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Ever just lie in bed and wonder, you dig into your memory bank and try to figure out what was real or imagined? For years I have these flashbacks that haunts me when I am awake and dreams that awakens me with fear and tears. My dreams are so vivid that I still remember them even after nearly 50 years. How do you determine what is real? What I can tell you is my feelings are real, my fears, anxiety and sadness is real. Every day I have these feelings, it haunts me. What happened so many years ago? I remember so many happy childhood moments, as a family we did so much camping, hiking, skiing, sailing and a lot of star gazing. Happy days. We were a family always on an adventure, never a dull moment. So why is it so difficult to retrieve memories that are unwanted? Did I shield them with armour to protect my sanity?
Muddled memories, mom crying, signing and talking because at the time I was not really talking and at that time was discovered recently that I have moderate to severe hearing loss. New to a hearing aid, I had often threw them out of my ear because the world was too loud. I remember crying, rocking myself to sleep. Afraid of the dark (like most kids), I would not go to sleep unless the hall light was on, bedroom door was open wide, and my cat on my bed. It must of been a frustrating bedtime ritual for mom, especially having to find our cat. I would sometimes cry till Tammy (cat) came into my room. Every night for years I would rock and bang my head till I fall asleep, it was like I was trying to forget something and tiring myself so I could finally fall asleep. Even did this into my early teens. How can one have grown up in such a happy childhood with great support of my family and be so conflicted? I do not understand, I don't remember why mom was crying, all I know, something had happened.
Now only just recently, some stories shared amongst family, me still not knowing what the story is as it was not described to me in detail. I do not want details, I didn't need details and yet, my memories are confusing to me. All I know is my family loves me and protects me, and would never hurt me. But who did? That is a mystery that hopefully one day be solved, and I have regrets that I didn't pursue this sooner.
My mother was diagnosed with lung cancer and before our last Christmas dinner together, had announced that she has cancer. Hope, there is hope mom had said, three months later she died, in the hospital (which was the last place where she wanted to be dying). During those three months, I had spent a lot of time with my mom (we were very close), we talked very deeply about love, religion and life. During those months, I had wanted to talk to mom about my childhood haunts, I wanted an answer. I looked at her, weak, lying in bed wearing a soft cap on her head (she lost all her hair during chemo),I just couldn't ask her the question. I could not bear her to suffer more than she already has. I so desperately wanted to ask her what she had asked me that day. Whatever she knew of that time, her burdens was taken with her, it was her last selfless act she had done for our family. She protected us right till her very last breath.
Now, sixteen years later, my dad is now eighty and not well. Again, I am wanting to seek answers, the quest for peace of mind. Again, I can't do it. Why should my father suffer as he is suffering enough. But I do know this, I will have answers, it will all come back to me one day, or maybe someone will tell me. Some one knows something...
To Whom it May Concern: Be brave, have the courage to tell me, no matter how bad it is. I am strong and this will not break me. Peace will be with you as it will with me.
For as long I have known me, which is a very long time (smile), I am that same person who loves to laugh, be silly, be adventurous, be serious, be afraid, be me. So what had changed? It seems the more vision I lose, the more people in my life fade away. Some family, some friends chooses not to see me beyond my vision loss, I don't understand what is it that they are afraid of? I often wonder if I embarrass some of my family and friends because of my vision loss, do I make them feel awkward? Am I a burden to you because I don't drive or be able to come to you for a visit? I often feel sad and isolated because of this. This was especially hard when I was a teenager, because at that age, we are learning to drive or driving. You can hop in the car, drive to McDonalds, hang out with friends, go to parties, shopping with girlfriends, or just going out for a drive. I never got my driver's license, I was too scared, being newly diagnosed with Retinitis Pigmentosa, I was afraid and unsure if I had enough vision to drive. So early on in my life I was experiencing isolation from my peers. Most classmates did not know I was going blind, let alone being hearing impaired. I hid that from a lot of people. Fooled many, even myself. It took many years before I actually understood what going blind is like. Now in my 50's I still have those feelings of isolation. Some days I forget that I am going blind and other days it really hits me. More than anything, it is society that reminds me of my blindness - body language, avoidance, and ignorance plays a big part of that. The rest is how I perceive myself as a blind person. Yes, I forget to take my cane out on more days I care to remember. Chris (my partner) always says, "Rose, I know your sight impaired, but the others don't, take your cane." Damn, he is so right!
