Well, I didn't get that many questions, but I got a few. I am not sure if it is that you have no questions, or just are scared of asking them. But I will at least answer the few questions I got.
The first one is a question I like. I was asked: When did I found out that it was anosmia that I had. For me that is a great question, because the answer isn't that straight forward. It involves my past and it made me think of my childhood. When I was born, I was like everybody else(or so everybody thought), and I spent many years living a normal life. I am not saying I am living a not normal life now, but it has changed because of all the anosmia stuff. As I grew older, it caught my attention, that some things about scent and smell, seemed to deceive me. At first, I didn't think much about it. My brain couldn't understand that maybe I was unable to smell. I got thoughts that maybe I wasn't doing it right, maybe I had to learn a special technique. Maybe I just didn't pay enough attention or tried hard enough. But in the year 2004, the years I turned 10 years, it all changed. I was making candles from wax plates for christmas, and after working with it for a few hours with my mother, se said something, words I will never forget. She said: The wax smells really good, do you smell it? I was focusing on the work and just had a spontaneous response, so I answered "no, I can't smell it" without thinking. My mother stopped me and repeated the question. And I gave the same answer, even though I tried to smell the wax. That was the moment both my mother and I realized that I couldn't smell. So it took me 10 years to understand that. But the question was, when I found out that it was anosmia that I had. In 2004, I realized that I had no sense of smell, but I didn't know that I had anosmia. It took me another 6 years, to find out about anosmia. After understanding that I couldn't smell, my life changed in many ways. At first, I didn't tell anyone other than my parents. But it also made me depressed. I struggled a lot with the thought, and how this had impacted my life for so long, without me realizing it. But as the years went by, I started to tell my friends and family.
And last year, I was searching around on the internet, I came across the word anosmia. A word that opened a whole new world for me. I started to read page after page with information and I started to understand so much more of my life, and how I can live it best, with what I got. I found online communities and groups for anosmics. Even this blog has given me contact with a few anosmics.
So yeah, the short answer is, took me 10 years to understand that I couldn't smell. And last year I found out that my disorder was called anosmia.
Another question I have got is: how aware are you about smell in your daily life?
I try to be extremely aware on how I smell, and things I wear or use smell. Since I can't smell it myself, I give it my best shot not to smell. I hate the thought that I can walk a whole day, at school, work and in public, smelling like a public toilet, and not be aware of it. I try to be good with cologne and showers. I don't use the same clothes over and over again, without washing it. And all my friends and family help out with that. They know, that if I smell bad, they have to tell me. I don't get angry if someone comments on my smell, I am grateful for it. Because it helps me to get aware of the smell, so I can do something with it.
Every time I step outside the door, I wonder if I smell bad. I wonder if maybe I need a shower or more deodorant. Every day, every time. That is just how it is for me.
That is the questions I got. Not quite sure on what I was expecting, but I am glad I got some. And if you ever have a question, send me an mail, ask me on facebook, or face to face. I will always take time to answer questions. That is the whole reason for why I am writing. I want to raise awareness about anosmia.
Life is a challenge, but it is your job to do the best, with what you have got!
- Marius
søndag 19. februar 2012
mandag 13. februar 2012
Q and A
Figured I could take a little Q and A. I struggle to find subjects to write about, so I could use some help.
So! If there is anything you want to know, about me, about anosmia or my experiences, here is you chance. I'll answer just about anything, except really personal stuff. But as I have written about before, please think over your question. So I don't get many "dumb" questions. I appreciate if you think it out and come up with a good question. I'll answer it either way, but I'll appreciate the effort. Whatever you want to know, ask me, and I'll try to answer the best I can. I will try to answer all the questions (if I get any) in the end of the week.
This is your shot!
- Marius
So! If there is anything you want to know, about me, about anosmia or my experiences, here is you chance. I'll answer just about anything, except really personal stuff. But as I have written about before, please think over your question. So I don't get many "dumb" questions. I appreciate if you think it out and come up with a good question. I'll answer it either way, but I'll appreciate the effort. Whatever you want to know, ask me, and I'll try to answer the best I can. I will try to answer all the questions (if I get any) in the end of the week.
This is your shot!
- Marius
søndag 12. februar 2012
Food experiences!
I have tried to find interesting topics to write about, but it takes time. So that is why I haven't written in a while. But here it is! A new post.
