Ardra Shephard: I'm Ardra Shephard and this is Tripping on Air. A place to talk shit about what it's like to have MS. Normally, I like to make everything about me, but MS also affects the people we love. So weighing in from the partner perspective is Alex Hajjar, my friend, whose wife also has MS. Join us monthly as we dish about everything from symptoms to stigma. If you have MS or you love someone who does, we want to connect with you. What gets me up in the morning is almost always my bladder followed by my need for coffee. If I sleep late, it's the dog who climbs into the bed and tries to nudge me towards consciousness. But it's having a sense of purpose that gets me excited to start the day. Purpose means something different for everyone. Purpose can come from passions, hobbies, relationships, personal values, spirituality, as well as the work we do. A sense of purpose is critical to our sense of, well-being. And we're talking about purpose today because MS can sometimes get in the way. I would even argue that the erosion of purpose can be one of the more devastating invisible symptoms of MS. I want to share the strategies that have worked for me when MS has forced me to reinvent. So think of this episode like a mini workshop. Grab a pen and paper, maybe get a snack, hit pause if you need to, we're going to figure this out together. Alex, has there ever been a time in your life when you felt like your sense of purpose was threatened? Alex Hajjar: Yeah, this is getting heavy right away. I think the first time I felt it was probably after 9/11 when I went from essentially being the average high school student with a year-round tan to a threat to humanity. And I feel like it is something that has limited me and more so people that look like me ultimately. But also when I agreed to leave England and then in France when the doctors told us that Nicole, "Might," have MS. I had always wanted to live in Europe and I was doing it and agreeing to leave felt like admitting defeat a bit despite being quite successful there, if I say so myself. And learning that MS might be our new roommate was something that scared me just based on ignorance, truthfully, but historical and limited knowledge of it. While all those things were shit, both of us have come out alive and relatively well and successful. Ardra Shephard: Those are pretty big openers for sure. But it's true, MS or not, we all face multiple upheavals in our life that can cause us to ask a lot of questions. I want to jump back to maybe a happier day, which was when we shot some get to know you content this summer for the pod and the first question you were asked was to tell us about yourself. Do you remember what you said? Alex Hajjar: Yeah, I think I said something like, "I play music. I work on two podcasts. I'm learning a couple languages. I read a lot. I have some nephews and I do engineering as a way to pay the bills, in my spare time." I think specifically, that's what I said. Ardra Shephard: I got so excited when you gave this answer because you put work last. And I think that that's not the inclination of the North American culture. Maybe that was part of the appeal to you of living and working in Europe is that here so often purpose is tied to work or productivity. And it's certainly okay to find purpose in work, but it's dangerous to confuse or conflate productivity with personal worth. And the reality of MS is that work might change, it might even change if you can work. And so we need to protect ourselves from the assault that that can have on our sense of purpose by finding purpose in multiple places, so more than just work. And I love that you put that almost as an afterthought. If you had to pick one primary identity or sense of purpose, what would you say? Alex Hajjar: Yeah, I usually tell people, especially when I go on vacation, I really like things like mountains and oceans and things like that and being near them because I'd like to be a part of something that's bigger than me. And maybe that sounds a bit cheesy, but whether that's making music or podcasts or being a part of a union or advocating for people without a voice or just cooking and serving a meal to friends. I think community and company are things that I just aspire towards. Our whole society is geared towards individuality in my mind, but I've always found that the time we spend with others is usually the most vividly remembered and warmest. Ardra Shephard: Dude, I asked you to pick one and you gave me 15, which is also the right answer because, I mean, it is important to put your eggs in more than one basket, right? Okay. Here's where I want our audience to make a list. And the first list you're going to make is all of the roles you play, all of the hats you wear. So friend, neighbor, niece, cat mom, book club, the group chat, nothing is too small. Brainstorm, make that list. Alex, do you