you like a steroid treatment in the hospital and to help with some of the pain. But, yeah, I was in a wheelchair for quite a while, and then that was the year I was to get married as well. My husband was like, let's not have a wedding, and I'm not a wedding person. For the record, I would have been happy to elope, but I was so adamant that I wasn't going to let this illness get in the way of my life that I was like, no, we're still going to get married. It's like, I don't know. I don't think you should. And I was like, no, this is happening. So then the year before, there was a doctor in Italy who had come out with this treatment for his wife with MS. And a lot of places in the world were now offering this treatment, except for Canada, because who knows? It's angioplasty. So if you have a heart condition, you can go in anywhere in Canada and have that, and still yet in Canada, they do not accept this treatment for MS. So I went to the States and had it, and we did a fundraiser because I didn't want to cancel my wedding. And we raised enough money for me to go because, as you know, health care in the States is not that cheap. And it was so cool because our medical places are not as fancy as yours. This place is like a spa. I remember walking, and I was like, wow, this is so fancy. But I went there and I had this treatment, which is called CCSVI, and the buzz is kind of toned down a little bit, but it's not a cure for MS. I always look at it as a bit of jumper cables. What was really interesting is that the treatment center there just so happened to be a hotel nearby there, and it was like 90% Canadians staying in that hotel that were coming for the treatment. So it was there, India and Mexico that were offering this treatment, and Canadians were just flocking for it. And I went for this thing called CCSVI, which stands for Chronic Cerebral Spinal Venous Insufficiency, which is a narrowing in your veins in your neck. So often they will do this treatment for people who have heart conditions and open up the veins so that the blood can flow better, to avoid having blood clots and things like that in your brain. But because this study was done in Italy originally by a doctor who his wife had MS, and she was on all these treatments and drugs, and she was still in a wheelchair. And he's like, something's, something's got to be going on here. So he started to study it himself. He is not a neurologist, but he started to kind of poke around and try and figure out what's going on here. And so he did it for her. He did this research, and then she ended up doing this in Italy, and it had huge impact on her. And so I remember the day the story came out on Canadian television, on the news, when everybody was watching TV before the life of Netflix and things like that, and it was like the world had stopped for everyone in you know, the MS community, it was like, what? And of course, that wasn't happening here. Now, just to be very clear, it's not a cure it's a treatment, right? So the goal or the hope was that if you had this surgery, that it would support your MS trajectory, whatever that looked like for you, because, again, it's so different for everyone. So I went and had it in the States. I think the whole trip was something like $14,000 or something like that, to get the treatment. 

Greer: 
Wow. 

Michele: 
Which basically they go in through your leg. It's really cool, actually, because you're not really fully under, and they put a little thing in your thigh and then they do their magic and it's like they put a balloon in your veins, in your neck, and you feel the pressure because you're not fully under. It's the weirdest thing. Anyway, before they do that, though, they do something called an MRV, which is like an MRI, but the MRI studies your brain and the MRV is looking at your veins. And so then they show you a video to show that, yeah, you do have blockages in your veins, and some people just have more narrow veins as well, which I tend to be one of them. And so you could see that it was really cool. I still have the CD that they gave me. I don't know what I'll play it on, but I have it somewhere here where you could see the blood flow to my brain was not, it was very slow and I had the pinching in my veins, in my neck. So anyway, so they open those up and I guess the goal is that you'll have better blood flow to your brain and then you're not going to get these clots and the lesions won't start to develop and all of that kind of stuff. Again, it's a treatment. I know people that went three times for this treatment, hoping that it would help. It's still very controversial, but at the time I was like, I'll try anything because I don't take medication for my MS. That was a choice of mine. I am not against medication, for the record. But when I got diagnosed with MS, and it's so funny, my boss that I had at the time, because I had a day job then, was like, oh, you're going to be the poster child for the MS Society before you know it, because I'm such an advocate type of person. And it's true. I started going to any workshop I could find. I started going to any conference I could find. And what I found so fascinating was I was meeting all these people, lovely, lovely people, who had MS and were on however many things, to manage it, and yet were still in wheelchairs. And something just did not click for me. And I love my GP, and my GP was, that's my doctor, general practitioner. And he was like, yeah, it's hard because they just don't know what's going to work. And I support you if you don't want to do anything. And I had a neurologist who I did not like at the beginning, and luckily, I have a great GP. So I went back to my GP and was like, I need to find another neurologist. Like, I'm firing him. He's not allowed to be in charge of my health care. So here in Canada, it's covered, right, to go to the neurologist. But I think what people don't realize is you don't have to stick with the first one you get. And for me, I was like because he was really trying to encourage me to take these medications that I still was not convinced on. I was like, Is that a cure? No? Okay. No, thank you. And he would say really awful things to me. In fact, he even said to me, if you don't take this, you may end up in a wheelchair one day. And I was like, I'm willing to take that risk. And yes, I did end up in a wheelchair. And I did not feel bad about myself because I didn't take the medication. I was just like, okay, well, I know that this is a relapse, and hopefully it won't last long. But I then found another neurologist. Actually, it was during that relapse I got her because it was in the hospital that there was a visiting neurologist from Toronto. And so I was seen by her. And it was at that time that I told her I did not want to. I was like, can you be my neurologist? And she was like, Well, I'm not from here. And then there was a new one who had just started at the MS clinic here in Vancouver, and there's a huge MS research clinic in Vancouver, so I'm lucky to live in the city where they're doing that kind of research. But I still didn't want to feel bullied into having to take medication. I just wasn't. No, so I haven't ever taken medication for my MS other than the times I've been in the hospital. And again, I always think of those as jumper cables to kind of get me back to baseline. This treatment was not really all that invasive, and I do think it helped me.

