28 – Yvon

Yvon, a woman with long blond hair, smiles at the camera. There is a stylized purple octagon superimposed around her face.

Yvon Stokkink talks about life after a stroke at 24, chronic fatigue, and choosing not to have kids.


Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.

So before we get started, I just want to apologize that I’m still behind on transcripts. I overdid it last weekend and triggered a pain flare, and I’m finding I need a lot of time to rest around my current round of medical tests and appointments. If you follow me on twitter, then you might have seen me talking about how my MRI results came back with some potential issues in my cervical spine. If this turns into a whole new chapter in my health then I’ll do a followup episode to my story in episode 1 so that my random interview interjections continue to make sense. But for now, I just want to say that it’s kind of slowing me down on the transcribing front. As for transcripts, if I don’t catch up by next week then I’ll switch back to a biweekly schedule for a while until everything slows down.

Anyway, onto the show!

Today I’m talking to Yvon Stokkink about life after her stroke at 24, chronic fatigue, and choosing not to have kids. And also, Yvon is from the Netherlands and I very well may have butchered her name, so I’m sorry about that in advance!

Before we start, here’s my disclaimer:

This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.

[guitar riff]

Brianne: Okay. So I’m still going to start with my standard question. So were you healthy as a kid? How was your health as a kid?

Yvon: Well, my health as a kid was pretty normal. I don’t really recall being sick much at all. The only thing is that I had a hip disease as a kid, which started when I was seven, which kind of presents like the wear and tear that the elderly get when you get arthritis. That would show up on my hip bones, even though I was only seven years old. They tried to remedy that with bed rest. So I would be in the hospital for I think three months or something, but in traction. So my legs would be off the bed. Eventually I got surgery for that where they rotated my hip into the socket a little bit and that pretty much cured it. So that’s the only physical thing that I remember having as a very young kid.

And then I think in high school I did have some issues. I had a chronic headache, when I was about 14. And after that I had some chronic back issues that lasted for a couple of years and I’ve been seeking various treatments for that and went into seeking alternative medicines for that. Then I think in hindsight, I think a lot of it was stress related because I’ve always been pretty much a perfectionist. So I can recall pretty much running, running metaphorically, but you know, psychologically speaking, running throughout high school and on. And then when I was 24, I had a stroke and that kind of led me on the path that I’m on now and that still presents my limitations today. That just came out of having that stroke 15 years ago now.

Brianne: Wow. So you said 24. So what were you up to at that time in your life? Were you working? Were you in school?

Yvon: I was eight months out of graduation. I had just gotten my bachelor’s degree in public administration and I was working in my very first job. I was working for a local government. And I remember being in the car, my husband was driving, thank goodness. Because I don’t know what would’ve happened had I been driving, because we had been to a friend’s birthday and usually my husband would want to drink one or two beers and I don’t really care much for that so I’d drive home. But that day I had a very intense headache and I asked him to drive back. And on the road, I could tell that my vision on the right side was gone somehow. And I was feeling very… I’m tempted to say tired, but it was something completely different because I felt like I was leaning back onto the headrest and slowly sinking into it. And it felt really odd. And I remember reaching for the radio volume to turn it down and tell my husband that I wasn’t really feeling all that well. He wasn’t my husband at the time, but same person.

Brianne: Okay. Gotcha. So you were not married yet, as an aside.

Yvon: We got married since, yeah. But so I was feeling really off and I was feeling tingling sensations on the right side of my body and I couldn’t really see on the right side, but I hadn’t really consciously registered that. I just knew that I was feeling weird and he said, “Well, do you need to go to the hospital?” And I said, “No, I’ll just sleep it off,” or “I don’t think it’s anything serious.” But he looked at me, like not really trusting it, and he said, “You know, no, I’m going to drive you to the ER because this doesn’t seem right.” And I said, “Well, yeah, that’s probably a good idea.” But I was really out of it. And in the ER, they couldn’t really find anything at first because they didn’t really suspect me to be having a stroke because I didn’t present in the normal way.

Brianne: And probably your age too.

Yvon: Yeah, my age. Exactly. And someone had come in earlier that day who had presented with very similar symptoms but who had a migraine, and that can sometimes present in that same way. So they wanted to keep me for observation for 24 hours and do some tests the following day to see where to go from there. And I really went nuts that first night. I remember that because I was suddenly hypersensitive to sound and I could hear the snoring of the people in the ward, and I could hear a nurse moving bedpans in the hallway, and it was screaming with loudspeakers into my ears and really drove me nuts. And they called my husband, I think at 3 AM, and he crawled into bed with me to comfort me because I was really upset. And then the next day they did a scan just to make sure, and then a neurologist came by my bed and said, “Well, you just had a stroke.” But considering my age, they also said that they expected me to make a full recovery. So, you know, it’s an intense word to hear obviously, because a stroke tends to have a bit of an impact. And I still notice that when I say that to people, even though for me now it’s as normal as saying that I have blonde hair. You know, it’s just such a part of my story. It doesn’t really feel that way, but I can tell people are like, “Oh! A stroke. That’s really ‘serious.'”

Brianne: Yeah, it’s a big deal.

Yvon: Yeah, it’s a big word. It’s a loaded thing. But he did say that he expected me to make a full recovery, so it made an impact. And we were shocked for a moment, but we were also relieved, like, “Okay this is intense, but we’ll bounce back. And we’ll take it from here.”

Brianne: And you had an explanation.

Yvon: Yeah, I think so. And I listened to your first podcast to get to know your story. And I noticed that that made a big difference for your entire journey afterwards. To have an explanation from the get go, to have a diagnosis. And you still have all of these symptoms that you need to navigate, but you know where it’s coming from.

Brianne: Yeah. And so with that, with having a stroke at 24, what kind of intervention do they do? Because I imagine a lot of this will be rehabilitation and stuff, but what do they do while you’re there in the hospital?

