Oh Winners, How I Pity Thee

I have decided to branch out a little, and write a social commentary post today.  I have quite a few more pressing things to get done today, but there is a thought that has been nagging me all morning, so I decided to write this allowing me focus on my other more pressing matters for the rest of the day today…

I was watching the CBS Early Show this morning for a little while, and they did a story on a guy, who was standing next to Bill Gates in a school picture from back in a day.  Apparently said gentleman had been made fun of on one of the late night shows last night for looking kind of funny in the picture. In defense of the late night shows…. It was not a very charming picture, but we all have those.  The Early Show then decided to track down the guy, and see what had become of him.  The gentleman, I don’t recall his name, and in reality that is not important, had grown up to become a violinist, and an avid collector of license plates from around the world.  He has been decorating his garage with them.  One of the anchors then said “BUT before you think LOSER I want you to know that he has an eight car garage….”  It was said using the tone of voice one uses after winning a friendly game of WII bowling or something similar.  It kind stopped me dead in my track.  I have never liked the term LOSER, it has such a negative connotation to it, and the thought of a seemingly professional morning show anchor choosing to use such a derogative term about another person only to “redeem” the person by pointing out that he/she has an eight car garage made me feel extremely uncomfortable.

I have spent the morning trying to figure out what a loser is, and have been unable to come up with a sufficient answer other than as a society we define winners and losers based on our monetary and material wealth….  If that is truly the case, I know that I am a LOSER, as are most of my friends, and I am totally fine with that….

Right now, we are raising our kids not to be losers, and we teach them that losing is bad and winning is good.  But the truth is that in life there are always winners and losers, and by giving every child in a baseball tournament a trophy regardless of whether they won or lost, I think that we are creating a society of false winners.  I am not saying that the teams that did not win the tournament should be called losers, not at all, but I am saying that it is OK to acknowledge the winning team while at the same time commending the other teams for being a part of the tournament.  Becoming a well-rounded human being, to me, requires learning both how to win and how to lose…. If we continuously protect our children from the pain of losing, they will never learn how to fight for what they want or need in life; they will just expect it to be handed to them.  I would never consider a child a loser, and I think that losses are just as important as victories…

However, once we grow up, things suddenly change from all of us being winners to a societal division of winners and losers into two categories.  The haves and the have nots….Would I want to be rich?  Yes, of course I would, it would solve a lot of problems, however, would I want to become rich at the expense of others?  Not in a million years… So I find it despicable that an anchor on a morning show takes the liberty of labeling someone a loser until the mention of his/her financial and material wealth.  Before the loser comment I thought that the fact that the guys was a violinist with a passion for collecting license plates was pretty neat, it showed me passion….. And can a passionate person ever really be a loser????? I think that every day you get out of bed and take on life doing something, anything, you are passionate about makes you a winner….Every day you don’t go to bed hungry or cold makes you a winner, you survived…. Does that mean we shouldn’t strive to do better?  No, absolutely not, all of us can always do better, but some days just making it through is good enough.

I am going to take a slight turn away from the so-called definition of what a winner is seen with the eyes of society.  Yesterday, someone posted the following link on Facebook Disney Guides .  In short, it is an article from the New York Post, describing how some rich (winners) New York moms hire tour guides with disabilities to gain faster and easier access to the rides at Disney.  Disney, allows a person with a disability, easier access to the rides with significantly shorter wait times than people without disabilities.  Each person with a disability is allowed to bring up to six friends or family members along on the ride.  Initially I thought it was kind of odd that they allow a person with a disability to bring that many guests along, but after thinking about it for a moment I realized that it is so that you don’t have to go on the ride alone.  Disney is supposed to be a family experience, so I commend Disney for that.  However, I found it distasteful that these New York winners, will resort to such practices, and honestly, I also find it offensive, that a person with a disability will prostitute him/herself in that manner.  I would happily wait in the line as it would mean that I no longer have my disability.  Before getting onto a tangent about having these winners walk (or waddle) in my shoes for a day, I just want to throw out a question:  What is a winner? What is a loser? 

To all my wonderful losers out there:  You all inspire me every day, and in my book you are all winners….but who I am to label anyone a winner when I am but a (proud) loser myself…

Peace

P

PS If anyone wants to pay scootie and me $130/hour under the table to go to Disney I am up for it.  I will even throw in a little drool and put on a Goofy Costume (wouldn’t want to be recognized) at no extra cost… My “code name” will be Hyp O’Crite, and you can reach me at 1-800-666-5673.

Contact email keepinghopejourney@gmail.com

The Complexities of Time

Every once in a while, when driving down the road I hear the following words on the radio:

Eighty-Nine Cents in the ash tray
Half empty bottle of Gatorade rolling in the floorboard

The words are the first two lines of Lee Brice's song "I Drive Your Truck", I turn the volume up, and remember.  The song is about how a man is dealing with the grief associated with the loss of a brother.  It was a year ago, Yesterday, that my brother, Jesper, passed away.  I was talking about it with a friend the other day, and he responded with the usual cliche "WOW, time sure does fly".  My response back to him was "Yes, it does.  I have also heard that time is supposed to heal, but apparently it is unable to do both at the same time".

The truth is, that the pain of losing my brother is no less today than it was a year ago, the wound is raw, the grief is awful.  He is gone, he is not coming back....

I jokingly told Tom, that if I were to assign a gender to time, it would be male, due to its inability to multitask....

For the last several days before the "anniversary" I was wondering how I was supposed to feel, what I was supposed to do etc.  I didn't want to do the wrong thing.  It turns out, that there are no rights or wrongs, only the moment.... Despite being one of the saddest days, Yesterday, in its own right, also turned out to be a good day.

Jesper's favorite color was red, I don't have any red shirts, so to honor him I made myself a red friendship bracelet with black stripes to wear, it went on my left wrist right next to the forget me not tattoo I have to remember and honor him by.  It felt good!  

I spoke to my mom on the phone for a very long time, one of the highlights of the day!  

Rather than wondering how I was supposed to feel, I just allowed myself to feel, to cry, to honor, and to remember.... 

Jesper had an amazing spirit, and the ability to live in the moment....

While speaking with my mother, I enjoyed the moment 

When I attached the bracelet to my wrist I enjoyed the moment

When I cried because I missed him, I felt in the moment....

There is a lot to be said about being moments.....

Later, last night, my perception of time did change just a little bit....time hasn't healed the pain of Jesper's passing, however, time allowed me to feel a deep happiness a midst all the pain, when I found out that I am once again going to be an aunt!!!!

Maybe time doesn't heal, maybe time just equips us with the ability to feel more than one thing at a time without conflicts..... I am very sad and very happy, and I have no problems feeling both emotions at the same time.....

So maybe, rather than being unable to multitask, time is much more than I have ever given it credit for.  Maybe time does heal in its own subtle ways, maybe it is a gift God has sent us to learn about moments...

I've cussed, I've prayed, I've said goodbye

Shook my fist and asked God why

These days when I'm missing you this much

I sing along, loudly, when Lee Brice gets to this part, and I hope time never changes that.

