The episode is about my 2 strokes and my journey with MoyaMoya syndrome.
SPEAK Season 1 Episode 3: Puff of Smoke
Speak Episode 3: Puff of Smoke Featuring Jessie Huggett
Rachel [00:00:00] Hi, I’m Rachel Grey,.
Debbie [00:00:01] And I’m Debbie Radcliffe, and welcome to our podcast Speak.
Rachel [00:00:08] Yes, a podcast from Being Studio. Being Studio is a community of artists with developmental disabilities. In this podcast, we’ll bring you the stories and voices behind the artwork at me. And today, we’re bringing you stories from Jessie Huggett. How would you describe Jessie Debbie?
Debbie [00:00:31] Jessie is very bubbly. She’s happy all the time. She’s amazing. She is stronger than I am. In many ways. I really respect her. I love her work, she’s strong. And I care about her a lot. She’s a fighter. I find her very strong that way. She’s a fighter, and I think her fight looks like joy. Like enthusiasm and energy, she’s very bubbly that way. She’s very enthusiastic about things.
Rachel [00:01:32] One thing about Jesse is if she’s watching a movie or if she’s talking about something that’s exciting to her, like she just like emotes it, you know, she she votes that experience. It’s like it’s happening to her in real time. Like the level of excitement that she brings to her relationships and her projects is really, truly stunning.
Debbie [00:01:57] Yeah, she’s like a sister from a different twister. I love her that way. She’s fun. She’s really fun.
Rachel [00:02:07] And before we really get started, I just want to say that I have a different kind of relationship with this story than with any of the other stories we’ve told so far. Jesse and I have been friends for almost 20 years, so I’m in this story deep, really deep. So now I’ll pass it over to Jesse, my incredible friend.
Jessie [00:02:33] Hi, my name is Jesse Huggett, I have chocolate straight brown hair and blue eyes, looks like the young and I have Down syndrome and that’s the story of my journey with moyamoya. I had a stroke. Brain surgery and a stroke in a story you’ll hear from my dad.
Jessie’s Dad [00:02:56] It would take me a million adjectives to describe Jesse. Not all of which go under the same category.
Jessie [00:03:05] My mom,.
Jessie’s Mom [00:03:08] There’s so many things about the reality of it that I don’t remember, but I remember the internal parts.
Jessie [00:03:16] And my surrogate sis, aka, my friend Rachel,.
Rachel [00:03:19] Hey, it’s me again. You already know what I sound like.
Jessie [00:03:23] And her mom,Kathy.
Rachel’s Mom Kathy [00:03:25] Actually, can’t remember my actual first impression because I don’t even remember when the first time I met you would have been because you just seem like you’ve always been a part of our family.
Rachel [00:03:37] OK, Jess. Are you ready?
Jessie [00:03:38] I was born ready.
Jessie [00:03:46] I think I can speaking, Live at theBoston’s children’s hospital ready to get me a surgery. And I just wanted to let you guys know that I love you and thank you for your patience and your positive five. So I just thank you. And I can’t wait to get to the other side so that I can live my future.
Jessie [00:04:13] Part one. My Dad. OK, so, Dad, why didn’t the doctors tell you at a hospital in Bedford?
Jessie’s Dad [00:04:26] Well, Jess, I remember being in a very small room and your mom and I kind of pacing about nervously and there was a change in shifts. And suddenly it’s like we blinked and there was this guy sitting in this chair looking up at us. And he was very honest with us. And he says, you said Jesse has suffered a series of strokes, brought it on by an extremely rare condition called moyamoya. He proceeded to describe what it was, which was that your carotid arteries were deteriorating, providing less blood flow to your brain. And just before we could kind of fully panic, we got lucky. I guess the guy then said now there’s an operation that she can get to fix all this.
Jessie [00:05:11] What was the plan?
Jessie’s Dad [00:05:14] Well, the plan was to get your help as soon as possible, but this was a condition we didn’t know much about. So immediately we burst into a million questions asking anybody we could about what resources were available. They kind of told us the kind of surgery that was required.
