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

Sometimes you catch an angry wasp!

The most aggressive stinging insects are Vespid wasps which includes yellow jackets. They all aggressively defend their nests (adapted from Wikipedia), and speaking from personal experience... a sting from a yellow jacket can be rather painful, but if you are not allergic and treat it with Benadryl, the pain is brief and quickly turns into a distant but slightly unpleasant memory.

When dealing with a disability, life can be frustrating. Accessibility is not always the way it should be; everything takes longer than it does for everyone else, etc. I consider myself an aggressive, but reasonable, activist when I encounter obstacles that don't need to be there. My philosophy is the old cliche that you 'catch more flies with honey.' I have in the past sent emails to places, where the accessibility just did not make sense, and in kind words explained why. Every time I have been successful in making the suggested changes, at times within 48 hours! Honey is sweet....

However, when catching flies with honey, you need to remember that wasps also have sweet teeth (at least they do in my brain :-), and occasionally you catch and angry wasp near its nest, and get stung.

I was at an event for senior citizens the other day along with my friend Lesa from FDOA. We were supposed to be telling people about a program we offer called RAPAD. The event was held at a neighborhood health/community center in one of the poorer parts of town. I arrived to find that there was only one accessible parking spot, and two spots reserved for staff by the best entrance. The rest were, well, just parking spots that would require anyone with a walking issue to walk on an uneven surface for long distances. The closest parking spot was very far away, and there was no way i could have safely walked the distance to the entrance. I finally found a second Handicap parking spot, all the way at the end of the building. There was no signage telling people how to get into the health center, but there was a long ramp leading up a hill. I had a hard time imagining that you would have to walk that far up hill to enter the building. Physically I felt strong that day, and walked really well so walking the distance was not a major issue, and once I had tested all the entrances I could see, I decided that the ramp running all the way along the building was the way in. The slope was OK, and there were railings most of the way. But while walking up the hill I got increasingly annoyed. It did not make sense to me that there was a parking lot that would allow for direct access to the building for people with disabilities, but two of the three good spots were reserved for the staff. The honey was seeping out of me in a hurry.

During the event, I did build up a new supply. So when the director of the center came to thank us for being there, I mustered up my honey, and asked her kindly if she was aware that the setup was not really conducive for a place catering to senior citizens, and people with disabilities. That was when the wasp caught me, this specific kind of wasp stings with it's eyes, words, and legalistic attitude. The look I got was ice cold, and she very pointedly said "IT IS A.D.A. COMPLIANT. WHEN WE REMODELED, THE CONTRACTOR SAID IT WAS A.D.A. COMPLIANT. IT IS A.D.A. COMPLIANT, THAT IS ALL I HAVE TO SAY". In Danish we have an expression saying "at finde en grimasse der kan passe". It basically means to seek the right expression when someone catches you completely off guard with a completely unexpected answer to a question. I am not sure what I looked like, but I have a feeling that my jaw was hitting my chest and I might even have drooled...

After that incident, I just couldn't help but wonder what would cause a person, working for the city, in a position where she is supposed to make sure people get what they need etc, to become so angry, and lethargic. What would cause this person to put in one truly accessible spot, and then reserve the second best for herself, and leave the rest of us hanging at the bottom of a hill. I was surprised at her anger, especially when the question was asked with honey and not arsenic. There is an incredibly easy solution to the problem, but I think that when dealing with this kind of legalistic people, even a whack upside the head with a baseball bat would make no difference.

Normally, when I experience places that easily could be accessible but are not, I believe it is not done with malicious intent, but rather just ignorance. I have now learned that there is an added, and not nearly as easily dealt with, component namely legalism. Yeah, she did what was required of her by the law, but she forgot to use common sense in the process, and unfortunately you can't make laws against people lacking empathy and common sense. You can't legislate common sense...

I sent a friendly email to the director of the specific department in the city of Tallahassee, and within 24 hours I had a very nice answer that it would be looked into, and he would get back to me.

I look forward to hearing from him, I hear he is a nice guy, so maybe the parking spots will be switched around to make more sense, and not just comply with A.D.A. standards, and maybe he will be able to take the sting out of the wasp.

I will continue to use honey in my "traps" in the future, but now I know that sometimes you may place the honey too close to the nest of an angry wasp.

My challenge for you for the week is to look around and imagine you are the one with a disability. Which unnecessary obstacles do you experience, and could they be eliminated or made smaller without much effort. You might just be surprised...


Love and Honey,

P

Contact email keepinghopejourney@gmail.com

Did I Forget?

I know I have neglected my blog for a long time. The truth is that I thought I had lost my ability to write, that I no longer had anything to say that people wanted to read. Every time I wanted to write a new entry, nothing seemed to come to mind. In the past I have often been able to just let my fingers do the walking. I would just type, and something worthwhile would come out after intense editing. I have had a lot of experiences recently, both spiritually, but I have also made some amazing friends with MD, through a foundation called "Speak Foundation." Right now Richie Sambora is playing an acoustic version of "Living on a Prayer" on the MDA Telethon. That song is so very appropriate, not only for me, but I think for a lot of people. We have to live on hope and prayers. About a month ago we went to a conference in Atlanta arranged by "Speak Foundation." The foundation was founded by an amazing young lady called Kathryn Bryant. The fact that she works full time, fights the same kind of MD as I have, and runs the foundation and manages to raise money and resources enough to make attending the conference free, is, to me, an amazing feat. Thank you Kat; you are amazing.

