Advanced RP'rs

Living with Advanced RP (Retinitus Pigmentosa) These things are soooo true!


**I'm one of those "advanced RPers" who didn't jump in to the
discussion about the later stages of RP when it first came up. I
think this is because I am more focused on the emotional aspects
than the physical characteristics, and I wasn't sure I wanted to
post about how I'm feeling. The heavy grieving that comes with the
near-total and total vision losses of the later stages of RP is the
other side of RP that we don't talk about much. **

** **

**I'm down to less than one degree of a foggy tunnel, and
transitioning from low vision to no vision. I can't see Andy's
facial features across the dinner table anymore, my photophobia is
so severe I often find myself doing my chores and gardening with
both eyes shut tight against the glare, and when I call my guide dog
Trace to saddle up and go out, I don't even bother looking to see
whether it's Trace or my retired guide April there ready to go. I
just feel the difference in their fur.**

** **

**I'm learning Braille, honing the one cochlear-implanted ear of
hearing I have, learning how to access my computer with a screen
reader, improving my mobility skills, and learning other strategies
for functioning without vision. Indeed, I've been cleverly figuring
out how to function with little or no vision in my kitchen and the
rest of my house for years. **

** **

**A cure would be glorious, but I'm not sitting around waiting for
one. Life goes on and I'm going with it. One way or another I will
land on the other side of sight still connected to my world, still
functioning, still surrounded by people I want to be with, still
having a Life (and a good one at that). And yet, even with all this
determined resolve and resilience, I'm awash in an ocean of grief. **

** **

**We RPers and Usher folks have no corner on the disability and
grief markets, but there's no getting around the fact that loss and
grief are a big part of our territory. One grieves and mourns just
as deeply for loss of a life function as one does for the loss of a
loved one. Grieving is one of those universal Life lessons that
every human must learn, and for whatever cosmic reason, our lesson
comes in the RP format. **

** **

**It is not just the loss of the physical sight, but the loss of the
livelihoods and life routines that go with sight. Quitting driving
and losing independent private mobility... losing the ability to
keep up with the hearing sighted workplace... getting rid of all the
print books in our bookshelves.... Right now my signature is an
issue for me. I used to be a lawyer, and lawyers cultivate their
handwriting and especially their signatures, along with their
mastery of the language, for clarity of both expression and
personality. As my vision goes, the clarity of my signature goes,
too. It's a heartache every time I take pen to paper. **

** **

**Years ago, when the losses and the grieving were nowhere near as
hard and painful as they are right now, I talked about all this with
my cousin shortly after she had buried her husband after a long bout
with cancer. "It will get worse," she told me, "and it won't get
easier until it's over." I knew exactly what she meant. Just as she
had to walk through the unbearable grief of watching her husband
die, and could not start to put herself back together and move on
until AFTER he died, nor can I escape my own losses and grieving
pain. I just have to walk through it, and it is not going to get
easier until it's over.**

** **

**And you know what? That's okay. It's damn hard, and it's the way
Life goes. It's part of the process. My resolve is to walk through
this as fully and completely as possible, so that I can move on as
soon as possible, as whole in spirit as possible. I'm learning that
going blind now is harder than being blind is going to be, and even
as my spirit aches with the losses, I reach for a peace in resolute
resilience and most of all, hope and faith in myself and the love
and support I am so fortunate to have in my life. **

** **

**Thinking about the "being blind" part is still hard, but getting
easier. I know and admire so many who have no sight, some who have
never had sight at all, and when I watch them I am reassured that
Life is not only going to be do-able, but just fine. I recall a
recent conversation with a friend who has been blind from birth
about perceiving the world with and without sight. I told him about
a blind person I know of who just can't get the concept of
transparency, and is mystified how anyone can see through a pane of
hard, solid glass.**

** **

**"Oh, I don't have a problem with that," my friend said. "My
problem is pictures."**

** **

**"Pictures?"**

** **

**"Yeah, pictures. How do you put a three-dimensional world onto a
flat sheet of paper? That just blows me away."**

** **

**That blew ME away. It dawned on me that my friend experiences the
world in a much deeper way than I ever have with my sight. He has a
physical, kinesthetic and "up close" sense of his world that is not
possible to achieve when you rely on sight to perceive a
three-dimensional world that can be put onto a two-dimensional piece
of paper. **

** **

**He has helped me realize that my world without sight will not
necessarily be diminished. It will be different, and probably more
difficult, but not diminished. To know this does not make it any
less painful to lose the sight, any more than the fact that my
cousin was able to move on and love again after her husband died
makes it any less painful that she had to lose him in the first
place. **

** **

**But somehow, it does make it easier to know that on the other side
of sight, the other side of RP, the livelihoods and life routines
can still be good even if they are different. **

** ** ** **

**Mary Dignan**

We DID it!!!! - continued

We made our way quickly down Main street in Speedway, which had the most spectators thus far and rounded the turn onto 16th street and very quickly made the turn to head down the hill and back up into the Indianapolis Motor Speedway grounds. We went up the hill and there were a group of cheerleaders waiting for us and cheering people on, which we soon found there were cheerleaders nearly all the way around the track cheering for all the participants.