[20:16] Greer: 
Yeah, and I think you said for some people, they experience it kind of as a miracle treatment where they have massive improvement kind of overnight. For you, what was that experience more like for me?

[20:30] Michele: 
Well, I think I go into everything very level headed and maybe even with a dash of skepticism, so not in a negative way, like, oh, this isn't going to work. No, I'm actually a chronic optimist. But I don't know, for me, it was like and I met another woman there, Sandra. She was so lovely. She was from Quebec, and we really bonded, and we were both kind of like, yeah, let's see how this is. I think it was like three days after they had a rental car. So we went to Hollywood, which was kind of fun. We drove there and both of us had our walkers, and we're going slow, and we're both like, how are you? And we just weren't sure. We were like, okay, because we did meet some people that were like, Hallelujah, I can do this again. And we were like, wow, that's kind of cool. But for me, I feel like it was just slow, and I was just really conscientious of letting everything, I don't know, process in my body. So I wasn't even really looking for that result. I feel like sometimes when you really are so desperate and you're looking for the result, I don't know, I think there's something happening in there, too, mentally, where I was just, like, taking it really easy because I came home, I still had lots of rehab to do. I still have all kinds of stuff. But I will say I did walk down the aisle at my wedding, which was a month after that treatment, so that was a big success in that sense. I mean, I was needing to use my walker the next day, that's for sure, because I was so tired from the wedding. But, yeah, like I said, I don't know, for me, it felt like it was like jumper cables.

[22:04] Greer: 
Yeah, that's really great perspective. It sounds very grounded for an optimist.

[22:09] Michele: 
Yeah, I think that's how I always try and approach things. There was so much uncertainty because I have friends that went and did that treatment, and they got super depressed because not a lot happened. But it also has to do with where are you in your illness path. Again, I only had those at that time, probably about seven lesions, and now the two in my spinal cord. But there's so many variables that it's so hard to know what would come out of a treatment like that, because it's just a treatment. I don't know if you injure a muscle, even you can go for a massage. But you might also need chiro. Right. You might also need physio. So it's just part of the puzzle.

[22:58] Greer: 
I think one of the real burdens of MS is that very often women get that diagnosis at this special time of life where you've maybe grown a lot as an adult. You've got confidence and skills, maybe, that you didn't have in your 20s, but then also you've got a lot of life in front of you, and you described this happening shortly before you were to get married. So what was the emotional impact of receiving a diagnosis like this that's chronic, that we don't have a cure for at that time in your life?