I had mixed emotions about going to the conference. I am not going to lie and say that I wasn't scared, I was. Until then, I had really only met three other people with MD, Kathryn being one of them. Kathryn has the same kind of MD as I have, making her even more inspirational. I was scared to see people better off than me, but terrified about the ones, whose disease has progressed beyond mine. I was afraid to see my future. I still am, but I think we all are. I met some amazing people, who all have managed to make their lives productive, despite their disabilities. None of them actually appeared disabled to me, I was the disabled one! There were some great panels of experts etc, but the best part of the entire conference, was to hang out. It was an incredible feeling to be able to sit with a bunch of girls and talk about life, about all of the similar experiences we have, as well as sharing tricks of the trade. But we were also just "girls" having a good time. I am still proudly wearing my feathers. The conference was also good for Tom; I think that finally meeting other spouses made him feel a little less lonely. I am not sure what the spouses talked about, and I don't think I will ever know, but I know that he made some connections that will last a long time if not forever. I know that God wanted me there, the week right before the conference I was so terrified that, had we not promised a friend that we would bring her, we would not have gone. I was wanted and needed there, and by having made a promise, I could not put myself and my fears first.. I am eternally thankful for that. A month later, I am still processing the weekend, and I will for a long time yet to come. I am slowly getting back my oomph and my strength to fight as I slowly begin to see that no matter what my MD brings, it is possible to have a good life, it is possible to be happy, it is possible to do things, I just need to redirect my focus even when the little voice inside of me tries to talk me out of it and tells me that it doesn't matter anyway. It matters, I have something to strive for now, I have role models to live up to. Right now I am making the promise to find a way to raise money for the Speak Foundation here in Tallahassee.

In addition to meeting other "older" girls with MD, I also met some amazingly inspirational teenage girls and their mothers. All I have to say is WOW; your strength, passion, and love touched me in ways you cannot imagine.
Thank you, I miss you, and can't wait to see you all again next year. Hopefully I will see some of you in my driveway :-), Kevin and Kim, when Kim and I get to go shopping at the Ellenton Outlets or IKEA, and Kathryn as soon as I can make it to Columbus again, or you can come to Tallahassee.

Just remember:

You'll Never Walk Alone,

P

I have attached some links below to three songs referenced in the blog, all three songs touch me.

Here is the original version of You Will Never Walk alone, made famous by Jerry Lewis' interpretations throughout the years at the MDA Telethons:




Let your Fingers do the Walking is a song by a Danish Band, Sort Sol. One of my favorite songs...



And finally of course.....




Contact email keepinghopejourney@gmail.com

Dual Patriotism Part II

Today, it is exactly one year ago that I wrote my Dual Patriotism post, probably one of the best posts on my blog in my humble opinion. Not much has changed in regards to my opinion of dual patriotism, I still think that it is possible to love two countries equally! However, the biggest difference between last year and this year, is that I am now nearly 100% sure that I am going to apply for American Citizenship. Changing my citizenship will not really change much other than the color of my passport, and my the right to vote (some of you may not think that is a good thing :-). Next year is a presidential election year, and I would love to have my voice heard. In addition, my Danish passport expires next June, and I will also need to get my green card renewed at some point next year. In reality that is a lot more work than applying for and getting American citizenship, and I would no longer have to deal with those issues (even though they are nothing but minor nuisances). I think it would be really neat if I could be sworn in on the fourth of July in the ceremony they hold in Tallahassee, and probably pretty much everywhere else.

Would I be a proud American? Absolutely, it has been a long journey for me, but I now know that I am "home". I love Tallahassee, I have the greatest friends anyone could ask for, a beautiful house, an awesome medical team, and a great new church family, oh and a pretty darn awesome husband. The term church family has always struck me as being kind of weird, but there really is no better way of describing it. The people at CenterPoint are more than just people going to our church, they are more than friends, they are family! I don't intend on sounding as if God all of a sudden struck me with this realization, as that would be a lie. It has been a long and painful process, and I am sure it will continue that way. God has slowly, nudged me in the right direction for years, and I have slowly followed, without even realizing it. Sometimes I have been kicking and screaming, and sometimes I have peacefully followed without even knowing where I was going.

The above mentioned issues are basically personal issues, and do not really provide the answer as to whether or not I would be a good American. But I still know that I will. America has some of the most beautiful people in the world, sure it has it's fair share of "ugly" people, as does every nation, there is just something about the "pioneer" spirit that still permeates the people even up to today! I hope the spirit will rub off on me, as I think that spirit would be what it would take for me to completely come to terms with my disease, the never give up attitude, the attitude that if you hit a brick wall you either find a way around it, or climb over it. Lately I have lacked a lot in that department. Every time I have hit a wall, all I have done is get mad, and sit down by the wall, waiting for someone to come and bring me either around it or over it. And, every time someone has come along, and given me what I needed to scale the obstacle, but I have just never been satisfied with what they offered. My brain is very black and white, and for some irrational reason, it thinks that it is only worth it to scale the wall if it will offer me a life without MD on the other side. Otherwise why would I scale it?

On a day like today, while doing something I love, namely writing, I know that the MD really is not the issue, I am the issue. My priorities are completely warped. I am incapable of seeing my value, I only see the non-valuable things, such as the things the MD has done to my body, and will keep doing. My brain seems to think that it does not matter that I am an awesome teacher, writer, friend, wife etc as long as I have MD. Being an awesome teacher, writer, friend, or wife, does not require MD, most people are perfectly capable of being a lot of those things without being disabled, and that is where I lose sight of my value.

I owe a lot of people thanks and apologies as I know I am not always easy to be around! I apologize to the people, who truly know me, for being as stubborn as I am, do I fight you because I don't want to listen, or do I fight because I don't want to know what is on the other side of the wall, I don't know, but I am so grateful that you are not giving up on me, that you see something in me I fail to see. I owe thanks to more people than I can even mention here, but I think a lot of you may know who I am talking about. I want to thank you for being willing to learn how to help me out, to include me in "girl" only events. It took me a while to realize I am not being invited out of pity, but because you want me there. You don't care that I am disabled, you all see me as Pernille.

One of my favorite statements when I give compliments to people is "Take it and run with it, you never know when I will throw another one at you". You don't need to run anywhere with it right now, as this is a permanent thank you! A thank you for just allowing me to be me without being nervous, a thank you for not being afraid to ask me how you can help me, and a HUGE thank you for making me feel comfortable enough to accept your offers, and letting you help me!

Have a Happy Fourth of July, all you beautiful people out there! You are not only celebrating America's birthday, you are also celebrating, the spirit that made America, and is still very much alive in you all.

P

Contact email keepinghopejourney@gmail.com

Firsts.

It is actually past my bedtime, but something is keeping me up even though I have had a very busy day. There is always a first for everything, and I feel lucky to have lived here for as long as I have before this first decided to come around. This morning my 95 year old grandfather passed away. It is the first time since I got married and moved to America that someone close to me has died back home.