We all run with one foot in front of the other, it's that simple, well almost that simple. I have been a runner since 2004. Ten years ago I didn't think much about my low vision or how it will affect my running, in fact it wasn't until I fell into a ravine during a club trail run. I had some difficulties at the time but I didn't think it was worth mentioning. At that time I probably had about 25 degrees field of vision , cataracts were developing and had a lot of problems with ever changing shadows and sunlight. I finally told some running members that I had Retinitis Pimentosa. I also had one hearing aid, it was insufficient for my hearing loss and old technology (analog). Looking back now, I can't believe how long I have struggled to hear with one hearing aid. With the combination of lip reading and putting sounds into what I think people are saying can be so trying, I get it right sometimes but when I get it wrong , I really get it wrong!
I remember how I started running, my goal was to run the distance from one telephone pole to the next, eventually worked up to running around the 3.2K loop around the dike. I was also 45lbs heavier. It was hard work running around with 45 pounds of butter hanging off you! So losing weight was on my mind, not losing my vision, that came later. I joined the running club not long after and signed up for my first 1/2 marathon in Victoria. I have ran this event every year since, except in 2011. In 2007 I have done my first full marathon, what a feeling that was ! Boston qualifier, wow now that is what is on every runners bucket list. In 2009, Chris Morrison and I did the Boston marathon as a tethered team . We used my yoga mat strap as a tether, let me tell you, it was uncomfortable. Throughout the marathon we were constantly adjusting the strap to make it more comfortable. After the event , we both agreed we need something better and to practice more as a tethered team. The next marathon we used my daughters skate lace and a couple of silicone wristbands. It was much better. Now if only I know my lefts and rights. If I could get a dime for Chris saying left! No , the other left! I'd be wealthy. Fourteen full marathons later, I am still learning how to run effectively with my guides. No run is the same for me because of this progressive disease, always changing and adjusting to the changes. This makes it a real challenge for both my guides and myself. My last full marathon was October 2013 with Kerry Hale and we sailed through the hills and a consistent pace, talked about children, arts, writing and life in general. Having a guide makes running so much less stressful, especially in a event. Since then, I have continued to run and train with a schedule that suited me, running with my dog on the paved trails where I felt safe and can do on my own. This lead up to my last event in October 2014 running with Jodi and Nic at the Victoria GoodLife Fitness Marathon doing the half. My body was tired, tired of training on my own, tired of the struggles of trying to avoid any mishaps and decided in August 2015 to give running a break.
It has now been five months since I have done any running. I must admit, I miss it. Chris and I have been going to the gym for 3 years 3-5 days a week and finally, yesterday I went on the treadmill. I decided to try running again. To my surprise, I ran slow and steady for 20 minutes non stop. I feel I am ready to start this journey again. If I fail, I fail. I will not beat myself up about not able to run again, it just means I have to adjust. I am all to familiar with adjusting, having Retinitis Pigmentosa taught me this, however frustrating it is, I can not and will not stop because of it. It will be back to the beginning again, my goal is to run for the sheer hell of it. For now, I will not commit to any events for right now, I just want to stay fit, promote fitness and who knows where this road will lead me. I still have that brand new wetsuit waiting to hit the lake, the kayak is looking a little thirsty too.
I hope those who read this blog will feel motivated to be active, whatever that sport may be. Let's make 2016 active and adventurous!
