Welcome
Hello everyone, welcome to my website.
My name is Tom. I’m a 39 year old blind man, born and raised in a town called Fort Wayne Indiana. My mother had German Measles when she was pregnant with me, leaving me totally blind from birth.
The German Measles left a thick scar tissue around both eyes, that cannot be removed. I was also born with Nystagmus, bilateral aphakia, and optic nerve hypoplasia. At 18 months of age, the doctors were able to give me partial eyesight using various Cataract surgeries, called back in the old days, needling. I don’t remember many of these surgeries, but I remember them telling me it was like “trying to cut a tire with a butter knife”. What I remember them doing, is attempting to poke holes thru the scar tissue, allowing me to see a little bit afterwards. They weren’t able to achieve much, but any is better then none at all we figured.
Over the years, with more cataract surgeries I had done, my vision began to get better as the years went on. Seemed like with every new surgery, my sight kept improving a little more each time. At age 35, after my final eye surgery, I came down with Open Angle Glaucoma after all these repeated Lazer eye surgeries. Glaucoma is a slowly progressive disease, crippling the optic nerve, making it the second leading cause of blindness in the US today, next to Macular Degeneration. Once the optic nerve is gone, my sight will be gone too. Glaucoma is treatable, with eye drops and surgery, most of the time in a normal patient, Glaucoma is treated with surgery, but in my case, additional surgery would just make the condition worse. Glaucoma cannot be reversed, for you can’t grow back optic nerves, so what I’ve lost so far, I’ve lost forever. They’ve tried to slow it down with various kinds of mercury drops, but the end result will still be the same. The rest of my sight will be completely gone within the next few years. I am about 95% there right now. I no longer have central vision, and what I do see is all blurry, so about all I can make out are some shapes, colors, and light that’s about it, and as time goes on, it will just get worse.
Despite what all I’ve been thru, I don’t let any of this get me down. I am single, living alone, here in Fort Wayne. I’ve never had kids, but always wanted to. Maybe someday if the right girl comes along, who knows.
I’ve lived in Fort Wayne most all my life. My dad used to travel with his job, so my sister and brother were born in Atlanta GA where we lived for awhile when I was around 6 or so. I don’t remember anything before age 6 or 7. Mom said I didn’t speak until I was around 6, and when I did, I had speech impairment problems all thru grade school. I remember I was mentally slow too, had trouble keeping up in school with the rest of the kids. Part of that had to do with not being able to see the blackboard, but most of it, I think, is just from being a slow learner in general. Since being born with German Measles has side effects of blindness, deafness, and mental retardation, it doesn’t surprise me that I had speech impairment issues as a child. I’m just lucky that I didn’t go deaf, or become mentally disabled, like a lady down the street from me did, so for that I feel very fortunate. To listen to me now, you wouldn’t think I had a speech impairment at all, but its taken most of my adult years to work thru that. I still struggle with speaking clearly, and I have to really concentrate and speak slowly and softly to get the words out correctly, otherwise I would still stutter some. I still have these twitches, my family calls it my “excited thing” making silly jokes about it, but its an involuntary movement I cannot control, when I get overly excited about something. I was never officially diagnosed with anything, as most adults born with mental conditions aren’t, but a psychologist in Warsaw told me he’s pretty certain its a form of autism, probably high functioning, but still a level of autism. If that is the case, it would be a side effect of the German Measles as well. Congenital Rubella conditions like this also have various other side effects, it is unclear as to why, but for instance, I didn’t have teeth enamal in my baby teeth, and my big boy teeth grew in with very little, so I’ve never had very good teeth most of my life. Congenital Rubella babies also get high blood pressure early, as I did as well. They say 13 is the most common age to develop it, and thats when they first noticed it, so I’ve taken high BP since I was 14. The ones who have been researching it over in New York, link for more information, say it has something to do with an over active immune response from the Rubella virus still in the bloodstream, but that’s beyond my level of understanding.
