Episode 40: I Am More Than My Disease | First Person Diagnosed with the Disorder that I Named

For years, she did not know what was wrong with her body. The symptoms, the tests, the experimental treatments - the doctors were uncertain. Until finally, Whitney was diagnosed as the very first person with a rare gene mutation which is normally fatal for babies in the womb. 

Whitney’s miraculous life goes beyond survival - she named her disease using a word that weaves hope into the name: MAGIS syndrome. She also volunteered to undergo many painful, tiresome medical tests to help others in the future with the same disease.

With all of this, Whitney does not pity herself. Rather, she sets big goals and dreams for herself to accomplish. For example, she has her master’s degree in education, she is now able to work full time with the help of her medication, she has written books, and she does public speaking. For Whitney, the important thing is finding a balance of work & rest as well as working together with the body of Christ.

Through all of these things, Whitney is more than a conqueror through Jesus and she stewards well the gifts God has given her to be a light in the world.

Check out Whitney’s website (including her books): https://www.whitneylaneward.com/ 

Let's Connect!

Instagram: @Giving_Gal

Facebook: https://www.facebook.com/GivingGal 

YouTube: Shine Forward Creative

Website: https://shineforwardcreative.com/ 

Transcript

SPEAKER_00 0:11

Hey friends, it's Stephanie here with the Only God Podcast, sharing stories Only God could write. And today I am here, I'm so excited. We've been trying to record this for a while with my dear friend Whitney Lane Ward. Hey Whitney. Hi, Steph. I'm so excited to be here. Thank you for joining. And um, I always start off with my guest is for you to share our only God connection. How did we meet?

SPEAKER_02 0:40

All right, well, this is such a random way that you know it can only be of God the way that we met. Um, it was in 2019, and we were both at the Right to Publish uh writing conference, and we just randomly standing in a line, like and was standing beside each other, and just we striked up a conversation and we just immediately clicked, and uh we ended up sitting together, having meals together, and striking up this really cool friendship, and even so much so that my mom was uh gonna come and pick me up. She was like an hour away at her sister's house, um, maybe a little bit longer, and uh, she was dreading driving through Chicago because you you gotta know we live in a very rural area, so that was just a lot. It gave her almost a nervous breakdown trying to so you graciously offered to drive me to your house so my mom wouldn't have to um come all the way through Chicago to get me. And I feel like that that drive just solidified so much of our friendship, and we've been we've been good friends ever since.

SPEAKER_00 1:57

We've been good friends ever since. And I do think that was even an only god thing that you know, this is where I think my giving journey always comes in. Um, is like that was gonna be my gift of the day. Like you were just sharing with me that your mom was gonna have to come pick you up and just a little bit. And I think this is good for the viewer to remember of there was no reason why I couldn't have offered you that gift of like, hey, do you want to just ride with me? Because I knew where your mom was coming from. It was actually probably a two and a half hour drive, and she'd be going like right by where my house was. And so like the gift of offering, like seeing the opportunity, don't be scared of like, okay, what if she says no? Thinking about writing with a stranger, and and you're right, like, and then I got to meet your mom, which was so fun. Um and I've developed a friendship with her. Yeah, I think the other thing too is what's interesting is even God's timing, because you and I had attended the year before, I think the uh writers' conference at Taylor uh university. Hadn't you been at Taylor? Yes, we did. Yeah, and I remember seeing you, but we never connected. I connected with a couple other ladies. And so I just like always wonder with God is like, okay, why didn't we connect then? And why didn't we connect now? So I want to jump into your only god story and just sh uh Whitney, I will say, has one of the most incredible stories I have ever heard. She is a true walking miracle, and jump right in wherever you want to start and share your story.