Peace

P

Contact keepinghopejourney@gmail.com

Decisions

Last year I was faced with that decision when I had to make the choice as to whether or not I should enter into treatment for my eating disorder.  This Saturday, February 16, will mark the one year anniversary.  I am not sure what to call it, anniversary seems like something you celebrate, and admitting that you can no longer handle things on your own, and putting yourself completely into the hands of others does not seem like it should be celebrated... or should it?

When I look at the quote, I realize that I actually chose both... I chose to walk away from everything for a while in an attempt to find the strength to try harder.  It has been a year now, and I can't help but reflect on the past year.... Did I find the strength to try harder?

Have I fully recovered from my eating disorder?  It would be a flat out lie if I said yes.  I still struggle with body dysmorphia, there is always a whale in the mirror when I happen upon one (a mirror that is, not a whale) .  I still have some very irrational fears when it comes to food, I have strict definitions of which foods are safe and which aren't.  Lately it has become increasingly difficult for me to eat when I am around other people, even if they are people I love and trust.  So, definitely not fully recovered.  

But.... on the other hand, I have won some very tough battles.  I am getting better at setting boundaries, I still don't completely master the skill, but the word NO, has actually made its way into my vocabulary.  I no longer always say "sure" or "yes" when asked to do things I either don't feel like doing, or things I don't have time to do.  The old Pernille, would have worked herself to exhaustion in order to fulfill all her commitments...

The old Pernille would not have accepted the scooter, but the new me embraced it, I now go places and do things I would have never dreamed of doing a year ago.  

I quit a job that wasn't good for me, and I discontinued working on starting my own business when I recognized the signs of "burnout".  A year ago, (actually more like a couple of months ago), I would have looked at the decision as yet another failure. More proof of my inadequacy.  I am not going to lie and say it doesn't hurt at all.  Of course it does, a little, but I am somewhat successful in viewing it as something I tried on for size, and the size was wrong.  Sometimes wearing nothing at all feels better than wearing something that doesn't fit.

This Saturday I am going to be a participant in the annual NEDA (National Eating Disorders Association) walk in Tampa, I am proud, that I am well enough celebrate how far I have come, and also how far my friends have come.  I am happy that I will be a part of something bigger than me, something that serves to educate and to make a difference in so many people's lives...

I have been somewhat successful at trying harder.  Rome wasn't built in one day, and even though I am not fully recovered, I do believe that somewhere inside of me there is a little voice encouraging me to try harder. And despite that fact that the  the journey is painful, the voice also tells me to enjoy the process, and the moments where I realize that I am doing something I would not have done a year ago...

Peace

P

Contact email keepinghopejourney@gmail.com

Abusing my privilege

For the first time, I am going to use my blog to ask for something... I am going to participate in a NEDA (National Eating Disorders Association) walk in Tampa on February 16th.  I am doing it because I have met so many brave men and women fighting eating disorders, I am not alone.  I have met people who have made it out on the other side and recovered completely.  It is possible, but we need more awareness and education.  Please check out my fundraising site.  Do not feel obligated to donate money, but please take a little time to educate yourselves...

Peace
P
My NEDA Walk fundraising page

Contact email keepinghopejourney@gmail.com

Cleaning off the Paint Brushes Enjoying the Process Part II

Recently I wrote a blog about enjoying the process without expecting perfection.  See Keeping Hope Journey: Enjoying the Process

This post is somewhat of a continuation of that post.  The ingredients in this post are:

• Canvas
• Mod Podge
• Acrylic Paint
• Stairway to Heaven sheet music
• Scissors
• Misc paint brushes
• Lots of newspaper (to protect the table)
• Old skinny jeans
• Scrap book paper
• Burlap
• Stencil
• Cheesy little words describing life
• Black Sharpie marker
• Equal portions of curiosity, patience,  awe, enjoyment, and poorly lit photos to document the process.

The final product ended up looking like this:

My first ever mixed media art piece,  and I kind of like the outcome, little imperfections and all. Taking a picture to do the project justice was a lot harder than to actually create it.

The purpose of this post is not to describe the process of making a piece of art, but to show to myself and the world, that on a very small scale I am capable of practicing what I preached at the end of the first part of my Enjoying the Process post.

Creating my tree of life took time, much longer than it usually takes me to create a piece of art.  I started out with a blank canvas and the mentioned supplies.  Right now, my life is more or less a blank canvas.  Last year was a BAD year, and over the past couple of weeks I have made some decisions that have helped me create a mostly blank canvas...I decided to give up on starting my own social media marketing and PR business.  My heart wasn't in it, and I no longer enjoyed the process, all it did was to cause me stress.

My goal with the art project was to play around with mixed media, I had never done it before, I had no expectations, and with a blank canvas it seemed like a fun thing to try.

Creating the piece forced me to do what I am terrible at doing in life... It forced me to wait for paint (mostly glue, but paint just sounds better) to dry.  It forced me to take breaks, in which I could think about what I liked about the picture at that point, and to think about what would look nice next.

So far, with my newly created blank canvas of life, I have started to put on the first layer, I have started taking horseback riding lessons.  I go once a week, which gives me time to reflect on what I did and what I learned during the lesson, and it also gives me time to think about what challenges I may want to take on the following week....Right now, the first layer is drying.  Another layer I have added is that I have started to attend DBT (Dialectical Behavior Therapy) at FSU's psychology clinic.  This is a thick layer, as it required a long term commitment on my part, it is suggested that you attend group therapy once a week for about a year. It is a thick layer, but much like the horseback riding, I am forced to every single week let the layer dry...and weekly I will need to carefully tweak it to make it better.

I have yet to start really adding color to my picture, but I have a few colors in mind I may try out over the next few months...

I have no idea what the final picture will look like, I just know that by slowly adding a layer at a time, the canvas may some day show a picture, a picture with imperfections I am sure, but none the less a picture I created by simply reflecting, tasting, smelling, listening, and most importantly... By enjoying the process.

Peace Friends.

P

Contact email keepinghopejourney@gmail.com

The Myth of Altruism

As you may have noticed in my recent blogs,  I am currently going through a "process" that is dominated by confusion, anger, self pity, self loathing, and hopelessness.  OK, this sounds really bad, but the truth is that lately I have been thinking a lot about what it is I want to do with my life.  Clearly, what I have done so far is not working.....

I have always had a strong drive to help people, it is really nothing I have sought after, it is just there.   Sometimes I have success, and sometimes, my lack of ability to set healthy boundaries get me into some deep water... However, that being said... I like to help people...

During a conversation with a friend about a week ago, we spoke about how I am confused about what I want to do, what I am good at etc, and I said that I felt that the statement "I just want to help people" is a cliche.  But that is really what I want to do: help people.  The reason for the cliche statement was, that I don't think there is such a thing as true altruism, OK never say never, I know there are examples of completely selfless people out there, but in the population at large, I think it is very rare.