have any secret identities that you want to share? I mean, I feel like you shared a lot already, but- Alex Hajjar: Yeah. Ardra Shephard: What would you add to this? Alex Hajjar: That's what you get when you put me in a situation to talk, so I would just give you many things. But yeah, I'm a cat dad, which I think I've talked about. I used to turn wood before I moved into a tiny apartment. I like to garden. There's one of my plants in the apartment as well. But I think your life is often on display, whether it's Facebook or Instagram or your blog or any of the other multitude of things that you do. But do you have any secret identities? Ardra Shephard: I would say that my MS life is on display, but maybe not all of it. Maybe it's not a secret, but two identities that I would add to this list because we're talking about things that aren't maybe as obvious or unconventional. I would say I'm a party planner. If you are having a milestone birthday or a baby or a wedding, I love to throw a shower, I love to throw a party. I am a party planner and I will throw you a really good party. And the other identity that I would say is I am the family archivist, which is a fancy term for scrapbooker maybe. I don't know if anyone... I used to do the tactile scrapbooks and now I do the photo albums. But that is an important role, I would argue. I don't even need to argue, it's just a fact. It is something that really fills me up, but it's also good for my family and loved ones, documenting those memories. So if you are a fellow family archivist. Alex Hajjar: I think that is a super special thing because my parents have boxes of pictures and that just feeds on my neuroses for wanting things to be organized. So I think that's a tremendous skill to have. Ardra Shephard: You could take that on. Alex Hajjar: Okay. Maybe instead of woodturning, I'll start scrapbooking pictures and stuff. Ardra Shephard: It's great. I love my old tactile scrapbooks. Used to be in a scrapbooking club. Alex Hajjar: That's cool. Ardra Shephard: And now that everything's digital, it's easier, but you can also get a lot more photos in there. But most years, either on our anniversary or New Year's, we look through all those books, Carrie and I together, and it can actually take multiple days. It's really fun. I like it. Memories, it's important to hold on to. Okay. The next list I want you to make is list all of your relationships. As above everything should go on this list. So obviously your grandmother, but also the doorman, the dog walker, the person who runs the cheese shop. Hi, Nancy. List all of those relationships that you have. Once you have that list, I want you to think about how you can make those connections deeper. So maybe it's something as simple as committing to calling your grandmother once a week or maybe it's TV-less Tuesdays where you talk or play games- Alex Hajjar: Yeah, I love that. Ardra Shephard: ... with your partner and your family. It probably seems obvious to invest in the relationships that are closest and most important. But research shows that, so-called weak ties, the loose or casual acquaintances we have also have a direct impact on happiness and wellbeing. This makes me think of my friend Farah, who did an experiment once when she was living in Toronto, she lives in Germany now. But she had decided that she was going to smile and make eye contact with everyone she encountered for a whole day. And it had a real impact on her day. And I was like, "Girl, that is impressive to do in Toronto because we don't actually make eye contact in this city." Alex Hajjar: Yeah, that's a great shout. I mean, I lived abroad for a few years and I almost never spoke to family and friends, but again, we were trying to blaze a trail. When I came back though, several family members passed away almost immediately and then friends either left on their own journeys or we just didn't click anymore. So now I try to maintain the connections I have left. I worked in my aunt's bakery for a few years when I was a kid, but lost a bit of touch along the way. But now I try to call once a month or so and I go for breakfast. And I usually try to get my cousins to come along with me. And yeah, we have a huge breakfast, my aunt still cooks everything exactly like she made it 20 years ago. And yeah, we share our Arabic language and we have lots of laughs. It's really meaningful. Ardra Shephard: Well, I also feel like you're getting a free breakfast, so that's totally a score. Alex Hajjar: That doesn't hurt, right? Yeah. Ardra Shephard: Are you the kind of guy that talks to strangers in the elevator? Will you say hi? Alex Hajjar: I feel like part of me would like to say no like I'm this hard case, but I actually do. And I will tell people they have cool shoes or cool glasses if I think they're cool. Yeah, it's just a natural thing for me. Ardra Shephard: Those things do