My Love/Hate Relationship with the White Cane

The White Cane - 10.29.2023

Who knew the decision to pursue this training

would bring about such big emotions.

It’s a presence all its own, this long white stick.

An identifier of its owner,

“This person is blind, they cannot see,

Make way, clear a path, 

give a broad berth to the blind woman.”

I felt the isolation as I walked this morning,

Each person in the distance seeing me with my cane,

Moving to the other side of the street

Or taking a different path.

In their thoughtfulness they avoid me.

At times I feel the hypocrisy: I’m blind,

But I CAN see, just not everything.

I want to explain to each person who wonders,

The story too long for a t-shirt.

Granting independence while at the same time

Declaring to the world my disability.

it’s no longer my private battle

Waged by only me.

Now that pedestrian, my neighbor and the guy in that car

All know I need help. All know I can’t do it by myself.

Compassion? Pity? Curiosity? 

I feel like I’m being stared at

Even though they probably aren’t even looking.

Why do their opinions matter?

My trainer reminds me

Most don’t even notice us.

Oh yeah, it’s not about me.

I read that once, even preached it

A lifetime ago.

Cane lessons continue

I’ve mastered an intersection

On to the roundabout

Will this ever get easy?

Will this ever be “normal?”

  When I wrote this I was in a bit of a funk, if you couldn’t tell. Thankfully time has passed, I continue to learn, and like all things the more you do something the easier it becomes…

  I started my white cane training in September, 2023 I had no idea what I was in for. I had no idea of the emotional, mental and physical toll it was going to take on me. After each two hour session I’d be emotionally and mentally spent, many times ready to just sit down and cry or go curl up in a ball. The multi-tasking that has to happen at every intersection was blowing my mind, but thankfully I think I’m over the hump and on the other side of the big stress.  I recently “graduated” from conquering a large intersection near my home. One of the busiest intersections in our town (12th & North Avenue). It felt good to know where I should be looking/listening when, and when to push the button so I’m not standing there for ten minutes at each crossing and understanding what you can and cannot assume about traffic lights and crosswalks.

  I still rely on my lacking vision more than I probably should. But I’m remembering my training - always watching for the right turner who’s watching for a break in traffic more than pedestrians, despite the kind intentions stepping back and letting the car do it’s thing so there’s no misunderstanding about who’s doing what, 

  The hardest part though, has been getting over the presence of the cane and what it represents both to others and to me. I recently discovered Dave Steele, #TheBlindPoet and was reading some of his poetry that spoke of the cane not as a pariah but as a sign of strength. The cane allows me to keep my independence, to not settle for staying home and withdrawing or always relying on others to get around or lead me in low light. It’s a tool. And it’s an identifier. It lets people know I may not see them or their big car that could take me out in an instant.  It’s such a mind game, but one I’m slowly getting used to and getting over. Who knew? Who knew all this cane stuff was going to be more mental and emotional than anything else!

  So the saga continues, every two weeks. My trainer comes to town again next week and we’ll be working on the roundabout downtown. I can’t even imagine this with no sight at all. My senses are heightened. I hear and feel and touch more. I let the cane explain why I couldn’t track what someone was pointing to or holding up or referring to. It helps. It helps. It will continue to help. And I can do this.

Thanks for reading.

~Sally

#lowvision #davesteeletheblindpoet #canseecantsee #blindlowvision #maculardegeneration 

 

Vision Update

Apparently this never posted when I wrote it a few months back. So here it is.  

   It's been a bit since I've written much about my vision. I can tell that it is getting progressively worse.  Surprisingly, it feels like in the last few months it has really taken a dive.  It's always hard to explain to other people how your eyes see something, but the easiest way for me to explain it is that most of the time I feel like I'm wearing sunglasses indoors.  There's never enough light going into my eyes.  It used to be that I could see more and brighter in the center of my vision but that seems to be getting a bit darker as well. I keep finding myself raising my head up and down or side to side to try to see an area more with my peripheral vision but it never seems to help much, but sometimes it does.  In between the center of my vision and the periphery I don't see much.  Like I said, it simply makes for a much darker picture of things.  

