How do I support my loved one through Multiple Sclerosis?
On this episode, I’m introducing you to my friend Allison. Allison is literally a brilliant beauty queen and her husband Shane is truly her Prince Charming. Shane was diagnosed with Multiple Sclerosis unexpectedly and they made huge changes in their lives to keep up. Nearly 10 years later, Allison shares the impact the diagnosis and their relationships have had on their lives. We all know that the struggle with an illness or disease can potentially suck the joy out of life. But not for Allison, Shane and Multiple Sclerosis. Hear how they fight the MS blues and how you can support your loved ones too.
The transcript and resources for this episode can be found below.
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Resources and More Information about Multiple Sclerosis
Transcript
How Allison Met Shane
…Sometimes dreams are good and they actually come true!
Allison on meeting her husband
[00:00:00] Cassandra: Hey friend, it’s Cassandra, and this is needed and known the podcast where we discover how to transform average moments into a great life by learning, growing, and becoming better humans together. I interview amazing people who have improved their communication, relationships and perspectives in unique ways in each episode.
[00:00:42] Hey Alison, how are you?
[00:00:45] Allison: Good. How are you doing guys?
[00:00:48] Cassandra: [00:00:48] I am so glad that you joined us today to talk about multiple sclerosis. I wanted to talk about your journey because I, I think that your story is it’s so compelling. And it’s one of those this could never happen to me and then it does. And what do I do?
[00:01:04] So I feel like you have so much to share. So we’re just going to dive right in Tell me about growing up? Like, did you have like those quintessential little girl wedding, mommy dreams?
[00:01:17] Allison: [00:01:17] I absolutely did. I have always been obsessed with Disney movies and the Disney princesses that find their prince charming. And honestly, I still feel that way. I think it’s good to have those kinds of dreams and confession time. I even prayed as a child that my husband would be tall and athletic and have two eyes and blondish brownish hair. And that describes Shane. So, you know, sometimes dreams are good and they actually come true!
[00:01:52] Cassandra: Oh my gosh, that’s perfect. Literally, as you’re describing it, I’m like, “Oh my gosh, that is literally Shane.” That’s fantastic. So how did you guys meet?
[00:02:02] Allison: So we actually went to the school together. He moved to Edmond, OK from Kansas City, Missouri, and my best friend at the time actually went to school with him in Kansas city before he moved here.
[00:02:16] And yeah, she told me, she said, Alison Shane treats girls so nicely. He is like a prince. He’s the best you thought? Well, I mean, why not? Let’s go talk to him. So I just started to kind of flirt with him in class and he would walk me to my classes. And within a couple of weeks we felt like we were going to be together forever, which is funny looking back on it because I’m like, I hardly knew what I wanted for lunch.
[00:02:49] Right. You really do now? Well, I can barely pick lunch today, but 15 and a half. I decided that Shane [00:03:00] would be my husband. And here we are. 16 years later, still. Going strong. So some things you can get, right.
[00:03:09] Cassandra: [00:03:09] Even as a teenager, not everybody, but in your story that worked out so well. And so I love that. I love that your sweet, sweet story, because literally you’ve spent half your lives together over half your lives now.
[00:03:22] Allison: [00:03:22] Yeah.
6 Months of Marital Bliss and Two 21st Birthdays
I think no matter what age you are, it’s really hard to feel like a piece of what you thought your future would look like is gone, and you kind of lose your innocence. And to a large extent, it’s hard to be around your friends who are planning to go to the next football game while you’re talking about really serious treatments for a disease.
[00:03:25] Cassandra: [00:03:25] But things didn’t go according to plan it. Wasn’t a complete fairy tale. What happened?
[00:03:30] Allison: [00:03:30] Yeah. So we got married July 17th of 2010 and in March 12th of 2011 Shane was diagnosed with multiple sclerosis and that was absolutely something that we did not plan for. We did not wish for hope for could not have imagined.