Farfar was, as I mentioned 95 years old, he and my grandmother would have celebrated their 66th wedding anniversary next month. Imagine that, 66 years, it is 30 years longer than I have been on this earth. We have known it was coming for a while now, and I think everybody were as ready as they could be, but it still isn't nice when someone you love passes away.

I was briefly wondering what was keeping me from going to bed, but it is obviously because I have not yet allowed myself to start my grief, I have not shed a tear, and it has all seemed unreal. When I came home from a long day at work, all I wanted was some retail therapy, and I went shopping. Did you know that retail therapy is much like peeing in your pants when it is freezing outside? At first it warms you up and makes you feel really good, but once you start cooling down it is not nearly as much fun. Ok that was off topic but I just had to throw it in....Shopping helped me keep everything at a distance, but now, home on the couch, I am beginning to understand what has happened. It is a bittersweet day, the world lost the only person I have ever met, who might be even more stubborn than I am, it lost a person who has seen more than most of us ever will, just think about the differences between 1915 and now. I don't think the world will ever again experience that kind of development in a person's lifetime. The sweet part is that farfar now has the peace he deserved, and for the past month he yearned for it. I don't know how strong he was in his faith, but I do believe that he had a personal relationship with Christ even though he rarely let it on. I am pretty sure I will see him again when my time comes.


Farfar wasn't always the warm teddy bear you expect a grandfather to be, but you never doubted that he loved you. Much like me his two strongest but at times also weakest personality traits were his stubbornness, and his lack of patience. Right now I can imagine him impatiently sitting at the table next to Jesus waiting for his nightcap, consisting of an open faced cheese sandwich, which cheese bought down at the market, half a beer, preferably the cheap one with the picture of the fly on it, and a shot of snaps (Akvavit). It was his bedtime routine, and if it is not offered in Heaven right now, I am sure it will be soon, if for no other reason, because Christ either has become tired of listening to him, or Jesus himself has taken up the practice :-)

I found a quote in 2 Timothy 4:7, that explains how I feel about his death even though it is written if first person rather than third. "I have fought the good fight, I finished the course, I have kept the faith "

Rest in Peace farfar, you will be missed.

Peace!

P

Contact email keepinghopejourney@gmail.com

Snake Oil

Well, the rapture has not yet happened, or at least it hasn't happened to my knowledge. Harold Camping is fascinating to me. I can't decide whether the guy is a babbling idiot, or a genius. Either way, the guy has managed to stir up reactions in many people, including me, as I am writing about him. Good job Mr Camping! While sitting on the couch nursing a cold that has taken up residence somewhere between my chest and my sinuses, I couldn't help but look up his name on the Internet, just to try to figure out who this guy is. The cool thing is that on my nook I can google stuff, and cross reference in the Bible with the click of a button (or in this case, the touch of a screen), pretty cool!. Whether or not the world is going to end today, is really of no importance to me. I can't do anything about it either way. And I am not smart enough to draw the same conclusions as Mr Camping has. I bumped into a couple of unique websites, both catering to the "so called" saved part of the population.

Http://eternal-earthbound-pets.com/ is a website, created by atheists, claiming that they will take care of your pets after the rapture. It is very comforting to know that for a total of $145, James and Clifford will be well taken care of for the rest of their natural life, or for the next 10 years. That is a bargain, James and Clifford are both worth a lot more than that in my book! I really only have a few issues with this business.

1. Florida is not one of the states covered by the offer.

2. I do not know for sure that I am one of the people to get "beamed up". I mean I am fairly new to Christianity, and God may not think that I have it all right in his book quite yet. I hope I do but in case I don't I will be here with my furry friends.

3. There is no guarantee that the atheist who is going to take care of my pets will survive the earthquakes and all the other disasters. The better option in my opinion would be to spend the money on a lot of cat food, dog food, and water, and leave it out just in case. I mean, if the rapture does not happen, I will just have pet food for a while. It is kind of like a hurricane survival kit. During hurricane Charley we had everything we needed to make it for the prescribed amount of time. When it turned out that Charley did not hit us directly, I decided to conduct a little experiment, and see how long it would be possible for me to live off of Vienna Sausages, canned tuna, beef jerky and peanuts without going crazy. I made it about three weeks, I probably could have made it longer had I not run out of peanuts, thus eliminating the biggest (actually the only) source of fiber in my diet. They do not tell you to add a laxative to your survival kit, only Immodium. Common sense dictates that if your sink is plugged you don't add more gunk to it, you add liquid plumber. I did have a lot of water left over, and since we lived in a small apartment at the time I donated it to the people that were truly affected and did not have access to drinking water. A win win situation in my book.

4. Tom has assured me that cats and dogs go to Heaven, and if that is true, why would I need someone to watch them here? Hopefully Tom and I will both be in Heaven with them, but if only one of us is, the other might just become mighty tired of eating cat and dog food after a while.

According to ABC News, the company has sold 258 contracts so far. That is a pretty good penny for doing virtually (no pun intended) nothing.

http://www.postrapturepost.com/order.html is a different website, also created by atheists, promising to deliver letters to your non-saved loved ones after the rapture. That is a pretty good idea, but really????? I think we would all just be much better off telling people what they mean to us and that we love them while we are still here on Earth. One possible advantage to the offer is that you could leave directions for your loved ones on how to take care of your pets in the odd event they don't go to heaven with you. It is a lot cheaper than Eternal Earth-Bound Pets, but I would probably just leave instructions out on the counter with all the extra cat and dog food....

I have a theory. Harold Camping, rather than being a false prophet or a heretic, is really nothing but a brilliant snake oil salesman. Yeah you read me right, to me, the guy is nothing but that. Commerce and marketing have changed quite a bit since the pioneering days, and whereas most of us seem to think that we see Camping for what he is, he might just have outsmarted us all. If you take a look at the two mentioned websites, as well as http://www.bmius.org/ you will see that all three accept payments or donations through PayPal. I tested all three sites, and without spending any money (I do still need to buy pet food!), all three appear to work just fine. I wonder what would happen if we took at peek at Mr Camping's different sources of income???? I mean he would not be the first, nor the last person to play both sides would he?....