What another amazing weekend at the Victoria Goodlife Fitness Marathon. The event gets better and better each year. With the help of the Nanaimo Lions, Zone 7 and Chris Morrison, we had a stellar year! Chris had brought together some amazing guides for our sight impaired runners, with some of them having never guided before. You would never of known it was their first time. Words cannot express how I felt meeting these wonderful young people! Friday, Chris and I headed out for a couple hours drive to Victoria, dropping off our dog to the kennels on the way. We arrive at our hotel, checked in, and off to the race expo, again, meeting great people and discussing future races as VI runners participating to new ideas for smart phone apps. Chris and I picked up everyone's race packages and guide bibs. To our pleasant surprise, the Goodlife Fitness marathon has put in GLVM jackets along with their guide bibs and timing chips. This was the first event with guides ever getting the full race package. With 16 bright green bags in our hands we walk through the crowds of the expo and headed back to the hotel. As evening approaches, we were ready to pick up two of our American sight impaired runners from the airport. We were happy to see Richard and Corvin (both from California) looking well and pumped for the weekend. Saturday afternoon, we met with all the guides and sight impaired runners (most registered participants came to the meet and greet) and the energy was already rising with great excitement for tomorrows race. Dinner was absolutely delicious, Blue Crab Catering did a wonderful job of bringing out a fantastic buffet for all the hungry runners. We were well fueled for race day. I look around the room watching everyone engaged in their conversation, smiles, laughter and friendships. I felt very proud to be part of this. Chris and I work hard to fundraise for this and to see it all come together seamlessly was a feeling of great pride. Lion pride.
Chris was the first to be awake, making his oatmeal, I opened my eyes and actually felt well rested. I am so proud when I see Chris all donned in his running gear and ready to take on the 26.2 miles. He is unstoppable, off he went to the early start, and I mean early...6:30am. I was feeling quite confident and ready to do this thing! Nic and I met Jodi down in the lobby and Jodi was already chatting up a storm, that made me smile. I knew we were going to have a great run. We walked to the start line and the energy around us was building, photographers shooting, announcements on the loud speaker, and the horn is about to go off. I choose the 5 minute early start as i feel comfortable with no crowds and to have the opporunity for the elites to pass by. I great experience for 2.5 seconds! Even the elites had wished us a good race as they flew by. The weather was perfect, as per usual. Cool, but not cold, overcast and NO RAIN! It meant I could run with hearing aids on. Did you know, I have been running this event since 2004, and only once in the last 10 years, it rained? I don't mind running in the rain, but I prefer not to. The gun went off and away we ran, we were all feeling so good from start to finish. The run seemed effortless in all 21.2K. I enjoyed the company and the guidance of two great guides. Nic and Jodi were awesome, they made the miles disappear quickly. I even did not notice the Dallas Road double hills. Usually that is the toughest part of the run for me. The support of the runners passing by, the crowds along the sides were giving us encouragement and cheers. I thought to myself, 'this is a great event, its no wonder we come back every year!' Throughout the run, I wondered how Chris was faring on the course. As we were entering the park, a woman yelled out something, and all I heard was my name. Nic said "did you hear that Rose?" I said "no", so Nic had told me that there was a woman on the side of the road saying "Way to Go Rose and Chris says HI!" and quizzically i try to figure out who that woman was. It turns out (as I found out after the run, talking to Chris about this woman) that this woman was a volunteer race marshall and Chris had stopped to tell her to give me a message. What a beautiful man Chris is, he knew I would be thinking of him and wanted to let me know he is doing okay. It was such a nice touch to my already perfect run! We finished strong at 2:07 and placed 1st as a Vision Impaired Champion in the 1/2 marathon. Not bad for an ol' gal. :)
I want to thank so many people for making this weekend special, George Hajecek for coming out from Ottawa again to guide, you are such a wonderful person! I hope to see you next year. Nic Tickner, Jodi Weber, I hope you guys keep guiding, because you are great at it, Judith LeRoy, for being there for us, especially at the last minute, Trevor and Keiran Ruck, Chris Thorne and Chris Koch for trying something new, and doing a terrific job guiding and last but not least, Jerry Krall once again coming back to guide. Standing ovation for you all, THANK YOU!
Some comments from other runners:
"Over the years I've raced many races and competed at all levels. I can honestly say that guiding has been one of the best running experiences of my life. Not only do you share the sport you love with another but at the same time, you are part of something much, much larger. To help someone achieve a goal who has overcome so much, just to get to that start line, is humbling and a major honour. To all those VI athletes, thank you for your trust in me and for letting me be part of your journey. "
"Rose Kamma Sarkany and Chris Morrison made the Victoria Goodlife Fitness Marathon a VIP experience for all those involved. It started with their Canadian hospitality upon arrival at the airport and didn’t end until they put us through security at the end of the weekend. Highlights included a wonderful pre-race dinner at our host hotel with other VI runners and guides, meeting new friends, and spending down time with others on this common journey of vision loss, guiding and endurance sport. The race itself has something for everybody, whether you are a walker, marathoner, or want to run the 8K or ½ marathon options. It’s so close to Seattle that it’s almost not fair to call it an international race. Canadians have to be some of the friendliest and most courteous people on this planet. If you are looking for a destination race, why not choose one that makes the VI VIP?"
