Only Forward
“I feel like I was in a coma,” I said, looking down. “When I woke up, I was a completely different person.”
“I guess in some ways that’s true,” my husband replied.
It’s overwhelming at times. The personality change. The change in tastes and preferences. What is the most shocking, however, is the amount of freedom and joy, and the coinciding realization that it is something that I have not known before.
I would be lying if I said it was easy. The truth has poured out of my mouth more in the past 10 months than the past 40 years. It has shocked me. Where did this come from?
I believed my life was for everyone else. I was to live for that purpose. Their peace, their happiness, their joy. And while, as a wife and mother, there is a way in which that is healthy and right, I was not living in that context at all. I absorbed. Like a sponge I soaked it up, until I could hold no more.
I wanted my illness to be neater than this. Show me the labs, give me the treatment, diagnose me. But it wasn’t. It was a tangled plate of spaghetti noodles intertwined and twisted. To separate them was pointless and would leave me about as satisfied as that solitary noodle.
I have longed to look back at times. To gaze at what I was. No, of course I no longer want to be curled up in a wheelchair. But I was nice then. I made people happy. As I poured out another recent confession that shocked my husband, I said, “I need to go back. To go back to who I used to be.”
“Not a chance,” was his reply. “That is the road to sickness and you are NEVER going back.”
In my old personality, I felt it was my duty to carry. That carried over as this illness became me. In my sick bed I counseled and encouraged women, even talking one down from a panic attack as she was so stressed about what happened not to her… but to me!
“You can’t tell people this stuff!” she hurled at me.
“You asked.” Was my steady reply.
I have received messages at 2 am from desperate women who don’t know boundaries. I encouraged one woman, often hysterical and disbelieved by her entire family, while I was living in a campground in a RV. I conducted a conference call calmly and explained to her family and friends what I had learned and seen, what I had been through. They left the call in her corner. I was too, until she lied about me to friends and attempted to pull me into her never- ending drama.
And then, a couple of years ago, something changed. I was the sickest. I could not even attempt to hold up another person. My husband was holding me up and made me promise to give everything I had to survive.
And so, I did.
I can now honestly and truly tell my husband how I feel for the first time in our 22 years of marriage. I can love more openly because I have learned that when you are selective about where you give, you can give infinitely more. I am relentlessly dedicated to the well- being of 5 persons and if your last name is not the same as mine, chances are, you didn’t make the cut.
But it’s more than that. I am looking for friends, for people that I don’t share an illness with, but whose company I truly enjoy. The mom down the street? I think I see cookies and a visit in her future.
I recently received a comment on my blog, a woman who, well- meaning as she may be, wants to “spread awareness” and offered to let me write for them. My polite as possible answer is,
“Not a chance.”
God has been gracious to me, abundantly so. And now I’m going to do something crazy with it.
I’m going to spend it. I’m going to live.
For, in truth, I missed the point. I thought the goal was just to not die. I didn’t know it was to LIVE.
I have hoarded and held tightly to my chest. I have lived in my own strength and kept the quiet turmoil within me. Now I pour out my deepest emotions and fears to my God, my husband and my dearest friend. But as the load lightens, there is room.
You will see me less and less on here. In truth, I didn’t even realize it had been a month since I had written. I have had fun instead by running and resting. Knitting and dreaming. Planning and praying.
I watch my kids come home, sweat covered and smiling from hours of playing with their friends. We make BBQ ribs and chili, a neighbor boy shared he had never had chili and will be coming over Sunday after church to enjoy it for the first time. But there is room at my table now. There is room to give. Room to love. Room to live.
And now I will fulfill my greatest and highest calling. No, not as some warrior for a new illness that may receive a color and day, eventually. Not as someone to offer snapshots of my life on instagram.
No, my calling is much higher- wife, mother, neighbor, and friend.
I just have to go live it. And live it, I shall.