Growing up different!

I am mad as hell. I have the most common inherited neuropathic disease there is and no one has ever heard of it and it is called Charcot Marie Tooth. Isn't there something wrong with that? One in 2,500 american s have this disease and I bet you have never heard of it have you? Apparently no one famous has this disease or if they do they haven't told anyone that they have it. Which is actually very common with people who have this disease, we can almost pass for normal (if you don't go hiking or do something that requires physical dexterity) if someone isn't real observant or doesn't ask personal questions. The reason we don't talk about our disease a lot goes to the horrible problem that we all have to deal with, that problem is that being different is not a good thing! We are taught this from the time we are children in grade school and we got made fun of because of our physical weakness. I was always the slowest person around the track, I couldn't pull my weight up with my hands on the monkey bars but because when you looked at me I didn't look that different no one understood what was going on and trust me, neither did I. The problem with this disease is that you are not just different, life if you are gay you are different but you are not disabled. The cruel truth of Charcot Marie Tooth is that you can look the same as everyone else but you are crippled physically and kids will make fun of you no matter what the reason is that you are "different". I spent my whole childhood trying to do as many things as the rest of the kids could do physically. The only salvation I had was that I was smart so at least I could excel in that area and I became  book worm because it was my world to escape to. I do believe that growing up different is bad for everyone who feels they are different, no matter how big or how small the difference is, it is apparent to me that if you feel different you are different but there is a reality that having a physical handicap by all rights should be a worse problem to deal with that thinking you look weird or different than someone else. I do believe from watching what happens with screwed up people that they seem to have as many problems as people who can barely walk but I have a lot of trouble understanding it. I would give anything to be able to walk up stairs without pulling myself up one stair at a time and then I read about someone who can't deal with not being beautiful. I would give all of my looks for the ability to physically function. Maybe all disabilities are the same in that they are disabling but I would give every thing I have to be ugly and be able to walk. I have a lot of trouble understanding how someone can be so screwed up over some of things they are when the rest of us are just struggling to put one foot in front of the other one, literally! If I am missing something please enlighten me as I spend my whole day trying to physically get to the store and buy my own groceries so I can live. Since I have been disabled from the age of 3 to 56 I am getting tired of the struggle, but getting tired does not mean I will give up. But those of you who have a choice please appreciate what you have that so many of us would give anything to experience. Growing different is very painful no matter what the reason but if you are not disabled I think you should learn to appreciated the beauty of having a body that works and get over the things that made you different while you were growing up if you grow up to have an able body. I would give anything to have your able body and I don't think you would give anything to have my crippled one! People need to learn to get over the small things that kids tease you about, because once you grow up you should be able to leave those kids behind, and parents should spend a lot more time teaching kids not to be cruel. A lot of children's problems could be helped immensely if parents really addressed the issue of their children making fun of other children. Being different as a child should not be a life sentence!

I WANT TO TELL YOU A STORY

Actually I want to tell you several stories,
Ones that will entertain you,
I want to tell you stories of pain,
To tell you stories of survival.
Ones that would make you laugh,
I want to tell you stories of happiness.
To tell you stories of love,
Ones that would enjoy.
I want to tell you stories of successes,
To tell you at least one story that would make everything okay.
These are the stories that I want to tell you.

Alcohol Is The Most Dangerous Drug There Is!

I come from a dysfunctional family in which alcohol played a part in the dysfunctionality of it. But I have always felt that my family members that were, and are alcoholics, is that they used alcohol as a crutch to able to live with how screwed up they were as human beings. They weren't screwed up because they were alcoholics they were alcoholics because they couldn't live with how screwed  up they were as human beings. But something that i am having a hard time dealing with is a friend of mine that I have known for almost 40 years that is solely screwed up because he is an alcoholic and it seems like such a stupid thing to allow yourself to let it ruin your life, yet he just got out of the hospital for near liver and kidney failure because of drinking excessively for most of his adult life. He didn't drink like my mom and stepfather which they did because my step father molested his blood daughter and two stepdaughters as young teenagers and my mother who allowed him to do it until I went to her and demanded that she stop it, my friend just drank because he had inherited the disease of alcoholism. It seems amazing to me that you could throw your life away like that but obviously it is something that true genetic alcoholics don't have any control over. Having never been an addict I don't understand the disease, when I was a teen aged kid I tried cigarettes and all they made me do was cough and feel dizzy so I never smoked enough to form a habit, though my younger sister did. I have an inherited neuropathic disease that has made me disabled for my whole life so I have a  very hard time understanding people choosing to be disabled when I would do anything to have normal bodily functions so it is very hard to understand how someone who has a normal body can choose to let themselves be disabled by something they can choose not to do. But I guess that is the rub, they apparently cannot choose not to drink! From the experiences I have had through the years of growing up in the era of marijuana, cocaine, and other illegal drugs I have seen far more people disabled by alcohol than all of the illegal drugs combined. That seems like a sad state of affairs that the only legal drug is more dangerous than all of the illegal ones!

I LIKE MICE

I like mice
Mice are nice
I had mice
When I was young and nice.
I raised baby mice
Baby mice are nice
The pet shop bought my young and nice mice.
I went to visit my pet shop mice
I did not spy my nice baby mice
They told me a snake ate my nice baby mice.
I still liked the nice mice
So I quit raising baby mice
To feed the snake my young and nice mice.

This poem is a true story. I raised some baby mice when I was in 6th grade and after I sold the third litter of beautiful baby mice to the pet store they told me they sold them to people to feed their snakes. I quit raising mice as soon as I found that out. I was in grade school at the time.  I wrote the poem yesterday after I remembered the mice I had for pets and why I quit raising them.

My kitten sleeping in the empty fish bowl that was on top of the mouse cage to keep the cat from visiting the mice! I was 13, these mice were the ones that I kept for pets after I found out the pet shop was selling my babies for snake food!

I Am What I Am!

I am what I am and always will be

I am what I am no matter what

I am what I am and will always want to be more

I am what I am and that’s enough

For now

It’s enough that I want to survive

It’s enough that I love what I have

It’s enough that I know what I am doing is right

It’s enough that I know what I am.

For now

Now is not forever

Forever is not even now

Love of my life is forever

Forever loving life is fighting for now

Now is all I have known

Knowing has been all of my life

My life is knowing that now is forever

Forever is my life!

My Boyfriend Is A Dog, Or Something Like That!

My Pets Are My Family

What makes a human being more of a family member than and animal being?

Tonight I came home after visiting a friend who lives near me and when I got home I let my two wolf dog roommates in the house. I find their behavior so human like it still amazes me, even after having had the two wolf dogs I have right now for six years as well as knowing two others that my former roommate has in his house that I have known for nine years. The first wolf dog my former roommate and I had we got in 1990 and she died a year before we got the second two that my friend has. So my overall experience with wolf dogs spans about twenty three years. The bonded pair my friend has are very unique from the bonded pair I live with, they are all my very good friends but they are each very unique just as humans are from each other. When I got home I let Hunter and Niner in the house and Hunter proceeded to act like a teenager and jump around all over the place to get attention, the biggest problem with that is that he weighs about 130 pounds which is a heck of a lot of somebody wanting attention, he has a stuffed toy bone that he has had for at least three years that is a squeaky toy and when he is really pumped up he brings me this fragile stuffed toy so I can take it from him and make it squeak and then he takes it away from me and goes somewhere away from me so I can’t play with his toy. This is a win-win scenario from my point of view, I really didn’t want the toy but by acting like I do makes him want to take the toy and play with it somewhere else, win-win. The nine year old female I have that is his bonded mate has had two litters of pups before I brought her home with the 10 week old Hunter to live me. She has been a mother to two large litters of pups, she does not engage in the puppy like behavior that Hunter does with his toy, she left being a pup behind when she came to live with me and Hunter and didn’t have to be a mom anymore.

