Note: This was originally written between 2000 – 2004.
My name is Tyler Wilson and i am almost 7 years old. I am sitting writing this letter (with the help of my mom) to tell you how great my dad is. When my mom asked me why i thought my dad was the best, i said there is no reason, he just is! Actually, i would like to tell you exactly why he is so special. My dad’s name is Paul Divitt Wilson (i have the same middle name) and he just turned 30 years old. My dad has diabetes and he has since he was 11 years old. He has to take 6 needles a day to take insulin (ouch!). My dad cares about me so much and did even before i was born. You see he didn’t know if he wanted children because he didn’t want to take the chance that i might have diabetes. He didn’t want me to go through what he has to. But after talking to doctors they assured him the chances were slim and well here i am! But recently my family experienced the worst of diabetes. For the past 2 1/2 years my dad has been going through laser surgeries because he bleeds behind his eyes from the diabetes. But he remained an otherwise healthy man. My mom and dad decided to buy their first home and moved from the city to the country in August of 1999. But a month later my dad had to have major eye surgery because his retina detached from his eyeball and he couldn’t see out of it. Because of the surgery he became really ill and he couldn’t work for 2 1/2 months. But through all of this he remained my loving, caring, funny daddy that always has time for me. When he could play with me he would but he always had time for cuddles and laughs no matter how sick he felt. My mom kept working long hours because we needed the money and would come home and then look after my dad and I. When my dad got better he went back to work even though the doctors told him not to. They told him not to lift anything over 5lbs (he was a renovator) because it could happen again. But Christmas was coming and he knew we needed the money. That year I got spoiled as usual but my mom and dad didn’t buy anything for each other and I didn’t have any money to buy them anything either. Things went well for a while even though my dad was now blind in that eye. Then on Easter monday 2000 early in the morning my dad woke up and he could barely see out of his other eye. So we went through surgery again but my dad could not return to work this time. He did get a limited amount of sight back in that eye and that was enough to make him happy. My mom and dad have been together 10 years but were not married, so they decided to get married on August 19,2000 because my dad wanted to be able to see my mom come down the aisle. This was a busy time and I was so excited we were having a wedding day. Everybody was so happy until 9 days before the wedding. My dad woke up and the last bit of vision he had was gone. He was now completely blind. My mom was devastated but my dad remained happy and continued to make us smile. Not only that but he had to have emergency surgery 3 days after the wedding and their honeymoon plans had to be changed. So they got married but my dad was only able to see a faint outline of my mom coming down the aisle in her wedding dress but all details about the wedding went unseen for my dad. My mom and dad spent two nights in Niagara Falls and drove back Tuesday morning right to Oshawa Hospital and spent the remainder of their honeymoon there. Through all of this my dad still had a smile on his face and never let me see that he was scared. The day after he got out of the hospital he opened a sugar free food store for diabetics hoping he could help other people not get to the stage he had with his diabetes. The grand opening was held with a charity bbq to the diabetes association as well as proceeds from the sales in the store going to the CDA as well. He also offered a 10% discount on a daily basis to all CDA members. My dad ran the store on his own from cash to ordering to stocking shelves all the while not able to see a thing. We live in a small town and business wasn’t enough to keep it going and my mom couldn’t afford to support the house and the store. We had to close it New Years Eve. But once again dad still smiled and said if I made the difference in one person’s life by showing them what happens when you don’t look after yourself, then it was worth it. It’s been 10 months now since my dad went blind and it still doesn’t stop him. He now has a talking computer where he can go on the internet and the computer reads everything on the screen to him. If I have homework and I need help my dad can scan it so the computer will read to him so he can help me. My dad also came to my school to talk to two grade two classes who were learning about senses. He taught them what it is like to live without one of the them. The kids thought he was cool and ask me stuff about him all the time. Sometimes I get sad for my dad and he asks my whats wrong so I tell him and he makes me happy again. But I don’t ever remember having to make him happy, he just always is. Just in the past month my dad has put a new sink in our bathroom, laid a new floor in our house, put together our BBQ and built a dog pen in our backyard. Nothing stops my dad! The only time I see my dad get upset is when he talks about money. We haven’t had much since it is only my mom working but dad always seems to have some for me when I know he does without. I can’t remember the last time my dad got something he wanted and my mom tells me there won’t be much money for father’day so that’s why I’m writing this letter. In my mind, there is no man in the world better than my daddy. He may not be able to read to me or go bike riding but when it comes to love I couldn’t get more. He may not be able to see my smile but he knows it’s there when he finds my tickle spot or tells me how proud he is of me or when I score a goal at hockey. He always makes light of his blindness and he’ll keep you laughing for hours with his new found blind jokes -like- a blind guy walks into a bar with his guide dog – he picks the dog up by the tail and starts spinning the dog around in the air. The bartender walks over and asks him what he thinks he’s doing. He replies – I’m taking a look around. This is my favorite joke. My dad likes people to ask questions about his blindness so he can educate them. He also said that he doesn’t want to be treated any differently than he was before. Anyways, I feel my dad is the best in the world to have overcome all he has in such a short time at such a young age and still love life the way he does. For once I would just like him to have some money to spend on himself and enjoy spending it without having to worry about it. I can only hope you read this letter and feel the same way about my dad that I do. He’s the one, the only and the best and I love him infinity (our little joke). Happy Father’s Day Daddy!! I LOVE YOU!!! (oh yeah so does mommy)
Her children are grown and living on their own, but Bonnie Lorensen has a new addition in her household. She’s two-and-one-half, furry, black and she offers the Kirkland native a renewed sense of independence. The new addition is her leader dog, Tess.