[23:31] Michele: 
Wow. Well, my mom had died a year before, and before that I was actually married and I lived in the UK. And that's where my partner was from. And my mom was sick, and so I came home from Canada. He did not come with me, and that all fell apart and that was sad. We were young, so you know what? There's nothing bad that really happened there. It was just got married quick and young and again, an elopement type of thing because I'm not really a big wedding person, which is ironic because I was a wedding photographer later on in life for five years. But I feel like when I got that diagnosis, honestly, because at that time, yeah, my life was just turned upside down, that it was like, add it to the list because I didn't really know what multiple sclerosis was. And I will say, even the day I got my diagnosis, the woman that was at the MS clinic here in Vancouver, who at the time was the head of that clinic, it's kind of a big deal. She was awful. She invited me in a room to go over all the exams and was like, okay, so, yeah, you got these six lesions, and usually we look for eight. I think it's called the McDonald's criteria. In this criteria, and we usually go for this many, but because of where you are, where yours are, we're going to go ahead and say that you have MS. And I just started crying. And she was like, oh, sorry, I don't have any tissue. And I don't have a lot of family. So I was there by myself. She's like, do you have anyone to drive you home? It all happened within, like, I don't know, eight minutes of going in her room and kind of being like, okay, bye. And I came out, and I was bawling, and my friend was there, and she was like, what is going on? Let's just get out of here. It was so weird and so impersonal and awful, and because I didn't really know what the illness was, again, and because my life was already kind of in shambles, if you will, or on the repair from that, like, I was grieving my loss of my mother and the loss of my partner and all of that. Yeah, very much. Once I sat with it, I was just like, okay, well, add it to the list. Like, what do we do now?

[25:45] Greer: 
Wow. Yeah, it's really hard that our healthcare systems don't build in space to really absorb the information of a major diagnosis like that. It makes it really hard to process, and then you have to go do all that processing on your own, and you might have a lot of questions later, and it's not a good emotional setup.

[26:05] Michele: 
No. Well, what they did do, we're like, okay, so the MS Society, which is closely linked with the MS Clinic, and you have the MS Society in the States, too, they do these workshops, and we recommend that you go, and there's this two day one that's kind of like an introduction to living with MS. So they did call me, and I did go to that, and it was there, actually, that I was like, wait a minute, this just doesn't feel right. And I actually made a friend that day because I put my hand up and was like, sorry, we've been talking here for two days, and all we've talked really about so they talked about "treatment." I'm doing air quotes now, you can't see me. But, like, "treatment" plans. And the whole treatment plan was all about pharmaceuticals. And I had already started doing a little bit of my own reading and research, and I was like, sorry, are we talking about anything else? Like in a holistic approach to how we can manage our symptoms? I don't know. I've been reading about yoga. So I asked this in that space and there must have been about, I don't know, 40 people there. And they were like, that's a great question. That stuff's all anecdotal all we know is about these drugs. And I was like, yeah, but those drugs are not 100% either. So anyway, I was pissed off about that. Welcome to the MS club. All we're going to talk about here is pharmaceuticals. And when I look back on that too, even the food that they were serving was like, not healthy food. It's so fascinating how healthcare works that way. It's like, let's just keep you in this bubble of codependence on pharmaceuticals and our support, which isn't that great, and not empower you to figure out what you can do in your life to support yourself now that you have this illness. And yes, I'm not saying that just some snake oil and yoga is going to help it, but for me, that didn't sit right. So that's when I went back to my doctor and was like, I got to get rid of that doctor. So I actually fired my neurologist twice. Because first I had that woman who didn't even give me tissues and give me a diagnosis within eight minutes, sent me off my way. Then I got the next person who actually took over for her, who is now the program head there and did not like him. He was such a drug pusher. And I'm like, I'm out of here. And then finally I got someone who really respected me and was like, yes, I'm going to let you know every time I see you if there's any new advancements in these treatments, aka drugs. But if you don't want to take them, that's cool. That's cool. We'll just keep managing together and we'll keep touching base. So that's kind of the path I've been on with that. But yeah, I don't know. For me, I think because I had so much going on in my life, I didn't have the time to wallow in this news because I didn't really know what it meant. So that's kind of what started my journey of getting really involved, which is typical for me, like researching, getting involved, seeing turning over stones to kind of figure out, what does this mean for me, versus just going to a doctor and allowing them to tell me what it should mean for me and taking their advice as a gospel truth.

[29:13] Greer: 
Yeah, I really appreciate the way you framed all this. I wonder if you could say another word about why you felt like drugs weren't the answer for you. And then also, it sounds like you've been very empowered around other holistic ways to improve your quality of life, and if you want to share any of those interventions that have improved things for you. 