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Hunter And The Toilet Seat Cover

My animals are my children and I love them all. I am especially fond of my huge wolf dog Hunter with his beautiful dark brown eyes. I am continually amazed at how intelligent he is, he is so very intuitive about my feelings and knows just when I need a “dog” hug. I was on the phone the other day and I looked up from my conversation to see Hunter standing a few feet in front of me with the fuzzy toilet seat cover in his mouth. I was puzzled at first but unconcerned so I finished my telephone call and then I walked over and picked up the toilet seat cover, from where Hunter had dropped it on the floor, and took it back into the bathroom to put it back where it belonged. I then discovered that the 2nd indoor water bowl, the toilet, lid was down and he had been trying to tell me that by bringing me the cover off of it. Because I have Hunter and another large female wolf dog that both drink a lot of water, they use the toilet bowl as a second water bowl after they have emptied the large water container I have in the kitchen for them to drink out of. A friend had just been over to visit me not long before that who had put the toilet seat down, not knowing that it was used by my dogs as a water bowl, and when Hunter had gone in there to use his “water bowl” he found the toilet lid down so he wasn’t able to drink out of it so he got creative trying to figure out a way to tell me that. He presented me with the toilet seat cover to let me know there was a problem. I thought this was a rather intelligent thing to do. Since I don’t have “human” children I have to brag about my furry kids! 

Hunter's Eyes!

Just now my big male wolf dog came up to me where I was sitting on the couch and laid his head against my leg and looked into my eyes with his big dark brown eyes which said "I love you" so much I can't imagine that there is any human that could convey that message so beautifully as Hunter just did. I am not saying he loves me more than a human only that his eyes convey his emotions more than I believe any human can. Possibly it is because he is unencumbered by thinking about how pissed off he is because I left the cap off of the toothpaste! 

What Kind of God Would Allow These Things To Happen?

I apologize to those of you who believe that there is a “God” that looks over everything because if there is I would have to believe in original sin, and I don’t, because I was never given a chance at a normal (and I have a fairly liberal definition of normal) life. I was born with a 50 % chance of inheriting the genetic disease that I have, my mother “really” wanted to have children even though her husband was extremely handicapped by this disease.  She wanted to have children because she “had an unhappy childhood” and she wanted to give her children a better life. WTF? A. If you have a bad childhood what makes you think you are qualified to show someone else a good childhood? (Guess what, she wasn’t and she screwed both of her children up, the one with the handicap and the one without.) B. If you had a bad childhood why would you want to bring children into the world that you were unhappy with? (She never figured that one out even to the day she died at 80 of cancer that she didn’t want to live through because of the guilt she felt for failing both of her children, she told me I was too positive even though I was the one born with the handicap.) If there is a “God”, and I can’t say that there is one or isn’t one, but I just want to know why would he punish innocent children? Give me a good answer and maybe I will change my views but to this day I haven’t ever heard a rational explanation for the cruel and evil things that were done to me and my sister! My mother was so afraid of being alone that she allowed my stepfather to molest me and then my sister when we were young teenagers and only stopped it when I made her after I found out that after the year he had been molesting me, that she knew about and chose not to deal with, that he was molesting my sister and I “made” her stop it.  Her solution was to put locking doors on our bedrooms so we could lock ourselves in our bedrooms at night.  How screwed up was that for a solution?  The God that I envision would not allow this to happen, so how can I be expected to believe in God? No God in anyone's religion should allow this to happen ever!

PET COHABITATION

Relationships Are Very Much The Same Animal Or Human

I believe that my relationships with my animals have prepared me for the major human losses that I have faced, and will face, during the course of my life. YOU WILL OUT LIVE your pets, unless maybe you get a turtle or bird that lives to 100. I have lived with pets since I can remember the first cat we had when I was 3 - Blackie (he was a black cat—imagine that? I have wondered as an adult if I was the one that was allowed to name the cat such an imaginative name). I have lost many beloved cats and dogs during my life since I grew up with Blackie and Tuffie (the first dog my family had - a Pomeranian - he was tough in his own mind!) that I loved more than most people I know. Losing them is never easy but I have never let it stop me from adding a new friend when an old one died, usually from old age though I had a few get cancer and die too early but that is part of life. I can’t imagine ever living without furry friends to keep me company. Their love is precious and mostly unconditional, one of the major conditions of course would be a food bowl full of food! They can make you laugh even when you don't want to.

I have written on this subject many times before this because I find the similar complexities in the relationships between me and my human friends, me and my animal friends, and my animals with their animal friends to bear a great deal of similarities to each other in the way’s they work. I think it speaks to the nature of all relationships that senescent beings have with each other. It isn’t dependent on the intellectual level so much as it is dependent on the nature of the beings involved. I heard some “animal expert” say that they thought that a dog or a cat has the approximate intelligence of a 5 or 6 year old human. If you really think about this that is pretty damned intelligent! I have met many adult human beings that I am not sure I would credit with that much intelligence! I have four animals living with me that have an incredibly intricate and complex relationship with each other and with me. The dynamic relationship in my house is formed by me, my two 13 year old cats – one is a male and one is a female – and two 80 % wolf and 20 % malamute dogs of which one is a female that is now almost 9 and a male that is now almost 6. The cats were established members of the household when the two wolf dogs came to live with me, the 9 year old female was 3 years old when I brought her to my house and had been raised around cats and is a very sweet animal though I would venture to say that if you threatened my life she would probably call on her ancestral calling and kill anyone that would do me any harm and the 6 year old male is very large and has already threatened a couple of people he got bad “vibes” off of but didn’t act on his feelings because the “strange” (and he was right in calling the fact that they were strange I found out eventually) people didn’t do me any harm. I watch the interactions these four animals have with each other, and with me, in “our” house and I amazed at how intricate and intelligent they are in the way they deal with each other. Just tonight the female wolf dog came up to me for attention and the always jealous male came up and asserted his “largeness” upon the situation so that she eventually said “fine, you win” and walked away. He weighs 130 pounds and she only weighs 60 pounds so she always defers to him when he gets jealous and wants the attention on him. They are a bonded couple, the male always gets to be right in the world of the wolf, it is not the way humans believe it should be but it is the way of the wolf and they don’t fight about it because that is the way they survive. The 2 cats come in as an interesting ingredient in the nature of things, they were here first and the female wolf dog came from a house that she shared with cats and she is a very gentle creature (though totally capable of being a wolf if she needs to be but in my house she doesn’t need to be one) and the male was only 10 weeks old when I brought him and the 3 year old female to live with me so I taught him that he had to be “nice to the kitties”. Fortunately the 2 cats had already lived with 2 other wolf dogs, another male and female I adopted several years before that I let my roommate keep when I moved to my own place, so they were experienced in how to deal with large canines and how to not put themselves in harm’s way when trying to keep the much larger creatures in line (so to speak). There are times when the cats are both laying on the couch by me and the male wolf dog comes over and starts asking for attention and he rubs he very large head (it is as big as either one of the cats whole bodies) against my leg and gets closer and closer to the cats until they finally leave and he gets on the couch and lays his head on my lap. He is very pleased with himself for getting the cats to leave and getting to take the position they had before he intimidated them out of my lap that they held before he threatened to “sit” on them and “yes” he will try to sit on them if they don’t leave when he puts on his jealous performance. Most of the time he will just look at the cats sitting on my lap from wherever he is sitting, or laying, in the room and not do anything but now and then he just can’t help himself and has to act on his jealousy. I find the intricate peace that these four creatures have come to in the way they deal with each other fascinating.