Yvon: Well, they had a stroke protocol that everyone having a stroke follows. And the first one is to stay in the hospital for the first six days at least. And then depending on how serious it is, you need to stay longer. But at least six days. And I only needed to stay for those six. And during those six days, they run every test imaginable. So, you know, I really got the feeling that I was being turned inside out with all the tests that they could… You know, they did all sorts of bone scans and all kinds of blood work. And I think I had an aphasia test done on me at least twice because one of my strokes… I actually had two strokes technically speaking because it was two separate areas of the brain. I’m actually thinking that maybe, perhaps later that night I had a second one. And where was I going with this?

Brianne: The tests that they did, you said they did a lot of aphasia tests?

Yvon: Yeah, I did aphasia tests because one of the strokes was very near to one of the language centers in the brain. So it’s quite fortunate that I did not have aphasia at all. And so they ran all sorts of tests, but I did seem, for all intents and purposes, fine for someone who just had a stroke. So they sent me home after six days and after that I had some physical therapy and some rehabilitation type therapy where they help you cope with daily tasks. So they helped me to see if maybe I needed a different tool to peel potatoes because I have a mild spasm in my right hand, so those are kind of the things that resulted from it. I have a field cut as they say, so I have no peripheral vision on the right side. So I cannot see my own hand here. Now I can see my hand, but…

Brianne: Kind of straight out in front of you compared to maybe a foot over to the side. Now I just moved my hand off camera so my explanation isn’t any better. But that’s what it looked like.

Yvon: And I have a mild spasm in my right hand, but mostly the biggest thing that has come out of it is that my energy level dropped dramatically. I had 10% of the energy that I had on a normal day before, but that was on a really good day. So usually it was a lot less than that. So particularly in those first months, I slept a lot and it least 10, 12 hours a night. And about two or three hours in the afternoon because I needed naps. I’ve only recently gotten to a place where I can skip those naps, so there’s still progress. So that’s really great. So on a really good day, I had about 10% of my energy. So that’s, you know, that’s quite intense.

Brianne: That’s dramatic. And so you went home after a week. Did you live with your partner or did you live with anybody at that time?

Yvon: Yeah. We we had our own home.

Brianne: I’m sure that would make a difference too. To go home by yourself versus going home with someone else.

Yvon: Absolutely.

Brianne: Okay. And did you go back to work? Or what did you start doing, because I’m sure even just that sleep schedule… Everything else aside, because I’ve had that sleep schedule, that sleep schedule makes it very hard to do anything. So how was it coming home?

Yvon: Well for the first few months I didn’t work at all. But because we had a holiday trip booked to Brazil of all places…

Brianne: It’s far!

Yvon: Yeah it would have been, we didn’t go. But we asked the neurologist about that, you know, “We had that booked, should we cancel that?” And he was all confidence that, “No, I think you’ll be able to go.” And we had planned for that in August. So come June, July, I was thinking, “You know what, I’m not going to not work and then send people a postcard from Brazil. I’m not going to do that.” So let’s just try and see if I can work a little bit. And I tried on what they call here in the Netherlands a therapeutic basis, which means that you’re just trying it out. And I tried on two different days for one hour, to just be there and check my email. And instead of being in the open floor office with everyone else, I would retreat into a cubicle and I would just check my email. And I needed to do a 45-minute train ride to get there. And that was so intense to just sit there for an hour and just check my email and barely talk to colleagues and I’d go home and I’d manage, sort of. And I remember coming home completely exhilarated that I did it, which is telling in and of itself, that you’re that happy that you can be there for an hour physically.

Brianne: Yeah, just physically show up.

Yvon: But I was so exhausted that I was just lying on the couch in a fleece coat and a blanket over me and I was still shaking because I was completely exhausted. And that was in summer. So, you know, it was 25 degrees outside and still I’d be shaking cold. And I would be too exhausted because I’d try that on a Monday and I was supposed to try again on Friday, but I’d have to call in sick again because I hadn’t recovered from that first hour.

Yvon: And I tried that for a little bit. And then I paused for a few months, thinking, “Oh, maybe I need to recover a little bit more.” And then come December, at the end of December I remember thinking, “I’m not going to do it like this. This is just not doable.” And so I kind of drew my own conclusions. My job was really supportive and they really helped me out and they gave me all kinds of leeway that I needed, but I told them, “You know what? This is just not worth it.” Because it’s too hard and I’m barely doing anything and it really cuts into your social life as well because if you have your energy that low, then even just having a visit from a parent or a friend for an hour would be so taxing. And that would either cut into that one hour I wanted to work, or if I had tried that hour I would cancel everybody else. So that was way too intense. And so in a way that was also an easy decision to make because it was that hard. So I’m still to this day very grateful that that neurologist was so optimistic at first because that way I could slowly reset my expectations. Whereas had they told me right in that moment, “You know what, you’ll never work again and you won’t have kids and you won’t have all of this,” then I can imagine going into a deep dark hole of depression.

Brianne: Yeah. It feels like your life has been taken away.

Yvon: And now I can just gradually discover for myself, you know what, if it’s this hard, I don’t want to do it anymore. And so that really helped.

Brianne: Yeah. And I think just the way that you described it with work is such a good point. On the one hand, it was taking so much out of you to just go and show up and you’re going, “Well why am I doing this if it’s the only thing that I do all week. And I’m not even… The value that I’m providing them isn’t… Like nobody’s benefiting from this.” And you mentioned going back on a therapeutic basis, so in general, I guess this might come up again, but how was it in terms is your healthcare covered? I think the answer is yes, but is there a good support system there for going through something like this? Something disabling?

Yvon: Do you mean support system in terms of psychological help or financial?

Brianne: I think I mean in terms of kind of everything. In terms of what kinds of resources do you have access to? So is your medical care covered? Is your mental health care covered? I know there is a disability system, do you know much about that? Any of those questions.

Yvon: Right. Well, I think we’re pretty fortunate here in the Netherlands. We have pretty good healthcare and I remember pretty much all of it being covered. We do have what we call a personal risk. So there’s a level of about a hundred euros, I think, a year that those first hundred you have to pay for yourself, but everything above that is covered.

Brianne: I think we’d call that a deductible.