[00:03:55] It just completely threw us off course, to be honest. I mean, we were. 20 when we got married and 21 when he was diagnosed. And I think no matter what age you are, it’s really hard to feel like a piece of what you thought your future would look like is gone, and you kind of lose your innocence. And to a large extent, it’s hard to be around your friends who are planning to go to the next football game while you’re talking about really serious treatments for a disease.
[00:04:26] And it just. Kind of disconnects you from a lot of people. So that was certainly not something that we had planned for as kids.
That Night
I don’t want to go anywhere. Like you can’t even touch my body. It’s hurting so badly.
Allison remembering Shane’s pain the night he felt the first
[00:04:36] Cassandra: [00:04:36] Can you tell us what you noticed? Like how did you get to the diagnosis?
[00:04:41] Allison: [00:04:41] Absolutely. So Shane actually woke up in the middle of the night and he had the worst migraine of his life. His body was hurting and then the left side of his face and broke, went completely numb.
[00:04:56] And I actually remember kind of rolling over in bed and not feeling him next to me. And I just instinctively knew that something was wrong. So I get up and I found him on the bathroom floor and he just kept saying, I don’t want to move.
[00:05:11] I don’t want to go anywhere. Like you can’t even touch my body. It’s hurting so badly. Yeah. So in my mind, I kept thinking. Maybe it’s a migraine, maybe, you know, it’s a small stroke. I just honestly didn’t have a clue what could cause all these symptoms to happen at the same time. So I got him back into bed and the following day he went to his primary care doctor and they were like, oh yeah, this is a really severe migraine.
[00:05:41] That’s why you have all this numbness and tingling. And we’ll put you on some blood pressure medication, because hopefully that will get rid of migraine and yeah. And so nothing got better. In fact, it kind of got worse. And so my grandmother actually passed away later that [00:06:00] week and I was supposed to travel to little rock Arkansas for her funeral.
[00:06:04] I am the designated speech giver in my family. So when someone passes away, I always right. The eulogy and give it for the family, which is an honor. But that week I was just so distracted with Shane’s health. So we decided we would just meet at mercy hospital. I was on my way to little rock and I thought, you know what?
[00:06:26] I don’t really want to leave town until I know that Shane’s okay. So I called him and I said, just meet me at mercy. This was about noon and eight o’clock that night. They had him diagnosed with Ms. Which seems crazy because that’s eight hours. It’s honestly super fast because most people go for years with symptoms and no diagnosis.
[00:06:49] Cassandra: [00:06:49] Oh, wow. And you hear that too, right? Like I knew something was wrong or sometimes there’s the opposite of like, no, it’s really just a bad migraine. And so that whole, like trying to [00:07:00] figure it out and I feel like the support of a spouse can really make the difference or friends even being like, this seems odd.
[00:07:06] Something’s not right. So. I’m so glad that you were there for him. You, you really are that friend though, too. That’s like, I’m there, you need something I’m there. And so I can imagine for your heart that there’s no way you could’ve gone to little rock without knowing something’s not, something’s not right.
[00:07:22] Allison: [00:07:22] So yeah. Yeah, exactly. That it would really just ate away at me. And I thought, well, best case scenario, we rule out everything and I can go comfortably. And then instead it was. This horrible diagnosis. And I had to get in the car at eight o’clock and drive the five and a half hours to little rock. So that was certainly a very difficult trip to make, but, and, you know, Shane wanted me to be there for my family and it made sense.
[00:07:48] So we trekked on board
What is Multiple Sclerosis?
…if you’ve ever seen a rat or a rabbit to through a wire and you sort of have this frayed wire on the inside, and you can see where the animals eaten away at the coating around the wire.
Allison describing MS
[00:07:51] Cassandra: [00:07:51] Ms and all. So for those of us that don’t know, can you can use tell us what Ms is? What is multiple sclerosis?
[00:08:00] [00:08:00] Allison: [00:08:00] Yeah, absolutely. So it is a progressively degenerative auto-immune disease. Basically what happens is your central nervous system identifies good parts of your body, but it sees it as bad.