I want to help people  because it makes me feel good, it makes God happy, and I like to make God happy...I, for one know that my altruism can fit into a very small spot....When I was teaching I know that I helped a lot of young people, I know that I made a difference in some lives.  As a matter of fact, I ran into a former student the other day, who told me that she has changed her college major to become a math teacher because of me....That made me feel good, but the stress and need for results, took away the pleasure of helping these kids.  I always cared about the kids and my first priority was always to do everything in my power to help them.  But.... I found no peace in it....Thus.... my altruism fits in a very small spot.  If all I desired was to help other people, I should have been happy doing what I was doing....

However, when I drive down the road and see a homeless person standing out in the heat with no food or drink (I know I am a sucker, and that some of them aren't really homeless etc), it makes me happy to give them a bottle of Gatorade, a granola bar, or whatever else I may have in the car at the time.  It feels good, I don't like seeing people suffer, and God tells us to help those less fortunate than us.  I always fool myself into thinking that there are no strings attached, and that I just give people food and drink out of the goodness of my heart, but there is always the thought in the back of my head thinking; hopefully someone will do the same for me if I am ever in that situation, or the creepy nasty "I am happy it isn't me" thought.

Strings or no strings...I have decided that I want to spend more time being something for others, because I like to help others,  because it makes me feel useful, needed, and best of all... it makes me feel warm and fuzzy on the inside because it makes both me and God happy.

My goal for the near future will be to explore, to learn, and to "enjoy the process" of trying out things, even if it is just to cross them off the list as "bad options".  Who knows where it will bring me....

Peace

P

Contact email keepinghopejourney@gmail.com

Enjoying the Process

It is Saturday night, I am contently sitting in my chair, resting after a pretty good day.  I went horseback riding TWICE and I did not fall off.

Tom is out with some friends.  I was browsing through the channels on our TV, and there really isn't a lot on on a Saturday night.  I  briefly looked at a new VH1 show called Black Ink or something like that.  It is yet another completely brain dead reality show designed to do nothing but make you feel good and normal...  Well I am not normal, so I decided to sit down, enjoy some writing while listening to an 80's radio station on Spotify.

I am a terrible decision maker.... I don't have trouble making decisions (other than what to wear when I leave home.....), I make a lot of decisions, but I seem to change my mind with the same frequency.  The decisions I have made often have to do with the ancient question "What do I want to be when I grow up?".  The answer to the question has been clear to me for a few years.  "I want to be the first person to beat muscular dystrophy".  Nothing more, nothing less....Pretty simple eh? Well um no.... It is not that simple at all, because it is not a realistic goal, it is impossible.  I cannot cure myself of MD.  S@(*(*^*# I finally said it. I cannot cure myself of MD, and you know what.  It is so very painful to accept it, especially since it has been my ONLY wish for years.  And the truth is... I am not even close to accepting in, I am just in the middle of a very painful process.

By being so occupied (OK obsessed) with wanting to create my own miracle, I have lost sight of all the little things in life, that make this world a wonderful place, the things that give meaning to life DESPITE the fact that I have MD.  Nothing matters as long as I have MD.  I don't care that:

• I am a good teacher, who cares? there are thousands of able bodied people out there that are exceptional teachers...
• I know how to knit, So what?  there are tons of able bodied people out there who knit much better than I do, so why does it matter, it is not as if I will be able to open a hat and scarf store when I can only follow simple patterns...
• I can make jewelry that people like.   But when I look at Etsy.com  it is clear that my jewelry is nothing compared to what other people sell on there.
• I am a good cook... Awesome.... but I don't want to eat the food, it is dangerous.....at least that it what my eating disorder is telling me.
• I am a somewhat decent writer, cool beanz, but it doesn't pay the bills
• I am intelligent, sure, but what good is a decent intelligence when I refuse to use it because I loathe myself for not being perfect at the above mentioned skills and when I minimize its significance because I have MD..? 

Because of my obsession with beating MD, I have set some extremely high standards for myself.  If I am not perfect at what I do, it doesn't matter.  My mind made up the notion that since I have a disability, I am entitled to be perfect at something.  Twisted, right?  But that is none the less the prison I have put myself into.    

My twisted pursuit for perfection is what makes me so exceptionally good at making decisions, every time something sparks a little interest I dive in feet first thinking that this is it... This is what I will be perfect at, this is what will make my feelings of inadequacy shrink to a tolerable level, this might be what will make me be better able to work with my limitations rather than constantly fight them....

I thought I would make a good business person, so I went to business school, I even got a Masters Degree in Management from Colorado Technical University.  But err well yeah, not so much, I am not cut out for the back stabbing, lying and cheating I saw the few years I spent working in the business world.

• STRIKE 1... I am a failure, I am not ruthless. I spent years and years going to school, got myself into debt only to figure out that being a "fancy" business person wasn't for me...

Well, maybe being a teacher would be a good match, I kind of like sharing my knowledge with people.  I became a substitute teacher (it was the only job I could get, no businesses hire project managers with low self esteem).  I didn't know I had MD at the time, but something was up.  Walking the hallways in fear of being knocked over by the kids really took away from the joy I probably could have felt.

•  STRIKE 2... I am a failure, I can't even do a job that basically only requires you to babysit.  Why? Because I wanted to be perfect, I wanted to teach the kids what I could while I was their teacher.  But they didn't care, they were used to disillusioned subs with no desire for anything but a meager paycheck every other week.  I would probably have ended up as one of them had I continued....

Maybe I shouldn't give up teaching right away... I got my temporary license, and when we moved to Tallahassee I got a job with a private tutoring business. It could have been enjoyable, but once again my perfectionism got in the way. I was so passionate about these kids, I really really wanted to help them, and even though I know for a fact that I did make a difference in many lives it just wasn't enough. Every time I was unable to reach that really difficult kid, it ended up stressing me out.  When a student really struggled in school I would spend hours at home trying to figure out how to help.

• STRIKE 3... I am a failure... I can't change the life of every single student I encounter.  It was my job to help, and sometimes I failed.  I wasn't perfect...off with my head... jump into a deep hole without a ladder to help you get out.  At least I can't screw things up down there.....Three strikes and you are out!

I could continue with all my perceived failures from now on until the end of the world, as we established earlier in the blog, anything short of perfection is a failure as long as I have MD.

But.....Yesterday I ran into two different thoughts... The first being the picture below:

That's it.... I am still a child trying to figure out what I want to do and what I want to be, I bought into the misconception that you are grown up when you leave college... so no wonder that I failed. I didn't have the house, dog, two and a half kids, volvo, and career as so many seem to have by the time I turned 25.  I could be of those people who will just keep dabbling without ever settling  I hope not, because most of my dabbling ventures have turned into what I perceive to be disasters..... I am pretty close to a 90% success rate there..It is, however,  good to know that I still have about two years of childhood left.  If I haven't figured it out by the time I turn 40, I should find comfort in the possibility of having about 20 years of teen angst to look forward to .... It's all good as long as I don't really have to grow up...

The second thought, really wasn't my thought, it came from me telling someone that I can let go of my obsession with perfection when doing art.  I truly truly truly enjoy the process of creating a piece of art.  It is soothing, comforting, and there is no pressure.  The reason why there is no pressure is that I have no ambitions to become a new Salvador Dali, Rembrandt, or Picasso.  That would be crazy, I can't even draw a stick man without using a stencil.  But guess what it does not matter... it is the process that I like... I set out to do something with no expectations for the outcome other than having been able to explore, while being able to express thoughts and feelings without having to use words.  My art does not have to be perfect.