Yvon: Right. So you have a range every year of what you have to pay for yourself. And it could be more because I don’t really… I tend to not be very up to date on that. But pretty much all of it is covered. And I’ve also been to a few psychologists over the years. If ever I had a phase where I felt like I really wanted to talk to someone, because you don’t really want to put everything on your partner. I have a very understanding husband, but it can be heavy on him as well. And sometimes it can be a great relief to just talk to someone who you don’t feel is burdened by your story. So that really helped. But that was all covered. So the health expenses have never been a factor for me.

Brianne: Which is great! New Speaker: Yeah, that’s a great luxury to have. That’s not given to everyone.

Brianne: Yeah. Okay. So that was a tangent. But so then you decided not to go back to work. So you’re at home and you were living with your partner, not yet husband.Did you guys decide to get married soon after that?

Yvon: We did. Yes. Because that was actually, that was always our plan. And we had already been together a very long time, because we got together in 1995. So that’s, you know, ancient. [laughs]

Brianne: Yeah. Just a couple years ago.

Yvon: A couple years ago, yeah. And so when it happened it was 2004. But we did decide we wanted to wait until we knew for sure if we got disability from the government. And we both agreed that that wouldn’t affect whether or not we would get married, but just the size of the party, because then you’ll know if you’ll have the income to support that. And otherwise you just have to rethink it a bit and make it a bit smaller. But thankfully I did get it, so that was not an issue. And my husband proposed to me a year after the stroke and then we took some time to plan and we got married in ’07. And actually even just considering a wedding day was daunting to me because I could basically never be active for more than two hours of anything.

And usually if I go to someone’s birthday party at a person’s home and I’d be there for an hour or sometimes two if I really stretch it, I would have to recover from that for two or three days. And of course, if you’re getting married, you’re willing to recover for a month. But still, doing it for a full day, what would normally be your schedule, was not doable. So then one day I had the light bulb moment of spreading it out over two days. So we decided to have the photography session and then the actual city hall ceremony would be on Wednesday, and then I could go home. All the guests would have lunch together at my mother’s home and then I’d have a day of rest. And on the Friday night, just the evening, we had the party for all the other friends and all the other family members. And so that worked out great.

Brianne: Yeah, that’s a good idea!

Yvon: Yeah. You have to get a little creative and it worked out beautifully because only our day guests for the ceremony needed to ask for some time off for those two hours. But since that was only a few hours, that was not a big deal. Plus that’s just your parents and siblings. So they are of course willing to take a day off for that. And on a Friday night it’s everybody’s night off anyway, so nobody was really out any other extra time. So it wasn’t even an extra ask of family. So that was it, it worked out brilliantly.

Brianne: Yeah. Simple. I think that’s… it’s so interesting to me within my communities and books that I’ve read, I’ve read two books that are about people living with chronic illness who have gotten married in the middle of it. And one or two people that I follow on twitter as well. And it’s interesting, and I was not doing well at the time I got married either. It’s like this whole other layer where there’s this day, and our family and our friends are there, and we want it to mean something and, like you say…

Yvon: Yeah. And you want to be well enough to really enjoy it. Because that’s the thing. I mean, I can physically be there, but I don’t want to be a zombie, you know, I want to actually feel like a person on that day. And we wanted to have some kind of energy to connect with other people and you know, we danced at our wedding,

Brianne: Yeah. And that’s great. And it’s funny, we just have to use our coping mechanisms, but more. Because, do you… So, I guess this might be an in-the-present question and I know we have more story to cover, but do you have things that you notice that you can use a little bit if you’re like, “I need today to be a good day, so I’m going to drink coffee or whatever it is.” Like are there places that you can tweak a little bit? It can be hard, because sometimes they have a price too.

Yvon: Yeah. Well for me, it’s mostly a mental game. So yeah, I notice that things like coffee or anything else doesn’t help. I have for a while used a supplement called guarana. I don’t know if you know it, but it’s an NRG herbs and it basically has the same effect of caffeine only intensified. So it’s like the equivalent of 10 cups of Espresso I’ve been told, but without side effects by the way. So that’s really good. It’s all organic and stuff. But I noticed that that really made me feel a little frazzled, like really revved up in my head, like you’re trying to drive a car, but your handbrake is still on and you’re spinning your wheels a little bit. That was kind of the effect it had.

So for me, the biggest change in this particular example, but also the biggest progress that I’ve made over the years is just changing the way I think about it. Because you can do so much by changing the way you respond to a situation. And if you teach yourself that long enough, then you can anticipate that and you can structure that. And instead of trying to control every condition, which is very limited and also costs a lot of energy to be that controlling. “If I do this and if I only stay for two hours and I’ll have to take a break and I’ll have to bring my headphones…” And it’s understandable and in a way it speaks to a kind of creativity of trying to do it anyway, but it ‘s also very cramped.

Brianne: Yep.

Yvon: And I see that more in others who are also dealing with some kind of chronic situation and it’s a very understandable thing to get into, to want to very tightly control all conditions.

Brianne: Like micromanaging.

Yvon: Yeah. And you end up wasting a lot of your precious energy by doing that. And I have found ways to relax more into that. And that took me a while because relaxation is not my natural tendency. But I’ve learned my way into that. And now I’ve come to the place where I know that if I have something scheduled, I can just summon it and do it anyway. Because I know that if I can just do it anyway because I want so much to just do it and I want to just be a person every once in awhile. You have to break out. Sometimes you get this need, like you’re feeling a little claustrophobic and the walls are just closing in on you. And sometimes you just need to get out and be a person. And I go shopping with my sister for instance, and I know that I can buy everything I need online, but sometimes you just need some retail, an actual brick and mortar situation. And it’s not for the shopping obviously, but it’s just for the experience of being there and doing something normal and talking and laughing and lunch somewhere.

And I’ve managed to do that for six hours, which is crazy. It’s like a marathon. But I can do that because I think I’m running on adrenaline or something and I do have some setbacks after that, but there I think lies the biggest challenge to not feel defeated in those moments afterwards and not go into all, “I shouldn’t have stayed this long” or “I shouldn’t have done this” or “I shouldn’t have done that.” Because again, however understandable that is, it just doesn’t help you. It’s another big leak of energy where you’re really wasting your precious resource where it’s much better spent to just relax into the rest and know that you’ll be back on your feet again at some point.

