What really matters.

 I had a really awesome day today.  While I feel somewhat guilty saying that - because Kim had a fairly crappy day today Ataxia-wise - mine was awesome.  I spent the morning with my friend Ady. Ady and I meet every couple of weeks on a Saturday or Sunday morning and just talk life.  We entered into this as a “mentoring” relationship but in all truthfulness I’m fairly certain that I get much more out of the relationship than she does.  We talk life and struggles and how we see God working and how we don’t see God working and get frustrated or angry or confused and then come back a few weeks later with beautiful insight and new found faith and hope.

  Today what stuck with me was our conversation about the work and action of God, the Holy Spirit and Jesus himself in the here and now.  I shared how I just don’t get people who hang their hat on the whole, “my hope is in heaven where there will be no more pain and no more tears” line.  Don’t get me wrong, I believe that life after this one will be amazing living in the presence of Christ himself where there won’t be all this BS that we have to put up with here, but I’m sorry, I LIVE IN THIS WORLD - NOT THAT ONE.  While it’s a beautiful thing to look forward to in the future, I need the kingdom of God that’s at work right here and right now and I truly believe it exists and is very, very real.  If I didn’t I couldn’t do this whole pastoring song and dance.

  I shared with Ady that one of the main reasons I went into ministry was because I couldn’t take all the churchy platitudes that give wonderful lip service to the saving power of God but you never hear about the real-life work and presence of God in the here and now.  Or just have nice neat and tidy answers for everything under the sun. I can’t deal with that - and I know lots of people who haven’t yet experienced the real-life presence of Jesus who can’t deal with it either.  Sorry, but my feet are firmly planted in the present-day here and now of this microwave world that wants everything now and needs to see to believe (yet yearns for the mystery and mystical as well).  Promises of the future and scripture-quoting don’t cut it and truthfully can really piss me off sometimes.

  I’m so grateful that I was gifted a faith that has really never doubted the existence of God.  That’s always been a given for me.  But while I always knew God was real and God was there, I didn’t always see evidence of his existence or even God’s presence, and I definitely didn’t always understand or even agree with the way he chose to go about things, the circumstances God allowed to happen, the people God allowed to return to him much earlier than I would have chosen.  This gift has strengthened me to move forward in faith when I had no logical or rational reason to do so.  (Thank you Jesus that you don’t work by logic or rationality either!)

  This takes me to the second part of my day (after returning from my time with Ady and spending most of the afternoon in leisurely reading) my friends Dave and Karen came and picked me and my two pans of brownies up and we went to the Four Winds Coffee Shop where we served a dinner of chili, salad, chips and a brownie to 50+ college students who came to pick up a free meal, this week prepared and handed out by our small group.  Dave and Karen then took me out for an early birthday dinner and we continued my discussion from this morning recounting the ways we have witnessed the kingdom of God at work in THIS world and experienced and grace and peace of his presence in numerous difficult times and through the loss of amazing people (Steve Gammill, one of many).  We have a long history together and our friendship is one that has spanned over thirty years.  We’ve grown in Christ together through Bible study groups sharing losses and struggles helping each other, growing in knowledge and trying to figure out how to live this life that God desires for us (and sometimes failing miserably).  We’ve each been on both the receiving end and the giving end throughout our friendship and it’s a beautiful dance of seeing God work in and through and amidst all we’ve lived both independently and together in community.  I don’t know what I would do without their love and friendship.  We all realize how rare it is, this kind of intimacy and interdependent friendship that comes from journeying together.  It’s a precious gift.

  Days like today help me to make it through days and sometimes weeks of life that can be hard, more alone than together, and full of more giving than receiving. Days like today get me re-centered and I’m reminded that “it’s not about me,” and that’s ok and as it should be.  Days like today help me remember that God really does know what he’s doing and that I can trust him - particularly when I can’t see or don’t understand what’s going on or what’s next.  Days like today give me hope, like the little leaves of the grape hyacinths pushing their way up through the rocky, hard dirt next the the driveway that should in no way have survived in the nutrient and moisture-lacking clay they are planted in.  That kind of hope and tenacity and resilience are what days like today give me.  

