Road to Tennessee: Part 6

Harmonious Tidal

Systematic Sclerosis is a complicated disease. Its prognosis is typically 5-10 years depending on the severity. What we’ve come to discover with all this is numbers don’t really mean anything. It’s such an unknown disease, the “how” of it all isn’t really understood. This leaves both of us in a constant wave moving from “we’re fine” to “are we out of time?”. It’s not easy coping with these feelings, but it’s even more challenging to sync the waves.

When we were first given the diagnosis my wife had already ridden the wave significantly. She’d been one step ahead of the doctors through the entire process, but even though I’d heard her mention Systematic Sclerosis I was only just getting on the wave when the doctor suggested the diagnosis. I was still only just catching it when the next doctor started her on extreme medicines. When I look back on those times, it seems like a fog. I understood what was happening but it seemed like it had come on quickly. In reality we’d spend years with this and as a bystander I had simply been ignorant of its constant attacking.

This is the trouble with the waves of emotion. When you’re synced up emotionally it can cause issues. You’re both falling into despair, lashing out in anger with the stress of wonder. On the other side, you both let go of your needs because you’re sure everything is going to be alright. The benefits of riding the waves together, you feel affirmed in your partner. You feel like they understand your concerns and struggles. You feel like your plans of action work together for both your benefit. It can be wonderful, but it can also be detrimental.

When your waves are out of sync a new batch of problems arise. Suddenly you feel like you’re the only one taking the problem seriously. You wonder if they’ve given up. You wonder if they feel like their life will be better without you, or that you just aren’t worth holding on for. You feel like you’re making every effort to move forward to a position that will help, only to be met with a mediocre response. There are still positives to riding the opposite side of the wave. You are able to reach down and pull each other out. You’re able to remind each other of the importance of moving forward while also seeing both sides of each decision.

It is challenging to ride the waves, because you have to learn how to positively impact each other no matter what side of the wave you’re riding. Our relationship feels like a guitar constantly shifting out of tune. Each day we are tuning different strings only to realize another string is out of tune. That’s what love really is though, the constant tuning of our harmony. Challenges make it harder to keep everything in tune, but keeping everything in tune is not the challenge. Keeping everything in tune is a joy.

I love my wife. This challenge has drawn us closer together with each discovery. She is strong. She is wise. She is determined. She works everyday to find answers. She works everyday through pain and emotional struggles. At the end of the day, after every challenge she faces, after every pain, sorrow, fear, and anger, she still looks back on her day and wonders what she could do to be better, no matter how much I try and convince her she’s already wonderful. Together we ride these waves and together we stay in tune.