What does it mean to truly embody strength? Meet Tanya, an extraordinary woman who is courageously navigating her life with multiple sclerosis and a brain tumor. She bravely shares her journey with us - from experiencing symptoms at a tender age of 15 to undergoing brain surgery in Ottawa Hospital in November 2021. This will be an eye-opening experience for listeners, shedding light on the realities of living with MS and the inspiring resilience of the human spirit.
Our conversation explores how Tanya's perspective on her son's mental health struggles was reshaped by her own illness. We also delve into the challenges of distinguishing symptoms caused by MS from those due to other factors.
Tanya's inspiring journey doesn't stop at her personal battle with MS. She has taken her experiences and used them to support others as the head of an MS support group. In this episode, you'll hear Tanya's insights on the power of community, the importance of reaching out for help, and her efforts in creating a WhatsApp support group for those living with MS in Canada. This narrative is not just about battling a disease, it's also about overcoming isolation, finding strength and meaning in adversity, and redefining resilience. So, tune in, be inspired, and learn from this tale of courage and persistence.
What does it mean to truly embody strength? Meet Tanya, an extraordinary woman who is courageously navigating her life with multiple sclerosis and a brain tumor. She bravely shares her journey with us - from experiencing symptoms at a tender age of 15 to undergoing brain surgery in Ottawa Hospital in November 2021. This will be an eye-opening experience for listeners, shedding light on the realities of living with MS and the inspiring resilience of the human spirit.
Our conversation explores how Tanya's perspective on her son's mental health struggles was reshaped by her own illness. We also delve into the challenges of distinguishing symptoms caused by MS from those due to other factors.
Tanya's inspiring journey doesn't stop at her personal battle with MS. She has taken her experiences and used them to support others as the head of an MS support group. In this episode, you'll hear Tanya's insights on the power of community, the importance of reaching out for help, and her efforts in creating a WhatsApp support group for those living with MS in Canada. This narrative is not just about battling a disease, it's also about overcoming isolation, finding strength and meaning in adversity, and redefining resilience. So, tune in, be inspired, and learn from this tale of courage and persistence.
Welcome to the Mentally Strong Podcast. I'm Colum Sutherland. Join me on my journey as I explore and discover all there is to know about living well with multiple sclerosis. I'm a normal guy who has recently diagnosed and started treatment. I will share with you my conversations with others who are living with this chronic condition and with professionals who provide resources and advice. My hope is that you gain inspiration and ideas to improve your life. Welcome back to the Mentally Strong Podcast. For today's episode. I had a lot of trouble coming up with an introduction worthy of my guest story. Today, Tanya will share her incredible story with you. She believes in thriving over surviving, and you will gain a new appreciation for how resilient human beings can be. Welcome to the podcast.
Speaker 2:Well, thank you, I'm honored to be on here.
Speaker 1:When I read your story and I was trying to come up with this fancy, nice intro, I'm like I don't have the words, so we'll just let you tell your story, and I think the listeners will get up by the time we're all said and done.
Speaker 2:So I'm sure they will.
Speaker 1:Yeah, I think so. So are you from Ottawa?
Speaker 2:No, I'm originally born and raised in Montreal. Okay.
Speaker 1:And what brought you to Ottawa.
Speaker 2:My husband for work.
Speaker 1:I guess I'll let you start the story where you want to start the story Sure.
Speaker 2:Sure, in the MS community I've sort of come up with a label Magically Special, because I also have a nickname that started with me since I was much younger Dream, so I call myself also that is so Magically Special unicorn and MS kind of goes together because I love unicorns and well, my story is quite long, but the sun, the story is. I know I've definitely had issues since the age of probably 15. And I'm currently 48 now and I remember at 26 feeling tired and hot flashes after a shower I had just had my daughter my daughter is my second child At 32,. I do remember also my hands seizing up and I was doing laundry and I couldn't let go the laundry basket and I had to pry my fingers off. I kind of pushed it the side because my son always had mental health issues, one of the other reasons we moved from Montreal to Ontario. So if we fast forward to 2019, when I was 44, I, you know, we had to admit our son into the hospital the first time and for suicidal tendencies, and I remember having such bad headaches I couldn't lift my head off the pillow. And I also remember occasionally having blurry vision and standing issues and getting tired fast and when I did go see anybody over the years, it was I was either told I was migraines, you have kids, you're female.
