GUEST: Carl Deriso, MS Advocate

https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E11_Your_Only_is_My_Everything.mp3

We celebrate Multiple Sclerosis (MS) Awareness Month for 31-days each year; however, close to one million people in the United States are living with the effects of this chronic and debilitating disease each day, including our host and her husband. This week’s episode is a candid conversation between two fellow MS Warriors, who are also married, and there’s no topic off-the-table. Although the diagnosis is the same, everyone experiences MS in very different ways, and this week we discuss personal journeys through diagnosis, dating, marriage, pregnancy, self-help groups, advance directives, and much more. Don’t miss this special episode! #MSAwarenessMonth2021

As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability.

Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity.

Today’s show is a bit different. We’re celebrating MS Awareness Month and I’m here with my husband and fellow MS Warrior, Carl Deriso. Good morning, honey.

Good morning.

We’re celebrating MS Awareness Month, which is in March. I’m excited to have you here today. Welcome.

Thank you.

We’ve been together for a while now. We got married in August of 2020, and you and I recently did an interview for Yahoo media. One of the things that you and I really wanted to go back to was to talk about the fact that we both have experienced MS in a different way. When we met, I was at a point where I pretty much thought that everything I experienced had to do with MS. And you were at a point where you didn’t feel like most of the things that you experienced had to do with your MS.

Let’s take a listen to a little bit of this interview, an edited down version of the original interview that we did together with Yahoo media group. It definitely highlights our experiences and our journeys.

My name is Carl Deriso and I was diagnosed with MS 1996.

I’m Sarah Kirwan, and I was diagnosed with MS in 2011.

I grew up in Arizona and after several summers of the heat there, I started developing tingliness in my feet and my hands and back in 1996, MRIs were not a common thing that were done. I went through the typical spinal taps, went through all the exercises with a bunch of different doctors. Finally they said, we need to send him for an MRI. That’s when I was originally diagnosed with lesions on the spine.

But you also had another issue.

Yeah, actually I didn’t get very much treatment at all. From that time I just kinda got used to my symptoms. In 2006, I had a flare or a, an exacerbation of my symptoms and had some blurred vision. I went back to a neurologist and they, at that time said, yeah, it looks like you’ve had a, you’ve had an incident, so we need to get you on some medication. That’s when I started, actually using a treatment for MS.

And I, actually my initial symptom was my left ear was very full. I got off of a plane in June of 2010 and my left ear just never popped. Or opened. It was just very full. I started going through testing for a vestibular schwannoma, which is a brain tumor that sits on your optic nerve, as well as your ear canal. As they were doing that testing, they found the lesions on my brain. At that time I was actually finishing grad school, which was very stressful. I was ending a long-term relationship at the time, which was also very stressful. I was trying to find a job, after grad school. It was like this perfect storm for me, where I had all of these symptoms presenting in this time-space continuum that they needed to present in for them to diagnose me. After having that first symptom in June of 2010, I ended up finally being diagnosed in February of 2011.

I got involved right off the bat because I went to my first self-help group and I walked in and I look very able-bodied, I look very non-disabled when I walk in. So I walked into the room and I was met with a lot of people who had been diagnosed many years before. There’s a difference in medications that were available. There’s a difference in kind of your outlook on the disease at certain ages or when you’re diagnosed, when it presents. I walked in and I was told you don’t look like you have MS. From that point on a, I just started thinking, what am I supposed to look like? And if this is my space where I’m supposed to belong, I don’t feel like I belong. I need to figure out something that’s going to help me feel like I belong so that I can process this. My friend Beth, and I decided that were going to start a young person’s group, self-help group for people in their twenties, thirties, and forties. That was two months after I was diagnosed, yeah.

And I, because I had gone so long without any real symptoms, I was an individual who thought, okay, I’ve been labeled with MS, but I really don’t have things that affect me on a day to day, life. I was in a position at work where I had more flexibility with my time. I decided I was going to get involved now and rather than doing money and just kind of signing a check and send it. I wanted to get involved start kind of seeing what was out in that community. I got involved with a self-help group that was about an hour South of where we currently live now, because it was the closest local one and it was an inviting and they had a fair amount of members and it just seemed like it was a good jump into my first step of trying to get involved. That’s ultimately where we ended up meeting, because I ended up being a co-chair for this, for the self-help group. I’m not sure if you were invited up or you decided to come up?