Jessie’s Dad [00:05:31] And then right away, we started beating the Bushes to try to find the right doctor to operate on you. So we talked to eventually was doctors in Ottawa, doctors in Toronto and doctors in Boston. Dr. Smith in Boston, who ultimately performed the operation, was very, very nice. We called them on spec from Biddeford. And as luck would have it in Boston, which is not far away from Biddeford, Maine there was North America is really the world’s leading moyamoya expert. And he picked up the phone. He was eminently available and he told us all kinds of information. No question was, you know, too stupid. He came up with intelligent, detailed stuff for us, educated us about the whole thing, and was looking for no reward at that point. He was just saying it because he was a very conscientious guy who was worried about us and was trying to help us as a family as much as he could. So there was kind of no question in the back of our mind that this was the guy to go to.
Jessie [00:06:33] OK, so. A question is for you and mom about Boston.
Jessie’s Dad [00:06:45] OK.
Jessie [00:06:47] So what was I like in a hospital in Boston right after my stroke?
Jessie’s Dad [00:06:56] Wow. Well, you know, going into it Jess, you are extraordinarily brave. And there wasn’t a moment of my life around that time that I was not inspired by your bravery. It was just it was stunning, very admirable. You know, this operation was a success and that was the good news. You know, based on that information. I went back to where we were staying not far from the hospital in Boston. And I was so exhausted I didn’t even bother checking my messages, which was a really big mistake. And I got up in the middle of the night and I went, oh, man, my messages. I didn’t check what a jerk. And I check my messages. And I saw that there was one from your mom saying, yikes, come back. Jesse has had a post-op stroke and as soon as I read that I bolted out of bed. I don’t know what time in the morning it was, but I remember running through the snowy streets of Boston all the way to the hospital, which was about six or eight blocks away in the snow, crying my eyes out, beating myself up for the fact that I wasn’t there when it happened, that I was so exhausted. I went to bed without even thinking about looking at my messages. And when I got there, oh, my God, yes, I was absolutely apoplectic.
Jessie’s Dad [00:08:09] And there you are in, you know, kind of a comatic state. And as you can appreciate, it was very, very dramatic. We spent a lot of time there. Very, very small, dark room with you, you know, more or less comatose, holding your little hand. We had some gentle piano music that you really like playing. And I remember that music listening to that music over and over and over and over and over again.
Jessie’s Dad [00:08:36] And I remember a moment where you came out of your coma and you sat up and you looked at me and you said, you know something, Dad? And I said, What Jess? And you said, you’re the love of my life.
Jessie’s Dad [00:08:49] And then you close your eyes and you went back into a sleepy state. Well, the emotional impact of that on me was incredible.
Jessie’s Dad [00:08:58] I excuse myself from the room. I went down the hall to a bathroom, which was the nearest private space I could find. I close the door and I cried like I have never cried before in my life. I fell to the ground in a fetal ball and I bawled my eyes out. And I remember hearing in the hall two doctors in this Boston Children’s Hospital. And you have to appreciate that this is a place that has seen it all. And these doctors are guys who have seen apoplectic parents a billion times on all kinds of scales. They started to have a conversation halfway through the conversation. One of them stopped, turned to the other guy and said, wow, do you think I cry in that bathroom? Never heard crying like that in my life. And then we were in a position to bring you home. We brought you all the way back to Ottawa and you were virtually kind of not there. You couldn’t get out of a chair. You couldn’t properly go to the bathroom. You had problems swallowing, eating, almost no memory recall.
Jessie [00:10:04] OK, another question for your dad is what were some of the ways that you helped me heal?
Jessie’s Dad [00:10:15] We were constantly trying to stimulate you to get out of chairs, move about all kinds of games. We played with you that were memory test games. Then there were things like trying to regain lost motor skills. You might remember just us playing with a balloon a lot, you remember that?
Jessie [00:10:32] I remember that.
Jessie’s Dad [00:10:33] You thought it was just playing, but it was actually therapy in disguise.
Jessie [00:10:37] OK, so and the other question is, how would you compare the old me to a new me?
Jessie’s Dad [00:10:47] Wow, Jess, you are like a million miles away from where you were five years ago. Like I said, you came home and you kind of weren’t there and now you’re pretty much you again, which is, you know, it’s a miracle. It’s a testament to a lot of people who love you, who put in a lot of time with you and in a lot of different ways. But it’s also a testament, you know, to you and this spirit you have that absolutely nothing can quash.
