Merry Jul

It is not quite New Years yet, but today did, nonetheless, seem like a good day for a little bit of reflection. Tom and I slept in after attending an 11PM candlelight service at a PCUSA(*) church (the one with the really nice seats). I have been thinking that since I have decided that God and Jesus do exist, that it was time for me to change my approach to Christmas, and move away from my Christmases past to my Christmas present (no pun intended) and toward my Christmases of the future.

In the past, Christmas never had anything to do with a child born in a manger far away over 2000 years ago. Well, I did go through all the motions: sang the songs, decorated the tree, etc... but Christmas to me was just (just should not be taken lightly as Christmas did mean a lot) a wonderful opportunity for the family to stop and get together and enjoy each others' company without the usual hustle and bustle of the world. Christmas always brought with it a certain undescribeable feeling, a feeling of not only anxiously awaiting the chance to open the gifts under the tree, but also of the scents, sounds, and sights. Christmas was special even if Christ was missing in the equation and I was only a Christian by name (I was after all Baptized and confirmed in the Lutheran church).

As previously mentioned, I was then thinking about how I would need to change my approach to Christmas from my Christmases past to my Christmas present. OK, there may actually be a little bit of a pun here.... This year, even though I tried to add Christ back in the equation, I still found myself anxiously awaiting the chance to open the gifts under the tree. Every day I waited by the door for the postman to deliver my gifts from back home; they have not arrived yet. My theory on the Christmas boxes is that he is holding them hostage because we have not given him a Christmas present. The reason why I decided to look into Christianity was, that dealing with a crippling disease without some kind of faith, is really not an option. The pastor last night really did a good job describing it in his sermon. He described it as there is a little something undescribable missing in your life; he hit the nail on the head by quoting one of my favorite authors, scholars, thinkers, namely Jack (C.S. Lewis). He quoted a small passage from the book Surprised by Joy "The experience of Joy is that of an unsatisfied desire which is itself more desirable than any other satisfaction" (Surprised by Joy p 17). For a moment while in church last night I had that feeling. The feeling that it was OK that my Christmas presents from Denmark had not shown up, it was OK that all I could afford to buy for Tom this year was a Belgian Waffle maker on clearance from Kohl's, it was really all OK for just a moment. For a little while there was peace, no MD, no bills, no cold weather, no leaking toilets... nothing, just peace.

I hope that over the next year(s) I will be able to investigate and develop this little something undescribable missing in my life. I hope that I will be able to celebrate my future Christmases with more peace, and less fear and worry, with the trust and faith in a God I am just now getting to know.

Merry Christmas and God Bless us Everyone.

Contact email keepinghopejourney@gmail.com

*One of two branches of the Presbyterian church we have attended

Alternative Christmas Presents

As I sit on my couch with a full belly, in my warm robe, under a blanket in my slightly messy living room, I realize how lucky I really am. I am not hungry, I have a nice and warm robe, a great quilt made with love by grandma Elsie, and enough stuff to make my living room slightly messy! I have a loving husband and the cutest pets in the world. I want all of you to take a break, look around, and take in your surroundings, just for a moment before you continue reading......

Last night I volunteered at an Alternative Christmas Market, I had no idea what it was, I just knew that fdoa (Florida Disabled Outdoors Association) was going to have a table there, and I like to help out whenever I can.

The alternative Christmas market I was helping out at was held at Christ Presbyterian Church here in Tallahassee. It was a fund raising event,where several worthy organizations had a chance to introduce themselves to the community, and hopefully encourage people to consider buying alternative Christmas presents this year. Some booths sold items, but all had lists of different levels of donations you could make in someone's name. When I look around my living room I see that I don't really have a lot of room for new things, I mean, if you own enough things to make a room messy, you own enough right?. The only two places I still have room is in my heart and in my closet (I have lots of empty hangers I am human after all)We don't have a lot of money, so if we are able to make a donation it will be small, but I am, going to ask Tom to in place of buying me yet another thing (clothes, especially boots excluded), make a donating to one of the many charities we saw last night. I am sure most of you have similar events in your area, if not, visit http://www.cpcusa.org/altmarket.htm I promise that you will find something worthwhile in there. Many of the organizations, in addition to asking for monetary donations, also need volunteers to help out, used clothing etc. Why not spend a little time next year volunteering somewhere as a Christmas present to ourselves? It doesn't cost anything, but it will help fill up our hearts, no organization is more or less worthy than the other.


P

Contact email keepinghopejourney@gmail.com

Heaven

It has been a long time since I last wrote here, actually the longest since I started my blog, the only reason is simply that I have been very busy. Busy is good, but being the moseying kind, a little peace and quiet is always to be desired. For those of you who are not familiar with my blog, moseying is what I do when I just need alone time. I usually spend the time cooking, and Yesterday was no exception, we have enough Danish comfort food to feed a small army. My batteries are recharged, at least a little.

Yesterday I was very saddened to hear that Elizabeth Edwards, a strong, inspiring, graceful, and admirable woman, has halted her treatments for cancer. Her life is now measured in weeks not months. Sometimes you just wonder why the good ones have to travel the roughest roads, and the only reason can be that something better will be there for her. I am currently reading a book called Heaven by Randy Alcorn, it is taking me a long time to get through it as some of the stuff in there is way beyond my intellectual capabilities, but I try none the less. However, last night while reading, I did see just a little ray of hope. I don't know if Elizabeth Edwards believes in Jesus, but I have a feeling she does, and Alcorn pretty much said that the harder your life on Earth, the bigger your reward in Heaven. I am sure Elizabeth will be very rich, and I can only hope to be good enough to meet her and draw on her wisdom!

Reading the book, Heaven, in addition to being a challenge to my little brain, can at times be somewhat emotional. Mr Alcorn conducted a lot of research before writing it, and he is not sparing any punches! I am still new to Christianity and I don't even know if I can even call myself a Christian. Some say that I could or should, so I might. One of my arguments for not being a Christian in the past was that why would I want to go to Heaven when all the interesting and fun people will be in hell?, besides I don't like the cold! I was OK with taking the chance that God was real! I was OK with taking the chance that if I was wrong I would be going to Hell. I am not so sure anymore, I am pretty convinced that God is real, if I believe that God is real, then there is one of Alcorn's statements that I have a hard time coming to terms with. The statement is that if I become a Christian, I will never again see the people I love, who went ahead of me, and who obviously won't be in Heaven. He says that even good people will go to Hell if they don't accept Jesus, I will need to ponder that one. Maybe I should mosey over in the kitchen and see if there is anything to cook :-)

Please pray for the Edwards family I am not yet qualified to do so, but I know that a lot of you are.