SPEAKER_02 3:38

Well, it's been a long and winding journey with a lot of uh twists and turns, but God has been faithful every step of the way. And I I hope through my story the the viewers can see that and that he uh can do the same for them, just you know, work out all the details uh of what may seem uncertain and uh a lot of unknowns. But uh yeah, I'll just start right from the beginning. When I was born, I had uh club feet, dislocated hips, uh, despite being a C-section baby. I weighed four pounds, nine ounces full term. Thankfully, the the hips and the feet they were fixed with braces and uh casts. But as I got older, I battled pneumonia, sinus infections, ear infections. I was a severe asthmatic. And it was very odd, but my pediatrician just told my parents, you know, some kids, it just takes a while for their immune system to get stronger. And Whitney's obviously one of those, those kids. Um, but when I was six years old, we found out that was not the case. One morning I woke up with excruciating pain in my knees, they were red, they were hot, um, I couldn't, I couldn't walk for several hours. The next day I could walk, but it was with a severe limp. And I also spiked a fever of 105. So my parents were urged by the the pediatrician to take me to Cincinnati Children's. And it was discovered there that I had septic arthritis. It was treated, I responded very well to the treatment, but what that diagnosis led to was the doctors finding that there was a much bigger issue. Uh, my blood counts, what wasn't supposed to be high was high, what wasn't supposed to be low was low. And I was tested for so many diseases: lupus, leukemia, MS, like everything. But everything came back negative, which was good. You know, you didn't want to have those things, but without a diagnosis, there was no clear treatment path. And so my my treatment was trial and error at best. And so my doctors just could only go with their gut on what they, you know, thought, hey, maybe we'll throw this, we'll do that, like whatever we can just to keep her system from deteriorating. So several uh doctors' appointments and tests later, my doctors were able to give me a very broad diagnosis of autoimmune um hemolytic anemia complicated with combined immune deficiencies. And that was very broad. It was just basically we don't know what it is, we just know it's in a family in these categories, right? Categories, but we have no clue like what kind it is. So again, my my care was trial and error at best, but God did bring the right doctors in my life because you know they never knew what they were dealing with, but they did everything exactly right, and which is is a miracle. But uh in 2010, my immunologist told me at an appointment that he sent my case to the National Institute of Health. Most people know it as the NIH, so that's what I'll refer to it going forward. But uh, so the NIH uh they had discovered this new disease, and I had a lot of similarities to it, and so he sent my case to this doctor, her name was Dr. Sue, and he wanted uh me to be prepared that I might get a phone call from them. And so eventually I did get a call, and I fit the the protocol of of this disease. And so the nurse she told me, you know, we we want you to come for a visit and we want to see if you have this newly discovered disease, but just to prepare you that we'll probably never figure out what is wrong with you, you'll just be valuable research to us. And I understood why she said that. You know, there's probably other patients that got their hopes up because I mean, you know, you get this like once-in-a-lifetime opportunity, and you think this is it, I'm gonna get answers. And then when you don't, you know, it just becomes you become even more hopeless and you know, um, like, okay, I thought I thought I was gonna get answers and maybe get better quality of life. So I understood why she said that, but I just Can I ask a question?

SPEAKER_00 8:51

Yes, ma'am. Um, two is okay, if if you're okay with discussing this just for the audiences, how old were you when you know you're getting ready to what one you hear this news of like, hey, you might have this newly discovered disease and you're gonna be going to the NIH. How old were you at this time?

SPEAKER_02 9:10

So in 2010, I would have been um 22, but I didn't actually go because it takes like a while because uh they have to do preliminary preliminary blood tests to see if they even can bring you to the NIH because there's all these like guidelines with the protocol. So I didn't actually have my first visit until I was 23. So it was uh in August of 2011.

SPEAKER_00 9:39

Okay. And I wanted to ask that question because I think it's important of you started having your inflammation, your septic arthritis when you were six, and now you're 17 years later of you working with doctors, going to the hospital, constantly not knowing what's gone. I wanted the audience to hear this wasn't like a three-year period for you. This had been a pretty couple of decades almost battle for you. And then also just on the question of the newly discovered diseases, was there anybody else alive that had this?

SPEAKER_02 10:18

Yes. Now, I cannot remember how many. Um but but there was uh some people alive. I even came in contact to one uh person at one time, and her sister had it before her. Sadly, her sister passed away from it because at that point they didn't have enough research to know what would, you know, cure it or at least you know give them the quality of life. And that ended up being a bone marrow transplant. And so the sister who they did, you know, they discovered it and she, you know, her sister passed away, but you know, they were able in time to know what what needed to happen. So she got a bone marrow transplant and she's alive and she's doing well. Okay, sorry, move on with your story.

SPEAKER_00 11:07

I just I wanted to pause that just to give some base level of where we're at.

