Wherever there are shadows, there are people ready to kick at the darkness until it bleeds daylight. This is Bleeding Daylight with your host, Rodney Olsen. Welcome. I'm so pleased you've joined me for today's episode. Please find and follow Bleeding Daylight on social media channels such as Facebook, Instagram, YouTube and TikTok. Links and contact details as well as hundreds more uplifting episodes are available now at bleedingdaylight.net.
How do you find and hold on to hope when you're facing debilitating health issues? How do you move forward when even doctors can't tell you what's going on? While it's difficult enough to face those struggles yourself, how do you go on when it's happening to someone you love? Today's guest has a remarkable story. She'll share that story in just a moment. I'm thrilled to have someone truly special with me today.
Jody Hudson is an author, speaker and Lyme disease advocate whose story is guaranteed to move you. Her daughter Alex spent 10 years navigating a medical mystery, 40 doctors, countless misdiagnoses before finally learning she had Lyme disease. Jody and Alex fought together with incredible faith and determination, travelling cross-country for treatment.
Though Alex passed away in 2018 at just 22, her legacy lives on through Jody's award-winning memoir, My Promise to Alex, and the foundation they built together. Jody's here to share a message of hope, resilience and the unbreakable bond between mother and child. Jody, welcome to Bleeding Daylight. Thank you so much for having me, such a pleasure. Your story is a deeply personal one and yet one you've chosen to share to help many others.
I'm wondering if you can introduce me to the Alex you knew before the illness started to take over. What was your little girl like back then? She was a mixed bag. She was funny, she was silly, but at a very young age she was an amazing athlete. And when I would see her on the pitching mound at her softball games, I would sometimes think to myself, who is this girl? Because she just had this driven competitive spirit about her. And I think she got a lot of that from her older brother.
She was always trying to keep up with him. She could be very shy, very quiet. But like I said, she could also be silly, goofy, into fashion, just a typical girl. She was only 11 when the symptoms first started. Tell me what was the first thing that she noticed that said that things were not quite right? Right, so the first thing that she noticed, and the doctors just thought it was attributed to her sports, was her joint pain and inflammation, specifically in her knees and in her ankles.
So we would just tape up her knees and ankles, give her ibuprofen, and basically suck it up, buttercup, kind of like you're going to be okay.
Well, after doing that for quite some time, and it didn't get any better, and it started getting worse, that's when we started taking her to her doctors, who also, like us, thought it was just possibly being overworked from playing sports or growing pains, basically kind of said the same thing, let's just have it ride its course, and I'm sure it's going to get better. And it didn't, obviously. And that continues to go on for quite some time.
As I mentioned in the introduction, there were a number of doctors that you went to. Was it doctors saying, hey, look, we don't know what it is, you need to see someone else? Where were you at that point? So when we were left with a diagnosis of it's a medical mystery, and we don't know how to handle this, those of us who are parents don't want to hear that. We want to be able to fix things for our children, especially when it's a medical situation.
So we didn't take that medical mystery for an answer. We kept looking for a diagnosis. We kept looking for somebody that would put the spotlight on what truly was wrong with Alex. It was actually Alex on her own that found a doctor at Cedars-Sinai, who, when we took her there for a consultation, within the first couple of minutes of reviewing her history, asked me, have you ever heard of Lyme disease? I think she could have Lyme disease.
And in 2017, I asked a very ignorant question, what is Lyme disease? Well, now I could write a book about it, which I did. So much has changed in those eight, nine years of time. As you say, you didn't know much about it, and most people wouldn't, but it seems strange that doctors don't seem to be able to pick up on the symptoms. Why do you think that is?
Doctors, I don't really fault them because back in 2017, people really weren't talking about it as much as they are now, especially with a lot of the celebrities, Justin Timberlake, Justin Bieber, others that have been diagnosed with Lyme disease. More people are asking themselves, hey, what is Lyme disease? Like, what is it that they have? I think that's brought a lot more awareness. Mainstream TV is doing a lot more interviews with people that have been diagnosed with Lyme disease.
