Saturday, July 16, 2016

Seen


Jenny here.

Often times, some of the most important people in your life, are not determined by length of relationship or genealogy.  Sometimes, you just know when you meet someone for the first time that you will continue to know and love them forever in one way or another.  Time can pass…but you know all the sayings…it’s like nothing, or at least the essential things, has changed. 


Back to that in moment…


First the Wil updates.  He saw his internist and audio doctors last week.  He still has some hearing loss that they will continue to monitor, and continuing wax build up…so…I guess he’s off the hook, for now, when he says he can’t hear me ;)  At his internist, they added a new med to his neuropathy management cocktail—Cymbalta—which I am very familiar with in the mental health side of things, but until a friend mentioned it for pain management, I wasn’t aware it was being used a lot now for nerve pain as well.  Cross your fingers…it will be about 6 weeks of taking it before Wil can determine if it’s helping.  He will see his BMT team in August for new blood work.  Until then, it’s just keep living!  We have about 5-6 community events on our radar for the fall…making up for lost time…and we LOVE Fort Worth (and MELT ice cream!  See pic below).  Wil has decided he needs a pic of a Pokémon on our dog’s head, since he has been playing Pokémon Go (anyone else already weary of the constant discussion of this game?  I finally downloaded it because it’s entering discussions in therapy sessions…YESSSSS…so, solely for research purposes and so I can have a competent conversation with my husband now, I am playing (sigh, lol).  So, keep on the lookout for “Pokémon-on-our-dog’s-head” posts if he achieves his wish.  #LifeGoal!  I will admit, it’s an interesting concept and changes your view of the places you visit.  You almost feel like you are seeing them for the first time, and in fact, landmark wise, sometimes I am!  


SEEN.

So often, I think we miss the mark with each other, in relationships, not because we don’t HEAR each other.  No, I think we hear at least partially, but are already formulating our rebuttal by the time the other person has finished their last word.  Sure, there are times when people don’t listen at all.  Yet, more times in my own life, and witnessing relationships in my work, people hear, yet fail to SEE. 
 

Our world seems to be screaming it right now too. 


We all ask to be heard.  Isn’t that what everyone is saying right now?  Please HEAR me?  And believe me, I think we all need to do that…But do you know what is better than someone hearing you?  It’s someone holding space for you. It’s someone looking at you, warts and all, and you knowing….they agree to see the essential core.   And you really knowing and feeling…that you make sense to them.  That you are SEEN.  This.  It transcends any opinion.  It doesn’t give advice or try to solve everything.  Still…being seen achieves so much more than being heard offers most days.


These people who can see you can seem few and far between.  But they are the ones that can have you in quiet tears without saying a word.  They help calm the inner critic and you deepen your own self-acceptance, all without that being the objective.  You can’t hide your true feelings from them, and conversely, you don’t really want to either.  You don’t need to wear any armor around them because they have made it clear—they love all of you—their love is not a la carte.  They can speak gentle truths and you are better because of it.  They can just sit with you in silence and you are better because of it.  And they allow you to do the same.  Because holding space for someone has nothing to do with words, opinions, or finding common ground.  It has everything to do with seeing from the other side and letting another’s reality melt you.  The act of truly seeing someone might be the greatest form of love we can give each other.


It’s not an easy one though.  And I am no exception.  Vulnerability, as strength, was not a message I received as child.  I think I’m not alone when I say that rules, behavior and life choices were probably more highlighted than the skill of being who you really are, outside of those expectations.  I picked a career where I hold space for others with ease every day…in my own life though, I prefer my vulnerabilities staying hidden.  Don’t crack to let light in.  Stay strong.


Side note:  While this blog has been highly personal, in many ways throughout the past couple of years, there is still so much I’ve never felt OK saying.  Still so much blocked behind fear that no one wants to hear about the even drearier hard stuff, the weaker moments, the true depths, the days that don’t always end on a high note, unicorns wrapped up in hope and glitter and such.  I joke with Wil that I need a secret blog-behind-the-blog.  Those are the stories that have shaped me more than the ones I have openly written about, yet they are also the ones I feel shame about too.  The actual vulnerable, and not just the sort of vulnerable (even in my own private writing it can be hard to get there).  That’s my own work to do…but it helps, along the way, to experience someone breathing in pain with you…


So today, sitting across from a chosen sister, who refuses to let me hide, I had no choice but to be seen.  And it’s scary and amazing…all at the same time.  I sat there, not very articulate about what a gift it was to be there with her, with her total acceptance.  Not the kind of acceptance that is just about facts.  The kind of acceptance that is acknowledgement of worth, beyond any other detail than just being.  Does that make sense?  Seen-ness as a standalone offering.  I hope you have felt this at least once before yourself…because we all need more of it, and need to bestow it, in the days and weeks and years to come. 


Today broke open my soul in a way I have been needing.  So, thank you soul friend.   I’ve always known you were an amazing friend, but I hope you know what a rare person you are in this life—and what an example to the world you are to me.  I’m pretty lucky to have found you.  Luckier still, to be seen by you.


Much love.

Saturday, July 9, 2016

Safe


Jenny here.

We are moved!  Our new apartment may look like a tiny episode of Hoarders right now, but once the boxes are unpacked, some shelving installed, and the dust settles, I am sure our place will look great!  Our initial big move was the end of May, and we carefully unpacked and got major things and furniture set up pretty quickly.  Then came cleaning out the guest bedroom walk in closet and garage…the last loads coming to the apartment on June 30th.  Ugh.  I guess it’s near impossible to NOT have all those last things add up to a mix-match of boxes and things to go through later…right?  Or am I the only one?  So give us a month and we will be ready for company, curtains up and all.