On top of all that, I have a condition called Crohns Disease. They think its hereditary in my family, but nobody in my family has it as badly as I do, so that is also thought to be linked to a late manifestation of the German Measles. My aunt in her 60’s has colon problems, and my cousin Matt has Ulcerative Colitis, but even they don’t have as many of the symptoms as I do. Crohns is a life threatening chronic illness that infects the entire digestive tract, from the mouth to the anus. So far, my small, large, and rectum are all infected with both soars and holes in several spots thru the intestinal tract, so I suffer in alot of pain with that, trying to avoid an ostomy for as long as I can. As young as I am, an ostomy just isn’t practical. I started getting symptoms of Crohns Disease in my early teens. I can remember my dad giving me Medimucil for constipation, not realizing it was a start of a major illness that would affect the rest of my life. I was officially diagnosed with Crohns when I was 25 years old, after some scopes and a biopsy of some hemorrhoids I thought I had, but are actually part of the disease. Crohns is life threatening, because it affects the entire digestive tract, in most cases, keeping a person from digesting food, so as the disease worsens, it is life threatening, and because of that, I have to watch what I eat very closely, sticking to foods that are easy to digest.. When the doctor tells you, you have to start eating better, easier to digest foods, or you’ll die, well I take that very seriously. Its kinda hard to eat the way I’m supposed to, for whole easy to digest foods are really expensive, especially as much as I eat, so I don’t watch my diet as much as I should, but I have to consider my finances also and weigh out the risks accordingly. Since its debatable rather sticking to a healthy diet even helps Crohns Disease or not, I no longer stick to a strict diet, like I tried to for many years. I just can’t afford to anymore.
I’m a Big Brothers Big Sister volunteer, to a little boy who is mostly blind like me. I’ve attended Ivy Tech Community College for the last 20 years. I’m a League for the Blind and Disabled member, a workers for the Blind of the Fort Wayne chapter charter member. I also walk and help raise money every year for the Foundation Fighting Blindness. I was a volunteer walker at this years VisionWalk sponsored by Foundation Fighting Blindness. I will probably do that every year from now on, it was fun, and its for a good cause. I’m also a Blind bowler, a lions club member, and was a YMCA Volunteer for awhile until I moved here to Fort Wayne.
So as you can see, I stay busy. hehe. I’m currently unemployed at the moment, but I’m hoping to change that once an opportunity presents itself. The last place I worked at, was a local factory in Warsaw Indiana called KMC Corp. They used to call it Kendals Manufacturing Company, but they went out of business back in 2007, and I’ve been unemployed since then. I worked there for 10 years, and I worked at the local Hospital in Warsaw before that for several years also. In fact I worked 2 jobs for awhile while I was giving the other job my two week notice, so I’ve always been employed up until 2007 when the factory went out of business, which was most unfortunate, but its happening to alot of people nowadays with the economy and everything.
My only source of income right now is Social Security Disability, which as you know does not pay much, but God has blessed me with enough resources to get by for the time being. I am a member of Grace Point North Church of the Nazarene. I never miss a Sunday of church, if I can help it, even if I have to walk to a nearby church in the worst of weather, I will never miss a Sunday, for I have made God, the son, and the holy spirit the center of my life.
I don’t let my blindness stop me from doing what I need to do. When I lived in Warsaw, I walked 15 miles a day, between the grocery store, walmart, or Ivy Tech. I’ve walked in pouring down rain, 20 inches of snow, and the hottest of days, because I don’t use blindness as an excuse to keep me from what I need to do in my life. Thankfully, Fort Wayne has a city bus, that is free for me because I’m blind, but to take that, I still have to walk a mile down to the nearest shopping center, and a mile back, to catch the bus. I could have them pick me up at my house for $2 per way, per stop, but they require each trip to be scheduled 14 days in advance, so as you can imagine, who knows when there shopping for food 14 days in advance? so I don’t take them very often, not to mention the fact that $2 per way per stop adds up quickly, which I can’t afford to do very often, so I walk. I’ve had employers get mad at me for walking to work before, but the way I see it, who cares how I get there, as long as I work, am I right? So I never did understand their reasoning on that, so I quit one job because they gave me such a hard time about that, but as long as I do my job, isn’t that all that matters? I sure thought so anyway, otherwise they can pay me the extra money required to have me picked up, thats how I saw it anyway, so considering that was a volunteer job, that I wasn’t getting paid for, I just quit, because I wasn’t going to let them tell me how I got to work if they weren’t willing to pay me the money to get me vehicle transportation there.
Take care everyone, happy reading…
