POTS Diary with POTSpouse Tim and Leah

Tim & Leah Massey [00:00:00] Jill Brook: Hello, fellow POTS patients and lovely people who care about POTS patients. I'm Jill Brook, your horizontal host, and today we have an episode of the POTS Diaries with Tim, who is a POTS spouse, and his spouse, Leah, who was with us in the past, but she's here today to provide some outsourced memory, as I understand it. Leah and Tim, thank you for joining us today. [00:00:23] Tim & Leah: We're happy to, you're welcome. Thank you. [00:00:26] Jill Brook: So, Tim, can you tell us some basics about you? How old are you? Remind us where you and Leah live, and what are some Tim 101 tidbits we should know? Wow, Sounds good. Yep, I live here outside Metro Detroit, Michigan I'm 46, as is Leah and I grew up here .Spent a short time in Florida, where I managed to meet Leah and drag. Her up here, but other than that, I've grown up here in Michigan. The things that are most needed to be known about me probably is the way people most likely would describe me would be intense. [00:01:00] Tim & Leah: That's the thing that comes across most, most clearly from everybody. I would say the charitable describe me as intense. And so yes, I Taking things relaxed and easy is very, very difficult with me. That's probably the biggest thing personality wise. Hobbies, my biggest hobby that I enjoy is scuba diving, which, fortunately, my wife is the world's greatest wife, and she not only lets me go scuba diving, does what she can to facilitate it, and sometimes says, no, stop, you're going scuba diving. So off I go, and I appreciate that. Those are probably the biggest immediate off the top of my head things about me. [00:01:39] Jill Brook: where's the coolest place you've ever scuba dived? [00:01:42] Tim & Leah: My favorite around here where I live is in the St. Clair River. It's a very high speed, high current area we go. I get to go do that a couple times a week. I'm an underwater Cave Scuba Diver. So I go to North Florida and dive in the caves a lot and the coolest place that I've ever dove was Egypt. I got to take a trip to Egypt and did a week of scuba diving in Egypt. In the Red Sea. When you say Egypt. Well, yeah, not in the middle of the desert. Sorry. Yes, it was the Red Sea. Yes. [00:02:10] Jill Brook: Wow, okay, so you are adventurous. That sounds amazing. Okay, so a minute ago you mentioned that you had met Leah in Florida and dragged her up here to Michigan. Can we hear about how you met? [00:02:24] Tim & Leah: Sure. We both attended the same Kingdom Hall church like thing and I moved into her congregation. And this is a fun story. For the first year her mother loved me, but she hated me. The way she says it is she's never hated someone more than she hated me. It's ridiculous. True. And in about a six week period, she went from hating me to us dating. And then of course her mother hated me at that point, once I started dating her daughter. So that was a mess, but yeah. And the drag her to Michigan was facetious. She had lived in Florida at that point for about 10 years. So, you know, the idea of moving... She actually was born in Boston. But the idea of dragging her back up north it was trepidatious because of the cold, you know. But no she was happy to come and we've lived here ever since. And she's lived here longer than any place else. [00:03:13] Jill Brook: What attracted you to Leah? [00:03:16] Tim & Leah: Her personality, so I had mentioned that I'm intense. It's funny, her and her best friend were the same age, my age, and her friend objectively would have been somebody that somebody might have thought that I would have gotten along with better. But she was also very quiet and frail and I would have both physically and emotionally broken her just being who I am. I flail a lot and gesture and things like that. And Leah on the other hand is the opposite. She's very hardy. She's hard to break. So that was definitely what attracted me more. Just she was a much more outgoing person worked a lot better with my intensity, that type of thing. [00:03:51] Jill Brook: Okay, fun. So, how many years were you together before pOTS and related issues entered the scene. [00:04:01] Tim & Leah: Well, POTS has been, say, two to three years. We've been married 28 years? 26 years? That's it? That's it? It's only been 26? It only feels like that. I know, exactly. So, yeah so about 25 years. [00:04:11] Jill Brook: Okay. Here's a challenge. Can you like fairly quickly summarize what those years were like? What did you do together? What was... [00:04:18] Tim & Leah: sure. Yeah, actually, yeah. Well, for one thing, we had a pretty 1950s relationship. Leah has basically never worked the time that we've been married. We have three kids ...25, 14, and 9. They were and or are all homeschooled. And that was Leah's job. Leah's job was to take care of the family. And so I had started a business back in 1998. Ran that up until 2018. And very intense, a computer consulting business. And there were times where some emergency would happen and I would call up Leah and I would say, drop everything. I don't care what you're doing. Drop everything. I need you to do this. Go get this. Bring this to this place, et cetera, et cetera, et cetera. And so the joke for us was Leah has one job, just one. And it's whatever he needs at that moment. Exactly, exactly. Whatever. But basically she took care of the house. I took care of working and that's what we did for 25 years. Along with things like training for 250 mile bike rides together, or he doing triathlons and half marathons. So there was a lot of adventure in with the work, but it was definitely an active lifestyle as a family for those 25 years. Sure. And I like scuba diving and I got very little time where I could like leave the state, but you know, I dragged the whole family to Florida. I'd go do some scuba diving. They would hang out in Florida, that kind of thing. There's a lot of dragging in our life. There's a lot of, there's a lot of dragging in our life. Now it's your turn. Okay. [00:05:40] Jill Brook: Okay, so that was a good chunk of time. What did you observe from your side of things when you watched Leah have these health issues come on? [00:05:51] Tim & Leah: Well, we were talking about it a little bit last night, and it was tough. With this disorder, it's not like cancer. Where, okay, you feel something, you go to the doctor, and the doctor says you have cancer. It was months of just Leah being tired all the time. And we were talking about one of the questions that I had reviewed last