SPEAKER_02 11:11

Yeah, and I do I do want to add to that, I think I'm glad you brought this up because um with treatment over those those years, you know, my parents had to decide at different points in my life were they gonna allow doctors to try new experimental treatments? Because at that time, that's all there was. It was either this is the last thing we can do, or she's gonna slowly deteriorate. And thankfully, you know, the thing that they did that was extremely experimental at that time, it did give me the quality of life that I needed to get to the point where I could get to the NIH. Yeah. Okay, very good. Thank you. Yeah, you're welcome. You're welcome. So, so yes, so I did go to the NIH, but I did not end up having that disease. It was called Dock Eight. Um, but thankfully I was fascinating enough to uh doctor stew that she wanted to keep me um and uh create a whole new protocol. Um which I mean that's a miracle in it in of itself, you know, because protocols are they're not like just easy. It's not like going to a hospital where you can choose your doctor, you can say, I have this issue, can you help me? You know, it's research-based. There's clinical mixed in with it, but it's research-based. So you have to fit uh a certain amount of the criteria to even be considered as a patient. So she created this protocol for me. And so this was uh this was probably spring of 2012, is when I knew she she created this protocol. And it would have been November of 2013. I went for a visit, and I was introduced to a young doctor at this time. Um, his name was Ian Lamborn, and he was getting his MD and PhD in uh immunology. And he had come to Dr. Sue's lab to work on his dissertation, and he was given my case. And so during this time, I discovered from Ian that he actually found what had been causing my disease all these years, and it was a rare gene mutation. And so at that point, I would have been 24, and he discovered this gene mutation. It had mutated at some point while I was growing in my mother's womb, and I was the first person in the world to be discovered with this disease, which is cool, it's not on anyone's vision board, of course. Like my dream in life is you know to be the pioneer of a disease. Um, but you know, when you've had so many ups and downs, you kind of feel validated when you get um this this diagnosis because over the years there's people that don't believe you. You're either faking, you're not as sick as you are, and you don't look sick. Why are you getting all these accommodations? And so it was really uh, you know, a feeling of okay, yes, I'm seeing, I have this diagnosis now, and it's real, and people can see this. But the cool thing was that because Ian had discovered the gene mutation, my case would become the subject of his dissertation. And again, like all these, like, what? Like, I didn't dream of this, but this is really cool, you know.

SPEAKER_00 15:01

I want to pause here, just as somebody who's like making a film right now. It's just like I feel like God's setting you up for like this incredible story, you know? It's like bringing in the characters that are going to help you along the journey. You know what I mean? Like you're this main character, and you're you're getting ready to go on this journey that you like, you said is never planned for this. You never like said.

SPEAKER_02 15:24

It did, it did feel a little surreal, uh, and like that. And I'm like, no one's gonna believe this, you know, but it happened. It happened. I have the pictures to prove it. It's published now in a research journal. But uh, so what doctors did after that, like the normal procedure, is they went to different um seminars and um conferences trying to find another patient who had this illness. Um, so you know, they could have more research, they could know, okay, this is how the gene mutation presents, this is what to expect, you know, with with this disease. But they searched a year and a half and they could not find anyone. And that was not normal. Typically, when you find the first patient, you have doctors are like, Yes, I have a patient just like this, and you know, this is probably what they have. And um, so it's very unusual. And so, what my doctors were surmising is that most babies are either stillborn or miscarried with this gene mutation. And so, how the NIH does their visits at the end of each visit, they have this big round table discussion with all of your doctors. And so, me and my parents were there, and they give you all the results and everything that they did that past like week. And and they explained all this, and so my mom looked at my main doctor and said, So, what you're saying is that all babies are a miracle, but my baby's even more of a miracle. And Dr. Sue said, Yes, it's a miracle she survived her pregnancy. It's a miracle that she made it to at this point, I think I was 26. And um, it's a miracle that uh she's doing as well as she's doing because this gene mutation is horrific. And I remember sitting there again, like, I can't believe this is my life. Um, but I knew in the midst of that diagnosis was my purpose that God had given me, and that I could show others that miracles are real, and that if I can keep climbing the mountains before me that I had in front of me, then anyone could do that. And so yeah, it was it was a surreal moment, and you know, I didn't know exactly how that was gonna play out, but what God had in mind went it's visions 320, it went exceedingly abundantly beyond what I could ever have thought or imagined. And so because I was the only one, they found out this g mutation in 2013, and they didn't find anyone else until three and a half years later. And oh wow, how did they find that person? Um, just continue to search, put out like to colleagues, and uh that person was actually in Australia.