This time, I wanted to write about experiences with food. When a "normal" person eat, they have a full experience of flavor. Me as an anosmic, I don't get the full deal. I get approximately 30% of it. The 70% that remain, is actually the smell and aroma of food, but your brain fools you. You may have noticed that when you have a really bad blocked nose, you can't taste anything. Actually you do! It's just that since you are used to the 100%, the 30% you are getting, is nothing in compare. That fact alone, raises a lot stupid questions for us with anosmia. Many people who remember these sort of experiences tell us, that we can't taste. To me, thats like telling a person with a broken arm, that it is amputated (bad example, but you get my point). First of all, I think we who have anosmia, can know if we can taste, better then the people who don't have anosmia. So just because you can't taste while having a blocked nose, doesn't that mean that we can't taste, just because we can't smell. At least for the ones like me, with CGA, we have never experienced anything more than those 30%. So for us, that is normal taste. Our taste buds are more sensitive over the subtile tastes in food. We can easier distinguish food from each other.
But in my case, that also means that I need more spicy food than my parents. Very often, when I finally enjoy a good, tasty meal, my mother is sitting next to me sweating. This is a dilemma I face often, and often loose. When I eat, the texture of the food is at least equally, if not even more, important than the taste. So I often eat food, that i barely can taste.
Another big problem for anosmics, are eating spoiled food. I can't even count the times I have eaten moldy bread or expired meat. It even happens that I drink old milk. Since we can't smell that the food is bad, it gets incredible easy for us to eat spoiled food. Most of us are aware of this, and try to prevent it, but we all make mistakes. No matter how hard we try, there will be days when we eat old food.
So, yeah. Enjoy you food! If you ever feel like your meal doesn't taste much, welcome to my world. Take popcorn as an example, I might as well eat the cardboard box. The taste is the same.
So don't tell us we can't taste, just because you can't taste something while having a blocked nose. We taste, just not in the same way like you!
- Marius
This time, I wanted to write about experiences with food. When a "normal" person eat, they have a full experience of flavor. Me as an anosmic, I don't get the full deal. I get approximately 30% of it. The 70% that remain, is actually the smell and aroma of food, but your brain fools you. You may have noticed that when you have a really bad blocked nose, you can't taste anything. Actually you do! It's just that since you are used to the 100%, the 30% you are getting, is nothing in compare. That fact alone, raises a lot stupid questions for us with anosmia. Many people who remember these sort of experiences tell us, that we can't taste. To me, thats like telling a person with a broken arm, that it is amputated (bad example, but you get my point). First of all, I think we who have anosmia, can know if we can taste, better then the people who don't have anosmia. So just because you can't taste while having a blocked nose, doesn't that mean that we can't taste, just because we can't smell. At least for the ones like me, with CGA, we have never experienced anything more than those 30%. So for us, that is normal taste. Our taste buds are more sensitive over the subtile tastes in food. We can easier distinguish food from each other.
But in my case, that also means that I need more spicy food than my parents. Very often, when I finally enjoy a good, tasty meal, my mother is sitting next to me sweating. This is a dilemma I face often, and often loose. When I eat, the texture of the food is at least equally, if not even more, important than the taste. So I often eat food, that i barely can taste.
Another big problem for anosmics, are eating spoiled food. I can't even count the times I have eaten moldy bread or expired meat. It even happens that I drink old milk. Since we can't smell that the food is bad, it gets incredible easy for us to eat spoiled food. Most of us are aware of this, and try to prevent it, but we all make mistakes. No matter how hard we try, there will be days when we eat old food.
So, yeah. Enjoy you food! If you ever feel like your meal doesn't taste much, welcome to my world. Take popcorn as an example, I might as well eat the cardboard box. The taste is the same.
So don't tell us we can't taste, just because you can't taste something while having a blocked nose. We taste, just not in the same way like you!
- Marius
lørdag 21. januar 2012
Something different...
Now, this post will be somewhat different from what I write usually. This time I will write about something many anosmics may struggle with especially in their early years, but this also concern so many others. It effects so many people worldwide and on some people, make a huge impact on their life. You can find it at schools, work and almost wherever you look. I'm talking about bullying.