Well, I was the director for healthcare access for Southern California in Nevada for the MS. Society. I was really looking at self-help groups and how they were operating, what kind of support we were giving in certain areas. I had requested to come up to their self-help group in Santa Barbara. Of course I walk in and I have like stilettos on and they’re like, okay, who is this? Just relax a little bit, lady.

No, when she first walked in, she definitely caught my attention and I didn’t even remember what you were wearing. It was just your energy and your smile. And, so I bought her lunch that day as were doing the presentation.

I was like yeah, you can buy me lunch. (laughing)

I chased her for like three months. She wouldn’t even give me a date for like three months. It was more difficult because she lived in LA and I was up in Santa Maria where we are now. And so that’s a three-hour commute. Even though I have more flexibility, I still had a full-time job. I was putting in 60 to probably 70 plus hours a week for me. It was a connection that I felt that I want, obviously three hour commute and we had just met and he, and, we had conversation, but I, I definitely wanted to pursue more time with her. I knew that might be difficult, but I was at a stage, 52 now. I was, 50 or 47 or so. I was, I’m at a point now where I want to, I want a companion and a life partner and she’s the perfect one.

It was a drive that just kind of kept me going. And, yeah, it, I think the turning moment for me was I was at a position I’d been at for about 17 years. When we first met, she shared with me that she had plans to go to Colorado and I came to her one day and I said, Hey, I want to go with you. I think that decision for me to kind of step away from a very routine environment that I was in, to just pick up and go to another state with her was really the driving moment for me. So…

Yeah. I would say that we complement each other very well. I was at a place where I was just kind of done dating, in 2010 when I ended that relationship. I was diagnosed, I think I went into a period of what I call serial dating. It was, it was very difficult because, gosh, it’s like, when do you disclose, how do you disclose, especially when you look like I look and there’s a lot of internalized ableism that comes with, feeling not worthy to be able to express, like I have a disability it’s invisible, but these are what, this is what I experience each day. My reactions from people at first, I didn’t share it because I didn’t really have to, it would be, we would talk in group, do you wait until the third date? Do you wait until the fourth date? Do you disclose on the first date? So I decided, because I’m a data girl, I decided let’s just test the different theories. (laughing)

I tried to wait until like two or three dates in and it would be, I had one gentleman say to me, that’s just really not something I can take on, but I want you to know that I’ll be cheering for you from a far. Just like, I was like, I don’t know. I don’t understand that, but okay, thank you. Like, I don’t need your mess here. You know, that would happen. I would get to a point where I would just say it right away. I’ll just be like, let’s just lay it out there because I really don’t want to go through two or three dates. I would lay it out there and then I would find that people really wanted to now men wanted to take care of me. I also didn’t need someone to take care of me. I needed someone to complement what I was going through.

Carl and I have very different…Carl’s more structured, low risk. Yeah. I’m more like outside of the structure, like the loud ones. So, so we have a nice balance with that. I think that’s what really attracted me to Carl because he gave me Carl, when I’m with Carl’s my home, I’m safe, I’m supported. It’s everything that I needed that I, I didn’t know that I needed. My dating process to get to Carl was very different than your dating process, I think, to get to me. But yeah…

And I think it’s important to recognize the fact that we both have MS. We both knew that without having to really talk about it, because she disclosed at that meeting, you know? So it relieves a fair amount of anxiety about how, and when you need to approach it. I, when I was first diagnosed, I was already married with my first wife and we had already had one of our children. And so, you don’t worry about it, but years and years later when I was divorced and now I’m dating, I wouldn’t bring it up until it was somebody that I felt was, could be going in a serious direction. And then you just address it. The reactions from the very few people I shared it with in that environment, just had no knowledge. They just didn’t know what that meant. So, so what does that mean in a relationship? So for her and I, it just relieved a lot of that pressure and we kind of knew what could be and what we may have felt in the past and fatigue issues and things like that.

