Shailynn Taylor - From Funeral Planning to Future Planning

Shailynn Taylor's journey with spinal muscular atrophy (SMA), a degenerative genetic disorder, is one of incredible resilience and hope. Diagnosed at 18 months old, she was told that her life expectancy was only twelve years. At the age of 22, she started experiencing rapid deterioration in her health and even planned her funeral. But just in time, a treatment for SMA was approved in the US, and Shailynn began advocating for access to this life-saving medication.

Shailynn's mental health journey, which includes battling depression and anxiety, has been just as challenging as her physical health. She emphasizes the importance of counseling, learning coping mechanisms, and finding a balance to navigate both SMA and mental health complexities. Through her advocacy work, Shailynn shines a light on the need for change in various areas, such as accessible housing and air travel. Despite everything, Shailynn refuses to let SMA define her, instead focusing on living a life full of joy, positivity, and possibility.

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You can find Shailynn on Instagram @shailynntaylor

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Rising Strong Links:

Instagram: @Risingstrong

FREE  ME TIME download mentioned in this episode: bit.ly/freemetime

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TRANSCRIPT:

Host/Lisa: Welcome back to another episode of rising strong mental health and resilience. I'm your host, Lisa Bain, and today I have an inspiring guest who shares her story of resilience in the face of a debilitating genetic disorder. She literally went from planning her funeral to planning her future. Now, let's get started.

Host/Lisa: Today I'm speaking with Shailen Taylor, who's a disability advocate and motivational speaker. She has shaped her perspective to value connection and authenticity above all. Welcome to the show, Shailen.

Shailynn: Thank you so much for having me. I'm so excited to be here with you today.

Host/Lisa: At age 18 months, you were diagnosed with SMA, a rare degenerative genetic disorder similar to ALS. Can you tell us more about this and how it shaped your future?

Shailynn: For sure? So at about a year old, my parents started to notice that I was having a bit of trouble. When I would walk, my ankles would curve in a little bit. But other than that, I was happy and healthy and meeting most of my milestones. My mom went to lots of different doctors, and they all said that it was fine, I would grow out of the way I was walking, and it would be fine. But after many opinions, at 18 months old, my parents got the diagnosis of spinal muscular atrophy, type two. They unknowingly were both carriers of the genetic disease. And by both being carriers, they had a one in four chance of having a child with SMA. And so my brother and I are 17 months apart. So before they had my diagnosis, my brother was born. And he was born with a heart defect that required open heart surgery and months and months in the ICU. And so he thankfully, is not affected by SMA, but also has his own medical battles. And so SMA is a genetic disease. It starts at birth, impacting the muscles, slowly deteriorating from the spine out. It leads to other complications with health, but ultimately takes away the ability to walk, to speak, breathe, eat, until it has deteriorated all the muscles in the body. So when I was diagnosed, they told my parents that my life expectancy was twelve years old, that there was no treatment, no cure, just to take me home and love me. But there was nothing that medicine could do to prolong my life in any way. And so I hit twelve and then hit 18. And it wasn't until I hit 22 that I finally started having health practitioners saying to me, your health is deteriorating at a rapid rate, and you need to be aware of what that looks like. Making end of life plans, I completely planned my funeral with my best friend at 20 years old, and then suddenly, there was a treatment approved in the US for my disease when there had never been something on the market. And so I began advocating for those treatments, and it would be a long fight of many years. But I eventually, in 2018, accessed treatment because of the help of my community, who fundraised hundreds of thousands of dollars in order for me to not only pay for four doses of treatment, but knowing that that would qualify me for a medical study in New York, for a clinical trial of a new treatment for my disease that was still at phase one study.

Host/Lisa: And you are currently enrolled in that study and taking part in treatment? Correct.

Shailynn: So I have completed that study since. After five years, I hit the end of the study. Unfortunately, about the last two years into treatment with that drug, I began seeing a decline in my strength and my energy again, and knew that likely the dose just wasn't high enough for adults as I was receiving the same dose as small children were getting. And it was an oral drug, and the drug that I had purchased was spinal injections of a drug called spinraza. It was the first drug ever to come out for SMA and has been around for almost 14 years now in the SMA community. But this is the first year that they're starting to study a new dose for adults and are really investing in the research and collecting the data of what this drug can do for adults and what possibly increasing the dose could do to benefit adults with SMA as well.

Host/Lisa: So how old were you when you started these treatments at an adult, and how old are you?

