Life on the outside

“The wound is the place where the Light enters you.”   Rumi

Jenny here. Two weeks ago tonight we were in the ER awaiting a room, three days after hearing the diagnosis, but after weeks of Wil being in constant pain. To say there wasn't enough time to process it all doesn't even give the experience justice. But I'm not melting down on the way home now and I'm eating and sleeping again. My own little steps in the journey. 

I work hard in life. I'm a mover and a shaker, always trying to get us into a better situation.  It's how we ended up at UTSW. I push and advocate for clients and, in this case, for my sweet hubby.  I put people first. I'm a helper. 

But theses days all I really want is to sit and be with Wil. My extroverted self doesn't want crowds of people or the excitement of work.   I'm happy and content in the silence of his room. But sometimes days have to go by in between being there so I can make it to my 3 jobs (part time and contract work is great until you have a life crisis and have no PTO and no FMLA).  And these days I'm learning to be humble and allow others to help us when they can. It really hit home when I met the weekend charge nurse...a former mother of a child I saw for over a year when I worked in Early Childhood Intervention. She saw me, gave me a big hug, and said "don't worry, I've got you."  What a strange shift in the helping relationship.  

I can't imagine how it is to be on a locked unit of 18 rooms 24/7.  To be poked and prodded all day long. To feel pain. To feel weak. To work up a sweat walking the hall and feel like you ran a marathon taking a shower. I'm so proud of Wil's determination. It's a swirl of emotions every day (yay! He ate jello! to seeing my strong guy lose 7lbs in one day). There is such beauty even in the brokenness because we really do have such an amazing relationship. But it's hard. 

But life on the outside is a real mixed bag too. People surprise you. Whether it's calls or gifts from those you haven't spoken to in a long time, offers of help for the caring for the puppies, or visits to Wil because I can't be there all the time...but also to the heartbreak of silence from some you'd expect to see/hear from or the uncomfortable interactions (sometimes avoidance of even eye contact) or being told the craziest things you can imagine about how I should feel or act. Some days I feel like cancer is contagious and I have it too.   I'm not sure if illness changes relationships or just reveals them. I get that it's hard to know what to do or say. I know people's lives continue on as we fight.  But even the smallest thoughtfulness or validation means so much some days. 

Wil's prognosis is hopeful. I've moved past some of the intense fear of losing him (if you know my growing up situation with my dad then you understand Wil being sick is facing my worst nightmare becoming reality) to general grieving the life we once had (this week is especially hard as today would have been our first day in MN with my family after several years).  Logically I know our lives have changed forever. Stress wise I can feel some of the challenges to daily life already (I keep thinking 3 years. 3 years. I don't usually even stay at a job 3 years!).  But really, it's just all too much to process, too many unknowns yet to plan more than just a few days or weeks at a time. 

I hope people can be patient with me as I try to figure out how to sanely balance life on the inside and outside worlds (we are expecting periodic hospital stays this whole first year. "Disabling" is how they framed the treatment). I hope I can also be patient and kind to myself (day three I'm driving home sobbing because I don't have a handle on everything yet...I'm very silly and expect too much from myself). I hope people will join with us in the long haul. Because as independent as we are, I know we can't do it alone.  

Let the light enter.