Speaker 2:So I had my first MRI in June of 2021. And I had that MRI because when I went to go see my eye doctor for an emergency visit because I was having trouble seeing out of my left eye, he thought it was allergy, so he told me, come back in a couple days. When I came back in a couple days, I can no longer see out of my left eye at all. So he immediately called the Eye Institute, with me sitting there with my husband, and they saw me within 24 hours. Within those 24 hours my son had a major psychosis and we had the police come several times. The last time we had them take him away.
Speaker 2:So this was like 3am in the morning. At 8am in the morning I had an appointment with the Eye Institute. Meanwhile I'm sitting with the eye specialist at the Eye Institute while my husband gets a call from upstairs at the hospital from the psychiatrist telling us what she's so far has talked to, tried to talk to my son and they're trying to regulate meds and at the same time the eye doctor is telling me has anybody ever spoken to you about a mess and I said no. But because I used to work in the trial in the hospital as a social worker, I had some clue that there was something wrong, from the age of definitely 3032.
Speaker 2:So we fast forward to my first MRI, my first MRI, which was at the Montfer hospital In the middle of the night. I get the MRI on a Friday and Sunday morning at 8am. I remember clearly my family doctor calling me and telling me by the way, substantially, we found a brain tumor and he's like nothing to worry about. You'll meet with the specialist for that, as well as the MS specialist, and we'll go from there.
Speaker 1:So how far or what was the time frame there from that first deployment to the phone call on the?
Speaker 2:Sunday morning. So when I first saw the eye doctor it was in May, and then it moved over a week or two and then 24 hours later I was seeing at the Institute and then, about a month and a half later, during lockdown of COVID, I had my first MRI and then in July I saw the neurosurgeon of the Ottawa hospital.
Speaker 1:So it was going to cost.
Speaker 2:The Civic Canvas, yeah, and then I saw, in August of 2021, I saw the MS specialist, the head of the MS clinic in Ottawa, dr Freeman, and all I remember is my husband saying, so, is it MS?
Speaker 2:And he just points at the brain tumor on the screen and says if I don't know what MS is, I shouldn't be doing this. So it is a rare form of MS and the type of brain tumor I had was called meninginoma and it was non-cancerous, but it was still tumor and in order for me to continue with him, we needed to get that out first and then we would talk more. So I kind of put off having the spinal tap. I did everything else but the spinal tap, because it's not that I was fearful, I just in my brain, I wanted to get the brain surgery done over it because I know it'd be six to eight hours and it was my first surgery I've ever had in my life. And so, yeah, I just decided to jump all the way. Callum, that's just the way I'm currently. So, november 3rd of 2021, I had brain surgery.
Speaker 1:I'm thinking back to where you said the spinal tap. I was petrified. I had my gun.
Speaker 2:I remember getting epidurals with my kids and I was like I don't really want to do this. I don't really want to do this and looking back now, I should have got it done before brain surgery, just because I had a lot less spinal fluid at that point after because you lose a lot when you have brain surgery.
Speaker 2:So but yeah, it's. I have to say the doctor that did mine and I can't remember his name on top of my head he was amazing and he really tried and I had to do it sitting up so he had several times and I don't want to scare anybody on here, but like he was really really good and really patient and I'm going to tell everybody, if you ever have to have one done, drink lots of water a day before, lots of water a day of, and then, after you're done, drink a small coffee. That's what I was told by all my nurse friends and they were like, just do it, and it worked.
Speaker 1:So yeah, mine went as well as it could have. Everything was smooth. I figured if I could do brain surgery and recover from that.
Speaker 2:I can do anything. I'm a superstar now.
Speaker 1:I'm a bad, that's fair.
Speaker 2:That's more than fair.
Speaker 1:That's fair. What a comparison.
Speaker 2:Yeah, yeah, yeah, for sure. Yeah, I mean, I have to say the brain tumor was. I know it was an accidental, fine, but that was scary. And it is also a rare form of a mess called tumor active and that's which can either be brain tumor or the different type of lesions. They're wider. I have regular lesions, so mine switches into relapsing, remitting now that I don't have the brain tumor.