[00:08:15] So you have this mileage sheet, it’s like a fatty tissue that sits around all of the synopsis in your brain. And those Synopsys are what help us make connections between. Our brain and our body parts. And what Shane’s body does is it sees those that fatty cell, the tissue around the synopsis, and it actually eats it away when it attacks his body.
[00:08:43] And it may look at a healthy T cell and decide that it’s unhealthy or that it’s a virus or something. And it just attacks his body. So basically what ends up happening is you have a broken connection everywhere that there’s a scar. So multiple [00:09:00] sclerosis, many scars is kind of how I describe it. And if you can imagine if you’ve ever seen a rat or a rabbit to through a wire and you sort of have this frayed wire on the inside, and you can see where the animals eaten away at the coating around the wire.
[00:09:20] That’s what Shane’s body does. So the next time that an electrical current goes through that wire, it may not ever make it to the end point because it stops where it’s broken. So Shane’s body does that. Let’s say his brain tells him I want to pick up that cup. Well, if it goes through a broken connection, he may go to pick it up and then just drop it.
[00:09:42] So it’s, it’s pretty crazy, and it it’s different for everybody, but for the most part, that’s kind of what’s going on internally that causes permanent damage common at all, and people in their twenties. I mean, he’s 21 getting this diagnosis. How is that? [00:10:00] The, I knew a woman who had Ms and she was in her forties and I was like, oh, that must be something that, I mean, It’s not old by my standards at this age, but you know, when you’re in high school, college, you’re like that’s for older people.
[00:10:12] So do you happen to know the statistics on that?
[00:10:17] No. I think most people are diagnosed mid thirties to early forties. I think increasingly we’ve seen younger people being diagnosed because we now know more about the disease and we were able to identify symptoms, but even with. That taken into account. I do think generally mid thirties to early forties or mid forties would be kind of a more normal diagnosis.
[00:10:43] And it actually predominantly impacts women. It’s about an 80 20 split. So males tend to have the more aggressive forms of Ms which hearing that was not super pleasant, you know? Cause you’re thinking. Well, how rare is it that Shane has it? Well, it’s already super rare. And then from being young, it was kind of rare on rare.
[00:11:07] So, you know, you just have to accept those things and move forward as best as you can.
Diagnosis
We had to send his results to another hospital because we were really shocked by what we saw. And we didn’t want to tell you the wrong thing.
Allison sharing the doctors’ process
[00:11:13] Cassandra: [00:11:13] That goes back to your point of getting diagnosed within eight hours was actually huge eight hours. The second time. We’re not going to count the GP (General Physician), but the second time, because you, you went back in and you got a diagnosis, which is not the, kind of the way that most of those tests would have gone, they would have maybe pushed that out. So that just affirms your point of like, we got very fortunate to get diagnosed at eight hours.
[00:11:39] Allison: [00:11:39] We did. And I honestly wish I knew who the ER physician was that came out to talk to us because. I wasn’t really in a good place. And I kept asking, why is it taking so long? I don’t understand what’s going on.
[00:11:53] And one of the radiologists came out and said, I’m so sorry. We had to send his results to another hospital because we were really shocked by what we saw. And we didn’t want to tell you the wrong thing. And now I’m so grateful for that, that they took all that extra time in the moment. All I could think about was, I mean, there’s nothing wrong, so why are we still here?
[00:12:14] And obviously that wasn’t the case. So I wish I could, I might have to figure out how it’s tagged with that physician and just apologize because then my head space was not good in the ER.
Future Changes
my tax returns showed I made a whopping $11,000 that year, and that was with working full time.
Allison, realizing that she would need a career change to support her family
[00:12:27] Cassandra: [00:12:27] I think that really demonstrates your heart of like still having compassion for that person. What is going through your mind about your lives and your future and your career paths where you maybe not in that moment, but shortly thereafter, you have to be thinking, what does this mean for us?
[00:12:56] Allison: [00:12:56] Yeah, absolutely. So at the time that Shane was diagnosed, I was working as a teacher’s assistant.