night was something like, you know, what was your first sign of POTS? And there's this thing called chip dropper. They come and drop wood chips in your yard. You don't really know how much they're going to drop. Well, one time they dropped 10 cubic yards, which is a lot. I mean, it's like a pile five feet by five feet by 10 feet. That might actually be like, like. 30 yards. It was a massive pile. Massive pile. It was literally like 5 feet by 5 feet by 10 feet, 12 feet long. It was massive. And this is the second time we had done this. And Leah was, yeah, and Leah had started to have problems. And she was like, I can't do this. She would fill up a little wagon, like three cubic feet of, of mulch and move it into the garden. She'd done this a couple of years before, no problem. She gets this load and she's like, I can't do this. And I'm like, just do what you can. And so she had settled on, settled on, this was like really bad. She settled on doing one and a half loads a day. So this gives you the kind of idea that the type of person that she was. She would be normally just do multiple loads a day of moving this mulch. Her health was quote, unquote, getting bad. And that was what it was, was like, okay. You know, just move one load and then fill up the load for the next one and then, you know, dump that load and do one more load the next day, that kind of thing. And that was it. And so it was a constant, this whole thing for three years now has been a constant stream of, of down, but unfortunately it's not ever a constant stream of down. It's like, you know, down, down, down, up, up, down, down, down, up, up. So it's like three downs for every two ups. And it's like steadily down, but on a day to day basis, sometimes it feels like things are going up and then it's down. And then sometimes it feels like they're going up. So you have no idea. Is this temporary? Is this just a thing, you know, okay, great. And we'll get over it and move on. So it was three years of that. And so, but that was fairly early. Probably mid 2020. 2021. Was it 2021? Yeah. Okay. So it's like 2021. And you just don't know where the bottom is. And you keep thinking that things are going back up, you know, but they never do. You know, so I, you know, I don't have that. And so neither of us have that, oh, something's wrong. Let's go figure it out. It's just a constant stream of, of little things. Until all of a sudden you realize, I can't do a quarter of the things I need to do. Something has happened. [00:08:25] Jill Brook: Yeah. Yeah. Three years is a long time to go through that. I mean, were there phases, like in the very beginning, were you thinking, you know, oh, this was really temporary. Was there ever a time where you thought Leah was just being a wimp? I mean, I can, I just, I, I appreciate how frank you are. [00:08:48] Tim & Leah: Well, early in the process, and I mean pretty early in the process, about the time of that mulch stuff, let's say. Where Leah is still doing more than normal people do, but a lot less than what Leah used to do. And yes, there was a short period of time in there where the thought was... Just do it. I never really thought Leah was faking. It was more of... I'm not even exaggerating. Yeah, it was more a matter of, just do it. Because I know what Leah can do, which is just... Anything. And it was like, just do it. Yes, I know it's hard. Just do it. It was a while before I had the realization of this isn't hard. This is impossible. But here's the thing, like I said, I know what Leah wants to do. I know how much Leah wants to take care of the family. And so moving mulch, no one wants to do. But things like educating the children, cleaning the house, cooking. It was like, when she couldn't do those things, I would have flashes in my head of, Come on, if she wanted to, she could do it. Because of the respect that Leah has earned over a quarter of a century, It's like, as soon as I had that thought, it was immediately contradicted with No, you know if Leah could do these things, Leah would do those things. And to his credit, not once did those words ever come out of his mouth. His face showed it, for a flash, because he has no poker face, but to his credit, he never uttered those words. It was just this look of, like, are you kidding me? And that's it. It's like, that's it. Are you kidding me? It's just... Whatever. You know, this tiny little thing. Vacuum this or wash this or whatever. It's like, come on, just do it. We were prepping for vacation and we still, until last year, we're able to eke out tiny little bits of vacation, but it was like Leah way underprepared for one of the trips that we did. And that's not, again, not Leah, you know? And it's like, look, you need to do this, this, this for us to be able to take this trip, just get it done. But she couldn't, she can't, you know, and so yeah, there were flashes of Just do it. And it was like no, she would have already if she could and so it was me Approaching it from that standpoint, which was not let me Evaluate based on what I think she can do. But I have the respect for her to be able to say I know if she can do it She would do it. So you look at that from the exact opposite way, which now is evaluate where she is based on where she can do. And that's terrifying because it's not, it is, because it's not, it's not, if she just wanted to, she'd do it. You start looking at this going, she can't do this. So how bad must this be that she can't even do these little tasks that are necessary for the running of the family? So. It was fairly early. I mean, this is probably a year and a half into the process. Because for the first year and a half in the process, none of the things that she couldn't do were really impacting the family. They were extras. Yeah, the house wasn't as clean, the food wasn't as nicely prepared, but we had everything that we needed, etc, etc. So, you don't bother to evaluate when your needs are being met. But once you get to the point where, okay, this isn't getting done, this isn't working the way that it needs to. That's when you start evaluating and going, How bad is this? Not, does she want to do better? But, how bad is this? And like I said, the answer was terrifying. It's like, this is really bad. What do we do about this? He adjusted to that far more quickly, mentally, than I did. Despite the fact that it was difficult for him, he made that switch to, This is the new normal. We cannot compare things to how they've been. This is now, and here's how we can move forward. It took me most of a year longer