Speaker 1:So the tumor was caused by MS.
Speaker 2:Yes, the tumor and MS are connected.
Speaker 1:I learned something today.
Speaker 2:Yeah, Cause that's why I said my neurologist, my MS neurologist. He pointed at my screen and said if this is not MS, I don't know what is His exact words, and he'll never forget me.
Speaker 1:You seem memorable just in the short time I've known you, so that doesn't surprise me.
Speaker 2:Thank you, yeah, I mean I have to say that I don't wanna scare anybody else out there that has a mass. It is very, very rare and it is very slow growing and typically the brain tumors that can grow would have been found in any MRI you've had. So it's not to worry that there's gonna be one growing there later on. It just I won the worst lottery ever, so yeah.
Speaker 2:And during all this time my son was also labeled Schizoaffective, which is Schizo-Frenia plus other stuff. He is now 24. Yeah, so I had an interesting time because when I was first being assessed and during the COVID lockdown, my mom, who lives in Montreal, also developed a really bad dementia. So, my luckily, my brother still lives there and my sister-in-law and a couple of months on the list, we finally got her into a subsidized home near my brothers and she's now in a home. But yeah, it's kind of like losing everything all at the same time. Yeah, but on the positive note, if they would not have, if they would not have been looking for a mess, they would have never found the brain tumor. I wouldn't be here talking to you today. So MS saved my life and not many of us can say that.
Speaker 1:That's a very positive way to see it, cause you said it wasn't cancerous. So is it because the tumor would have kept growing and eventually hit something, or what Well?
Speaker 2:the tumor at this point had pushed my whole right. It was on my right cerebone, it had pushed my whole right side of my brain into my frontal part of my head and it had nowhere else to go. So it was starting to grow down my spine. So you have a gland inside your head as well, one in your neck. The gland inside my head, a squish just called an empty cella, and I think it's starting to come back. So that controls your hormones, your weight, all that stuff right, especially in females. And I've just been kind of like on the it's having brain surgery and having a brain tumor and having a lot of lesions on my cerebellum. They did warn me that it would excel my MS for a couple of years.
Speaker 1:By getting rid of the tumor.
Speaker 2:By getting rid of the tumor. Yeah, but I had no choice but to get rid of the tumor, because I was even having trouble swallowing.
Speaker 1:Okay, how is the MS affecting you today?
Speaker 2:Well, I'm not the same person as I was before. It's a day by day event, just like everybody else within us. The only difference is is I have a lot of tightness and I have a lot of brain swelling still, and that's normal. It takes years for your brain normally to settle without any kind of chronic illness or anything. Having a MS because there's inflammatory, it just adds to more of my inflammation. So even communicating with you right now, I can feel it's not as bad as it used to be, but I can feel my brain tight inside my skull and it's a weirdest feeling. I know our brains do not have sensors, but you can feel it against the thing and it's just. It's odd to explain and it also affects the muscles in the back of my head, like I don't have any more feeling in the back of my head. Yeah, I have more on my right than my left.
Speaker 2:What else has happened with my MS? My walking is definitely different. I do use a cane now only because occasionally I get really, really bad vertigo, and it's not the regular kind of vertigo. There are two kinds of vertigo and it's the kind of vertigo that happens when you have a MS or a brain tumor on your cerebellum. Even if it's gone, it's still. The damage is still there. So until recently it was so bad that even looking at this computer screen, everything around would be just so spinning. I do have the legs that give out sometimes too, so it's just for my safety, like I wouldn't want to fall. So I got to try an alinker on the weekend and I'm definitely going to see about crowdfunding with them to see if I can get one.
Speaker 1:Do you know?
Speaker 2:what an alinker is. No, alinker is a type of bike that is not considered a mobile device yet in Canada, but they're working towards that and it's three wheels and you just use your legs and it's definitely. A lot of people have said that it's helped keep their mobility. So, instead of a walker or a walking walker and I did tell them I'd come on and talk about it, but yeah, I'm so honest, it's so bad, but they're not getting anything from it I mean I really want OHIP and anybody across Canada because it'll help people like us and other people with other chronic illnesses that affect their mobility. And we can talk more about an alinker later if you like. But yeah, it's really cute. It's like a three cycle, but you're not pedaling, you're using your feet.
