Meet my therapist

Yup. He's my therapist. All 8 pounds of wiggly kitten. Though I'm sure he's growing and doesn't weight just 8 pounds anymore. This is Oscar he doesn't have a Masters or a PHD, but I'm sure he's better than most of the psych. Staff I've dealt with in my entire existence. He is probably the best prescription anyone could have ever written for me. I get up in the morning because of Oscar. Seriously. He destroys half my room in till I get up, and when I'm in the process of losing it, he seems to know just when to curl up on my chest. When I suffer flash backs he's there when I come back to reality. He's makes functioning possible and the benefits are endless.

When I went about choosing my companion I kind of knew what I wanted, I sort of wanted another Persian (when I'm not here at school I live at home that we share with five other cats, 1 dog, two ponies and a horse most of them rescues). I had originally gotten a beautiful black Persian to be my companion, but she was meant to fill my younger sister's heart. Oscar is a ragdoll cross, he goes limp when you pick him up, he'll grow to about 25 pounds and the personality of the breed fit the doctor’s orders. This was probably all an after though because I saw baby Oscar and that was game over, he was coming home.

Scenically the benefits are stated for animal based therapy, and for companion animals. It makes people lives better. It makes my life better, the unconditional and unjudgingness of those cute little eyes makes the crappyness fade away.

I’m not really talking about service dogs; as much I'd like to have a service dog tailored to my needs I just don't have that kind of money, seriously between student loans I barely can scrape up enough for groceries. If I did have money I’d have a house right next to my parents, I’d have a car, I’d be able to fix my laptop, Oscar would have every cat toy and climber he ever wanted and life would be a handy dandy dream where I had no student loan or bank debt. I’d also have every assistive piece of equipment I needed and I’d be able to pay for a decent human therapist. However I have Oscar and honestly that’s probably better then all of those things combined together.
-JJ

You or me

Actually I have ABI, Acquired Brain injury. Caused by oxygen deprivation at birth (anoxic brain injury is what this is called) and also common among those who have attempted suicide (something I'm not proud to speak about, but that effects are evident). I have been brain damaged since birth. Yup, how about them apples ladies and gents. The parts of my brain they suspected have been affected are the memory parts long and short terms and I'm sure some of my fatigue and slower processing speeds can probably be attributed to that.

For the life of me, I don't understand how people can hear the word 'Brain Damage' and not understand I can't change it. It's not like a broken bone you can't stick my brain in a cast and in a couple months I'll emerge and it will be all better. I understand when other people get annoyed or lose patience with it when I try and explain that I can’t do it. I can’t make my brain do something it can’t do.

And you know what. THAT devastates me. I’m an intelligent person in a shell that seems to only want to make it hard for me. How about THEM apples. Could you eat them apples. Knowing your perfectly capable, you just have to find fifty million ways other than the straight and narrow to make it happen, because people I swear take their brains for granted.

Today all I want to do is cry. Because for the millionth time I’ve tried to explain that maybe there is something I can’t do. And even if you can get me to do it, the amount of work is going to be painful. I’ve already put in a lot of those miles. I’m not sure I’m willing to open up that bottle of pain again. Sometimes I wonder if people understand fully what they are asking me to do. Part of me wants to try just because I don’t want to let anyone down, but how many times can I let myself down. The anxiety of it just twists inside me.

This is the everyday life of someone with an invisible disability. The choose between letting someone else down or letting yourself down. This time I’m afraid to choose. Because will this make me a lesser person when it comes to doing the job I’m training for and loving? Does it mean that I won’t be able to help. This is my life and some days I just don’t know. And the biggest thing and strongest thing someone can do sometimes is admitting that.
-J

An Open letter to those without invisible disabilty or chronic illness.

I must give credit to this love piece of work to: http://notdoneliving.net/openletter/id  I felt the need to display it here however because the message is a powerful one.

Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually mis-informed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.

I depend on you – people who are able-bodied – for many things.

But most importantly, I need you to understand me.

Have you ever looked someone in the face and thought you knew everything about them. Then their are the people who after having one conversation with you, and have looked you in the eyes that they know your whole story and now will hound you with unsolicited useless advice. Then there are those who will demean you, those who will treat you like your not there when your standing right in front of you, those who will just say mean things. Then there are the people who say something that unintentionally offends, these fall into two types those who can be educated and those who just refuse to believe in anything different. In my life, I've met all kinds of people. Some like those aforementioned on this list.  But what I think I can't stand is when someone looks me in the eyes and goes "But you don't look broken or disabled".

It's funny because in my head I can't imagine someone looking into my eyes and not seeing just the joy I've learned to find in life again, but all the pain and miles behind it. This to me is part of the reason I'm so open about who I am, and my disabilities. Because somewhere in my brain I'm so sure other people see it. Funny part about it is this isn't true because my invisible disabilities are invisible.

. To sum it up I guess this says it best though:

Now back to the topic in general. I get asked this by mostly parents, how do you cope with the stupidity of some people. Well. in twenty years I've had a lot of comments thrown my way, let's just do a little scenario.
"So you have depression"
"Yes I do."
"Shouldn't you keep that behind closed doors?I mean you don't look sick or like someone who has depression"
"I have nothing to be ashamed about and I want others to know it's okay and that there is light at the end of the tunnel. Sorry your X-ray vision is broke and can't see my insides and I didn't know depression had a look"
"Trust me it's JUST all in your head, you HAVE no reason to be depressed"
"why thank you, it is all in my head, most depression is caused by a chemical imbalance, so no I don't have a reason to be depressed my chemical factory just up and quit."
"I read somewhere about some herbal juice that will cure you"
"To bad they don't make stupid juice for people like you."

As much as I wish my response to this commentary could be what I wrote above, the best strategy is to say thanks, smile and walk away. There are just people in this world who aren't going to get it. Seriously just walk away. They are the people who are going to make you want to scream and vent. I'm seriously STILL not immune to it. I'm never going to be immune to those people. And that makes part of me inside feel sadder then it should be.

I don't expect everyone to get me, to get what I go through, and for them to understand and believe what they can't see. But I guess I was raised in a bubble. Again that isn't true. My mom has taken the brunt of peoples stupidity for me, because she knew that I'd be facing a lifetime of it without her and she wanted to give me a chance to try and just be a kid, despite all the things going on inside me. and thing is about these people who need to remember is they mean well, honestly they do. And I know that doesn't change how much those comments are going to effect you and it doesn't justify it.

So the good news is, that despite all the stupid people they're going to be people who blow your mind away with unbelievable kindness, empathy and understanding, waste your time on those people, not on the ones that aren't ever going to get it.
-J

I am not invisible anymore introduction

I'm not invisible anymore. There are probably many people out there who won't be happy with this, and many who will applaud me for this. Society doesn't like people like me. I don't fit the mold. I don't fit two molds I don't fit the "Normal mold" and I don't fit the "Persons with physical disabilities mold.". Here is something society hates, when someone doesn't fit their precious molds. See I have several invisible disabilities, you can't see them. Nope. Not at all. And it will shock you the number of people who can't stand that, well maybe it won't.

I am not invisible anymore. I am not silent anymore. I am not helpless. I AM NOT INVISIBLE.
What I am is a person, a strong individual, intelligent and creative.  This blog is my attempt to create visibility to invisible disabilities, to create awareness, share my experiences good and bad, and create resources for others in my situation.