I wonder if it would be possible to apply that concept to life?  Would it be possible that the next time I find the right match that I would be able to just enjoy the process, of exploring, touching, feeling, smelling, tasting etc before deciding whether or not it is something I would enjoy doing for the rest of my life?   Would it be possible to approach life as an art project, where all I expect out of it is the best I can do, and be happy with that?  Would it be possible for me not to consider every failed venture as a strike against my value as a human being?

To be continued.............

P
Contact email keepinghopejourney@gmail.com

32 Candles

Happy Birthday Jesper.  You would have been 32 today....I know you are in a better place, and that I should be celebrating your life, and not keep mourning your death.  But... I don't know how to do that right now.

Jesper, it took me a long time to figure out that you really died.  I knew it, I told people, and sometimes I even cried.  But it wasn't until I went home and actually saw your grave, and felt the empty space that your beautiful smile and spirit usually occupied, that I finallly understood the finality of it all....  You weren't there.  Jesper, to me you didn't die until December 20th 2012, the day it became real.

I want you to know, that you were loved, I loved you, Tom loved you, everybody loved you.  You brought so much to the world, if there ever was a fighter out there, it was you.  Your most admirable quality was your ability to just live in the now, you did not carry the pain of the past with you, nor did you worry about the pain of tomorrow.  We have so many wonderful memories from your life... You were always deadly honest, when the priest called Tom Thomas in the church when we got married, you yelled "Not Thomas, TOM".  Once as kids all three of us were running around the backyard in our swimsuits, we have a picture, that still haunts me.....I remember standing outside your bedroom door listening to you speaking to yourself at the end of the day while you were recovering from aphasia.  We knew that you had not lost your ability to speak, you just needed to find your voice again, and boy did you find it.... You really got it back at Easter one year.  I am not quite sure what was up, but you let all of us have it, you were especially hard on Farfar.  My guess is that the two of you have probably worked all that out by now....

You were a tough cookie, and every day I grieve, I grieve because I miss you, I grieve because I never got to say good bye to you, I grieve out of selfishness.....

I don't own a red shirt.... but I am wearing my red pants today to remember you, and Tom put on the closest thing he has to a red shirt when he went to work.

We all cry, we all miss you, and sometimes the knowledge that you are watching over us, and that we will see you again some day, only offers very little consolation.

I love you Jesper, I miss you.....

P

Contact email keepinghopejourney@gmail.com

Making Molehills Out Of Mountains With Strategically Placed Chairs

I am an excellent listener, but…. I am absolutely horrible at trusting people, and following directions… There are times, where I dig myself into a deep black hole, and then get surprised when I notice that I can’t find my way back up because I forgot to bring a ladder or a rope… I end up standing on the bottom yelling for help…. The help is always there, I listen, and then….. I do the opposite of what I am told to do to get back out of the hole.

I have a skewed view of the truth, and I set impossible standards for myself, based on what I think I should be like to be a real person.  These standards are what cause me to time after time to dig the before mentioned hole.  Another analogy would be that I make mountains out of molehills, and become frustrated when the mountain will not go away when I tell it to.  I allow my physical limitations to be the reason why I am not able to turn the mountains back into molehills.  I don’t think my talents are worth anything as long as I can’t do things able bodied people my age can.  I totally disregard them, or give up when I see that there are millions of people out there who are better than me.  Why should I be noticed in the big world?

Right now there is a huge mountain in front of me, a mountain that needs to be turned into molehills, but Pernille does not believe in molehills, she wants to tear the mountain down right here and right now, and if she can’t it is only because she is inadequate, a weak subhuman species.   I want to make everything perfect for everybody all the time, and if I can’t I just want to hide at home because I am ashamed of myself.

I know that what I need to do is to strategically, place chairs, and make myself use them in the process of turning the mountain into molehills.  Yes, I need to use them….  (This is not an original Pernille thought, I stole it).  As I said above, I tend to uncritically attack the mountain with no regard for how I can overcome it, and then I  get mad at myself for not being able to do it, I give up, and let the mountain sit there as a reminder to me of how inadequate I am. 

I need to understand that the fact, that I cannot physically spring clean the entire house, does not mean that I can’t do anything.  By strategically placing chairs and reminding myself that when I need a break it is OK to sit down and relax.  I tried it Yesterday, and it worked (at least for the time being)….  I had set a goal of de-cluttering the kitchen (again I do that every day it seems), and of getting rid of all of our old newspapers.

Getting rid of the papers is something that would take an able bodied person around 10 minutes.  The person would just have to bend down, pick up the papers, and put them into a garbage bag.  However, it is not quite as easy for me.  I cannot bend down and pick up the papers, I have to use my grabber, and pick up a very small amount of papers at a time, a process that can easily take between 30 and 45 minutes, and by the time I am done, I can almost guarantee you that my shoulders will be very sore, and I may even be worn out for the rest of the day.  Today I set up a chair, and promised myself that when I could feel the fatigue, or frustration start sneaking up, I would sit down and do something I like to do for a bit, something I am good at, something that has nothing to do with MD. 

I did it, when I felt like either just throwing the grabber away saying “to hell with the bleeping papers”, or when I was tempted to just power through beyond what I probably should do in the spirit of spiting the MD and the world by saying “watch me…. You say I can’t, but I did”.  I took a break and started redesigning my blog.  A process that turned out to be a lot lengthier than I thought it would, so when that started to frustrate me… I went back, and killed the rest of the paper pile, and I can proudly say that my shoulders are only slightly sore tonight, and I have a blog that looks like a mess….

It all seems like a success story, and I should feel encouraged by it, knowing that I set a goal, and reached it by using my brain… But…I don’t… I look around the house and inside my brain and see nothing but “shoulds”.   I should scrub the floors, I should make the bed, I should, I should, I should….I took at molehill out of the mountain, and got rid of it, but the ugly lies and the false thoughts are still there….

The right thing to do would be to look at the mountain, identify the molehills, pull them out one by one, and set up two chairs next to every single one of them, and focus on them one at a time….. Anyone, with the right chair and teamwork, can conquer a molehill, and eventually also the mountain.   

It is such a simple concept, but yet so incredibly hard for this messed up little brain to grasp, accept, and use.  My prayer at the end of today, maybe even every day until I get it, should be something like

•   “God, please help me release myself from my prison of perfection, I will never be perfect in this world, but in your eyes, I am wonderfully and fearfully made.  Please help me open my heart so I will finally be willing to let you teach me what it is you want me to do, in order do your will, Amen”.