[29:34] Michele: 
Yeah, sure. So, I mean, with the drugs, again, it's not that I'm anti-medication. I'm not. I think medication definitely has its place, but I think I've always been skeptical of medication. I think I always, look, my mom died of breast cancer, and she suffered with depression. And when she kept going to her doctor in fact, she came to visit me in England, and she was really not well. She came with her best friend, and her friend had told me she had been really sick, and she was always sickly. In fact, she was sick when she was born as a baby, and her sisters will always talk about that. But when she was struggling with her depression and going to the doctor and being like, I think something else is going on wrong here. All they did was tweak her depression medication. And because she herself was a long term care worker, she got pricked with a needle working with one of the seniors in the homes that she worked in, and she had to go to emergency, and it was just like protocol. They do this thing if you get pricked with the needle, right, because there's bodily fluids, blah, blah, blah. Anyway, it was there that they figured out that she had cancer because she had to do these other scans and the doctor there was like, oh, something else is going on here. And I think that was also something that really made me distrust just taking medication, because all along, all they were looking at her as is this woman with depression and changing her depression medication versus listening to her. I feel like women are not taken seriously in many aspects of our lives, but in healthcare. And it's just like, well, let's just tweak her depression medication. She's like, well, no, my body hurts and these things hurts and my breast hurts. Well, all along she was dying of breast cancer because when she finally got diagnosed, it was too far gone. She got diagnosed and died within nine months. Yeah. And it just made me really distrust, like, okay, you're just going to give me this thing. And again, I'm not even against medication for depression. I get that people need to take those things. But for me, I was like, no, I'm going to lift over every stone I possibly can. And unless it's really the cure and like I said, I was also going to these workshops and because not far after I got diagnosed, that's when this whole CCSVI thing blew up. So there was a lot more people in the MS community also questioning, like, what are these things we've been taking? And I know there's been advancements in the drugs since I've been diagnosed, and I think there's more available, but I just feel that so often we're not treating the whole person. And actually in this last year, I've been listening a lot to Gabor Mate. I don't know if you know who he is, but he's actually Canadian. Well, he's not Canadian, but he lives here in the lower mainland and he talks a lot about mental health. And he even actually was talking about MS recently, and it blew my mind because he was like, when people are getting diagnosed with MS, he talks a lot about MS, he's like, nobody has asked them their history as a human. And he's like, there's no surprise that more women have multiple sclerosis than men, and it is a neurological thing, because more women have experienced more trauma, and he closely relates. And so as he's talking about it, I'm like, yeah, it's right. Nobody in my MS trajectory has ever asked me about my family history of trauma. And I actually have a trauma riddled childhood. So that's not a conversation for today. But when I even learned that recently, I was like, oh my gosh, okay. Yeah, we are a whole system. And because I saw how my mom was treated by the health care system, I just wasn't convinced that I'm going to. And also the side effects of these drugs for me, just seemed worse than what I was experiencing living with MS. So it was like I just wasn't convinced. So at that time, I was single and I started doing yoga. I started going like four times a week. And I'm not talking Western hot yoga for exercise. I think yoga has been so colonized. And anyway, I got really lucky to find a really nice, calm yoga studio that practiced Yin yoga and very calming, and I was going there four times a week. And I think that just helped me through the diagnosis in and of itself. And often I would find myself on the yoga mat crying because of just that release. And just the way I ate, and I am vegetarian, so just like, being really careful with what I put in my body and trying to manage my stress and trying to look out for my symptoms but not be hung up on them. Does that make sense?

[34:13] Greer: 
Yeah, it really does. I really appreciate you sharing that sort of big picture, whole person thinking, because the reality is the medical system really isn't looking at us from that perspective. So you're the only person looking at yourself from that perspective. It sounds like you've really advocated for yourself and empowered yourself and used it to your advantage.

[34:36] Michele: 
Yeah, 100%. I'm also lucky because my MS isn't that aggressive. It's had times where it's been really annoying and it gets in my way, so that's also part of it because it's different trajectory for everybody. And even if it was more aggressive, I think I'd still be very curious about, especially now that I am understanding the links between trauma and things like MS, curious about how I would treat it. I'm not against medication. If it got really bad, I'd definitely entertain it, but I'd be very scrupulous about what I did.

[35:20] Greer: 
Yeah, it sounds like you really know your values, your boundaries, your priorities, and you're making choices from that standpoint.

[35:27] Michele: 
Yeah, 100%.

[35:29] Greer: 
You're also an entrepreneur and you're also a mother. Do you want to share a little bit about how your diagnosis has impacted those aspects of your life?