Brianne: Yeah, yeah. It definitely shifts, because I think it’s totally okay to get upset and to feel grief sometimes, but if that’s how you feel.

Yvon: Oh, of course!

Brianne: And I don’t think you’re saying that it’s not. But it’s like, it can take over.

Yvon: Absolutely. But I think it’s one thing to just be bummed, and I still do, I still have that. I think the better I get at sometimes shifting my emotions and sometimes shifting my mindset, and I actually get a boost of energy from that. And that works great. And I can do a lot more things because I can do things with ease now that I haven’t been able to do in many years. And that’s really wild. But at the same time, if you stretch that 10% that I have to like 20, it’s still only 20%. And there’s still so many things that I can’t do. And you know, I’m not even remotely considering things like a job, that’s like miles away. But still compared to where I came from, it’s a really big leap. But at the same time, you’re still running into your boundaries on a pretty regular basis and that still gets really frustrating. And sometimes I can shift my way out of that and just give myself some relaxation, and sometimes it just really pisses me off and I just really get frustrated. And then the trick is to just not let the frustration really frustrate me so much, that I’m not really beating up on myself for being frustrated. And just telling myself that you’re allowed to just be frustrated, because of no other reason than that you’re just human and everybody gets frustrated from time to time and that’s okay.

Brianne: Yeah. And it’s one more temporary state. Like this is how you feel right now and you can just let it wash over you and then let it pass.

Yvon: Exactly. And I think that once you start to be okay with being frustrated, then you’re already being a little less frustrated.

Brianne: Yeah. Yeah. It just starts to shift.

Yvon: It starts to shift a little.

Brianne: Yeah. Okay. So that was good. That was a good direction. So I want to come back to, so you spent a few years recovering and then you got married and you just mentioned that you don’t work still. So I would love to know about all of the different ways… So you’re married, you’re in your 20s, and you’re adjusting all of your expectations for what your life will look like. You mentioned that you had a really optimistic neurologist and you felt like that let you make your own decisions about what you wanted to do and what you didn’t want to do. So how did that process unfold? Like what were you trying, what were you ruling out? What have you found that you like to do with your time? This is a really bulky question, but however you want to answer it.

Yvon: Yeah. Well, I think have always been a very ambitious person and that has both helped me and hindered me at the same time because on the one hand, it’s very good to be able to see the potential and be able to get excited about that because it’s a great source of energy to have goals that you want to move toward. But at the same time, if you’re too driven about them, then you’re kind of running into your own walls all the time. So that happened a lot. And so I think even with basically what I’ve been calling chronic fatigue after the stroke, I’ve had several burnouts that compounded the already existing chronic fatigue simply because I was just trying too hard. And I don’t for a second fault myself for that. I mean, I did at the moment, but looking back, I can see how you might do that. I mean, of course you’re trying to make the most out of what little energy you have. And of course that leads to some cramped behavior that ends up hurting more than it is helping. But it’s so very understandable to fall into that trap. Because you really, how could you not want to expand your world a little bit when it’s gotten that small?

Brianne: Yeah. And whenever you have a good day, or for me at least, whenever I have a good day, I’m like, “I’m feeling good right now. What can I pack into this day?” And sometimes it’s like, don’t pack so much stuff in. You need to slow down even if you feel good.

Yvon: For me, it’s often the good days, I would want to make them my benchmark in a way. Because I think if, neurologically speaking, if this good day is possible for me, then why in the world can I not have that all the time? And that inconsistency has been so frustrating. You just want a reliable recipe of sorts that if you do this, then maybe you have to compromise a little bit of this. But if you do that, A, B, and C, then you’ll have that high energy again. But I have yet to find one.

Brianne: That’s 15 years of experimenting.

Yvon: Yeah. Yeah. So you have to work with the energy that you have, but at the same time, and I’m still learning this, to not chase the high moments. To not want to tweak the conditions so that you have as many high moments as you can find, because you end up working against yourself and you end up with fewer high moments.

Brianne: Yeah. With burnout. Ugh. That really hits me. It’s true. Trying to find the perfect recipe is a really good way to describe it, because I’ll look back over the last week or the last couple of days and be like, “Okay, what’s different?” And the truth is there’s never any pattern. I’ve never found a pattern.

Yvon: No, no. And I think even if you think you do find a pattern, I think that also can be another attempt at control and you’re almost creating a self-fulfilling prophecy. You know, you’re like, “Oh, now I might be able to do better because I’m eliminating coffee.” And maybe that works, and for some cases it might really actually help, I’m not going to discourage anyone from trying that. But I think in some cases it can just be those desperate things that you try and you’re making them into a kind of self-fulfilling prophecy in a way.

Brianne: And it can become religious almost, or fervent, like I have to follow all of these rules and I’m just creating more rules all the time. And at some point, some of those things that you’re doing probably aren’t impacting what’s happening.

Yvon: But then when you start to let go of them, you think you might not be well without them. And you know, there’s that whole anxiety. So, I found that really trying to just relax into that a little more and just… And you know, again, I’m still learning. But to just deal with the fact that yes, you’re going to have a little more energy on some days and a little lower energy on others and you are not going to find a recipe that reliably predicts what you’ll have on any given day. And you just have to roll with it to a certain extent, and just accept that sometimes… and sometimes I also find that, like today for instance, I am not having the best day and I really hoped because we are having this conversation that I would be in my happy, bubbly state. And I wasn’t. So it can be frustrating because you think, “Well, I want to have this conversation.” And then I considered, “Do I want to cancel and do this on a better day?” And I thought, “You know what, no. Because first of all, nothing guarantees that that will be a better day. And second of all, I think we can still have this conversation.”

And I think that is much more empowering than trying to micromanage it. And it’s empowering to me. And it feels like a relief to me to think that even though I’m not having the best day, I can still do this. And you know, it’s one of the things that I’ve written about on my blog. It was called starting a “can collection,” like where I collect the things that I can do, because it shifts your focus in a more empowering way. And I think that particularly if you’re dealing with limitations, physically or emotionally, but limitations kind of press a very primal button because I think every single person on the planet has a basic need to be free. And when you’re dealing with physical limitation, you’re feeling very unfree. And I think that’s very difficult to come to terms with. And I don’t think we even should come to terms with it. I think you don’t ever have to accept that you’re not free because you are, you are free. And you have limitations, yes, but you can still be free with your limitations.

