My husband, Jason, grew up with a self-professed hard-ass, no-nonsense father who instilled a message: men are supposed to be providers. Period. To him, that meant working long, hard hours and bringing home as much money as possible. Naturally, once Jason was of working age, he worked diligently, no matter his role. In fact, he was often admired and rewarded for his work ethic, and the sense of pride that Jason took in his hard work was honorable and adorable.
But almost two years ago, Jason started to feel “off.” He couldn’t really explain it. In typical stubborn man logic, he tried to ignore it, but I got him to agree that if the symptoms worsened or didn’t get any better in a couple of days he would make an appointment to see his doctor. Since it didn’t get any better, said appointment was scheduled.
Little did we know that our lives would be turned upside down before we even stepped foot into the doctor’s office.
On Saturday, October 5th, 2013 Jason came home from work around 6:00 pm. He went to get comfortable after a long day at work, while our son, Joey, and I fiddled around in the kitchen. That’s when we heard a loud thump: Jason had passed out completely and was lying on the ground. I tried to remain calm for my son’s sake, but it was nearly impossible. In what felt like slow motion, I picked up my phone to dial 911, when he groggily said, “no, don’t call.” I told him I had to call—unless he was able to get up and walk to the car himself. We were going to the ER—no ifs, ands, or buts.
For several days, doctors and specialists filtered in and out of the hospital room with more questions than answers. The only thing we knew for certain was that Jason had intermittent rapid heart rates escalating to over 200bpm, he was passing out, and he was feeling “off.”
Chaos ensued over the next six months, including MRIs, two 911 calls, two ambulance rides, multiple hospital stays, a stay in the ICU (after a Rapid Response Team was contacted), an electrophysiology study, stress tests (which he couldn’t complete), and more. Finally, a clinic gave him a definitive diagnosis: Inappropriate Sinus Tachycardia. Typically, it is a symptom that indicates an underlying condition or disease, but in very rare cases, such as Jason’s, it is the diagnosis.
Then, a few months after the diagnosis, and after already running through the gamut of “pharmaceutical cocktails” to figure out the best medication for his heart condition, he started having more back pain than usual. His rheumatologist ordered a blood test, which confirmed that Jason had a terrible disease: a debilitating autoimmune condition that will eventually cause his spine to fuse together.
During the past two years, many things happened that could have torn us apart. At one point, Jason had multiple episodes each day lasting anywhere from forty-five minutes to over three hours. Some days, he couldn’t get out of bed. Some days, our son wondered why his daddy didn’t want to spend time with him. (How could we have expected a five year old to understand the complexity of this diagnosis when almost all of the medical professionals we had encountered were confused?) At one point, Jason’s mentality changed and he was suddenly in a dark place questioning why this happened to our family—not him, us. He felt like he had failed us because he was stripped of what he knew and had worked toward. Because of his heart condition, he lost his job and we ultimately lost our home. We were drowning in financial, mental, emotional and physical debt. I refer to that time as the “Black Hole.”
Those hardships could easily have ripped us apart. In fact, the easy thing to do would have been to give up. I know other people who have done it. For instance, I know someone who became completely debilitated and because of this, his wife could not handle it and left him—no turning back. And now he is in assisted living. Alone.
Instead, we used our hardships as an opportunity to grow together. Because fifteen years ago, we set off on a mission: we vowed to each other that we would be together until death do us part. As we jokingly say whenever we have a disagreement,“I ain’t signin’ shit!” It’s an ongoing inside joke that is our silly way of putting our lives back in the now and reminding us of what we don’t want: a broken home. We are on a marriage mission. Forever.
And in this phase of our marriage mission, he needs me more than ever. With him unable to work, he essentially felt like his manhood was taken from him, and as his wife and life partner, I needed to step it up. And I did. I worked very hard to move up to obtain more responsibilities at my job, so that he wouldn’t have to worry about finances. I also tell him how much I love him as often as possible. And he notices: it helps give him the strength to get through.
“Strength does not come from winning,” Mahatma Gandhi said. “Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.”
After a whirlwind two years, we can say that Gandhi is right: we are stronger and closer than we ever could have imagined. Our love has endured and even blossomed into something immeasurably different and beautiful because of it all. Any insecurity and doubt that he may have had regarding our relationship dissipated, because he knows I am in it for the long haul. I am utterly and unwaveringly in love with Jason, my hero and the most amazing man I have ever met.
Can I imagine how he feels on a daily basis? Absolutely not, and it breaks my heart to even try. Is it terrifying? Yes. His spine fusing together will eventually confine him to a wheelchair and possibly damage his internal organs (unless a cure is found). Jason already has had notable difficulty playing with our son, which is hard on both of them. But we do all that we can and that is good enough. One day at a time. The most important thing is that Jason knows that I love him through it all.
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