[00:13:04] We’re a special needs child at a local elementary school. And my tax returns showed I made a whopping $11,000 that year, and that was with working full time. So I quickly realized that teaching was not going to cut it. And even if I had a classroom to myself, I still wasn’t going to make enough to provide for both of us.
[00:13:28] So I switched my major, actually just majored in. Political science because I thought it was interesting. And I thought I could tolerate the classes and get out as fast as humanly possible. So I did. And after I graduated, I applied for a ton of jobs. I mean, I was just picking up virtually any kind of job that I could think of.
[00:13:50] And of course I got zero callbacks and felt very depressed, very discouraged. Really hopeless because I thought here I am at this point in my life where I’m supposed to be providing security for my family. And I can’t even get a local nonprofit that requires half or high school diploma to call me back, you know?
[00:14:10] So I felt, I felt extremely discouraged and I just kept praying like, Lord, where am I supposed to go? I don’t, I don’t understand what you’re doing, know what I have to do. And I don’t know how to get there. And during a prayer, I felt led to apply for law school, which is hilarious because honestly, I don’t even tell people that I’m a lawyer because I don’t think it’s significant.
[00:14:36] I’d rather just talk about life and things that people have walked through. I don’t ascribe any certain special significance because I. Happened to pass the bar exam
[00:14:49] Cassandra: [00:14:49] You’re not a typical lawyer. I think of you more like a Bob Goff, lawyer, that’s not relevant to anything about you. Like, it’s just kind of a side note. I’ve met a lot of lawyers and I would totally agree with that. I wouldn’t lead with that. I wouldn’t even include it unless it became necessary. And I think that’s kind of how you approach it too.
[00:15:07] Allison: [00:15:07] Yeah, exactly. Yeah. So I was totally thrown off by that, but I, I mean, I had been like in the fetal position on the floor crying, very discouraged and I literally picked myself up and applied for law school. And when I got into it, I understood why God led me there because my brain just worked that way. He had just made me to be very analytical and I had done a lot of pageants. And so I was very practiced on, you know, how to have good, clear, concise conversation. And. Nice writing.
So it kind of all started to come together and it just, it really was one of the hardest things I’ve ever had to do, but it also was such an amazing blessing because the entire time I thought about, you know, I’m not just here for a career change, I’m really here to [00:16:00] hopefully make a difference in Shane’s life and to show him how much I care and how much I want to pursue the best for our family.
[00:16:08] And then on top of that, just. Recognizing that all things are possible with God. And I may not feel capable of walking through it, but somehow he led me through it. And I’m still here ticking away.
Breaking Stereotypes and Silent Diseases
[00:16:21] Cassandra: [00:16:21] I think that’s. That’s a tough, you handle that with such grace, because it really is. It’s a career move that I’m sure I know Shane well enough to know that he wasn’t like you’re going to have to buck up.
[00:16:32] Alison, because I can’t, I know that that’s something that you did, that you were like, this is something that I can do to make a difference in our lives. But you still handled it with such grace. And I think that that’s so inspirational to anyone who’s going through. Something that they’re like, I don’t have control over this.
[00:16:49] And you’re like, I don’t like a lot of it is just is what it is and I have to roll with it. But I still love Shane and he’s still my prince. So I love that so much. I’ve had to make changes for work and I know. When I met Shane, I was shocked because just so anybody listening can get an image in their head.
[00:17:11] He is a prince charming. Like he is, he’s just your bow 100%. And he’s super like super in shape, super muscular, like a bodybuilder type almost. And, and I’m not a gym person. Though I aspire. And there’s room for improvement. He, he definitely is like your typical quote gym person. She didn’t look sick.
Silent Diseases
Really taking a step back and recognizing that someone who has a handicap decal on their car may walk into Target looking completely healthy and normal, but they may be exhausted when they’re done and they may really need that close parking space.
Allison sharing how to give grace
[00:17:35] Can you talk about that? What are other stereotypes that I’m or somebody listening might have that you want to make sure that you change?