I do think it’s important though, to make a point that Carl and I experience our disability in very different ways. We experience our MS in very different ways. I think often times people say, well, it’d be so nice to have someone who understands, well, I think there’s two thoughts. There. There’s one where, Oh, I don’t want to date anybody with MS like me, because then who’s going to take care of me. The other thought is I really want to date someone who has a similar and shared experiences that I have because they know what I’m going through. What I think is important to say is that Carl and I experienced MS in very different ways. So my experience has been tumultuous. I have had many exacerbations. I lived in toxic mold for two years, which impacted my MS. And, and flared up all of my symptoms. I have used a wheelchair.

 I have used a cane with a seat or a walker with little seed in it when I have fatigue, so I can sit down. My experience has been different than his. So it’s not like all of a sudden, Oh, you’re going to marry someone with MS. And like, they get it. There is still, there are still though there’s growth, to understand how I experience it and to understand how he experiences it.

When we first met, I feel like Carl blamed everything physically wise on age or work stress, things like that. I was, I blame everything on MS. I’m like MS. MS. MS. It’s MS. Ya know? And so when we met, it was really nice to get that balance of, okay, there are some things that are going on with me, I’m younger. Yes. But there are aging things that are going on with me. Carl’s learning that there are MS things that are going on with him that aren’t always aging. So it’s a good balance.

Yeah. It helps us manage our day together as well. We’ve shifted a little bit of our schedules, just because, again, just in most cases with people with MS and the fatigue comes on later in the day, we get a lot more accomplished in the morning. And if we’re off together on the same days, we really plan for, okay, we need to kind of be shutting down about three o’clock or so, just so we can have a peaceful night at least. That’s kind of helped us both because in the early on when her and I first met, just like she shared, I didn’t have an opportunity to recognize some of the things that would say, Hey, Carl, slow down. You need to take a break or maybe not be, take more rest this weekend than you might normally do, because your body’s telling you that, which I wouldn’t recognize in the past.

So it’s been good. I try to head off what could be downtime for her, in the past she would, when we first met, she would go go go, and then just crash for two or three days, if not more. Now, some of that has to do with some other health issues that she’s gotten past. She does have more energy.

But, I still have to remind her, when she does have a hard day or she doesn’t feel well in the morning or eyes heard migraines, whatever it may be. I have to remind her what she’s done in the past week. I, before she gets into that, the next time I try to at least, give her some advice so she can at least get some rest because otherwise she’s down and out. She doesn’t feel well mentally, as well as physically, because she feels like she’s not doing the things that she knows she wants to do too. That’s been probably the most beneficial for us is just being able to understand how it affects each one of us differently. To just kind of make it a little easier as the day goes through.

I think the most important thing is that Carl and I talk about everything. From the time that we met, it was very much like I’m just putting it all out on the table here with you, here’s where I’m at and so everything is a conversation. If it’s, cognition issues that I may have that morning, it’s really saying, what, I’m having trouble articulating what I want to say today. Or my brain isn’t functioning. I’ve got a lot of brain fog. Could we be quiet this morning for 20 minutes or an hour? Could we add X into our day because I need some sunshine. Can we go to the beach today? I’m feeling exhausted. I have fatigue, but I also want some joy and some happiness in the day. Carl’s a very good balance for me because I am go go go crash. I’ve always been that way. Like, since I was young girl, and that’s been the most difficult thing for me with MS is that I find myself very frustrated.

It’s like a, it’s like a race horse. You’re like really want to get into the race, but you’re stuck behind this gate that no one will let you out. You know? So it’s frustrating. You have to learn how to live within this structure and the fact that Carl understands that. And, and sometimes to a point of frustration for me when I’m like, okay, all right, relax on the, I’m going to crash today. Okay. It’s such a great reminder and I’m like, yeah, you’re right. You’re right. I need to back off. It’s important that it has been super helpful.

What we’re currently doing. Because we kind of took a break. When went to Colorado, we had kind of a, this disheartening of the whole system, we were frustrated with a bunch of stuff. When we made the decision to come back to California, we decided we also made a decision that we’re going to get back involved in the community again and see what we can do to help. We found a, another MS. Group self-help group. That’s just North of us, lots smaller, group, not real, super active and stuff. And, the individuals that were running it were really ready to step down.

 It takes a toll when you’re doing these groups and you’re running these groups, I would say five to seven years of running a group is about the max you can do with your energy level. These women had been doing it for 10 plus years.