And I think that that discovery for myself has been the most empowering thing. And it’s also why I called my blog Embracing My Wings because you have to embrace the fact that you still have wings, you still have your freedom. You can still go all kinds of places that you want to go. The picture just might look a little different and you might not be able to do all things all the time. But there’s so much that you can still do and the options that you will have left are limitless because you have an unlimited number, if you made a list of all the things that you can potentially do, you would not come to the end of that list because it’s really unlimited and if you’re unlimited, you’re free.

Brianne: Yeah, it’s still uncountable. And it just, it looks different. And the timeline might look different.

Yvon: And of course you can still get frustrated with the certain options that are off the table for you. That might still be a difficult process and I’m not discounting that in any way, but I think it is very empowering to shift focus to all the things you can still do and just find a way to enjoy them to whatever degree you can do that in the moment.

Brianne: And also that makes me think about framing things as a choice, which actually I think connects well to what we were going to talk about too about the family stuff. But sometimes it’s easy to get really frustrated and be like, “Well, because of what’s happening with my body, I can’t do all of this stuff.” And sure that may be true within certain parameters, but it’s also true that I choose not to do some things because I don’t want that energy crash or I don’t want to have that impact on somebody else or whatever it is. And even as an example that doesn’t apply to either of us, some people have a lot of questions about relationships. Like “Should I date? Should I get married? Because it’s hard for me to imagine what it would be like to have a partner in a caretaking role.” And then if you are married, the kid question, which is what we’re going to talk about, is like, can you have kids? Maybe, maybe not. I mean there are lots of ways to have kids even if you couldn’t physically have kids. But that’s a big choice. So I would love to get into that more now that we have all the history.

Yvon: Yes, exactly. And it segues beautifully with the choice frame because I think that that’s where your power lies, to just choose how you respond to it because that is where you will always, always have your choices. Because you don’t have all the options on the table and you will have to find a way to deal with it. But you do have choices in that. You can be frustrated, you’re allowed. And you can grieve certain things. I certainly have. It took me a few years to come to peace with the fact that I might not be able to raise kids. And I remember being very defiant in the early years. And I remember loudly speaking to my husband, not because he was saying anything, but just because I was really rebellious in the moment. You know, “We are having kids and that’s just the end of this discussion! I have given up enough. The line stops here. We are having kids, end of discussion.” And he was smart enough to not fight me on that in the moment.

Brianne: Like, “yeah, definitely, end of discussion.”

Yvon: Yeah. And because I really felt strongly how unfair that that was. And I studied for many years and I have a bachelor’s degree. So, you know, I had certain smarts and I could potentially have all kinds of careers. But the only career that I really envisioned for myself was to be a mom, it was something I really wanted. And so that was something that really hit home. And I think that in the moment you’re so angry, and you go, “This is just happening and I don’t know how we’re going to do it, but it’s happening because you cannot touch that with me.” But I think that my defiance spoke to a gut feeling that I was already responding to that it wasn’t a very likely scenario at that point. And that’s where my defiance was coming from, that I knew that it would not be a very plausible situation because if you’re having 10% of your energy on a good day, then how in the world would you manage it with kids? And I cannot envision myself with a kid.

And I’d have these really ridiculous fantasies that, “Oh, maybe we’ll win the lottery and and I can hire a 24 hour nanny.” Which speaks to the depth of the denial that I was in. But you try to envision, you know, maybe a family member will come to live really close and they can take care of most of the things. But even then, if you really make that picture specific where you’re a mom to a kid who really doesn’t get to hang out with you much because you’re so exhausted all the time that you’re in your own bed most days or you’re so exhausted that you find yourself yelling at them because your tolerance for anything is out the window.

Brianne: And even just things like noise, when you know that you’ve become noise sensitive.

Yvon: Exactly. I mean you can’t really have kids and expect them to be quiet at all times. I mean, that would not be fair to them.

Brianne: Or possible for a long time.

Yvon: Yeah. Yeah, exactly. And I remember in that defiant moment I told my husband, “We are having a kid and that’s the end of it!” And you know, in hindsight, and I wrote about this too, that just like that in that one sentence I had bargained away my second, because I’d always hoped for two. And I already knew that that was not even remotely possible. And even later, just the possibility that it might be twins… I mean to consider having a kid, it has to be a really quiet kid that listens all the time and isn’t keeping you up at nights and even then it would barely be doable if you get realistic about that. And it took me a long time, but eventually I thought, “You know what, under those conditions I don’t want it because that picture does not look good to me.” It does not look… all the joys that I thought that I would have in having a kid wouldn’t feel joyful. If it means that you’re exhausted all the time and you’re leaning on your partner even more, leaning on family to take care of them and you’re not really being there for them and they have to be quiet around you and all those things. That realistically doesn’t look like a wanted picture anymore.

Brianne: Yeah. Yeah, it does. I relate to so much of what you’re saying. And even my sister has three kids and I’ve spent enough time with them, when they were babies to the present, where I know what kids are like, but I also know how different they can be from each other. Because I kind of think this is part of what you’re saying, they all have incredibly different personalities and they did as babies before they could talk and you realize like, “Oh yeah, it’s a complete gamble.” You could have any type of kid. It doesn’t have to do with who you are or who your partner is or genetics. I know those are factors, but seeing these three kids in the exact same environment who are all very distinct, ooh, that’s a gamble. That’s a gamble on my sleep and my energy and like… oof.

Yvon: And again, I think I wouldn’t, if anyone is listening who is right now dealing with that, I wouldn’t discourage them from anything because I think you really need to take your time and figure out what works for you because you know, it can also happen that it brings you so much joy and delight that it does give you a lot of energy or maybe the pregnancy gives you something that gives you a boost physically speaking. So I’m not going to, you know, to each his own. And for some it really does work or you do have a support system, and everyone’s situation is different. But I can say that it is completely possible to be genuinely happy without kids. I am now genuinely excited about the fact that I don’t have kids. I really do. I’ve made beyond peace with it. I’m very okay with that decision, but I’m also genuinely happy with how my life looks and I’m not feeling the lack of kids in any way.