than it took him to accept that. So it helps. I'm an emotionless automaton. We, the joke is I'm a pod. If you know the Seinfeld reference, you're a pod. So I'm a computer consultant. I'm highly technical. I'm technically oriented. I'm analytically minded, et cetera. And so that's why I was saying like, like looking at the situation, I'm able to analytically go, okay, look at this. This is how this situation is. And moaning and whining, et cetera. I mean, I won't say that I haven't done it, but it's like, it doesn't do any good. You know, whatever task you were whining and moaning about still is undone. So we might as well figure out some way of moving forward, you know? And that's what it was. Lee and I have talked about this for our family. What it is, is what resources do we have? What tasks need to be done? And you just line up the resources, you line up the tasks, you prioritize them as best you can, and you get what can be done. What needs to be done is irrelevant. There's a scene in Apollo 13 where the guy keeps saying, I need this, I need this, and the guy's like, you're telling me what you need, I'm telling you what you have. And that's what it is here. Forget what you quote unquote need, that's irrelevant. Because you can only do what you can do. You have to look at the situation, see what you can do, and then just prioritize and get the most important things done. And when you're out of resources, you're done. If there are truly things that are of Absolute necessity. Well, then you better ask for help because, you know, you can't just wish for this to get done . So like I said, I have a bit of an advantage being the emotionless automaton. That's how I tend to approach these things, you know. And what I found is of course, and I have a feeling others in my situation, even if they aren't emotionless automatons, you're going to get to the point where you have no choice. It took me 18 months to get to this point. It wasn't like as soon as Leah's Health started to degrade, I went, oh, let me step in and start an no, no, no. It was only when, okay. The needs are greater than the haves that I have to stop and ruthlessly start looking at this and it's gotta have been a year, at least a year that we've been doing that. I mean, Probably even before. Probably the last time we went to Florida, so probably about a year and a half. Yeah, I would say two, yeah, absolutely. And that was it, that trip I mentioned that Leah way underprepared for. It was like, okay. She does not have the ability to do this anymore. Cause normally a trip, I don't do anything for preparing for a trip. I prepare my scuba stuff. I might prepare the clothes I need on a daily basis. Leah's got everything else. Planning the trip is my jam, but then I couldn't do it anymore. Exactly. And I looked at that and went, oh. And it was, and so that is like, and now it's, it's, it's ruthless. What can you do today? Okay. This is what you're going to do no more. And I got the rest. That's all there is to it. Or you come in and say, you can't do that today. Stop. I have to say that a lot. I have to say that a lot. Yeah. But I still want to get things done. Because that's what I do. But you can't anymore. [00:15:32] Jill Brook: So here's what's striking me. First of all, I love you guys. You are so wonderful and amazing and I love seeing you there in sync and you have the same energy and you got each other's backs. And You're such a team, and you make it look effortless. [00:15:50] Tim & Leah: Well, you asked what attracted me to Leah. That was exactly it. She was the type of person that I knew was going to have my back and for 28 years she has not disappointed. [00:15:59] Jill Brook: Aww. So, this was a lot of change to navigate, and a lot of, I'm sure, disappointment, and pain, and expectations, and, I guess, it seems like a lot of couples would have so much struggle making it from point A to point B, as you guys did in that couple of years. Do you have any advice, any insights? Or did it just come naturally to you guys? [00:16:29] Tim & Leah: For the most part, I would say it came naturally. We have focused on being a team from day one. And we've had a lot of struggles in the past. You know, like, like family things and different things like that. And Leigh and I communicate very, very well. And we talk a lot. Way more than any two married people I've ever met. We talk so much. And we always are planning and making sure we're on the same side. And all that kind of good stuff. To me though, you mentioned disappointments. And they're definitely there. Again, I get over disappointments easy, but they were there. That trip to Florida was, it was a tough one. Other trips where it's like, I want her to come, she can't, you know, that type of thing. And, there were disappointments where it's like, I want to do this. We cannot do this, you know, the kind of thing. And I think the fact that we have always been such a tight team made that disappointment more intense because we are our favorite person to hang out with. A lot of the fun of, I mean, I love scuba diving, but I can't, I don't scuba dive 24 hours a day when I'm on a trip. It's like the rest of the time I like having Leah and the family too, but especially Leah there. So there are disappointments, but honestly, this is where if you're not an emotionless automaton, you're going to have to tap into that. You're going to have to look at the situation objectively. You just objectively look at the situation and go, this person's not doing this to you. They no doubt would like to be there too. And yes, you may be wildly disappointed. Remember, they're wildly disappointed too. It's easy for me to say, but I think a lot of people overly are just too selfish, self centered. It's like, they're not doing this to spite you. And by the way, I don't want to make it seem like this is a one time conversation, even for me. You constantly, constantly remind yourself of this. I'm disappointed. Stop. Two things. One, you're allowed to be disappointed. Certainly. That's a situation that's disappointing. But in the same breath, two, the person is not doing this to you. You're not being, like, unfairly selected here. This is the way it is. And you don't have a choice. You're going to need to, you know, Tighten your back, pull up your pants, move forward. And that doesn't mean that you can't have the emotion of, I'm sad. Certainly. This is a very sad situation. Leah's life, in many ways, is, you know, A tiny fraction of what it was. I do this with Leah all the time. You know, Leah, you have