Even as early as kindergarden, some kids get picked on. Some for no reason, and some for being different. And it is these kids, who gets picked on as early as in kindergarden, who keeps getting picked on when they start school. For some, it even keeps on going, to after school, work and even just by going outside. Some bullies go to so big lengths to make another person's life miserable. You can sometimes read about it in the newspaper, or hear it on the news. About kids who strike back at the bullies, and often gets their life even more ruined. Kids who commit suicide because of the bullies. This is how big of an impact bullying have on people. Of course, the stories you read about and hear on the news, is just a few of many. So many people struggle with their life, because there are people in it, who make it difficult. Now, as often as we hear these stories, we hear about solutions that the politicians and schools are enforcing. But the reality is, they can't stop it. There have always been bullies, and there will always be bullies! We just have to get better to take the bullies, and make them stop. Make them realize how much they are damaging the life of the one they are picking on. Now, very often people get picked on because they are different. So when you have an disorder like anosmia, bullies love that. If someone with anosmia, is willing to be open about their disorder and tell people what it is, very often there are people who will take advantage of it, and pick on that person.
I know this all to well. I have been struggling with bullies for 10 years. The 10 first years of my education, was years i spent, being bullied. Now, I am not saying I only was being bullied because of my anosmia. I know that is not true, because the first years, I didn't even know I had anosmia. Perhaps I was a strange little kid. Maybe I couldn't handle to be picked on very well. But why should that matter?! Why should a person be picked on, because they aren't like everybody else, in interest or other things? I think we should do more, to help the bullies, then the people who are being bullied! Not help them to bully others, but to help them fix their cause of having to bully others. Many people like to pick on others, to make themselves feel better. If they get help with themselves, maybe they don't have the need to make others feel miserable.
Now, living a bullied life can be difficult. I have first hand experience at that. When you grow up, being told you are no good, and whatever you try to do, someone is there to ruin it, you start struggling with low self-esteem. As far back as I can remember, I have had huge problems with my self-esteem. I couldn't raise my hand in class. I couldn't have lectures in front of the class, and much more. I am not trying to make my life sound so much worse then any others, but my point is that so many people struggle with these things. Bullying ruins life's!
Now, as I said, some people even commit suicide because of this. And also here, I have some experience. It's not something I am proud of, and not something I write about with ease, but I want you to know how much bullying can effect someone's life. I have struggled with suicide thoughts in the past. I have been dangerously close to ending my life. All this, because of the bullies in my life. Just that a handful of people, picking on a person and basically tormenting them, can destroy a persons will to live.
Today my story has changed, I no longer fight with those kind of thoughts and my life is better then ever. I am even so-what tankful for the hard times I have had, because that has thought me the value of true friends. I have now many friends and I don't get picked on anymore. I have got better self-esteem and now almost all my problems are gone. But it's not like this for everyone who struggle with bullies.
No one should have to endure this!
It has to stop!
- Marius
Even as early as kindergarden, some kids get picked on. Some for no reason, and some for being different. And it is these kids, who gets picked on as early as in kindergarden, who keeps getting picked on when they start school. For some, it even keeps on going, to after school, work and even just by going outside. Some bullies go to so big lengths to make another person's life miserable. You can sometimes read about it in the newspaper, or hear it on the news. About kids who strike back at the bullies, and often gets their life even more ruined. Kids who commit suicide because of the bullies. This is how big of an impact bullying have on people. Of course, the stories you read about and hear on the news, is just a few of many. So many people struggle with their life, because there are people in it, who make it difficult. Now, as often as we hear these stories, we hear about solutions that the politicians and schools are enforcing. But the reality is, they can't stop it. There have always been bullies, and there will always be bullies! We just have to get better to take the bullies, and make them stop. Make them realize how much they are damaging the life of the one they are picking on. Now, very often people get picked on because they are different. So when you have an disorder like anosmia, bullies love that. If someone with anosmia, is willing to be open about their disorder and tell people what it is, very often there are people who will take advantage of it, and pick on that person.
I know this all to well. I have been struggling with bullies for 10 years. The 10 first years of my education, was years i spent, being bullied. Now, I am not saying I only was being bullied because of my anosmia. I know that is not true, because the first years, I didn't even know I had anosmia. Perhaps I was a strange little kid. Maybe I couldn't handle to be picked on very well. But why should that matter?! Why should a person be picked on, because they aren't like everybody else, in interest or other things? I think we should do more, to help the bullies, then the people who are being bullied! Not help them to bully others, but to help them fix their cause of having to bully others. Many people like to pick on others, to make themselves feel better. If they get help with themselves, maybe they don't have the need to make others feel miserable.
Now, living a bullied life can be difficult. I have first hand experience at that. When you grow up, being told you are no good, and whatever you try to do, someone is there to ruin it, you start struggling with low self-esteem. As far back as I can remember, I have had huge problems with my self-esteem. I couldn't raise my hand in class. I couldn't have lectures in front of the class, and much more. I am not trying to make my life sound so much worse then any others, but my point is that so many people struggle with these things. Bullying ruins life's!