I love you all (just in case) and yes, I do still eat peanuts, but I can honestly say that I have not craved Vienna Sausages or Beef Jerky since October of 2004!

Peace!

P

Contact email keepinghopejourney@gmail.com

Empty and Full

Right now Jesus, or in this case, a much younger Max Von Sydov, it entering Jerusalem. I have never actually seen the movie The Greatest Story Ever Told, but appropriately enough it is being shown on TV right now. We picked it up right when Jesus entered Jerusalem on the donkey. This morning, at church, I once again started thinking, I am not quite sure about this whole thinking thing, deep thoughts seem to lead to yet deeper thoughts and so on. Todd, who preached this morning, based his sermon on the word empty, and the importance of the word empty in the Christian faith. Without the empty tomb, there would be no Christianity as Christ would have been a mere human, and not who he claimed he was. It is really all very interesting, as it is because of the empty tomb, that I now feel very full.

I am full at several different levels, my stomach is definitely full I can, however, not pin that one on Christ, I take complete responsibility for overeating. But, my brain is also full. I have learned so much over the past several months, and I have met so many new and inspiring people, and there are times when I really struggle with putting it all together. I feel very divided, I feel and see how Christ works in people, and I see how he has placed a lot of things right there for me to grab so that I too will be able to feel him, and understand his unconditional love for me. But as I mentioned, I do feel very divided, the best way of describing it is probably the feeling of being two different people at the same time. There is a part of me, that really really really wants to accept that there is a reason why I have MD, but also that I may never know that reason. The part knows that God did not give me this out of malicious intent, but because there is a purpose for me to fulfill. This part is also a very rational being, understanding, that to achieve the best possible quality of life, I must choose a different battleground, the battleground Christ chose for me. However, the other part, the irrational and unfortunately also dominating part of me, has no intention of switching battlegrounds, it only has one goal, namely for the MD to go away at any cost, nothing more, nothing less, and it intends on fighting that fight forever. The fight, as it is now, can only have one outcome, and it is not a favorable one neither for the rational me nor for the irrational me. But yet I cannot let go. I pray daily, that Christ will help me, that he will show me how, and where he wants me to go. It is really stupid as he has already shown me, but unfortunately, the irrational part, is just acting like a spoiled two year old holding her ears while screaming loudly and pretending not to hear, while also drowning out the voice making it impossible for the rational me to follow directions.

Why do I have such a hard time accepting the hand I was dealt? Why does my brain refuse to listen to the messages that are so clearly communicated to me? Christ, has given me so much, and he keeps giving, but yet I am not satisfied, as the things that matter most to me are things I can't have, while I don't use and appreciate the gifts I have been given. Is this where free will comes into play? I can choose to take the path lined up for me by Christ, a difficult path, as MD is no walk in the park with or without Christ, but a path where I none the less use the gifts I have been given, and have the comfort of knowing that Christ is right there beside me?, or I can choose to take the path I am currently taking, where I am creating additional obstacles to the already difficult walk in the park.

The movie is over, Jesus rose from the dead, he kept his promise, he did it for me and for all of you, I cannot even begin to imagine what he went through, and here I am, sitting comfortably on my couch, with a loving husband, a whining dog (he thinks that whining gets him treats, not sure where he learned that???), a sleeping cat, and a very full belly, and think that it is OK for me to complain. What is wrong with that picture? Why does the irrational me keep knocking down the rational me?

I hope you all had a wonderful Easter, I did, I was lucky enough to attend a beautiful outdoors service this morning, the rest of the day was spent in the great company of new and old friends, and the Easter Bunny even remembered me this year, what else can a girl ask for?

P

Contact email keepinghopejourney@gmail.com

Goals

According to Wikipedia, one definition of the word "Goal" is "A goal or objective is a desired result a person or a system envisions, plans and commits to achieve—a personal or organizational desired end-point in some sort of assumed development. Many people endeavor to reach goals within a finite time by setting deadlines.

We all set different goals in life, some people use the words goals and dreams in the same context, or even as symonyms, and for some that may very well be a good thing. "My dream is to become a famous soccer player, and my goal is to do it by the time I turn 20". See if you are a reasonably coordinated, able bodied, athletic person, the combination of "dream and goal" may not be a bad idea at all. Goals and dreams have to be realistic. The reality of life is probably that most of us at some point have had to alter our goals, dreams, or both.

This weekend was the annual Sportsability event for Florida Disabled Outdoors Association. (check out fdoa.org for more info). Sportsability is an awesome event, that offers people with all kinds of disabilities the opportunity to try things they never dreamed of trying before. It allows for people, who may not otherwise get out a lot, to come out and enjoy nature, and to socialize. The reason why I am writing about goals and dreams is that there are infinitely many types of disabilities, some physical, some mental, some progressive, some stationary, and some that affect only one body part while the rest of the body is not affected. These different disabilities all require different goals.

I met an extremely inspirational person this weekend. She was the key note speaker at the opening banquet Thursday night, as well as at an exhibit Friday. I had the chance not only to enjoy her presentation in which she told us all how she had overcome her disability to become an Ironman (no, not the cartoon character, but a Triathlete), but I also had the opportunity to speak to her for a little while both Thursday and Friday, what an incredible person!. Her disability is, that at age 6 or 7 she had her left leg amputated. The challenges she is facing every single day are tremendous, and yet she gets up with her head held high, sets goals, and reaches them somehow or another. It took her years to train for her ironman as she did not know how to ride a bike, or how to swim, she had to learn both, and managed to do so. She did not finish the ironman in her first attempt as she ran out of time, but on her second attempt she was successful. What a relentless fighter!