SPEAKER_00 18:40

Oh wow, yeah, it's amazing that they found somebody like not even in the US, like out of the country. Yeah, yeah.

SPEAKER_02 18:47

Well, and that's the crazy thing. Um, there's only I think five or six of us in the US, the rest of the patients are in different countries. So that makes it even more of a miracle that I was the first one to be discovered with it. Right.

unknown 19:03

Wow.

SPEAKER_02 19:04

So because I was uh the first one and it took three and a half years, you know, I'm the only one who's working with my team. I'm I'm giving the blood, I'm doing the test, like I am it.

SPEAKER_00 19:18

And which Whitney, do you want to share like a little bit of like what all the testing that you go through? It's not just like, hey, I'm just gonna give some blood. Like it's pretty intense testing that it is, it is, it is and it's voluntary, right? Like you don't have to do this.

SPEAKER_02 19:36

No, I don't, I don't, but you know, the reason I did it for several reasons, you know, I knew eventually they could find better treatment, not and it would help me and other people. Um, but also uh this gene mutation is dominant, so there's a chance that I could pass it on to my children. And so, of course, you know, I'm not a mother yet, but at some point I want to be and I want to give them their best chance of a quality of life if I would pass it on to them and have been able to open those doors where when I do have children, um, that the medication is in place, they know what to do to keep them from having to go through the things that I went through. So there were several reasons why I decided to go through these awful, awful tests, but I will tell you one that is the most bizarre. So it was a blister study test, okay? And so what they did is there was this like plastic uh contraption type thing, and it had uh, so I think it was like six holes on one side, and then six, so a total of like 12 holes, and they put it on your forearm and they suction it so they're making blisters, and then after they do that, this is really weird, okay. So after they do that, they take it off, and the holes they aren't like like you can, you know, put things down in them, they're open, and so they suction that for about an hour, and then they took it off, and then they took a needle in the blisters, and they took out the fluid, and then they put the cylinder thing back on, and then they squirted the fluid from the blisters into each open room, and then they wrapped it up and it had to stay on my uh arm for the whole night. Now, what was this going to show them? I'm sure that's I don't know. Everyone is wondering what in the world is this going to tell them. But this is what it told him. So a part of my disease is my white blood count stays astronomically high like its base is between 22 and 23,000 and so they wanted to see would you know the white blood cells do what they're supposed to do and come to you know my body's defense and um so part of my disease it's a it's a messaging problem and so the white blood cells like maybe a very small amount will go to the thing they're supposed to fight but the rest of them sent to different parts of my body that do not need any assistance. So very little came to my aid with that and that proved their hypothesis that there was a messaging problem and that my white blood cells don't do what they're supposed to do fully.

SPEAKER_00 22:49

So and was that painful oh so painful it wasn't supposed to be but my body reacts violently you know the the fine print stuff that yeah is you know like 0.001 of happening it it happens to me so my hand actually swelled up because like it was how tight but it shouldn't have been you know it was just it was a mess but but it showed them what what they needed to know and they're like this has never happened before well and that's why I wanted you to share it because it's not like you were giving blood I mean you were doing things that were painful that caused reactions that you didn't expect like you have gone to great lengths to not only help yourself but help those that are going through it now and those that come behind you. It's just amazing but I think God has anybody who meets Whitney in person and you can probably see because I want to get into like what you've done the whole time you've had this disease and I know there's like the ending that I want you to share that you got to do. But it's like it is I feel like God has given you that that determination that persistence that this is going to cause pain but I can see through the suffering of who it's going to help and um you're someone that I feel like always is moving forward as opposed to like looking back or focusing on like your problem at hand. It's just like how do I address it? What do I need to do and move forward? And I want people to hear that because there's going to be people that listen to this one that they might be going through challenging times. There also might be people who are just stuck in a woe is me and then I want them to hear like your story and be like oh my gosh if Whitney all this and still live the life that you have it's incredible. So back to your story.