Now, as I said, some people even commit suicide because of this. And also here, I have some experience. It's not something I am proud of, and not something I write about with ease, but I want you to know how much bullying can effect someone's life. I have struggled with suicide thoughts in the past. I have been dangerously close to ending my life. All this, because of the bullies in my life. Just that a handful of people, picking on a person and basically tormenting them, can destroy a persons will to live.
Today my story has changed, I no longer fight with those kind of thoughts and my life is better then ever. I am even so-what tankful for the hard times I have had, because that has thought me the value of true friends. I have now many friends and I don't get picked on anymore. I have got better self-esteem and now almost all my problems are gone. But it's not like this for everyone who struggle with bullies.
No one should have to endure this!
It has to stop!
- Marius
søndag 15. januar 2012
Doctors... Those lovely doctors
Now, since anosmia is not a very usual disorder, the knowledge of doctors on the subject, reflects that. I have been back and fourth between some doctors for some years now. I have had two CT-scans and some other test. But just to get there, was a pain in the a** some times. I'm not sure how it is in other countries, but in Norway, anosmia is very unknown. My doctor once told me, that I am the sort of patient a doctor only gets once in a career. Which not actually helped my feeling of being alone. But that is how all the doctors I have met is, almost. Just by searching the internet for a few hours, I managed to find out some information, and my doctor didn't even know that! I had written down a few points on my phone, and basically sat at the doctors office and learned my own doctor about anosmia. At that point, I didn't have much information myself, but still. I think it's hopeless, that we go to doctors for help with sickness and disorders, and you can find more out yourself with a google search.
The second time I was at a specialist for ear, nose and throat, the first thing he said to me was. There's nothing I can do. There is nothing to do with this. He didn't even look at my file. He didn't ask me anything. I don't think he even said "hello" to me. He just blew me of and destroyed the last bit of hope I had built up since my last visit to the doctor. But in the time that has passed, I have accepted the fact, that I will never be able to smell. That is just how it is, and there is no point for me to be angry for it. If I at an age 17 start to get angry over that fact, I will grow up to be and angry and bitter man, and that's just pointless. But I think that the medical community have much to learn and to change.
You can sometimes read in the newspaper about a football club who bought a player for many millions of dollars. And still, there are many diseases and disorders who don't get the founding they need. I understand that there is an entertainment value and much money in sports, but why can't they at least put some of the money in to medical research instead. A single man is bought to a football club over 100 million dollars. And the medical research needs money. I don't see the logic in that. All the money used in football and other big sports. While 2% of the worlds population, lives with anosmia. That is approximately 140 million people worldwide. Maybe not a big number since we have crossed 7 billion people worldwide, but still a big number. Now the 2% that live with anosmia, is both congenital and acquired anosmics. If I am to consider the number for congenital anosmics, the number is even lower. Approximately 700 000 people are born without a sense of smell. There are cities much bigger than that. But just because there are few of us, I mean, we have the right to the same medical possibilities and offers as anybody else. I mean that we deserve, that research in anosmia receives founding. When people get anosmia, it can be the early sign of Parkinson's disease or Alzheimer's disease. So if there is done more research on anosmia, maybe we can get a better understanding on these diseases, which effect many people. Is there one thing I have learned while trying to find information about anosmia and things around this disorder, is that when it comes to medical research, the investors only put money, where they think they can make money. I understand that. There is not many people who will use huge sums of money to research something so little percentage have. But this is where I believe that governments or other funds or something should step in. Maybe there is not that much money to be made, but it may improve the life quality of the people who have anosmia. And isn't that what medical research, hospitals, doctors and medicine is all about? Not making money, but to help improving peoples life.
Now, as I mentioned, I have been back and fourth between some doctors and the hospital over the years. But I haven't got anywhere. A part of that, I think is because I live in Norway, a little country. Our medical technology is quite good here, but there is not many places for disorders like anosmia. I haven't found any. Not that I have tried so hard. I have been to my doctor many times, some of them by my own request. As I learn new things about anosmia, I go to my doctor and discuss them with him. I have been to a specialist two times, but the first was only to check for polyps, which can be a reason for anosmia, and the other was just to check my options. I have had two CT-scans, and I am not entirely sure what they were looking for. But all in all, I have got just as much information from that, as I have from the internet by searching on my own. One of my dreams, is to go to the US and find a research facility or a specialist who may know more then the doctors here in Norway. I want to try to help out with what I can. I will gladly take part in experimental treatments and so much more. Cause as I figure it, what have I got to lose? My sense of smell? I hope, that when I get a little older, I will make a difference in the anosmic world. I hope that there will someday be, maybe not a cure, but at least a treatment who can help the acquired anosmics. People like me, is a different case.