Richard Hunter (Folsom, CA)
Visually Impaired Marathoner, Ultra Runner
Chris T -
"One of the most unique running experiences I've been lucky enough to have today. I was able to "guide" for Greg Tonge (white tank top) today for the last half of the Victoria Marathon. Greg is visually impaired and running his 48th marathon. "Inspiring" doesn't begin to describe the whole day...
Big thanks to Nic Tickner for the encouragement and for linking me with this community!"
I had the opportunity to guide Rose alongside fellow guide Nic and really just had an overall lovely experience. We chatted the entire way and worked well together as a team. I had a lovely run and felt very inspired and thankful to be able to assist Rose to be able to take part in the event. When I need to dig deep during any race I often remind myself of those less fortunate that are not able to run at all. This always pulls me through and to be able to enable another runner to be able to continue doing what they love is just a wonderful experience. I feel you guys are an inspiration to many people that have various disabilities. You portray that limitations should not be limitations at all; we just have to adapt sometimes. I look forward to incorporating guiding into my running lifestyle and thank you guys for this wonderful opportunity not only to give back but also to meet new friends along the way :-)
Chris M -
It is, and continues to be an incredible event, which, with the support of the Fitness Goodlife marathon organisers, athletes, guides, and volunteers continues to go from strength to strength. The support of our local 'Front Runners' should also be recognised. Our host hotel yet again provided great service and an exquisite banquet.
Being chosen as our Lions Clubs International, Zone 7 project this year was of course special too. Enabling us to provide technical vests to the athletes and guides running under the banner of 'C Us Run' sporting a unique logo.
Having been part of the 'Running for Change' campaign since it's inception in 2009 I continue to believe it is at the forefront of raising awareness not just for the Visually Impaired/blind on a national and international stage, but also everyone whom society labels with a perceived disability.
Nic T -
First of all I would like to say thank you. Thank you for the lessons. Lessons that show me so many things, you and Chris showcase love, attention and caring support through each other's hurdles. You showcase what it really means to chase down your dreams backing yourself the whole way. You not only make things happen for yourself but you put your heart into ensuring that other people, strangers can live their dreams as well.
I arrived on Saturday to Chris' beaming smile ready and waiting as my bus arrived and that set the tone for the rest of the weekend.
We met the rest of the athlete's both VI and guide's and shared smiles, stories a fantastic dinner (kindly supplied by running for change) and a little bit of each others world. Many of us meeting for the first time and with the experience ahead were going to be a whole lot closer by the end of the following day.
The following morning Rose and I toed the line and with Jody. The race itself was a great experience working together to make sure we all got to the end safely and with a giant smile at the end (maybe a few grimaces in the middle). The endless support and encouragement from fellow athletes is my favourite part of race day.
After every race day I enjoy the reflection, the reflection that makes me oh so appreciative that even toeing the line in any manner is an option and a reality. To be able to share that, and help facilitate that for some one else in the smallest way is the very least I could do and brings joy to my being. This race day reflection will stick with me for life. To all the VI athletes out there I say thank you. Thank you for showing me that no matter what, I need to chase my dreams and follow a daily path that keeps me happy, sometimes we will have to work harder for it than others, but as long as I continue to strive for this result I am headed in the right direction.
I look forward to the next time I get to don the guide jersey and share an unforgettable day with another beautiful soul.
Thank you to Chris Morrison and Rose Kamma Sarkany for hosting such a wonderful weekend and all that you do for many communities.
Nic Tickner - A fellow human in admiration of many
Thank you to all for sharing your experiences on my blog. I cannot express my gratitude to you all, Rose.