[00:17:45] Allison: [00:17:45] Yeah, absolutely. That’s definitely, probably the biggest one that we encounter when Shane tells someone that he has MS, or like, “But you don’t look sick and you’re in shape and you have fun and you have joy in you’re fun to be around, you know, it’s kind of like, how could that possibly be?”
[00:18:04] And so, yeah, definitely the first one is just that. Sometimes people have silent diseases. You know, they have conditions where they may look completely healthy, but internally they’re fighting a battle that people can’t see. And I think that’s true of all of us, you know, even if health is not it, we all have battles that other people can’t see.
[00:18:25] So just. Really taking a step back and recognizing that someone who has a handicap decal on their car may walk into Target looking completely healthy and normal, but they may be exhausted when they’re done and they may really need that close parking space. And then another thing too, that I’ve encountered pretty frequently is that people have a tendency to think that symptoms are exaggerated or there’s no possible way that someone could still feel bad after all this time.
[00:18:55] And, you know, Shane frequently comes home and sleeps during the middle of the day. You know, he’ll get up at seven o’clock in the morning. And by two he needs a two or three hour nap. And it’s hard for other young people to understand because they just think it doesn’t make any sense. How is it possible lies to you to take your nav to survive?
[00:19:17] Politically. Yeah. So I would just encourage people that, you know, if you know someone who does have a condition, that’s kind of hard to understand, just believe them. When they say that they’re tired or they can’t make the birthday party, they can’t stay out late. Or maybe they need some extra time to get ready.
[00:19:34] There’s things like that. That aren’t necessarily obvious. From the get go, I think are just important to keep in the back of our mind.
Symptoms and the Suck
…What I’ve recognized is I can’t control what happens, but I can control how I respond.
Allison on the symptoms
[00:19:42] Cassandra: [00:19:42] It sounds like what you’re describing is because his body’s constantly fighting itself. He is experiencing symptoms that we might experience. If we had a terrible flu or we were super sick or something was happening, we just feel fatigued and tired and our temperature is off. I know that’s important to him. And, but he feels that way all the time.
[00:20:05] Allison: [00:20:05] Yeah, exactly. So when it’s really hot outside, he’ll sleep for 10 to 15 hours during the middle of the day. And the heat just completely fatigues him. And then sometimes his body will just decide that he doesn’t need his left leg today.
[00:20:23] So his leg will go numb or it might be in a lot of pain. And so every day is just something different and he don’t really know what to expect. But what I have found is that there’s kind of some freedom in that because I used to live under the illusion that if I just tried hard enough, I could control what was going on around me.
[00:20:45] And what I’ve recognized is I can’t control what happens, but I can control how I respond. And so just making the conscious choice to say, All right. We don’t know if you’re going to walk tomorrow. So why don’t we just live today with as much joy as we possibly can and really just pursuing that every single day surrender, like we don’t know what tomorrow holds nobody does.
[00:21:11] We just don’t have the luxury of pretending that pretending that we do. And so that, that kind of perspective shift I think is, is really important. When you’re walking through a grieving season or, or something difficult, it’s just recognizing, you know, what, we can’t control it. And sometimes there’s a lot of freedom in that when you just say, we’re just going to choose to be joyful and do the best, we can complain a little bit along the way.
[00:21:38] Cause you know, you got to do that sometimes, but not stay down, you know? Keep keep going forward.
[00:21:45] Cassandra: [00:21:45] I love that. You’re I love that you leave the room for the complaining and the, this sucks. Like this just sucks. Yeah. Keep moving along. Like just gotta keep going on. I love that you leave room for both. And I think it’s so important because there’s a, what do they call it?
[00:22:01] Toxic positivity of like being like fake positive and I know you don’t have room for that inside your persona at all. But I, I love that, that you have that balance of like, it’s okay to embrace both. You could even do it within moments of each other. It’s like multitasking feelings, just shifting back and forth.