Here at the track we had our second hitch of the day as Steve needed to make a pit stop and he got in line for the port-o-lets and I kept on going, as he said he'd catch up to me. So we kept right on moving and had just merged onto the track itself when a young girl was doing something silly up higher on the track, to my right and she spun around and came down in front of us. She wound up between Rei and I, so I dropped the harness handle to keep from getting my arm yanked off and she was somewhat tangled in the leash. She apologized profusely and I said no problem and as soon as she was clear, picked up the handle and we kept on going. Steve came up behind us pretty quickly after that, a little out of breath as he was jogging it to catch up with us. LOL!

So we worked our way around the track and it was pretty fun, as the cheerleader groups got really loud and were a lot of fun as they noticed Rei and were specifically cheering us on. It was on the track that I started to feel the blisters form. I think it was from the angle of the track, but I was determined to walk through them and we did! We got around to the straight away and Steve let me know that they took pictures as you cross the bricks, so I took my wrap-around sunglasses off and put them on my hat and turned the hat around too so I didn't look quite like a Dude in the pics. The sun actually made a peek from behind the clouds about this time too, which was nice and the within the track it was really nice to be protected from the winds that had been blowing so hard all morning. So we made our way on around and I was feeling pretty good at this point and we were just past Mile 7 and then we went out onto an access road and down around the end of the Grandstands along 16th street. We did a sharp turn off of this road and around the corner out onto 16th street and a guy came running over to the curb, peering to read my bib- as the bibs have your number, your first name, and the corral you started in. He immediately yells back to a woman, I assume his wife, "IT'S KACIE!!!!!" and runs to her and as we round the corner there is a dark hard lady with a camera snapping all kinds of pictures and screaming at the top of her lungs "GO KACIE & REI!!!!"

I later learned from Mike that our good friends Julie and Suzette had arrived at the finish line/Military Park about this time and as they were walking around that they heard my voice and looked up on the large screens and the interview was being aired at that time. So while I don't think it was someone I knew - though it very well could have been since I was trying to focus on Steve in front of me and the terrain we were going over at the time, but it could have been too the person had just seen the story on the big screen that Mike said was there at the end of the grandstands too and then we came around the corner. But that was kind of a surprise as it happened and Steve and I got a little bit of a chuckle out of it.

We then quickly turned onto Olin Ave and there were several turns to negotiate here and it was obvious that people were starting to get tired and slowing down, as we seemed to start passing more and more people at this point. We then passed the 15K marker which is 9.1 miles and I was telling myself OK, 3 more miles! and was feeling pretty good. We turned left onto 10th street and the 10 mile marker, people were really starting to slow down, so we walked a good ways down the middle of the street where it was more open and not as many people to fight to get around. As we approached the 11 mile marker, Rei then started pulling hard to the left side, as that meant one of two things. She was really starting to get tired or she was needing bathroom stop. She wasn't indicating the latter so we moved to the left and she really began to slow down. I told Steve to slow the pace a bit as we'd been moving along at about a 15 minute mile pace most of the way after mile 4ish and I was trying to watch for her cues and such.

I had arranged with our small group friends, Joe and Julia to be just past mile marker 11 across from the water station, however they had water stations on both sides and we missed them. Which since Rei was really sagging at this point I was looking hard for them as they had a banana and a bowl of water for her, but alas it wasn't meant to meet up. They were looking for us too and missed us as well since we were on the other side of the road from them. Steve and I did grab water from the water station and stopped and gave her water as she was panting pretty good. We were soon rounding the corner to head back onto White River Parkway - along the river and Rei pulled real hard to the left and to the grass indicating that she did need a bathroom break, which upon taking the harness off, she really had to pee. She seemed good so we harnessed up and she took off at full speed again so I thought we were going to make it to the end without another stop, but just before the 12 mile marker, she pulled over again needing to finish the job. So once done with that, she was ready to move again and was feeling much better.

Mile Marker 12 was right before the left hand turn onto New York Street- the last stretch to the finish line! We rounded the corner and went over the bridge and she started pulling to pass people again, which the break in the stops she needed to make did us both good to rest even for those short periods of time. So we head over the bridge and walk down the middle of the street again as people could see the finish line so they were pushing hard and then very soon running out of gas as they had just over a mile left to go. We maintained a steady pace and had 3/4's of a mile left and Rei started to slow down as Steve was walking on my right side and she was becoming lax in where she was headed. I asked Steve to move to Rei's left side just at her head and she immediately picked up pace as she now was following him with a sense of direction on where she was to head. So we plugged on full speed ahead at back to the mile eating 15 min mile pace again. Soon we were down to 1/4 mile left and there were people on both sides and Mike was to our right yelling out to us that we were almost there and he followed us along. People were yelling and cheering as we approached the finish line and I honestly couldn't believe we'd did it!