We did it! It was only just last month that I decided I wanted to do the Qualicum Beach Triathlon. I don't know why but I did. So I emailed the race director of the event, explaining that I have done a triathlon once before and interested in doing the QB triathlon. I wanted to inform them that I was sight/hearing impaired. Almost instantly I got a very welcoming response from them and asked if there is anything they could do to make this an accessible event for me. Wow, how could I not do this triathlon? So next challenge, find a guide. I was so fortunate to know a few people and within days I got a response from a guide Kerry Hale (he is an ironman, coach and had guiding experience with me at previous running events) and I knew we would be a great team for this event. As it turns out, Kerry's wife Lynda was signed up for her very first triathlon, so it makes the event even more special.
TRAINING: hahahahaha, training? hardly, I am notorious for not doing proper training, but my wonderful supportive partner Chris helps me along. We went on the beastly tandem, for 12 K ride, thinking there is NO way that we could do any long distance on this heavy old clunker. But it will have to do for the triathlon as that is the only thing I got. Chris and I went out to the pool a few times to practice our front crawl, and a few runs, even a brick session. (its a ride and run session when training for triathlons)
PRE RACE PKG PICKUP: Excited! Chris, Kerry and I met with the race director, going over some last minute details and what to do with the tandem. Kerry has never been on a tandem before and we needed to get out there and practice before we race in the morning. Chris quickly gave some advice and away we went. Circled the parking lot a couple of times and headed out into the streets. I felt totally at ease during our practice ride. After our ride the race director was kind enough to allow us to store the bike in the pool office. The bike is big and cumbersome and not the easiest thing to transport. So we were happy to leave it at the pool overnight.
RACE DAY: up at 6:00am feeling rather cool, calm and collect. I had all my race stuff packed the night before so there is no rushing or obsessively checking the list of stuff I needed. Chris and I drove to Qualicum and met Kerry and Lynda, chatting excitingly about how our race will go. We racked our bike, prepared our transition site and I still felt very calm about the race. Knowing that Chris and my dad was out there supporting me and having a great guide, I knew I was going to have a good race.
We wished each other good luck and walked off to our Heat section. Before I knew it, it was my turn to go in the pool. Kerry was to tap my shoulder for me to start (can't hear him so we use tactile cues). GO! and off I went, by my second lap, I knew my goggle wasn't properly put on and water was filling up my goggles. I decided not to panic and continue to swim to the end of the pool and quickly fix the goggles, I had to do this twice and after the second attempt, I carried on with leaking goggles. I thought to myself 'I have no time for this' . Before I knew it, my swim was over, I completely lost count of how many laps I was doing. Luckily they had lap counters for the swim. Kerry and I went off to our transition area, and within minutes, dry off, put on shirt, sunglasses, water bottle, gloves and helmet. We were off. We had to do four laps and we were responsible for our own counting. Lap one was a little rough as we almost missed our turn on the route I said to Kerry,"we turn here", the flagger was talking to someone in a car and Kerry was trying to get the flaggers attention for reassurance that we were going the right way...so, we made a very very wide turn, hit the gravel and powered up so we didn't lose control. After that, I was very confident that the rest of the ride will be smooth and fast. By the time we finished our bike, my clothes were dry! Back at the transition area, we racked our bike and I only had to take off the helmet and gloves and it was a super quick transition. Rubber legs as soon as we got off the bike but quickly adjusted. The run however, was hard! Kerry and I had never done a trail race before. Trails are much more technical and slower to run on. I was disoriented throughout the trail because it was so winding and I had to hang on close to Kerry so I don't trip over roots or hit trees and we had to do this loop twice! All the shady and lighted areas in the trail makes it very difficult for me to adapt, so I relied on Kerry completely throughout the trails. For me the trees and dirt was just a green and brown blur. I could hear the crowds cheering and we are close to the finish. I heard my name announced in the crowds and my legs sped up and I said to Kerry "I can run faster now" and he asked if I wanted to finish on my own, and I said, "no, lets finish this together, as a team!" We had such a strong finish! We gave each other a congratulatory hug and I was elated as soon as I saw Chris. I love seeing his face when I finish the races. I see pride in his smile and I saw it on my dad's face too. It was such a good day! We did it in 1hour20min41sec YAY!!!!!
GOAL: maybe fundraise for a bike of my own and try another tri!
We all need challenge in life, even if it takes some adapting. I believe YOU can do this too! Be happy and keep TRI ing!
FACT: I was the first ever person with disabilies to do this triathlon in their 18 year history of the event. Hopefully I won't be the last.