SPEAKER_02 24:55

Thank you thank you. Yeah so like this is um it's funny you mentioned a movie because I feel like this ending is something you would see in a movie um where it's like no this would never happen in real life you know you see movies like that because even though I was sitting there being like no one's gonna believe this. So like I said because I was the only one uh with my team and working with them um they gave me two amazing opportunities. So Ian he invited my family and I to uh attend his research uh dissertation at the University of Pennsylvania and then because they knew I was uh a creative writer they asked me to help come up with a name for this new disease so you know back in the day like years ago when you when it came to naming something you might name it after the doctor who discovered it or the patient that had it but that's not how they do it anymore. They come up there's like a very specific like protocol. So they come up with an acronym and then each letter in the acronym stands for a prominent symptom of the disease. That way when med students residents like doctors are trying to assess and figure out what is wrong with someone the name has the symptoms. Yeah that makes sense yeah so it had to be uh an acronym of you know a real name acronym and uh but it had to be scientific but I also wanted it to have hope attached to it because I believe that you know the names that we attach to something uh it it breathes life into it and so you know be honest like our our disease has a lot of uh hopelessness and fear and uncertainties attached to it that's I mean that's just you know that's not being a Debbie Downer that's just the truth the reality of it so yeah it's it's real and so I I wanted you know the first thing that they thought about you know when they hear their disease or say it is is hope. And so the name that I loved the most was Magis syndrome M-A-G I S Magis means more in Latin and it also references a Latin phrase to the greater glory of God which I thought was perfect because anyone who'd be diagnosed with this are miracles because scientifically we should have never existed. Right and um but you know I resigned myself to the fact that it probably would not be chosen I was just very honored to even get to help with it because they even um because there was like a group of doctors who had worked on this disease for years um not just the ones I saw but the ones in the lab doing like the experiments and and you know that type of thing. Yeah and they they even gave me their ideas it was kind of funny one that they came up with was gain syndrome and I was like no this sounds like laundry detergent I was like you might not choose any of mine but please do not choose gain like no um but uh so but of course yeah I resigned myself like probably will not be chosen um so the day of Ian's dissertation it really was an just an electric atmosphere you know you have all these famous prominent doctors that are there and med students who are excited to hear you know this about this new disease and so Ian he shared everything about the disease what patients could expect uh what goes on with with the body and what it attacks and then he got to the end and he wanted to thank everyone who had gotten him to this day and he said he especially wanted to thank me because I uh understood that all the bizarre tests like the the blister study tests and all the blood everything that I had done for them would not be in vain and wouldn't only help me but it would help others who would eventually be diagnosed with this disease. And then he uh proceeded to get a bouquet of flowers behind the podium and he offered them to me with a hug which just really validated even more because I did put myself through a lot of pain and you know discomfort so it was really nice that he recognized that. Right. Yeah and so um but then he's you know he's like but we we do have one more announcement to make and that is what the name of this new disease will be and he proceeded to tell the audience that the name that they decided to go with was Natchez syndrome. And oh my goodness I my mom was on one side my sister was on the other side of me I was elbowing them and you know they chose my name they chose my name and you know it was so exciting and because in that moment I realized that all I had been through had not been in vain. And you know because if I could help others realize that you know God sees you and he has a purpose in in the midst of the pain and if you just keep climbing you can have that hope and you can have those those rewards and those blessings that God has for you. And so to have that purpose and to be able to to share it and to give hope um that's like that's the most amazing feeling because I feel like I'm a part of something bigger than myself. But it was even so cool because after Ian was done um what they do is uh all the general audience leaps and then um Dr. Sue because you know that was his mentor who he worked and um his board they stayed and they would ask him questions whatever they saw that needed you know expounded upon sure as I was walking basically defending right that's when they have to defend their dissertation defending it exactly but as I walked out I passed Dr. Sue and she's like did you realize we chose your name and she was so excited too I was like yes I'm so excited so it was just cool that they were excited as as well and um it was funny because a nurse at the and I just recently she said hey did you know that Magis has uh she either said spiritual undertones or you know religious like themes or whatever and I said yeah I did know that she said that is so perfect for you and I thought that was so sweet that you know they did she know that you had named it she did yeah but like faith and hope you know right yeah yeah yeah but I don't think they realized at first that it had those um right so kind of yeah that makes sense yeah and to be honest I didn't I didn't tell them because I didn't want them to just focus on that aspect of it and not give it I wondered if they knew and the fact now that I know that they knew and they still went with it because of the message just like okay this is this is great. I'm glad that they figured it out on their own and I did not have to kind of cram it on those if that makes sense.