My first wolf dog Mocha would take her bones to a corner in the living room and set them down and push invisible dirt over the bone in the corner of the room. She would then walk away and go back and check to see if the bone was still covered, at least that is all you could assume she was doing, and if it wasn't to her satisfaction she would walk over and out more invisible dirt on it. I had one friend come over just after she had done this and he went over to where the bone was and she watched him very carefully and seemed relieved when he left the bone alone. A little while later my friend went back over to the bone and picked it up and Mocha gave him a look that seemed to say “how did you find that, I had it buried so well I thought?" Obviously I can't prove what she was thinking but her actions kind of made this seem like the only scenario. I think there is a lot more going on in our animal friends minds than we realize.

This is a photo of my nine year old wolf dog that had been lying on the floor while this kitten was playing with her tail, the expression on the kitten's face is priceless as the wolf rug came alive in front of his yes. The comments I posted after the photo are my interpretation of the possible thoughts that might have been going through the mind of the wolf and the kitten. This female wolf wouldn't hurt a flea but I was pretty impressed by the braveness of the tiny kitten when he was faced with a "live" very large creature staring at him as if to say to him, what the heck are you doing to my tail little boy?

I thought you were a rug until you sat up and looked at me!

My what big eyes you have!

The better to see you with you silly little kitten.

Moving Past The Evil

I do not think that you should get an automatic “get out of jail card free” because of your having been abused as a child so that you get to abuse others like you may have been taught, but I do believe that this should be given some consideration as long as the person attempts to break this cycle. My shining example of how this cycle can and has been broken is my oldest nephew, his father didn’t physically abuse him but he was an alcoholic absentee father, which is abuse in anyone’s book. My nephew was raised by a loving mother who has had her own issues, the same issues I have had as her sister, as we were raised by a mother who allowed our stepfather to sexually molest us as young teenagers. My sister wanted to be a better mother than our mother but failed that goal in some ways because of her intense desire to be her children’s best friend and didn’t want to be the “evil mother” (as she felt the one we had was, and she was, for allowing us to be abused) so she didn’t always come through when she needed to be a mother because she didn’t want to be the “bad guy”, but given the dysfunctional training we both received she did the best she could do and her abuse was a lack of ability to be a tough enough mother at times when the children needed one and she would fall apart emotionally when things got tough. But it was certainly a great improvement upon what our mother did for us but it did cause her children to be afraid to bring up emotional subjects with her because she would “fall apart”. This is where I played an important role of as the understanding aunt who could fill in the blanks where my sister wasn’t able to. They knew they could talk to me about the things my sister had emotional trouble handling so between the two of us we raised three beautiful boys and the eldest one probably had it the roughest because we were all learning how to be Parents, Aunts and Sons but we did succeed and we raised three wonderful young men that I am very proud of. When the oldest nephew of mine’s girlfriend got pregnant on purpose (but it was a purpose he didn't know she had in mind) my nephew initially flipped out (very understandable considering he was only 20 years old and didn’t have a very high paying job – but he did have a job and he has always been a good worker), he felt he was barely able to support and take care of himself and his girlfriend much less care for a child. But he stepped up to the plate when he was told by his girlfriend, now wife, that she was pregnant. He told me that he didn’t ever want to be a “crappy father” like his father had been an absentee alcoholic who was never there for him. A lot of people say that they want to be a better parent that they had but few actually make it happen, but he did, and I give equal amounts of credit to my sister, me and my nephew. He now has two wonderful children and he has been there for them for their whole lives (they are now 13 and 10) and they are smart, well behaved (more than even “normally” well behaved) which means they behave like well-adjusted children, actually they behave like above average normal children which given all the hurdles my sister, me and my nephew overcame is phenomenally good and says a lot for what the three of us have dealt with and have been able to overcome against a lot of odds. So no matter how much the “sins of the parents” are often visited upon the children the fact that my oldest nephew, he is now 35 (the younger two aren’t married yet and don’t have any children but they are only 32 and 23), and is a wonderful father who is raising 2 fabulous children. He does prove the circle of dysfunction can be broken with a lot of hard work and love practiced by the children born into circumstances that they can only control by their actions because you can’t undo what has been done to you. The strength of the human spirit to do the right thing is alive and well with a lot of hard work done on my part, my sister’s part and my nephew’s part can be a wonderful shiny thing. I love them all dearly, and by all I am including the two nephews who don’t have any children at this time but are lovely human beings who love their mother, aunt and brothers and the significant others in their lives which includes the animal members they always include on their Christmas cards, kind of like what their "aunt" has always done on her Christmas Cards. You can’t pick your family but you can help build it into a beautiful thing with a lot of hard work and by not allowing the past to bring it down. I love them all dearly. And we work at becoming functional on a daily basis.

Diary of My Dysfunctional Family

So Many Weird Things Happened!

 I never blamed alcohol for the problems and I don’t believe that alcohol was the problem but I do believe it was what my parents used so they could get drunk and not deal with the horrible crimes that they had committed to the innocent children in their lives as well as to themselves and each other. Alcohol was always present in my life, I never thought of it as a problem until I got older, because my stepfather always worked and was never unable to function because of alcohol and my mother only drank in the evenings with my stepfather and with the exception of a couple of memories I have of their being drunk when I was living at home their drinking never seemed to be a big factor.