P


Contact email keepinghopejourney@gmail.com

Beer and Theology

This morning, CBS Sunday Morning, showed a story on beer. I like beer, but only "good" beer. One of the people they interviewed said that knowing good beer is at least as hard as knowing good wine. It made me chuckle but yes, in my opinion he was definitely right. My comment to Tom was that knowing good beer is kind of like knowing good theology. Good beer is created through a thorough process requiring years of studying; a brewer takes as much pride in his product as a good theologian does in sharing his theology with people.

To me, telling good, mediocre, and bad beer apart is easy. The flavor goes on a sliding scale from strong, powerful, and satisfying to bitter water with an odd yellowish color. When you drink a good beer you enjoy it, and you only need one to feel satisfied.

OK, you may think that comparing beer with theology is a stretch, and it probably is, but for me, finding out exactly what good theology is, is not an easy task. My first and biggest disappointment in both, is the dilution that takes place in order to make them mainstream and acceptable to the masses.

I have lived in America for a little over 11 years now, and you can count on one hand the number of times I have drunk a light beer. To me, this kind of product has had many key ingredients removed in order to offer a middle of the road solution that will keep people at a certain level of happiness.

I feel that the same is taking place and has been taking place in the Christian world. The real God and the real Bible is not soft and cuddly; it is not diluted like cheap beer. The real God is strong, powerful, and satisfying, and you will only need one. I am still trying out different churches; the one I tried today was different from any I had ever had before, the theology was good, the flavor was intense, but yet sweet and possibly addictive in the long run.

P

Contact email keepinghopejourney@gmail.com

Life in HD

I got my first pair of real glasses the other day. They are not really that strong. I don't have to use them all the time, mostly when driving or looking at things more than 10 feet away. Yesterday, when I wore them outside for the first time the world looked as if it was filmed in HD. The branches on the trees in the distance didn't blend together, everything was just clearer. The change was not huge but it was noticeable and very pleasant; it made me think about a metaphor they actually represent to me.

I am still spending a lot of time thinking about Christianity, and I enjoy my new partner in crime, Tom. I have been, and I still am, whining about having MD (and if I ever stopped complaining, I would no longer be me). I hate MD, but the other night, I caught myself saying a little prayer to God. A prayer, that none the less showed me, that God is no longer just a figment of my imagination, he is real. I understand, that I don't deserve anything from him, and I have no right to expect that he gives me what I ask for. But in my prayer, which just came to me, I asked him to please help me deal gracefully with the hand he dealt me, since it appears I am stuck with it. The prayer was sincere, and not planned at all. When I have tried to pray in the past, I have always fallen asleep or ended up daydreaming. This prayer was different. In a few moments, it upgraded my relationship with God to HD, much like my new glasses upgraded nature. A subtle but very pleasant change!


Have a great weekend!

P


Contact email keepinghopejourney@gmail.com

I'm thankful for.....

Last night, Tom went out with a couple of his friends, so I am letting him sleep in, I can be a good wife every once in a while. No, I actually enjoy this time of peacandof quiet to just think. Unfortunately I think that thinking, or pondering, as I like to call it is underrated, today's life does not really allow for us to ever just sit down and think. Thanksgiving is still a week and a half away, but I have some things I am very thankful for at this moment. I will not be mentioning names, but I hope that those of you I am referring to, will recognize yourselves.

The past few weeks, I have done things I haven't done for a long time, things I thought impossible, and it was really not until I sat down and thought about it, that I realized what it really is I have done. I have taken back a huge part of the freedom I have lost. OK, I am not cured, I still have MD, and I will not be running the Jingle Bell Run anytime soon, but I have done some things I had given up on, things that caused me great pain when I would think about them.

Personally I believe that the biggest victory is that I allowed someone who was not Tom to help me out. I have for years stayed out of situations where I would need help and Tom would either be unable to be there, or just be the odd one out (you really don't bring your husband along to a girls' night out). People have often offered to help me out, but I have not been able to accept the help, I have felt humiliated, and just uncomfortable having people touch me, even if it is only pulling at my belt hoops to help support me etc. The other night I allowed a friend to help me out! When I went horseback riding I allowed people to help me out, and when I went to Tampa with FDOA a few weeks back I also depended on someone who was not Tom to help me, and to make sure I stayed safe.

I have previously complained about how the lack of independence is the worst part of MD, and the fact that I walk like a duck, and have general low self esteem embarrasses me, and many of you have repeatedly said to me that I should not let the MD define me and that I am not MD. Today I know I am not, don't jump for joy just yet, I could just be a moment of clarity, but I do want to tell you about this past week and about my plans for the next few days, and then compare them to how I would have handled this weekend a few weeks ago.

Earlier this week I went out for a birthday lunch with a friend, it was at a bar with high chairs, so seating was no issue, but I went on my own, and asked my friend for help and support when I felt insecure. That day I was also wearing my awesome new boots. Most of you probably take putting on shoes and boots for granted, I am not going to go into details other than, the video would have gone viral on youtube had it been taped when I put them on, but I was going to wear them come hell or high water or whatever the saying is. I kept the boots on until bedtime that night!

Later today I am going out for lunch with a couple of my friends, friends, that obviously don't care about my disability or they would have said no to coming. I will need Tom's help to get up at the restaurant as the chairs are fairly low, but he has graciously agreed to drop me off, do next week's grocery shopping and then come back and get me when we are done.

Tonight, a friend of mine is celebrating her birthday at a local bar/restaurant. We had already said we would come when Tom was offered tickets to tonight's Seminole game. I told Tom that I would ask my friend if they would mind being my buffer at the restaurant so that he could go to the game, and she was more than happy to do that. Tom appeared more insecure about the arrangement than I did. The tickets fell through so he will be coming tonight anyway. But for a moment we were in a place where none of us had to make a sacrifice in order for the other to do what he/she wanted.

Monday I will be going to an Indian lunch buffet with a friend, once again without Tom, and once again accepting the help from someone other than him. The friend I am going out for lunch with has also said that if I ever want to go shopping, she would like to come along.

All right, a few weeks ago, I would have worn flipflops (I love flip flops, don't get me wrong, but half the reason I always wear them is out of convenience, and because it is hard for me to find shoes etc that are easy to walk in). I would have done the birthday lunch. The friend I went with is one of the people I am the most comfortable around, and whom I care deeply about!

Accepting help from my friend as I did the other night, and as I would be willing to do tonight to allow for Tom to go to the game would have been completely out of the question a few weeks ago. Tom would have missed out on the game or if he had been offered the tickets before we had been invited to the party I would have stayed home and gone to bed early. Tonight, Tom and I could have gone out separately for the first time in years, it will not happen, but I feel good about knowing that the option was considered.