  Thank you God for sending me these people.  People I can be who I am with.  People who can be who they are with me.  People who point me to You and remind me that life is so much more than one day and yet all about one day.  Tomorrow will probably be different and possibly more difficult or challenging, but today I am thankful and seeing Your face, Lord.  I’ll take it. 

  Thanks for reading.  ~Sally

A Journey of Grief

  It’s been two and half years since we moved back to Grand Junction.  As I wrote before, the summer we moved back Kim lost almost thirty pounds and then a month after moving he was hospitalized with a colitis flare up.  We’ve always thought more was going on but testing showed some gastritis and the colitis, but not much else.  He’ll have one day where his stomach is fine and totally normal and another day when he’ll wake up puking. There’s no rhyme or reason and it’s so frustrating and just hard to do anything, plan anything...and Kim gets anxious about things flaring up if he was to go anywhere for any length of time, so he just doesn’t except for a few drive up stops or his friend Dave’s.

  As we entered 2019 and saw the neurological symptoms appear (imbalance and occasional slurred speech) we went to a local neurologist who sent Kim to Denver to UCHealth for more specific testing. He wasn’t able to get in until April and then back again in May.  A lot of really ominous diseases and disorders were ruled out and basically we landed on a neurological disorder called Spino cerebellar ataxia.  It’s a disorder somewhat similar to MS and is progressive.  It’s expensive to get genetically tested and there’s no guarantee that your particular type will be identified or even show up - plus there’s no real treatment so the only reason you’re doing it is to be able to officially say, “I have THIS type of SCA.”

  As time has passed Kim’s imbalance has worsened, his speech has worsened, and depending on the day he’s affected cognitively as well - usually just not tracking with things.  He has better days and worse days.  Sometimes the stomach stuff adds to the ataxia, sometimes not.  Life has changed a lot for us both.

  Add to this my having to quit driving altogether due to the progressive bullseye macular degeneration that I have and we can both say that 2019 was a pretty shitty year.  

  We’ve both been grieving...a lot...and I think we’re just now beginning to come out of it.  While the rest of the country started grieving their loss of life as they knew it in 2020, our grief had been well underway by the time the pandemic hit.  So life didn’t change a lot for us when COVID took over.  That’s probably insightful into how very exciting our lives are, lol!

  While I don’t want to go on and on and bemoan the turn our lives have taken, I also can’t discount the huge change it makes to not be able to go somewhere when you feel like it - even if it’s just a run to City Market (or maybe especially just a run to City Market).  The world I live in became quite small really quickly.  You don’t realize what a big deal it is until every time you want to go anywhere you have to think about: Who will I have to ask for a ride?  Do I feel like hanging out with that person? (Because usually it’s not just a “drop off” situation - or then of course they’ll have to come back and pick you up).  Do I feel comfortable asking that person?  Do I feel comfortable “letting that person in” to my life this day, this moment?  Am I in the mood to be social?  Why should that matter when I just want to run to the store?!!!

  I’ve learned over the last ten years or so - since I’ve gone to seminary actually, that I’m more of an introvert than I ever thought I was.  While I LOVE being around people, I don’t do a lot of small talk and it can be stressful and sometimes even exhausting (depending on many factors) to have to keep a conversation going.  I’ve never been one to have lengthy phone conversations or call just to talk.  And even as I think back to high school and my partying days, I almost always went alone so that I’d have the freedom to leave when I wanted (whether it be earlier or later) and didn’t have to fit other peoples’ agendas into my own (usually nonexistent) schedule.  Thinking too long about this kind of stuff can make one a bit crazy I do believe. Maybe I’m just an antisocial or unsocial weirdo, or maybe those things were the one part of life I could actually control, but that’s kind of how I rolled my entire life.  I guess a lot of folks do once you become an adult - not always have to have someone else with you when you go somewhere, etc..  Maybe I just started that early, I don’t know, but now it makes asking someone to not just take me somewhere but go with me somewhere a much bigger deal. Probably much bigger in my head than anything else...but who likes to do that much thinking just to run to the freaking store!  Ugh.