 I remember one evening when I think my sister and I were around 11 and 13, and we were left alone for the evening (we lived on an acre lot and my mother’s father lived in a trailer house on the acre so we were not that alone, there was a special phone hooked up that ran from our house to Grandpa’s trailer) which we thought was really cool and we would be left with a treat (because we never got them otherwise) of getting to make our own TV dinners and we were also allowed to have a small glass of wine with tit which we really felt like we were “big” girls for getting to cook our own TV dinner and eat it with a glass of wine like we were at our own private restaurant. My stepfather drove a backhoe for a living and worked at the “Elk’s” club as a bartender on Friday nights and frequently mother and he went to the Elks club on Saturday night to socialize with a married couple that went there also. My mother thought the Elk’s club’s ritual of standing up at the hour of 11:00 PM to honor the “fallen elk” (or dead people as most of us would say) and I remember hearing her and my stepfather arguing because my mother would giggle when they rang the gong and asked the member to bow their heads because it embarrassed my stepfather when mother would laugh. I do remember one time some friends of my parents son’s wedding reception was held at that “Elk’s club” and I got to experience the “Hour of Recollection” that caused my mother to laugh and me as well once I got to witness this silly serious ceremony, it wasn’t that they were honoring the dead that was silly it the way they said it, referring to their members as elk and the dead people as fallen elk on top of the fact that the head people had titles that sounded like they belonged to the Klu Klux Clan, like the “exalted ruler” and it did sound pretty silly when they talked about the kingdom of “elkdom” and bowing your heads for the “fallen elk”. This is a direct quote from Wikipedia about this phenomena of “The Hour of Recollection”. Deceased and otherwise absent lodge members are recalled each evening at 11 p.m. Chimes or sometimes a bell will be rung 11 times and the Lodge Esquire intones, "It is the Hour of Recollection." The Exalted Ruler or a member designated by him gives the 11 o'clock toast, of which this version is the most common: You have heard the tolling of eleven strokes. This is to remind you that with Elks, the hour of eleven has a tender significance. Wherever Elks may roam, whatever their lot in life may be, when this hour falls upon the dial of night, the great heart of Elkdom swells and throbs. It is the golden hour of recollection, the homecoming of those who wander, the mystic roll call of those who will come no more. Living or dead, an Elk is never forgotten, never forsaken. Morning and noon may pass them by, the light of day sink heedlessly into the west. But ere the shadows of midnight shall fall, the chimes of memory will be pealing forth the friendly message: To our absent members. That is the end of the Wikipedia quote. I’m not trying offend anyone but how could you not laugh after someone says this with a straight face? One evening after my parents had been at the elks club they came home in the early hours of the morning, my sister and I were sleeping in the trundle bed in her room that night and there was a full length mirror on the inside of the bathroom door that when it was left open you could see inside of the bathroom from my sister’s bedroom and we could see everything my parents were doing in the bathroom. My father basically carried my mother into the bathroom and put her in the shower and she could barely stand up. We didn’t realize at that time it was because she had gotten drunk and had gotten sick on herself and our stepfather was trying to wash her off. At the time in the middle of the night my sister and I just giggled to ourselves and watched the show. The next day when we brought it up we were told that our mother had gotten really drunk and sick which we didn’t totally understand for several years.  The next memorable drunken experience that we saw our parents' exhibit was when I was 15 and my sister was 12 and we had recently moved to the country and my parents had just come home after spending the evening at a local tavern. We were sleeping in our own beds but since our parents were gone when we went to sleep we had fallen asleep with our bedroom doors slightly cracked open so we could hear them when they came home. Boy could we. I remember them driving into the garage and coming into the house and then we could hear them in their bedroom, which was on the other side of the hall from my sister and I’s bedroom. We both compared what we had heard the next day and we both heard the same thing. We heard them enter their bedroom and not too long after that we heard a loud thump and then “what the hell are you doing, I thought you were helping me take my pants off?” and the answer from our mother was “that was what I was trying to do, you weren’t supposed to come off of the bed with your pants!” We both independently laughed and the next morning told our mother and stepfather what we had heard. They were a little embarrassed but we were old enough it was no big deal.

This incident happened not long after the previous one. One evening when I was 16 and my sister was 13, we were living a few miles out of the small town my family had been moved to a year before that, my stepfather’s real daughter and her husband were at the house visiting and after dinner they sat around in the living room drinking wine and talking. My sister and I were bored and asked if we could borrow the car and drive down to the local hangout in town until it got dark. It was summertime and it didn’t get dark until around 10:00 and it was only 7:00 when we asked to leave. They said yes so I drove us the four miles to the town and we hung out with the teenager that lived on the main street of the town that had just graduated from high school and had rented a trailer house to live and party in. We stayed and flirted with the guys until a bit longer than dark, it was probably about half an hour. When we got home the lights were out inside the house and everyone was in bed.  We were thinking we were lucky because then no one could get mad at us for being a little late. The only problem was is that we couldn’t see where we were going. We managed to go upstairs to where our bedrooms were, Brenda and Dennis were sleeping in the family room downstairs on the fold out couch. We first went in to the bathroom to brush our teeth and go to the bathroom before we went to bed. We were giggling because even though we were trying to be so quiet it seemed like we were making a lot of noise because it was so quiet in the house. Pretty soon mom yelled out for us to be quiet and we didn’t say anything but we did giggle a little more. Then in a few more minutes we heard “I told you guys to be quiet” and we turned to look and mom was standing at the bathroom door and her hair was all messed up from her being in bed. We looked at her at started laughing at her messy hair, she told us to go to bed. We told her we would. We finished brushing our teeth and looked over to see our stepfather standing at the door and he said “Your mother told you to be quiet and go to bed.” For some reason my sister, who was on standing by the bathroom door said “We will, good night” and then she shut the door. We heard a thump against the door and then another one and my sister quickly jumped away from the door and hid behind me. The third thump brought the door wide opened having been punched off of its hinges by our stepfather. We just stood there terrified and he just looked at us and said “you better do what your mother asked you to do” and then he turned and went back to bed. We got really quiet and went to bed immediately. The next morning when we got up they were at the kitchen table drinking coffee with Brenda and Dennis. Nobody said anything for a while. A little later when my sister and I got a chance to talk to Brenda and Dennis alone they asked us what happened. We told them. Later on in the day Brenda told us that her dad had told her that when he got mad at us for not doing what mom had said and knocked the door off the hinges that we had such terrified looks on our faces it was all he could do to keep from laughing. He was also mad at himself for doing it because he was going to have to out the door back on the hinges. She also said that she asked Dennis if she should go up and see if everything was alright and he said "hell no stay down here."  In a few years we would laugh about the event but not that day!

As the years went on saw so many odd incidences that they made me realize that they were always dependent on alcohol to live with themselves for the various reasons I have already disclosed in other stories. I used to always think that one of the reasons I was a responsible drinker of alcohol was because I was allowed to try it when I was fairly young so it held no mystery for me and I saw my parents try to escape their lives and their responsibility for having screwed up their children’s lives by drinking alcohol every evening. Because they weren’t such alcoholics that they couldn’t function I didn’t put the dots together until twenty years later that they were alcoholics in order to avoid dealing with how screwed up they were. The only favor I guess they did me was making me not want to get drunk and be like them. I would rather face life head on and be able to say I did the right thing!

There are so many strange incidents that have happened in my family that I will never be able to remember or record them all and that is probably a good thing. My stepfather is a very odd person and most of the strange stories in my family life revolve around him and most of them, but not all of them, happened when he was drinking. I in no way blame alcohol for the weirdness as I believe that my parents became alcoholics because as I have already said they drank to escape from all of the weird and awful things they inflicted on their children and to help them cope with their guilt. I think that the things that happened while they were drinking were because of their being uninhibited by what should have been the natural desire to hide how weird and inappropriate their behavior was when they reacted to tiny little things that my stepfather would lose it over. Things like someone not “thanking” him for bringing them a glass of something to drink at a party and an hour and a half later we would find out he had been sitting around being pissed off for that hour and a half and would blow up and have a cow about some tiny little thing because he had been stewing about the imagined slight for an hour and a half. So bizarre! My mother and my stepfather used to baby sit, I am absolutely sure it was her idea and not his, my nephews when they were young and they just loved to play with the hassock my parents had to place your feet on when sitting in my mother’s favorite chair. They beat it up pretty good over the few years they were young boys and because my stepfather always has to blame someone for something when it finally fell apart after 10 years he deemed it the fault of my sister’s kids. It really shouldn’t have mattered as it was probably a $30 piece of furniture to begin with but my stepfather had to find blame for everything even if it was free. So one Christmas after the hassock was so screwed up it could no longer be used my stepfather wrapped it up and let my sister open it as a Christmas present. I assume the reason was to let her know he blamed her for her children ruining it. How much more screwed up of a person could he be, after already molesting my sister and I as young teenagers and we forgave him and then he does this? Am I missing something? I don’t think so. I think my sister and I are lucky to even have something close to a normal life after growing with this freak for a stepfather and the freak for a mother we had that let him do the screwed things he did. I am left to wonder how we even got out alive sometimes! There are so many stupid incidents at all of our family occasions, Christmas, birthday parties and even times we all met for dinner at a restaurant.