Julie and Suzette had come down- to have stuff for Rei once we finished and she got some pictures as well as Steve's wife of us approaching the finish line. Here we are nearly there:

Here are are about to cross the timing devise that crossed over the street that was the finish line and Steve is on my right in the white coat with his hand raised for the photo finish. I raised my hand once, but not sure if my timing was right, we'll see what the picture winds up being. LOL!

Steve and I then received our Medals and he insisted on one for Rei too, which we put on her as well. We then went through the lines and got our goodies to eat and went over to the finish line pictures and each of us had individual pictures taken and then one of the two of us too.

Then his wife, Marta, took some pictures of us together as we were kneeling down with Rei between us all with our medals on- I just have the biggest grin on my face! I wasn't so sure I was gonna be able to get up though after kneeling down!

Here is Rei and I together with our medals. A picture definitely worth framing!

Then after we came through the exit from the participants area, Mike, Julie, and Suzette were waiting for us and Julie snapped several pictures of us here. Here is Rei and I- I'm standing and Rei is like DUDES! WHERE are my bananas! LOL! She knew they were coming!

Mike, Rei and I together

Here is Marta, Steve, Me, Rei, and Mike all together.

A really good close up of Rei with her medal AFTER she got several bananas and some water. She was a happy camper then.

We then went over to the official time tent and picked up my official time which I was very pleased with! We did the entire 13.1 miles in 3 hours 22 minutes and 25 seconds!

Here are my official results out of 30994 Finishers - 14420 Males / 16574 Females :

KACIE W

Gender: F
Distance HALF MAR
Clock Finish Time 3:46:21
Chip Finish Time 3:22:25
Gender Place 13498th place of 16574 female participants
Division Place 2379 / 2767
Age Grade 32.8%
Overall place 26929 of 30994 finishers
Ctz US
5Mile time 1:14:23
10Mile time 2:30:10
Division FEMALES 30-34
Divt 2767
Sext 16574

So after we got my official results, we went on back to the Connection Pointe Christian Church tent and met up with the Mini Training Group people and there were LOTS of hugs and congrats of all the people there who we have become friends with over the last few months as we walked/ran together each week. I need to say a HUGE Thank you to Christie from CPCC for taking such good care of all of us there and all during the training program. She is such a sweetie and has been supportive and behind Rei and I even before we signed up for the program, as we started looking into trying lose weight and get into shape. So as usual, she had all kinds of drinks, snacks, cake, and all kinds of good stuff to get into all of us after the race.

Soon Dad and Aunt Nancy came to the tent too, to meet up with us and they got some goodies to eat too. We got a picture of the four of us and it was such a good day and was sooo happy that we all did well!

We took some pictures too with some of our other friends:

Here is a picture of Deborah, a good friend from the disabilities ministry. She rode with Mike and I to and from the race and we've done a lot of things together. Too bad Rei and I walk a little faster than her!

And this is my new found friend Melissa, which turned out she wasn't entirely a "new" friend! Turns out we knew of each other back in the college days, where we both worked for the Purdue Residence Hall Food service in the residence all I lived in! However we are both dog lovers and she trains dogs in agility as well as she's been an awesome friend in giving me rides home each week from the training group and we've gotten to know each other well and she and Rei are good buddies! I was sooooo proud of her that she finished the race! WAY TO GO MELISSA!!!!

So after we'd pigged out and drank our fill at the CPCC tent and the adrenaline rush started to wind down, the blisters started to hurt and the stiffness started to set in. The cold also started to become apparent and I was glad to have the sweatshirt we'd packed for after. We gathered up our stuff and made the trek to the car about 3 blocks away and headed for home.

Mike then went and picked up the kids from all of our friends homes that they'd been staying and I stayed up for a bit knowing that the kids would want to talk to me once getting home plus I was putting out the messages that we'd finished the race and had a great time. I peeled my shoes off and turned around to find Rei curled up and snoring on the couch, so grabbed the camera and here she is- the checkered bandanna with her name inside the grey heart and spun around to her back and she was out!

Once Mike and the kids got home, AC had been running a bit of a low grade fever, so I stayed home with him and we laid down in my bed- Rei joined us of course and we took a much needed 3 hour nap! Mike showered and he and the girls went to church and grabbed dinner from Subway to bring home. After dinner, I got a shower and found Mike with his feet elevated on pillows and Rei sacked out and curled up next to him on our bed together. Boy she's a spoiled doggie! LOL!