It was last year when I started my first Braille lessons and shortly thereafter had to put on hold due to moving. Just recently I reconnected with a CNIB instructor and about to play with dots again. I have always been fascinated with Braille, sweeping my fingers over the page is somewhat like of a pimpled paper
I just got back from my first 2 hour Braille session and I don't know why but my heart was not into it today. Perhaps because it is another acknowledgement of what is yet to come. Same way as I felt when I started to use the cane. I know it just not something you learn and master it in one day, my fingers were so cold and I could barely feel the raised dots. We each had a 1/2 of an egg carton to use it as a tactile and visual aid as a 6 dots cell and (6) paper balls for each dot to form the letters. It was a creative way to show us how it works. As we were feeling our way through the letters, I couldn't help but question why I was here. Do I need to learn this? Especially with today's technology we have so many useful aids to use to help us 'read'. Am I ready for this? Will I ever get this? In BC, there is no law that braille has to be in one form (contracted or un-contracted) when displayed in businesses or on paper. Here is an example: I traveled on my own to Sacramento, CA last summer to a RP social. When going onto the plane, I used my fingers to figure out where my seat was (there was braille on each row below the carry-on cupboards.) It did not make sense to me and I couldn't figure out the difference between letters and numbers. Had I known there was a symbol for number I may have figured it out. It was then I was glad I came to the class, I had learned something new. It really is like learning a new language. I look at this as a new challenge.
I come to this second lesson with a better frame of mind, I have accepted the fact that I needed to learn this and yes, I may need this in the future, even with all the wonderful gadgets available to us. Simple things like going to the washroom, in a dark building would be most helpful, or while on the plane when the lights are out, have finger will travel, and to find your seat without assistance. Maybe even in a dark restaurant, your fingers will help you decide what is for dinner. I do think practicing braille can be a challenge. Maybe I will buy a slate and stylus and practice writing and reading braille, it could be fun! It certainly a cheaper alternative to buying those expensive braille printer or braille books. I actually downloaded a smart phone application called Braille Code Driller. So far, I have been practicing several times a day, that is a good start. Once I get the alphabet down, I will practice more on the braille sheets. Who knows, maybe I will sign up at Hadley School for the Blind for more classes. I am open to any tips, suggestions, and websites if you have any! Please leave a comment, I would appreciate your help.
This weekend, I had the privilege to be a guest speaker at the District 19-I Lions Conference in Nanaimo, BC. I must say, I was pleasantly surprised how much I enjoyed public speaking! First, I want to thank District Governor, Leslie Smith for inviting me to speak, the presentation of an award and gift. It was a great opportunity and thoughtful. I will post my speech here for others to read. I hope this will bring more opportunities as I am very passionate to talk about this. Lion Chris and I are willing to travel to do presentations, don't hesitate to email me: email@example.com
Excuse me if I appear nervous, it has been suggested to overcome one's nerves, is to imagine the audience naked. I can only say I'm happier to be blind.
Thank you District Governor Leslie Smith for this opportunity and Lion Don for the introduction.
Welcome Dr. Patti Hill, Lions, Lionesses and guests. It is an honor to be here today as a guest speaker for the District 19-I Convention. On some tables, there are envelopes, I would ask you now to open them and put the paper glasses on. This is a simulation of what tunnel vision may look like. Feel free to pass on the glasses to others so they too will see. While wearing them take note on how your surroundings change, how you feel, please take time to discuss this with others throughout the weekend. Thank you for volunteering, I hope this will help in some small way to see what I see on a day to day basis.