I was born without the nerves in my olfactory system. So the signals from my nose, can't get to my brain. There is no way to treat that. They can't make my nerves grow inside my nose. But maybe there will someday be a treatment who can help unborn children, who are still developing, get the nerves grown, from medical technology. If a fetus is about to become a child with anosmia, maybe a treatment will help the child grow what it needs. It is sort is a help to mother nature.
Might sound like a silly dream, but we are all allowed to have our own dreams! But I hope there will someday be more available information about anosmia. More trained doctors on the subject and more treatments.
We all have dreams.
Mine is to help anosmics as best I can!
- Marius
The second time I was at a specialist for ear, nose and throat, the first thing he said to me was. There's nothing I can do. There is nothing to do with this. He didn't even look at my file. He didn't ask me anything. I don't think he even said "hello" to me. He just blew me of and destroyed the last bit of hope I had built up since my last visit to the doctor. But in the time that has passed, I have accepted the fact, that I will never be able to smell. That is just how it is, and there is no point for me to be angry for it. If I at an age 17 start to get angry over that fact, I will grow up to be and angry and bitter man, and that's just pointless. But I think that the medical community have much to learn and to change.
You can sometimes read in the newspaper about a football club who bought a player for many millions of dollars. And still, there are many diseases and disorders who don't get the founding they need. I understand that there is an entertainment value and much money in sports, but why can't they at least put some of the money in to medical research instead. A single man is bought to a football club over 100 million dollars. And the medical research needs money. I don't see the logic in that. All the money used in football and other big sports. While 2% of the worlds population, lives with anosmia. That is approximately 140 million people worldwide. Maybe not a big number since we have crossed 7 billion people worldwide, but still a big number. Now the 2% that live with anosmia, is both congenital and acquired anosmics. If I am to consider the number for congenital anosmics, the number is even lower. Approximately 700 000 people are born without a sense of smell. There are cities much bigger than that. But just because there are few of us, I mean, we have the right to the same medical possibilities and offers as anybody else. I mean that we deserve, that research in anosmia receives founding. When people get anosmia, it can be the early sign of Parkinson's disease or Alzheimer's disease. So if there is done more research on anosmia, maybe we can get a better understanding on these diseases, which effect many people. Is there one thing I have learned while trying to find information about anosmia and things around this disorder, is that when it comes to medical research, the investors only put money, where they think they can make money. I understand that. There is not many people who will use huge sums of money to research something so little percentage have. But this is where I believe that governments or other funds or something should step in. Maybe there is not that much money to be made, but it may improve the life quality of the people who have anosmia. And isn't that what medical research, hospitals, doctors and medicine is all about? Not making money, but to help improving peoples life.
Now, as I mentioned, I have been back and fourth between some doctors and the hospital over the years. But I haven't got anywhere. A part of that, I think is because I live in Norway, a little country. Our medical technology is quite good here, but there is not many places for disorders like anosmia. I haven't found any. Not that I have tried so hard. I have been to my doctor many times, some of them by my own request. As I learn new things about anosmia, I go to my doctor and discuss them with him. I have been to a specialist two times, but the first was only to check for polyps, which can be a reason for anosmia, and the other was just to check my options. I have had two CT-scans, and I am not entirely sure what they were looking for. But all in all, I have got just as much information from that, as I have from the internet by searching on my own. One of my dreams, is to go to the US and find a research facility or a specialist who may know more then the doctors here in Norway. I want to try to help out with what I can. I will gladly take part in experimental treatments and so much more. Cause as I figure it, what have I got to lose? My sense of smell? I hope, that when I get a little older, I will make a difference in the anosmic world. I hope that there will someday be, maybe not a cure, but at least a treatment who can help the acquired anosmics. People like me, is a different case.
I was born without the nerves in my olfactory system. So the signals from my nose, can't get to my brain. There is no way to treat that. They can't make my nerves grow inside my nose. But maybe there will someday be a treatment who can help unborn children, who are still developing, get the nerves grown, from medical technology. If a fetus is about to become a child with anosmia, maybe a treatment will help the child grow what it needs. It is sort is a help to mother nature.