the right to be sad. This is miserable. This is not fair. This is unjust. You have every right to be sad about this. However, That and a quarter won't get you a phone call. We're also going to have to take the next step and say, what can you do? What can we do with the situation that we have? So both can be true. So that's true of our relationship and how we've handled it too. You know, you have a right to be frustrated. You have a right to be mad. You have a right to be disappointed. You have a right to be angry. You have a right to be all of those things. However, very few of those things are actually going to move anything forward productively. So, while acknowledging your right to do all of that, I suggest that you also try to refocus these things into something that's actually going to bring about benefits and productivity. Not just productivity from like an accounting, you know, what... gets done in the family, but what's going to make the relationship between the two of you better? What's going to make the way you handle the children and all this other things. That's great. Okay. So if you've ever watched The Amazing Race or, or things like this, it's important that it's The Amazing Race because it's two people put into these stressful situations, ridiculous stuff. People make mistakes and bad things happen. And Leah and I have watched this show and we watch this, we have a rule. We've always analyzed heavily what we would do if we were on this show. And one of them is, when something goes wrong, you have two minutes, TWO MINUTES, to rant and rave and rail and say how stupid all of this is and how big a mistake that was. Two minutes. We've talked about it. We originally said five minutes, but no. I didn't know that's too much. Five minutes is too long. You have two minutes. And then after two minutes, you stop. And you work the problem and you move forward. And this is our amazing race and this is literally, yes it is. This is our amazing race. It absolutely, absolutely. This is how we approach day-to-day life with this illness as a family. When one of us is having that emotional breakdown state, okay, it might be more than two minutes with an emotional breakdown because, you know, that takes time. A big one, correct, exactly. But it's okay, we're going to address this together, we're going to feel all the feelings that are uncomfortable, and then we're going to take a deep breath and we're going to move on together. Right. And that's it, you know, and then so there's another thing we mentioned the 250 mile bike ride I'm not gonna tell a whole story because it's long, but the long story is Leah had to use the bathroom and she couldn't and all the rest of us had been using the woods because It's a long bike ride and Leah would not And the bathrooms got moved and all this kind of stuff. And she kept whining about it. And I said, look, I tried like being the polite and kind and loving husband and all this kind of stuff for miles and miles. This was the last day of the ride. And she's still whining. I'm like, look, you have two choices. Go in the woods. Or wait till we get to the bathroom. But what I said was, you have two choices. Both involve shutting up. Because there's nothing I can do! I can't make a bathroom materialize! And I was so mad, and I'm looking at him, and in my head I'm thinking, No! He's right! And so, that's the only time I ever said that you have two choices, both of which involve shutting up. But we use you have two choices all the time. Because most of life boils down to you got two options. Pick one and don't look back. Because the problem wasn't that she didn't know what her options were. It wasn't that she thought there was something that would change the options. It was merely she didn't like the options, but I can't change that. So that's another one that we use an awful lot. You have two choices, and it doesn't come out a lot, but, but it does. No, but when it does, it is the completely right frame of mind to be in, because it's always in some situation that is difficult and challenging, and you don't like the options. Well, guess what? That's what a lot of life is right now, so we make the choice and we move on. [00:22:42] Jill Brook: I love it. I love it. Don't waste the mental energy getting hung up. [00:22:47] Tim & Leah: Because I can't make a new option. And whining about the options, do not change the options. And it goes for him too. It goes for all of us. It goes for all of us. And it's not like, again, like the amazing race thing, you get two minutes. It's not like as soon as somebody starts whining, you throw that out there. They get a couple of minutes, let them whine. But after they loop on it a couple of times, it's like, okay, great. You have two options. Both of which involve shutting up, you know. I swear, we do love each other. We do. [00:23:13] Jill Brook: I love that. That's genius. Okay. I have more questions, but if you have anything to keep saying, I love what you say. So just keep talking. If there's anything else you feel like saying. [00:23:23] Tim & Leah: You're now his favorite person. We would never stop talking. Just like any of these times where we pause, it's not that we have to pause. It's that we're merely pausing to allow you an opportunity to take control of your show. So, yeah, by all means. We'll stop now. Okay, [00:23:38] Jill Brook: Okay. So a minute ago, you had mentioned that at some point you have to accept your situation and think about how you can be productive or as happy as possible going forward. Do you have any examples or memory of choices you made that sort of involved a new way of living going forward to make the best of your situation? and what does that look like? [00:24:04] Tim & Leah: I don't know if this is an exact answer but the biggest one that required the most amount of oh, and this is a big change, and I'm gonna have to do it. Took, took months, is Leah cooking. Yeah, meals. Yeah, so again, very 1950s relationship. For a period of time, I did cook meals because I wanted to, not because I had to. And when you cook meals because you want to, there's a very different mindset in, in a few ways. One, you tend to take... a fair amount of time. It's something you're doing for recreation. Two, if something happens and you can't do it, you don't do it. But when you have to cook meals for the family, there is no, I'm not going to do it today, because then people don't eat. And the other one is, you may not have two, three hours to put into this . And even today, so I've been doing this for A year