Shailynn: I started my first clinical trial was a two month study out of Alberta children's hospital, and it was an oral drug. They had never made it very far, but that was my first taste of wanting to see what research was like for my disease. And that was in 2016. I was 19 years old then. And so, yeah, I am now 28 years old and have been on treatment consistently since I was 23. And yeah, it's incredible to be 28 and as healthy as I am and able to still keep planning a future when for a long time in my life, that wasn't something I ever allowed myself to do. Right.

Host/Lisa: So you've gone from planning your funeral to planning your future. That's a huge turnaround. Can you tell us how all of this has affected your mental health?

Shailynn: Definitely. My mental health has been something I've battled with since I was in grade eight, is when I first started struggling with depression and anxiety. And it wasn't until I was 18 that I first was diagnosed with seasonal depression and anxiety. At the time and started my journey of mental health, medications and the battle of trying to be independent as a kid and wanting to push your limits and become your own person was definitely what first made me realize how different I was and how different my future would look. And that grief and jealousy for a long time was just too much, and I didn't have the tools to understand it or to cope with it. My mental health has been something that's come and gone repeatedly. I've recently been being looked at for bipolar, bipolar depression. And so just like medically, my mental health is complex, and then my life is complex on top of it. And so the combination has been much harder of a battle for me than living with SMA has been the battle with my mental health and trying.

Host/Lisa: To.

Shailynn: Find a balance and find the right medications, the right counseling, the right tools to be able to cope with my life and move forward in my life.

Host/Lisa: So that just segues perfectly into my next question, which is, what does coping look like for you? What are your tools? What are your skills? What have you learned over the years? What works for you?

Shailynn: So coping for me has definitely expanded a lot. For a long time, I coped by dissociating and learning to stay in my body and cope with the pain. I have a lot of chronic pain, so staying in my body, being able to cope with the pain I'm in, and there's the never ending medical battles. Learning to stop dissociate. Dissociating was huge for me. That was a lot of counseling. I have been going to a counselor for over 15 years now, and that's not like consistently every month, but through the hard times in my mental health journey, I lean back into counseling and being reminded of the tools that are there to cope. My medication, my sleep, being able to prioritize little things like that and realize that they also can have a big impact on my mental health, really has helped me feel a bit more in control of it. And just the more I learn about my mental health and the way I think and my patterns, the more I'm able to correct them and learn from them and be aware when I'm starting to fall back into patterns and be able to implement the different tools that are available at the time.

Host/Lisa: Would you say that your counselor has helped you discover different tools, or has that been something that's just been part of your life experience, just your own learning as you go along?

Shailynn: My counselors have definitely helped me discover new tools, but I think what I find most helpful with counseling is having someone who can challenge my thoughts and make me aware of the unhealthy patterns in my thoughts. And I think that those reminders I still need sometimes to be able to get out of the loops I'll get into. But I've been to over 20 counselors and I think that each one kind of leaves something different with me. And I've been able to come to terms with different things with each one. And I don't think that a person has ever done counseling. In a way, I think there will forever be ways we can learn to cope and to show up differently in the world.

Host/Lisa: Absolutely. And I think an important thing that you just brought up and I can definitely relate to, is we're in our own heads. Twenty four seven. And so even though when we say things out loud to our counselor and they call us out on our bs, right, but in our own heads, it's a dialogue that goes on all the time, so it becomes our normal. And I think you're absolutely right. Having somebody be able to call us out on that or just even question, maybe not call us out so blatantly, but even just take us down through some questions and have us examine our own thoughts by exploring different things so that we can realize the self chatter in our own heads that may not even be true.

Shailynn: Right, exactly.

Host/Lisa: So you do a lot of advocacy work, which I absolutely love. Can you tell us a bit more about what you're involved in?

Shailynn: Yeah. So my advocacy work was not something that I went into planning to do. It evolved from me advocating for treatment and realizing that really I was the only person advocating that every adult with SMA's life mattered and could be made better by a treatment that was sitting on a shelf. And the more I got into that world, the more I saw just how many areas need light shone on them and need consistent pressure and awareness in order for change to happen. So I work with advocacy for accessible housing, for accessible air travel, and then I work with newly diagnosed SMA families and helping them through their journey. I've worked with the Canadian Organization for Rare diseases, doing a lot of political advocacy with them and being right in Ottawa meeting with the people making the decisions for rare. Yeah, it has. It's ebbed and flowed and it's something that I have to be very aware while I'm doing because I burn myself out very easily. And so I have to remember that there will always be time for advocacy, and I can only do so much. But it's definitely once you have something that you're so passionate about and so passionate about changing, it just kind of becomes a part of your life, whether you want it or not. And just seeing the changes that have come from different projects I've advocated with is really like fuel to keep advocating, because changes do happen. When multiple voices and people come together, there's room for change. And believing that change is possible is key for me and my mental health to not just get down with the way things.

