Catching Up

December 4, 2016 by

It’s been a year since my last post and a lot has happened in the world relating to my vision.

Beginning earlier this year, I noticed I was not seeing things like i used to. One morning i tripped and fell over a large sidewalk planter. Another day I fell getting out of a taxi because I didn’t see the curb. And then there was the day I walked face first into a metal sign… The bumps and bruises were adding up, and my confidence was going down.

On February 29th I saw my opthamologist for the usual round of exams, including vusual fields. This time when we all huddled around and stared at the paper charts, we realized that my remaining islands of vision combined were about 20 degrees. According to the US Government, I was now legally blind.

My doctor went into some sort of coping/therapy speech, anticipating that this would be devestating news to me. But I felt… Joy? Excitement? Basically, an adrenaline rush of massive relief.

FINALLY, I thought. After years of living between two worlds, not fully sighted and not legally blind, finally I felt like a round peg in a round hole.

For some reason I needed the label, the diagnosis, to feel justified in using my cane, or any other form of help. I always felt strange using a cane when I wasn’t “technically” blind. Basically, in the words of another RP’er, “I feel like I’m pretending to be sighted when I don’t use my cane, and pretending to be blind when I do.” It is a strange space in which to live.

After the “relief” wore off and reality set in, what followed was a period of mourning for me. And that is perhaps one of the most challenging things about slow vision loss: You grieve. You adapt. You overcome. Your vision changes. You grieve. You adapt. You overcome. Your vision changes.

So i grieved for a bit. I let myself feel the suck. The last time I grieved that deeply for my vision loss was 12 years ago, when I had to stop driving. This time was different though… This time I knew the cycle would end with me adapting and eventually overcoming.

Which brings me to today and my efforts to adapt to my new “status” and ever changing vision loss: I am currently enroute to San Francisco for a week of Orientation and Mobility training at the SF Lighthouse for the Blind and Visually Impaired. And then next August 2017, if things go as planned, I will receive a guide dog at Guide Dogs for the Blind.

Exciting times ahead, my friends! Thanks for joining me on the journey. 

between two worlds

September 16, 2015 by

Something I’ve been thinking about lately… Why do we feel a need to fix everything?

The majority of RP/blindness social media groups I follow are filled with articles of new research to cure blindness, and people wondering, questioning, lamenting, if/when a cure will be found.

I used to be one of them.

Lately though, I have started to wonder why. Why fix my slow vision loss? Why not stand and revel in the miracle of what it is to be half-sighted and half-blind? It is a completely unique and beautiful position. Why not savor it, learn from it, sit with it, and live in this beautiful moment, accepting it as it is?

I am not afraid of it.

Not anymore. I am not sure when the shift from fear to acceptance happened. Perhaps it has been a slow progression, just like my vision loss?

Fear consumed me when I had to stop driving. So many unknowns… Eventually the unknowns shifted into knowns as I leaned on family, friends, public transportation and my own two legs, and discovered they would support me. They would not fail me. I gained confidence. Acceptance. I can do this… This vision loss.

I do not feel the need to fix it. Not right now. I confess I am tickled pink at the privilege of being in a place so few others have known… Half sighted, half blind.

I live on the fringe of two worlds and it is as exotic and enchanting as one could hope.

Stay with me and keep following me as I unveil this crazy, beautiful place. There is much to share and see.

Grace, grace, and more grace

March 6, 2015 by

The past two years of my life have been incredible, rewarding, and a roller coaster full of change.

To start, I am now a happy, grateful, blessed wife to a man after God’s own heart, and stepmother to his 12-year old, delightful and funny son. My heart overflows with a joy that I thought might exist, but was never sure I would experience this side of Heaven.

Overwhelming gratitude. Answered prayers. New beginnings. And, a massive amount of new life lessons. So much to learn… marriage, motherhood, communication, changing family dynamics on all sides, household routines, budgets, favorite meals, over or under?, folding laundry, chores, ….

Grace upon grace upon even more unmerited grace.

Above everything, that’s the biggest thing I have learned so far in my five months of marriage and mothethood: Grace, grace, and more grace. That, and how much grace our Father extends to us all.the.time. without us even knowing.

Another change happening is our family’s location, which subsequently will provide me with more time and opportunity for writing. We’ll see if it actually comes to fruition. … Maybe it will just give anyone reading this an opportunity to extend grace to me? 🙂

Until next time, I pray that you are able to extend grace to someone who needs it, and be willing receive it in return.

Xo

Retinitis Pigmentosa Simulations

September 14, 2013 by

I have a lot of wonderful, caring people in my life who ask me what it is like to have Retinitis Pigmentosa (RP). Unfortunately, it is not easy or simple to answer because 1) it is different for every person with the disease, and 2) RP is degenerative, so what might be an accurate description one year could be diminished in the next.

Fortunately, there are some very creative people in this world, and they have sought to explain what they see using video comparisons. I have found a few on YouTube that I think are extremely helpful in showing what it is like to live with a reduced visual field.

Here is a link to a playlist I created: http://www.youtube.com/playlist?list=PLYpZu8YoO75PCNuBGMjy5cobdWVakNaeQ

For those with RP, I would be interested in knowing if these videos capture your world. For those with “normal” sight, I would be interested in hearing your reactions, thoughts and questions you may have.

I think it is so important to talk about RP and inform people that there are degrees of visual impairment. I suspect most people not affected simply assume the issue is black and white:  you either see or you don’t. Let’s talk about it and see if we can find a way to answer those wonderful, caring people who love us and want to help.

Today’s Thought

May 30, 2013 by

Disability does not equal weakness. Disability simply means I get from Point A to Point B a little differently than you do.

No craft was injured in the making of this… er, craft.

