18 days until the one-year anniversary of this journey. I can’t believe it has almost been a year. I was so ready to put the second half of 2025 behind me. It came with a lot of fear, unknowns, sadness, loneliness, and anger… but also some times of peace. I was optimistic going into 2026. I was hopeful that it would be a year of healing and answers, but unfortunately, that hasn’t been the case. The first five months of 2026 have been the complete opposite of healing and answers. It has been another five months of fear, unknowns, sadness, loneliness, and anger… the list goes on. But as I get closer to the one-year mark, I think answers are in the near future.

January

The evening of January 4th, I had a big episode that mimicked another stroke. It started around 11:30 p.m. There were no signs that it was going to happen; it came on all of a sudden. This one was different from the others. Usually, only my right side is affected, but this time it was my entire body. My entire body was paralyzed. I could move my head around, but I couldn’t feel, lift, or move my arms and legs. During this episode, my eyes were shut, and I couldn’t open them. I also couldn’t speak or make any noises to get Peter’s attention.

He was asleep next to me, and I couldn’t get his attention at all because I couldn’t move or speak. It was terrifying. I honestly felt like I was going to die. I think I lay there for about 30–40 minutes before I “came out of it.” What I mean by that is that I came back to consciousness. I wasn’t exactly unconscious because I could hear everything around me, but I was able to open my eyes and speak… still unable to move my body. In my head, I was screaming for Peter, but nothing was coming out. It was like an out-of-body experience. Once I came out of it, I opened my eyes and yelled at Peter to wake up. He got up and came to my side of the bed to sit with me. I told him what had happened as quickly as I could because I then went back to my “unconscious state.” I went in and out of those episodes until around 1:30 a.m. My face would droop, switching between the right and left sides, I would stare off into space, or my eyes would shut, and my body was paralyzed the entire time. It was absolutely terrifying. After about 10 minutes without episodes, my body started to come out of the paralysis. Peter helped me get my legs and arms moving again. I was paralyzed for a total of two hours before I was able to start moving my body again. Not only do these episodes affect my body while they are happening, but the effects usually carry into the next day. The next day, I was exhausted, and my body felt extremely weak and heavy. It was difficult to go up and down the stairs at home. The crazy thing is that my Oura ring (I got it in November to see if it could catch anything) told me that morning that my body was experiencing major signs of strain. I thought it was interesting that it was able to detect how much my body had been through, considering the night I had before. You’d think January ends here, but it is only the beginning.

On January 7th, I had an episode at work for the first time. I had felt off that morning and suspected that something was going to happen. This was the first time I had signs before an episode occurred. We had chapel that morning at school, and I felt extremely dizzy and just not like myself. I went on with my morning, thinking I hadn’t eaten enough breakfast or that my sugar was low. As the morning went on, I took my class to play in the gym. In there, I became very dizzy, and my body was drenched in sweat. My mouth started drooping, and I was staring off into space. Other teachers were trying to talk to me, and I couldn’t respond. I was able to sit down, and then I realized this wasn’t good and that I needed someone to stay with me. My dad came to the rescue. This was the first time he had seen me in an episode, and I think it really scared him. He didn’t realize how serious my condition was and kept saying, “We need answers NOW.” So the next four months were spent seeking answers and not giving up.

February

On February 8th, I had another big episode resulting in full-body paralysis. I was rocking Nora, my one-year-old, to sleep in her room when all of a sudden my whole body went numb (legs, feet, toes, hands, and arms), and I couldn’t move or speak, and I was experiencing facial numbness and drooping as well. I was terrified because, again, I couldn’t yell for Peter. I was stuck in her rocking chair for probably 30–40 minutes before I was finally able to yell for Peter. He’s lucky he came when he did, because Nora was about to fall out of my arms. He took Nora, and I continued going in and out of episodes for another 20 minutes, still fully paralyzed. Once they had stopped, Peter had to drag me back to our bedroom because I couldn’t walk. He had to help me get my body moving again.

The next day, I was exhausted and weak. Luckily, I had a follow-up appointment scheduled with my IU neurologist in Lafayette. See ing my IU neurologist was basically a waste of my time, as he ultimately said again, “I don’t know. I’m not seeing anything. I don’t have any answers.” However, he started me on an anti-seizure/migraine medication to see if it helps, even though my brain has not shown seizure activity on past EEG tests. He said that if it helps, then we have an answer. He also said that he doesn’t think my condition is neurological, but then shows me my MRIs from August and December showing at least 8–10 MORE lesions on my brain. You can tell that a few of them look bigger, but he said it’s hard to tell because of the way the MRI test slices your brain during the exam. So from a neurological standpoint, it isn’t neurological, or so he says. He mentioned the Mayo Clinic because he wants me to see the best of the best. It looks like that will be in my future. I just don’t know when.

March

March was essentially spent playing phone tag between IU Health Medical Records and the Mayo Clinic in Jacksonville, Florida. I requested that my medical records be sent to Mayo on March 17th. Every week, I called Mayo to check whether they had received them, and the answer was always no. Whenever I spoke with Medical Records, they assured me they were working on it. The last time I spoke with them was April 9th, when I emphasized that my records needed to be sent as soon as possible because my case was becoming urgent. Mayo Clinic finally received my records on April 22nd—more than a month after I had requested they be sent. After all that effort, they ultimately rejected my case, stating, “We don’t have any additional information to offer.” Okay then. Moving on.