I am now going to take you back 90 years. It is a warm sunny day of June 30, 1925 in Chicago. I suppose you have heard the legend that represents opportunity as a capricious lady, who knocks at every door but once, and if the door isn't opened quickly, she passes on, never to return. And that is as it should be. Lovely, desirable ladies won't wait. You have to go out and grab 'em. I am your opportunity, I am knocking at your door. I want to be adopted. The legend doesn't say what you are to do when several beautiful opportunities present themselves at the same door. I guess you have to choose the one you love best. I hope you will adopt me. I am the youngest here, and what I offer you is full of splendid opportunities for service. The American Foundation for the Blind is only four years old. It grew out of the imperative needs of the blind, and was called into existence by the sightless themselves. It is national and international in scope and in importance. It represents the best and most enlightened thought on our subject that has been reached so far. Its object is to make the lives of the blind more worthwhile everywhere, by increasing their economic value and giving them the joy of normal activity. Try to imagine how you would feel if you were suddenly stricken blind today. Picture yourself stumbling and groping at tnoonday as in the nights: youyr work, your independence, gone. In that dark world wouldn't you be glad if a friend took you by the hand and said, "come with me and I will teach you how to do some of the things you used to do when you could see?" That is just the kind of friend the American Foundation is going to be to all the blind in this country if seeing people will give it the support it must have. You have heard how through a little word dropped from the fingers of another, a ray of light from another soul touched the darkness of my mind and I found myself, found the world, found God. It is because my teacher learned about me, and broke through the dark silent imprisonment which held me, that I am able to work for myself and for others. It is the caring we want more than money. The gift without the sympathy and interest of the giver is empty. If you care, if we can make the people of this great country care, the blind will indeed triumph over blindness. The opportunity I bring to you, Lions, is this: To foster and sponsor the work of the american Foundation for the Blind. Will you not help me hasten the day when there shall be no preventable blindness; no little deaf, blind child untaught; no blind man or woman unaided? I appeal to you Lions, you who have your sight, your hearing, you who are strong and brave and kind. Will you not constitute yourselves Knights of the Blind in this crusade against darkness? I thank you.
This was the speech of Helen Keller, things have changed since then, what hasn't changed is the Lions commitment as Knights of the Blind. It was a warm sunny day, March 22, 2014 in Nanaimo, (well, its not warm and sunny, but its a good day!) I stand here before you as a Lion, an athlete, an artist and a mother. I have Usher's Syndrome. Usher Syndrome is an inherited condition characterized by hearing impairment and progressive vision loss. The vision loss is due to retinitis pigmentosa (RP), a degenerative condition of the retina, and usually appears during adolescence or early adulthood. Balance may also be affected. Symptoms vary from person to person and progress at different rates. I was born with severe hearing loss and at the age of 16 was diagnosed with Retinitis Pigmentosa. I started with normal vision and in my teens, I had noticed that I could no longer see well at night. The stars had already begun to fade. It is a simple fact that Retinitis Pigmentosa will eventually rob me of my sight. I have now developed tunnel vision, much like what you are seeing through the paper glasses. Most people have 180 degrees field of vision, I have approximately 10 degrees. What I have left is my central vision, the center of the tunnel. For those of you wearing the glasses, what is missing is the other stuff continuously happening in my eyes. A firework display around what used to be my normal field of vision. Those fireworks are the rod and cone cells dying. It is a constant reminder of what may eventually be the death of my sight. I cannot allow myself to dwell on this, I cannot let this disease define me. I define who I am and by that definition, I am a person of determination. I like to challenge myself in many ways. I run marathons, I swim, bike, kayak, ski, hike, paint, and I am and advocate. I started the Running for Change campaign in 2009 after doing the Boston Marathon. They had a Visually Imapired category in which I competed and placed fourth. Lion Chris was my guide and it was our first time running as a tethered team. We ran side by side for 26.2 miles. The experience changed my life forever. It gave my HOPE to carry on, knowing that ALL IS POSSIBLE and to NEVER fear darkness. Through my campaign I have make the 'Royal Victoria Marathon more accessible to the Visually Impaired and blind runners. The Visually Impaired category has been created, bringing awareness, safer starts, awards and recognition, free registrations for guides and bibs identifying guides and visually impaired runners. Canada's first marathon event ever to do this. I am proud of this accomplishment. Now the Goodlife Fitness Victoria marathon has become our signature event for the visually impaired runners funded and hosted by the Lions and Running Eyes - a facebook group started by Lion Chris Morrison to help pair runners and sighted guides toghether, to enable us to train or race as a team. The group has nearly 500 members and growing. The Alberni Valley Lions adopted my campaign in 2010 and together we raised funds for traveling to marathons and providing the Goodlife Fitness marathon dinner for the visually impaired runners and guides. We use this as an opportunity to raise awareness about guiding, inspiring others and of course to show our pride as Lions. We are the Knights of the Blind. This is our opportunity to show people how we serve, it is not just about meetings, dinners and fundraising, its about HOW WE SERVE. Lions, I am asking for your help, we need transportation, support and homes for some athletes and guides for the Goodlife Victoria Marathon 2014. I have been very fortunate to have the support from many Lion clubs and Past Presidents: Sid Scruggs III and the late Kay Fukashima. Chris and I proudly wore the Lions International logo and themes: "Beacon of Hope" and "I Believe" on the back of our race shirts to bring the Lions outside of the meeting room.