Jessie [00:11:19] And Rachel, would you like to add on to that?
Rachel [00:11:24] So the other thing I wanted to ask you is just you talking about how brave Jessie was leading up to her operation. And I was wondering if you could just describe that bravery.
Jessie’s Dad [00:11:39] Well, as you can appreciate, it’s a very difficult thing to have to tell your child that they need a brain operation, be a difficult thing to tell anybody. And we were surprised by the fact that she was I’m certainly not going to say nonplussed by it, but that she appreciated the situation she was in. And with a tremendous amount of bravery and commitment, she almost never second-guessed it. Now, you know, had it been me and I’m a bit of a neurotic character, I admit, I think I would have worried about a single solitary second until it was performed, but just lived her life, barely gave it a second thought. And I remember thinking, wow, there’s just a lot to learn from that. There’s a tremendous amount to learn from that kind of commitment and that lack of personal worry.
Rachel [00:12:34] And actually, I just have one more question that I thought of now, which, like, I think of Jesse as a really incredibly strong person, just very, very powerful person, very strong person. And I’m curious from your perspective, what do you think gives Jesse her strength?
Jessie’s Dad [00:12:57] I think part of it is just innate. I think she was just born with that quality – luck of the draw. And I think part of it is conditioned. I think part of it is from her mom and her mom’s side of the family comes from a long line of very, very strong, enterprising, constructive take no prisoners, women and also some creativity from that side that I think from my side, a lot of creativity and a lot of plainness, or I think playfulness, I should say, and I think those two things kind of come together and create this very dynamic, vibrant personality, which is Jesse.
Jessie [00:13:36] Part two, Kathy. OK, so Kathy. What was it like? For a year when I was in the hospital.
Rachel’s Mom Kathy [00:13:50] Well, it’s a bit complicated to answer that question, because you’re in the hospital a couple of times, so the first time when we came to Maine after you had your first stroke, it was really scary because we didn’t know what was going on. Why did you have that stroke? So that was really scary. And I think it was really scary for everybody.
Rachel’s Mom Kathy [00:14:13] But we had kind of a party happening in your home, in your hospital room because you’re actually feeling pretty good. I know, but we didn’t really know what was going to happen. That’s good. And it was a different situation when you went to Boston, right. For your surgery? Because I was that was a big roller coaster because a lot of good things happened, but some pretty bad things happened. So that was it was hard that’s a hard question to answer. Well, after your first stroke, when the one that happened in Maine, you had pretty much you were your typical self, as I recall, except you had a really hard time swallowing. And you remember we were trying to be really creative in food options for you because you only eat thickened liquids.
Rachel’s Mom Kathy [00:15:11] And chewed up food. So remember my star accomplishment.
Jessie [00:15:19] I remember.
Rachel’s Mom Kathy [00:15:20] What do you think my star accomplishment and my food category was?
Jessie [00:15:26] Pureed pizza.
Rachel’s Mom Kathy [00:15:28] That’s right. I’m so proud of that.
Rachel [00:15:30] That sounds so disgusting when you say it like that.
Rachel’s Mom Kathy [00:15:34] But if you look at the pictures, it looked like pizza.
Rachel [00:15:37] I remember seeing it, it looked good. And Jesse, was it good?
Rachel’s Mom Kathy [00:15:41] It was so amazing and it was really delicious.
Rachel’s Mom Kathy [00:15:47] And then when you after your second stroke in Boston, you had some different issues because you, again, had some trouble swallowing. But we were old hands at that. And we’re like, yeah, we got this. We know how to to to come up with good things for you to eat. But you had a lot of trouble with your speech. You had a lot of trouble finding words and expressing yourself. So that was really frustrating. And I remember for you, but you also had a lot of difficulties initiating movements, like I remember doing song and dance routines for like half an hour to get you to, like, get off of the bed or out of the chair or and then once you got up was fine. But you had the stroke caused you to have trouble initiating movement. So your mom and I lost all inhibitions. We would sing and dance in front of anybody.
