As my close friends know, for the last seven years I’ve been dealing with a rare autoimmune condition called scleroderma (also known as systemic sclerosis).
Recent medical tests indicate that it is now impairing my lungs. This is a progressively debilitating and likely fatal development, and there is no known cure. I was not surprised by the latest test results, as I’ve been feeling my health deteriorate more rapidly over the last several months.
I’m posting this to be transparent and so none of my friends feel blindsided. I am totally open about what’s happening, and not bashful over it, so don’t feel you have to ignore it when you’re around me. If you have questions or want to just talk about it, feel free!
However, I also do not want it to define me. My life has been, and will continue to be, about so much more than this disease!
Marianne and I are stronger than ever in our love and devotion. We have had a flurry of emotions, but things are settling out for us. Most of all, we feel gratitude.
I’m still alive, I’m loved and God is still sovereign. We have no demands of God, nor preconditions. We are open to whatever He wants to do, one way or another, and are going to take this a day at a time. We feel the Lord’s loving grace and are so very grateful for so very much.
The next month or two are going to be a bunch of more tests, doctor visits, and the like. Already they are looking into me participating in a hopeful clinical trial, and there are exciting developments on understanding this disease that are being reported on a regular basis in the medical literature.
But I may not be as active in ministry or blogging (and there was peace in the church!) or responding to things during this intense period of testing and consultation, even though my heart is there.
In the meantime, I wrote a blog several years ago which is more true today than it was then. It’s called Sufficient Grace, and talks about the things I learned as I came to terms with this disease years ago when it first nearly killed me. At that time, many whom I had been strong for ended up deserting me when I needed them to be strong for me. But God had other plans back then, and it went into partial remission.
Like Job, God restored so much that had been lost and love found me.
Now, however, it’s back. But I want to make this clear: I don’t presume to know what the Lord intends. I am not anxious, and I don’t want others to be either.
For my close friends especially, please take the time to read my older blog so you have some context for what’s happening in my life right now. If it helps you too find sufficient grace, then I will be blessed.
Regardless of this turn in my life, my passion remains the wonderful, multifaceted and dynamic Body of Christ, and I expect I still have some life – and time – yet to impart!