From Hawaii to hospital

Upon graduating high school, I married the love of my life, my high school sweetheart, Diana, and enlisted in the United States Navy. After over 30 years of serving in the Navy, moving around the world, and building a beautiful family with Diana, we decided it was time to retire and move to our happy place; Hawaii.

While I was stationed in Germany in June of 2019, Diana and I were getting ready to make our move to Hawaii when I suddenly felt a severe burning sensation in my back and legs. As someone who served in the Navy, I’ve felt pain before, but this felt different. I couldn’t move yet couldn’t sit still. All I knew was that I was in excruciating pain and I needed to go to the hospital.

When I finally got to the hospital, we quickly realized that I was in worse condition than we anticipated. My organs were shutting down, blood was pooling in my chest, and I needed to be transported to another hospital about an hour and a half away.

Shortly after arrival, I was placed in the intensive care unit (ICU) and put into an induced coma. According to my doctors, I only had a 10 percent chance of coming out of a coma, and if I did, my chances of survival were slim. It breaks my heart to know my family flew out to Germany from the United States to say their goodbyes. It breaks my heart to know my wife received my wedding ring in a cup at the hospital. It breaks my heart that this was almost their new reality.

Finally, after 14 days of being in the ICU, I was stable enough to be brought out of a coma. Before I knew it, I was being transported back to the United States via the MedEvac. After landing safely at Andrews Air Force Base in Maryland, I was then taken to Walter Reed’s Wounded Warrior Ward for further treatment. But my journey was far from over.   

“Our love story isn’t over yet”

By August of 2019, I was released from the hospital. I didn’t have a diagnosis, I didn’t have function in my legs, but I had my family and I had my faith. Without those two things, I would have never made it through. People around the world lit candles for us at different cathedrals – it was amazing to see the outpouring of support that my family and I received. It was humbling to hear my wife tell me that our love story isn’t over yet.

Upon being released from the hospital, I had to partake in outpatient therapy, daily physical therapy, treatments for traumatic brain injuries and monthly plasma infusions. While I lost 90% of the ability to do things that made me a man, like mow the lawn, repair a fence, and drive a car, I gained even more appreciation and admiration for Diana, who became my 24/7 caregiver.

My road to recovery isn’t easy. It’s something I work on every day. If I can do something for my wife to make life easier, I am going to do it. This disease made me realize I gave 30 years to the service and I lost function in my legs for it. There’s a reason why I do it – and it’s not for me. I did this for my country and for my family. As proud as I am to have served this country, knowing I still didn’t have a proper diagnosis was weighing on me.

It wasn’t until last year, when I finally met a doctor who was able to diagnose me. Because of him, I learned that I had idiopathic systemic capillary leak syndrome, also known as Clarkson’s Syndrome. Clarkson’s Syndrome is a rare disorder characterized by repeated flares of massive leakage of plasma from blood vessels into neighboring body cavities and muscles. This results in a sharp drop in blood pressure that, if not treated, can lead to organ failure and death.

“We can’t learn without sharing”

Someone once asked me “if you were overseas with your troop, would you quit?” and without any hesitation, I firmly answered “no.” I am an open book – I will tell anyone anything, because we can’t learn without sharing. After all these years, I continue to grow and learn.

Being part of veteran’s groups helps, and I am trying to find new ways to make connections and foster relationships. My advice is to ask for help, don’t quit and stay positive.

Since my diagnosis, I stay connected to the community by managing my Clarkson’s Disease Instagram account. I encourage you to check it out and to share your story: @clarksonsdiseaseawareness.

Today, I am doing well. My family is happy and healthy, and my faith is stronger than ever. I continue to send prayers and love to all my fellow chronic warriors and friends. Stay strong.

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