Rachel [00:16:43] Mom, I was wondering, can you describe what it means to struggle to initiate motion?
Rachel’s Mom Kathy [00:16:53] Well, the. Sort of a basic explanation is you want to get up or you want to lift your hand or you want to raise your leg in your mind, you know, you want to do that. But because of the connexions in your brain, your body just has a really hard time making that connexion fire and getting that to work. So different tricks can work for different people. And maybe it’s because you’re a dancer, Jess, and you love music. I don’t know if that for you somehow singing and dancing helped. I don’t know why I had never seen that work with anyone else, but it worked with you.
Rachel [00:17:39] Also, you got my mom to sing and dance. So thanks for that.
Jessie [00:17:45] No problem.
Rachel’s Mom Kathy [00:17:47] It doesn’t happen very often.
Rachel [00:17:50] No, Exactly. It doesn’t happen very often. And Mom, I have another question. Can you tell us about what your first impressions were of Jesse when you first met her?
Rachel’s Mom Kathy [00:18:01] So before I met you came home from school and she said, I have a new friend. I have a new friend she’s helping me learn to spell. So, of course, I already thought, oh, this is going to be a good person because Rachel likes her and, you know, not everyone was always nice to Rachel, so I can’t remember how much later it was before I actually met you. But of course, I was predisposed to like you from the beginning because you were Rachel’s friend. So, you know, there are lots of stories to tell about you, of course, the good ones and someones where you got yourself into a little trouble. But, you know, I can’t remember all. I do remember Rachel coming home from school and singing your praises that I remember clearly because she was in a new school and I was so happy she had a friend.
Jessie [00:18:59] Well, actually, I sat on her.
Rachel’s Mom Kathy [00:19:04] Well, that is how I met your mother.
Rachel [00:19:08] Tell us about how you met, Nancy,.
Rachel’s Mom Kathy [00:19:09] That’s how I met Nancy. She actually called up and said, I have to apologize because my daughter sat on your daughter.
Rachel [00:19:21] And were you offended on my behalf?
Rachel’s Mom Kathy [00:19:27] Well, no, because I think you came home and I don’t remember if you told me or you were like your mom, it’s OK, so you’re OK with it. Nancy was terrified. So I was like, it’s apparently OK. It’s OK.
Rachel [00:19:44] You remember why you sat on me?
Jessie [00:19:46] It was because I was going I was playing with the monkey bars and the kids laughed at me and that’s why I sat on you. And you are so understanding.
Rachel [00:20:06] Yes, one point I got in my favour. Sit on me, I understand.
Jessie [00:20:14] Oh, yeah, I remember when you and. You made up so, you made up so many wonderful worlds. And I was like, I was so intrigued by that, I mean, I wanted to, like, jump in.
Rachel [00:20:38] Well, yeah, thanks for building those worlds with me.
Jessie [00:20:41] No problem. Yeah, and what would you say I am now?
Rachel’s Mom Kathy [00:20:51] Well, amazing. So, you know, you’re interviewing me on a four-hour podcast and, yeah, after your stroke, you couldn’t talk, so. And you’re back being a full-time artist and dancer. And that’s pretty amazing, I think.
Jessie [00:21:11] Yeah, pretty much. And that is all the questions I have for you.
Rachel’s Mom Kathy [00:21:17] Can I ask you a question?
Jessie [00:21:19] Sure.
[00:21:20] How do you think you’ve progressed?
Jessie [00:21:23] I think I have progressed quite nicely. Yeah, I think so. And after my stroke, I felt like. I had my surgery, I felt. Downhearted. By now, I’m alive and pretty much the happiest person in the whole entire world.
Jessie [00:21:54] Part three, my mom,.