So there's a lot more getting out there where people are being educated by it. One of my main reasons I started the Alex Hudson Lyme Foundation, Alex wanted to do this on her own. She was very, very bright. She had a full-ride scholarship to UCLA, and she couldn't carry through on that because she was bedridden.
When I knew that things were not looking good, I made her a promise, and that's why the book is called My Promise to Alex, that I was going to basically take her baton and run with it and be that advocate, be that educator, be that individual that people look at and people might be battling mysterious diseases, medical mysteries. If their doctor hasn't tested them for Lyme disease, maybe I could save a life. I couldn't help Alex, but maybe I can help others. And that's the thing.
You weren't able to save Alex, and yet I wonder if people had that early diagnosis that unfortunately Alex didn't have, is there treatment? Is there a way to overcome Lyme disease now? Do we know more about it? You are absolutely right. The diagnosis in itself, just getting the test, the positive test, can help so many people on their road to recovery. Early detection definitely can save lives.
Unfortunately, in Alex's case, because she had it for 10 years, it's a bacterial infection, so it impacted every organ in her body. When she passed away, she was only 57 pounds, so it literally impacted her digestive system, inflammation, everything. Individuals nowadays, if you have that proper testing done, there's so many paths of treatment that one could select that hopefully will help them.
And I feel like there is just that much more knowledge and a lot more Lyme literate doctors out there that can help those individuals that are battling from Lyme disease. How do people contract Lyme disease in the first place? It's a bacterial infection. Those individuals that have been bit by a tick, it's called a dirty tick that's actually carrying the Lyme disease, 35% of them will have what's called a bullseye rash on their body where the point of origin was.
But unfortunately, a lot of people do not get that bullseye rash and they don't realize that they have Lyme disease until maybe later on when it first appears as flu-like symptoms. In Alex's case, it was joint pain, inflammation, and a lot of times it gets overlooked and it's not known that they have Lyme disease. Maybe people just think that they're off, they're in fatigue, they're not feeling well.
If you have been bit by a tick and get that bullseye rash, if you get a round of antibiotics within the first couple of months, it can definitely help you to attack it right from the beginning and not have it go into a chronic illness. Tell me a little about Alex's story as she continued to grow after she first had these symptoms. It must have been very difficult for you especially. I mean, as parents, we want to protect our kids, we want the best for them.
How was that relationship between the two of you as there you are desperately trying to bring something to help your daughter and obviously, Alex wanted a cure as well, but you just couldn't find something. Yes, it was very hard. As I said in the beginning, as a parent, you want to fix things for your child, whether it's a skinned knee, a broken heart, and in Alex's case, obviously, it was this medical condition that she had. It was very, very hard.
I also was a single parent, so I was trying to do this all on my own, and Alex had a brother, so trying to keep the three of us all together while we were going through this horrendous situation with Alex. She went through this for 10 years, and so many doctors that we initially went to thought it was in her head. She actually was put on a psych lockdown at one of the hospitals that we went to where we were trying to get her medical treatment.
She also was thought to have an eating disorder, so as a parent, it was so tough because you go to the doctors, you go to these facilities that are supposed to help your child, and they sometimes can be the ones that can make things even worse.
I really had to dig deep down into my faith, Alex's faith, and as I talk about in the book, the book is part Lyme disease, but it's also part faith, and how that faith really guided us, and especially Alex, to be able to deal with this illness, be able to deal with doctors that didn't know how to treat her, and feeling like when the whole world has turned against her, God was the only one that was there for her, along with me, of course.
So it was a very dark time in our lives, but just like your podcast says, it's like how do you shine that light into that darkness when you feel like your whole world is crumbling around you? You obviously were calling out to God during this whole time. Did God feel distant because you weren't getting the answers that you wanted, or did God feel close? You mentioned He was the only one that seemed to still be there. Was there an extra closeness with God during this time?
So there was up and down, obviously, relationship with God during this time. There are times where, yes, we felt like He was the only one, and when we cried out to Him, sometimes we didn't always hear from Him.