I couldn't help but think about the similarities and differences between the two of us. In many ways we are very similar, I have a feeling that we both have a slight hint of stubbornness, none of us like being told that we can't do something, and we are very close to each other in age. However, the differences are what really made me think. Despite missing a leg, the rest of her body does not have any challenges, so once she solved the swimming/biking issue, it turned into a question of training, a lot of training I am sure. However, she was able to set a goal, have a dream, and achieve both. When you suffer from a progressive degenerative disease, your goal setting is totally different, and to be honest, dreams are something of the past, all that ever happens is that they shatter! Goal setting for people with MD or other progressive diseases, often become goals of just making it through the day, the week, the month, the year without a complete loss of mobility, independence, and (this may sound harsh but to me it feels very real) human dignity. Those goals aren't goals, they are the harsh reality, when I go to bed every night, I fear that the next morning may be the morning where I can no longer do _____ (fill in the blank). I know we could all be hit by a truck tomorrow and become disabled, or even die, and I have been told that the fear I feel every night (and day) is a fear I should let go of. But, I am pretty certain I have mentioned something similar to this before, but most people have a fairly reasonable chance of not being hit by the infamous truck, and thus they are able to go about their day and set their goals and follow their dreams.

When being diagnosed with a disease, such as MD, you have to learn to reevaluate your goals and to recreate dreams, but it is hard, because we always want what we can't have. My only dream and goal in life is to beat MD, it is actually an all or nothing proposition, and I will more than likely never be able to achieve neither the goal nor the dream. Creating new goals and dreams is a lot harder than you might imagine, especially because the grass is always greener on the other side. I have always enjoyed helping people, and I have been encouraged to follow that dream, but I tend to put myself down, simply because there will always be an able bodied person out there I will not be able to compete with simply because 60% (or more) of his/her time is not spent on just "being". By being I mean that it is not spent on taking forever to walk from a parking lot into a store, or putting on shoes, it takes me upwards of five minutes if Tom is not around! (I like flip flops by the way), I think you all get the picture here. Setting goals and creating dreams is just incredibly hard when most of your time is already accounted for, and most of the rest (at least that is the case with me) is spent on worrying about what's next!

I am in the process of working on getting rid of my all or nothing mentality, but I am not very good at it, it may be the hint of stubbornness mixed with some strange idea I have in my head that in order for me to set and reach goals, and to follow dreams I will have to be able bodied. I don't know. Either way, goal setting is different for all of us, and if I were to only set realistic goals I might as well curl up into a little ball and roll over in a corner.

Giving my life over to Christ is probably the only answer, and I do try, but I think my human side (or my flesh as the Apostle Paul, and Todd so eloquently express it), is very powerful. My desire to beat MD has basically become a form of idolatry that should be fought. But tonight in church, Todd said that fighting it is really not the most important issue as once you really give up your life, the fight will no longer be necessary.

This should console me, but it doesn't always, as giving my life completely to the will of God, would bind me to accept and embrace the life I have been given, and that, my dear friends, can at times be harder than you might think.

P

Contact email keepinghopejourney@gmail.com

Et vink med en vognstang

Et vink med en vognstang is a Danish saying I struggle a little with translating, I put it in google translate and it came out as "a hint of a pole", not exactly what I was looking for. I will do my best to explain what the saying means, and why I have chosen to title this entry "Et vink med en vognstang". Loosely translated, you can consider et vink med en vognstang a combination of "not seeing the woods for trees and being oblivious to something that is clearly pointed out to you".

In my last post I wrote about the loss of our very good friend, Mike. There was never any doubt in our minds that we had to go down to Boca Raton for the memorial service. Mike passed away Thursday, and the details of the memorial service were not made public until Friday. If the geography of Florida is not your strong suit, I can tell you that the distance from our house to the funeral home is about 420 miles. We called a friend of ours to ask if we could stay with her while down there, which was no problem. Later that same day, we found out that she lives on the third floor without an elevator. I don't think I need to explain the issues with that. However, going to Mike's memorial service was bigger than me, or us, and Tom and I agreed that we could make it happen. Tom could help me up three flights of stairs. Saturday morning while on our merry (or somber) way towards South Florida, I start getting anxious and stressed about the stairs. I got some coupon books at a rest area near Orlando and started looking for cheap hotels. The price for a night in a dump in Palm Beach County is about the price of a four star hotel in Tallahassee. We had not budgeted for a hotel, and my stress levels increased more and more. Suddenly the stairs were bigger than Mike, and I lost sight of what was important this weekend.

We knew that some of our friends from Tally were going to be in the Palm Beach area this past weekend, and when they found out that we would be going south as well, we agreed that if there was time we should meet up, nothing was agreed upon due to all the short notice. While I was stressing more and more about making it up three flights of stairs, or getting a hotel room we could not afford, I got a text message from our friend, asking us to join them at the party they were at. We decided that might not be a bad idea as we otherwise would have just sat in an empty one bedroom condo feeling miserable while eating Little Caesar's pizza. I said we would come by, and also asked if he would mind looking up cheap hotels on his iphone, so we could find a place to stay. At that point the stairs were completely out of the question, I just could not even imagine making an attempt. The response back was, that they could accommodate us. We went to the party, which was great, free food, lots of alcohol, and friendly people, a way of getting our minds off of Sunday. We got to stay at my friend's daughter's one story house! Our problems were taken care of when we needed them taken care of the most.

The memorial service on Sunday afternoon was beautiful, Mike was celebrated as the amazing person he was. The service also gave me reason and opportunity to reflect on my life. Mike was the person who "outed" me last year when I started writing my blog. He was always so open and honest about his fight, and his feelings etc. He inspired me to open up to the world about my struggle with MD etc


I am apparently a little dense, as it took until late this afternoon before I realized that God gave me a "vink med en vognstang" this weekend, that he played a huge part in making what could have been a disaster into what it should be, namely remembering Mike. He taught me to redirect my focus towards what is really important. When I started to loose focus on our way down, I got the text message, solving all of our problems at once, when we "socialized" after the memorial service, I was able to have a regular conversation with people without being embarrassed or nervous, I was just a person speaking to old friends, not an anxious person trying to pretend that everything was ok.

I am so incredibly sad that Mike had to die, but God made it that way, but that is not all, God also used Mike's life and death as a teachable moment for me. Mike was God's tool to help me start to recover from my turtleitis, he used Mike to show me what it means to fight, and last but not least, he used this weekend, to "smack me upside the head with a pole". He helped me get into the "right" mindset, that this was about honoring Mike's life, and not about me and three flights of stairs. However, when my confidence and focus started wavering, he did take my hand and sent the help I needed in the form of a text message.