Brianne: How long do you think that that took for you? So going from mad, which is understandable when that was a part of your plan… I imagine you talked about it with your husband a lot, you probably talked about it with other people a lot. Was there a turning point where you went from, “We’re going to do it anyway. We’re going to figure it out.” To, “I think for me – or for us, because I’m sure that you were both having this conversation – for us, this might not be the best choice because…” For me, I’ll just project for a second, for me looking at it, part of it is going, “Okay, well I don’t for sure have to make this decision at whatever age. I don’t know, whatever age you think you have to decide by. I can just wait and see if my health changes, if it gets a little bit better…” It’s like there’s two competing, “let’s wait a little longer” versus “we can’t actually wait forever” and everything else in that picture.

Yvon: Right. Well I know that it took me several years, and I think gradually I made more and more peace with it. I do know that my husband made peace with it a hell of a lot earlier than I did. Because he did want kids but I think his desire was less strong than it was with me. And I think he was also a little bit more… He tends to be a little more objective than I am, so he could just tell that this was just no go. And he was very much okay with that thankfully, because I can imagine different scenarios of that. But he’s not really even struggled with that, so that really made it easier for us both. But he’s also given me all the time I needed, so never really pressed the conversation because he knew that I would come to a conclusion at some point on my own. So that was really helpful.

I don’t think it’s a good idea for partners to really press each other on that, you know, we talk about it and keep talking about it. But you have to let each figure that out for yourself because ultimately, it’s a very personal thing. And I do remember, I don’t know really what the turning point was, but I do remember what the resolution moment was. Because at one point we decided that my husband was going to get a vasectomy, which obviously makes things very permanent. And that was I think two, maybe three years ago. Yeah, two or three years now. And I remember him saying at the bottom of the stairs, I was painting in my craft room here, and he was about to leave and he said, “Okay, I’m off!” And so I said goodbye. And then it registered and I was like, “Okay, I’m happily painting in my studio here. And he says, ‘Okay, I’m off.'” And I realized, “Oh, right. I’d almost forgotten that was going to get a vasectomy that day.” And I’d almost forgotten. I was just that okay with it. And I thought, “Wow, we’ve come a long way with this. I’m so at peace with it that it’s barely registering that he’s permanently severing, literally, permanently severing the option for us to have kids.

Because before we’d come to the vasectomy decision, we were both very crystal freaking clear on the fact that it just wasn’t going to happen. And even though there has always been progress over the past years and I can now say that particularly in the past year maybe I’m doing better than ever, which is great of course. But I have never once thought, “Oh, with this level of energy I might’ve been able to do it.” Or I’ve never regretted it, never reconsidered it. And I also see that even though I’m doing better than ever now, it still doesn’t feel like a fun idea at this point, because it’s still a big leap from where I am now to being able to raise kids and have that even be a remotely enjoyable experience.

And I think that’s the brutal thing about it, because it is brutal. If you really want to have kids and you’re dealing with the fact that you might not be able to, then that is just going to be really challenging. And I think it’s important to give yourself all the time you need to grieve that because you’re really grieving the loss of the child you will never have. And that is all kinds of intense, and if that is you then I feel for you, genuinely, because I know how hard that is. And give yourself time with that. But at the same time you can really make peace with that because you have to be brutally with yourself of what that picture is going to look like, because the dream of you having a kid is sparked from an ideal health situation. So you have to put that dream into the accurate picture of what your life is like and see if it still fits to see if it still looks like a picture that is what you want. Because you know, you always have choices in how you respond. But you don’t have the choice of changing those parameters. You just don’t. So you have a certain picture of what your health looks like now or what it realistically looks like in the near future. And you have to place that dream into that picture and see if you can honestly still say that it looks like a possible thing.

Brianne: Yeah. Yeah. And I also think, to what you said earlier, it’s important to note that for some people it does. Especially because when we talk about chronic illness or chronic conditions, there are so many variables about what’s causing people to have problems with energy or problems with whatever, and what they’re capable of or how long maybe they’re capable of running on adrenaline.

Yvon: Absolutely. I think if you do, for some that find that because they’re there now through their circumstances forced to be more active, that their body somehow adjusts to that rhythm anyway. So you can’t know that.

Brianne: Yeah. And for some people pregnancy can actually cause a short-term remission and also breastfeeding can cause a short-term remission.

Yvon: Absolutely.

Brianne: But you can’t know. It’s completely unknowable.

Yvon: Yeah. And I think that for as long as I myself have needed the mental escape of those dream scenarios of maybe I’ll go into remission… I needed to cling to that for a moment there and I wouldn’t want to discourage anyone from doing that. Even if it is clinging because I think it’s part of the process and for some it will work. So, you know, it’s not even a pipe dream and for some that really genuinely will work. So keep that option on the table for as long as it feels good for you to have it on the table.

Brianne: Yeah. Yeah. And that’s the key part. Does it make you excited to think about, or does it make you feel dread?

Yvon: Yes, yes, exactly. Can you relax into the picture because it looks good or is it something that feels very “if all of these ideal circumstances come together, then maybe somehow I can squeeze a little bit of something out of that.” And that was what it was like for me. My sister got pregnant a few years back and I considered that that would be the ultimate test for me. Because I’m really close to my sister, we’re a lot alike. And so I thought this is good test because if there’s any lingering grief or emotion around that, I’m going to feel it. And I had none of that. I could genuinely be happy for her. And it was not bittersweet for me at all. So that felt like a graduation of sorts. Like, “Okay, I’m really done with this.” So that’s good.

Brianne: Yeah, “I made the right choice for me.”

Yvon: Yeah. Yeah. And we tried babysitting for a little while, once a week on Monday. My husband is always home on Monday and we would babysit for the whole day. And we tried that for a few months and I had to give that up too because it was just not doable. I was so exhausted and I needed to cancel all other things and I needed my husband to pick up the slack and I’d find myself melting down or yelling at the dogs later, or just completely so utterly exhausted that I just couldn’t do that. And that was another hard one for me because I thought that I could at least glimpse a little bit of what it was like. And it was exhilarating to walk a pram across the street and just… I felt on top of the world that day. You know, you’re walking a baby and it’s not yours. But I didn’t really care about that because I felt really happy just getting a taste of it, you know?