I have been going through family photos and have found I have a lot of good memories as well as a lot of bad ones upon going through them. The good far outweighs the bad but I am amazed at how many strange events have gone on in my family. I hope this is not normal. When I started to buy a house together with my best friend in 1990 we started having Christmas at my house because after our Christmas experience in 1989 led to my stepfather calling me up on the phone a day after Christmas and telling me that my dog chewed some branches off of one the Rhododendron bushes they had and he was really pissed off about it. I first told him I couldn’t imagine why my dog would have done this as she was not a stick dog or particularly destructive, they live on 63 acres that she was free to roam on so why would she chew up a bush in their front yard? But I politely apologized anyway and said if she did it I was sorry.  My private thoughts were “It was only a bush and there were only a couple of branches ruined”, but I didn’t say that. Later on in the evening my stepfather called me back and told me he found out that my two nephews had destroyed the two branches on the stupid plant and he was sorry that he accused my dog. I told him that I never thought my dog did it but I also thought it was ridiculous that he was so upset by such a trivial thing. That was the reason I wanted Christmas to be held at my house because stupid incidents like this have no place in loving your family on Christmas.

SURVIVING SEVEN-ELEVEN

When I was 22 I moved in with a boyfriend who worked full time and I was putting myself through college so I was attending college part time and I worked part time to help pay the bills. Just to give you an idea of how long ago that was and how much things have changed my part time job at a 7-11 paid me $2.15 an hour and rent for our two bedroom duplex was $200.00. It was a handy job to have while going to college because of it being open 24 hours a day and 7 days a week I was able to change my shifts around when my college schedule changed though I only would work the day and swing shifts for safety reasons since there were many times it wasn’t busy enough to have more than one person working, though there was fortunately a take and bake pizza business in the other half of the building that was open every day until 11 at night. Over the 4 years I worked there I had many odd encounters with customers and I learned some valuable life lessons along the way as well. I had several regular customers that as soon as I saw their car pull up outside the store I would get ready for them to come in and try to start some kind of disagreeable exchange because they were always negative and would complain or do something that was highly irritating, like want a fresh pot of coffee made no matter when I told that the one that was already ready had been made. One valuable life lesson I did learn from these unpleasant customers was that if they succeeded in putting me in a bad mood they had won what they came in there to do, because I eventually realized that they most likely never gave me a second thought after they left the store and if they had succeeded in making me unhappy I was probably in that state longer than it took them to start their engine and leave. I learned to smile and totally ignore their assholiness (it should be a word) and not to let them win. Back in those days there was no rule limiting how many bottles a customer could return at one time, which was especially crappy for a small store with only one clerk on duty. Even though I would try to reason with the jerks that would bring their whole garage full of bottles back at once by countering their statement that they had bought them all there with my statement that they hadn’t bought them all at one time most of the people who were jerks enough to not realize it was a rude thing to do didn’t care when that was pointed out to them. Occasionally I would throw a 6 pack of bottles against the concrete wall when taking the bottles back to stack them and it gave me a little frustration relief to break the bottles but unfortunately it gave way to making more work for myself because I had to sweep up the broken glass. I eventually came up with a solution that gave me the pleasure of venting my frustration by breaking a few of the bottles but avoiding the extra work I had created for myself by leaving a few of them in a paper bag so that I got to hear the sound of breaking glass when I threw them against the wall but I only had to pick up the paper bag with the broken bottles in it and throw it in the trash. There were also some interesting experiences, some of which I am glad I had, some I wish I never had and most of the rest fall somewhere in between those two extremes. I met some really cool people, some rich and famous and some real ******** – in other words a fairly average representation of the general population. Two of the people I remember the most were both older men, they were both around 80, and one was a truly sweet and wonderful man who was lonely and came in to visit me because he wanted a friend and I am blessed to have been smart enough at the young age I was to recognize this man’s value as a human being and having known him enriched my life and to this day I still have a gift he gave me, a turtle footstool. He made wooden footstools which the wood was formed into the shape of a turtle and the shell of the turtle's back was the padded foot rest. I have had many a kitten that has loved to beat up the turtle stool’s back and it still is in very good condition in its forever home in my living room. He was known to us all as the “turtle man” because of those footstools he made and eventually gave one of to all of us who worked at the store who had become friends with him. He used fabric that he was given by a local shop that reupholstered couches for the turtle backs and he would have us pick out which fabric we wanted for the stools he insisted on giving us for allowing him to “hang out” and visit and drink coffee. He also sold them, not very many that I know of, so over the years I knew him when I worked there every member of my family was given a turtle footstool I bought for $15.00 to help him out and make him feel valuable more importantly. Many years after I quit working there, and moved on to the “real” world of working after being done with college, I remember reading about his death in the newspaper and I still remember his name which was Roy Graber, a very sweet old man who I will never forget having the privilege to have known him. The other interesting old man I met working there was “infamous” in his younger years but they had long since past when I met him and he was just a little sweet old man to me, but what he was infamous for was being involved in the last train robbery in the state of Oregon that I live in and he had spent almost his whole life in jail for a botched train robbery when he was only 23 years old. The only reason I even know this about the man was that he would write checks when he came in to buy a few groceries and a cup of coffee so I knew his name and one day the local postman, who also liked to hang out and visit with me and the owner of the store, told me a little bit about the man. It also happened that one of my favorite places to go every year with my sister and my mother was to a world famous music festival in the town of Jacksonville, OR (where gold was discovered in Oregon in the 1850's) which is a town on the national historic register because the town and its buildings are preserved as they have been since the town’s inception, and in the museum I visited several times they once had a display about the “last great train robbery” in the state of Oregon back in 1923 and one of the perpetrators of that robbery was the very polite and gentle old man who was one of my regular customers, Roy DeAutremont. He had been released from prison in 1971 and I met him in 1980 when he was 80 years old, he died 2 years after I quit working at 7-11 at the age of 84. He had been 23 years old when he took part in Oregon's most famous train robbery which also turned out to be one of the most badly botched attempted robberies in our nation's history. Roy was a very gentle soul and was one of the politest people I have ever met and, not surprisingly he never talked about the “great train robbery” he had spent most of his life in jail for. I met many other people while working there, some of them worth knowing and most of which I have long since forgotten. There were also a few incidents that occurred while I worked there which I will never forget. One of the most unforgettable was the time a man walked up to the counter and placed some groceries on it and I started ringing them up on the cash register and as I was doing so I realized he had quietly let his coat open up and he was naked underneath the coat. I didn’t make any acknowledgement that I had noticed his not having any clothes on and continued ringing up the items on the cash register and when I was finished I said the total out loud and looked him in the eyes and still didn’t allow him any knowledge that I knew he had no clothes on and he placed his money on the counter and I grabbed it and put it in the till and as I was getting the amount of change ready to give back him someone had walked in the store and the flasher closed his coat so that the person couldn’t see he had no clothes on under his coat. So I was able to give him back the change without having to acknowledge his lack of clothes. He grabbed his bag of groceries and left the store as the man who had just come in walked up to the counter. I then told the man what had just happened and when he looked out to see where the “naked” man was he was long gone. I told the guy that I had just pretended not to notice the man didn’t have any clothes on and I started to laugh as I figured I probably spoiled his fun by not freaking out when he stood at the counter and let his coat open up. A couple of nights later he did the same thing to a co-worker of mine and she screamed and gave him the reaction he probably was looking for from me. Apparently he ran out of the store and we never saw him there again. There were a few shoplifting incidents over the years and one time a bum drank a couple of bottles of “Night Train” (I think that was what it was called) back by the coolers where I couldn’t really tell what he was doing, and as he stood in line waiting to purchase one item he may have had the money for, he got so drunk he fell on the floor and I called 911 because I thought it was a medical emergency until the ambulance got there and a customer had found the 2 empty bottles of wine he had chugged. He ended up being transported to jail for shoplifting and to sober up instead of taking an ambulance to the hospital. Those were the major events I remember from my “time” as a checker at the local 7-11.