SPEAKER_00 33:10

Yeah no it does um I want to pivot a little bit from like your journey I mean this was decades in the making um of you discovering this and I also want the audience to know is like over I mean I know since I have known you like you said 2019 is you still have a lot of challenges. You're in the hospital a lot you get sick a lot so even though you had these discoveries and they're working on it like do just shortly or briefly like share a little bit about like your battle still continues to this day.

SPEAKER_02 33:52

Yeah yeah well so I'm on medication and um that's helping but the thing is is it doesn't reverse anything so like the damage of what this disease has done you know still exists. It stops the progression but I still have the issue so like I have arthritis chronic sinusitis I have colitis I have endocrine issues so there's it's it's not a gene mutation that only affects like one area it affects a lot of different functions uh of the body and so uh I've had over 30 surgeries and um 10 of those alone have been sinus surgeries because of the inflammation like last year I had to be emitted for pneumonia um and so there's just those those different you know things um in the winter I mentioned I was an asthmatic and thankfully I'm not an all-year round asthmatic anymore. Yeah but in the winter you know when I get those respiratory issues it does stir everything up and so and I still have to take a treatment every six months that uh so like my my illness is kind of a a double whammy because it has autoimmune components and it also has um immune components and so my disease it looks at things like we talked about with the white blood cells that should not it attacks its own self and so uh that's why the like the B cells um of my body they always have to stay at zero or else my body will start attacking itself my hemoglobin will drop and just a lot of issues but uh then because I get you know basically my immune system you know wiped out with with the medication I take every other week I have to take into the cool thing the I mean COVID was awful but there was awareness raised through it and one of those things was was plasma and like before that was even a thing people knew before before COVID I was taking that and so it kind of raised awareness of how important it is and so I take that every other week to replenish the B cells that Earth wipes out. So yes it makes it really really complicated.

SPEAKER_00 36:30

Right you're still in this battle um I want to pivot because now everybody's heard not only the journey that you've been on and I know you're not supposed to ask a lady her age but I think it's important for your story of like how old are you now?

SPEAKER_02 36:46

I know I don't look it but August 1st I will be 38.

SPEAKER_00 36:53

Okay that's what I was thinking. So you're 38 we're a decade apart. Um and you're 38 and so I just wanted to pause there and say that because you go from you're 38 to basically having a disease that for you know as long as they know nobody survived it and you've survived 38 years. And now I would love for people to share like all the things that you've done um you know from once you graduated high school what's your journey been and how God has continued to use you is I I think this is the part beyond of like them discovering your disease and you getting to name it. But really you've really allowed God to use you in your story. Thank you.

SPEAKER_02 37:44

And I do want to say that there is now I believe the last I heard was 25 of us living um the the first little boy though that I mentioned that was the second one to be discovered after me he did pass away sadly from the disease. So uh there's 24 of us I believe and only six of us are in the United States. And then are you the oldest? Thankfully no I was for the longest time that was kind of you know disconcerting. But now I think there's someone in their 60s and the the crazy part about this gene mutation is uh there's things that we all have but there's some things that might affect one patient but it doesn't affect the other like I don't have heart issues like some other patients do. I don't have cognitive issues like some other patients do. So there's there's different things but uh the the oldest I believe is in his 60s and he lives he actually lives in New York. Okay. So uh so yes I'm I'm not sure who the youngest is uh but it was really cool because last year when I was at the NIH um the third person who was discovered she's from France and I've been in contact with her since uh 2016 and I got to meet her and her parents last year and I like toured like gave them a tour was their tour guide around DC and it was so much fun it was a blast uh but I just wanted to throw out that out there that you know I'm I'm I didn't want them to think that I was still the only one. Yeah um there's there's about 25 of us now. Yeah that's amazing. Yeah yeah it is it is definitely but uh yeah through it God has just opened up doors and even though it's not something you would wish on yourself like to have something like this uh to have to walk with through life some of the opportunities I've gotten would have never happened if I didn't have this story. And so I have published five books and a lot of them are have to do with you know whether it's like specifically in the in the medical world or an underdog of of sorts who has to rise above something. So it kind of raises an awareness on empathy compassion and not everyone is going to look the same or have the same circumstances. So so yeah I published five books um I've been able to share my story all over the the country and even overseas uh I've gone on on mission trips and I've been on six mission trips so I've been able to do that I because of the new medication I am on um I am able to hold down a full-time job now and I'm a high school English teacher this past December I graduated with my master's in education and so yeah God's just done amazing things and you know he's opening up doors for like to expand my ministry and um you know to be able to be on podcasts to go to different you know places and speak. Um I was a part of uh I can't say much about it but I was casted to be on a uh documentary and that's scheduled to come out in fall of 2026.