Jessie’s Mom [00:21:57] May 30th, 2016, Jess yells for some help, something she hates needing. I deflect and reroute and no eruption occurs. She starts to brush her hair while sitting on the couch and yells because there’s a knot. I ask if I can do it gently. We sit there for 10 minutes, brushing, breathing, brushing, breathing. We move on. Slightly later, while she’s watching Propellor on YouTube. She rarely goes on YouTube these days because it is mostly banned as it over stimulates her and she becomes manic and then aggressive or angry. Many things that used to give her pleasure now send her over the edge and are no longer manageable. A heartbreak. She sees herself in Dream, a Little Dream and calls me over. Mom, that’s me, then she starts to cry quietly, I want to do that, I want to be in the performing company again. My heart breaks over and over and over again into so many little pieces. Then I suck it up and say, that’s the goal. Just that’s the goal. Are we not all bruised by the reality of our grief, of our love, of our inability to make it all right? Are we not all awed, by how fine an instrument is our brain, our body, our soul, our heart. And finally, then the wonder that it is our friends and family who help us pick up the pieces and create the mosaic that is our life of loving in the grand scheme of the universe.
Jessie [00:23:42] Mom, how do you feel when we were in the hospital.
Jessie’s Mom [00:23:47] Scared shitless, bleep, bleep, bleep, bleep, bleep, bleep, bleep bleep?? But absolutely determined to figure out what was going wrong. All I remember Jesse really strongly and I don’t know if anybody else has this memory was because I was the one who went into the MRI room with you. And normally people are not allowed in the MRI room. And I was so scared myself as well. And I remember because you were scared to go in the MRI for us to find out. We were scared to go. I can just keep repeating myself. After you were you were terrified to go in the MRI machine. It really, really scared you. But you still really didn’t have language. Your language wasn’t coming out and you were holding on to a stuffed animal. And I promised you that I would be there with you. And normally they won’t allow people in the MRI room. But I remember I had to hold my arm around the machine in order and I was covered in lead aprons. And I had to reach my hand into the machine to hold your hand because I promised I would never let go. At the same time, this big machine was squashing. Into my face and making really, really, really loud sounds, as you know, and all I remember was holding onto your hand.
Jessie [00:25:17] Give me a second Mom. I need to go to the bathroom.
Jessie’s Mom [00:25:26] That is so you! Oh, my God. The moment of climax. And we all have to pee.
Jessie’s Mom [00:25:36] Hey, Jesse. Yeah. I will say one thing. Like, there’s so many things about the reality, like maybe what a doctor said or what happened that I don’t remember very well. There are other parts where there was a lot of strong emotion that I remember really, really well. So you being in the MRI was something that I remember because. I don’t think I’ve ever prayed so much in my life, but I knew that you were scared and I knew I did everything that I could to try and make you less scared. But I also knew that I didn’t have the power to make you less scared. And here I was holding on to this huge, scary machine that scared me as well. And I had to try to not be scared so I could breathe. And I remember Jesse, we did our breathing together and our blessing together. And all I did was breathe in and out through that big, long time, OK.
Jessie [00:26:40] So, Mom, I would like to talk to you about Boston. OK, well, we were like in the hospital in Boston right after my operation and stroke.
Jessie’s Mom [00:26:57] I’d say that the surgery was long and it went really, really well. The surgery went really, really well and after surgery went really, really well. And so we thought that this was well, it was scary. And we knew there was an alarm. There was a bit of a recovery. We were so excited, Jesse, that it had gone well. And then in the middle of the night, also, you were you started vomiting and you couldn’t stop vomiting and things just took a turn for the worse then. And we had thought we had come through what was the hard part and the hard part was actually ahead of us. I do remember it was touch and go there for a little bit. We didn’t know whether you’d had … We knew you’d had a series of strokes. We didn’t know whether you were going to have more strokes and we did not know whether you were going to live. And I remember thinking at the time, I remember collapsing on the floor and saying I couldn’t bear to lose both my mother and my daughter within a two or three month period of them. So, yeah, I also remember when they came in, while it was really important for them to wake you up and to get some response from you, it broke my heart and scared me not to have any response from you. And I hated the sound of them saying, Jessie, Jessie, who are you? Where are you? And I had to as much as I never, ever wanted to leave the room that you were in when the neurologist came in.
Jessie’s Mom [00:28:32] I had to leave the room because I couldn’t stand to hear the nonresponse anymore. You had no memory. You did remember who I was. But I was actually quite scared that you were going to forget who I was. And I was really scared at that point to see that you were unless I was in a room with you that you were going to forget who I was. So we we did a lot of trying to remind you of all the people who loved you and the things that you loved in your life and who you were as a person. We did so much dancing to get you up and out into the bathroom.