My Sister And I Laugh So Hard Sometimes We Can’t Talk!

My sister and I have very similar senses of humor and through the years there have been many times when we have laughed so hard we could hardly talk. We can just look at each other and start laughing, so hard sometimes that we can't do anything but laugh hysterically and have people look at us like we are crazy. There have been many times that we have embarrassed the people with us because of our inability to stop laughing. Most of the things we find funny are also funny to the people with us, unless they happen to be the unfortunate funny event we are laughing at, but no one else seems to be as connected by the humor of the situations as much as my sister and I are. I find this to be a special connection that she and I share. It makes me feel good to laugh so hard I can't stop. I have actually seen people that did something slightly funny become totally unable to function after the initial "funny" thing they did, like the time my mother farted during an outdoor symphony concert and my sister and I started laughing so hard every one around us started laughing as well and I don't think they even heard the fart - they just started laughing because we were laughing. My mother never saw the humor in this event and never forgave us! :)

The Ocean

The ocean is the most mystical part of nature for me.

It contains more secrets in its depths,

more knowledge in its soul,

than a mere mortal man can ever hope to experience in ten lifetimes.

It is to me the very essence of eternity,

for how can it ever die?

The tides ebb and flow in a perpetual cycle,

peacefully coming in and gradually going back out.

There is nothing so serene,

nothing so restive,

nothing so unruly,

as the sea,

 when its waves roar and bellow,

when the breakers incessantly beat themselves against the beach.

The ocean,

where life began,

where all life may cease to exist,

not dying but returning to everlasting freedom.

The Ocean

A Fish Swimming In The Trees

Fish are supposed to swim in the lake
Deer are supposed to walk among the trees
So why do I feel like a fish out of water
That is swimming in the trees?

My Two Old Cats Are Getting Weird, Or Maybe Just Weirder!

For all of my life I have been told that my cats seem to have a lot more personality than other people's. I have always thought it was due to a combination of things, one that if I get to choose the cat (as opposed to fate choosing it and one shows up dumped on my doorstep so to speak) I always choose the most intelligent kitten in the litter and I spend a whole lot of time with them in their formative early life and it has been scientifically proven to make people smarter the more attention they get when they are young so why wouldn't the same thing make sense in animals? I also know I have a bit of a reputation as an animal whisperer because I have been at people's houses having a great time with one of their cat's or dog's and the owner's walk into the room and tell me that animal doesn't like anyone and they are amazed that I have bonded with it. I was once given a 2 year old snow Bengal that the breeder had given to a friend of mine because she wanted to breed it (she had spent a year trying to produce a cat of this quality to breed to a stud she had and for 2 years it was schizoid and would have nothing to do with a male cat) and was hoping he would have better luck than her. After 6 months, during that time he was never able to pet her much less breed her, the most socialization he achieved was that if he held his hand out she would pet herself on it but he wasn't allowed to pet her. My friend knew my reputation with animals so he offered her to me in the hope I could at least make a pet out of her. The first night I had her she was running around the house chirping as if she was happy and the next day when I fed her some canned cat food she let me pet her. She seemed to like it and then the next day she came up to be fed, she was a real beggar for treats, and she let me pet her without food and that was the beginning of a very sweet and loving friendship I had with this cat and she would also let my friends pet her. Never was it ok to pick her up but she would sit next to me on the couch and let me pet her. A year later she did allow a male Bengal to breed with her, I found out that it had to be on her turf and her terms, no going into his enclosure but he had to be allowed to go in to her bedroom. I guess you might be able to conclude there might be a control issue going on, she wanted to be in control. She had only one premature kitten out of that breeding and she came and asked me to help her with the tiny little baby that looked like a white rat more than a kitten and she allowed me to take her two hour old baby and feed it formula and give it back to her to keep it warm and she let me do this for the two days it took until her milk came in - so together we saved her baby's life. Needless to say I kept the baby and I still have her years later and she is so much like her mom it is uncanny. But back to my original story. I also have two cats that are now 13 years old that I adopted from a local shelter when the male was 8 weeks old and about 6 months later I adopted a buddy for him from the same shelter, she was 5 months old. They became instant buddies and still are best friends to this day. All of my animals do have lots of personality for whatever reasons but these two older cats have pretty much have always had the same weird personality traits that they had as kittens. For some reason they have started walking on me as if I were a part of the furniture, instead of walking up and jumping on the couch next to me they will get on the back of the couch and walk right down from my shoulders using my stomach to walk on for balance to get to my lap. Why? It looks harder for them and it sure doesn't feel that good to have their little paws dig into my chest and stomach as they "come on down" but the difficulty of this way of getting to my lap almost seems like it is the goal instead of being an obstacle. I wonder if they are just getting to be eccentric jerks or if they are just trying to bother me because I am sure that they know that they are. I guess old animals can get weird just like old people, senescent beings may have a lot more in common with each other than they realize!

The old cats - Mojo & Jasmine

Moonshine & her Moonbeam Kitten!

Horses Saved My Life As A Child!

Because of the disease I was born with that made me unable to run or climb things that needed hand strength which made me very miserable as a child because I was so terrible at PE class. It doesn't seem like that big of a deal as an adult but as a child being different, in any way, is a curse as kids aren't honest they are mean. I am not saying that they are necessarily mean on purpose but by saying whatever they think without the filters we learn to use when we are older that from the "mouths of babes" come very hurtful statements. I was lucky to have discovered riding horses at the very young age of six and when I was riding on a horse it gave me the sense of the power and strength that running and having normal muscle strength provides to those who are not handicapped. It gave me an entry into the "normal" world by allowing me to experience being as strong and fast as the next person when I was on my horse and allowed me to temporarily escape from being handicapped. As a child that was so important to my feelings of self-worth and I thank the beautiful and mighty horse for allowing me to experience the thrill of going fast and walking on rocky trails that I would never have been able to experience on my own legs. I think that horses can be very therapeutic to anyone who can't experience walking on their own legs in the woods, or to climb a mountain, or anything that requires the ability to walk to truly experience the joy of doing things that require legs that work. If you have a handicapped child, or even a handicapped adult for that matter, in your life that hasn't ever experienced the joy and power that riding a horse can give you please make the effort to let your loved ones have this experience. I have enjoyed the freedom that horses gave me from the age of six on into my adult life and have had many a wonderful trail ride that allowed me to experience the beauty of nature up close and personal from the back of a horse. Freedom is the wind in my hair on the back of a strong and beautiful horse.