cooking? I believe it's been a year. Somewhere in that neighborhood? Yeah, last summer. Something like that. So even now, I still... resent it and do as little of it as I humanly possibly can to the point where I know that this costs Leah energy and I still make her do it anyway, she plans the meals. So I'm going to validate, I hope, a lot of wives out there that may feel this way, because I know I've validated what Leah has been saying for a quarter of a century. This is an impossible job of paper cuts. You know, it's like, not only do I have to cook the food, I have to figure out what to cook, I have to prepare the space to be able to do the cooking, I have to manage other things while this is going on, etc, etc, etc. Now that I'm mom in the family, I say, because people talk about how hard the mom's job is, and I, I anger moms with this one. I say mom's jobs are not hard at all. There is not a single task that I have had to take over that's difficult. Not one of them. Not one of them. It's the fact that there are so many of them. They never stop and you cannot schedule them. That's what makes this job impossible. You know, it's like, while I'm cooking food doesn't mean the children don't have to be taken care of. While I'm taking care of something else doesn't mean, you know, and it's like cooking has to happen. Every single day. So back to what I was saying, I have Leah plan what I'm going to cook. So at least I don't have to waste the brain cells, the energy for, for doing that. I just look in the calendar, but the problem is I still haven't fully switched over. And so there'll be times where all of a sudden my phone goes ding, because it's, it's on an electronic calendar on my phone. 3. 30 or something like that. The phone goes ding with dinner for today, and I'm like, oh, no. Because I'm elbows deep into something. And I have completely forgotten about the fact that everybody expects to eat in a little bit. So I stop everything. And there are so many layers to it. So, again, Leah loves cooking. Leah loves managing the house. Leah loves taking care of the family. Yeah, she can't. And so I had to, and it was not planned, we didn't have a conversation, it was one of those day after day after day, it was 3. 30 and Leah can't get food on the table, or she could but it's just gonna, like, destroy her, so I would step in and do something, and eventually it's like I now have to have this assignment. And as much as he didn't want it, he was having to pull it out of my hands because I was holding on for dear life to this task that I've always enjoyed. Right. So it's difficult on, on like... Both angles. It was difficult. Have to take it over when he doesn't even wanna do it in the first place. It was difficult mentally. Yeah, it was for all of us. It was difficult. Emotionally, I resent it. Leah loves it. It was difficult because it was Leah's kitchen, not mine. But after three months of trying to find things in the fridge, I threw a hissy fit and said that's it. Okay. And I'm rearranging the refrigerator. Can we go back to the easy fit? Sure. Don't ask because that was hilarious. So any other pots spouses out there who are perhaps beating themselves up, know that you're in good company? He was having a tirade downstairs in the kitchen, it turns out, yelling at the refrigerator. Because the refrigerator was set up for my workflow. It was stupid. The way my brain works. It was stupid. It was amazing. There was no logic to it whatsoever. You couldn't find anything. Things were behind things. Nothing was organized by any thing that I could find. And, again, analytical, et cetera, et cetera. I'm looking at the fridge, and it just, it's in the fridge or the freezer. All of these things. And I'd be going through them, finding food that was going bad, cause... You know, it had been months since I managed the refrigerator. And so just top to bottom, I reorganized the refrigerator and the freezer. We have two freezers, I reorganized them. And now I can find everything. I know exactly where it is. But that was a real big, this is no longer Leah's kitchen, because I would never have done that because it's Leah's fridge. And you think I didn't know it was illogical before? I just didn't care, because it wasn't mine. Well, now it's mine. I have to be the one responsible for everything that's inside of it. And so, yeah, there's a lot of emotions involved in all of that, for both Leah and I, you know? It was probably one of the roughest transitions in this entire thing. The food, absolutely. With the food, yeah. Absolutely. Taking care of the kids has been tough, too. But I was telling Leah, I've always taken care of the kids. Just a little, but I've always taken care of the kids. Whereas food, I didn't at all. And so this is one of those, okay, life as we know it is over because I have gone from, I want nothing to do with this, to I am the primary one responsible for this. And that was an extremely tough transition. And so you were asking about, you know, like what you would have for suggestions. All I can say is that you were talking about, you know, when you have to really grab yourself and analytically say, this is how it is. I would say cooking was definitely one of those things. Taking care of the house. The kids are much more involved with that. My daughter does all of the dishes. My son cleans all of the bathrooms cleans a couple of other rooms, that kind of thing. For my son, every day a different room of the house he's responsible for cleaning. Every day, my daughter's responsible for cleaning the kitchen. That was a tough transition for them. It took them, this is not an exaggeration, between 8 and 12 weeks before they went from being asked to do these things to where Most of the time, mostly done. Correct. Exactly. And so you've got to be patient. And we've noticed that with other large transitions, you're literally three months. That's what you should have in your head is three months. Don't think less. And the problem is, especially adults with children, it's worse. You think the transition is going to take you less as an adult. It's not. You just think it is. And that, but you, you put that on the children and you think that they should be able to do it faster. They can't. You've got to give them that full three months. Doesn't mean you're not consistently trying to tell them this is what's required of you. You're not consistently trying to establish what the standards are and how everybody's going to live with them. And you're not telling them. You know, this is not good enough. I