    About three months ago I reached out to the Center for Independence and they sent me to the CO Division of Vocational Rehabilitation. After confirming with my ophthalmologist that I am indeed legally blind we moved forward. I initially reached out because I wanted to look into getting trained to use a white cane, but after talking with the low vision specialist I think they can help with a lot more than that.  I just spent the last two weeks going through assessments with the specialist talking about everything from my work space to walking and traveling to how I work in the kitchen. I'm actually really excited for the specialist to come to Grand Junction in the next 2-3 weeks and he'll take a look at the house and my work space and where we live and maybe even dive into some training and just discussions about tips and helps that will hopefully make life a little easier and not as stressful.

    Prior to these weeks of assessment I'd been getting kind of anxious thinking about how much was going on - in work things were crazy, Kim wasn't doing really well physically or mentally so I was needing to help hime more, and adding more learning and education to my plate (particularly when it came to technology and computer work) I was started to really get stressed out.  But after talking with the specialist and even in our conversations he would share tips and ways to organize that will make it easier for me to function, I started feeling a lot better about things.  

    So this morning I went to the DVR again and we went over the plan. I'm mostly excited about getting trained with a cane so I'll feel more confident in low light or even dark situations, and I'm also really excited about the sunglasses possibility.  I've tried to find good sunglasses for myself for years but I've never been able to find the right ones that will help with the sun and glare but not take away from what vision I do have. So the specialist is going to help me by having me look at some things both near and far and identify what I can see, and then try some different shades and see what works while I can still see the things I identified.  Yay!!  

    I'm not at the point yet that I'd probably qualify for a guide dog, but it could be something down the road if my vision continues to deteriorate.  We'll see.  I may just stick with my "guide son!"  He works pretty well!

    So that's my update.  I'll be sure to post more as I go through the training.

Thanks for reading.

~Sally

I See You...

     I recently made a post on a Facebook page called A view from my window.  On the page people post pictures and sometimes even tell stories of where they are, whether at home or traveling, and why the picture might be significant.  For some it's simply the raw beauty of where they live. Some of my favorites have been in the northern countries - Norway, Sweden and Finland - showing breathtaking pictures of fjords with the midnight sun, never quite gone, still glowing on the horizon.  Others are simply foreign or unfamiliar and truly interesting to see - Syria, Morocco, Israel, Germany, Maine, California and more. Some are quite plain and ordinary looking. The view out of an apartment in a nondescript area of the UK, but the person who posted the picture writes that they love the view because it's their first home after their divorce and it represents a new life and hope and a fresh start once again.

    So the post I made told the story of how Kim was diagnosed with a neurological disorder and I had to quit driving because of my sight and our son and DIL asked if we'd be interested in pooling our money, tearing down their garage, and building a small house right behind theirs where we could live and be close for help when needed.  I posted a picture of our patio area showing parts of each home along with the beautiful trees and garden area.

    The response to this post has been mind-boggling! It at 159,000 Likes, over 300 Shares and I've probably had ten different people reach out to me.  The people, all women, have all asked what neurological disorder Kim was diagnosed with because they also have a loved one with a neurological disease. Besides some people trying to find out what other possibilities are out there as they continue to search for even a diagnosis, others it seems just want to connect.  I really think many of these people simply want to know that there are others in this world who have also gone through the pain and suffering that they have watched their loved ones go through because it makes them feel seen and acknowledged. I get that.

    When you're in the midst of suffering or feeling overwhelmed it can be so very comforting to simply know that you're not the only person who has gone through it.  Someone else knows what this feels like.  Someone else has lived through this and learned to tell the tale of resilience and strength. And so I've been trying to answer the questions and share some of our experiences and how we're learning and what we're learning as we journey. It has made me that much more aware of the vast suffering that goes on and what a simple gift it is to say, "I'm so sorry you're going through that.  I know it sucks." Sometimes all we need is that acknowledgement.

~Sally

Summertime Catching Up, 2023

    Once again it's been a while since I last wrote.  While it's only August 4th (our sweet Sarah's birthday), school will be starting here next week which makes it feel like summer is coming to an end.  I revolt and push back as much as I can against that idea.  Summer is my favorite season and it saddens me to think it's anywhere near the end.