Me & Mary Lou on our horses

Me & Mary Lou on our horses

Charcot Marie Tooth - Part of my Story

The most evil thing about Charcot Marie Tooth is that you can want to do everything in the world to get better and then you find that there is nothing you can do to get better. It seems like a worse diagnosis than if you were told you have cancer and there is only a 50 % chance of survival, at least in that case you can do everything right and you have a chance at regaining your health and strength. With CMT the reality that really does seem totally incomprehensible is that you cannot really get better, you cannot build up your muscles, the best you can hope for is not to lose more than you already have lost. No matter how willing you are to exercise for however many hours there are in a day, there is no way to build any more muscles, period. It really does seem like a death sentence of sorts because you can do almost nothing and be weak and you can exercise for hours a day and be equally weak or even worse. There is really no other disease that this scenario happens with, almost everything gets better if you work at it. That is the amazingly depressing scenario of Charcot Marie Tooth disease. I was three years old I have been told by my mother that it was when she noticed I wasn’t able to walk very well, even for a baby, the disease had onset and what it muscles were claimed first were those of my feet and ankles and I couldn’t walk the same way other children of my age were able to do. Then there were losses of different muscles, my hands and wrists became weak and I could not grasp things very well. Then when I was six, just after I had started grade school, the orthopedic surgeon my mother had taken me for what seemed like a million times suggested that they perform a surgery on each of my ankles to set the main bone in my ankle at an angle that would make it harder for them to twist them due to my weak muscles. I don’t really remember what it was like before those surgeries but I do remember the terror I experienced when my mother took me to the hospital and I woke up after the operation with a cast on my foot. She never told me what was going to be done to me and it freaked me out and created a lifelong fear of doctors and hospitals that possibly could have been avoided had she told me that I was going to have a surgery on my ankles so I could walk better, she never told me anything which created my being totally freaked out when I came out of the anesthesia and was in pain with a cast on my ankle.  I already felt like a freak because I couldn’t do the things other kids could do but this took feeling like a freak to a whole new level. Even at the age of 56 I still remember how scared I was when I woke up in that hospital bed, with three other kids in the same room with different kinds of problems. The only kid I remember was the one who had his tonsils removed because he got to eat ice cream all of the time, doesn’t that sound like a reason a kid would remember something?  I remember not wanting to go to school with my cast on as I have already stated that I had felt like a freak before the cast and certainly didn’t want to be any more different than I already was. Here is an excerpt from a paper my mother wrote for a class she took when I was going to college from a teacher I had taken psychology and philosophy classes from that I told her she would like. I only got to read this paper she wrote after she died of cancer four years ago when my stepfather gave me her class papers. It wouldn’t have changed my experience with the hospital I had as a child but might have helped me deal with how screwed she was later on in my life.  Here is part of what she wrote:

When Michele was six she had to have operations on her feet. I obviously did not prepare her for these operations as well as I should have. She is 27 now and the other day she said “when I overheard you talking to someone about that first operation, I became so frightened I nearly died!” I think that I should have taken her to visit the hospital before the operation, but even more importantly, I should have talked to her about her feelings, even though she didn’t ask any questions I could have said, “I know you are very frightened about this operation and I know it will be unpleasant and you will have some pain, but you will be able to walk better and I will be there with you to help you.”
When she returned to first grade on crutches, as we approached the classroom she didn’t want to go in. Her teacher suggested that I leave her and gently restrained her from going with me. I did leave her because I felt she could handle it, thought was difficult for me. 