Diagnosed with retinitis pigmentosa at age 22, Bonnie traveled a long road before she was ready to accept the assistance of a four-legged companion.
My name is Dawn Marie (Magooser), on the badeyes list. I found out I had R.P. at the age of 26. I have an older brother who has R.P. as well, but no one ever thought I had it. One day I was reading and I noticed “blank” areas, small and snakelike. A few months later I saw a doctor who said I “probably” had R.P. I figured he was full of shit. In the next few years I couldn’t get a “true” diagnosis and I ignored my eyes. I had increased vision loss, but only in my right eye. I decided to have two kids and hope for the best. Then in 1999 I went to my eye doctor and he said I was legally blind and should not be driving. Boom! just like that . I couldn’t believe it, and went to a specialist who also said I should quit driving. This meant I had to quit work as well. I applied for social security, and after a year, I finally got it. I hope to go back to school when my kids are older. Right now, I thank God for the opportunity to be at home with my children, I couldn’t afford to otherwise. My youngest will be 2 in January and he had to get glasses last month. At first doctors thought we had a recessive gene in our family, which meant my kids should be O.K. But my niece found out in August she has it too. Now the doctors say it is a dominant gene. I have a strong feeling my son will have R.P. as well, and I am trying to deal with that now. I will not have him tested at his young age and I will try not to think about it
My name is Patti, I am a twenty seven year RP veteran. I was told I had a bit of an abnormal condition with my eyes and was advised to see a specialist. But I was eighteen at the time and it had no impact on me. I had no problems seeing. Although night driving, even then, was somewhat of a challenge.
I was diagnosed with RP in the late 70s when I was 26 years old. I suspected something was wrong after my son was born. I noticed that I had trouble backing my car up and judging distance. It was ever so slight, so I just put it out of my mind.
HOW RP CHANGED MY LIFE – FOR THE BETTER
I was diagnosed unexpectedly with Retinitis Pigmentosa at age 34, three days before Christmas of 1998. I had gone to the optometrist thinking I needed mild glasses for night driving, and instead walked out with the shocking diagnosis of sporadic RP.