contribute to our day. I think giving those little compliments is a great idea. We can be much more comfortable being cranky and pissy around the people we live with, the people we know well. But it's like even if you're in a bad mood, you tend to fake it a little bit in the elevator or on the street and actually it can change your mood. So maybe try that. I don't know. Alex Hajjar: I would suggest it. Get out of your box, if that's the case, and tell someone they have cool shoes. It does make for great conversation. Ardra Shephard: I want to talk about help, Alex. Do you ever hesitate to ask Nicole for help? Alex Hajjar: Not anymore. Ardra Shephard: Wow. Alex Hajjar: Not anymore. Ardra Shephard: Not anymore. Alex Hajjar: No. When we first got the diagnosis, I walked on eggshells, which I think is probably a typical reaction for a lot of partners. But no, I definitely don't anymore. And it's because of a lot of conversations about letting your person be a human being and respecting their independence. Ardra Shephard: Oh my God, please extend these conversations to my husband because he is a terrific helper, but he does not like to ask for help to his own detriment. And I don't even know that that necessarily has to do with my MS. I think he just doesn't seek help from others in general. But it's definitely true that it does feel good to be a helper. And it's also true that many people in our circles when we have MS, do recognize that we have a lot on our plate and maybe are hesitant or reluctant to ask us for help. And it's like, of course you're not going to ask me to help you move or drive you to the airport. There are things that are definitely beyond the scope of what I can help you with, but there are also a lot of things that I can help with and I don't want to be denied that role of a relationship or friendship by not being able to help. And so the list I want you to make here is of all the things that you are good at, things that you could help with. So maybe this is as simple as a phone call to somebody who needs it. Maybe it's more extensive. Maybe you can help with child care or dog walking or advice giving or I don't know, a million different things. If you need help writing an angry letter to your boss, I'm your girl. I can help you do that. And I would be more than willing to. So make that list and then when you have it, I want you to circulate it to all the people that in the existing relationships of just saying like, "Hey, here, I have a bit of time. These are days that work for me. These are things that I would like to be able to offer, feel comfortable asking me to help with." And that doesn't mean that you have to always say yes, you're still free to say no. But it could be a good conversation starter, even just to make your friends and family aware that you do want to be a part of their lives in that way. Does that make sense? Alex Hajjar: Yeah, it totally makes sense to me. I guess building on what I said before, I've also learned it's not really a good thing to assume your person cannot help, which again, might be a default reaction for some people, but they want to help in more ways than you think. And as a way, let's say, out, I'll usually say, "If you have the energy, can you sort this out?" Or, "If you have any spoons left," if you people know what spoon theory is, you can Google that, "Nacho needs to be fed." Nacho's our cat. And I found that either gets an, "Okay," and that task gets done or, "I'm exhausted," which means no or another version of that. And I can go ahead and do those things without Nicole feeling like she's being unhelpful. So even just, I think, the language you use to ask for help is important. But yeah, I think your points are very good. The list is a good idea. Ardra Shephard: Yeah. Because it's not just physical stuff. We can help with emotional things and processing things and those conversations and party planning, as I already mentioned, I'm very good at, stuff like that. Alex Hajjar: I'm just going to hashtag that. Ardra Shephard: Honestly, I don't know what is more effortful, planning out the meals for the week or doing the grocery shopping. We split those tasks and I would argue they're equally taxing. Alex Hajjar: They are. We just did that 20 minutes before we started talking, we were making a list and then I'm going to go out and do the shopping. But it's a 50/50 thing when it comes to that, which is great. Everybody feels like they're contributing to the house, I think. Ardra Shephard: Okay, Alex, there's help and then there's advice. Are you the kind of person that people come to you for advice? What's your specialty? Alex Hajjar: Yeah. I think when you're young and full of that attitude where you're like, "I know everything." I think I used to be that person where people would come air out their grievances, but wouldn't actually ask for advice and then I would just