need you to do more, but you've got to be patient. And I'm terrible with that. You got to have in your head three months. We're going to push through this. We're going to get through this. It's going to take a while, but we're going to get it done. And that's been true over and over and over and having unrealistic timeframes. And this is where you can give yourself permission to be upset. Yes. I wish it were done faster. Yes. I wish this were being done properly and this and that and this and that, but this is where you give yourself two minutes and then you move on. I think another thing for people to keep in mind is the toll that the emotional upheaval of an illness within the family, the toll that that takes in your just physical energy, the healthy family members, the emotions take such a physical toll on the spouse and children. I feel like everyone needs to be reminded that they need comfort and time to rest and acknowledgement of what they're going through because they give so much all the time. [00:31:35] Jill Brook: That's great. That's great. Do you have any other advice around involving the kids around these changes? Like, how did you bring it up with them? [00:31:44] Tim & Leah: Family meeting. Yeah, we try to be as proactive as possible. Both Leah and I, when we look back at our upbringing, we saw a lot of areas where if our parents had communicated with us more of what was going on. We both have parents that had cancer when we were teenagers. And it's like... There's a lot of area of worry where parents don't communicate. And this is kind of a cliche that the kids are always going to imagine that things are, are worse. And I can speak for myself. I didn't go around thinking that my parents were trying to hide stuff like that from me. Oh, Oh, Oh. Yes, and where parents acknowledge that they're wrong. This is something that's huge for Leah and I. Huge for Leah and I. Because we both had parents where when our parents made mistakes, they would kind of sweep them under the rug to an extent. Leah and I are just the opposite. We go out of our way when we are wrong to tell the child, No, we were wrong. Either because we overreacted to something or because we literally just like misunderstood the situation. Like, no, no, no. We were wrong. And so we move that forward with the POTS stuff. That's it. It's like trying to communicate with the children specifically what's going on. You know, this is what our life is going to look like now. You know, this is what mom can do. This is what we can't do. Because the other thing is we need a lot of cooperation from them. You need buy in. The whole family has to buy into what's happening. Yeah. For it to move forward. And so, like, Our children are homeschooled, so they're home a lot. They probably had more around the home tasks maybe than like a public school child, but they didn't have eight, nine hours a day away from the house either. They had so much time to do this kind of stuff. Our children, on an absolute scale, had so much more free time and Play and this type of stuff than any other child would because of that. So when it came to, okay guys You have real responsibilities around the house and they absolutely need to be done. That was a huge change for them That's why I mentioned the 8 to 12 weeks, you know, it was literally months To get them to do the tasks. Plus, my son has ADHD with inattentivity, which means he's not hyperactive. When he gets overwhelmed, he freezes, the inattentivity, he freezes. We had him doing the dishes first, it took him three hours, and the kitchen wouldn't be done. It was ridiculous, you know, so it was finding out which tasks, which child was best suited for. How best to schedule things. Mornings, afternoons, evenings before bed. You know, there's so many of these things and you can't dictate, you can't make them happen. The only way you're going to be able to do this is as collaboratively as possible with everybody and try to pay attention. You know, my daughter, overworks herself. She does my son's tasks voluntarily, and we're having to tell her, Inara, Tyler needs to do these things. He needs to be in a schedule of doing them, he needs to get used to doing them, he just needs to have the responsibility of doing them, and you need to stop trying to make the situation better by working harder. Because that's her. He's trying to make our family life Better, and somehow my health better by working as hard as she can. Which is how Leah always has been, you know. Which is why I'm in the situation I'm in, I do believe. Just the mental health aspect. And the way it wears down on your health causing things like chronic illness. And so, that's something I specifically try to talk to both kids about. Listen, we're harping on this because yes, we need your help, but your mental and emotional health is far more important than a load of dishes. let's work on this together. Right. Both the children and our oldest, she's 25, but all three of our children have suffered from anxiety. So managing their anxiety has always been an issue. Tyler with the ADD it's just that we've got a lot of, a lot, a lot, a lot, a lot of those kinds of things. And you know, You have to be patient, and I'm terrible with patience, by far my worst quality. this is where the analytics for me can kind of help, you just analytically look at this and go, it's unreasonable, the level of expectation that you're having, you've got to be very aware of that, watch people and pay attention. And Leah's great about that, because she's great at responding to people emotionally, and she's like, look, you know, this person needs this emotional care today, and you've got to relax, and you know, that kind of thing, so, There's no magic bullet. It's every day, every hour, hour by hour, literally, literally evaluating the situation. Okay, and I go back to what I said. Here are the resources we have. Here's what needs to be done. It's three o'clock in the afternoon. Dinner's not done. And none of the cleaning has been done in this and this. Well, I need a clean kitchen, at least halfway clean before I can do the thing. Anara, I need you to clean the kitchen. You know, the bathroom hasn't been cleaned. Tyler, I need you to go clean the bathroom. And then I need to pull the stuff together for dinner. That's it. That's all we're doing. That's it. Because it's the most important thing. And that's it. And I'm only looking one hour ahead. That's one of the biggest changes, I think, on a minute by minute basis within the family. Is, literally, we all poke