Well of course I didn’t ask any questions, I didn’t know what was going to happen so what questions could I have asked? When I was diagnosed with CMT 53 years ago they didn’t know very much about the disease and CMT was classified as a form of Muscular Dystrophy, the only form that didn’t continue progressing in its destruction of the muscles until you died from it at a very young age as is the case with MD. They now know that the atrophy of the muscles in CMT is not as direct as it is in MD proper, in CMT the nerves that control the muscles are destroyed which in turn cause the muscle loss. When I was directly asked what was wrong with me when I was young and very little was known about this disease, which didn’t happen very often, I could only answer that I had a rare form of MD that only affected my feet and hands and didn’t progress after its initial damage and this is what I believed about my disease until I was in my forties because even after the internet came out I refused to research my disease because after I had the second two surgeries on my ankles at 16 my orthopedic surgeon told me to go out and live a good life and I shouldn’t ever need to see him again. Well I always felt like this was a little too optimistic but I also feel in some cases ignorance is bliss, so to speak. I had noticed that no matter how hard I exercised I could never climb stairs any better than I could before I worked hard at building up those muscles, my thighs, stomach and upper arms would get more toned up but my grip never got any better and my ability to go up and down the stairs always required that I had to hold on to a rail or a friend’s hand to not fall no matter how many times I went up and down the stairs, in fact if I went up too many or too steep of stairs I would run out of strength in my legs and have to sit where I was as my legs would just give out. They would recover after giving them a rest of sometime ten minutes and sometimes it would take an hour but I have since found out that irreparable damage can be done by pushing my body like that and I am very thankful that I didn’t have that happen because I had no idea that could happen. Probably if I had looked CMT up on the internet I might have found this out but I was hopeful and optimistic about my CMT up until the first time it really got worse since I was a child at the age of 51. I feel that what my mother once said about me that I was “too optimistic”, this served me well in my not getting too depressed about not being able to improve my physical abilities and had I known that losing more of the use of my hands would most likely occur as well as my legs getting weaker I might not have traveled to Mexico or have gone to Spain, so since not knowing the truth didn’t hurt me I am glad that I didn’t spend a life in fear of losing the use of my legs or hands until it actually became a reality. I saw a video on You Tube recently where a young woman was determined to do a physical skiing activity so badly that she totally exhausted her muscles to the point that she never recovered, I have done things close to that but quit short of the point she did as I recognized I was getting weaker at what I was trying to do so I saw no point in continuing to do the activity that I was not able to do. If I had continued on I quite possibly could have done the same thing to my legs that she did to hers but since I wisely chose to give up when I found I wasn’t getting ahead I didn’t do any permanent damage but it could have turned out different and I do understand the young gal’s determination to try and do something that seemed like it should be close to attainable. The desire to improve one’s self is a very powerful and necessary element in a human being’s life and the removal of that ability is one of the most depressing aspects of the disease of Charcot Marie Tooth. There really isn’t anything we can do to get better and it is rather depressing, granted I am better off than a person in a wheelchair but the knowledge that the best you can do is maintain whatever strength you have and never ever get any stronger is a powerfully depressing notion as hope is one of the biggest motivators in any human being’s life and to take some of that away is to take away a little piece of your heart and soul, no matter how grateful you are for what you do have. It is a hard thing to come to terms with, you will find that most people with Charcot Marie Tooth are very quiet about their disease, they don’t complain and they frequently try as hard as they can to not have people even know that they have it and that starts for those of us like me that have the most common type, early onset 1a, because we have it when we are in grade school and junior high when kids care about not being different the most and when other kids are brutally cruel in pointing out how different you are. I feel this is something that parents need to pay more attention and teach their kids that it is not cool to be cruel and make fun of kids that are different. This applies to mental capabilities as well as physical ones. Ever since I can remember all I ever wanted was to be “normal”. As a child that was born with a physical disability my definition of normal was someone who could walk without twisting their ankles and falling down, someone who could hold their body weight with their wrists to use the monkey bars and someone who could run, all of the things that I couldn’t do. I went to a grade school which had a strange system for sorting students into classrooms. I guess the idea behind it makes a little bit of sense but they hadn’t really thought it through well enough to realize that while the idea wasn’t totally without logic but by unfortunately putting it into practice it brought out the “dark” side of children by using the method they did for determining which students was placed into each of the three classes needed to have each class be a manageable size for each grade. They gave all of the children a test when they first came to school in the first grade to determine a rough intelligence level for all of the students and split the 90 students into 3 classes of 30 children in each one for the approximate 90 first graders. I think this was the first year this school had done this, I don’t know this for a fact but they kept the same approximately 30 students together in each class as they advanced from first grade through third grade. I was put in the “smart” kids class and was with pretty much the same children for second and third grade as well.  The eventually found out that the “smart” kids were so much more capable of totally disrupting class so much so that they changed the whole system by the time I started 4^th grade and separated the 3 biggest “trouble” making boys into 3 different classes and equally distributed the smart, medium smart, and the less smart kids into three classes not differentiated by intelligence. I am sure that their initial reasons for putting the children into classes based on their “raw” IQ was to give each group of children the proper education for their IQ. What they didn’t take into account was that children are pretty smart and they are “assholes” when they figure things like this out. So I had the benefit of being in the “smart” class even though I was physically handicapped so it sort of worked out good for me because the kids all knew that even though I couldn’t run like they could I was very smart so I didn’t get made fun of like possibly I would have been had it not been a known commodity that I was one of the kids from the “smart” class. But true to form as kids will be, as soon as we figured out the classes were arranged in terms of intelligence the kids took to referring to the different classes as the smart, stupid and in between. I am sure the intent of separating us kids by intelligence was to address the different needs of the kids as this was in the early 1960’s and addressing needs of kids based on their differing IQ’s and physical abilities was fairly new territory and I am pretty sure the school was trying to do the right thing but they didn’t know what that was yet, and maybe they still don’t but they at least have come a long ways from what they did when I was in grade school. There were 3 boys that were in my 1^st, 2^nd and 3^rd grade classes that I believe were the reason for the teacher’s reevaluating the way the classes were divided. They were very smart and very busy boys, and disrupting class was their specialty and I think after 3 years of the teacher’s us “smart” kids had they were all driven crazy by those 3 boys antics in their classroom. While the motive on the part of the school administrators might have been a reasonable one but in practice it had a lot of problems, the least of which was “do you really want all the really smart kids in the same class?” When I started 4^th grade each one of the “smart ass” boys was in a different class and all the rest of the kids were divided evenly and they started a system of the kids having three different changes of teacher’s in a day for Math, English and Social Studies to address the intelligence Factor. I don’t know what they do know because I have been out of school for a very long time but I suspect they don’t practice separation by intelligence like they did when I was in grade school. So in a way starting out my first three years in grade school by being in the smart class was probably somewhat helpful for my ego but it didn’t lessen my desire to be the “same” in my being able to do physical things. I have always wished I knew what it was like to be able to run, I was always the last kid around the track. When I went to my 20^th year high school reunion I had one of the boys I went to first grade through high school with come up to me and tell me how glad he was to see that I seemed to be doing well because he remembered me as always being the slowest kid in class and said he had always thought that the teacher’s were cruel to even make me go out there and run when it was so obvious I had so much physical difficulties in doing so. It kind of made me feel good that he had that empathy for me as a child even if it probably wouldn’t have helped had I known it. The kids didn’t really make fun of me that much, partly I think because we did all go to school together for all those years and they knew me well which I do think makes it harder for kids to be mean if they aren’t anonymous. But I knew I was different and I also knew I was always the last kid to be chosen for anyone’s team and whenever I knew ahead of time that there was going to be one of the games like “dodge ball” that I hated and wasn’t any good at ahead of time I would try to get a note from my mother to say that I had to sit out of PE for the day and if all else failed I would tell my mom I was sick so I could stay home from school and not be humiliated. I turned into a real bookworm, for one thing I did love to read and enjoyed reading all sorts of stories about other people’s lives that always seemed much more exciting than mine and also it was something I could do all by myself, I cultivated a lot of hobbies that could be done alone so that way no one could hurt me. At least no one at school anyway, being molested by my stepfather would come along later on when I was in Junior High.  I became very good at what one CMT person calls “lying” but I call it self-preservation. One thing about this disease that confuses people, and allows those of us that have it to sort of avoid the truth, is that because it mainly affects the extremities our bodies are normal looking from the knees up and no one really notices that your hands are a bit skimpy on muscles unless you are trying to pull yourself up on the “monkey bars” so we can sort of pass for normal if we are really good actors and most of us are. For some reason people with CMT try very hard to hide their disability, well not really for some reason, it is because no one wants to be different or at not different in a bad way and to those of us with weak muscles being different means being physically weak. When I got older it wasn’t so important but as a child it was very important. Still I was a very busy and inquisitive child that didn’t let CMT stop me from doing a lot of things that I now consider myself brave for doing but I think I did them because I did have a curious mind that wasn’t able to totally accept that I was disabled. I took ballet lessons, I tried to learn to play the guitar but my hands were not strong enough to hold the strings down so I changed to piano and then in 6^th grade I took up the flute and played it until I quit going to high school after having my second set of operations on my ankles and didn’t have my cast off before school started again for my senior year and I was then old enough to refuse to go with a cast on my leg like I wasn’t able to do when I was only 6. I did graduate by taking a high school equivalency test so I could go to college.

This only describes my physical own disability and not how I feel about myself or disabilities overall, but this was not always the case. I was born with my disability so I have never known anything else, I didn’t become paralyzed in a crash like one of my best friend’s I had for the last 31 years, I didn’t develop MS at the age of 30 like another friend, I didn’t have a stroke at 50 like another friend, I have always been disabled and therefore I don’t know what it is like to have ever of been able, so to speak. All of my life I have always watched people who were able to run with envy, I have never been able to run, I can’t even jog, so watching people who can run causes me to wish I could experience that, but the reality is I never will. But I can walk, and that is a reality that a lot of disabled people have never been able to do and I do appreciate that. I also do believe there is a difference of the perception of the different kinds of disabled people.  I have had many friends, and have many friends, that are disabled for various reasons.  I don’t feel more sorry for myself because I have never been physically able to do the things that people who have become disabled after having lived for ten, fifteen or thirty years of their life, I just haven’t experienced the luxury of having a normal body for twenty, thirty or forty years and I never will. I can’t ever walk up stairs without pulling myself up, I can’t pull my body weight up with my hands and I have never been able to run. I will never experience these things, it doesn’t make my disability any worse than anyone else’s it just means that all disabilities are different. None are better or worse, just that they are all disabling in one way or the other and that includes mental disabilities as well.

I wasn’t miserable when I was in grade school but I was a very shy and timid child but I was bright and did try to experience as many things as I could. I was a good swimmer, I didn’t have to have as strong legs as you do to walk, and I did pretty well in swimming competitions and diving, I didn’t usually win but at least I wasn’t always last.

1969 - Camping In Canada