Peace

P
 Contact email keepinghopejourney@gmail.com

Under Construction

In the spirit of.... well, in the spirit... I have decided to make some changes to the layout of my blog.  I haven't done any remodeling since I started writing a long time ago.  Please bear with me as I try to make it look spiffy.... I also have a few posts in the works.  Stay tuned

Peace

P

Contact email keepinghopejourney@gmail.com

Objects in Mirror are Smaller Than They Appear

I was reading a blog called ED-Bites. It is an amazing blog written by a beautiful person called Carrie, who is describing how she is recovering from Anorexia. What is amazing about the blog is her honesty about how she still sometimes fall into the "woes" of her eating disorder. She wrote a series on relapse prevention. You can read it here:Ed Bites 

So many of the things she writes about ring true, and I know, that I am no angel, I know that right now in my life I am ignoring a lot of Yellow Lights, and possibly even a few Red Lights. I am not going to focus on the "warning lights" in this post, but rather on body dysmorphia once again.

While reading the blog I fell over the statement "objects in mirror are smaller than they appear". I loved the statement, but at the same time it also made me a little sad, as I am not yet at a point where I can believe it. Objects in mirror are smaller than they appear. What a profound statement that people with body dysmorphia just need to believe, and accept. But I can't......

When I go to the fair and walk through the "mirror house", it is easier for me to believe. I am sure you have all had fun going through those at some point in your lives. Some mirrors make you tall and skinny, others make you short and fat. Some distort your body to an extent, that is so unreal, that everybody can laugh at it. While in the mirror house, I become mesmerized by the tall and skinny mirror. THAT IS WHAT I WANT TO LOOK LIKE. I want to be the 5"9'inches and X amount of pounds I so clearly see. The dangerous thing about the tall and skinny mirror is that the distortion is so, that what you see looks real....... No funny shapes, no facial distortion, just you, tall and skinny.

There is no need for me to stop in front of the short and fat mirror, I already have one at home. It is called my "bedroom mirror", and after looking at the tall and skinny mirror, a regular mirror will probably have the short and fat effect on most people. The mirror I use for checking what my outfit for the day is a regular mirror, a mirror that clearly shows my puny 5"5', and XX amount of pounds. A mirror that shows every bit of fat I see, even if others don't. A mirror showing muffin tops, big thighs, double chins, back fat etc etc etc. Things people tell me aren't there.

Does this make sense? No, not really. I want to believe that "Objects in mirror are smaller than they appear" statement, but it is so very hard when you can go to the mirror house and see yourself tall and skinny. The mirror at home is just a regular mirror, but yet, to me I see the short fat person others only see in the distortion mirror at the fair.

Mirrors are tricky.... sneaky little ugly demons, that lie to you.... Dealing with body dysmorphic disorder is believing that the short and fat mirror at the fair is telling the truth. Every day you put yourself in front of the short and fat mirror, believing it is a regular mirror, and not understanding that what you see is a distortion.....

I need to learn to understand, that the mirror in my bedroom is a regular mirror, but that my brain has an app programmed into it, turning it into a short and fat mirror, thus making what I see different from what others see. I see what I perceive to be the truth, but so do others.... The problem is that we are looking at two different reflections...

 Peace
 P

 Contact email keepinghopejourney@gmail.com

Anna and Carrie

I miss writing.... Very few things have moved me in a way that has allowed me to write a blog post for a long time. It is not that I am lacking subjects to write about, but I have just really struggled with expressing myself. 2012 has been a year I don't ever wish to repeat, and I know in my heart 2013 will be better. Yesterday I was introduced to a young lady called Anna. Anna Rexia, is her full name. She is a Halloween costume depicting a girl with anorexia. You can read about Anna here <"http://thechart.blogs.cnn.com/2011/10/07/sexy-anorexia-halloween-costume-controversy/"> I was a little flabbergasted, to say the least, when my friend introduced me to Anna. I mean really???? Who would think that making a costume like that is funny. A little later, I started thinking a little more about the costume, and what it symbolized. To me, the costume, albeit being very distasteful, yet again showed me how ignorant people are, when it comes to understanding eating disorders. I honestly don't think there was any malicious intent when the costume was created, only ignorance. I do, as most of you probably know, suffer from an eating disorder myself. I was in treatment for nearly six weeks earlier this year. Whereas I don't doubt that the wonderful people at Shands in Gainesville played a huge part in the fact that I am still alive, and still fighting, I do know that the only person who can fight the fight, and hopefully win, is me. Starting to eat again is so much more than just a decision, it is hard work. Every single day I fight with food. Food is medicine, I need it to live, but a lot of people have no idea about all the struggles associated with wanting to recover. I want it all...... I want to live and be healthy, I want to no longer be afraid of food, but I also don't want to gain any weight, I don't want to be fat. One of the hardest things to deal with when you suffer from an eating disorder, is body dysmorphia...body dysmorphia is a disorder, where the individual perceives a part of his or her body to have a defect. To me, my "defect" is that when I look in the mirror I don't see me, I only see fat. Yup, I have no idea what I look like. I don't compare myself to pictures in magazines, I never did, but every time we go out I look at women and try to figure out what I look like, and according to Tom, I am always smaller than the women I pick. Really??? To return to my new acquaintance, Anna, as I said, I think the costume shows nothing but ignorance... Unfortunately, this ignorance is prevalent in society. While at Shands, we were talking about people, and we tried to prepare for some of the things we would meet when getting back into the real world. The biggest misconception I have encountered, is when people, out of kindness, offer me food that is high in calories and fat, thinking that I want to gain weight, that all I need is just to eat their fried chicken, or their pork stew. These people are nothing but kind, they have my best interest at heart, but.... if they only knew the pain of the knife stabbing me every time I am told to just eat, to eat a cheese burger, to eat pork stew, to eat fried chicken, they would not be doing it. In addition to dealing with, and accepting that I have a warped view of my body, it is so incredibly hard to just allow people to be people. There are so many kind remarks, that to a person with an eating disorder are nothing but painful, they stab, and at times confirm my feelings of being fat. A short while ago, a person told me that I had gained some weight, and that it was good to see some meat on me. The comment was meant as a compliment, but to me, the person might as well have called me a fat cow.... I can't change the world, people are ignorant, I am ignorant. But if there is one thing I want to do in 2013, it is to educate....The Anna Rexia costume to me is not different than a C(arrie) Ripple costume making fun of a person with a disability, or the John Downs costume depicting a person born with downs syndrome.. Eating Disorders are not lifestyle choices, they are real, deadly diseases.... Please educate yourselves... You can read more on the following websites: and http://www.anad.org/get-information/about-eating-disorders/?gclid=CP_9jq3-nLQCFQ2znQodqWgAbw Peace, P Contact email keepinghopejourney@gmail.com

Things to ponder....