The lunch at the Indian buffet on Monday was suggested by my friend, she knows she will need to help me, and by asking me to go out for lunch at a buffet (will need to get up and down etc) means that she doesn't care, she wants lunch with me.

I am incredible thankful for those of you who have been reading my blog, and shown your support. Some of you have allowed me to vent and cry when needed! I have said this before, I had no idea that people would be interested in my story. I actually haven't met most of you face to face, but your support and encouragement makes me feel that I do!

I am still enjoying my spiritual search, and you know what, I enjoy it even more than I have been as I now have a travel companion! Tom enjoyed going to church with me last Sunday, and told me that he had wanted to go on the trip with me for years, but that he didn't want to push it because of everything else that was going on inside my little head. We have been talking quite a bit about what Christianity means, and what we want from it. Well you can't really choose what you want from it, but I think you get my point! Last night, when he was on his way to his friend's house, he called me and told me that he accidentally put the radio on a Christian program, and the preacher there explained the concept of predestination, and that he now knew what I had been talking about.

I am thankful for all of you, and I am thankful for having found a little bit of self esteem that has helped bring a little bit of the Kick a__ girl I once knew back out.

P

Contact email keepinghopejourney@gmail.com

HAPPY VETERANS'S DAY

I just wanted to say thank you to those of you who have served, or who are serving in the armed forces. Volunteering to do what you do for your country is a very noble and selfless thing to do. You are willing to make the ultimate sacrifice and that should never be forgotten.



Contact email keepinghopejourney@gmail.com

Hobbits

In his writings, Tolkien depicted Hobbits as fond of an unadventurous bucolic life of farming, eating, and socializing, although capable of defending their homes courageously if the need arises. They would enjoy at least seven meals a day, if possible, breakfast, second breakfast, elevenses, luncheon, afternoon tea, dinner and (later in the evening) supper. They were often described as enjoying simple food—such as bread, meat, potatoes, tea, and cheese—and having a particular passion for mushrooms (I wouldn't say that mushrooms and tea are stables but they are included in Danish cuisine).

It is not the first time I am comparing Danes to Hobbits, but unfortunately, this time it will not be a positive comparison. Take a look at the above description of Hobbits, nice right? It might as well have been a description of Denmark. However, what doesn't shine through in this description of Hobbits or Danes is a fear of the unknown, and just like the Hobbits, Danes are capable of defending their homes.

For some reason, Denmark, and Danes living in Denmark feel threatened by anything and anyone who is different. They appear to be insecure about who they are and where they stand, and because of that, they have completely ignored the need for integration and communication when strangers enter their realm. They fear the Danish culture will disappear, and are fiercely protecting their home. People, our culture will only disappear if we let it! The beautiful, friendly, peace loving Danes living in Hobbitton, seem to have taken an you either become one of us, or we don't want you approach to immigration and cultural differences.

A few days ago a new agreement was made to introduce new requirements for immigrants wanting to move to Denmark. The rules (this is a short unedited version) will include the following: You have to be married to a Dane, be well educated, be able to speak two foreign languages, they are stopping just short of requiring certain hair and eye colors, hmmmm. As a Dane it will be harder for me to return and bring Tom with me, if I have not worked for two and a half out of the last three years abroad I don't qualify to bring him, and there are certain other requirements as well.

When Bilbo and Frodo returned to Hobbitton after their respective journeys, they never quite felt at home again, the other hobbits found them "odd", and both ended up in exile. This hobbit definitely feels like Frodo or Bilbo, I've been sent into exile away from the home I love, forced to choose between the man I love and the country I love. Tom! you win!

Peace

Frodo Baggins

Contact email keepinghopejourney@gmail.com

The seats are comfortable!

OK, today was our second attempt at making it to church on a Sunday morning. We had our clothes ready last night, made sure the alarm was set, and with only very little grumbling, we made it in time. We went to a Presbyterian church here in Tallahassee. I had never been to a Presbyterian service before. The church we went to is based on reformed theology. This made it an easy choice for me as most of the books I have been reading have been from the Reformed Calvinist view.

We both liked the service, first of all, the seats were cushioned, I mean who wouldn't be impressed with that? It seems to me that every time I have gone to church lately the pews have been wood and after an hour your butt gets sore. Definitely a plus. They had a huge organ along with a great choir, yet another plus, I love listening to choirs, besides they cover up the noise when the rest of us sing out of tune.

We chose to go to the traditional service, I think we are both too conservative for a contemporary service I am not sure why. The atmosphere was light yet serious enough for the pastor to get his point across during his sermon.

Today's sermon was based on one of my favorite parables, namely the parable of the Good Samaritan. The parable shows the good, the bad, the ugly, and the beautiful in people. The pastor's main conclusion was that we should not label each other, and always value mercy over orthodoxy. There are no boundaries to Christian love, and unorthodox people, such as the Samaritan, a heretic, could inherit eternal life by loving in the way Christ loves. To me that seems to contradict the Calvinist point of total depravity, but who am I to say?. It doesn't matter, the sermon was great with a cleat point, and the seat was comfortable :-)

We have decided that we will try out different churches every Sunday from now until Christmas. Just to kind of get a taste of what is out there, and to determine whether or not going to church is for us. We will be attending today's church again next Sunday as they will have a special service, explaining Presbyterian worship, the order followed service, seasons of the year etc. We thought it would be a good one to attend!

Today's church had the following positive points not in order of importance, just in random order:

1. Comfortable seats
2. Great Choir
3. Cool organ
4. Great sermon
5. Gift bag with coffee mug when we left
6. Fairly young congregation
7. Bulletin where you could fill in the blank during the pastor's sermon to ensure that you pay attention. Brilliant idea for people like me who have very short attention spans, and who tends to day dream.

Things I could have been without:

1. Prayer for Young Disciples, a little puppet play performed for the kids re-enacting the parable of the Good Samaritan. It was neat, but just seemed kind of out of place, more like something that should be done during Sunday school.

Our first impression of this church was definitely positive, but since none of us are that experienced in the traditions of different denominations, we do want to go exploring for a while. I am very good at getting excited and carried away only to loose interest after a short time. It may not be a good idea when choosing a church. Who knows, it may also turn out that we don't need a church. What fascinates me though, is the sense of security and belonging churches seem to offer here in the US.

Remember soft seats automatically go on the plus list!

P

Contact email keepinghopejourney@gmail.com

Queen of excuses

I am sure that at some point in your life, most of you have experienced a dip in your level of motivation, I definitely have, and I am going through one right now. I have not forgotten the blog, actually quite the opposite, I have tried to write entries several times, and nothing happens, my fingers don't walk anywhere, they just sit.