January 5, 2013 by

I tried to make a craft today. And by “craft” I mean, I tried to stick a magnet to the back of a champagne cork that I had been saving so that I could display it on my fridge. This wasn’t supposed to be rocket science. I had a cork, a knife, magnetic stuff, and glue. Easy.As.Pie. Yeah.

Do you remember how yesterday I wrote that I’m a bit rusty? Well, apparently this applies to my “craftiness” as well. Several years ago (okay, so now that I think about it, it was more like a decade ago), I was fortunate enough to be surrounded by some very crafty ladies. At the time, making glass magnets with magazine images as a background were all rage in our little group. If you don’t know what I’m talking about, which I imagine you don’t because I really didn’t explain it well, click here where this lovely lady explains it a whole lot better: http://www.notmartha.org/tomake/marblemagnets/

Back to the story… so about ten years ago, I bought all these supplies (craft glue, a bunch of small glass beads, and a magnetic strip that could be cut up) and assumed all could be used for my highly technical craft of today. Interestingly though, when you don’t use glue in a decade it dries up. And, when you keep wood glue outside in the winter, it freezes. And wood glue doesn’t really seem to stick to cork anyway. And when you never change the blades on your utility knife, the blade is so dull you can’t cut through cork. And when you store a magnetic strip in a coil for ten years, it’s really hard to convince it to lie flat.

Could've been so beautiful, could've been so nice...

Could’ve been so beautiful, could’ve been so right…

Please note the dried up blob of glue on top of the Tacky Glue bottle. Looks like it might be time to update the craft supplies.  If I do this well with a cork magnet craft, I bet you can’t wait to see what comes next!

so sad

so sad

PS – “The Chook” is a sparkling Shiraz that is beyond delicious! Try it, you might like it!

//

Beginning Again

January 5, 2013 by

Why is it so hard to start again?

I think about this blog a lot. Well, more recently than I have for a while, anyway. I want to write again. I want to share more. … I want to remember how to create sentences that do not rely so heavily on the “vertical pronoun.” 🙂 The desire is there, but I am rusty.

I would like to share about new things happening in my life, but I feel strangely stuck because this blog has focused primarily on the Camino de Santiago and living with Retinitis Pigmentosa. It brings to mind a post I wrote three and a half years ago about This Blog  (Amusingly, for all intents and purposes, it could have been written yesterday.)

For the time being, I will continue to let various topics grow together in this virtual garden. As I start writing more regularly, which is the goal, you may read about new topics such as: Clean Eating, DIY house projects, and Pinterest (I’m addicted), with continued thoughts on my journey as a single, Christian woman living with vision loss. (You’re on the edge of your seat, aren’t you?)

Lord willing, there also will be more posts on TRAVEL! Woohoo! 2013 holds the promise of a few different trips, including the Outer Banks of North Carolina and PARIS! (The use of caps is still my main tool for indicating how unbelievably EXCITED I am, and should not be confused with shouting. Merci.)

For now though, let me just say how much I appreciate all those who visit this blog. I wish you all to know how dearly you are loved by our great and merciful Father. Whether you are walking the Camino, struggling with vision closing in around you, or feeling alone as a single, mid-life adult – have faith! “For I know the plans I have for you,’ says the Lord, ‘plans for well-being and not for trouble, to give you a future and a hope.” (Jeremiah 29:11 NLT)

Until next time…
Luci

//

I bought a house.

July 23, 2012 by

After six months of craziness, I find the end of the house buying process is really just the beginning of a whole new life.

I bought a house. With the grace of God, I bought a house. I find I have to keep saying it over and over because I am having a hard time letting it sink in. I bought a beautiful, 100-year old, 2-flat house.

I thought FINDING the perfect house would be the hard part, but it turns out the closing process was the most challenging. But it is all said and done now. I have the keys and mortgage to prove it. I bought a house. A beautiful house. I can’t wait to build memories here and see what the future brings. I can’t wait to use this house as an instrument of God’s light and love.

P1000812

I bought a house!

Symbolism

February 1, 2012 by

Well, it’s official. I am no longer allowed to drive. Legally, anyway. I decided it was time to turn in my driver’s license and get a state I.D. card instead.

Technically, I have not driven since November 12, 2004 (see this blog post for details on “hanging up the keys”), but I continued to hold onto my driver’s license for… kicks? memories? habit?… Symbolism. That’s it.

I had to give up driving. I had to give up my car. But I was still able to keep the little card in my wallet that showed that I had – at one point, anyway – the freedom and independence that comes from owning and driving one’s own car. And now, my little piece of symbolism is gone.

It took over seven years to finally let it go.

In its place is a sense of acceptance. It is not lighthearted or joyful. Not yet. Mostly, it acknowledges that which cannot be changed: This is happening. I have RP. Just as the disease continually deteriorates, changes, and modifies my eyesight, so must I continually adapt. … Change. Adapt. Repeat.

Monday morning, I walked into the DMV with a driver’s license, and I walked out with a Class V1 Disability State I.D.

I have a new kind of symbolism in my wallet now.

*************************************

For more information on disability types and classes for the State of Illinois, please go to this website.

Disability Type: Visual (V)
A visual disability is a disability resulting in complete absence of vision, or vision that with corrective glasses is so defective as to prevent performance of tasks or activities for which eyesight is essential.

Class 1
A Class 1 disability is any type of disability which does not render a person unable to engage in any substantially gainful activity, or which does not impair the personʼs ability to live independently or to perform labor or services for which he/she is qualified. 

Visual Field Update

January 26, 2012 by

I have updated the “Specific Info About My Vision” page on this blog. (Look to the right and click on the link.) There you will find my latest and greatest Visual Field results from January 2012, and can compare them with the results from 1995 and 2006.

If you have any questions about Retinitis Pigmentosa, or living with it, just let me know!

LuciWalks @ gmail.com