Wil and I have been in a weird place lately, like as in trying to understand and tolerate each other. 

It’s almost like a first year of marriage…again.  Don’t get me wrong, our first year of marital bliss was pretty good.  And since then has become a well-oiled machine.  We just celebrated our 16th year the end of May…yet this year feels pretty new again.   That might SOUND great (fresh, new, exciting) but…do you remember your first year of marriage with all the adjustments, squabbles, figuring out each other?  We soar most days and we are a pretty darn lucky couple in a lot of respects.  Wil is alive, which is everything I could ask for, and more.  This "new again" stuff?  Sometimes I still just want the old him back.  And I think he sometimes wants the old Jenny back too…you know, the guy who was steady and quiet and reserved…and the girl who was free spirited, high energy, and more carefree.  Looking back always is easier...because I know we had a different set of issues then!


I am guessing this is a normal turn of events…and now I get why people break up through trauma and illness.  You go in one way, and out comes two different people, and sometimes in opposite directions.  The comfort and safety of knowing each other so well...not there in the same way.  What breeds safety?  Consistency, predictability...oh yeah, we've had SO much of that in the last 3 years!  Making our way through uncharted territory again, lol.

Side note:  We are nowhere near a breaking point and we have never once thought about calling it quits…but, you know, marriage is not always easy on a regular day.  You don't commit to the same person every day anyway, not if you are growing and challenging each other along the way.  But it definitely has given me lots to ponder about reliable personality traits might be.  In psychology we mostly believe these traits are constants.  Pick someone you can live with and tolerate because they won't change much.  I'm not sure I think the same way about my field anymore!  We are ever evolving and committing to that fact seems safest of all beliefs I can have right now.

Wil wants to live his “bonus time” life.  Wil wants to be foot loose and fancy free, without any ties or restraints.  The world, it’s his freaking oyster.

And I can only summarize my response to his zest as feeling like I want to bubble wrap and keep him in the closet 24/7….while I nap. 

Two completely different extremes, of the same post-cancer journey…he wants to live.  And I want him to live.  We just FEEL very different about how that should look!  I get it, and am supportive of his wants.  I’m just tired, working a lot, and still see his chronic pain and worry.  I have heard enough voices tell me…Let him be…and I do for the most part, I promise.  And he tries to understand how difficult it can be to go from fulltime caretaker back to wife.  I feel like my kid is senior in high school and I have done everything to keep them alive…and now they don’t need me to DO for them or give advice.  Sigh.  This part is hard.  The sending him out into the world, a place that this past week has proven to remind me just how dangerous that can be some days.

July 1 we reached 100 days until his 2nd stem cell anniversary. The first 100 days felt longer than the last 537 days, since then.  Overwhelming to replay.  On all accounts.  He has his next check up  on Tuesday.  We are hoping for continued good counts.  He is still on the low ends of normal ranges usually, but things have been steady.  His activity level still fluctuates day to day depending on pain.  We recently filled out a functionality report.  It had me in tears.  He is not one to share about how constant and intense his pain can be, even with me (or maybe especially with me).  Every.  Step.  Hurts.  He says “I just try to push through.” And he does it with a smile most of the time, even when exhausted.   He did take the step of getting a handicap placard and cane for the hardest days.  It’s a good thing, but hard to see “permanent disability” written out.

We keep hoping these post-chemo side effects (neuropathy and brain fog) will lessen over time.  For now, they are pretty consistent.  He is enrolled in another class though this term.  I am so proud of his hard work!  And he is also continuing Tai Chi a few times a month to help with balance and mobility, but even more so as a way to deal, emotionally and mentally, with the chronic pain. 

Safe. 

It’s a word I want so much for him.  For us.  Safe and alive.  Yet cancer, often, seems to be just one thing that could take him from me in this world of violence we live in.  So, to preserve my own well-being, I’m off FaceBook for a bit to regroup.  Working in mental health, while the world spins in chaos, means I am dealing with big issues all the time, from the therapist chair and from my cube on crisis line.  No matter where in the country trauma happens, it may come across my phone line.  And being married to a Black male, sending him out the door each day feels more and more difficult too.   When I see him breakdown about the realities of it all, I break too.  I think these traumatic events affect us a bit more than they used to, before cancer, and I am more aware of self-care early now. 

While I have so much more to say on all of that, maybe for another post, know I am alive and well…and quietly living and adapting.  Finding safety in our new little nest.  So forgive me while I take some moments away.   Wil will be online as usual.  And you can find me through our Twitter @Fightbigfight or via e-mail in the meantime.  Catch me those ways if you need me!

Much Love.


Saturday, July 2, 2016

New Milestone

Day +631:  Today is our first day of total apartment living. The house is empty. Cleaned. Our lease is done. And now on to making the new place livable (gosh those last few loads of miscellaneous add up!  Lots of organizing to do now)!  Tired doesn't even begin to describe the past few weeks. Yet mostly, I feel relief. Life. A little more managed.


Today is a new day, for sure.


And it's also 100 days until Wil's second stem cell anniversary. The length and anxiety of the first 100 days?  We still carry some of that with us even now. But we also feel the anticipation of making it to year 2. It's funny how the day we start fresh is also a day of countdown to a pretty big milestone. 

So in honor of that, to celebrate October 2016, we'll be doing Light the Night in Fort Worth. Will you join us as Wil gets to walk a survivor light?


We'd love to see you there. And if not with us physically, feel free to donate to the cause.