I am not exactly sure how to explain what is going on, I have stayed busy, very busy actually, but yet I have also spent a lot of time just moseying around at home. I am definitely going through a period where going to the pool just does not appeal to me at all, I love going there, and I know I need to go, just like I know I need to eat my vegetables. But sometimes vegetables just don't cut it, you want something different, or even something more. I really really wish I could graduate from the pool to a regular gym so I could change things up a little, spend a couple of days a week in the pool, and a couple of days in the gym.

The Albuterol is definitely still helping, I still feel strong. As mentioned, I have been using my strength moseying around at home. You probably wonder what I mean by that, well my dears it is quite simple. I love cooking and baking etc, so I have literally spent days cooking and baking, I have been happy just spending time alone and have had no desire to be around people. I have branched out a lot and some of you have benefited from it. I have learned how to make mini pumpkin pies from scratch, I made mini pecan pies, and my pride and joy, pumpernickel rye on the grill. I challenged myself to use up things we already had in the pantry and the fridge, it is possible to make an excellent cauliflower soup with very few ingredients, you can make great hummus with chili peppers, chick peas, garlic, and artichokes! While my food has been cooking or baking, I have managed to keep the house clean, so I will no longer need to take you to McD if you show up unannounced. We have had to spend less time cleaning on the weekends! Hey that's a good thing isn't it?

To me, moseying feels good, but in reality it is just a way for me to get out of eating my vegetables.

I am still traveling down my path of experiencing Christianity, Tom and I finally decided that we were going to try to go to church, hey, we could always just sneak in the back door, and never come back if we didn't like it. Tom is Catholic, and technically I am Lutheran. As mentioned in a previous post, I don't like labels, I don't like being labeled disabled. Denominations are also a form of labels. We decided to check out a Presbyterian church, we had heard good things about it. Those of you who know us personally, know that we are NEVER late. Well, we got out of bed Sunday morning, we had plenty of time to drink our coffee, read the paper and still shower and get ready. Once we were done showering we both noticed that we did not have any church appropriate clothes, so after some grumbling etc, we found some nice'ish jeans and shirts, and off we went. We arrived at the church three minutes before the service, and ended up getting a parking spot really far away. There was no way for us (me) to make it inside in time, so there went my plan of sneaking unnoticed in the backdoor. I would be the one coming in late, the one everybody turns around to look at. Everybody would wonder who we are, we would be wearing jeans, I enter walking like a duck! This Saturday we will put our clothes out before we go to bed and give it another shot Sunday morning.

P

Contact email keepinghopejourney@gmail.com

Pondering ...

I suppose my main purpose of this blog is to ponder and share. The level of pondering seems to vary from post to post, and the subjects I ponder about seem to vary as well.

Many of you have probably rightfully suspected that I struggle with coming to terms with my disease, and that I sometimes engage in a little bit of a pity party. Yes I do, I don't particularly enjoy the pity parties, but they just jump on me from behind every now and then.

Yesterday a friend of mine sent me a link to a lady called Laura Hershey. http://www.laurahershey.com. Laura Hershey is, amongst others, a writer, a poet, and an activist. Laura Hershey, has despite severe disability, achieved more than most able bodied people ever will. She is by all means a very admirable woman. I was encouraged to read her blogs on the MDA and the Jerry Lewis MDA Laborday Telethon. If you go back in my blogs, and read my post from labor day this year, you will see that watching the telethon was hard for me, that seeing people with neuro muscular diseases portrayed as helpless really hit me hard, mostly because of my fear of one day becoming "one of them". I really have no beef with the MDA, I have not yet needed them for any services, and so far whenever I have interacted with them it has been pleasant. They have not in any way misrepresented themselves, but yet, when reading Ms Hershey's, blog posts about the telethon, something hit home.

I think that one of the reasons why I often struggle with coming to terms with my disease is that I have a hard time not identifying myself with it. No matter what, I keep thinking that MD is what defines me, despite constantly being told otherwise by people I care deeply about, and who care deeply about me. Finding out who I am is hard when there is this monster constantly poking me, telling me that this is who I am.

Ms Hershey's issue with the MDA and Jerry Lewis in particular was that we are being shown as these helpless people, that need to be pitied since our lives are so terrible. That the only joy in our lives is that we every day sit at home waiting for a cure to come around, and fix us over night. She claims that Mr Lewis portrays himself as this figure, who helps us make it only because he feels sorry for us and comes in and brightens our days. She also says that the MDA is misrepresenting itself by making false or exaggerated claims about the services offered.

All right people, I AM NOT MD, but I do suffer from it, and no matter what, it will always be a part of my life. What I am, however, is a human being as is Ms Hershey, and all of you. I don't like labels I don't want labels, I hate labels. I think that Ms Hershey through her a activism is attempting to level the playing field between "you" and "us", and I am grateful for that. But sometimes I think the gap unintentionally becomes larger due to the alienation of certain people. The MDA is also trying to level the playing field. It is the "you" and "us" mentality I have a hard time with. We are not at war, we are all human beings. My body is broken, but my mind is in fairly decent shape. Some people have broken minds but good bodies. If we would all just stop labeling and yelling, we might be able to figure out how to co-exist without the "you" vs "us" attitude. The playing field will never be level, and it shouldn't be. Imagine if all farmers grew nothing but corn!

We are now once again being brought back to my search for a meaning with my life, or my search for faith. I have found that Christianity in its true form, the way it is supposed to be, is an incredibly open, welcoming, and powerful way of life. It is also hard, challenging, and frustrating, but it does not distinguish between disabled and "abled", ugly, pretty, smart, dumb etc. Christianity gives us a framework, that allows us all to co-exist.

I am proud that I raised money for the MDA, they have helped people I know. But I also think it is amazing that Ms Hershey is drawing attention to certain issues that are ignored, and I love every single one of you who just consider me Pernille, and not your disabled friend Pernille.

Peace!

P

Contact email keepinghopejourney@gmail.com

P cubed and a little bit of horseback riding

I had just started my blog last night, when I somehow managed to hit "publish" and my two and a half lines were published, not only here, but also on facebook and on all the other places that automatically update. Good job Pernille!!! It has been a while since I have published anything, I guess we all go through dry spells once in a while, and I definitely did, I am not sure I am out of it yet, but I am going to try to share a few things with you...

The other day I was lucky enough to go horseback riding with Fdoa, it was fun. I was somewhat concerned about whether or not my core would be strong enough to hold me up on the horse, but there were no problems, I wasn't even close to falling off ;-) a kind gentleman lifted me all the way from the ground and onto the horse as that was the only way I would be able to make it all the way up there. I know that my exercising has paid off in one form or another. I was hoping that the fact that I was able to sit on the horse without assistance meant that I had retrained some of my affected muscles, and that I was reversing the disease slowly and steadily, one muscle at a time. I spoke to a physical therapist about it, and he said that he thought it was probably because I am very good at compensating and that I have kept my unaffected muscles very strong. No matter what, I sat on a horse for a while and I did not fall off!