I am finding myself in a pondering mood today, not that it is that unusual, I tend to think a lot about a lot of things. After writing my blog on inertia the other night I started thinking about Newton, and what he did etc. No matter how much I try not to live in the world of "what ifs" every once in a while a what if will sneak its way into my little brain. The what if of today is "What would have happened to gravity if Newton and Tell had been in the same place at the same time?". Do I have to much time on my hands?, nah, not really, I ponder best when working, and came up with the question while making protein bars and dusting off the living room. My take on the answer is this: If William and Isaac had been in the same place at the same, there could have been a real possibility of William shooting down the apple before it hit Isaac in the head. In the event that had happened, gravity would likely never have been discovered. Had gravity never been discovered, life would have been a lot easier for a lot of people, myself included. See, if there was no gravity, my MD would only have a minor impact on my life, as I would not have to use muscles to stand up right, when walking I could just choose to float and not look like a silly duck, or have to worry about falling. Nobody would have to worry about falling! It would require very little strength to move large objects from one place to another, by taking advantage of Newton's First Law, all you would have to do would be to slightly tap the object to make it go in the direction you want it to! I have quite possibly wasted a few minutes of your life by posting this, I am trying to get back into the habit of blogging more often again. I currently have a blog on Sarcasm in the works. It is yet another one of the questions I have been pondering. What is sarcasm? and why do some people not get it? :-) P Contact email keepinghopejourney@gmail.com

Law of Inertia

Newton's First Law States that: an object not subject to any net external force moves at a constant velocity. Thus an object will continue moving at its current velocity until some force causes its speed or direction to change. It has been close to 25 years since my dad taught me about Newton's First Law. I have a couple of issues with that.... The first issue is that it has clearly not been close to 25 years since I was in the 7th grade! I mean how would I possibly be able to remember Newton's First Law for that long? The second issue is that Newton's First Law seems to be to blame for my complete lack of (or overabundance of)focus. Sounds kind of hocus pocus right? But as much as I want it to be, I don't think it is. I have amazing focus, for real. I can focus on spinning around in circles and not accomplish anything for days on end!!! That is focus right? I tend to complain about not being able to focus on the things I want to, and need to do. This means that at any given time I am super focused on not being focused, causing me to accomplish nothing. It seems as if I am in orbit around some Utopian world my brain has created. I am orbiting around this perception I have of what a good life is, trying to find a way into it, only to find that I am afraid to enter because my definition does not match reality. I reach out asking people to help me break through. In reality I am afraid of the work, and ask people break through for me. I have found out what the problem isn't, and also what the solution isn't. The problem isn't that people aren't trying to knock me out of orbit. rust me, I have received several pushes and shoves trying to accomplish just that, but for some ODD reason, the time it takes for my focus to readjust is so minimal that inertia isn't broken, the tiny shove in one direction immediately causes the focus to readjust so orbiting can be resumed without interruption. So the problem isn't that I lack focus, nor is the solution to depend 100% on outside forces to nudge me. After all I just proved that my focus is strong enough to eliminate the effects of outside forces on my little orbit. Manipulation can be fun; it is a way for your brain to twist reality just enough to make it fit your perceptions. I may have manipulated the Law of Inertia just a bit... We deceive ourselves into thinking that manipulating the world around us will help make the world more like the Utopian world we wish to live in. Using Newton's First Law as a scapegoat for my perceived lack of focus is really nothing but that, a scapegoat. I manipulated it, in reality,the slightest nudge should disturb the orbit, otherwise the law is invalid, right? So, even when the focus kicks in to haul the brain back into orbit, a change has taken place be it ever so slight! For just a little while, the circle wasn't perfect, and even though a new, perfect circle is created, the disturbance was there. So the solution is not to try to manipulate the reality Isaac's observations. I have an infinite number of those disturbances in my life. I am surrounded by amazing people, who want to help me, guide me, love me, and only wish the best for me. And even though I would like to think that I listen, I have come to understand that my subconscious is in charge of my focus. You can compare my subconscious to a a very scared turtle, every time it feels a "nudge" it sticks its head out to see what is going on, only to quickly withdraw it before it gets burned. Every time someone nudges me I feel good, and only want to do what is required of me, but time after time my subconsciousness hijacks my focus and brings it back into orbit. The solution is both simple, and hard. Simple because Proverbs 16.9 clearly tells you what it is: The mind of man plans his way, But the Lord directs his steps.. Hard because our small brains have a hard time understanding what God means by that; don't we have free will? What good is it to have free will if God directs us anyway?. The free will is the option we have of doing things the easy way or the hard way. At any given moment in time we are where God wants us to be, we can accept that, do our part by staying healthy, focusing on the things we have been given, and not the things we have lost. The hard thing, however, is when you time after time experience what you perceive to be losses, it can become a struggle to figure out what God's plans for you are. I tend to get stuck grieving my losses, I get blinded and forget about all the things I have been given. These past weeks I have run into the phrase "Let go and let God" a million times. I have been reading a series of novels showing the difference between asking God for what you want, and not for what you need! My goal is to learn to ask for what I need, and do what I can with just that. It will take time and hard work, but I need to be more aware of all the nudges my orbit receives, and rather than allowing my subconscious mind to immediately draw it back, I need to allow it to flow with the nudges. My thinking leads me to believe that the nudges are not coincidences. It will take patience, blood, sweat, tears, prayers, and a lot of focus. "For I know the plans that I have for you,’ declares the Lord, ‘plans for welfare and not for calamity to give you a future and a hope" Jeremiah 29:11 I am grateful for all my nudgers out there. I can be difficult, but I hope you know that I appreciate you all for what you do, your patience, your honesty, and your friendship. You all know who you are! Peace, hope and FOCUS. P Contact email keepinghopejourney@gmail.com

Remember Omaha

"Right after that, I’m sitting there wondering what the hell am I gonna do; the sand dune is about three feet high, and I’m sitting against it. It gave you protection from small arms fire, but not from mortars. So I’m crouched up there, shaking, cold, freezing to death, you’re soaking wet, wondering what the hell, what’s going on? What happened to our plan? Trying to make some reason out of this chaos. And all I could see was chaos, catastrophe. Boats burning, smoking, dead men all along the water’s edge, floating bodies. Craft getting hit. It was awful, awful, awful. I said, "Oh, Jesus, something’s not going right here." And during that time this guy goes staggering along about fifty, sixty yards from me, staggering, I don’t know how the hell he was walking. His backpack was hanging down his back, his clothes were in shreds, one arm dangled, it must have been hit. And he looked towards me, I don’t know why but somehow he looked back towards me and half his face was gone. And something said, "I know that guy." It was his stature, his walk, something about him. I said, "I know that guy." (Source: http://www.tankbooks.com/stories/omaha.htm )

It has been a while since I last updated my blog, a long while as a matter of fact. I chose to start this blog with part of a story describing what happened on Omaha Beach on D-Day. The main reason is that the story is about hopelessness, and about being put in a terrible situation that seems to have no chance of a positive outcome. But, on the other hand, it also shows human resilience, courage, and kindness. Right now I am finding myself on my own private Omaha Beach, the situation is by no means as dire as the one described by Chuck Hurlbut, but in many ways I do find myself resting against a sand dune trying to gather my thoughts, and the strength to move on. The first three months of 2012 have been eventful to say the least. I started the year off feeling really depressed and anxious, for the longest time I had had trouble eating, and found a strange comfort in not eating. Life was painful, and I felt that I no longer had control over anything. I knew that I was hurting myself by not eating, but I didn't care, I thought that by choosing not to eat, at least I had a little bit of control. In early January I also managed to burn myself on a cup of boiling tea water, it left me with a nasty blister and scar. It was one of those, crap this sucks moments. I will have the scar to remember it by for the rest of my life.