Might sound like a silly dream, but we are all allowed to have our own dreams! But I hope there will someday be more available information about anosmia. More trained doctors on the subject and more treatments.
We all have dreams.
Mine is to help anosmics as best I can!
- Marius
torsdag 12. januar 2012
Anosmia Awareness Day
A little while back, while I was searching the web for information about anosmia, I found this page on Facebook. Its called Anosmia Awareness Day. It's it the 23. February this year, and the the goal is to raise awareness about anosmia. The same thing I wish to achieve with this blog. There is over 1000 people invited to this event, but only 189 people are attending. I think this is so sad. I am glad there are non-anosmics out there who supports us, but there are some who are just plain cruel. Like this one girl, she posted on the event "What the heck is amosmia its not even. Real word??", How can a person write this, when the explanation about what anosmia is, is written in the description of the event? But, back to the point. The event is created by Daniel Schein. In my opinion, a great person! He tries to make the global knowledge and awareness about anosmia greater. The hope is that as many people as possible will wear red on the 23. February 2012. One of the hopes is to get some media attention, to get information and just the name anosmia out to people. So please, support this event. Wear red on the 23. February. Here is a link to the event, if you want to participate: http://www.facebook.com/events/225528220844596/
As I have written here before, I am a part of two online communities for people with anosmia. The first one I found was a group for us with congenital anosmia. Which means we are born with the disorder. The group was made by Kathryn Snyder LaFleur. A person who I owe a lot of thanks. Because of this woman, I found a place to talk to people in my own situation. Before I found this group, I was alone as an anosmic, in my head. I had never heard of anyone in the same situation as me. The doctors I have talked with over the years, knows less then I do about anosmia. They had never had a patient like me. So as far as I knew, I was alone. After 16 years alone, here it was. Now I don't mean that I was alone in life, but I had always had a slight feeling of being alone, since everybody else around me could smell. A group with others like me. When I joined the group, we were just over 100 people, now we are 122. So we are few, but thats the thing about congenital anosmia. There is not many of us. When I found the group, I struck down with tears, not my proudest moment perhaps, but the feeling of not being alone anymore, was overwhelming. All the people on the group have helped me to live with my anosmia. Just to know that there are more like me and to be able to discuss so many things with these people. It have made such a strong impact on my life. We discuss problems and experiences, thoughts and hopes. We give each other help with questions and, to me, are like a family. Even though we are spread across the world, I know some people have met up, had lunch and become friends. I sadly don't have this possibility, because I live in Norway, and I haven't found any other people with congenital anosmia here. I am pretty sure there are some here, but i can't find them. But I can not put in to words how glad I am I found this group. It has opened a whole new world for me.
Some months later, I found another group. The group is called "Anosmics of the world, unite!" and was created by Peter Lembcke. Another person who I owe thanks. This group has 693 members. That is almost 700 people with the same disorder as me. And since this is a group for people with acquired anosmia and congenital anosmics, there is a much bigger variety of people. But the feeling is the same. We discuss experiences and so much more. The only thing that is different, is that some of the people in the group talk about "phantom" smell. That is when all you smell all the time is things like smoke and burnt grass. It is your brain trying to work around the anosmia or something, I am not quite sure how it works. This is something that only effects acquired anosmics. I read about people who lost their smell for 2 years, but then it gradually started to come back, I read about people who miss certain smells, and I read about how people got anosmia. But all in all, we are all the same. We are the little percent of the population, who experience the world, scentless.
Now, for the final person I will mention in this post. Michelle Krell Kydd. She has a blog, http://glasspetalsmoke.blogspot.com/, where she sometimes write about anosmia. She has helped me so much with what she has written, to understand my condition more, and to accept it more. She is posting new articles and information all the time and really helping out the community in my opinion. She really fights for our cause.
Now as the final thing in this post. I want to thank all of the people who are taking the time to read my blog. I have got a lot of good response, both from friends, and people I don't know. It mean incredibly much to me, that people are willing to read what I am writing. Cause that means that people are learning about Anosmia! I have got questions from people who have known me for years, but didn't know of my anosmia. People in my class and people around me tell me that they read what I write. That makes me without words. The only thing I can think of writing is, thank you. It means so much to me, and I hope it also makes a difference to the anosmic community. We are here, and in my opinion, we have the same voice as every one else. So if you get the chance, listen, you might learn something or think of something you didn't think of before.