Two days ago we went to a wedding in St Augustine, it was a very pretty wedding. It was held in an old Catholic Cathedral, Tom said that he is not sure he wants to bring me again as I paid more attention to all the pretty pictures than to what was going on up front ;-) Those of you, who have been there, also know that the parking situation is not the best, so we actually had to walk from the church to the reception and back to the car after wards. For most people that would be nothing, but it was a little ways and I did it all without complaining.

The three P's in the headline stand for Peace, Purpose, and Prayer. I have chosen to write about those three P's this time because all three have taken up a lot of time and space in my limited brain over the past few weeks. The order, Peace, Purpose, and Prayer, should in reality probably be reversed and become Prayer, Purpose, and Peace. Since I can't seem to make up my mind, I am going go start in the middle, namely with Purpose.

When I started this blog back in July, I had just set out on a journey of discovery, I needed to find answers to a lot of things. I suffer from a pretty nasty disease. I had up until that day had a very hard time talking to people about the disease, I felt (and to some extent still do) that I had done something to deserve it. It does not make sense I know that, but we live in a world where, if you do something wrong, you get punished. At the time I was what I would consider a "neutral-theist". Atheist would be to strong a word as I don't think I wrote off God as much as God just not being a part of my life. I set out on my journey in search of a reason, or a purpose for my life, I was getting to a point where I felt that fighting MD was a waste of time, as in the end it would not matter, and if it would not matter, why should I keep fighting?

This leads me to Prayer, the need for a purpose did not initially lead me towards religion or Christianity in particular. My path was clear I wanted to be the first person to magically be cured, write a book about it, and get to meet Robin Roberts on GMA. It would be really awesome if I was the one who came up with the cure as well! You may call me humble! I was dreaming, but you've got to set your goals high right? There is, however, a difference between setting high goals and unattainable goals, my goals are unattainable. Unfortunately, these unattainable goals are the only acceptable goals for me. The only acceptable outcome is a treatment and cure for MD, BEFORE it is to late for me. Having those pretty clear cut goals gave me a new problem, I had a purpose, namely to be the first person to magically (or scientifically) be cured from MD. Heck, I would even accept second, third, or just any old place, as long as I got cured. Reaching the goal that will full fill my purpose will, however, be impossible without the help from some higher power.

I have determined that prayer is a very powerful tool in anyone's journey in life, right now I pray that God will help me find out how to let him into my life. I have been told that it is very easy, I just need to open the door, he is knocking. I hope that once I find the door handle and let him in, that I will be able to direct my prayers towards peace. I do not want to accept that I have MD, and that this is as good as it is going to get, but I want to know that all my efforts are not in vain. The purpose I have defined for myself may not be the purpose God has intended, and if I have to believe what people tell me about God, his intentions are good, so the two of them should not be mutually exclusive should they?

Right now I am working on combining the three P's into a unity, that will help me move forward in my journey.

P

Contact email keepinghopejourney@gmail.com

Throw me a bone?

I have been struggling a little with writer's block this past week, it is the first time since starting my blog that i have been drawing blanks several days in a row. Fall has arrived in Tallahassee, last night I smelled our tea olive bush for the first time this year, and Saturday night we roasted S'mores on a fire in our backyard. I can highly recommend strawberry flavored marshmallows!

I went to see my neurologist for a regular follow up Yesterday, he was impressed with my progress and said that he definitely wants to keep me on the albuterol. He encouraged me to keep and eye out for clinical trials, and that he would do the same. I just went through a list of all clinical trials for MD, and it was pretty much a jungle, but none of them pertained to me at all, I am not a 12 year old boy.

You would think that getting a pat on the back from my neurologist would make me feel really good about myself. But I really didn't, I wanted to impress him, I wanted him to be proud of me, and I wanted him to tell me that I had been misdiagnosed and just needed to take extra multivitamins for a few months, and all would be good. I got two out of three, but the only one that really mattered to me was the one I can never have, the misdiagnosis. I felt as if I was asking for a new video game system, and got the controller, the TV, but not the console.

I am still reading and listening to a lot of podcasts about Christianity. I have noticed a pattern, that kind of intrigues me. When choosing a podcast for the day, I usually choose one that has some relevance to how I am feeling that day, so there really are no coincidences there. However, several evenings, when I have been reading in bed, the exact same subject will be brought up and described in the book I am reading at the time. I guess the guy upstairs wants me to get things from as many angles as possible, he probably knows that I am a little slow to catch on.

I believe that God exists, and I am still angry with him. I think we are in a little bit of a power struggle. Those of you who know God better than I do, will probably tell me that you cannot be in a power struggle with God, but I feel as if I am. I feel defiant like a three year old, I am telling him that as long as he does not let me into his "life" I will not let him into mine. I have a streak of stubbornness, so we could be in for a long struggle. The joke here probably is, that by accepting that he exists I am already in his life, I just don't know where to find myself. It feels as if I am outside a big bubble looking in at the world. I am lost, and jumping up and down to catch someone's attention. I want this someone to let me in and take over to make sure I go where I need to go.

I think that I am probably being petty and making a fool out of myself, as God is so much bigger than me, and so much more than I will ever be able to understand. But what God needs to understand, is that I have been on this earth for nearly 36 years without having any significant contact with him. I am dealing with 36 years of learned human behavior, it doesn't go away over night, and if he doesn't make me feel welcome in terms I can understand, how am I supposed to welcome him in terms we both understand?. He didn't have to wait nearly 36 years before he threw me a bone, it is after all hard to teach an old dog new tricks.

P


Contact email keepinghopejourney@gmail.com

Is it OK to stay mad at God for a while?

I finished my last blog stating that I have decided that there is a God, but also that I am mad at him! After writing the post I started wondering if you can believe in God and be mad at him at the same time, and I decided that you can, so I still am. I understand, that by accepting that there is a God, I also have to accept that he created me, and that I am completely at his Grace. Is Jesus Christ my Lord and Savior? He might be, but first he needs to be moved off the s___ list and onto my good side!