    I had my last spiritual direction meeting today with my friend Megan Babayco.  She was in the process of getting her doctorate in spiritual direction and needed some "guinea pigs" to practice on so I jumped at the opportunity a year ago, July.  It's been a wonderful journey with someone who asks good questions and helps me take notice of things that might otherwise slip by.  When we first met I felt like I was really starting to come out of the fog of grief and, after keeping God at arms length for a season, I was ready and wanting to draw near again.  I was looking at how life is NOW, not what we envisioned it to be at this stage.  Certainly ministry-wise I had very different expectations about what I'd be doing and it's been awesome to have someone (and actually I have quite a few someones) who will point out the ways that I'm still very much ministering to others.   Beyond the families I talk with in my work, we started hosting a house church in the Spring of 2022 with eight couples.  We meet a couple times a month on Sunday evenings and we're now up to thirteen people and every so often we add another one or two.  I also started writing more regularly.  In January I wrote a daily devotional that I sent out to some friends and family each day.  After January I cut it down to twice a week and just recently took it down to once a week with all that's going on.  I have a dream of doing a podcast with Sarah one day.  I think between the two of us we'd have some good content...the technology is intimidating though - along with finding the time that we can both do it!  Something to aim for though.

    We had lots of company this summer with our nephew Alex and family (Brittany, Blake, Aliyah, Jordan and Wren) along with the Saturno clan of five in June. There were lots of hikes, swims, meals, trips to the park, Mexican Train and good conversations.  The next month my sister Lee with Ron and Emily came for first a week in Vail at their timeshare and a second week with us.  Again, lots of hikes and pool, wine tasting, mountain exploring and good conversation. I can't help but note how as our families grow and mature we still have to work hard on communicating well and giving lots of grace.

    It's mind-boggling to think about the long histories I have with so many family members. I think I know them really well but then realize that they have many years of living that I have no clue about, those day to day interactions and events that I may not even know about that also feed into their experience and worldview (let alone their personal thoughts and processing).  Then you add all the family that I haven't had much interaction with, who also continue to have daily living and personal processing that add to their experience and really, it's amazing that we can communicate effectively at all.  We each have such vast experiences and perspectives. Different personality types, motivations, traumas and triggers that can point us in totally different directions talking over or under or around each other, all the while thinking we're being perfecting clear.  Oh Lord, help us all!

    I'm thankful though that despite bad/missed/under/over communicating we still love each other deeply and desire to keep trying to come together in meaningful ways.  I'm so thankful for the people God has surrounded me with, be it family or friends.  I am rich in community and grateful.  

Happy Summer! 

~Sally

Christmas 2022

 Christmas 2022

It’s been quite a few years since I’ve written a Christmas letter, but it seems like it’s time.  Much has transpired in the last few years and I finally feel like I can see it all with clearer eyes and a contented heart, which is such a gift to have been given.

Our year of 2022 began with Kim still recovering from the fall he had in December, 2021 that broke his left femur (to give him matching hardware on both sides). He did more PT at home throughout January/February ending with illness that turned into Covid and pneumonia.  Thankfully, though he was down for a couple of weeks, he didn’t ever get the horrible respiratory struggles.  March brought another scare as the doc had seen concerning shadows on Kim’s lungs when he had pneumonia so he had a biopsy on them.  Thankfully again, all was benign.

In the meantime, I flew off to FL in January with Ellen for a week to see Lee, mom and dad.  We had so much fun together and it was rejuvenating for me to get away.  Anyone who has been a caregiver understands the need to step away every so often and I’m so thankful for friends and family who readily step in to help so I can and Kim who encourages me to go.

As spring progressed Kim got better and better.  My grant-funded position at RMHP/United Healthcare was coming to an end and thankfully my superiors helped fit me into a newly created position with another grant-funded state pilot program that provides intensive in home therapy to children and youth to help prevent them from having to go into higher levels of behavioral health care.  I provide care coordination/case management.  It’s heartbreaking to learn the stories of these children and their families and the daily struggles, stigmas and barriers they face.  I have a deepened respect for families dealing with a child with mental illness.  It’s a rough rode and can be so very lonely and isolating for those families.  I’m thankful I’m a part of the team to help these families connect with needed services and community supports that can help them.