I was 18 years old when I began to notice little floaters and my parents began to notice that I was tripping over things. I went to several doctors in both Calgary, where I was living, and in Ottawa, where I moved at age 19. I was finally diagnosed with RP in Kingston when I was 21. It was somewhat of a relief to know that it “wasn’t in my mind” as some had suggested. I was referred to an opthamologist in Ottawa who immediately told me I was legally blind and must stop driving. Of course I felt I could still drive, and continued to do so during the daytime for a few years. At the time I was employed as a secretary at City Hall in Pembroke, Ontario and had a new sports car. Up until that time my life was happy and I was untouched by the grim realities of the world. I decided that I could no longer work as a secretary. I sold my car and quit my job and returned to university where I got an undergraduate degree in law with a concentration in criminology and criminal justice. I married and became employed as a probation and parole officer. I was still driving and life was great. I forgot about my problem until it started deteriorating further. When I quit driving I was confined more to the office and I became very frustrated. I had difficulty with paperwork and in concentrating. After my daughter was born in 1994 I was exhausted and became depressed. I worried that I might not be a good mother because of what I thought were my limitations. I left work in 1995 and thankfully had a long term income protection plan. I remained quite depressed and felt isolated after leaving work. As a Christian I felt guilty that I could not see the good things in my life. In 1997 I decided to get on with life and started some rehabilitation with the C.N.I.B. Then my dad was diagnosed with prostate cancer, two weeks later my horse died, two weeks later my husband was diagnosed with malignant melanoma, then during my dad’s lengthy hospitalization in Ottawa my mom had heart problems and was hospitalized in Pembroke. Through all of this I became a walking zombie but my brothers and sister continued to help me with my burdens and said they would always look after me. In November 1997 my youngest brother, with whom I was especially close, was killed tragically in a car accident. For over a year the grief consumed me ….but I sure put my RP in perspective. He did alot of fundraising for RP and always tried to get me to see the positive things in my life. During the last couple of months I have felt stronger..from my faith in God, the prayers of others, and I think strength from my brother. I still hate the fact that I can’t drive but I’m beginning to enjoy life a bit more now. I have recently purchased another horse who is trained by voice commands. Her previous owner is completely deaf and she’s the most positive and energetic person I have ever met. I only have to watch the horse’s ears with my tunnel vision and she’ll do the rest. I know I’ll start to feel more independent and alive again. My brother’s death has taught me that having RP certainly isn’t the worst thing that can happen to a person. I have recently returned from a trip to Toronto to see my opthamologist at Sick Kids and found out my field has narrowed again. I’m not even upset!!!”I can do anything through Him who gives me strength.”
life seems to have taken a whole new direction.I suppose this began about 6 months ago when I woke up to the fact that I have a peculiar “condition”, not a disease as far as I am concerned nor do I refer to it as a problem. Just this condition. A condition that requires thought and caution in an ordinarily simple regime of day to day life.A condition that also needs some of my attention to try to understand what is going on, and to consider the various options open to me as a newly labeled “disabled” person.
My mother was diagnosed with RP when she was 48. At the time I was 24 serving in the Air Force in the Far East and she contacted me, suggesting I was checked. A quick check with a flashlight was clear that I didn’t have it’ 5 years later, after leaving the Air Force, I noticed I walked in to things a lot. I went to the Oculist who diagnosed RP and small cataracts. He sent me to Toronto General for tests. The tests proved conclusive. The Oculist told me I shouldn’t be legally driving as I had less than 120 degrees vision but it wasn’t much less. I was working for a company as Field Service Manager, responsible for installation and maintenance of Hospital X-Ray equipment and CAT Scanners over 1/2 of Ontario. So I was constantly driving. The Oculist died and I had to find a new doctor. After several months of avoiding doctors in case it would mean losing my license I found an opthamologist. My cataracts were causing me so much problem I had no choice. In 1997 I had driven to Florida on vacation (from Toronto) and the sunlight was painful because of the cataracts. I was referred to a younger Opthalmologist who did regular lens implants. He performed one in October 97 and the second in January 98. He noted I had RP and arranged a dreaded field test in Nov 97. I had 4 deg. of peripheral vision in my left eye, and 2 deg. in my right. He told me that he would let the MOT know and they would jerk my license (which they did two months later). My peripheral eyesight had deteriorated very rapidly in the last 6 months of 97 (after returning from Florida). I had all but stopped driving, as I didn’t feel safe. The doctor said I wasn’t considered legally blind because my eye sight had to be worse than 20/200 OR less than 20 deg. peripheral vision AND worse than 20/70. (I had 20/30 both eyes). I told him he was wrong and eventually he checked with the CNIB, who told him I was legally blind. I was now working for another company as Systems Engineer, designing remote (solar) power systems. We traveled all across Canada and sometimes overseas. To the top of mountains in helicopters and off road driving. The company was concerned about my lack of sight, especially as I had to travel and work around heavy equipment, and in the company warehouse. In August 1998 I was put on disability to (a) Eliminate a liability to the company and (b) Enjoy life whilst I had some usable vision. My mother went blind at 75 years old. My aunt and cousin also have RP as did my late uncle. Am I mad, bitter, angry. NO I am not, I enjoy the fact that I have my mobility. There are many things I can’t do but there is an awful lot I can. I am not terminally ill. It may be many years before I lose all my sight (heck I could die first). I focus on what I can do today and let tomorrow take care of itself. As a Christian I don’t believe God screws up. He will meet my needs in a physical way just as he has spiritually. I get frustrated at times but as a general rule I believe God is giving me contentment in this trial’