  When you add the anxiety of not being able to fully see everything it’s a bit overwhelming.  Going to new or unfamiliar places is really stressful now.  Because each of my retinas has a wreath-shaped section where I can’t see, I can easily miss things - like signs or steps or people if they’re in my blind spots.  I won’t see someone and then all of the sudden they’re there!  I can set a cup down on the counter and 1) forget where I put it (which is a whole different issue!) and then 2) not see it when it might be right in front of me.  It can be exasperating, depending on the day. 

  I’m so thankful for friends and family who are so ready and willing to help me, to help us both, and many have helped me find more tools and helps that makes things either easier to see because of more light or higher contrast, wanting to be the “fixers” that they are (and I totally get it because I’ve always been a fixer too)...  But ultimately these things can’t be fixed.  Ultimately these eyes are what they are...imperfect and flawed.  Ultimately we, I am going to have to figure out how to navigate through this new world and find joy in the midst of it all.  And I think part of grief is actually fighting or pushing against that reality, yearning for life how it used to be.

  As I come out of this season of grieving, not fully out mind you, I’m in a season of resignation but also of exploration.  What CAN I still do?  Or what can I do now that maybe I wasn’t as interested in before, but now I am because I can do it without help?  As I wrote that I thought, that sounds like a two year old, “I WANT TO DO IT!”  “What can I still do BY MYSELF?”  Ha ha!  I guess that never totally leaves us.

  Grief is a journey of both letting go and reaching out - and both are painful.  Letting go of what was - whether it be a state of being or situation, a relationship, a loved one; and reaching out in new experiences which, while they can be good can also be intimidating, difficult, and even unwanted simply because it means you might actually be moving on as it were and that means letting go of what was.  So even as you’re making headway...it hurts and it’s hard and you may push back because it’s uncomfortable and sad and different and (for me) dependent on others and ugh, just totally f*&%ed up.

  So that’s where I am.  Mostly good.  But some days caught up in the “woe is me,” of grief.  But mostly good.  I haven’t mentioned much about being a caregiver for Kim.  That may have to come on a different day...and he’s living his own story, too.  

  Hard stuff.  But I can’t end without sharing how God has not left me.  Certainly I’ve held Him at arms length for quite a while.  I didn’t, I couldn’t converse with Him because that would mean facing my situation and I didn’t want to go there at all for quite a while.  But He didn’t give up on me.  Instead He gently called me, until finally I could actually hear Him and then another long while before I could actually respond by drawing near to Him.  I didn’t really read anything for almost two years, which for me is foreign territory as I was used to having a stack of books that I was reading all at once.  I’ve been in the wilderness for a while.  But I’m thinking that the Jordan River might be just over the next little hill, and I know that across that river is the Promised Land.  I’m still in the wilderness.  Still in the desert.  But I think I’ve seen the river.  And that gives me hope.  I’m reading again.  I start my days by letting the dog out, getting her food, making coffee, and starting my devotional and bible reading (via audio) with Nicky Gumbel reading the Bible in one year as I do some exercises and yoga in the front room.  For me these are baby steps yet HUGE steps forward.  I’m still not sure I like them, but I’m doing them all the same.

  I still don’t know what the future holds, and truthfully it’s kind of scary to even think about so I try not to too much...but I do know Who holds the future.  And because of that I’m reminded that I have nothing at all to fear and all sorts of reasons to have hope.  

  If this finds you in a place of grief, of struggle, of change or even just discomfort I pray that you too can find hope in that you are never alone (whether you choose to acknowledge that or not) and there is a future for you that is good and can be joyful and hopeful - not because it will be filled with nothing hard or bad - but because the God of the universe will be with you and will guide you if you let Him.  For that I am thankful.  Thanks for reading.

~Sally