A few years ago when we were a family on welfare and using the food bank I learned that whenever someone takes the time to pay attention to me, be it in conversation, prayer or by meeting a physical, emotional, or social need, they sacrifice to do so because they could've been spending that time/money doing something else. So thank you for taking the time to not only read, but comment. Jean Vanier in his book, From Brokenness to Community says the cry of the human heart is this: "Am I important to you? Do I have any value?" Thank you for hearing my cry.
I sat in my prayer room this morning welcoming the solitude and silence. I felt embraced and hopeful. I was reminded that my job is to show up. The way God works is a mystery and today I could accept that again. I didn't need to have it all figured out. I get tripped up so easily thinking the finish line is the point. Like my friend Peter says, "one foot in front of another." Often in the quest to put that one foot in front of the other, I trip and fall, then feel ashamed that I haven't managed to keep standing. Reading these words were soothing to me this weekend:
"Though fairy tales end after ten pages, our lives do not. We are multivolume sets. In our lives, even though one episode amounts to a crash and burn, there is always another episode awaiting us, and then another. There are always more opportunities to get it right, to fashion our lives in the ways we deserve to have them. Don't waste your time hating a failure. Failure is a greater teacher than success. Listen, learn, go on."(emphasis added)
The author also writes,
"It is ...... fatuous to think that once we solve an issue it stays solved, that once we learn, we always remain conscious ever after. No, life is a great body that grows and diminishes in different areas, at different rates. When we are like a body, doing the work of new growth, wading through shit, just breathing or resting, we are very alive,.....If we could realize that the work is to keep doing the work, we would be much more....peaceful."
Part of my struggle lately is that I am still wading through this relatively new empty-nest-season in my life. I home schooled my kids for 15 years and went on quite the detours in my spiritual life during that time. I joke to only daughter that it's a wonder her and her siblings don't have spiritual whiplash. Some of those detours celebrated repression in the name of being a good wife and mother. I lost a part of me in it all. I don't mean that as a slam against homeschooling or being a stay at home mother. There were many positives to both. Any person, no matter how they spend their days, can repress that which is life giving, can drown out the voice of their own soul, in order to get the (fleeting) applause of the (invisible) crowd.
And so here I am. It feels both scary and exhilarating. The rest of my life is before me and with far less responsibility, I find myself trying to navigate a freedom I haven't had since my college days. Had I known I would develop a chronic illness before this season of my life began I might've made different choices earlier. But none of us have the wisdom of hindsight until it is just that, hindsight. I've come to the conclusion that repressing what would have breathed life into my soul has quite possibly contributed to my illness. I don't think it is a coincidence that being short of breath was one of the first symptoms. If I hadn't had the genetics that made this illness possible, I think my body would've tried to get my attention some other way. It has my attention now. Some people would read that and think I am being too hard on myself. I don't feel any guilt or shame coming to the conclusion I have come to. I feel thankful that my body would do what it had to, to get my attention. It is a gift. I am forced to pay attention to those things I could've kept silenced by busyness and noise. It doesn't mean I don't mourn what used to be because I do. So does my dearest one.
Last week he was in a(n)(unusual for him) melancholy place, saying aloud several times that he felt like someone died. We both thought his mood was about his deceased brother, who's birthday was that day. Eventually he realized the person he was mourning was me. Us. We had quite different dreams for this season of our lives. They all involved doing things that took physical ability. Dearest one walks 108 steps up from locker room to hospital floor daily. He says not one day goes by that he doesn't think of me as he walks and how I am unable to face such a challenge. Me, who used to thrill at the challenge of walking faster, pushing myself a little harder every time I exercised. We both know if I attempted those 108 steps I would be going down on a stretcher. This makes dearest one feel not only sad but angry, too.
Our dreams of walking the beach, travelling overseas, getting in the car and driving wherever our hearts desire are no longer possible. Our lives together revolve around my spoon supply. As we talked about this last week I realized anew that when one person has a chronic illness it impacts everyone around them. Dearest one has to pace himself to my pace. Part of me laughs at the irony as I type that. There were so many years when I went for a walk and was absolutely frustrated that dearest one wanted a leisurely walk and I wanted to acccomplish something instead - get my heart rate up and have an aerobic work out. These days moving from doorstep to car can get my heart rate up into that level. I dearly miss the challenge of exercising and increasing my stamina, being fit instead of fat.
Dearest one says it makes him feel like he is a single person because for him to realize his dreams of travel, etc. it will have to be alone. For even if we went together, the exploring and all that we find exciting about doing it, is impossible for me. Heck, we can't even go for a long quad ride together on our farm because if we get stranded I will be unable to walk my way out of the bush. Dearest one is seeing his dreams vanishing because what we wanted to do together holds no appeal to do solo. My physical limitations often make him feel like he is married to someone 40 years his senior.
So while we are in yet another cycle of mourning, we are also looking to the future and how to make the most of it. Validating the feelings yet not getting stuck in them. I refuse to let this illness define who I am. How exactly to navigate the reality of it is something we continually revisit. The wading through, doing the work continues. I do feel like I have my bearings again spiritually. I feel like I am able to face those things I have repressed and see what they have to teach me. I am hopeful in it all that I will befriend my feelings instead of being scared of them. I am hopeful that my mind and body will become more in sync instead of enemies.
Last week one day dearest one met the doctor who pushed the specialists until they came up with a diagnosis for me. She asked him how I was and when he told her that he thought I was worse and I thought I was better she told him that his assessment was most likely right but that my determination would get me far in life. When I was a newborn, premature infant in an incubator, my grandma came to see me. She went home and wrote in her diary that I had this look of fierce determination on my face. By the grace of God, it's still there.