SPEAKER_00 41:24

Basically it's a documentary about people doing things that no one else has done and right um so when I when I told these you know then yeah I named a disease like you might work for this so I'm the first yeah um so yeah I'm just really excited to see what God is doing and how he's opening doors and just you know what he's gonna do in in the future what I love too as long as I've known you um but then even knowing you know your backstory of you going to Asbury and you had to take some time off and and but then you you get back into school and um is you've always had a goal like every time I've known you is you know that goal of like writing a book and publishing a book um which then now you've done five you had that goal of getting to work full time um which that was something that you couldn't do for the longest time just due to your hospital visits and all of that that came with it. I remember when you telling me you're like I'm gonna start working on my master's I'm like are you kidding me? But can you talk a little bit about that? Because I've just always been like so in awe of you of you have not I think it would be and maybe you speak to this I don't want to speak but I even think like Whitney it would be okay to be like I don't have to do these things. I have this disease it's tiring it's wearing I've got this treatment so can you tell me and the audience really of like your mindset of always setting goals and working towards them and how has that helped you in your recovery and your journey?

SPEAKER_02 43:12

Yeah yeah I love that question. So I've always been a person who believes I'm gonna focus on what I can do not what I can't do. And you know when I do that I realize there's a lot more that I can do than what I can't do. And you know when you are someone who does have more sick days more down days than your average person I feel like if you don't set goals then you are going to become depressed. You are going to feel hopeless and you might not be able to move at the pace as a healthy 100% healthy person can, but knowing you have that goal and you can Inch towards it, it gives you hope. And so that's why I'm always setting goals for myself because I don't want to feel like, oh well, I can't do this because of this mountain in front of me. And I've realized I can do it. I might have to take a different, you know, course than other people can. But it is possible. With God, all things are possible. So that is that's why for me, it gives me purpose, it energizes me. And it kind of like when I am having those down days, it helps me see forward that, you know, when I'm feeling better, I can pursue this, I can, you know, go after this. Because I mean, that's what keeps anyone going, is a purpose. And so I feel like that's why I'm always, you know, setting goals is because I don't want to ever feel that hopelessness that I would totally understand why someone might with this illness. But you know, it's also the faith component. Having that faith, having that hope of a better life and God opening up doors and making beauty from ashes, that's what keeps me going. And you know, I don't want ever want to be a person who just gives up, if that makes sense. Now, with that being said, I have, as I've gotten older, learned to give myself some grace. Because when I was younger, it was, you know, I can never say, uh, oh, yeah, I'm not doing the greatest. Because if I said that, then that meant, okay, you lack faith, or you know, I can't, I it's gonna look like I can't handle this to people. And so, and now I'm like, okay, if I need to take extra days to rest so I can pursue my goals, then I can't care what people think. I have to do what I know because only I can know. No one else can. So, yeah, as I've gotten older, I've realized, okay, there is a balance to this. I'm not gonna go, you know, I'm fine, I'm fine, I'm fine. You know, like I'm okay. You know, I'm in the hospital with a low hemolobe. I'm okay.

SPEAKER_00 46:17

Like it's I'm glad you brought it up because literally I was gonna ask you about that. And that's one thing that I have seen with you over the years is you do have this balance of taking rest, taking time, even us trying to get this scheduled is we've been trying to get this interview scheduled for months. And I think it was in the winter where we had it scheduled, and you're just like, Steph, you know, I've got this, I don't feel well. And even as you were starting to feel well, it was like my voice, I'm still, and I love that about you. But I also it I want to say that for the people who are on the other end, like for me, I didn't get frustrated with you. It's like, okay, great, we'll just keep working on this. We just kept, and it's showing that other person who does need the time, who does need the rest, grace. And I've always been in the mindset, especially with the podcast, of like, if this a person's supposed to be on my podcast, God will work it out. They will come back around. Or, you know, like we prayed even before the call is like, God, this timing is perfect today, versus maybe if we were doing it. And so I've recognized that in you. Um, and what's cool about it is I've also been able to see is like, even though you take the rest, is you're still accomplishing your goals. You're still moving forward. Has that been an aha moment for you of like used to in the past where you felt like you just had to go, go, go? And now that, you know, you do take that time, is you're still like doing what God's called you to do?