Jessie [00:29:06] I remember that.
Jessie’s Mom [00:29:07] Oh, my goodness. Or to eat. And we would sing songs. Oh, we were saying so many songs and I have such a bad voice. It’s terrible. And mostly we were so incredibly upbeat because you responded well to like high energy and that was. Yes exactly. You have a lot of energy. Don’t you?
Jessie [00:29:29] I do.
Jessie’s Mom [00:29:30] It’s showtime. It was exhausting but it was primal. Like there’s this primal. Love for a child that allows you does not allow you to ever, ever, ever let go. And so when I would leave the hospital, it would be very close to collapse. And I wasn’t sure I was going to be able to make through it. But I also didn’t feel like I had any choice about trying to make it through. There was a beautiful chapel in the hospital that was an all and all faith chapel. And I would go in there at least, at least once a day. And I’d have to say I, I would try to meditate. But mostly I went through phrases or prayers that I knew when I cried, and that’s where I went to cry. I would go in there and I would sob and then I would leave that there and come out again and go back to trying to be… The dancing frog, I feel like the dancing frog, yeah, Kermit the Frog, you know, I was thinking of the dancing frog in the Looney Tunes line or something that the was dancing frog, that whatever buddy only was the opposite for me. When everybody was watching, I was dancing. And then as soon as there was a quiet moment, I would fall apart.
Rachel [00:30:55] Did you learn anything about motherhood that surprised you through this experience?
Jessie’s Mom [00:31:02] Wow. I don’t know, I’m not so sure it surprised me because, Jesse, what I’m about to say is, is just that. That determination, determination, that determination to care for and get the best care you can for somebody because you love them so much and it’s not a love that is earned or taught or has even it’s just there the moment you give birth. And I knew that the moment, Jesse, we found out that you had Down syndrome. And at one point people gave us some strange advice about whether we should keep you or not. And that was right after your birth. And I knew that in there that I would do. There was a moment when I knew that in there I would do everything within my power, beyond my power to try and create a good life for you because I just loved you so much. And but I didn’t think after all the years that we spent together doing so many strange things, advocating for you, you know, fighting for inclusion, arguing with school boards, all the different things that I had to do, I thought those were things that then bought us time and space for you to come into your own. And what surprised me most was the fact that that I had to do this again. So having to do this again, the kind of fighting and determination to just hold on. So that wasn’t something I knew that I learnt about motherhood, but it was reinforced even more than my love for you as a mother was beyond anything I really had any control over. It was just it was in my blood to love you and to care for you and to fight for your life in the best way that I could or I knew how.
Rachel [00:33:09] So, Jesse, I just wonder if you could describe what your mom is like for us.
Jessie [00:33:14] OK, my mom advocates for me. And also she actually fought my battle when I was in high school. And you know what I take from that?
Jessie’s Mom [00:33:36] What what did you take from that?
Jessie [00:33:38] I took your advocacy into my own hands.
Jessie’s Mom [00:33:46] Can I ask you one other question, Jesse, about.
Jessie [00:33:48] You may.
Jessie’s Mom [00:33:49] Like sometimes when we go to bed at night, you bless me.
Jessie [00:33:52] I do.
Jessie’s Mom [00:33:53] And what do you say?
Jessie [00:33:56] I don’t know.
Jessie’s Mom [00:33:58] do you remember?
Jessie [00:33:59] I don’t.
Jessie’s Mom [00:34:00] You are, may you be?
Jessie [00:34:03] Happy.
Jessie’s Mom [00:34:07] I say may you be happy, may you be peaceful, may you be loved, may you be, but may you find joy in your own true nature, God bless you and keep you and love you, for you are God. And then you say to me. OK, well, never mind.
Jessie [00:34:21] No, I don’t remember, I do remember, but.
Jessie’s Mom [00:34:25] You call me all these wonderful things.
Jessie [00:34:27] Yeah, I remember. I remember what I actually said. I know may you be a wonderful, gorgeous, amazing, talented. Mom.
Jessie’s Mom [00:34:47] Yes, that’s what you say to me at night time. Yeah, that always makes me that makes me feel loved.