So about a year ago, we took over this MS self-help group. Of course that’s when the pandemic hit. Right now we’re doing a lot of zoom calls, just like we’re doing tonight or did this morning. But, we do it once a month and we’ve got about 30 people that we reach out to. It’s anywhere from 10 to maybe 12 people a month that tune into our zoom meetings to just connect and make sure that we’re all kind of moving forward during this time. There’s not a lot of walks going on. There’s obviously not a lot of fundraising going on. So, we’re just doing everything we can to just kind of keep helping everybody else.

I think it’s important, especially during the pandemic that, people have that support. We’re seeing a lot of our friends who are having their physical disabilities are getting worse because they’ve been at home and isolated for so long. I think it’s important for us, if we can provide that space for people to get the support that they need and a good laugh at the same time. You know, that’s always a plus.

This is the first time that we’ve worked together. The reason why there’s a hesitation, because I wanted to make sure that identified, what she brings to the table, just in her business background and what she’s been doing with her current activities. She keeps that conversation stimulated and moving forward. With her background in the industry and working for the society, she really has a lot of the backend knowledge on medications or insurance procedures. That’s been extremely helpful to others in the group, which I would never be able to bring to it. So, I, I’m kind of the class clown in the meeting. She’s more of the structure, but yet she brings a lot of energy. The two of us together, I think do a great job. It’s kind of a shame that we couldn’t do more in-person ones when we first took over. Cause I think that would have had more bite than trying to get some of the older generation to, Hey, jump on board with the new guys and jump into a zoom meeting.

I think that it’s also important to say that we took the time to sit down and walk these individuals through the process of using zoom. Carl went to someone’s house and set up zoom for them, even though they’re older people, they need to have access. They meet, we can’t just not have it for them because we don’t think there’ll be able to access it.

No. And I agree with that. I think my point being that if I think they had more one-on-one engagement with us, I think that more people would be excited about trying new technology is really my only point there. And, but she’s right. We’ve got to continue to reach out. I know the MS focus group has reached out to everybody that had a self-help meeting and asking, are they still doing it? How are they doing it? Because their message is the same. As we’re saying, it’s important to just continue to connect with people because that’s the only way they can continue to see what might be ahead of them.

People are alone right now at home.

I’m usually the one that’s like, I have this going on. I think this week I was like, I’m super angry about bed. They’re like, how do you guys feel about vaccines? I was like, okay, don’t even get me started on vaccines. So, it’s just a good play on each other because we’re all go really deep theoretically and looking at policies and regulations impacting disability, Carl, be like, okay, let’s go back up to here. Cause we’re just giving support right now. So it’s good. It’s good. At first I was very nervous to be in a group with him. Well, especially to run it, not to be in it because our communication, like he would already know everything before I would share it, but to run it. Cause I was like, how is that going to work? Because well, like the other day Carl was like, I was very unengaged because I was exhausted.

I had fatigue. I had brain fog. Like I just was not, I did not, I could not function through the meeting. Carl was like, Oh my gosh, it was so rough because like you didn’t engage. And I kept thinking, please engage. Is, you have to have that balance of, being able to get through some of that too. So we play off of each other well.

I come from a background where, we have a lot of monthly meetings and very start on time, end on time. Where’s your agenda. Make sure everybody has a part of the agenda. Going into the self-help group with her and I and her business background, I was afraid it was going to be too much like that. Very cut and dry, like a board meeting. And it’s not, it’s very loose. People are having a good time. We’d had a couple of new members join in, so that’s been good. She had a very successful, she was part of starting a very successful group down in LA that she had mentioned earlier. So I knew she,

It still exists. It’s still running. We handed it off to a girlfriend of ours. Dawnia Marie and she’s the founder of bright side three 65. She has built it out to include teens. That was something that when we started looking at it 10 years ago, there weren’t a lot of conversations around teens who were being diagnosed with MS. I don’t know if that’s because it was hard to diagnose. I don’t know if it was it’s because it’s, not usually the average age that people are diagnosed. Dawnia has taken this group up with these teams and all of these teens are thriving and, Beth and I pass that onto Daniela and that was Tanya’s first segue into, being a part of the MS. Society and, running a self-help group. She took that on and she has empowered other people to come behind her because like were saying, it’s exhausting when you are leading these it, and you know the power that they have and they have to, these self-help groups have to continue to exist, but how do you continue to tap into someone whose energy is spent a due to the, just in general because of MS.