The God I have been reading about lately, is not really a God, that encourages a lot of questions or doubts. Time after time the Bible states that God has something better in store for us, and that no matter what is happening in our lives, it is ultimately for the best! I guess we are dealing with limited atonement here, or the clay pot from Rom 9:21 The passage basically says that a potter has the right to decide what to do with his clay, just like God has the right to decide what to do with his creation. I have been spending a lot of time thinking about why God allows disease and suffering in the world, and I am not sure I have quite accepted the answer, but I do get that if you don’t know what bad is, then it is a lot harder to identify good. I know that I probably got MD for some reason that he knows and that I might figure out. That is why I am mad at him! He could give me a few hints here and there you know! I seem to just flow with the wind and try first one thing, then another without ever feeling completely fulfilled with what I do. See, if God would just give me a few pointers, I might be going in the right direction rather than just fumbling around in the dark! I know that sometimes I search for the answers in all the wrong places, by looking inside myself and not liking what I see. I am not sure I will ever be able to live up to the expectations I set for myself, a kind of opposite self-centeredness I suppose. Could God be trying to tell me to get real, and look at the world around me rather than the one within me? If he is, why then, do I keep searching for the acceptance of others, when I know that it will not lead to the acceptance of myself? Today I was reminded that when someone gives me a compliment, I get confused and don’t know what to do with it.

Sleep tight., if I have time, I will take on the really bad things tomorrow. In the big picture, MD is but a tiny crack in the polish of a clay pot, but in my world, it is everything when I allow it to be.

P


Contact email keepinghopejourney@gmail.com

To Be or Not To Be

I am not sure where this will go today as I have a lot of different thoughts running through my head right now, so I may just let my fingers do the walking one more time and see what happens. I can start with an Albuterol update, still so far so good. The other day when working out in the pool I may have overdone my arm/shoulder work just a little bit as a woke up several times that night with pain in my shoulder. I was able to add weight to my dumbbells, and being the fool I am, I did 10 repetitions with the new weight, and then my usual 50 with my old weight….(Sorry Joe if you are reading this ;-) I just got a little carried away and proud of being able to make increases to my work out. So I guess the Albuterol update is mostly good. My shoulders are better, nothing a couple of Motrin couldn’t take care of.

While surfing the net I came across this quote, by Peter Kreeft. Kreeft is a professor of philosophy at Boston College. After reading it I kind of giggled, and told myself that you can’t really argue with that.

“Someone once said that if you sat a million monkeys at a million typewriters for a million years, one of them would eventually type out all of Hamlet by chance. But when we find the text of Hamlet, we don't wonder whether it came from chance and monkeys. Why then does the atheist use that incredibly improbable explanation for the universe? Clearly, because it is his only chance of remaining an atheist. At this point we need a psychological explanation of the atheist rather than a logical explanation of the universe“.

The reason why I giggled is that this could quite possibly be the simplest and most logical explanation or proof of a God that I have experienced thus far. Sure it is possible to put a million monkeys on a millions typewriters for a million years and have one of them type out Hamlet by chance, there is also a 50/50 chance of me winning the Lottery tonight. I either do or I don’t!!! Well actually I don’t because I don’t play.

The reason why I initially set out on this journey was to find a meaning in life. Why do I want to figure out the meaning of life? I know I risk boring you with my repetition of the fact that I have MD and that it sucks etc etc etc. Every day I get up and do my best to fight this disease, trust me, there is nothing fun about it, it is ugly, and so is cancer, CP, MS etc. I know that so far I am a lot better off than a lot of other people with MD, but that does not mean that it is not a fight. Think about it this way, there are 24 hours in a day, we all have certain things we need to do every day such as shower, eat, work etc. How often do you tell yourself that you wish there were 36 hours in a day rather than 24? Well guess what, if I want to live a “normal” life I actually need 36 hours. The moment I get out of bed in the morning, most of my day has already been taken away by the MD. I have to exercise to make sure my muscles don’t waste away, I have Dr’s appointments to go to not to mention the fact that everything takes longer. It takes me longer than other people to get to and from and in and out of the car. Going into a store takes longer, cleaning the house takes longer. All of the “take longers” are in reality wasted time, time taken away from me, time I wish I had so I could spend more time on want to’s rather than have to’s. I was listening to a Pod cast by Timothy Keller the other day, and his sermon hit right at home with me. Keller, said that the average person is afraid to ask what the meaning of their life is. He said that we are to busy to wonder, to busy to get on with our life. He gave a great example by stating that if he asked me to meet him at a specific place tomorrow I would want to know why, however, if he asked me for the meaning of my life I would not be able to answer him.

A while ago, I felt like Sisyphus, who every day would push a rock up a mountain only to have it roll back down again. Every day I get up and do the same thing . I go to the pool, come home, go to work, go to bed and then get up and do the same thing over again the next day. It all seems so futile. “So what?” many of you will probably ask, and you have every right to ask that, most of you do the same thing. The point is, that I realized, long before most people my age, that we are fighting a losing battle, no matter what we do, we will lose in the end. Pushing the rock up the hill day after day after day makes me very tired. Several times I have asked myself why I keep pushing when the outcome tomorrow will be no different than today, the mountain could even be a little steeper tomorrow.

It was that realization that made me decide to look for a purpose in life, I have so many good things in my life, and I did not want the feeling of despair and meaninglessness to ruin it. The truth is, that people want to live, I want to live, but sometimes we are dealt a hand that simply isn’t fair, and we will start looking for something better. When setting out on my search I had no idea where I would go, my initial intention was to look into as many religions as possible, and try to find my own spirituality that way, a kind of intellectual quest. Well, that was before Sproul, Keller, Zacharias, and Lewis entered my life. It was before I carefully started asking people for directions. It was before I realized that there are no such things as coincidences in life, there are simply to many of them for them to be that, coincidences!

I have decided, that there is a God, there has to be. I have also decided that he is the Christian God who gave us the Bible, and created the world etc. It doesn’t make logical sense to me, but I cannot see how it makes emotional sense for him not to be there, it would take away the purpose of my life. But you know what? I am mad at him! I am mad at him because in order for my life to have meaning I have to believe in him! Other than the argument that my life has no meaning without God, there is always Kreeft’s argument, you can’t beat that, there has to be a God otherwise we would not have Hamlet.

Good Night

P

The atheist can't find God for the same reason that a thief can't find a policeman. Author Unknown



Contact email keepinghopejourney@gmail.com

Quality time with Oakley

Some of you have at times shook your heads at me, and at my fascination with all the little critters you inevitably run into when you live by the woods in Florida. I may be a little crazy, but I can't help but name them, and become attached to them. We have a couple of skinks living in the carport, I named both Hammy as I can't tell them apart, the Danes reading this may follow my reasoning in naming the skinks Hammy since skink kind of sounds like the Danish word for ham. Anyway, last summer we had a snake that took up residence between the screen and the window pane in one of our living room windows. We have needed to get the screen fixed since we moved in. The snake was an oaksnake, and appropriately enough I named him oakley. I don't know a lot about the life of oaksnakes, but he disappeared around the end of October, and I have been worrying about him since then. This morning when I looked out the window, Oakley was back, he was sun bathing on the top of the AC unit. We immediately turned the AC off to make sure he would not accidentally fall in there and get hurt. I spent a long time just looking at him, and I was once again fascinated with nature. His patterns were truly beautiful, and the way he managed to crawl down the side of the AC using all the muscles in his body just amazed me, how did he not fall?