P

Contact email keepinghopejourney@gmail.com

Sushi and Memories

Dear Mike,

It is with a very heavy heart that I write this blog entry. Today the world lost an amazing guy, a wife lost her husband, and a little boy lost his father.

When I initially started this blog, I wrote about you, how you were fighting brain cancer. I wrote about the inspiration you offered to me, and to the world. Yow were so open about your fight and your determination to dance at, Cole's, wedding. Mike, you will not be dancing at Cole's wedding, well, at least we will not see you dance but I am, however, convinced that wherever you are going, you will be dancing with tears of joy in your eyes. I know you will be proud of him, Kim will take good care of him.

You and Kim, were our first friends when we moved to Naples in 2002, the first time we met, we went out for pizza in North Naples, I had ham and shrimp on my pizza, I remember it clearly because ham and shrimp pizzas were not abundant in Omaha at the time. After our initial pizza date we went on many more dates. There is one date I remember particularly well, Kim was pregnant with Cole, so it must have been about seven years ago. We went to a little family run sushi place somewhere in the northern part of Bonita Springs. I am not sure if we got there late, or if we just stayed for a very long time, but all of a sudden all the people working in the restaurant got out a karaoke machine and started singing karaoke in Japanese. They encouraged us to sing along, but since our Japanese was kind of rusty, we were content with listening, we had a great time. It was probably one of those moments, where people should have been there to really get the humor, it was definitely more entertaining than enjoyable.

Mike, you did something I really struggle with, you walked the walk. What I mean is that life really threw some curve balls at you, but they just bounced off of you and you kept on fighting. I am sure you and Kim had some really tough moments, and I don't think you will ever be prepared for someone as young as you to pass away. But none the less, I am sure you did it with dignity and love as you did everything else in life.

Mike, you were the perfect picture oflife, you hungered for it, and your entrepreneurial spirit made you get out there day after day working to create the best life possible for Kim and Cole. Kim and Cole were always number one in your life, very rarely do you see such dedication and love, it just radiated from all of you.

Mike, as you know, I am new to this whole God thing, but I will be praying for Kim, Cole, and the rest of your family, well for the whole world. I cry because of the loss I personally feel, Mike, you were instrumental in me starting my blog, and letting people know about my MD, I will be forever grateful to you for that!

Psalm 119:28 (NASV) is the closest I can come to telling you how I feel " My soul weeps because of grief; Strengthen me according to Your word."

Mike, the world has lost an amazing person, but Heaven has gained a new resident. Please wait for us, watch over us, and welcome us when we see you again, I am always game for sushi and ham and shrimp pizza.

God Bless you all!

P

Contact email keepinghopejourney@gmail.com

Stuck

I am sure that at some point in our lives, we all experience feelings of being stuck, or captured in a place we really don't want to be. I am stuck in that place right now, and finding a way out is easier said than done. Right now I am tired of fighting, just plain tired. It is hard to keep up hope, when there is very little to hope for. Sometimes I feel as if all the work I do to keep the MD from progressing to much before the cure or treatment is found, is all in vain. I know that I cannot say that it is in vain, we don't know that a cure won't be found tomorrow, but I do know that right now that does not appear to be the case. A lot of research is being done to find cures and treatments for MD, but the truth is that I no longer see a realistic chance of a cure or treatment before it is to late for me. I am not an expert, but I have heard from several sources that even if a cure is found, it will take 5 - 10 years before it will be accessible. 5-10 years is a long time, especially when you don't have a starting point.

I still keep fighting, as I do have a lot to fight for, I am, in many ways a very lucky person, I have a husband and family that loves me, great friends, a nice house, and probably the best dog in the world. There are people out there, who would kill for what I have, so I probably should be more thankful. I am not, MD, even when you have people to talk to, is a very lonely disease. You are the only one who knows what is going on with your body, and no matter how hard or often I try to share my fears with people, I don't think that anyone will ever truly understand.

We all deal with our disabilities in different ways, some better than other. I have found that faith to some extent is a common factor amongst the people who seem to have come to terms with their disease. My search has brought me a long way, and at times I feel peace when praying, but somehow, my brain is still playing tricks on me. I have a hard time getting rid of the "human" approach to God and Jesus. I tend to project human attributes on to God, and make him less than he really is. The concept of omniscience, and that God can do anything he wants still hasn't quite made it through that hard scull of mine. It is also hard for me to understand that God is not punishing me, but has a plan for me, I hate not having any control over where I go. Ok ok ok no body has any control, I know, and I should not feel special, so I will try not to. However, we all have choices to make in life, and those choices give us some kind of control. What I hate is that at times I feel as if I have been robbed of my choices, and thereby also any kind of control. I know it is nonsense, I have a lot of choices to make, but I don't have the choices I want, I really miss my independence, my ability to just do whatever I want without depending on other people.

I am perfectly aware that I can complain about my lost independence from now on and until the end of the world. I also know that I do have some choices and possibilities, that could give me back some of my independence, but for some odd and irrational reason, my brain wants it all or nothing, compromise is not an option.

I suppose that all I can do, is to mosey on while I hang on to the little ray of hope I need to have in my heart, no matter how faint it is.

Peace Out

P
Contact email keepinghopejourney@gmail.com

Inspiration

Lately I seem to have lacked a little in the inspirational department, it is not for lack of being around intelligent and inspirational people, but rather because we have been really busy since we got back from Denmark. We have literally not had a day to just sit down and breathe until today. I did write a long blog last week, only to delete it again because I got mad at God!!! I felt inspired that day, and the blog dealt with how, when I look back, I can see that God has played an active part in my life for years, and how I just kept ignoring all the signs he sent me.

A friend of mine wrote a blog on signs earlier today and I determined that I should try to recreate at least the spirit of last week's blog, who knows, maybe her blog from today was a sign for me to get going.....

Tom and I have, as I have mentioned before been attending church at a church called Centerpoint for the past few months. I think that Centerpoint is the ultimate example of how my human free will, and the will of God can get into wrestling matches only to always have God's will come out ahead. It is called Irresistible Grace I understand that now. When we are at Centerpoint I just feel at home, it is a feeling that is hard to express, it is nothing big and major that makes me want to jump for joy, but rather a deep warm feeling of belonging and contentment. I know God's presence is the reason for that feeling, but I think that he is using the other members to show me how he can be present in human beings. Who knows? I can only hope that one day I will find what they have, and maybe people will be able to sense God's presence in me.