On the home front Kim and I haven’t felt called to return to church to worship. We stayed away during Covid and for reasons that are still hard to totally pin down we haven’t been drawn back.  We did however know that something was still missing in our worship, and that something was the body of Christ.  Community.  So we invited three other couples we knew who were also not feeling called to go back to the larger church and we started a micro church or home church.  We meet on Sunday evenings twice a month and include music (with me leading on guitar), prayers of confession and for thanksgiving as well as concerns, multiple scripture readings and discussion (and sometimes a message that I’ve pieced together or that someone else wrote - many times it’s been Nadia Bolz-Weber’s writing - a wonderful progressive Lutheran pastor), and communion.  It’s an intimate, beautiful time coming together in worship.  We’ve expanded with a couple more people and hope to continue to slowly grow.

We started out sharing the preparation somewhat, but the more we’ve gone on the more it has fallen to me which was not my intent but I do love it. Deciding on the scripture verses, music and message, writing the prayers.  It all fills my soul and answers a question I’ve been asking the Lord the last few years…. What am I supposed to be doing with all the preparation and call to ministry that you placed on my life?  God has shown me through my friends that my meager preparations for our worship times is a gift for them, and for me it has been a gift to realize that I still have something that I can do for others and not just be on the receiving end all the time.  I’ve also seen God use me and my pastoral care in my workplace both with colleagues and clients and their families.  It’s been such an affirming gift to have my eyes opened to see how God is using me.

My eyesight, however, has gone in a different direction as it continues to deteriorate.  In January I was tested and found to be legally blind.  I’ve learned that familiarity is my friend, so as I’ve become such a big walker since I quit driving I tend to stick with familiar routes.  I walk to City Market often, around Lincoln Park and a number of places in our close vicinity.  This summer I bought a punchcard to the pool and eventually started swimming laps (and not just sunning and cooling off in the pool).  I found that having a regular dose of sunshine and exercise not only did my body good but it brought about so much gratitude and true joy and contentment.  As the weather and daylight changed I could not longer walk in the early morning before work or go to Lincoln Park Pool, so I bought a pass at the CMU rec center and try to swim 3x/week.  I’m pretty steady at 1000 yards which takes around 30 minutes.  I switch back and forth each lap doing either freestyle or breast stroke.  So far I’ve gone down a size in my pants and I feel pretty darn good.  I have to admit though, it’s tough getting out the door on Tuesday evenings to go swim when it’s 30 degrees out!  So thankful to Sean who takes me on Tuesday nights after his long day of teaching and wrestling practice.

Kim and I flew to Harrisburg, PA in late Sept. to visit Sarah, Anthony and the three boys - Rilo (13), Rocco (6) and Vito (3).  They’re all amazing.  It was an awesome visit and it was so good for Kim to realize that he can once again get out and about - being driven around, going out to dinner or lunch, seeing the sights.  It was a big boost of confidence for Kim and he came back a more engaged and confident person than when we left.  So thankful.

Kim still has his struggles, particularly this time of year with so many storm systems coming through.  It seems to stir things up, and his ataxia symptoms sometimes just go into overdrive.  His vision can get really bad with his eyes getting really jittery, his balance worsens and his speech and swallowing worsen as well.  Spinocerebellar ataxia.  Who knew it was a thing?  Just like I didn’t know low vision was a thing until I had it.

Sean and Megan are both a huge presence in our lives, usually eating dinner with us at least a couple times a week if not more.  They make themselves available if we need rides or something picked up, and invite us to go out and go to events, etc.. We try not to burden them excessively, but we know that we are a constant thing in their lives that they always consider.  Not what they counted on, at least this early in their lives I’m sure, but we try to utilize all of our supports and not just the kids so as not to over-burden them. It’s hard to not feel like an unwanted weight on their lives, but we try to turn that guilt into gratitude.  We’re so aware that many don’t have the huge safety net that we have with our many friends and family.