But, once again. Thank you all for reading this blog. Over 270 people have read this. And when I made it, I was hoping for maybe 50 people in total. But I also hope you take in, what you are reading. I hope you might learn something and maybe see things a little different perhaps. And remember, Anosmia awareness day, 23. February. Try to wear red and inform anyone who will listen, about anosmia.
- Marius
As I have written here before, I am a part of two online communities for people with anosmia. The first one I found was a group for us with congenital anosmia. Which means we are born with the disorder. The group was made by Kathryn Snyder LaFleur. A person who I owe a lot of thanks. Because of this woman, I found a place to talk to people in my own situation. Before I found this group, I was alone as an anosmic, in my head. I had never heard of anyone in the same situation as me. The doctors I have talked with over the years, knows less then I do about anosmia. They had never had a patient like me. So as far as I knew, I was alone. After 16 years alone, here it was. Now I don't mean that I was alone in life, but I had always had a slight feeling of being alone, since everybody else around me could smell. A group with others like me. When I joined the group, we were just over 100 people, now we are 122. So we are few, but thats the thing about congenital anosmia. There is not many of us. When I found the group, I struck down with tears, not my proudest moment perhaps, but the feeling of not being alone anymore, was overwhelming. All the people on the group have helped me to live with my anosmia. Just to know that there are more like me and to be able to discuss so many things with these people. It have made such a strong impact on my life. We discuss problems and experiences, thoughts and hopes. We give each other help with questions and, to me, are like a family. Even though we are spread across the world, I know some people have met up, had lunch and become friends. I sadly don't have this possibility, because I live in Norway, and I haven't found any other people with congenital anosmia here. I am pretty sure there are some here, but i can't find them. But I can not put in to words how glad I am I found this group. It has opened a whole new world for me.
Some months later, I found another group. The group is called "Anosmics of the world, unite!" and was created by Peter Lembcke. Another person who I owe thanks. This group has 693 members. That is almost 700 people with the same disorder as me. And since this is a group for people with acquired anosmia and congenital anosmics, there is a much bigger variety of people. But the feeling is the same. We discuss experiences and so much more. The only thing that is different, is that some of the people in the group talk about "phantom" smell. That is when all you smell all the time is things like smoke and burnt grass. It is your brain trying to work around the anosmia or something, I am not quite sure how it works. This is something that only effects acquired anosmics. I read about people who lost their smell for 2 years, but then it gradually started to come back, I read about people who miss certain smells, and I read about how people got anosmia. But all in all, we are all the same. We are the little percent of the population, who experience the world, scentless.
Now, for the final person I will mention in this post. Michelle Krell Kydd. She has a blog, http://glasspetalsmoke.blogspot.com/, where she sometimes write about anosmia. She has helped me so much with what she has written, to understand my condition more, and to accept it more. She is posting new articles and information all the time and really helping out the community in my opinion. She really fights for our cause.
Now as the final thing in this post. I want to thank all of the people who are taking the time to read my blog. I have got a lot of good response, both from friends, and people I don't know. It mean incredibly much to me, that people are willing to read what I am writing. Cause that means that people are learning about Anosmia! I have got questions from people who have known me for years, but didn't know of my anosmia. People in my class and people around me tell me that they read what I write. That makes me without words. The only thing I can think of writing is, thank you. It means so much to me, and I hope it also makes a difference to the anosmic community. We are here, and in my opinion, we have the same voice as every one else. So if you get the chance, listen, you might learn something or think of something you didn't think of before.
But, once again. Thank you all for reading this blog. Over 270 people have read this. And when I made it, I was hoping for maybe 50 people in total. But I also hope you take in, what you are reading. I hope you might learn something and maybe see things a little different perhaps. And remember, Anosmia awareness day, 23. February. Try to wear red and inform anyone who will listen, about anosmia.