January, however, was not all bad, I went on a trip to California to visit a dear friend in LA. I had some wonderful travel companions, and I had a great time. It was the first time in probably five years that Tom and I spent a night apart. I felt confident and comfortable being with my friends, and having them help me out as needed, I am so thankful to have them all in my life. Tom felt good about the trip as well, he was actually instrumental in me going, I tried to get out of going, but he was persistent, and even bought the tickets etc. I am so happy he was, I regained some freedom I thought was lost forever. There is freedom in friendship and in love....

We also celebrated our Copper Anniversary in January. Most of you probably have no idea what a Copper Anniversary is, but to those of you who don't know, Copper Anniversary is a celebration of 12 1/2 years of marriage. When explaining it to people, I usually say that Danes will use any excuse to eat. drink, and be merry. I wasn't expecting anything, nor did I plan anything for the anniversary, but Tom had! He surprised me with a trip to Orlando where we were going to stay in a bed and breakfast, and attend a George Strait/Martina McBride concert. It was a freezing cold night, but we had a wonderful time just spending time together, we don't do that enough. It was a weekend where we sat up against a sand dune, somewhat safe, but with mortars flying all around us.

Shortly after going to the concert I decided to ask for help with my eating disorder, depression, and anxiety. On February 16th I was checked in at an eating disorder clinic at Shands in Gainesville. I spent nearly six weeks there, and got home this past Monday. Being at Shands was both the easiest and the hardest job I have ever had to do. The easiest because I had no choice but to do what I was told, the hardest because I gave up all control and every day I had to do things I did not want to do. I had to eat the food I was served or be given Ensure to drink to make up for it. I had to attend group therapy sessions that were both helpful and painful. I had to spend 14 hours a day in a small room surrounded by people I had not chosen to be around. There are some stories to be told about my experiences at Shands, but they are better told at a different point in time. I left Shands a stronger (and a little bit bigger) person, I learned some skills and acquired some tools that hopefully will help me stay on the right path. I am by no means healthy yet, there is a long way to go, but I am sticking to my meal plan, I have become more assertive, and most of all, I have regained my desire to live.
My desire to live and to have a good life, came about during a tragedy. Yes, tragedy...... My youngest brother, Jesper, passed away from complications with a drain in his head that was supposed to keep water from accumulating on his brain due to hydrocephalus (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002538/). The drain malfunctioned, and the surgery to correct it failed to do so, and the pressure built up, and he finally passed away in his sleep on Monday. It is still very surreal to me to know that he is gone, he was an amazing person, and even though his death seems meaningless, I will not allow it to be. Jesper was a strong person that we all should learn from, life definitely threw its shares of mortars at him, and his entire life he was on Omaha Beach dodging shells and mortars, every so often he would sit with his back against a sand dune, and even though he felt safe, the rest of us always saw the war going on all around him. Jesper never gave up, he was full of life, and happiness, he was a true warrior.

However painful his death is, and trust me, it hurts, I decided that his memory is to important for me, I cannot disappoint him. He showed me the way, and even when wounded he kept crawling until death finally took him away to a better place. I too must keep crawling, my MD will always be here as will my struggles with depression and anxiety, but no one will benefit from me hitting the pause button while waiting for the mortars to come and get me. They will get me no matter what I do, and living is much better than just waiting. All I can do is just to embrace the safety of the occasional sand dune or the comfort of
the cliff.

"I made it to this congregation, and there was quite a bunch of guys there. Now the sand dune has petered out to nothing, but some big cliffs have taken over. It’s the far western end of the beach. Omaha Beach just sort of abruptly ends, and these cliffs come right down to the water. For that little section there, these cliffs were giving quite a bit of safety. And there were hundreds of guys crowded behind it. Some were bandaged, some were wounded, some with their arm in a sling. But they were all dazed, confused. Some didn’t have helmets. Some didn’t have rifles. You couldn’t imagine, these are American soldiers who a few hours ago were full of spirit and energy and here they are so disarrayed and astonished and stunned they didn’t know what the hell they were doing. And in the flat area there were dozens and dozens and dozens of stretchers. It was a pickup aid station. And it seemed like every third guy on a stretcher was one of my buddies, and I said, "Well, that’s why I couldn’t find anybody back there. They’re all down here; they’ve all been wounded." (http://www.tankbooks.com/stories/omaha.htm)

Yesterday I once again managed to burn my hand on boiling water, according to Tom I am done playing with the tea kettle for a while, I think I just need to figure out a different way of pouring water on my tea bags, after all I love tea, and cannot give that up just because I got wounded by a bullet. I will have a new scar to remember it by, and I have to keep moving, I have to remember the stories of Omaha Beach. Stories of courage, resilience, and survival. RIP Jesper until I see you again. Heaven is lucky to have you, and I know you are enjoying the company of farfar and morfar, you might even start to drink flueoel, afterall, they go well with card games and hotdogs.

I love you!

"You who have made me see many troubles and calamities will revive me again; from the depths of the earth you will bring me up again. You will increase my greatness and comfort me again." ~Psalms 71:20-21

Peace

P



Contact email keepinghopejourney@gmail.com

Humble

Merry Christmas,

I think December was out to get me. Seriously, I swear yesterday was December 1st, and now it is Christmas Eve, well it actually turned into the 26th in the meantime. We have been extraordinarily busy this year, so December flew by faster than usual. I am, nonetheless, not intending to sit here and write about how December nipped me in the you know what, and disappeared.

Last Sunday, in church, a guy named Ben Kaempfer, gave the sermon. Ben has been spending the last two months or so living as a homeless person on the streets of Tallahassee. He has recently been a part of starting a new church called Downtown Community Church, where he hopes to minister to the inner city. He said that living as a homeless person taught him the humility he needed to be able to serve in an under served community. Being from a typical middle class background really did not allow him to relate to his congregation the best way possible.

He based his sermon on Philippians 2:1-11 (the headline, Humble, is a hyperlink). The passage speaks about humility, and about how we, as human beings, will never truly understand how humble Jesus really was. He took everything in stride, all the humiliations; he even allowed himself to be crucified for us. Imagine walking around every single day feeling the pain and misery of the entire world, without complaining, but rather you volunteer to take on the pain yourself... wow.

Philippians 2:1-11 is probably one of the most powerful passages I have read so far. It just hits home in so many ways. I am not going to pretend that I have come to terms with my MD. I have not, and it is not very likely that this stupid human brain will any time soon. However, I did have some kind of "aha" moment. I am not sure any person will ever truly know the plans God made for him/her. We are most all too arrogant and blind to do so. However, lately I have been working on a couple of different projects, that I hope are a part of the master plan.