Let me return to the so called signs God has been throwing at me. I am pretty sure God's purpose for me is to be here in Tallahassee, I probably chose the path myself, believing it would lead one way only to end up somewhere totally unexpected. I think of the life Gos has planned for us like a maze with a short route, a medium route, and a long and winding road all of which lead to the center, the place God wants you to be. God is not mean, nor does he play tricks, but he did provide us with free will and through our choices in life, we end up taking one of the previously mentioned roads. Most of us are probably taking the long and winding road, and at times I believe it is probably the most scenic route.

Has my road been scenic? I am not sure, it has most definitely been colorful, but at times also scenic. I hate my MD and what it does to me, and I don't think that will ever change, I will go down fighting. Unfortunately I think that stubbornness could be causing me to take the ugly detour at times. I don't knowingly choose the ugly detour, and I am sure I could have avoided some of them had I just learned the lessons I should have learned from them.

At church today, the sermon was based on ACTs 17:23, the preacher spoke about how we all search for something, and that we are restless. He said that as long as we are restless it will be hard for us to completely live the life we are meant to live as Christians. He said that what we need to do is to let Christ be in charge, and by doing that we will get rid of the restlessness. I am definitely still restless, and keep searching for answers in all the wrong places.

My point with this blog is that I now understand the concept of predestination and irresistible grace. A seed was planted somewhere in me years and years ago, I kept throwing Round Up at it, but the pesky little thing would not go away, quite the opposite. God kept feeding it Miracle Grow and finally, it ended up taking over, to a point where I could no longer ignore the existence of God in my life. I still don't know what the implications will be, I guess only time will tell. So far I am only a rookie blindly trying to find my way to first base. I can do nothing to deserve God's Grace and I should feel comfort in that, I want to feel comfort in it. But it is just so hard for me to understand and accept that no matter what I do, my MD will only be better or go away if He wishes for it to go away, you don't strike bargains with God. I also know that I have so much more I can offer besides trying to fight the MD, but for some reason I don't care that I am a good teacher, cook, wife, as long as I am not healthy. I am sorry I can't do better.


P


Contact email keepinghopejourney@gmail.com

Tea Olive

Wow, it is already February 23rd, this months has gone by very fast, and I cannot believe that it has been 25 days since my last update. We got back from Denmark two days ago after a really nice trip, well apart from the weather that is, there is a reason why I live in Florida. We spent most of the week with family, friends, and shopping. I finally got the meet the two little additions to the family, Clara and Julius. Clara was ten months old Yesterday, and Julius is 10 months old today, yes, they have separate birthdays even though they are twins. I was intrigued by the way the two of them have such different personalities, Clara is a beautiful little princess that loves to "talk" and just look at, and touch your face, she even shared her cookie with me. Julius is a little "devil" he crawls around at lightning speed and you really need to keep an eye on him and he gets into everything he can. They also look totally different, but yet very much alike. Julius is a carbon copy of my grandfather and of my brother. Clara looks like a combination of Laura (her beautiful mom), and me when I was a baby. Their older brother, Jaron, is a trip, he has definitely changed since we saw him a year ago at CHristmas. He is such a great boy, and I just loved spending time with him. I will miss all of them.

It is, however, good to be back in Tallahassee. The main reason is.... the weather, I cannot believe how beautiful it is. I am sitting on the patio smelling the tea olive, wondering how it managed to grow about a foot in ten days. Two years ago it didn't even reach my shoulders, today it is way over my head. There are blooming daffodils all over the neighborhood. I think this might be the beginning of the long awaited spring. It is also great to be back in the pool, I have been such a slacker due to the weather, I was pleasantly surprised that I wasn't stiff or sore at all when I went this morning. I picked up where I was two weeks ago.

While home, I got a lot of compliments on how I am doing with my MD, several people said that they thought I was doing much better physically than I was a year ago. It really made me feel good as I don't see it myself, I just keep going and going, and every time a little progress is made I either don't notice, or get greedy and want more. I still don't understand how I can exercise as much as I do, and not be able to run a marathon, or climb a mountain.



P

Contact email keepinghopejourney@gmail.com

Things you can't see

In two weeks Tom and I will be going to Denmark to visit my family. It has been a long time coming, and a lot of changes have taken place over there. My parents bought a new house, my nephew is a year older, and my brother and his wife had twin babies last April. I am looking forward to seeing them all, to meeting the two little miracles, and to playing with Jaron. What just hit me, though, is that Denmark is in reality just as far away as God and Jesus, I can't see them, or touch them, but none the less, I know they are real, and that I love them. Just because I cannot play with Jaron every day, or pick him up from daycare does not mean that he is not real, or that I don't love him. I do, I know that he is being played with, picked up, and loved. The same holds true for Julius and Clara, I have not met them, but I know in my heart that they exist, and that I love them, that they are loved and cared for even if I cannot do it in person. C S Lewis said something similar when comparing God with New York City. Just because he hasn't seen it, or isn't there, does not mean that it does not exist, he knows it does.

When I initially started my blog, one of the things included in it was a search for a meaning with life, for something more. A couple of years ago I had a hard time coming to terms with this being all there was, a life with MD, and then nothing! I set out reading a bunch of different books, asking a bunch of different questions, I played Devil's Advocate (I still ask a lot of questions and I still play Devil's advocate)but at some point I determined that I could no longer deny the existence of God. By accepting the existence of God I also had to look into this Jesus guy. Who was or is Jesus? What did he do that should convince me that he is the son of God? What has he done for me to make me bow down and worship him?

I am no New Testament Scholar, I am a math teacher. Just like my students need to trust me and believe me when I tell them how to solve an equation, I need to trust the Scholars when they tell me what Christ did, and which historical proofs there are. I used to say that I could not deny the historical existence of Christ, I did not think he was the son of God, that was just ridiculous. He was in my eyes a very good person and a really good teacher. Lewis, however, spent very little time shooting that one down, according to him there are only two options, Jesus was either who he claimed to be, or a madman.