our heads up and look at the next hour ahead. At most, you look at the day when you wake up in the morning, and then you don't, for most of the time, you don't look past that, because it's too overwhelming. And it does us no good. And the other thing is don't back off from the things that you plan. There are times in the morning you say, Okay, Leah, you're going to do this and this and this today. And she's having a good day. So she gets those things done. She's got more resources, whatever. It's like, but that's it. You determined that early. That's it. Maybe she can't do as much. You may have to pull things off. But it's a day where she can do more. Don't push it. That's it. This is what you came up with. This is what she's doing. Let her recharge maybe it's a day where she goes outside today, you know, where she wouldn't have before, something like that and that's it. [00:37:14] Jill Brook: This is great. I mean, what I'm hearing is that you guys have this beautiful teamwork ethic and you use some trial and error. You figure out what works for people and then you bake it into a routine and you just keep... Fine tuning. [00:37:29] Tim & Leah: Every day. Who can do what is really what it comes down to, because we've got assigned tasks and we've all got responsibilities, but at any given day, that doesn't mean that everybody's going to have what they need to get what needs done. And it's the same thing. Yeah, nobody's 100 percent every day. Right. Forget what you need. You've got to start with what you've got and you can only do as much as what you've got. Go from there. Leah's like that with schooling. So through all of this. Leah's still homeschooling, which is four hours of intense mental stuff every day. And every day she wakes up worrying, is today the last day I'm going to be able to do this? Is today the first day where I'm not going to be able to do this on an ongoing basis? You know what I mean? And it's like, again, it's, you don't look at what needs to be done. You just look at what you've got and do what you can and we'll evaluate from there, you know, and that's what we do. [00:38:19] Jill Brook: Talk to me about what you guys do now for enjoyment and togetherness, and in the past you might have gone on a vacation and cycled 250 miles, or you might have gone to Florida and done some scuba diving and things, and I know things are a lot different now, but it seems like you're still so close. What kinds of things do you enjoy together? What keeps you close? [00:38:46] Tim & Leah: That is so very hard. Yeah, so very hard. Because Leah spends 23 hours and 45 minutes a day in bed. So if I'm going to spend time with her, it has to be me here in bed with her. That's it. She cannot go anywhere. And so It has to be, like, intentional. Because I can spend lots of time lying next to her in bed. But that doesn't mean I'm actually doing anything with her. I may have my phone dupe scrolling. In which case, we're not actually together. You know? So, there are TV shows that we like to watch together. That we do. Usually things that... are going to engage in a fair amount of conversation about things. Meals from time to time. And that's a really, really tough one too, because Leah eats and then pythons. She, you know, passes out, so that's why we call it pythoning. So it takes so much energy to digest my food. So, so that one's a tough one, but you know, we'll have a special meal and by special meal, I mean, we might get, you know, barbecue from a local barbecue restaurant and eat it together as a family because we can't eat dinner together anymore. I shouldn't say we can't, but we'd have to be in bed all the time, you know? Right. So it's normally me and the kids. Well and truly we really can't because I have found that the combination of people's voices eating and talking correct. And eating, I can't do it. Because it just drains so much out of me. So I need to like, eat alone and digest alone, and I can't go sit down with the family because it takes too much energy for me sitting up in the chair. So yeah, sometimes it's literally spread an extra, you know, picnic blanket on the bed and everybody come have dinner with me kind of a thing. Right, and so we don't spend a lot of time, the four of us, together as a family. So we're really fortunate to be able to homeschool. So Leah spends... Four hours a day with the kids, plus or minus, with the kids doing homeschooling. So her and the kids still get to do a lot. Me and the kids obviously get to do a lot. Just both managing the household, but every other Thursday I take them to the library, every other Wednesday I take them to the park, you know, that kind of thing. And so there's time where us out doing not chore related things. The four of us don't get together an awful lot. We kind of, again, because the homeschooling thing in and out, we're in and out a lot. We don't necessarily do a lot together as the four. But the tough one is me and Leah together as a couple. And I would say that some of the best times to me is it'll be later in the evening, kids are going to bed, and if I'm having a day where my mind is still functioning at that time of day, which is not a given, he'll text from downstairs. Would you like company? Like, are you up for company? And then come up and either we'll watch a TV show that we hit pause on constantly because we have to discuss what's going on. Or we just sit and chat because we never have a shortage of things to talk about. And it's like, for as long as I can mentally and physically handle that, that is very rejuvenating to our relationship, and emotionally, to me, anyway. Those are the times where it's like, Oh, that felt really good. And like, I'll wake up the next morning and be like, I really enjoyed that last night. Just 45 minutes of conversation. It seems like nothing, but it is crucial. And so we don't go out of our way to schedule those kind of things, etc. We have to shut things like that down because Leah doesn't have the energy to be able to do it. And we do schedule, like meals or other things like that we do. But for us that, that's it. But we've always been like that. But as for big things, like you were talking about the going on vacation and it's impossible. So we don't. I don't know that a lot of our value, strength, et cetera, as a couple came from those kinds of things. And we also like going to Florida, so of course we spent a lot of time with each other going to Florida, you know. But if you are a family for whom those shared experiences doing something means a lot, that's a