I want to say a HUGE THANK YOU to everyone that has wished us well, supported us and been there for us through this whole process from getting to be in the Mini to actually completing it! I especially need to thank my family and most of all Mike for standing behind me all the way and kicking my butt in gear when I wanted to quit. I couldn't have done it without them! It has been absolutely amazing and we have been sooooooo blessed by God to have such good family, friends, and for the ability to do this!

We DID it!!!!

Today was the big day~ Months of negotiations, correspondences, tears, fears, and then miles and MILES of walking to train have come to a culmination today! :)

We left home bright and early this morning, shortly after 5am to head to downtown Indy. We were fortunate enough to get there early enough that we were able to obtain street parking since the lot we'd planned to park in was designated as 500 Festival employees only. After parking, we made our way in the dark over to Military Park, where the Connection Pointe Christian Church tent was and where all the CPCC Mini Training Group were meeting up. We made a bathroom break for Rei and myself to make sure we were good and about 6:30, we headed over toward the start line on Washington Street.

The route itself runs over and through Speedway main street, then around the Indy 500 Motor Speedway track and then back to Downtown Indianapolis, ending up in Military Park. Here's a map of the route:

It was bitter cold as the 18-20mph winds whipped through the downtown buildings and the temps were in the low to mid 40's. Overall though with all the bodies packed in we were pretty good. First we headed to the Marriott hotel as a group for one last bathroom break and to hang out in the hallways in the warmth and stretch out and do last minute planning/strategies for the race. It was almost awkward as we walked through the hallways lined with other runners and feeling all the eyes watching the two of us walk through. I heard a lot of comments of "there's the dog on the news!" in reference to the interview that aired on Thursday night about 5:50pm Indiana time. For whatever reason, this has not shown up as a link online yet, so I used the camera to record and share this with you all- this is courtesy of Wish TV 8 news:

****** NOTE: If you want to play the video, you will need to go down and hit pause on the playlist down to the lower right side of this page- or you won't be able to hear the words of the video.

If you are receiving this post in an email- you'll need to go to the web page to view the video, as the videos are not posted in the emails*******

So we had about 10 minutes to make our way down to our corral, which was letter Z since we had to start at the very back. We had to really work to get through the super crowded sidewalks and Steve, who walked with min in the 15K lead off. Unfortunately, David that was our lead walker and pace setter was ill and unable to attend today, so prayers are with him for a speedy recovery!

Steve and I picked our way through the heavy crowds and suddenly found ourselves face to face with another large yellow lab that immediately went up on its rear legs lunging towards Rei and growling. So in defense, Rei responded in a similar manner and both of us immediately corrected our dogs and the spectator pulled his dog over to the side and out of our path, which I immediately got Rei to re-focus and back to work and we quickly put distance between us and the dog to get moving on toward our corral.

The race start line was located just west of West Street and as David had told us from his experience, we were just under the overhanging building of the Circle Center Arts Garden. We placed ourselves at the back and along the back rope of corral Z, but it still seemed that there were a LOT of people behind us, especially once we started working forward.

The start took a good while to get us to the start line, which you can see from this photo of the start- you see the start line at the front- I was right under that big glass semi circle way back at the back!

So once we finally made our start- we took off and it was quite a challenge those first 3 miles. People were rather indignant and lacking in understanding the running etiquette of moving over when calling out that we were passing on the left/right. Also since there were quite a few "runners" in the back corrals, people kept cutting between Steve and Rei & I, making things a little confusing for Rei, however we just hugged the left curb as much as we could and Steve did an awesome job of keeping track of where we were behind him so that he could call out as we began to pass.

We made our way along Washington street past the zoo and over the bridge for White River. We rounded the turn onto White River parkway and I was amazed at the huge line for the port-o-lets after that first turn before we'd even made it to mile 2! We plugged away and continued on and made our way along the divider median and things started loosening up and people started spreading out as we worked our way to Michigan Street and made the left hand turn there.

I have to say that since this week has been off in training, I started out kind of slow and really feeling it in my ankles and it took the first three miles to get myself loosened up and that started to happen as we were headed down Michigan street and about to pass mile marker 4. So far we were seeing all kinds of mom and pop bands along the road as well as spectators standing out there to cheer us on despite the cold!

We then rounded the turn to take Main street through Speedway and made good work of that and came to Steve's daughter. Lorrie and her hubby, who had came and set up up a sign for us all and took some pictures of us coming in. I had my hat on backwards as the winds were strong enough I lost my hat once and it seemed every time I'd turn it around the right way, the wind would start and flip it right off my head.

Lorrie took some good pictures here:

The signs she made saying: 1. Guide dogs should Lead the Pack! 2. Go David, Steve, Casey, and a paw print. Then the last one was to her dad, Steve- Go Steve, we LOVE you. :)

Then these two shots are of Steve and I coming down Main Street in Speedway,

and Rei was on the move! :)

****To be Continued*****