Other highlights of our year were Lee and Ron visiting this July as they made their annual trek to their timeshare in Vail.  Ellen and I were able to join them a couple days in Vail and then they came to GJ and helped Kim and I celebrate our 40th anniversary with a big party at the house. It was an awesome time with so many good friends who added to the festivities.  Sean and Megan were in France doing their annual month-long vacation/rejuvenation before school starts back up, and the Saturno’s weren’t able to make it out either so we were especially thankful that Lee and Ron were here.  We’re happy that July has become their annual trip to CO!  

2022 has been the year that both Kim and I have begun coming out of the fog of grief and transition from my loss of vision and driving, Kim’s diagnoses and progressive symptoms as well as all that Covid brought (although truthfully for us Covid didn’t change a lot of things).  We’re both in a better place both spiritually as well as mentally/emotionally AND physically.  Thanks be to God that he doesn’t ever leave us in one place and never leaves us (even if we can’t always see or feel his presence).  We’re settling in to what is our new normal, as it continues to evolve, and we’re getting better at leaning on God’s strength instead of our own as well as asking for help from people who want to give it. We’re still learning and growing, but God’s presence is palpable and obvious and for that we are ever so grateful.  We’re learning to live more in this day, in this moment, and while we can still plan and get excited for the future - right now is where life is happening so we’re trying to live it now…and that’s a good place to be.

We’re looking to trips in the next year:  I’m going to FL in early Feb. with Ellen and to Italy with Sean, Megan, Megan’s dad Mark and partner Marie along with a bunch of other adults and students from Megan’s school in March.  While we’re gone Kim and his sister Lois are flying to PA and will visit the Saturno clan.  We’re excited for our trips and thankful to have the means to take them.

Well that’s our year.  HUGE changes from the beginning of the year to the end of it. Kim is doing SO much better, despite still having many challenging days, but he’s getting better at pushing through and realizing that connecting with other people helps him mentally to cope. We’re learning to really pursue those things and people who help make our lives better.  What a concept!  

Thank you to so many of you, our family and friends, who have helped carry us through the difficult times with prayers and kindness, with meals and Door Dash gift cards, with rides and wine and emails and messages of encouragement.  You have also celebrated with us and spent time with us simply doing life and making it much richer by your love and presence.  May God bless you richly for the love and care you have shown and continue to show us.  It’s our prayer that with whatever 2023 brings, God will continue to show us the blessing and joy of the moments we are in, gratitude for the moments that have passed, and hopeful confidence for the moments yet to come.

Merry Christmas and Happy New Year.

Sally & Kim (and Zoe)

Community

   I've been reminded this last week of how blessed we are to have the community of friends and family that we have.  We found out late last week that Kim has both pneumonia and Covid, which explains A LOT, but has made life so very challenging.  But our community of friends and family have been reaching out to us in so many different ways and I'm always reminded after experiencing the love and support of so many, how very blessed we are.  In my work as a care coordinator I came alongside so many folks who had no safety net at all, no family who could be counted on and no friends who could come alongside even to encourage let alone offer tangible support.  It has opened my eyes to what a difference it means to be in community with others.

  I'm also aware, however, how hard it can be to be in community.  It means opening up your life to others.  It means being transparent and vulnerable and not always being the one in control (as if we ever really are).  Since I've had to stop driving and Kim's disability has become so much more prevalent I've become so much more aware of how very independent I was before, and how I really kept many people at arms length to some extent.  Sure, I share a lot on FaceBook, but I don't feel like I openly invited people in real ways to be a part of my everyday life (a few, but not many).  But I guess simply being involved in things - like church mainly, but also at work - speaking up, sharing things about what was going on in life here and there with coworkers, friends and fellow church-goers opened the door for them to come in more than I realized.

  It's always been easy for me to speak in front of groups and much harder to have one on one relationships.  I have a very real fear of intimacy that manifests itself by avoidance.  While I may be an extrovert in that I am energized by being around people, when I'm in a large group I feel very awkward approaching others and starting up conversation.  Ach!  I hate that about myself!  How I wish I knew how to have small talk...  But ask me to preach, or to lead worship/music and share about how a song moved me and why and I'm your person.  Weird, I know, but I've always held the value of being myself around other people.  So whether it's in front of many or in a small group or even one on one, I can be very honest and open about my struggles, about how I feel about things and what God is doing in my life.  