Jessie [00:34:54] Yeah. And so we still bless each other every single night.
Jessie’s Mom [00:34:59] Even if we’re pissed off with each other, right?
Jessie [00:35:01] Yeah.
Jessie’s Mom [00:35:02] May you be happy. May you be healthy? May you be peaceful, may you be loved. May you be safe and protected and free from fear. May you find joy in your own true nature. God bless you and love you and keep you. Night, night.
Jessie [00:35:30] Night.
Jessie’s Mom [00:35:31] Bye-bye.
Jessie [00:35:32] Bye-bye.
Jessie’s Mom [00:35:33] See you.
Jessie [00:35:35] See you.
Jessie [00:35:36] Love you.
Jessie’s Mom [00:35:37] Oh, yeah. Sweet dreams, my darling.
Jessie [00:35:39] Sweet dreams. I love you. Anything. Wonderful mom.
Jessie [00:35:48] Part for Rachel.
Jessie [00:35:50] Rachel, what was it like when I was in the hospital?
Rachel [00:35:54] I remember driving down and just not really knowing what we were going to find when we got there and just knowing that something really serious had happened, but not knowing what that was going to mean. Exactly. And basically, it just felt like things were so scary and so horrible in a way that the best thing to do was to try to build as much joy into the room as we could to help us all survive and basically try to make you feel better because we knew it was such a hard situation and we didn’t know what it was going to be like. We didn’t know what the future was going to be like. But from moment to moment, we were trying to make you happy.
Rachel [00:36:40] And, you know, it’s also kind of weird because, like, I think we hadn’t had the chance to hang out like that since we were kids. It felt also like going back to, like, our childhood selves because we’d be like lying in the hospital bed together, watching TV and, like, spending all our time together and falling asleep together. I remember that. Yeah. I’m just like giggling together, like planning weddings, like all this stuff that we used to do when we were nine. But now we were doing it as adults, like in a hospital room in Maine. So it was kind of a surreal situation. It had really horrible elements in it and they would kind of intrude. These terrible moments would intrude. But we were living inside a kind of bubble or that’s how I felt this bubble of like basically a non-stop sleepover a letter I wrote and never sent.
Rachel [00:37:33] A letter i wrote but never sent –
Dear Jesse, I remember the morning in Maine where the fog came down. I was running on the beach without shoes and it was as if I was nowhere. And everything was like, you were in the hospital, then you must have been asleep, but you wouldn’t have been alone. You were never alone with your dad beside you or my mom or me holding your hand and the nurses coming in and saying, Hey, superstar, hey, beautiful. And none of us knew exactly what you were thinking and all of us trying to distract you to make such a loud song and dance we could all live inside it. And in that fog, any colour stood out and I stopped to watch a boy bobbing strangely in the grey, unable to recognize it. I was just starting to understand the ways your stroke had loosened the boundaries of things. Here, I would like to ask you some questions like, do you think it’s possible for a relationship to take physical form to become an invisible force, something like gravity occurring that rises, enfolds us and pulls us back? My handprint is painted on your bathroom wall with my grade three signature written underneath. Every time we pass the bathroom, you say, is your hand, there is your handprint? And I say, yes. Then I take my hand and put it over the child handprint covering it completely. My hand has held yours at so many different sizes.
Jessie [00:39:27] Part five Depressed Dolphin.
Rachel [00:39:30] So Jesse has this painting she made at being studio. It’s called Depressed Dolphin. So in the painting, there’s a giant dolphin that takes up most of the space. The dolphin is brightly coloured and is suspended underwater in a blue sea.
Jessie [00:39:51] OK, so the depressed dolphin looks like a yellow and black dolphin that’s under the sea, most sort of depressed. Well, the first time I’m painting the depressed dolphin. How did you react?
Jessie’s Mom [00:40:12] I laughed. Everybody laughed and laughed so hard. First of all, it was so big and joyous. And then when I sort of walked up close to look at the title, it says Depressed Dolphin, and it made me laugh. I didn’t think the dolphin looked very depressed, but then it made me think, is the dolphin depressed like all of your paintings?