- Marius
mandag 9. januar 2012
It's hard
A thing I often hear when I tell people that i can't smell, is that is can't be that hard. But that is just the thing. It is hard, and it can be dangerous too. People are so good at taking there sense of smell for granted. It's like this invisible thing that you don't think much of, until it's not there anymore. Smell is such a big part of your day, but you give it suck little thought. It is almost like a spoiled little kid with much money, they don't think on all the hard work that has gone in to making that money. They don't understand how it is, until they start working themselves. That is how I feel it is for most people today, you never consider how lucky you are, being able to smell. Ever since i realized that i can't smell, there has not been a day, that i have not thought about my lack of smelling. I think about it every day, that I am anosmic, and that I will never smell a thing in my life. As I mentioned, it also can be dangerous. Smell is associated with danger in many cases. If you live alone, or are staying home alone, and there is a fire while you are sleeping, you are as good as dead. When you are anosmic, you are unable to smell the smoke filling the room while you are sleeping. You can imagine the result. Also if there is a gas leak. All gas used in homes and construction and stuff like that, is mixed with a smelling agent, so that you can smell when there is a leak. Just by forgetting to turn of the stove, anosmics are risking their life. We can't detect the gas, until it is to late. This are common dangers for anosmics, but there are also things that is not lethal, but highly irritating. We can't detect spoiled food. I have found myself eating molded bread more times than I can remember. I am good at checking dates on food and looking for mold, but I still make mistakes. Luckily, i have not tried to drink old milk yet, but I now some anosmics have. These are just some of the things that make living with anosmia difficult. So please, if you are about to tell an anosmic person that it can't be that bad, don't. This is a situation were I actually can say, you can't now how it is, until you are knee deep in it.
Now for a more personal story from me. Well, it's not a story, i guess. More of a realization that i don't like. Since I can't smell, I will never be able to tell my girlfriend/wife that she smells good. I can tell her, but it will be a complete lie. I don't now what smelling good means! If i lend my jacket to the girl I love, when I get it back, I can't smell it to remember her. Important people in my life, that pass away, i can't remember their smell. I've learned that one thing that many people remember about people that have passed away, is their smell. I can't do that. When I get kids, I won't be able to smell my kids, maybe a weird thought, but i've thought it. There is so many things to experience, much of it with someone else. And I am missing out. When I get old, I can't think of old memories, because a scent reminded me of an old memory.
Every time I step outside, I wonder if I smell. I am always insecure about being around people in case I smell, and no one tells me. My friends who know about my disorder, will tell me if I smell, because they know that is what I want. I want to be told if I smell bad, instead of walking around smelling like a trash dump. Same goes for my clothes, I have to be good at changing clothes, because i can't detect if my clothes smells bad. I can keep this going, but you get the point. All the "little" things you take for granted every day, bothers me, every day. It makes me almost scared of going outside amongst people. In my room, if there is a foul stench, I can't tell. There was one time, my dog pissed under a chair I had in my room. It wasn't until a month or so later, when I moved the chair, I could see the stain. These are things I struggle with every day. And you don't make it any easier by telling me my life is easy. You don't make it easier by stuffing my face with things that smells bad and treating my disorder like a circus act. I am glad to prove that i can't smell, but not of you just want to see because you think it is funny to watch me smell your gym socks or shoes. And I will prove it once. ONCE. You don't need me to show you several times that my nose is nothing more than a sort of hood ornament for my face.
Think of what you do and say!
- Marius
Now for a more personal story from me. Well, it's not a story, i guess. More of a realization that i don't like. Since I can't smell, I will never be able to tell my girlfriend/wife that she smells good. I can tell her, but it will be a complete lie. I don't now what smelling good means! If i lend my jacket to the girl I love, when I get it back, I can't smell it to remember her. Important people in my life, that pass away, i can't remember their smell. I've learned that one thing that many people remember about people that have passed away, is their smell. I can't do that. When I get kids, I won't be able to smell my kids, maybe a weird thought, but i've thought it. There is so many things to experience, much of it with someone else. And I am missing out. When I get old, I can't think of old memories, because a scent reminded me of an old memory.
Every time I step outside, I wonder if I smell. I am always insecure about being around people in case I smell, and no one tells me. My friends who know about my disorder, will tell me if I smell, because they know that is what I want. I want to be told if I smell bad, instead of walking around smelling like a trash dump. Same goes for my clothes, I have to be good at changing clothes, because i can't detect if my clothes smells bad. I can keep this going, but you get the point. All the "little" things you take for granted every day, bothers me, every day. It makes me almost scared of going outside amongst people. In my room, if there is a foul stench, I can't tell. There was one time, my dog pissed under a chair I had in my room. It wasn't until a month or so later, when I moved the chair, I could see the stain. These are things I struggle with every day. And you don't make it any easier by telling me my life is easy. You don't make it easier by stuffing my face with things that smells bad and treating my disorder like a circus act. I am glad to prove that i can't smell, but not of you just want to see because you think it is funny to watch me smell your gym socks or shoes. And I will prove it once. ONCE. You don't need me to show you several times that my nose is nothing more than a sort of hood ornament for my face.
Think of what you do and say!
- Marius
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