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Shailynn: I think a lot of hope for me has come since treatment. But more than treatment giving me hope, it's seeing little kids and how incredible they're doing on treatment and being able to say, like, wow, if they're able to do that on treatment right from birth, this treatment can do something for me. And believing that I don't need to change anything about the way I am, but hoping that my quality of life can improve. Those little bits of hope are what I cling to. And then, just like family and friends who have always believed so much is possible for me and the community who has come alongside me over the yeah, it's everyone, it's the people who believe in me that give me hope. And then the hope I have for the future of SMA. And SMA not being something that is terminal one day, well, and by being.

Host/Lisa: Part of clinical trials, you are creating that change. It may not happen today or tomorrow or next year, but you are a part of that journey of creating that change. Should be very proud of that. You have been quoted as saying that you will not let SMA define you. Can you speak a little bit more to that?

Shailynn: Yeah. I think as a teenager I was really scared that my life would only be about SMA and trying to stay healthy. And it is a full time job. SMA is like a huge part of my life. And the research, the conferences, the advocacy, all of it is SMA. But I refuse to let my life just be SMA. I never wanted all my hours to be spent trying to stay alive, because then what was I staying alive for? And so I've always wanted all these experiences. But never really thought I could wait for them in the future. And so instead, it just brought me to live really fast and do all the things I'd ever dreamed while my body was healthy enough. And in doing all of those things, I was able to find myself and realize that I am so much more than SMA. But because of SMA, there's some very special work that I get to do and some amazing people in my life that I would not know if it weren't for the disease. And so I have finally, as an adult, now come to realize that SMA does not define me. It's a huge part of my life. It's a huge part of who I am. But I am my own person with my own goals and just my own experiences I want to have and vision for my life.

Host/Lisa: It's interesting because I say the same words about my grief journey. Grief is embedded into every cell of my being. It will never be removed from me. I will carry it until the day I die. But I refuse to let it define me.

Shailynn: Definitely, no.

Host/Lisa: We are so much more than the challenges that we face. We can let them define us, definitely. We both know probably lots of people that allow that to happen. But when we make that decision not to let that happen, that's where the magic happens.

Shailynn: I think it really is. And still being able to give space for that grief and for how it shaped you, but then still choosing to live and to make the most out of life, it's such a duality. But I think it's something that by the end of our lives, almost every human will have experienced both sides of life.

Host/Lisa: Absolutely. I think the longer we're on this planet, the longer we're alive, the more adversity we face. Now, you may never experience another adversity such as sma. You might experience other, smaller adversities. I may experience nothing like losing my daughter ever again. Dear God, I hope not. But life is constantly throwing curveballs at us. It's unfortunately part of our learning process as human beings is what I've come to accept, I guess, on some level. But I think we do get stronger. I mean, I hated hearing that term, and I don't know how you feel about, you're so strong, right? You just kind of want to throat punch people sometimes. Nobody gave us a choice. Nobody gave you a choice or me a choice. But here we are. And it used to make me angry, but now I think, yeah, I am strong. And you, my dear, are definitely strong. And I think we get stronger by learning to carry our stuff longer and longer and longer. Right. And facing these other curveballs completely.

Shailynn: Yes. And we learn to carry it with the memory of the people who are not with us. And that makes it less of a lonely battle. Always when you can just step back and remember that, yeah, there are people right next to you that other people may not see, but they're there.

Host/Lisa: Absolutely. I couldn't agree more. Now, I've met you a handful of times and you're always chipper and happy and you're just like oozing with positivity. What's your secret?