Speaker 1:And you can sit.
Speaker 2:So you're not standing like a walker, you're always leaning over and a cane, you're always using the one arm to hold you or the arm touches You're sitting so you don't feel like I'm always feeling like I'm drunk on a boat 24-7. So for me, to give me that stability, to feel like I'm part of society a little more than I have been, Based on what I'm hearing, it's affecting your day to day non-stop.
Speaker 2:Non-stop, yeah, non-stop. I can't. At the moment, I can't really work either. I had to stop working in 2019 when our son got suicidal and I wasn't working for the government like most people in Ottawa or anything like that. I was actually selling hot dogs for a guy that fixed hot dogs in Ottawa. You were doing what Selling hot tubs?
Speaker 1:Okay, okay, yeah.
Speaker 2:Did I just blow your mind.
Speaker 1:No, I might edit this out, because I heard hot dogs. That's why I was like why did?
Speaker 2:It's okay, hot tubs.
Speaker 1:Hot tubs, hot tubs.
Speaker 2:You know, you can eat a hot dog in a hot tub. Yeah, Don't know where to go from here. On that one.
Speaker 1:Yeah, no, we're not, although you just did. Anyway. So it's actually a great segue, because as you're listening to this story and I'm having this thought you can hear lots of laughter. Would you say your positive nature. Is that something you grew up with or is that something that you've learned and adapted over the last few years because of your circumstance?
Speaker 2:I would say a combination of A and B. I've always been a very happy, smiley, giggly type of person and I think that having all this has made me see a different perspective on life for sure. I mean, I first started with having a sick child and then it moved on to being sick myself. So, and admitting of being sick is what took me over 25 years to do, considering the fact that I was told my brain tumor grew when I was between ages of 15 and 20. So definitely had symptoms a long time. And yes, the brain tumor is connected with the MS, it all the brain tumor, from what I'm understanding. So, yeah, I'm just a happy go lucky and it's. I think it's why I got the nickname dream years and years and years ago.
Speaker 1:Yeah, I don't know if you're going to be able to answer this. I'm just curious because I have a son and I know how important he is to me. What do you think? Him being ill, or you being ill, changed your perspective more.
Speaker 2:It definitely changed my perspective on his anxiety, his depression and sometimes his bipolar tendencies. Yeah, I definitely definitely feel differently than probably my daughter and my husband about that, which I think you know most of us with MS.
Speaker 1:I'll experience it. I'm not as far along as a lot of people who have MS and my symptoms are pretty mild. So far I have. If there's a good version, I have it. I Don't like saying it that way, but it's true. No, yeah, the most challenging part by far is it is the mental part of it, and I'm not being funny or cute. It is why I call the podcast mentally strong, because it is the part that I find the most challenging, for sure.
Speaker 2:It is.
Speaker 2:It takes double the amount of cognitive ability to do anything, it doesn't matter how smart you are the focusing, the communication, the eye contact, everything Regular, I call them normies take for granted and I don't mean any offense to anybody out there we are not normies, right, we are not the normal population.
Speaker 2:And it's so hard and I hear you because I also have that my brain slowly moving back while the stuffing they put inside my head slowly gets dissolved on my body Right and I'm slowly coming back to who made me Mentally who I was before. But then I have that cognitive death deficit on top of that. So often I I can't provide eye contact and provide you with who I am at the same time because my brain, just it can't do it because I will get the head pains or I will get the, the anxiety feeling or Any of those above. Right, and I'm sure that's you can understand, or just reading something and you're like you have to re-read the same thing 20 times, even though you're understanding it. It's like it's like you're reading it but your brain just goes away. It takes a trip down the the roller coaster and comes back around except it's not a fun roller coaster.
Speaker 2:No, it's not.
Speaker 1:It's the kind of you're not strapped in and there's no gravity, and I Also, in addition to that part of it, it's new to me is when I have a symptom of some sort, I'm like is it MS or is it just cuz I Did this or it's this?
Speaker 2:I'm just trying to pick and choose and I know I find that very difficult, extremely difficult and for me, like I have to always see my two things as as one right, because I'm always questioning which did it?
