"The Unknown Path Ahead" by Elena Goodrow
No matter where you live or where you come from, we are all familiar with the fear that comes from an unknown future. Haunted by life expectations and insurance deductibles, sometimes all we can do is succumb to the lack of control. The past couple of days this lack of control has really sunk in for me, and many others that live with health issues in the United States.
I try to educate myself so I can be prepared for what may be around the corner, but the legal jargon gives me a headache after too much reading. I try to imagine what may happen if I suddenly lose my health insurance. Do I have enough medication on hand to last me a month? Two months? Do I have enough funds in my bank account if I get a bill for my pulmozyme? The internet tells me changes will not happen immediately, but I have a hard time believing that if things continue developing the way they have been. I’m terrified for the future of my community and my country. I’m horrified by the pain and sorrow that is inflicted on people every day that deserve so much better. I try not to wallow in these feelings because all it does it make me feel more stressed. All we can do is accept the lack of control. We do what we can to fight and encourage change, and then we breathe deeply. We prepare for the path ahead. We embrace those around us and continue to spread love.
When I started Trikafta my doctor told me I could live a “normal” life span. I had been preparing for death my entire life (only 15 years) up until that point. I was so scared, all of the sudden it felt like I had so much life ahead of me. I didn’t have to rush to get all my dreams accomplished as quickly as possible, I could simply breathe and find joy in the small things. With all expectations for my life shattered, I didn’t know what I was going to do with all this extra time! Did I have to start planning for retirement now? That sounds complicated. The fear of the unknown and lack of control plagued me. Somehow in that moment, the idea of a long life seemed unimaginable compared to the short life I had been envisioning. However, once I got my acclimated to this idea it didn’t seem as scary. I started feeling so thankful for each day, and so thankful that I had many days ahead of me. I started breathing in each moment so deeply and intentionally.
The fear of the unknown and lack of control I am feeling now reminds me a lot of that time in my life. The state of my country is horrifying and uncontrollable, but I remind myself to be intentional and embrace any change that is on the road ahead. I can fight, I can be a light for others, and I can be a light for myself. My heart hurts for those that are suffering and for those that may be about to lose everything. Those that are losing all of their support, along with healthcare. Tomorrow, it could be me. Who knows what will happen, but let us shine on and breathe through it all.