See the Love

Two swans making a heart with their beaks.

So, I’ve shared my journey with frontotemporal degeneration. It’s been a hard one. I’m angry I’m going through this. I’m scared of what the future holds. I’m isolated as those closest to me struggle with how to help. I find myself feeling alone most of the time with my thoughts and fears.  But then I reached out to a friend, a former pastor, who said, “I believe there is love at the heart of things…a deep benevolence from which we come, in which we live, and to which we go. I and others will believe that on your behalf even when you find it very hard to believe.”

I find myself pondering these insightful words. I don’t FEEL the love. I don’t FEEL the support. I don’t FEEL the encouragement I so desperately need, but it is there. When we’re in the midst of pain, when all we feel is despair, it is so easy to be separated from all we need and desire. But we can’t let the pain win.

I’m in the midst of the grieving progress. Anger I get. Sadness I get. But I couldn’t get bargaining until the other night when I found myself crying out to God, “What do you want from me? What do you want me to do to stop this nightmare? Name it! Anything! Just please don’t let this be true.” I’m hitting the stages trying to get to acceptance. I can see it coming but I also know I’m not there yet. I can’t say, “Father, if you are willing, remove this cup from me, yet not my will but yours be done.” Luke 22:42. I want my will. I want the glorious future I imagined not my reality.

It’s hard enough to not feel the love now. What is it going to be like when I’m in the grip of dementia? What is it going to be like to be locked in a shell, unable to communicate? What is it going to be like to not recognize those who love me? My wife says she’ll take care of me, but she also has no idea what she’s going to have to deal with. I was a Long Term Ombudsman. I’ve seen facilities and the residents at their worst and let me tell you, the worst is scary!

But my feeling, or not feeling love, doesn’t mean it’s not there. I will rely on others to believe on my behalf. I will cling to the thought that I am being loved throughout all of this even when I don’t feel it. I rely on the air I breathe even when I don’t see it. I believe that the sun will shine again even in the midst of the dark. I will get through this scary time trusting that at the end I will know the “deep benevolence” from which I come.

Photo by Wolfgang Hasselmann on Unsplash