April

April is when things really started to pick up. I would love to type out and explain every single episode I had in April, but it would take way too long. I do have the dates of each episode, which I will list below. April was hard—probably the hardest month of the year. I had multiple episodes that month. More than in all of 2025 combined—in just one month! I had eight episodes. Yes, you read that right. EIGHT EPISODES…

• April 1st
• April 6th
• April 7th
• April 9th
• April 22nd
• April 23rd
• April 24th
• April 27th

I was starting to feel very hopeless and that this would be my life forever. At this point, none of my doctors knew what was going on. At all. Approaching the one-year anniversary of my condition, I honestly just wanted to be done. Now, I’m going to be very vulnerable here. I had told Peter sometime in April during one of my episodes that I wanted the next one to take me. I wanted to die because I didn’t think I could do it anymore. Obviously, that isn’t true, but in that moment, I was exhausted from dealing with it. All those episodes in April had really taken a toll on me, not only physically but mentally and emotionally as well. Those thoughts of not wanting to be here are very serious to me. Even though I didn’t mean it, they are still concerning. I made sure to check in with my primary care provider to see if a medication change would help. I had a few extra sessions with my therapist, who truly listens and cares. And I, of course, leaned on my village more than ever.

Throughout all of those episodes, I had an MRI on April 14th of my thoracic and cervical spine. The results of that MRI were pretty severe so I was referred to a neurosurgeon. At this point I was afraid I would be having spinal surgery based off of my results and what Dr. Google AI told me. Going into the neurosurgeon appointment I was ready to be told I’d have to have surgery, but I was wrong.

May

May was a blur. Thinking back, I can’t even remember half of what happened. All I know it that I had some appointments, tests, more episodes, and trying to survive the last month of school in kindergarten! Anyway, on May 7th, I met with a neurosurgeon. I was able to see the scans from my MRI, and it was pretty cool to see. The concerning part was the thoracic portion of my spine. From T7–T10, I had extrusions and protrusions (slipped discs) that were severely deforming my spine. I had learned this from reading my report in April, but I obviously wanted to hear what the neurosurgeon had to say. He told me that the area of my spine did not look as concerning as the report made it seem. Yes, there were some deformities, but nothing too severe to cause my symptoms. So Dr. Google made me anxious for no reason. Haha. Essentially, this meant that I did NOT need surgery, which was amazing to hear. He then went on to talk about how the last test I could do was an angiogram of the head and neck. An angiogram is a diagnostic imaging procedure that uses X-rays, CT scans, or MRIs to visualize the inside of blood vessels and organs. Doctors use it to detect blockages, narrowing, aneurysms (bulges), or other abnormalities in the arteries and veins. I had this done on May 12th, and everything came back normal! I had a follow-up scheduled with the neurosurgeon, which was today, June 1st.

June

Here we are—the dreaded month of June. I used to love June, but now I am just terrified of what the month could bring. Looking back on where I was a year ago is crazy to me. We had just gotten to Florida to spend the week with my brother and sister-in-law. June 2nd was when our world began to crumble. Peter’s dad was put on hospice. We had just driven 14 hours to Florida and had to turn right back around the next morning to spend the last few days with Jerry. We were able to be surrounded by Peter’s family, but we unfortunately lost him on June 12th. We had a beautiful funeral for him on Father’s Day, June 15th. June 19th was when my medical journey started, and I spent two nights in the hospital, just to end up back in the ER the same day I was released. On June 24th, we were in a very serious car accident that my kids, my dad, and I were very lucky to walk away from. And now, almost a year later, I might be getting some answers.

During my follow-up today with my neurosurgeon, he told me he had taken a second look at my MRI. Instead of discussing the thoracic part of my spine, we looked at the cervical part. I have degenerative disc disease and bulging in my C5–C6 vertebrae on my right side. I also have most, if not all, of my numbness and muscle weakness on my right side. He said this usually causes pain to shoot down from the neck to the fingertips. However, I am not experiencing that, but I am experiencing tingling in that spot. He did say that my body could just be reacting in a different way. and it could be my body’s stress trigger in response to a painful radiculopathy. I know—that’s a big word! Cervical radiculopathy, or a “pinched nerve” in the neck, happens when a nerve root becomes compressed or inflamed as it exits the cervical spine. This can cause radiating pain, numbness, tingling, or muscle weakness that travels from the neck into the shoulder, arm, or hand. Because my C5–C6 stenosis is severe, he recommended a right-sided cervical selective nerve root block. A cervical selective nerve root block (SNRB) is an outpatient procedure in which anesthetic and steroid medication are injected around a specific spinal nerve in the neck. If this were to significantly help me and decrease my symptoms, or not have any symptoms at all, then we would consider a ACDF of the C5-C6. ACDF C5-6 stands for Anterior Cervical Discectomy and Fusion at the C5 and C6 level. It is a surgical procedure performed on the neck to relieve pain and pressure on the spinal cord or nerve roots. I guess surgery is on the table again, but we won’t know for sure until we see how my body reacts to the SNRB. It certainly doesn’t sound fun to have a needle put into my neck, but if it gives me an answer, then I’ll do it.

Moving Forward

So this is where I am right now. I’m considering moving forward with the SNRB procedure and hoping and praying it brings relief. I’m ready to put this chapter behind me so I can truly move forward with my life. I’m exhausted from living in constant fear of what might happen next. At the same time, this journey has shown me just how many people surround me with love and care. I can’t fully express how grateful I am to have such incredible people in my life. I truly would not have made it this far without my family and friends… MY VILLAGE.

If you have read this far, THANK YOU. I know it was a lot, but every detail of my story matters. Please continue to pray or send good vibes my way. I love you all so so much.

xoxo – Sara