I mean, people with MS. Research says that it’s five times less energy than someone who is not living with MS. It’s like, how do you respect that time? But how do you also build a system where it’s sustainable, where other people can come along behind you and feel included and feel a sense of ownership and empowerment to say, yes, I want to step in and I want to continue this work because I’ve seen the power that it holds for the people that it’s impacting.

One of the things that we have noticed and really try to make an impact on and Sarah, more so ways than that through her business and so forth. But it’s really hard to find support. If somebody was newly diagnosed with MS today, they don’t know what’s next. They don’t really know who to call. They don’t really know who to visit or what resources to tap into. They will reach out to the MS society and they’ll get the navigator information w information, which is extremely helpful, but it doesn’t really put you one-on-one with somebody in your community that wants to help you. It’s supposed to, it’s designed to, but it just doesn’t function well enough to, for her and I to get a call today saying, Hey, I was freshly diagnosed. I just don’t know what’s next, please help. So that’s the hardest part. We need to be easy to access, and that’s what we’re trying to change so that people can get involved.

It is hard because you look at, you’re working within a system that doesn’t necessarily understand what you’re experiencing. There’s a perception of what you’re experiencing and then there’s what you’re actually experiencing with the disease. The doctors, will give you, okay, here’s your next step for a medication here’s this. So the perception is that I’ve given them all the tools that they need in order to, understand this diagnosis, to process it, to get onto medication, to do what they need to do. The problem is then we get these resources and you call an 800 number. Not that is not a great resource, but I didn’t call an 800 number. I called the vice president, the director of chapter services and healthcare access, who was in my position before me, 10 years before me, I called her directly. I didn’t go through an 800 number, but I also am white.

English is my first language. I’m educated. I understand the process now for someone who’s coming into this, that doesn’t understand any of those. Like for me, it was hard enough. Think about someone else. You’re thrust into the system where you have not just one person to call and say, Hey, I hear I’m getting diagnosed. Like this is super scary. I might have to have a spinal tap. I mean, I went through, I’m originally from Iowa. I moved to LA like soon after I’d turned 24. When I was going through my diagnosis, I was alone. It cut me off from everyone. People did not understand how many doctor’s appointments I had to go to, nor did I want to tell them, nor did I want to burden people with the fact that I have to go to a rheumatoid arthritis doctor today, then I have to go to a Neuro-Psychometrist, then I have to go to, I mean, no one, people don’t understand that.

It’s too much, and it’s exhausting to keep trying to explain yourself. You almost end up isolating and backing away from relationships because all you can do at that point is survive. All you can do is what is my next step to try to get through this? I felt very alone in that process. I didn’t have family in LA. I didn’t have the structure in place that I now have in place to support me with my MS. For, for us. I think it’s so important that even if people don’t come to us through our self-help group, like we get phone calls from people, Hey, what can you talk to so-and-so has a friend who has a, a granddaughter who has a sister, like whoever that they don’t go to, the big organizations, they come to the people who have experienced it, who are talking about it.

I had a, I was having a networking meeting the other day. And, I knew that this woman lives also with a, not a parent invisible disability. I said to her, I said, would you mind sharing with me, like, what your experience with that has been, it’s not MS, but like, what has your experience with that been? And when we got off the phone, she said, I want to thank you because that’s the only time I have felt included in a conversation where someone actually asked me what my experience has been, and then say, how can I, based on your experience, what can I do to help? Here’s my experience. Like we have some shared experiences, but what can I do to help you? And so I think we forget that human connection is so huge that one-on-one connection and that’s what we’re trying to do.

So, I did not want to forget important dates. Our very first official date was August 17th of 2016. That’s when she said, okay, you can take me out. I drove down to LA and we had a very nice dinner at salt in Marina Del Ray.

Which he laughs at, because he’s like, she basically took me to the most expensive place in Marina Del Ray on our first day after the dog date, but then we actually had a real date.