[35:39] Michele: 
Yeah, sure. I used to work, I had a day job. And anyway, I became a mom. And actually, after my son was born, I had a lot of problems with my MS, a lot. Like, there were days I couldn't even hold my own baby. I was really dizzy. I was super weak. And of course, I had a baby that was, my son used to wake up 10-15 times a night. It was insane. And actually, right now, he's nine. And we're just kind of exploring things like, is there an autism thing going on there? Because there's lots of things with him. I'm going and revisiting this a lot with all the people we're talking to about his past, and he was such an unsettled baby, so it was hard for me. And my husband travels for work, so I pretty much was like a single parent, and my MS was really flaring up. So my neurologist, who the one I actually love, she was like, I don't think you should go back to work unless you can work from home. Anyway, long story short, my work was awful and did not allow me to work from home, which is funny because I already had accommodation before going on mat-leave to allow myself to work from home. And so I even got a lawyer because it's actually against the human rights code here in Canada to deny someone with a disability, because MS is actually a disability, to not allow them to have accommodations. And so the lawyer was like, do you actually want to work for these people anyway? Like, if we won this? And I was like, you're right. No, I don't. Why do I want to win this? Until we just walked away from it and I quit that job. And I had already always done photography. I actually started photography when my mom died as a hobby. I've always been seen as a major extroverted person, actually in my 30s, especially in my late 40s now, like, really recognizing I'm actually an introvert who can be social, but I like to be by myself. I'm a lone wolf. And so I took up photography because it just allowed me to be by myself, wander around with my camera. I did street photography. I used to travel a lot, so that was just something I loved doing. I had a blog and then I just started taking it more seriously. Maybe this could be a business. So when my son was a year old, that's when I started my business. And when he was, I guess, a year and a half, that's when I started my Master's. So, yeah, you can tell I like to go for things that I want and then I quit my Master's. So I was like, I don't actually need this. I'm going to just continue on with this business. So part of it was just wanting to have more autonomy and freedom as a mom. And then part of it was just like, what else can I do? I don't want to have an office job and leave my baby. Which I was doing because I did actually, in the interim, have an office job for a short while, but I just hated yeah. So I just started this business and at the time my husband was like, what are you going to do? How are you going to carry all that camera equipment? What about your like, he is kind of a worry wart. And I was like, I'll figure it out. I'll hire an assistant. I'll get one of those Costco wagons and pull my stuff around in it. I wasn't worried about that because for me, I was more looking at the long term and the big picture of having that freedom that you can have as an entrepreneur. And now I will say that I work harder than I've ever worked in my entire life as an entrepreneur, and probably more hours because they're all cut up here and there. Because I work around my son's schedule, he's now nine. But yeah, I've had that business now eight and a half years and I wouldn't change it for the world.

[39:15] Greer: 
That's incredible. That's really incredible. A question that I often ask people is what impact their diagnosis has had on their sense of self and their dreams for the future. I'm hearing a huge expansiveness from you.

[39:35] Michele: 
Yeah, I mean, I never actually thought of that, but yeah, you're right, because I guess I was always like, you know that saying, don't let the bastards get you down? And I think for me, because I'm a very resilient person and I did experience a lot of trauma, childhood trauma. I think that's just always been my path of like, no, I'm not going to let that get in my way. I'm going to plow through this and yeah, so you're right. That's so funny because that was my word for this year and it's funny that you were bringing that up. I don't have resolutions, but I like to just have a word like that. I'm like okay, this is going to be my tone, my guiding principle for the year, and that is my word this year. So that's really funny that you just said that. 

[40:15] Greer: 
Amazing. I think you're really living it.

[40:16] Michele: 
Yeah, I try. Oh, wow.

[40:20] Greer: 
Do you have a sense of how you felt about your body before your diagnosis and then how you feel about your body now that you've lived into your diagnosis for so many years?

[40:31] Michele: 
Well, it's interesting because I feel like when I look back on, especially when I was in university, things that were happening within my body, I just thought it was because I was a burnt out university student, right, working two jobs, going to school. My parents did not have the funds to support me to pay to go to university. So I paid every single penny for myself, which meant I was also working hard, which meant I also kind of went to university longer than probably the average person because I just need to extend that stay so I could pay for it. But yeah, there were times that there were weird things that were happening, in my bias and I just thought was like, that, I thought it was like working too much, being too busy. And when I look back on that now, I can't help but think, well, when did my MS actually come into the play of my body? So there's curiosity there. My relationship with my body was always just disembodied. Like, I don't really think I had a relationship with my body. Becoming someone living with this illness forces you in many ways to become more embodied. Now, it's not even something I even knew the language to call it that. But as you're moving along because you're becoming more in tune, you're looking for things. Not in the sense of looking for things because you were looking for answers, but for me, it's just like being more mindful of my body. And as I said earlier, it's like, is that my MS or am I just tired? Or is it because I have a baby that wakes up 15 times a night? Which is it? You're trying to always tease that out. So, yeah, I think my relationship with my body became much more self aware and in tune to really kind of listen. And as I get older, I just keep more fine tuning that. Currently, right now, I'm in a program to become an Embodiment Coach. And the reason why I wanted to do that was to add that as a service with the work that I do here as a photographer, because I see so many people that are not really connected within their bodies, we're also in our heads, right? And I think that having an illness like this really kind of, for me anyway, nudged me along to that path of becoming more embodied.