And I’m still happy we did that because we did get a taste of it. And now, if we’re talking to friends who do have kids, we feel like we can understand a little bit where they’re coming from because we’ve faced a little bit of what it was like and how difficult it can be to get them to sleep, or get them to feed, and how nice it is when they sleep on your shoulder. And we got to experience it, and that’s really great. And that was an invaluable experience that we’ll always treasure. And we’re still very close to my little niece and she’s four now, so she’s fast. But yeah, I did melt the day we decided we had to give that up too. I thought, “Come on, where does the line end?” You know, I really wanted to hang on to that, but I knew that it wasn’t… it was really hard. But again, I’m really happy we did that now. And now we see her from time to time and sometimes we hang out with her for an hour. And then we’re also genuinely glad that she’s going. [laughs].

Brianne: Like, “Oh, quiet!” Yeah, that’s fair.

Yvon: So you also get the blessings of that, you know? So it’s again a choice of how you look at it. You can stay in the pain of not having that, but you can also refocus on the joys of having a connection with the little kid that you still get to be around and play with. And all of the troubles go to mom and dad. So we just get the fun part. There’s good in that too.

Brianne: That is the good part about being an aunt or an uncle.

Yvon: Yes! I’ll definitely settle for being favorite aunt.

Brianne: Yes, I get that. And that’s a good followup experience just for you to have, to really be able to know. Okay, so then what I was also wondering as a bit of a wrap up, unless there’s anything else in your mind… But just, you said that you still notice progress, you feel like you still are improving, so what are you up to these days? Like 15 years after recovery, which is at this point a significant portion of your life. What works for you? I guess I’m kind of thinking about, let me explain this more. One thing that people talk about a lot is how it’s hard to stop working, and if you decide not to have a family, there’s all of these things that maybe when you’re younger you think will be what is important about your life. Like when you’re 18 or 21 and you’re like, “I’m going to have a career” or “I’m going to have a family” or both or whatever. And one of the things when that isn’t where your life is going anymore is that you have to find a new purpose, I guess. That sounds really serious, but I guess it is serious.

Yvon: Yeah. That sounds lofty, doesn’t it? I don’t really like the word purpose because it makes it so heavy and filled with responsibility and something that you have to do.

Brianne: Yeah. It doesn’t have to be that.

Yvon: I think what we’re all wanting with that whole purpose idea, is you want fulfillment. I think that’s what you want that purpose for and that’s what you enjoy your job for. Because while letting go of the job was easy, what is harder is how a job connects you to the world and how sometimes you have the most meaningful or the most regular, frequent conversations with the people you work with because they tend to know a lot about you and it’s a way to get out of the house a little bit and be around people. And it also gives you a lot of perspective because you work with a wide range of people that you wouldn’t necessarily be friends with but still have to work with, that gives you a kind of perspective. But not having all of that, you have to shape that.

And I think finding that fulfillment has been a challenge, because I tend to want to make it a little too big and I’m really ambitious and I want to… I’ve tried to start online businesses and things like that. I’m a very crafty person so I paint and I create stuff. So I tried to launch that into a business that didn’t work at the time, but that was also because I was a little too intense and perfectionistic about it. And now I think I’m on the verge of launching another one, but I’m taking it slower this time and just leaning in and just knowing that I can gradually work my way up.

And I’m learning to lean into this notion of taking turtle steps. I really like that. It’s a concept that I came across from Martha Beck. She says a turtle step is taking the smallest step that you can think of and then cutting it in half. Because even baby steps, if we’re thinking about baby steps, we still tend to make them a little too big and we can’t do them all the time. And turtle steps are designed to be so small that you can barely not do them. I started just a few months ago by just going up to my art space and just sitting in that chair and just considering what I might do next. So it’s basically just a minute of sitting in the chair. And you can almost not not do that, even on your worst day you can do that. And then you build from that. So then it’s like, “Okay, every day I’m going to go up and I’m gonna draw one shape or something.” And then you do that or mix one color of paint. And then because you get used to that, you build a habit around that and then it becomes easier to do something for five minutes and then all of a sudden you’re painting every day for five minutes.

So those kinds of things work. But with those turtle steps, that’s the latest process I’m into. So that really works. And the mindset shifting works a lot. So even sometimes when I feel wary about doing something and I think, “Oh geez, I really don’t feel up to it., But I know that if I do it, I’m going to feel more fulfilled than if I watch TV on the couch again. Because while there’s nothing wrong with that and I really enjoy my favorite shows, I get a really good kick out of just watching them and I have the luxury to enjoy them. And that’s also a good frame of mind to have, because it is a luxury. But to sometimes just think to myself how pleasant it would be to have something done. To just order some supplies online, or to just do some small activity, and to just think about having done it and think about how fulfilling it will feel to have done it. And to have that intention of, “You know what, I can.” And there’s that “can” word again.

But I can actually sit behind the computer and I can actually focus on this one simple task for a few minutes and then I will have something that I can cross off my to-do list. And I think that can be a very fulfilling way to look at it and to coax yourself into a little more activity if you want to expand that. Also, I think what really helps me is to make sure that I get some form of exercise and preferably outside. So I have a dog and recently we got a second one, which is also another breakthrough for me. That was a big step because we’ve had two dogs before, but it was really intense, because one dog’s going this way and the other dog’s going that way and you’re having to tangle with the leashes and everything. And so that used to be really exhausting. And now I find that it’s almost effortless to walk two dogs. So to a healthy person that doesn’t seem like a big leap. But to me that felt like such major progress. So that’s really good.

So now almost every day I walk both dogs to the park and let them off leash. And that’s really big because two dogs can run off in two different directions and I’m not doing too great with spreading my focus, multitasking’s not my strong suit. If you don’t have a lot of energy than a single point of focus is usually better. But I’m really enjoying that. And I think just the act of being outside and actually breathing in the fresh air, it’s such a simple thing, but I think can work wonders for your health. It really can. That even if you just walk outside and just find yourself appreciating the trees or looking at the blue sky, that can really be invigorating and it can actually give you energy. And I think that’s also an important thing to acknowledge. Sometimes you think of activities and the expense and what it will cost you in terms of energy and how much you will have to recharge from that. But I think that it really helps to keep in mind that you’ll also get something, because sometimes you can also get energy by talking to someone.