give it to them. But I actually stopped doing that because, A, people don't take it and B, they blame you when things go pear-shaped. Ardra Shephard: Wait, is pear-shaped a bad thing? I feel like pears are delicious. Alex Hajjar: I've only heard that term in a negative way, but I also think pears are delicious for the record. But yeah, I think people, for the most parts, the people that I interact with are all adults, and I think that those people come to their own conclusions and solutions in their own time. So yeah, I try not to give advice and if there was advice to give, my niche would actually be technical, whether it's something related to my job in engineering or planning or something like that or self-interests like computer building or woodworking. Ardra Shephard: Well, people need that information. Listen, I would be a terrible therapist because I would tell you what to do. But listen, I might change your mind here actually. There is research now that shows... And you're right, okay, giving unsolicited advice, especially if it's health advice, get out of here. But there is research that shows advice givers are more likely to act on their own advice than the people who are receiving it. There's a benefit to you in giving advice. You're more likely to follow your own advice than the person who's listening, who you already said is going to do what they're going to do anyway. But maybe it's not as black and white as just plain advice. It could be being a part of a support group. Everyone here listening, presumably has MS or some kind of interest in MS or knows someone with MS. I think most people, it's not that we need specific advice from others with MS, although sometimes we do, but it's about that contributing and sharing of information and particularly if you are talking or sorting out a problem for somebody else. So many of our problems overlap and I think that you can figure out a lot of your own ways... I feel like I'm not articulating this well at all. Alex Hajjar: No, I think it's fundamentally a similar thing, I think, in the sense that given time, people will come to their own conclusions. And sometimes we need a nudge of help from our peers. So whether it's a support group or your group of friends. Yeah, I mean, to go back a bit, I mean, I might say pull back and consider the other options rather than maybe going head first into what someone is thinking of doing. But it's more of a, yeah, let's all think together, let's all come up with as many options as we see and then you can go with the best or the one you think is the best. I just don't want to be blamed for someone making a decision that doesn't do them a good thing. Ardra Shephard: No, it's not like that. We ought to be responsible for our own decisions and choices. And maybe advice is the wrong word, but I think it could be a really good exercise to make a list of all the things you consider yourself to be especially knowledgeable about. So at the top of that list, if you have MS, nobody is an expert on MS the way the person that has it is. But maybe it's knitting, maybe it's cooking, maybe it's parenting, maybe it's gardening, maybe it's your tech work stuff. Just making that list for yourself brings an awareness to you of the things that you are good at, have a little bit of expertise in, find maybe some groups where you can share that information and knowledge. Maybe think about what you would tell a friend. And I think what I'm thinking of for me right now is advice on managing MS, which I give all over the place, and I know how important physiotherapy is and I feel like if I just keep talking about it enough that I will have to heed my own advice. Alex Hajjar: That's a good point. I can definitely see how that's valid. Ardra Shephard: Alex, you and I have music in common. You play in a band, I studied classical voice at a high level, for a long time all I wanted to be was a singer. What is it about music that's appealing to you? Alex Hajjar: That's such a good question. So I've always been a daydreamer, that was every one of my report cards as a kid, "Daydreams. Can't focus." I will literally zone out of an active conversation that I'm a primary participant in. But music just, I think, creates this tunnel of focus where all of my attention and energy is in one place at one time. That's what it does for me and that's the cathartic part of it. Ardra Shephard: The reason I ask this is because I want you to make, you our audience, our listeners, our viewers, to make a list. At the top of your list, put that thing that you're passionate about, title that. So for me, singing. Now, I want you to make a list of all the components, be as specific as you can, and break it down into what it is exactly that makes you love that thing that fills you up with purpose, that gives you a sense of meaning. I did this exercise years ago when I had to give up