Yeah. We had a meet updates at the, early airport actually. But anyway, so that’s a said. Oh, okay. Yeah, so we go down to, salt on August 17, 2016. So when I decided that I was going to propose, I thought the best day for me to do that and to the day to be engaged would be that day, August 17th. Two years later, I proposed to her. We decided that were going to get married conveniently the next year, 2019, cause August 17, 2019 was a Saturday. And that worked out perfect. Right. Perfect for me. So that’s what we had set up. And, I proposed to her at Avila Beach, which is where we ended up being married. It’s one of our favorite places on the central coast. In 2019, that year just came very quickly, too quick.

Before we go on, I just want to put it in there. There are also other things to consider. When you have MS, before you get married, many people that live with disabilities, don’t actually get married because the structure in this country doesn’t allow for them to get married, they’ll lose their benefits. If you have two people, so that was a big thing. Also I was like, Oh, I don’t want to lose my independence. I think I was very nervous. I have never been married. I had never been married and I’m 43 now. At the time I was like, Oh, I don’t know what that entails. And I have to sign something. (laughing)

I was married just once, but had been divorced for 20 years. And, so, it was exciting time for both of us and, but it just came too quickly. I was so bummed because now my, all my dates are all messed up. We ended up getting married. We decided to go the following year, which would be the same, basically the same weekend, August 8th. Here’s how I remember that. It’s the Ocho. Oh, eight Oh eight 20. It’s the ocho, easy for a sports guy to remember. And, obviously with the pandemic, we live stream that for just the few people that were there and, it was a wonderful ceremony, but yes, that’s the engagement. I was just trying to make it super easy. So the MS. Brain fog wouldn’t sink in over the years, but now I’ve kind of got myself into…

Listen, you got it. You’re fine. You’re fine.

You’re golden. Yeah. And maybe I’ll get two gifts. Cause you’ll forget.

Right

Yeah. And maybe I’ll get two gifts. Yeah. Cause you’ll forget.

Okay. We’ve been married since, August of 2020 and, life has been good. We, became empty nesters recently because, my adult children, are out of the house and doing their college and being adults it’s really the first time other than our short time we spent in Colorado together that we’ve had, really to ourselves. So it’s been very nice. We’re really enjoying the time together. We’re making the house even more and more of a home and, it’s been great. We’re really enjoying the time here in the Central Coast. And again, we want to make sure that we’re available to people that could be in the same situation that we may have been in the past.

We are really putting our roots out and really kind of getting involved in the community here with regard to MS and how we can support the community on the central coast, especially. This has been a really interesting year, too, just for growth. I mean, there’s been a lot of personal growth that we’ve gone through understanding, ableism around the pandemic, how it is impacting people with MS. The messaging is impacting people with MS. How the policies are impacting people with MS. We’ve done a lot of educating and a lot of growth as well. What the one thing I’m most grateful for is that Carl and I, regardless of what’s going on, we continue to communicate and grow together. Whether it be, spaces that are uncomfortable for us to grow in, or there’s just new things that we’re talking about. It’s always a conversation and I feel like that’s the most beautiful part about it.

I honestly, I didn’t think I would get married. When I was, after I was diagnosed, I was 32, so I made a decision that my symptoms and my fatigue were so bad. I was like, if I were going to want to have a child, I need to make that decision now. And when you’re 31 32 and you’re single and just got out of a long-term relationship. And now you’re like, Oh my gosh. If, if my fatigue is going to get worse and I’m going to get more debilitated, this and that, it kind of speeds up. Do I need to start having a family? Is that something that’s important to me? And I do feel like Carl and I have talked about that. And, and I, I don’t have any of my own children, but I made that decision because I knew I wouldn’t be able to give the time or energy needed to a child.

And is that difficult for me? Yes. Like that. I struggle with that decision, but I think that was the best decision for me and for any child. What I think is just most important is that we continue to have those conversations.