Shailynn: I think my secret is that I know depression, I know sadness, I know grief, and I don't want other people to be feeling those ways. And so I choose to show up joyfully. I choose to be positive and find the positives. But there is no magic trick. It's being around other people who are positive, who choose to show up with joy also, because it's a choice. It's completely a choice to show up angry, bitter, miserable, or to show up with a smile on your face. And I think it's the simplest choice we can make, is to spread kindness to the people we encounter in our day, because we all have no clue what anyone's going through that we pass. And yeah, it's taking space for myself. It's coming to a place where I've learned what I need, what breaks I need to take in order to show up that way. And for me, recently, this last year has been super hard with. I ended up getting c diffs for months and then I was declining on treatment and I had to move home. I was living in Calgary on my own and I had to move back in with my parents at 28. And there was just like a lot of grief that I was experiencing and frustration. And I chose to step away from social media for almost a year. And it wasn't because I didn't feel comfortable sharing the space I was in. It was because I didn't feel I had any positive in me to also bring to people. And I feel that it's important that we talk about the heavy and the grief and those things, but that we also are able to show up with joy while talking about those heavy things. And yeah, it was a long time for me to be able to come to terms with the quick shift my life took and building back what I was dreaming about before it kind of tumbled down.

Host/Lisa: So do you think that we can fake it till we make it? Sometimes? Like, even if we're not feeling up to putting that smile on our face or being that person that brings joy. Do you think sometimes we just have to make ourselves do it to get to that point? Or do you think that's doing ourselves a disservice?

Shailynn: I think that at some point, we do have to make those tiny changes, because you can stay in that heavy, but nobody is going to bring you out of the heavy except yourself. And so it really is something that you have to force a bit at first, and then it becomes natural. It becomes natural to want to make people smile and to say something kind to them and to make people feel seen. But if you're not feeling seen, the forcing will just drain you.

Host/Lisa: Yeah, I think you're absolutely right. I think that there's two sides to that coin. And I agree with everything you said. I mean, there are days that I didn't feel like putting the happy face on, but I did it, and then it got easier. But I also got myself into a heap of mental health trouble by putting that mask on too much and not being honest with myself, even about what was going on inside. So I think it is a little bit of a balancing act, definitely. And there's no easy step by step process on how to work with that. I think we've all got to figure out what works for us. But on that topic, do you have any physical or mental rituals that you do for your physical and mental well being?

Shailynn: Yeah, when I'm at my healthiest, I'm going to the gym, I'm stretching. I'm leaving the house at least a few times a week. But it's a bit of a balance, as everything is for me, because I also can only do those rituals when my health has the capacity for them. So they've become things that I know are good for me and that I'm my happiest when I'm doing them. But I also have to be able to pause and know that I'll be able to get back to those rituals and those activities. But sometimes I need a break. So finding that balance is tricky for me. My one ritual that I started in high school, and I'm very privileged to be able to do this, but every winter I go somewhere hot for at least a week, because being in Saskatchewan, where it's freezing and so much snow, I'm pretty much trapped in my house so much. And I need to have that freedom back, to be able to drive my wheelchair down a sidewalk, to be able to go where I want on my own time, and also to have a break from the muscle pain that I get all winter from being so tense. And so that is my one ritual that I try my best to save for and stick to is to have that week of recharge in the season that I know is most challenging for me. And it really does help me to make it through the rest of the winter when I've had a bit of a break from feeling so isolated.

Host/Lisa: Absolutely. I think there's something powerful, too, in having something to look forward to. Right. Even though things are really awful, like, it could be 400 below or so, it seems, you know, that that trip is coming so good for you for making that a priority.

Shailynn: Yeah, it's been very good for me. And then just like I love to swim, I can move freely in the water. So just things like that in that week, I can really take care of myself and move my body. And, yeah, it's very healing. And something that I very much recommend when it's possible is just any kind of little break from everyday life to really recharge.

Host/Lisa: Absolutely. I agree. I know that our listeners are going to want to go online and check you out and maybe book you as a speaker. So where's the best place for them to go and do that?

Shailynn: The best place for them to reach me is on Instagram. I'll have the link to you for the episode. And, yeah, send me a message. I love being able to be out in the community. I work with everything from schools and kids to women's events, and it really does give me such a purpose to be able to go and spend time connecting with people in the community and being able to normalize disability a bit more.

Host/Lisa: And thank you for being so raw and vulnerable. And you've made me comfortable asking you some really hard questions. And I feel like I have learned a little bit more about what SMA is all about and the challenges that people like yourself face. So thank you so much for being my guest today on rising strong.

Shailynn: Thank you for giving me a space to share my story. I appreciate it very much so.

Host/Lisa: And to the listeners, stay well and be resilient and remember that you were made for more. Catch you next time.