While I was scrolling through my Facebook feed this morning when I rolled out of bed, I read this incredibly true and thoughtful statement from the Entyvio forum I’m part of:
#IBDAwareness Being ok with the lack of long term compassion makes this disease more tolerable. Healthy people want a beginning, middle(struggle) and ending to your story. You learn who you can talk to, and really you stop trying to make people understand.
I know exactly what she is feeling. Chronic disease, believe it or not, can be forever. Clement’s flare-up has been over a year now, and we’ve been incredibly fortunate for all the people that care for us and pray for us from all over the world. But not everyone seems to understand the complexity of chronic disease, that sometimes, there is no healing. There may be relief for some (and of course there’s also varying degrees of illness), and some may not even have any relief. Some people may have a really mild version of colitis, and get treated so easily with oral medication. Some may take biologics and get better. And some, have to get surgery. I remember asking that question on the forum, that how long have they had a flare-up for. And some people have never even experienced remission for 10, 20, 30 years that they’ve had this disease. I am grateful for the 3 years that we had. So, questions like, “He’s still sick?”, or “What do you mean the medicine is slowly working?” “Have you tried this…?” get thrown at us at times, and I think at some point people get tired of praying and waiting long term. It falls out of their realm of care, and their once passionate compassion of 200% has dropped below zero. It seems like, people are just used to the acute disease story where you have a beginning of your disease, struggle struggle struggle treatment treatment treatment, and voila! You are cured! Short term compassion is perfect for that. Makes for a great story, a miracle.
But with this journey, I’ve come to realize that it is not about the miracle that we’re hoping for. This miracle may not even come. It is about how we respond to this as we move forward. It’s perhaps, a different of miracle, a different kind of transformation. Over these past couple of months, we’ve kind of settled into a routine, kind of trudging along. But also, a lot of treasuring. Clement’s cheerful heart has been really encouraging. Instead of going on walks, we’ve been catching up on some movies and shows. We’ve been talking more, and doing things we can do instead of focusing on what we can’t. Reinventing some food choices, and trying new recipes. He’s been well enough to help me out in my little business ventures. Taking more intentional time to rest, and naps. And really enjoying these moments. It truly makes the waiting less painful, and sparks thankfulness in every second. And also, it makes me worry less.
8 But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. 9 The Lord is not slow in keeping his promise,as some understand slowness. Instead he is patient with you, not wanting anyone to perish, but everyone to come to repentance. (2 Peter 3:8-9)
This verse shot an arrow through my heart when I read it a couple of days ago. The Lord is not slow in keeping his promise,as some understand slowness. I’m clearly one of those “some”. But I’m glad that God is patient with us as we learn all these life lessons I think I will never have thought I would. Patience is not my virtue. Slowness is not a characteristic I would describe myself with. In this time of “slowness”, I am learning more about my husband and myself, and it also is forcing me to reflect my next life direction.
Part of that reflection has led me to my big news. I gave my resignation letter last week to my manager, so by the new year I will officially be a full-time entrepreneur. I am so thankful to God for giving me this opportunity to find what I love doing, and to pursue it as a career. I know it can take some people a lifetime to find that, and I am so blessed to be doing it now. It probably sounds crazy that I’m doing this in the midst of all these things that are happening, but in all this I know that God will provide. I’m so glad to have Clement back me up here (and be my perpetual shipping go-to) and that I’m not alone in this venture. And this time of “slowness” has truly been good to me, helping me to rely on God on every single step, and also to stop and smell the roses. I’ve recently taken up pottery at a local ceramic studio, and I’ll tell you more when I actually make something – next time. Since pottery is yet another hobby that takes… forever.