He is building a palace

The weather was perfect and I felt well enough for an outing so Jordy and I decided to take a little field trip. We dropped SalTak off at Camp Bow Wow and drove an hour and half up the road to see Fallingwater, the famous house designed by Frank Lloyd Wright, built over a series of waterfalls in the middle of nowhere Pennsylvania. I decided to post tonight because I fear that if I wait one moment longer I’ll get overwhelmed by all the things I want to share and never post anything at all. I’m bursting at the seams to convey to the universe what the past three weeks have been like for me and simultaneously have no desire to talk about it at all because I know I’ll just get frustrated with myself for not articulating it well enough to really allow people to understand. It’s a fruitless pursuit! So, in order to just break the ice and my silence, I’d like to begin this post by talking about Frank Lloyd Wright and this house he designed. The grounds, the interior, the furnishings, the colors, the smells, the sounds of the giant waterfall under your feet in the living room- all of it was completely mesmerizing. It delighted all my senses and since I feel like I’m living in an entirely new body, you can imagine how thrilling this was for me. If you read my first post, you’ll know that I now own a vintage pair of leather slippers from Kaufmann’s, a famous Pittsburgh department store that no longer exists. Well, today we learned this house was commissioned by the uber wealthy Kaufmann family in 1936 and marks the turning point in Wright’s career after it graced the cover of Time Magazine upon its completion. J and I both agreed that it would be worth a flight to Pittsburgh and an hour and a half drive outside of the city just to visit this place. I won’t bore you with the details of each room, each well appointed fireplace, each window and door, but I assure you it was all just a feast for the eyes and we vowed to begin sketching ideas for our one-day house the moment we walked out.

Speaking of walking, I am still at a snail’s pace and my posture looks like that of an 80 year old’s with severe osteoporosis. I have to wear this binder thing around my core (think girdle) anytime I’m active and it makes for a very awkward-looking gait. The nerves in my stomach are starting to come back online, which is both good and bad, but the severe internal pain is finally waining. I think my scar is very cool as I have always been a fan of scars. I’m an emotional mess 99% of the time thanks to the heavy dose of steroids and immunosuppressants I’m on and if you need an example of how bad it is, you can ask Jordy about the amount of tears I shed when I watched Rory tell her college boyfriend goodbye when he moved to London for a year (Gilmore Girls is my guilty pleasure in recovery). I cannot even bear to watch any of the videos people took of me after the surgery…not because of how pathetic I looked but because of how powerful they are for me. Even looking at pictures of things from those first few days sends me into complete hysterics. I was warned by some people who had gone before me in the liver transplant world that this would be a highly emotional experience, but I had no idea it would be quite so intense. I looked at that waterfall today and have never felt so connected to something in nature. The Prograff has balanced out for the most part. Those were some tough days. For a while there, my arms were my biggest complaint. It felt like they’d been run over by 18 wheelers. I’ve still got two tubes coming out of my abdomen but I can finally take showers without having to get Saran Wrapped first. I love UPMC with all of my heart and don’t even mind going back for my follow up appointments. This is coming from someone who has legitimate PTSD and hates hospitals with a fiery passion.

I have a lot of healing to do and it has been harder than I even imagined it would be at times. I have gotten frustrated and bitter and short tempered and sad. I have worried extensively about the idea of having to take so much medicine to stay alive and hate the idea of having to deal with the side effects of these medications for the rest of my life. But then I think about those pictures of my old liver, Creature #7, and things come back into focus. And I think about how I’m alive because of Vince. I think about how 60% of his perfectly beautiful liver is now all hooked up and WORKING inside of my body. And I think about how miraculous and wonderful this whole thing has been and how the Lord has been preparing me for this my entire life. I think about how he was preparing Jordy’s heart for this long before I even met him. I do not know why or how or what this is for and fully understand that I might never know this side of Glory, but I know it is not all for naught. In two years I have faced two major physical, psychological and spiritual blows. The first, losing June, made me so weak and so fearful that I worried I would not have the strength to endure another battle in my body. I felt so ill equipped going into this. I didn’t have any fight left in me. What I learned, much to my surprise and delight, is that I didn’t need any fight for this battle. It was fine to be weak. All I had to do was accept the gift of life from someone who was giving it to me. I just had to be open to taking it, even if it caused me pain. Fighting was the exact opposite thing my body needed to do. Remember, I’m on enough immunosuppressants to shut down the disease fighting ability of a herd of lions right now. It took me a while to understand why the doctors need my immune system to STOP working, so let me explain. Our bodies know when something foreign has invaded it. Our immune systems are smart and go after anything that doesn’t belong with the intention of killing it so it doesn’t kill us. This is usually a wonderful thing. In the case of transplants, it’s not such a good thing. We need my immune system to stop working so that it won’t see Vince’s liver as a threat. We need Vince’s liver to enter my body in peace- no fighting, no attacks. This entire physical process has been about the need for my body to fully and completely surrender. Even if it hurts every cell in my body and causes me to cry waterfalls of tears. Even if it meant I had to be cut open and torn apart. The only thing I’ve had to ask my body to do is say thank you, and allow the new liver to do its thing, knowing that it would bring me new life, knowing that it was purposeful even when it hurt. Easier said than done, I assure you, but I love meditating on this and find it far more applicable to my life and faith than anything that promotes being strong. It feels far more authentic for me to admit that I am weaker than ever but better for it than to lie and say I got through this by fighting some kind of good fight.

With that in mind, I’d like to end with a couple of verses that have scrolled across my brain many, many times in the past few weeks:

2 Corinthians 12:9-10

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

And I would be remiss to not also include one of my favorite quotes from C.S. Lewis after today’s house tour:

“Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make any sense. What on earth is He up to? The explanation is that He is building quite a different house from the one you thought of – throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were being made into a decent little cottage: but He is building a palace. He intends to come and live in it Himself.”

(C. S. Lewis, Mere Christianity, New York: MacMillan Co., 1960, p. 160)