We didn't have that response that we wanted, and I remember specifically a time where I was so frustrated, and I had taken off in my car, and I was just driving, and I pulled over, and I was pounding on the dashboard, and I was basically telling God, I was giving Him an ultimatum, either you fix my child or you take her because this purgatory that we are in right now, we can't survive from this. This is awful.
I sat there, and I cried it all out, and then I came back, and I was checking in on Alex, and that's when a bluebird appeared, and I asked Alex, I said, Alex, have you ever seen this bluebird before out in our fountain? And she said, yes, mom, I have.
She said, it comes to me every day at 3 p.m., and I know at 3 p.m. when I see that bluebird that God hasn't forgotten about me, and I have one more day here on earth, and I thought, all right, God, wow, I've got some apologizing to do because I really let you had it, but there you reminded me through my daughter that you haven't forgotten about us, and I think that's a lesson in life with no matter what we are going through, sometimes you're going to feel
like God is not there and that He's not listening to you, but then in the most beautiful moments, He will put a bluebird or something there to remind you that He's always there. He's always there for you. And it's interesting that it wasn't just a mom trying to share her faith with her daughter, but it's quite obvious that between the two of you, you were bolstering each other's faith, that you were there for each other, being able to share your own faith journey.
And I suppose there must have been times when one of you was doubting, as you've just mentioned, and the other was strong. Was that a constant throughout where you're able to be there for each other, for your faith? Absolutely, and I love that you just asked me that question because Alex was a typical child where she went in and out of her faith. There were some Sundays we had to drag them to church, other Sundays she wanted to go and she'd be the first one in the car.
She went through a time where she was really struggling. We were born and raised Catholic, and she just didn't feel like that faith was nourishing her soul. And so she started going to other non-denominational churches, other places of worship, to really find her faith, to find that relationship with God. And she came home one Sunday, and I remember looking at this piece of paper that she left on the counter. It was these notes of this church that she had just come from.
And I asked her, I said, Alex, I go, what is this? This is really interesting. She said, Mom, you would have really loved the message that they talked about this morning. She said, if you want, you can go back with me at six o'clock tonight because they have another service. And as a parent, we always want to support our children, especially when it comes to faith. So I said, yeah, let's go.
As we were sitting there listening to the message and then doing our worship through these beautiful songs that they were singing, I remember just grabbing Alex's hand, and together we raised our hands in the air and started singing. And it was such a beautiful moment. And in that moment, I looked at Alex, and I was so proud of her because not only had she grown deeper in her faith, but she brought me along for that journey as well.
And that really sustained us through her whole illness, because there would be times where she was struggling more than I was, and vice versa. And we helped each other to continue with that faith journey, no matter how dark the days were. And it truly got me through, and it still gets me through today. I mean, she still is there for me. And I see the bluebird, and I see the signs. And even in her passing, it was so beautiful.
And it reminded me of where I'm going to be going when this earth life is done for me. Towards the end, she had lost a lot of weight. She was obviously quite sick. When did you know that you were heading towards the end for Alex? That last year when we got the diagnosis in May of 2017, I immediately thought, okay, I'm taking her to the best facility. We're going to knock this out. She's going to get better in a month or two now that we know what the diagnosis is.
When she came back from that facility after staying there for three weeks, and she was worse off, I thought, this is going to be a lot harder than I thought. And with every treatment, every facility that we went to, I continued to see that decline. I believe that it was in December when I had that conversation with God, asking him to take her or to make her better because we couldn't live in that purgatory.
I knew then that he was going to be taking her because I just knew that all the money that we had spent, everything that I did in that last year, she wasn't getting any better. That's when we just really had to come to grips with that. And it was in January of 2018 that our priest came to our home to visit Alex and told me about this group of individuals that could come into your home and they could just pray with you. We arranged for that to happen.
Alex enjoyed that, but it was too many people. There was like five or six people. But she really liked this one couple, this husband-wife team. And so they really became our faith, our sustenance, more so than hospice. Alex really enjoyed having them come over and pray with her, and especially the gentleman. He would bring out these books. They would have these meaningful discussions on faith and redemptive suffering and all these things that she could attach her suffering to.