Speaker 2:You know, and my physiotherapist, which I have to say she is amazing, she's really new and she's a neural myofascial release physiotherapist and Sometimes I'm doubting things and I will show her where I'm having a pain, like, for example, last week I started getting pain under my rib and it started happening near the end of physio and she could she could touch it because she also does myofascial release. So she was checking it out and she's like that's specificity and I'm like I first I thought I turned the wrong way or I moved the wrong way or I did something, and then, low and behold, she answered my question. But she said to me don't doubt yourself, because you are a very confident person. You, you know inside your body Whether it's something you did or something else. Typically, you are the best person to ask about how you're doing and how your symptoms are so interesting I could spend some time thinking about that.
Speaker 1:I'll do that later.
Speaker 2:And you're welcome to message me. I am as my friend Terry, which I'm calling out right now, will say I am a bundle of answers.
Speaker 1:All right, everyone heard of its record. It's safe to do so. So you said you have a positive nature, and that's obvious. How do you keep positive? Because, even though we're hearing the giggles and everything else, there's going to be times when there are not giggles and they're probably loo-beling the guest. There's tears at times. So absolutely stay positive. Or how do you bring yourself back to the positive?
Speaker 2:Maybe it's about I let myself feel, if I need to feel that moment, I let myself feel a lesson in the middle of something, and it doesn't give me the opportunity to do that, and then I let it. You know, let it out, let it, let yourself feel. But then once I allow myself that, I only give myself so long to feel like that, after that I'm like that's it, it's time. I love music and I love singing and I used to play my guitar. I'm not, as I can't, my fingers are numb and I can't do it quite as well, but it's not taking me away from trying to dance and listen and try to sing. Um, and that is my, that's my outlet. And going for walks, which is why I also want that little bike, if I can go for walk, the little bike.
Speaker 2:And the other thing I do, and it's newer to me, and my friend Terry and I and another MS friend, we started playing on the PlayStation and we start playing video games at night and it's kind of hit, like he calls it his therapy, and I have to say I do appreciate him and I do appreciate him Appreciating me, you know as well, and it's almost like it's a brother I never had, do you know, I Love my brother but I'm not close to him the way I am with him and that's great and he gets along with my husband and we all play video games and that's another outlet and it does help because you, just, you know a lot of people aren't into that and I wasn't always into that, but you know, having some laughs and giggles it's something really silly, really really helps Not taking nothing so much to heart, because you, you start taking too much to heart and everything, everything becomes so difficult.
Speaker 2:Your life becomes such a challenge. So and I also believe in pink fluffy unicorns dancing on rainbows how am I putting you through the rigor anti?
Speaker 1:It's all good. You drink from that pink, fluffy unicorn bottle that you're drinking from, so it's totally okay.
Speaker 2:And it's just water.
Speaker 1:I find it important to ask that question and hear that, because we all need our outlets and I I would imagine there's someone out there that's looking for an outlet and maybe you just gave them a new idea. So I have my outlets, and it's going to be different for everyone, but we need that outlet because, you're right, it is heavy and it can't. If you're, if you're gonna be all in that and sit in that heaviness all the time, it's not going to be very fun.
Speaker 2:So I no, I rather not be ER and. Er I mean as much as he's cute and adorable. I do not want to be ER Unicorns to.
Speaker 1:ER.
Speaker 2:Don't forget the rainbows.
Speaker 1:For everyone listening. She did warn me before we started. So what do you do to take control or to gain back a sense of control, when everyone knows this is largely uncontrollable?
Speaker 2:Well, I find putting out positives and for me putting out positives is helping others similar like me or anybody who, especially running the MS groups for MS Canada, I mean, I really enjoy having somebody else smile and laugh with me and realize that yes, it's heavy, but it doesn't have to be heavy all the time and sorry what was your question?
Speaker 1:We'll come back to that. I want you to, if you don't mind, sharing a little bit more about the MS support group that you're involved in.
Speaker 2:Yes, I run the MS Canada, which is used to be called formerly known as MS Society of Canada, the Ottawa chapter, and I'm currently very much enjoying that and hoping to grow our group and hoping occasionally maybe to meet up with another group. And because, you know, I do agree with a lot of my people who I've gotten close to with MS and we are a family and we are a family not chosen by by blood, by by illness, and we need to all support each other in some format. That's truly what I believe and for me, putting those positives out there, it makes me feel fulfilled and I believe that positives come back to me.