tough one. That would be very difficult. It is. And all I would say is, you know, you've got to do what it is that you guys do, even if it's in little bits. And that's the other thing, you've got to change your perspective when it comes to this. Ain't nothing happened for a long period of time ever with anything. It's not gonna be a big trip, it might be a walk around the block. If I'm having a really good day, they'll take me out in the wheelchair and walk me around the neighborhood so I can see everybody's flowers and all this kind of stuff. And we're talking lately it's been no more than five, seven minutes, that's it. Yeah, so whatever that is for, for another couple, whatever that looks like with abilities. And Interests. I just think being intentional. Yeah. Being intentional is the key to keeping yourselves together and happy and on the same page. And being intentional means two things. One, scheduling it or whatever it takes to do it. Doing it intentionally. But while you're doing it, maximize the value of whatever you're doing. Be fully present. You know, and that's it. Lock your phones away. Lock the children somewhere. You know, that type of thing. And that's another thing that we should probably mention. We've got a lot of friends, people in our congregation, things like this, that take the kids. And Leah has like four or five people that she's literally Ask them, you know, are you somebody that can take our kids? Yes. And we schedule them to take our kids. And actually, they've gotten to the point where they schedule to take our kids, which is absolutely wonderful. So we were originally using it when Leah was going to the doctor all the time because we needed somebody to take the kids. Well, Leah doesn't go to the doctor anymore because There's no more doctors to see at this point, sadly. But we still have them take the kids. And that's where Leah and I can do stuff. And I would say that that is what really needs to happen. You need someone to take the kids. But you got to do that. You've absolutely got to do that. And then you've got to do whatever it is that you can do the most and do it as intentionally as possible. If it's eating together that you guys really like, then do that. If it's talking together, if it's engaging in some sort of something, even if it's... A tiny shadow of what it used to be, engage in that as fully as you can, until you can't anymore, and then stop. It sounds so hard to accomplish. And if you're the one who is healthy, Yes. Do not be resentful that you can't do more. You're allowed to be disappointed, be disappointed for two minutes, and then it's time to say they're doing the best that they can, and I'll take what I can get, and just constantly remind yourself. And again, it's fortunate for me, I had 25 years of Leah doing the best that she could to take care of this family for every bit. So when there's something that she's doing anything less than the best that she can do, I have to flip that in my mind. It's not that she's doing less than the best that she can do. I have to take it as a given, an assumption. She's doing the best that she can and that I have to change my thinking and my expectation to remember. This is the best that it's going to get, and I'm going to be grateful for that, and we move forward. [00:45:34] Jill Brook: You guys are beautiful souls! And it looks like you have a beautiful relationship. I'm so sorry for the situation that you find yourselves in, but at one level you have everything anybody ever wants in a relationship, somebody who gets you and cares for you and believes you and has your back and wants to be with you and is excited to you talk with you whenever they can. And in some ways I feel like I'm looking at the most beautiful thing ever, even though it's under the toughest of circumstances. [00:46:08] Tim & Leah: That's when the most beautiful things tend to come up, isn't it? [00:46:11] Jill Brook: Yeah. Yeah. Okay. Well, I love talking to you guys. We've gone a little over. Is there anything else you want to say to people out there in your situation or anything at all? [00:46:26] Tim & Leah: I don't have any deep, you know, fundamental truths to outline and I don't, I don't know that there is a fundamental truth that makes this better. It's... Like we said, hour by hour, it's constantly reminding yourself of these things. And why can Leah and I sit here and tell you of all the things that we constantly remind ourselves? Because we do. It's not something you do and then you're done with that. It's every single day, multiple times a day, reminding yourself. Nope. That's not what our family is like anymore. Nope. This isn't what our expectations are. These are our expectations. And look for the humor in the midst of all the hard. Because if you're laughing together on a daily basis, everything is easier to deal with. And look for the baddest, I mean this, cliches, but fine. Look for the best even in the bad situations. Leah can do so very little, but when she does a very small something for the family. It needs to be valued, because there's a thing in the Bible that many people know, the widow's mite, you know, all these people putting in all these, these fine sacrifices, or contributions, and this woman puts in two coins of no value, and Jesus says, she gave more than everybody else. It's a cliche for a reason, you, you have to do that. Every once in a while Leah folds laundry, and it's like, yes, that's something she's doing to take care of the family, you have to appreciate it. And then the flip side, I make dinner. They're terrible dinners. They're stereotypical 1960s housewife, one step above microwave dinners, but food is on the table, you know, and Leah will say that. I appreciate that you have made this. You've got to do that. And if you're constantly focusing on what you had before or what you don't, you miss, it's miserable. You've got to focus on what you've got and what. You've been able to do it and know that that's the best and we're going to have to value that because that was the best. [00:48:36] Jill Brook: Beautiful, smart, inspiring. You guys, Tim, Leah, thank you so much for speaking with us today. Your insights, your stories are just... You know, I think so good for us to hear. I think you're amazing role models and I know everybody listening is wishing you all the best going forward. [00:49:01] Tim & Leah: Thank you very much. [00:49:02] Jill Brook: Okay listeners, we'll be back next week. Till then, thank you for listening. Remember you're not alone and please join us again soon.