In those 30 days, I could see how she was leaving me, but for something greater and stronger than I ever could have imagined for her. And that was in January of February, and she passed in March. Now in 2022, you released the book, My Promise to Alex. Tell me about that promise. When Alex and I had talks and I knew that she was not going to be with us much longer, I said, I know that this is something that you always wanted to do, to start the foundation.
I said, I'm going to do that for you, and I'm going to do that in your honor because people need the help. They need the resources. They need the financial assistance that was so hard for us to get. And if I could help another family, then that's what I want to do because I know that's what Alex wanted to do. And also I wanted to write in the book and let people know how incredible she was, not only with her fight with Lyme disease, but also in her own faith journey.
Alex always wanted to be ever so present. She never took any pain medication, and she just really always wanted to show up her best self every day. So that was my promise to her that I was going to carry on her legacy. I was going to carry on her wishes. That's when we started the Alex Hudson Lyme Foundation. It's amazing what we've been able to do in the seven, eight years that she's been gone. We have developed a national Lyme curriculum with the Girl Scouts of America. We have gone out.
We have spoken to medical conferences. We have educated people. We have brought awareness. And this book alone has taken angel wings, and it's become an international bestseller. When was it after Alex had passed that you decided, I need to write this down. I need to have a record of what went on and to be able to help others? So the book really was a divine intervention. I'm not an author. I'm not one who journals. I'm a businesswoman. I write grants. I write business reports.
And this literally came to me one night where people kept asking me how Alex passed away and asking me about her journey. And especially in the Lyme community, there were so many people that reached out to me and wanting to know the types of treatment that Alex went through and just so many questions. It was getting exhausting for me to have to retell the story over and over again. But also I thought, I need to put this down in writing.
I need to get all my thoughts out, just what we went through. Even her own family didn't really understand everything that we went through. My inner circle didn't understand everything that we went through because I was trying so hard to save Alex in that last year in 2017. I didn't have time to bring them along on the journey. I sat down one night and I pulled out all of the medical books, all of the things that I'd been recording, all of her lab works and the doctor's appointments.
And I thought, that's where I can start. I can start with all of these different appointments and I had tracked her weight and all the specifics in chronological order. I just started and that kind of got me through all of the Lyme part. And then her faith journey, I started where I shared with you our story as far as Alex and I attending our first non-denominational church together.
And then just what she went through and how their prayer couple at the end really helped her to understand her suffering and how she could attach it to redemptive suffering and she could find purpose in that. I was able to put all this into writing within four months time while I was also working full-time. I think about it now, if I had to go back and rewrite this book, there's no way I could have done it.
God definitely gave the sustenance and the strength to do that back then because it was something that I know he wanted me to get out and also just for Alex to leave that legacy. As you were going back through those earlier documents and just looking back and remembering, were there moments there that God just tapped you on the shoulder with a memory that hadn't come up for a while or just something that surprised you in the process of writing that book?
Oh, there were so many times that God tapped me on the shoulder. He still continues to do, like I said, with the Bluebird scene, all of those sightings. There were several instances after Alex had passed away, one in specific where I was a single parent and her father and I had been divorced for several years. And so when we were making all of the arrangements, we were splitting the cost and each of our shares was $10,000.
I had spent over $100,000 in 2017 just trying to save Alex because most of these facilities, insurance doesn't cover it. You have to pay for it out of pocket. I had to come up with $10,000 to help with the arrangements. I didn't know where I was going to get that money. And out of the blue, somebody reached out to me that had heard of Alex's story and said their parents, who were devout Christians, heard Alex's story, felt terrible, and wanted to send me $10,000 to use however I needed that.
Right off the bat, I was like, thank you, God. And there were just other beautiful moments where he just always would provide and show up for me, even when Alex was still with us and we were going through these different facilities. There's one facility in particular where she stayed for about two or three weeks. And on the second day, Alex was undergoing treatment and I was sitting outside and just trying to collect my thoughts and thinking, is this just going to be another waste of money?