By admitting that I believe that God exists, I cannot deny that Jesus was the son of God. I have put myself in a place where I must either completely deny God or accept Him and Jesus as a part of my life. I have chosen the acceptance. I hope that God and Jesus will be willing to help me figure out where to go from here, I mean, I am taking a turn I never thought I would take. I am not sure what changes it will bring if any. I asked someone if I am still allowed to get angry with God and Jesus and ask why because of the MD, and I was told that yes I am. I guess the difference will have to be for me to stop fighting the wrong battles, slow down and listen. Living life with MD sucks, but believing that something better is waiting for me, makes it easier. I have nothing to loose but everything to gain!

The search for a church we started before Christmas did not take very long. In a previous post I compared theology to beer and said how I have no trouble telling good beer from bad beer. Whereas I don't think we really experienced any bad theology in any of the churches we attended, we did run into a place with a very solid theology and decent seats. How did I know? It just tasted right, one was all I needed!

You can check out the church at http://www.cptchurch.com

Enjoy your weekend, it is going to be around 70 here for the first time since....I don't remember. Once the house has been cleaned I am going to pour me a Coke Zero and watch Tom rake and burn the leaves from last year ;-)

P
Contact email keepinghopejourney@gmail.com

New Beginnings

It is still early next year, but to me it seems as if it has been going on for a long time. My promise not to make any resolutions other than to learn to say no, has already gone out the window, but my failures to say no, have paid off in a positive manner. I will return to that later. Unfortunately it appears that my turtleitis has decided to show up again. Not a full blown attack, but I have used the cold weather in January as an excuse for spending as much time at home as possible, I have just felt a lot like being left alone. Well.... Even when hiding at home, people seem to find you, and pull you out.

I have a very good friend, who writes for the local paper. She and I made Danish sausage and liver pate (medister poelse and leverpostej) before Christmas, and she decided to write an article about me and the food, as well as our day of making Danish food. I was very shy about being in the paper, but didn't know how to say no (strike 1), in addition to the article they wanted a picture of me, Tom took it and we emailed it and I had my picture in the paper (strike 2). Before evening of the day the article and the picture were in the paper I was contacted by a professor at FSU asking me to come speak to her class about Denmark, our customs, protocol etc (strike 3). All within one day....I had no idea people would notice little old me, the picture was after all very small, however, the picture of the medister poelse was plastered on the front page of the food section and people are apparently attracted to sausage in the morning.

I gave the speech at FSU the other day, and received good feedback. Who would have known I would be able to speak in front of a group of strangers like that?. I found out that by focusing on a few particularly friendly faces, I could pretend that I was just having a conversation with a couple of people.

So even though I have already broken my only resolution for the year, I really don't feel that bad, I went so far outside my shell that I am surprised the rubber band holding me in did not burst!

Tom and I have also decided to create budgets this year to figure out where all our money goes etc. We got the Dave Ramsey program as a Christmas present. In the spirit of avoiding impulsive spending I have unsubscribed to ALL of the email updates and coupons I used to get from stores like Express, New York and Company, AE etc. My inbox is a lot less cluttered, and as of now I have noticed that it is a lot easier to stay off their sites and thus avoiding the temptation of heading to the mall, or getting out the credit card and doing some shopping online. We have not really created the budget yet, but we are very aware of where all our money goes, and I think that very soon we will be able to create it, and also reach step one of Dave Ramsey's program. Wish us luck!

Next Year

It is next year now!!!! For the first time I really haven't made any New Year's resolutions. I tell people that my resolution is to learn to say no, but that has nothing to do with New Year's, I resolve to learn to say no every time I stretch myself too thin!

No one ever makes New Year's resolutions with bad intentions, most resolutions are about making oneself a better and/or healthier person. I just don't think most resolutions are kept much past January 3rd, if they are even started at all, after all we don't want to throw the rest of the dessert from New Year's eve out do we?.

Just as I am not making any resolutions I probably wouldn't keep anyway, I am also not starting 2011 of filled with excitement and hope as I usually do a new year. I usually watch the ball drop with butterflies in my stomach in anticipation of all the good and exciting things the new year will bring. Every year I am convinced that it will be the magical year where all the difference is made. The year where a cure or treatment for MD (you can really add any of the terrible chronic diseases out there) is found.

It may sound as if I am very pessimistic right now, but I don't think I am. I am realistic, and being realistic is better than being a fool. By believing that the turn of a calendar will change anything at all, you just set yourself up for failure! Change is an ongoing process that takes place all the time. A process we have to be active participants in. 2010 was definitely a year of change for me, and I left it in a very different place than I entered it.

The biggest change has definitely been the fact that I finally started to fight my "turtleitis" (some of you may remember that I used that term in my introduction to the blog). Opening up, and telling people about my fight with MD, has made life easier in so many ways. I not only learned how many people really care about me, but I also learned how many people don't care one bit that I have MD. They define me as Pernille and not as Pernille with MD. That is a positive change I would have never even imagined when we entered 2010! I have met so many wonderful and inspirational people all because I decided to write this blog...Coincidence?

Another change has been my search for something bigger than myself, and I have spent hours and hours reading and researching. I have asked stupid questions of people, and I have had to give in and admit, that there is a God out there. The biggest reason, and possibly also simplest reason, for me to decide that there is a God, is that there are to many coincidences in life for them to be coincidences! Someone has to be putting them in place. I am very insecure about what the acceptance of a God means. Some say that it is pretty straight forward, and maybe it is, it is possible that I just put way to much thought into it. Either way, the journey is still interesting, and I look forward to continuing it this year.

I have not had a chance to be that active in the pool most of December because it has been really really cold, but beginning Monday I should be able to go back. The reason why I mention the pool is that my neurologist has allowed me to increase my albuterol by a small amount every day just to see if I can get an added benefit again. I hope so! I will do my best to remember the albuterol updates.

Finally, there is one area of 2010, where that has been very little, if any change at all, and that is the progression of the MD. I am leaving 2010 in much the same place as I entered it, and I thank God for that!


Happy New Year!

P

Contact email keepinghopejourney@gmail.com