Unfortunately, I am also experiencing another aspect of nature today. A friend of mine from the pool I go to passed away earlier this week, and Tom and I will be attending the funeral in a couple of hours. Funerals are never fun, but they are never the less a part of nature or life.

Maybe the return of Oakley was meant to show me that for every end there is a new beginning. I know that it is probably not Oakley who is out there but that does not make my excitement any less.

I was reminded of the circle of life.

P

Contact email keepinghopejourney@gmail.com

Slowly coming to an agreement ? Part III

It has been a while since I have talked about my search for a God. It is something that is still very much on my mind, and my understanding and appreciation grows every day. In addition to "deciding" whether or not to believe in God, the toughest part of the journey to me, is to truly understand the Bible. I was told there is actually very little understanding to do, the Bible is pretty straight forward. To me this means, that my resistance to organized religion is justified, there are so many different denominations, and if there is only one truth in the Bible, the denominations can't all be right. My search also greatly influences my mood and as I have expressed in a couple of recent posts, I have been dealing with some frustrations lately, my frustrations have not been of benefit to my search for God, actually the two seem vary directly, the more frustrated I get, the more I doubt that God exists, but I am still fighting.

Since writing "Slowly coming to an agreement? part II" I have been introduced to yet another thinker/writer/speaker. His name is Ravi Zacharias. So far Lewis has sparked my curiosity, Sproul has spoken to my intellect, Keller to the practical part of my brain, and Zacharias, in addition to the first three, also to my heart. He speaks to my heart because his writing and speaking is filled with compassion, respect, humor, and very relevant stories from his own life.

These four gentlemen have changed my life. For years I have not been challenged intellectually, and I am definitely getting that challenge now, and hope to never let go of that again. The challenge has actually turned into a battle in my head! Most people out there will confirm that I can be slightly stubborn at times, and that I don't like being wrong, not even if being wrong could prove to be a good thing.

The battle in my head is the battle between two armies, one telling the other that this is all good, this Christianity thing is pretty neat, there is this cool guy that suffered and died for us, AWESOME. And guess what, our soul could live forever in peace without the suffering we have to deal with right now.

The other army, the one that does not like being wrong fires back and says "yeah that is all fine and dandy, these four guys are a lot smarter than we are and ever will be, they are manipulating us, they want to turn us into their disciple, they want us to give away our personality. Come on get a grip, we have MD, deal with it, this is as good as it gets, quit chasing waterfalls!".

Does God exist or am I chasing waterfalls? I don't know, but I have decided to start praying, I am not asking God to magically cure me tomorrow, or tell me the score of the Vikings/Dolphins game on Sunday. Both would be nice, but I don't really think they are the things you pray about. I just have little conversations in my head at night before going to sleep, asking him to please help me figure out if he is real, because I really want him to be. I have nothing to lose.

Before I finish, I want to mention that the other day I got an email that really touched my heart. Tom and I have been asked to be sponsors for our new little nephew Taiten in Sioux Falls. I am honored and humbled to be trusted with that task, and do not feel I merit all the praise I got in the email. I will do my best to be the best sponsor I can!

You can learn more about Ravi Zacharias on http://www.RZIM.org

P

Contact email keepinghopejourney@gmail.com

Picking up the pieces

When I posted my last post, only about five minutes ago, I noticed that I had had exactly 1000 hits on my blog. HOLY COW I don't even know that many people, so thank you to those of you who keep reading time after time. I also know I have emails I need to respond to, they will come!

As many of you probably noticed I did not have a good day on Monday, I have received a lot of positive feedback on the post. OK the good ship Denial narrowly escaped the hurricane, but it was definitely side swept by it, and even though a side swipe is not as bad as a direct hit, it still requires some cleaning up. I am still working on picking up the pieces I dropped on Monday. I am not yet sure where to start, for those of you who have experienced a tropical system, you will know that it can be followed by a lot of rain for a few days, making it hard to determine where to begin.

Seeing people with MD on TV, somehow triggered a reaction to my biggest fear, I shouldn't have watched the show, it was stupid of me. It turned me into a petty, jealous person, wanting other people to hurt the way I do. The truth is, I would never wish this or any chronic disease on anyone.

On Monday I had a feeling of getting no return on my investment, deep inside I know I am getting some kind of return, just not the kind I am looking for. Yesterday I went shopping alone at Kohl's for the first time in who knows how long, that is a victory, but being who I am, I want the mall, Kohl's, despite their awesome clearance racks, just isn't good enough.

For the entire week I felt absolutely no inspiration to write, my honesty on Monday actually scared me, I let you see the weak me. I want to be this strong person, who isn't intimidated by much. A person who faces her fate with grace and dignity and not with self pity, pettiness, and self loathing. The truth is that sometimes life intimidates the crap out of me, and when that happens I just want to throw my hands in the air, curl up into a little ball roll into a corner, and ask y'all to please leave me alone! Did you know that that is the hardest but most important urge to fight? Once you are curled up, uncurling is very hard to do, and I am the only one who will be able to do it, I am the only one who can decide to continue my fight.

However, when I feel the support from Tom, from my family, from you, from my friends at the pool, and from the stranger, who told me that I was a true inspiration to her, it is a little easier to stay uncurled.

My five good things for today are:

I get to spend the afternoon watching football with friends, I don't like football, but I do like my friends

I am bringing Bowl of Cheese and may even eat a little of it even though it spells instant heart attack

James is lying on my feet

I have great friends who without knowing it helped me figure out where to start cleaning up after the near hit

Tom and I got to watch a humming bird in the backyard earlier.

Peace!

P
Contact email keepinghopejourney@gmail.com

The tale of the missing post....

Last night I spent quite a while writing this post, as usual I took a break publishing to remove myself from it, and allow for any additional editing if needed, when I returned to do my editing, the post had gone missing, and I still haven't found it. Tom, who is a conspiracy theorist, thinks the government took it. If any of you run into it let me know, it was quite a bit better than what I have come up with today. On the left side of the homepage of the blog you will see some links I put in under the heading only two more days. They are articles and blogs I found interesting Yesterday.