Jessie’s Dad [00:40:34] I was struck by the colours, which I think really, really represent. Almost everything you paint has a lot of wonderful brightness and colours bursting out all over, and there’s a tremendous amount of life and happiness there. Now, this painting, which is kind of a large yellow fish with black spots and a lovely blue ocean, I got to be honest with it, the fish didn’t really strike me as depressed. In fact, he’s got a little smudge toward the base of his face. That looks like a smile. So when I said, oh, Jess, what does this represent? Thinking it represented you on this journey where you were kind of underwater, floundering. I’m not sure where you were going to go at large in this big kind of mysterious world. Try to reorient yourself that you called a depressed dolphin.
Jessie’s Mom [00:41:25] And I don’t know that we’ve ever had a conversation about it, but I can’t figure out why you called it depressed dolphin. Can you answer me that?
Jessie [00:41:33] Well, I was healing from a stroke. I felt like a long and. Very depressed. It was like I was like a part of the of a dolphine. And I thought the fact and that’s why I called it depressed often now I feel confident in free that I’m like a free spirit.
Rachel [00:42:06] And what does it mean to be a free spirit.
Jessie [00:42:09] To be a free spirit? It’s basically when you dance when you appreciate. Dance and is a way of moving to the beat in your own body and. I can be fierce and I can be funny and I can be silly, I can make quirky. And I don’t take no for an answer.
Jessie [00:42:41] Part Six Showtime…
Jessie’s Dad [00:42:44] We are excited, no thrilled, no overwhelmed, no ecstatic to welcome to the stage Jesse Huguette after a stroke, brain surgery and a second stroke. Jesse is here. He is here to perform for you to decide. Joining her on the stage is Rachel Grey, Rachel’s sister, Rebecca Grey, Kathy Grey, Nancy Huggett myself. Dan Leland, no applause, no applause. And, of course, the Four Seasons.
[00:43:23] You’re too good to be true, can’t take my eyes and assume you have a holding so much and like. I think that’s why we have to judge you by the da da da da da da da da da da. I love you, baby. It’s quite all right. I want the lonely night. I love you. Don’t make me wait. Oh, we may not be able to make that. Let me be clear, I love that you are still on key.
Debbie [00:44:51] OK, OK, that’s a wrap.
Rachel [00:44:53] Special thank you for this episode goes out to Jessie’s parents, Nancy Huggett and Daniel Lund, as well as Cathy and Rebecca Grey. Jessie Huggett played the role of herself and the hospital doctors down the line played the role of the announcer. The music you heard at the end of the show is, of course, the music of Frankie Valli and the Four Seasons Speak is hosted by Debbie the Dragon Radclyffe, co-hosted and produced by Rachel Grey, music done by Jesse Stewart.
Rachel [00:45:35] Our audio technician is Erin Flynn, and the podcast is presented in collaboration with CHUO 89.1 FM in partnership with Bronson Rise, a collective impact initiative of the Bronson Centre.
Debbie [00:45:53] Thank you for listening, if you like our podcast, please tell your friends, your neighbours, your family, anybody that you know.
Rachel [00:46:04] Thanks for listening. Bye bye.
Also, it talks about my artistic side and my professional dance side.
I am an intellectual, I love the arts, I am an advocate, I love challenges, I am a performer.
I am adventurous, open hearted, a mentor, loving, caring.
I’m an artist with Down syndrome, and in high school I was judged and labeled because I had Down syndrome and because I was different. I had struggles and challenges but that didn’t stop me.
I’ve been going to the studio for many years and I get recognized for my incredible abstract art work.
BEING has helped me, supported me and believed in me. BEING has given me a voice and a chance to express myself through visual art and creative writing.
I get to meet new people who share the same passion and it’s really fun.
I’m a valued person, an equal.
BEING’s original podcast series Speak is presented in collaboration with CHUO 89.1FM, in partnership with Bronson RISE, a collective impact initiative of the Bronson Centre.
Host: Debbie Ratcliffe
Co-host and producer: Rachel Gray
Music: Jesse Stewart
Audio Technician: Erin Flynn
Website Design: Luisa Ji
SPEAK is a BEING original podcast.
SPEAK brings you the stories behind the artwork at BEING studio.