Like this conversation with you, because it does take some energy. But simultaneously, it doesn’t cost me quite as much as just the activity does because I’m also getting something in return. There is a fulfillment that happens when you make a connection with someone else. You expand your world in that sense because for chronic illness, your life can become very small and the walls can feel like they’re coming at you. But I think with this online world that we also have the opportunity to expand our world, to really make the entire world our playground, which is really exciting. Because I’m here on an afternoon in the Netherlands and in talking to someone in Canada, and that’s just really fun. And there’s fulfillment in that and there’s a sense of connection that happens there. So will I be a little bit tired after this conversation? Sure. But I’m getting so much in return. And I think that’s really important to keep in mind. And I think that also makes the after easier because it’s just the price tag of fun that I’m willing to pay.

Brianne: Yeah. Yeah. And it’s like, “I chose to use that energy and I enjoyed it. And now I can think about that while I rest.”

Yvon: Yes. So basically, it’s reminding yourself of the choices you have, because you always have them. Even on your worst days, you still have choices. Just not all the choices you want, but you always have the choice on how you respond and how kind you are to yourself about the process. Because that’s also a very big one. And I think kindness to yourself includes letting yourself be angry about it from time to time. That is a kindness to yourself, because you’re a fricking human being and of course you want more than what you’ve got. Just let yourself be angry and let yourself be frustrated. It’s all right. And usually it doesn’t last.

And you should try not to take it out on those around you, that would help. But even if that happens, sometimes when I’m having a bad day and… You know, dogs are very sensitive to your energy, so they’ll use that day to be particularly annoying with their behavior, and they’ll do things that they know aren’t allowed. And I get annoyed with them, and sometimes I snap at them a little more fiercely than I really intended because I’m really tired. And then my husband will remind me, “You know what, give yourself a break. Because it’s okay. And the dogs will bounce back,hey really will. It’s alright.” So I think that’s a work in progress. But I think it really helps if you don’t… I think step one is to learn to not beat yourself up for it. But I think the advanced master class is to just let yourself have it.

Brianne: Yeah, Yup. I just agree. I don’t have anything to add.

Yvon: Ironically, letting yourself feel bad can be the fastest way to have another good day. And if you’re trying to have all good days, then you’ll end up with fewer of them because you’re too frantic about it and you’re too controlled about it. But if you relax into it and sometimes let yourself have a bad day, then that good day is going to come around a lot quicker than when you push or get frustrated or get really worked up about it and get lost in how you shouldn’t be having a bad day because you did everything right and you did the resting and everything. So, yeah, I think it’s just… compassion. New Speaker: It’s a process. Self compassion. I’ve been forcing myself to nap more lately, kind of because of what you’re describing. Some days you wake up and you know this isn’t a day when anything’s going to happen, so why don’t you just let yourself really rest instead of half fighting it in front of the television? Which, same thing. I think watching television is fine, but…

Yvon: I think it’s so interesting because I think in this really fast world where first of all, everything’s moving. Everything is moving fast but there’s also a very high pressure on being productive. But I think when you think about it, rest is one of the most productive things that you can do. But yet there’s such resistance to really leaning into rest. And even the times when I think that I am resting, meaning I’m laying on the couch and doing nothing but watching TV, I’m not really resting because I’m resenting the fact that I need rest. And I’m frustrated with the fact that I can’t do the things that I want to do. And if that is your mindset then that is basically what your entire body’s bathing in. Your body is bathing in the frustrations because your emotions really make for what your cells are surrounded by.

If instead you think, “You know what, I’m just going to go easy on myself today. I’m going to pamper myself today. I’m going to watch my favorite shows and I’m going to make myself really comfortable and I’m going to give this to myself as a fricking gift. To just let myself off the hook from every standard and every to-do list and just really lean into it.” And I can’t always get there. I still don’t always do. But I notice that when I really surrender to that need of rest and actually make it into a treat almost, then those high days come around much faster because I think that is really when you’re actually resting. But when you’re laying on the couch and being frustrated about the process, which is understandable, but it’s not very restful.

Brianne: Right. You get thought loops and negative thoughts and stuff.

Yvon: You can’t always shut that off. So that’s okay. There’s nothing wrong with that. But I think if you can tweak that a little bit and from time to time, lean into real rest and you really relax into not doing anything, then that’s a far more productive thing.

Brianne: Yeah. Yeah. That makes a lot of sense to me. Resting.

Yvon: Yeah. It’s always easier to say than it is to do. [laughs]

Brianne: Yeah, exactly. Easier said than done. Definitely.

Yvon: It’s still a work in progress for me too.

Brianne: Yeah. Yeah. All the time. Things change. [sighs] Yes. I’m going to be thinking about that today. I feel like we’ve covered a lot. Is there anything that we haven’t covered that’s on your mind while we’ve been talking? It’s okay if no.

Yvon: I think just because when you’re in a conversation, you really don’t tend to even have head space for anything else you might want to talk about. But I really enjoyed the conversation and I think we covered a lot.

Brianne: Yeah, no, it’s great. Thank you so much for talking to me. I’m excited and I’m looking forward to sharing it.

[guitar riff]

Thank you for listening to episode 28 of No End In Sight! 

You can find Yvon on instagram @embracing_my_wings, you can find this show on instagram @no.end.in.sight.pod, and you can find me on both instagram and twitter @bennessb. 

I’ve got many more stories to share with you, so make sure you subscribe on itunes or stitcher or wherever you get your podcasts. And if you’ve been enjoying the show, I would be so grateful if you could share a review on iTunes so that other people know what to expect.

As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.

And finally:

This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. One of these days I’m going to get to work on some spring and summer patterns. I’d love it if you checked us out at digitalartisanal.com

Looking for transcripts? Episodes 1-47, 54-57, and 62+ are fully transcribed.
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