SPEAKER_02 47:56

Yeah, I totally, yes. I I feel 100% like that. And what I've come to terms is, you know, like I don't want to seem um like I'm not dependable or, you know, um people can't count on me. But what I've come to realize is okay, am I gonna push through this and maybe not give 100% because I'm not feeling well? Or how about we move this in until I am feeling well and I can give you my absolute best, most 100%. And you know, God expects our best. So uh that's what I've had to come to terms with. I can't control the timing of when I don't feel well, and you know, I wish I could. Um I can't control what day it happens, when it happened, what time it happens, but what I can control is like I'm gonna take this rest so I can be at my best and accomplish more. You know, I also am reminding myself too uh, even though I'm doing better, I still have uh more of a weakened immune system. I get tired easily. And you know, I'm working, I'm a teacher. So like that's that's exhausting. And so I keep reminding myself of that. I don't have a perfect immune system. So I'm gonna need more rest than than some people do, and that's okay. It doesn't make me any less dependable. I will get it done when I can. And when I when I do get it done, and when I can do it, you will know I'm doing it when I can give you my all.

SPEAKER_00 49:35

What's some goals that you're working on? What are you focused on right now? Okay that you can talk about.

SPEAKER_02 49:42

Well, I have no clue when this is going to happen, but I do eventually want to get my doctorate. Um, that's been a dream of mine for years since I was like a freshman in college. It will eventually happen. But I got other things I gotta tackle first. Um, so you know, I would love God to expand my ministry where I maybe do some more speaking engagements and eventually write a few more books. And uh as work goes, we are expanding some classes at the school I work at where I'll be teaching creative writing classes, some journalism. Um, I'm bringing back the school paper, which I'm very, very excited about. And the kids are excited too. Uh, some of them are leaving to go to uh I don't know if you have this in Indiana, but it's like a career technical center for trade school. Yeah. And so some of them are leaving and they're like, oh, of course we're leaving when they're bringing back some cool stuff. So yeah, which that makes you feel good when they think like, oh, this is gonna be a cool thing that we're adding to. So we have that, we have that coming, and I do have my church's youth camp that I work in every year, and that is coming up in a couple weeks. I write the Vespers, and no one knows what a Vespers is, uh, or at least what we call Vespers. It's like a spiritual, uh, thought-provoking drama mini play. So I I write those those scripts for it.

SPEAKER_00 51:10

And I love how you say it. Like, I just I write the Vespers, like not a big deal. I'm just in charge of that. And then you're like, it's like a drama, like a play. I'm in charge of it.

SPEAKER_02 51:21

Well, I have my I have my co-director, so we it's a team, it's a team thing. So uh we both are individual talents, like me and my my partner, and it that's cool because we we bring it, we come together, and um it fits perfectly. It's we always say it really is like how it's described in the Bible, like a body. You know, this person was given this gifts, and this person was given this gift, so when they come together, they can accomplish so much more together.

SPEAKER_00 51:52

I love that. I think that's a great place to stop, is just that thought of thinking about the body of Christ and that we are all given gifts, but we have to use the gifts that we are given. Um, and I think get emotional thinking about it, but there are very few people like you, Whitney, who really do use um the gifts that God has given them, that use the day that God has given you, the time that God has given you. Um, and I know you didn't say it, but you are more than your mountains. And that is the title, I think, of your um children's book. And right, am I right? You you are right.

SPEAKER_02 52:35

It's more than uh your mountains is children's book, and then more than my mountains is my memoir.

SPEAKER_00 52:41

Right. And I love that. So I'm gonna wrap up today. Thank you, uh Whitney, and thank you for the audience to listening to the Only God Podcast, sharing stories only God could write. Hey friends, thank you for joining me today on the Only God Podcast. I hope today's story encouraged your faith and reminded you that God is still writing our stories each and every day. If you were inspired by this episode, please share, subscribe, and tell a friend. And to stay connected with me and find out about all my books and resources and events, go to shineforwardcreative.com. Have a fabulous day.