singing and figuring out the feeling that I got while singing is what led me to realize I could get similar feelings from other activities like writing or podcasting. My existential crisis happened before OpenAI so I had to do a lot of this leg work on myself. But in preparing this episode, I found my original list and I plugged it into ChatGPT, I'm going to read it for you now because I thought it was really cool. So here's what I asked the robots. What are some jobs that would be interesting to someone who enjoys things like poetry, art, storytelling, languages, learning new skills, self-expression, connecting with others, the sound of their own voice, being the center of attention, music, quiet study, getting dressed up and parties? And the answer I got, just in moments, it gave me 11 answers. Writer was on that list. Podcaster, translator, museum curator, teacher, event planner, psychologist and PR specialist. I mean, I would be a terrible psychologist, but every option really felt viable or at least worth some consideration. It's still up to us to identify and prioritize the feelings that connect us to a sense of meaning to help figure out the next chapter. But I thought this was a really cool tool to just get some ideas that could maybe point me in another direction and fill up some of those needs that I can no longer get from singing, but I can get in another place. If you couldn't play music, Alex, what do you think could fill that void for you? Alex Hajjar: Man, that's such a cool thing actually. I think I want to do that too. Like I said before, I used to turn wood, so I think that would be my thing. I got a lathe once from my friend Rob and I just started turning pens. You can get these sets. I turned some drumsticks for my friend Mike, who's a professional drummer. So that was really cool. And espresso tampers for packing coffee into the machine and stuff. It's so bloody dangerous and technical that you're forced to focus all of your energy into the absolute blistering speed of the machine. It was terrifying, but therapeutic all at once, which I oddly found peace in. So I think that would be a thing. Ardra Shephard: I don't love this for you because I don't want you to lose a finger. Part of me is like, "Oh, could you make me a cool pencil or pen for writing?" But no, I don't want you to lose a finger. Alex Hajjar: Neither do I. So we're both in that boat. Ardra Shephard: Listen, Alex, I ran your options by AI. Alex Hajjar: Okay. What did it say? Ardra Shephard: Yeah. Here's what I asked the robots. What are some jobs or hobbies for someone who considers themselves to be a dreamer, who wants to be part of something bigger than themselves, who enjoys music and cats, but also hates mornings? Alex Hajjar: I love this. I can't wait. Ardra Shephard: Guess what? AI did not say anything about turning wood. Alex Hajjar: Okay. I'll trust it. Ardra Shephard: Yeah. Okay. AI thinks you'd actually be a great music producer or that you could work for a nonprofit. It suggested video game developer, that you could be in a band. Podcasting was on your list. Alex Hajjar: Wicked. Ardra Shephard: But yeah, my favorite suggestion was social media manager for cat related content. Alex Hajjar: Oh my God. I could totally do that. I feel like that's actually a harder job than I think it is. But if it's cat related and I could make a living off that, why not? Ardra Shephard: A whole catstagram with cat memes. That feels like fulfilling work. You would be making a lot of people happy. Alex Hajjar: I'd have to find a cat that likes me and behaves because I think my cat likes me, but he doesn't always behave. But that might be the niche, that might be the thing. Ardra Shephard: Noodle this, Alex. Alex Hajjar: I'll have to consult with AI maybe a bit more. Maybe we'll get a new catstagram coming. Ardra Shephard: I love it. I think we've generated a lot of ideas here. I want to say I, for one, am grateful for the years I got to call myself a singer, but not singing has made room for me to explore talents and interests I didn't even know I had. Perfect health is not a prerequisite to a life of meaning. Find purpose in multiple places and you will be resilient when any one source of purpose is threatened. Losing a version of ourselves before we're ready can be a painful experience that deserves to be grieved. MS can come for an identity you spent years cultivating. Give yourself time to discover new interests. Be open-minded and receptive to trying new things. It might be a surprise to discover just how many versions of yourself you have within you. Thanks for tuning in Trippers. If you enjoyed this episode, please click like and subscribe. Do you have a story of reinvention, an unexpected chapter? Leave us a note in the comments, we want to connect with you. Thanks for listening to Tripping on Air. Don't forget to visit us at trippingonair.com.