I know that God has a plan for me. I do, however, have to admit that I have been running around screaming lalalalalala while plugging my ears, because our plans appear to be incompatible. One of the things the passage did, was to make me realize that my fight against the use of assistive devices, etc, is futile. The reason for that is that if I want to be successful at my ventures, I will need to accept that assistive devices are not signs of failure, but tools I need to use to reach my goal. Ben Kaempfer spoke about learning about humility while living as a homeless person. I think my lesson is to accept that without the humiliation (I am ONLY speaking for myself here, we all have different views) of admitting that I slowly will have to incorporate a few devices into my life, I will not be able to fulfill God's plans for me here on Earth. I still don't know what the plans are, but they all point in one direction, and every time I humble myself, something else falls into place, or a person I need will step into my life and replace needs I do not know I had.

I understand that I might possibly have insulted some of you by referring to the use of assistive devices as humiliating. No insult intended. It is all a part of my life lesson, and the day I was diagnosed with MD I swore that I was going. to prove that specific neurologist wrong. I became, and to some extent still am, obsessed with that thought and rather than accepting the rational way of looking at assistive devices as tools and not failures, I was unable to look at them as anything but a sign of my failure! To me, proving the neurologist wrong required nothing less than a full recovery. In reality, the fact that I am still as active as I am, and in the process I have begun to take back my independence, are proving him wrong. My wish and prayer is that I will be able to keep my focus pointed in that direction, but it will require hard work, blood, sweat, and tears, and turning insight into reality is not an easy task when your entire being is screaming against it.

I hope you all had a wonderful Christmas!

Peace

P




Contact email keepinghopejourney@gmail.com

Purpose

Recently I was approached by a friend of mine, who asked me if I would be willing to co write a book about healthcare and about how to deal with distracted doctors, emotional well being when diagnosed with a serious illness. It will be about how to deal with family and friends, when learning to live this new life you have been given, but not asked for. These are only a few of the topics we will touch upon. We have two different diagnoses, but yet so many similar experiences with the health care system. I am not sure I will go as far as to say that the health care system is completely broken, it is not, but there is definitely room for improvement both by the doctors, but also by us, the patients. We are hoping to develop a handbook with guidelines for people to use, when finding themselves in a situation where they will not only need to learn to "manage" their doctors, but it will also have a large emphasis on self advocacy. Unfortunately, self advocacy can be the only way to get ahead when dealing with a tough diagnosis, and a lot of people either don't have the resources or the knowledge to stand up for what they are entitled to, and these people, may end up living less than fulfilling lives. Imagine not only are you dealing with a devastating life altering disease or condition, you have no idea where to go for help and guidance. You don't know that you are not alone. Our hope is that this book will help these people navigate the jungle called health care, and even if their lives are far from the ideals they once dreamed about, being your own advocate can help you seek the help and guidance needed to recreate and alter your dreams into a more realistic and fulfilling life.

There are plenty of resources out there to help people with different forms of disabilities, lead satisfying and productive lives, you just need to know where to look.

Please keep following this blog, but also, check out the blog on Rockethub, funding is an issue so if you, or someone you know have a few dollars to spare, please consider supporting our project "Cut off My Arm so You can see Me", someday you might be the one feeling lost, alone, and scared...Check out the Rockethub site at http://www.rockethub.com/projects/4108-cut-off-my-arm-so-you-can-see-me/posts

Peace XO
P

Contact email keepinghopejourney@gmail.com

Cut off My Arm so You Can See Me

Please check out my new project. I hate asking for money, but any small amount will be greatly appreciated. The book is very important to me, but even more to my friend. I will write more later. In the mean time, check out the link.

Peace

P

Labels, definitions, and who we are

People-first language is a form of linguistic prescriptivism in English, aiming to avoid perceived and subconscious dehumanization when discussing people with disabilities, as such forming an aspect of disability etiquette. (http://en.wikipedia.org/wiki/People-first_language)

Today I was faced with a statement, that not only puzzled me, insulted me, but most of all made me shake my head in disbelief. I was told that I was an insult or disgrace to "disabled" people, and that the way I choose to define myself is part of why people with "invisible" disabilities often are looked down on.

I have been experimenting with making different kinds of bead jewelry lately, and I am in the process of setting up a little store on the Internet where I can sell it. In addition to that, I have also sold some stuff just by people asking me where I got the bracelet I was wearing etc, and I would take orders and custom make a new one. I had promised a lady in the pool that I would bring some in for her to see, as she thought she would like to buy one. A person came to me and told me that when marketing the jewelry I should market it as being made by a disabled person, because "disabled" people never get the credit they deserve.

I found the following definition on Wikipedia:

A disability may be physical, cognitive, mental, sensory, emotional, developmental or some combination of these.

Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations.

Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.
—World Health Organization
(http://en.wikipedia.org/wiki/Disabled#Physical_disability)

As I stated above, I was insulted by the statement, and for a brief moment, my brain clearly saw the person that I aim to be, so my response was that I saw absolutely no reason why I should market myself as a disabled person. I told her that for the longest time I have been working on figuring out who I am, and I still have a long way to go. I told her that I define myself as Pernille, a person with many abilities, but also with a physical disability. I have no intent to put the "prefix" disabled in front of my name. She then proceeded to tell me who I am, and that by pretending not to be "disabled", I made everyone else look bad.

She told me that by not defining and "promoting" myself as Ms Disabled Pernille, I was in denial and that by "suppressing" my MD, I made other people's issues seem insignificant, because they all know how tough everything is for me. I told her that no one but me knows what is tough, and what isn't. It is tough to need help; it is tough to watch people do things I would like to do but can't. I grieve over the things I have lost, and probably will lose in the future. I grieve over all the broken dreams, sometimes it is tough to get out of bed in the morning because of those things. It is tough to know that there are people out there who see my disability before they see me. But..... despite all the tough things out there, there are many more things that aren't. Going to the pool and exercising isn't tough, listening to her is. Making jewelry isn't tough, it is relaxing. I told her that I am not hiding my MD, it is very visible, and I am very aware of it, but that I have no need or desire to toot my own horn when I do something that has nothing to do with my disability. However, people, if one day I wake up and notice that I can do things I have not been able to, because of my hard work, I will toot it, and trust me, you will know. I work hard on keeping the disease at bay, but why on earth would I define myself by that, when there are so many other things to life that I can do.

How do you define yourselves? How do you define your friends? Are you putting labels on people because you project what you think they are? Do you refer to your "lesbian" friend, your autistic neighbor or the person in a wheelchair as a disabled person? If you do, I want you to stop and think... A lesbian friend is just a friend who happens to be a lesbian, your autistic neighbor is a person with autism, and the person in the wheelchair is a person with a disability.

Let us all watch how we label and see people. Labels are nothing but the feeding ground for pity, stereotypes, wrong assumptions, unnecessary limitations, I bet you could all keep the list going forever.

All I ask is for people to look beyond what they see or don't see, and consider us all for what we are, namely human beings created with different abilities and disabilities. Let us remember and adopt the People First Language as defined by the American Psychological Association style guide, in the opening quote!

I am Pernille, a human being.

Peace




Contact email keepinghopejourney@gmail.com

Honey Update

I just thought I would share, that I got an email from the city today, in which, they agreed that even though the center I went to last week is ADA compliant, they also deemed it "prudent" to put in more accessible parking spots!

Contact email keepinghopejourney@gmail.com