Encouraging Others From the Mud by Showing Up
“..you still have dreams to pursue. And just not, not being willing to give up on that, even in the middle of the mud and the yuck…”
[00:22:21] Allison: [00:22:21] That’s so true. Yeah, you’re right. And I think, I think a lot of times that also plays into like how comfortable people are talking to you about your struggle, because they often feel like, I don’t know how to encourage someone, who is facing paralysis. Like right now, Shane’s in the middle of a relapse and he’s doing a lot better than he was eight or nine weeks ago, but his body just went totally numb and they didn’t know if he was going to walk or recover.
[00:22:49] And so people, I think, feel like how, how do you encourage somebody like that? I don’t know what to say. So I’m just not going to say anything. And what we’ve kind of realized is [00:23:00] sometimes it’s nice to just have somebody that. Sits in the mud with you and says, this really sucks. And you’re like, yeah, it does.
[00:23:06] And let’s go get a Starbucks or let’s go to the park and take a walk or just come sit on the couch and watch movies with us. And you don’t have to have something to say, you can just be a great listener. And that’s really been the biggest blessing for us is just having people around us that are like, Yeah, it does suck.
[00:23:28] This is, this is reality. And it’s what you’re feeling is real, but together we can still move forward and you still have value and you still have a life to live. You know, you still have dreams to pursue. And just not, not being willing to give up on that, even in the middle of the mud and the yuck.
[00:23:47] Cassandra: [00:23:47] I love that “sitting in the mud with them.”
Examples of What to Do or Say
What could I ask you guys in order to get into the mud with you?
[00:23:51] How so? I think you’ve educated us on how we can sit in the mud with somebody, but how do we, how do we even ask to sit down? [00:24:00] Like, so what would be a great question for me to ask Shane? I know he’s not doing well. What could I ask you guys in order to get into the mud with you?
[00:24:11] Allison: [00:24:11] I think. Just sending a text message, even that just says, Hey, I’m so sorry that you’re walking through this.
[00:24:18] I’m here. If you need anything, do you want me to go get a movie for you? Or do you have something that you really like to eat all stop by and bring it over? Like, you know, Shane loves tacos, so basically you could bring any kind of taco over to the house and he would be thrilled. And just kind of making yourself available to come and hang out.
[00:24:41] And sometimes, you know, everybody’s kind of in a place where they’re just not in the mood to have conversation and that’s okay too, but what’s nice is that when Shane is ready, he goes and looks back and sees. All these messages from people who reached out to him and people [00:25:00] remember that, you know, even if in the moment they don’t take you up on your offer, they will never forget that you reached out and that you took that time to have that tough conversation or to be available for it.
[00:25:12] So really just sending a text or a phone call or a Facebook message that just makes you available. I think speaks volumes and really is a blessing for those people walking through the trial.
Story Wrap-Up
[00:25:22] Cassandra: [00:25:22] That’s awesome. I think that’s very helpful, especially for people like me who are like, but Shane looks fine, but suddenly he’s not feeling very good. Like what can I do? So it’s something practical that we’re all capable of asking is, “Gosh, I know you’re not feeling great, but I also know that you love the mocha Choco latte, whatever, let me pick you one up.” So that’s awesome. Alison, I so appreciate you spending time with me and my listeners today. And I am thankful for you and thankful for you sharing your story.
[00:25:55] I know it’s not, it’s not an easy story. It’s not a fun story, but I think you’ve [00:26:00] really encouraged us on how we can do better at supporting our friends with. Their struggles. So thank you.
[00:26:09] Allison: [00:26:09] Thank you. Thank you so much. It was such a great blessing to me, just to be able to share my story and just to pour in, hopefully to somebody fart and just to be an encouragement.
[00:26:20] So thank you for giving me. Your opportunity.
[00:26:23] Cassandra: [00:26:23] You’re welcome. I’ll see you later. I don’t know about you, but this episode makes me want to sit in the mud and laugh with a friend. Thank you for being a great listener and letting Alison feel Needed and Known. Want to talk more between episodes. Follow me on Instagram @neededandknown. For more information about multiple sclerosis click here.
Until you need me next time. Bye!
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