It is an opportunity to tell people about who we are and what we do. I look forward to your continuing support of the Running for Change Campaign. Together, we CAN make a difference. The sky's the limit. I am happy to bring the Running for Change Campaign here along with my move to Nanaimo. I would ask my fellow Lions to accompany me on my journey. Perhaps some of you might wish to support myself and my guide as we run the Comox half marathon tomorrow morning. My final words, a quote from Helen Keller: Walking with a friend in the dark is better than walking alone in the light. Thank you. (c)
Well, it has been awhile since my last post, maybe about a year. I had made some difficult choices in my life, struggling my personal demons and grieving with yet some more vision loss. I have left my marriage of 22 years. It has taken me nearly 15 years to bring myself the courage to move on. My fears were of so many things, losing my daughter, respect from others, especially my family, and myself. I talked to myself every day saying, have courage, be brave. There is one person in my life that helped me through this, he is the pillar of my strength. He understood my fears and tells me it is going to be okay. Dark thoughts and nightmares were starting to become less and less and fear grew into courage. Most of you that know me knows who my pillar is. Chris Morrison. We have been friends for long time, we met at a running club ten years ago. He has been guiding me for about 6 years. Oh how many times have I shed tears and talked about things that I have never shared with anyone. Many emotions, stories and fears were shared on the trails. What was happening? I was unleashing a part of me that no one has seen. For about 45 years I have been struggling with nightmares of unspeakable things. I have to figure out this trauma, was it real, or is it just images that plays in my head like a broken record? Unfortunately my mom passed away 14 years ago and I never had the courage to talk about it. I have a feeling that she would of been able to answer some of my questions, I think she knew. Perhaps it might be something that I will never know. I am still working on this thing called courage. In fact, this blog is a huge step for me. Moving out was a big step for me, and moving in was a big step for me. Trust, courage and to love again, big step! More blogs to come, it is a start <smile>.
Running Eyes Logo: Eyeball with blue body as guide and black body with arm on guide. Braille underneath saying Running Eyes.
Running Eyes is an online international community for VI/blind runners and guides. We share our experiences, advice and information. My guide Chris Morrison created this site a few years ago, hoping to bring guides and vi/blind runners together. Since the facebook page started, we have met many VI/blind runners at running events in both Canada and the US and had some great success in finding guides for VI/blind runners. I am very proud of Chris's accomplishment and is making a difference in the the eyes of running, pun intended. We are now nearly 250 members strong. With Chris's background in guiding (level 2 certified guide for 12 years) it is no wonder 'Running Eyes' is a success. It is inspiring to read about how they get on with their races, how they adapted, finding guides to run with, share their ideas and to be open to try new things. It motivates me everyday. You know what else I love about this? The guides!!! An unselfish act to help others pursue their goals and dreams in sports. You do make a difference and words sometimes cannot describe how much we appreciate your guiding eyes. I know this first hand, many years ago I was was depressed, overweight and scared of this journey of blindness. Eventually I found the courage to start. I started to walk, then run, followed a healthy diet and eventually lost 46lbs. As my vision worsened, I quickly learned to adapt to keep moving. I joined a local running club, there is where I met Chris. Believe it or not, my experiences as an athlete who depends on guides, helps me overcome my fears of going blind. It gives me hope and confidence to carry on, knowing there will some support. Next time you are running a race and you see a VI/blind runner, do not hesitate to ask us what it is like, what we see, how do you do it, what does a guide do, etc. We are always happy to answer your questions, in fact we thrive on it. My goal is to get as many VI/Blind runners to come join us at the Goodlife Victoria Marathon (1/2 Marathon and 8K). If this interests you, please visit or join our facebook page (click on to the Running Eye image on the OTHER STUFF page of this website and it will take you there). We would love to hear from you. Got to run now! xx