Speaker 1:You know If someone's listening who has MS and is considering or was looking for something like that and they're not sure why they would do it, what would you say to them?
Speaker 2:I would say go to MS Canada, go to the website, contact the navigator and see what they have. If you are in the Ottawa area, I mean they will let me know and if there's anything else you're looking for, they're there to help us. And you know, I run the group every third Thursday of the month, except for the summer. I only took it over last October, so I am still new at this and but yeah, like there's tons, so much support out there. You know, please get some support, even if you feel you don't want to. It just sometimes it just it helps to talk to somebody else who shares, even though it's such a snowflake disease they were all so different. It just helps to listen and share and sometimes just listening, just being there with amongst people, and you're like, oh yeah, you know like, and I truly believe in. You know no advice, obviously, but I do believe in telling services. To me, services is a different form of, it's not really advice, it's helping others, you know, reach another potential that they may be feeling they're falling through.
Speaker 1:I think it's amazing that you're giving back this soon after everything you've been through. I think that speaks to you volumes about you as a person, so it really hats off to you.
Speaker 1:Thank you, that's really amazing, that means a lot and as I'm sitting here listening to you, I'm like, well, this just happened to her and she's going and you've taken that turn and you're doing that already. It speaks volumes of you. So you run into someone tomorrow and it comes up and they go. I've just been diagnosed with multiple spherosis. What would you say to them?
Speaker 2:I give them two choices. I was like I'm like, are you, do you feel you would like some support? If you do, you can go to the website of MS Canada and talk to a navigator, or I can give you my email address and you're more than welcome to email me. And none of the above. I mean it's in their hands and they don't have to contact me. They're more than welcome to contact MS Canada.
Speaker 2:But my advice is you know, get supports. You know, connect with people as soon as possible, because it's so easy to go down this hole, this it's a dark hole and having my son who has Schizoaffective, which is Schizoaffrania, he's refused years and years and years of not having peer support and it's still a challenge. So he doesn't see the value in it. And I have to say I've always seen the value. Like I said, I was a social worker in Montreal and I was a social service worker and that is different and you know grassroots stuff and even then I believed you know connecting people because that's how our world should be. We are still animals, even though we're humans, but we still. We need that social connection and it's hard to be social connected to people who aren't normal, like who are, who are normies, who aren't experiencing what we're experiencing, even if it's lighter, even if it's heavier.
Speaker 2:I mean, my MS friends range from, you know, very, very mobile and hiking to a quadriplegic Right. So, like you know, it's really important Check in on each other. You know, like I even started a WhatsApp group for anybody in Canada or anybody that has MS I'm hoping for just do Canada but and anybody in there. You know, we can just chat and support each other and he doesn't have to be on Zoom, it doesn't have to be in person, it just just somewhere to say hey, you know, I did this today. This is how I'm feeling, and everybody can just send some hugs, you know, and just feeling like you're not alone, not isolated, because it's a very isolating disease.
Speaker 1:It certainly can be on the bad days, that's for sure, yeah.
Speaker 2:Any last thoughts? Not that I can think of Nope. Besides, get out there, you know, like you don't even have to leave your room. Don't isolate yourself, because I know how easy that is to do.
Speaker 1:Yeah, when you feel like you're alone, and the longer you stay there, the harder it is to go, and you just got to take the step. I think it's Bernie Brown that has the five second rule. Like you think, if you want to do something, do it within five seconds to make sure you do it. Otherwise you're going to find a way to talk yourself out of it, because human beings are really good at it.
Speaker 2:We are, we are for sure and I have to say I really enjoyed getting to meet you and I really enjoyed chatting and I really appreciate being on here.
Speaker 1:Oh, it's my pleasure. I think it's very brave of you to come out and share your story. The fact that you've started helping with the resource center as well in this short period of time is a I can't think of a better word than amazing and your positive spirit. I said at the start, you give resilience a whole new meaning. You really do it's. If I had to try to come up with an intro, I still couldn't do it, but I'd love to have any more, and thank you so much.
Speaker 2:Thank you.