It’s been a big month for us. Medically we are still in limbo about a few things and have a specialist appointment this week to try and sort those things out. So, you guessed it, more procedures and scans. They are making sure to rule out any other cancers but no appointment was needed ASAP, so that's a hopeful sign so far.
Overall Wils energy is very improved. You can hear it in how often and robust his laugh has become. He's taking charge of household chores as much as he can muster. I'm so very thankful for the help. You’ll not hear him complain much, but the neuropathy is constant and still wears on him. He keeps trying though. And keeps going.
Socially, in the past few weeks, we have had friends visit from out of town, visited the Perot Museum for a second time, hosted a Walking Dead marathon at our house, saw drive-in movies, and took a trip out of town to Eureka Springs, AR for a few days with the pups along for the ride. All of these events have given us opportunities to [try and] let loose. To feel a little bit like “regular folks.” And I’ve learned it’s something I, in particular, am still working through. More than anything I want to be regular, but even these slices of normal don’t add up to regular in the way my heart can sometimes can still ache for...I love our little life....pain inevitable, struggle optional…this I know, but struggle is still what I choose sometimes as I navigate through a field of emotions. I am not always patient and kind in my moments of anxiety.
Wil doesn’t say it often, but when I admit I’m scared about having fun, out in the big scary germy world, because all of it involves risks I cannot deny, he echoes back. He gets it and feels it too. And I so appreciate our mutual candor, grouchiness, and support we have between us in these new times.
Together. We push through and there are these glorious moments when I almost forget that this is a living, breathing miracle to be here doing these things. I like the forgetting part sometimes because it’s a less emotionally charged state of being. It’s comforting to slide into the well worn regular complacency most of us live in each day...like blue jeans you’ve had for years. And it’s not a bad thing, I don’t think. It’s like a respite. Living in the moment for his mere mortal is wonderful...dreaming, anticipating the future a true blessing too. I start to see us down the road in this life, moving out of DFW, leaving the hustle and bustle of the city. It's like every vacation before cancer. Freedom.
But then I see him walking slowly, struggling with his feet, needing to take his time and watch each step since he can’t feel his feet. I watch his face and mood, trying to stay chill…with himself...he’s in pain of some sort nearly 24/7...those chemo effects still linger and may always be there (although I hope it will lesson in time). I see the acknowledgement on his face that while these sweet victories of vacation, social time, and travel are amazing, they are also reminders of what is different now...of what has been lost…of how this new body can't do everything he'd like it to....all colliding at once.
This. Watching him. It leaves me in a solemn space between inspiration and sadness and hope and heartbreak...all colliding at once.
I wanted to title this blog “Untethered.” I had broken my cell phone a few days before we left town and decided to take myself out of the land of social networks and availability until I got back and could get a new phone. It was nice to be “out of pocket” (as my Texan friends would say) for a few days.
Crossing the state lines of Texas into Oklahoma, then into Arkansas…incredible. We have not left an hour radius of UTSW in over 2 years. Despite the anxiety, our time off and trip were needed and wonderful.
Eureka Springs was all I had hoped for in a tiny, Victorian home, an artsy place in the middle of the Ozarks. I could really see myself living there if I had a job that could relocate. I have these fantasies about a little 800sq foot house away from everything. Peace. Quiet. And the Ozarks provide the most gorgeous back drop for this dream. Crooked, steep, winding streets...and trees everywhere!
Sidenote: All my life with Wil, when shopping for cars, I could never get excited about a specific model until I made sure Wil's long legs could fit into the drivers seat. And it's ok. We e always managed to compromise. These days, when we think of leaving Texas, I can never allow myself (yet) to dream about relocation without first seeing if a BMT transplant center is close enough. Can't we just pack up UTSW with us wherever our hearts lead us to go? It's still early in this new life...(Jenny, just take a breath!)...and we are not anywhere near ready to let go of supports we have here yet. But I can't lie. I looked up cost of living in NW AR. I'm smitten. So we will definitely be returning for another visit.
So we're not untethered. I've always fought that feeling of being tied down. (You should see my resume! I have loved contract work because I can come and go...to a bunch of jobs!). So I still struggle to find that same freedom space under the new rules of this life. This cancer thing...it's something you carry with you forever. It's something, at least presently, we work at gaining stamina to hold while also moving forward. Each moment feeling a little more borrowed than before you had it.
Borrowed. That's the word. That's what these snapshots, this new construction, feels like. It's what it has always been though. For all of us. And we're already, despite the fear of time being too short, despite worry that "the loan" won't be as large of a sum as we had hoped, that we continue to soak up all we can...in most ways, most of the time...to love the actuality of this new life must accompany the acknowledgment of the borrowed time we all take as we live it. If that makes sense.
For now we stay the course and plan a few more short getaways. Work on letting go. Work on being with the process.
Stay tuned. Clark's. On the loose.
Much love.
Thornecrowne Chapel
Christ of the Ozarks
Leatherwood State Park
Beaver Dam
Dinner on top of the Crescent Hotel (America’s #1 haunted hotel) while taking in the views. Can you spot Christ of the Ozarks?
During the rainy times and the evenings we cuddled up in our A-frame cabin at Pond Mountain and even managed a slight hike to the pond with the dogs. As usual Tyson was not a fan of nature and bugs. He preferred his view of the Ozarks from inside. Violet however, ran and rolled in mud.