   If you know anything about the Enneagram personality types (if you don't, Google it!) I am a nine.  So I am a pleaser to some extent, but even more so, I'm thinking about if something I do or say or what others are doing or saying might make others uncomfortable or in an awkward position.  I may avoid the later, but not the former.  I think it's good to have deep conversations, even hard conversations, but I don't want to back people into a corner, make them feel "less than" or stupid.  I'm a connector, a peacemaker, a facilitator, a translator.  I help others understand things more fully, I lead by example, I encourage and support, and I almost always think of others before I'll think of myself.

  So in a Zoom meeting I try to be as engaged as possible to encourage others to engage as well.  In a small group I will open up about things in my own life not only to share and let people in but also to help set the tone of the group - that we are doing life together not just reading/studying some book together.  If you want people to open up to you, if you want people to be involved in your life, you have to let them in - as scary as that might seem.

  Not everyone can handle transparency.  Some people feel they have much to hide that they're ashamed of or embarrassed about.  But I've found the more that I share my own failures, shortcomings, embarrassments and fears, the more safe people feel to share theirs.  I have no idea how I learned this.  I feel like it's always been innate.  But it's a gift that, as I've used it, has come back to me time and again.  People are refreshed to hear someone be brutally honest about what's going on (without going so overboard that they feel obligated to help or do something, that's never my intent).  But because I've let people in they've come to love me...which shouldn't be surprising, but it is.  I have felt the love of so many people in my life simply because I shared my own life with them.  Such a simple thing, but sometimes also so very hard.

  Community is important.  It's how God made us to live...intertwined, being there for each other, mourning with each other, celebrating with each other, holding each other up when things get hard, and encouraging each other on the journey.  It makes all the difference.  I truly don't believe we're supposed to be independent OR fully dependent on each other, but God made us to be interdependent, holding each other up as we limp along together through life doing our best to love God and to love others.

~Sally

Another Year and Here we Are...

   It's always amazing to revisit this site and be reminded of what was happening the last time I wrote.  Almost an entire year to the day has passed.  I traveled a lot in 2021!  In May I flew with the Jensen's to Boston for Anthony's graduation from Gordon Conwell Theological Seminary.  In August I visited the Saturno's in their new home in Carlisle, PA and then again in early December when I was blessed to fly out and baptize Vito (age 2) and preach at Anthony's ordination and installation service that same afternoon, December 5th.  What a wonderful day, and what an honor to be there and take part in it all.  In early January of 2022 I got to fly with my sister Ellen to FL where we visited my other sister Lee and my parents.  They were thrilled to have the whole family together - the first time in four years.  I am so fortunate to have had these opportunities.

  When I was returning from PA Kim fell and broke his other femur.  He had surgery and was then in behave for another couple weeks, coming home just before Christmas.  He's has a rough couple of months.  His hip is healing well and he's off all prescription pain meds, but the ataxia has been relentless and the added stomach issues (that we're learning may be ataxia related or may not be) have been awful as well.  To wake up five out of seven days in a cold sweat wrenching, then get the chills and feeling so dizzy you can hardly function and don't even feel like eating anything...a sorrowful existence to say the least.  It's been hard for both of us.  Kim will have an occasional day that's not quite so bad or maybe not have stomach issues, but the ataxia seems to get worse as time goes on.  It's truly amazing Kim isn't over the top depressed, but he listens to Charles Stanley daily (if not more) and hangs on to the hope that God is using this in some way for good, even if he can't see it.  God bless him.  He's tougher than he will ever admit.

  Change is on the horizon as my position at Rocky ends on April 30th.  I am going to apply for disability (I'm not legally blind) and hopefully can just work part-time as caring for Kim has become much more than it even was six months ago.

  Well, that's an update.  Hoping the next entries can be a bit more inviting, interesting and engaging!  I have a new laptop - so I'm hoping it will inspire me to write more.  Here's to inspiration!  G'night all.

~Sally