Are we not going to be able to find any treatment that's going to work for Alex? And this gentleman came up to me. He was very nice and polite and hi, how are you? And normally I'm very positive and very engaging. And I let this poor man have it. I just said, I'm not well and probably took him by surprise. Well, lo and behold, he was the chief financial officer and he was also very faith-filled. And he sat down and he prayed with me and he said, I'm going to be here every day for you.
Whenever you are struggling, look up right over there. That's where my office is. And I want you to come and I'd love to meet Alex. Let's pray together and get you through this. So for the two, three weeks that we were there, every day I went in, he prayed with me. And on the last day he brought Alex and I into his office. They basically gave us all of our money back from the treatment because they were just in awe of Alex's strength while she was there, how she was encouraging other patients.
They had never seen anybody like her before. We always think our children are very special, but there are so many moments where God just showed me that, yeah, Alex definitely was not at this world. I mean, she was just in a class of her own.
I'm wondering for people listening at the moment and maybe they have someone in their family or maybe for themselves that they have some kind of undiagnosed illness and it may not be Lyme disease for them, but what would your encouragement be to people who are finding it difficult to get a diagnosis, to be able to start treatment, to get themselves well?
My biggest thing that I tell people, and I think this is the biggest thing that helped with Alex, first of all, if it's parent, spouse, friend, whatever, believe in that person. Even if you don't have the answers, you need to believe in them because the worst thing is feeling like you are doing all this on your own. You believe in them and you say, listen, I know that something is wrong with you. I don't have the answers, but together, we are going to find the answers.
And then allowing them to have that voice and letting them be an advocate. And you help them to be that advocate because I think the moment that Alex found her voice and found that strength, it really helped her through her illness. It wasn't that she was a victim. It was she was empowering herself to figure this out, even if the doctors couldn't.
I really think it's important to always believe someone's illness and then also help them to find that voice and that strength to find the answers together. There's a lot of complicated diseases and illnesses out there, and we've seen that with COVID, post-COVID, chronic illness, these things that just don't fall into a nice and classification where here you have a disease or an illness and here's the tried and true treatment.
Unfortunately, now we're finding with a lot of these chronic illnesses that there is no tried and true treatment. Sometimes people have to try multiple treatments, helping those individuals and being a great support to them when the medical community sometimes just doesn't know how to address these complicated cases.
Has there been anyone who has come to you either through your book, the memoir, or through the Foundation and have said, that's just what we needed, this has set us on the right track, and thank you so much for what you're doing? A thousand percent. When I first started Alex's Foundation back in 2018, I had many national Lyme organizations reaching out to me.
I had a Lyme organization in New York fly out to where I was living in California, and together we joined forces and developed a $50,000 grant research project. A lot of people, a lot of organizations saw Alex's story. Many people don't die from Lyme disease, and if they do die from Lyme disease, it's by suicide. I think that's why a lot of people originally reached out to me in the Lyme community to find out how she passed.
Once they found out that it was through Lyme disease and also another illness that she developed, which was mast cell activation syndrome, they really truly wanted to help me and bring that awareness. I had different Lyme organizations collaborating with me, raising money together for research. I had many Lyme organizations reaching out to me to go and speak at their fundraising events and telling Alex's story. The Lyme community is a very, very supportive community.
We're all trying to help each other, and to this day, I still have so many different organizations reaching out to me to see how we can collaborate, and then crossing over, like I said, with the Girl Scouts. There's lots of great collaborations that can be done within this space.
I will have links to the Alex Hudson Lyme Foundation and to your memoir in the show notes at bleedingdaylight.net because I'm sure that there are people that will want to connect with you or just hear more about your story. It is an award-winning memoir. It's something that is going to help people, whatever the situation, because it is that story, not just of Alex, but also the faith story for both of you. Jody, it's been amazing to hear some of the story, to hear how you're helping people.
I just want to say thank you so much for your time today on Bleeding Daylight. Thank you so much for having me. It's been such a joy to talk to you, to meet you, and to connect with your listeners. I look forward to helping anybody out that wants to reach out to me. Thank you for listening to Bleeding Daylight. Please help us to shine more light into the darkness by sharing this episode with others. For further details and more episodes, please visit bleedingdaylight.net.