First Low Vision Poem - January, 2023

 New Eyes

Dwindling vision.

There’s never enough light.

Colors fade,

They used to be so brilliant.

Lacking contrast is my enemy,

Missing steps, ruts and curbs.

They threaten my confidence,

Fear knocks at the door.

No more driving

Independence wanes.

How will I live?

Where can I go?

Friends take on a different light.

I survive on their generosity

Spontaneity is rare

Rides take plans, walking takes time.

Grief comes in waves

With change, both good and bad.

Numbness and introspection

Even God seems distant.

Weeks turn into months,

Months into years.

How then, shall I live?

Depressed and disconnected?

Hell no! 

This is not the end of me!

THIS is a new beginning,

A new way to experience life.

I can do hard things.

I can learn new ways.

I can walk A LOT of sidewalk,

And I can ask for help.

Independence had its day.

Dependence came for a visit.

But I still have much to offer,

And still so much to learn.

Inter-dependence.

I NEED you.

And you need me too,

I believe it to my core.

Two is better than one

I once read in the Bible.

If one falls 

The other can help them up.

I still miss driving…

I miss running to the store.

But something transpired,

God did a thing.

There is new life, 

New eyes to see a different world.

With more vulnerability, more connection, 

More beauty…

Only to be seen with eyes closed.

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