Now that we’re married. It’s easier for us to identify what our goals are and how we want to move forward. That stuff that we talked about before we got married. Whether it’s the RV that we park in some national park for a period of time,

I need an RV and a pool and a warm tub, not a hot tub, a warm tub,

Right. Exactly. The marriage has helped us kind of, okay, great. Now, now we’re ready for the next step. We actually, yesterday just completed all of our trust and will updates and all that stuff. So…

I think that’s also an important point to make is advanced directives and medical power of attorney. That is something that young people do not look. They are not thinking about medical power of attorney. You’re not thinking about an advanced directive. For me, I, I think that it’s extremely important for anyone who’s living with a neurological disease or disorder to have a medical power of attorney and an advanced directive. My biggest fear is that if my disease progresses to a point of debilitating, to me, debilitating me to a point that my vocal cords no longer work, that medical power of attorney in that advanced directive are my voice, these conversations with Carl and, my friend who is also the power medical power of attorney, they’re important. They know what my wishes are. They know what I want if my MS gets to a certain point, if there’s, if anything happens.

And so I think it’s important. We are planning and Carl and I joke around a lot because I really never adulting, to be honest with you living in LA, I felt like I was like on vacation. I came from Iowa, like, so I never really adulted. I was doing turbo tax for my taxes forever, and Carl comes into my life and now I have structure and my, yeah, it’s very adulting. Yeah. I think it’s important in any relationship for anyone, with MS in any relationship to talk about their needs as far as when we age and what that looks like.

One of the things that, I think is scary for people that might be freshly diagnosis. There are a lot of spouses and a lot of partners out there that are super supportive that haven’t been, that have never been diagnosed or don’t really know exactly what they’re feeling. But, we’ve seen a lot of that with some of the other projects we’ve worked on that we believe and so forth. We’ve seen it with, people in our own self-help group and the groups that we’ve been involved with. There is opportunity and like we’ve stressed so much about in our relationship. It’s just about the communication. If you can talk openly about what you’re feeling and how your symptoms are affecting you or what your expectations might be as a partner or spouse that will really help through some of the tough times. Yeah.

Absolutely. Yeah. That goes back to learning through your process, your own journey of MS. Learning, what it is that you need. And how do you ask for that?

There’s a lot of people in our close circle that experienced what we experienced. Do we have the benefit of that in some situations? Absolutely. However, that’s something that can grow within other individuals as well. Again, they just have to continue to talk about it, and we’ve just been fortunate enough to have that support immediately.

We have, that’s a good point. That’s a good point. Yeah, we have. I think that for some people, it takes a long time to reach out for that support. And it’s a grieving process. I think that the whole process of MS at diagnosis is a grieving process. Each time you kind of lose some of your abilities, I guess, in certain areas, it’s a grieving process. We’re constantly grieving some loss, but there is also this, I don’t exactly want to say that MS is a blessing. Although I would say that it has blessed me with so many amazing people, this amazing like support system of just people that would show up for me at any time that I ever needed. And these relationships are not surface relationships. These relationships are built on very real, very traumatic experiences that some of us go through when we are wrestling and dealing with MS.

To have that support system and also to have somebody who takes you from this kind of negativity point to, yeah, it sucks. Let’s now move here. Like we all need to recognize that. Yeah, it’s grieving and it’s sad and there’s loss. There is a lot of loss, but what have we gained in this? And I have gained more than I have lost in this process. We have to start normalizing conversations around MS. We have to normalize conversations around disability. It is not my fault. It is not Carl’s fault that we were diagnosed with this disease, nor should we have to hide it as if it’s a dirty secret that no one else can know about. We both want to empower people to use their voices, to not feel isolated and not to isolate themselves that they’re, you’re not alone. There are so many of us that have gone through it.

I have run the gamut of the not only the physical, but the mental issues and symptoms of MS in a much different way than Carl has. There are people here that can talk to you about it. It may not be a big conglomerate organization, but you can find people get online. Look for people who are talking about MS. On social media platform’s, start following their conversations, even if you’re not comfortable disclosing, but start educating yourself so that you don’t continue to internalize things about your worth. That are not true. You have value, you have worth.

Over and out. It was an incredible interview. Probably one of the very few times, we will go into that much information when it is recorded. We hope you enjoyed it. Happy MS. Awareness month. We hope everyone stays healthy and stays well.

And once again to our listeners – thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC, a California-based woman- and disability-owned small business committed to having critical conversations – at eye level – that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at: www.eyelevel.works You can also email me directly at sarah@eyelevel.works with podcast episode ideas, as well as comments and questions.

Remember to put your disability lens on when you look at the world, and tune-in next week for another stimulating conversation on Incluse This! – the podcast that’s really a movement. Take care and be well.