[42:50] Greer: 
I think you're going to have so much to bring to your clients. And I really appreciate everything you've shared. It just sounds amazing. I'm wondering what you celebrate about where you're at now through all of this. 

[43:04] Michele: 
You know, I went to Italy in May for a workshop, photography workshop. And there was a moment where I was walking through the streets of Italy and I just gave gratitude to my legs. I mean, even my husband and I, we actually got engaged in Japan, and I had lived in Japan in part of my life, and my husband always gets sick and tired of me talking about how it's my favorite place on Earth. So he decided to propose there to one-up my love for Japan. And even then I remember saying to him, like, gosh, I'm so grateful that I can come on this trip. So I feel like where I'm at with my body, and my MS, and my life now is that I do often find myself just pausing and being like, thank you. Thank you, body, for allowing me to have this experience. Thank you for allowing me to do the work that I do and connecting others to their body. So I do express a lot of gratitude for that. And it's more spontaneous. It's not like a special practice I have. And I sit down and I rub my legs and thank them. No, I often become washed with this overwhelm of like, oh, my gosh, I'm actually moving. This is amazing. And I'm going to stop and give gratitude for that.

[44:20] Greer: 
That's really beautiful. Well, I feel like your gratitude is contagious. I'm really feeling it, I hope our listeners feel it too. Last question that I ask everyone on the podcast, what advice do you have for learning to listen well to our bodies?

[44:37] Michele: 
Well, I think that I'm still a work in progress on that, honestly. And I know this is not rocket science advice. I'm sure people have heard this a million times, but being in the pause, taking more time to just be slow. So, like, when I first got that MS diagnosis, I was going to MS or sorry, yoga four times a week. Then I got busy and I had a child and life got crazy, and I don't do that anymore. I don't really have that yoga practice like I was able to do when I was single. No kids. Things change. And I think that's another thing, is that we're so hard on ourselves to I sometimes think, like, self care, self love, all those terms can also make us feel like we're not achieving something. So that's why I always like to talk about self compassion and just being in that pause and giving yourself, even if it's five minutes. I have the five minute journal. I don't know if you've ever heard about it, but there's a paper version and an electronic one, like an app, and I use that and it's just five minutes. It's amazing. So it just takes that five minutes to be in that pause. I try and just have my morning coffee now that it's summer, because it rains a lot where I live. Sitting outside with a coffee and just taking that five minutes and taking a few breaths, I think everything always feels overwhelming, right? Like, oh, I don't have time for a whole yoga class and I got to drive there and I got to drive home or even at home. It's like if we can just be in our bodies for five minutes a day, and then maybe that adds up to ten, or maybe we do it once a week longer or whatever and just sit and have that gratitude for, I don't know, like our hands or our feet or our eyes, like all the body parts. I think that's what starts to really help you become more connected to your body and listening because we're just so go go. And also, I don't want people to feel like it has to be such a big thing to become connected to your body. It can be small things.

[46:42] Greer: 
That's such a marvelous and gentle way to put it. So thank you so much for sharing that insight with us and thanks for being present with us today. I've just loved this conversation so much and I wish you well.

[46:55] Michele: 
Thank you so much for having me. And it's so lovely to be able to talk about these, actually, you know, it's so funny, I always end up talking about entrepreneurship, so it was really kind of cool to reflect on the MS journey because I even sometimes forget about it because I'm just going through the motions. So, yeah, thank you for that opportunity to even reflect on that and bringing up that it's been expansive for me is just I'm going to sit with that later on today.

[47:22] Greer: 
Oh, that's good to hear.

[47:30] Greer: 
If today's episode resonated with you, I'd love to hear from you. You can email me at femammalpodcast@gmail.com. That's femammalpodcast@gmail.com. You can also follow this podcast on Facebook. Just search for Femammal podcast and you will find a community of people who are interested in living well in our bodies. And of course, I'd love for you to rate this podcast and leave a review wherever you download your podcasts. Until next time, be well.