I had initially decided that I was not going to comment on 9/11 or on the controversy in connection with the burning of the Quran and the building of the Islamic Cultural Center or Mosque or whatever you want to call it near Ground Zero. I didn't think I had anything to add, and I probably don't, but a few things kept nagging me. The thing that made me decide to write about 9/11, Pastor Jones, and the Cultural Center anyway was when a student made a comment that made me stop dead in my tracks Thursday night. We were just beginning our last hour of instruction when a high school freshman sat down at my table. After sitting down he said "Only two more days!". I thought that perhaps he was referring to an upcoming birthday or other exciting event a 14 year old looks forward to. Nothing was further from my mind than the answer I got when I asked him what was going to happen in two days, he said "It is the burning of the Quran day". My chin dropped, and in order for me to save the situation and prevent a discussion, the only response I could give him was "Religion and Politics have no place at this table, so please do not mention this issue again!". The expression of horror on my face must have been so obvious that this student, who usually takes pride in seeing how far he can push me before I crack and raise my voice at him (for those of you who don't know, one of Sylvan's policies is that it is never necessary to raise your voice at a child), actually got quiet and said "Yeah, I really don't agree with it either, I was just kidding".

Was he kidding? I don't know, I hope he was, but the comment was obviously not taken from out of the blue, this young man had heard it made somewhere, and obviously thought it appropriate to repeat in a semi public setting. The comment made me reflect on quite a few issues both in connection with the anniversary of 9/11, but also in how we are living in a society driven by ignorance and fear.

As of now, the burning of the Quran, is canceled, I am not sure what Pastor Jones's motives for the cancellation are, I can only guess, but I am sure he at some point will proclaim himself some kind of hero. He will probably not waste any time telling the world how he took the high road by canceling the burning. Deep inside I think we all know that the Muslim Cultural Center will not be moved, and frankly I don't think it should be moved. I know that some of you may be outraged about what I just wrote, and that is fine. You are entitled to being angry with me, you have a first amendment right to, but before you stop reading, and write me off as an unpatriotic, insensitive atheist supporting the enemy, please consider what I have to say.

First of all, I am not unpatriotic, quite the opposite, the Muslim community is entitled to build their Cultural Center wherever they want because of their constitutional right to free religion, how would you like it if I told you that you couldn't put your church at the end of my street because half way down my street a Christian extremist hit me in my car on purpose because he didn't like my lifestyle?. Should a few extremists allow for an entire population to be hated and feared? Think about it!!! Could a better location have been chosen, or could more communication have taken place before deciding on where to build the Mosque, absolutely, but I do not think the location was chosen as a way to provoke unrest between Christians and Muslims. Imam Rauf (the Imam behind the center) even said in an interview with Soledad O'Brien, that had he known the controversy this would create he would have reconsidered the location, or at least tried to negotiate an acceptable solution for all parties.

Am I an insensitive atheist supporting the enemy, absolutely not! As most of you know I have been on a quest lately to figure out what this Christianity thing is, and whether or not it has any truth to it. I have learned a lot, and have to some extent accepted that there may be a God, and that Jesus Christ may be his son, at least something is stirring out there. No I am not an atheist supporting the enemy, I just don't want history to repeat itself, and judging other people is not my job but God's. I encourage you all to follow this link, and read John Blake's blog posting on the burning of holy books, I could not have written it better myself http://religion.blogs.cnn.com/2010/09/10/would-muslim-burn-the-bible/

This actually brings me to the core or my main reason for deciding to write the post even though I really didn't want to. Right now we live in a world run by a sensationalist media always looking for the next big story, along with a lot of people more than willing to provide it. The only thing I think we are getting from this is a society of scared, gullible, and ignorant people. Yeah I am calling us gullible and ignorant. Most of us have received our religious education through Sunday school in our respective churches, and lets face it, how likely is Sunday school at the Lutheran church down on the corner to introduce it's children to Islam, Catholicism, Judaism, Buddhism....? We are not being taught in school because of the separation of church and state, and a bunch of fools not wanting their children exposed to any religion at all. We are all left to either believe what we see on TV or to make ourselves study these other religions in order to understand them, and determine if they really are as evil as we think they are. How many of you have felt compelled to stop by the religion section at the library and browse through all the different books on religion?

It is easy to believe everything you see on TV, and for some reason I think that we, as people are conditioned to think that the louder a person yells, the more right he/she is. Pastor Jones is one of the people who yells really loud, his church has about 50 members, and he has managed to get coverage all over the world. He has managed to make people believe that it is OK to burn the Quran because..., well why did he make us believe that it is OK? I think that was forgotten somewhere in the shuffle because we were to busy listening to Glenn Beck comparing the burning of the Quran with the construction of the Islamic Cultural Center. We can't forget that we also had to determine whether or not having Bristol Palin on Dancing with the Stars was a good idea, and if Snooki or whatever the obnoxious chubby person using up oxygen and taking up valuable airspace on TV is called should have painted her nails pink or green.

We my dears, have become a nation of complacent, ignorant, scared, gullible people, suffering from a severe case of group think. I think it is time for all of us in the "middle" to stand up and ask these extremists to STOP in the name of humanity. We do not want to live in a state of constant fear, we do not want our high school freshmen to think that it is cool to be excited about the planned destruction of a holy book. We need to stand up for our future, we need to set an example for our teenagers and show them that intolerance and ignorance is unacceptable. We need to raise educated children, who are capable of questioning what they see and hear, we need to let them know that Al Sharpton, Jessie Jackson, and Glenn Beck are the very loud minority, there is a middle, a middle in which we can at least attempt to communicate. If after reviewing as much of the information as possible people still agree with Sharpton or Beck, then so be it, at least an educated decision was made.

Appropriately enough, Tom and I watched the movie Good Night and Good Luck last night, this world needs more Edward R Murrow's, and I will quote his last lines from the movie, and hope that we will all open our eyes to what is going on:

"To those who say people wouldn't look; they wouldn't be interested; they're too complacent, indifferent and insulated, I can only reply: There is, in one reporters opinion, considerable evidence against that contention. But even if they are
right, what have they got to lose? Because if they are right, and this instrument is good for nothing but to entertain, amuse and insulate, then the tube is flickering now and we will soon see that the whole struggle is lost. This instrument can teach, it can illuminate; yes, and it can even inspire. But it can do so only to the extent that humans are determined to use it to those ends.
Otherwise it is merely wires and lights in a box. Good night, and good luck."

Contact email keepinghopejourney@gmail.com

The good ship Denial

I have started my fourth week of albuterol, and I have good news to report. No miracles, but I still feel some increase in my strength, they are just little things, but they are none the less noticeable not only by me, but also by others. Keep your fingers crossed that this keeps up, I like it.

As most of you know, today is Labor Day, which means that the Jerry Lewis MDA telethon is on. I just turned the TV to channel 9 here in Tallahassee, it appears that a lot of local businesses are making donations, but the people picking up the phones are not overly stressed. Check out your local tv station, and if they look as bored as they do here in Tallahassee, consider making a call.... 1-800-631-0746 or go to http://www.mda.org We need the money, not just for the kids, but also for us adults. We need funding for research, research is our only hope. Thank you to those of you who donated on my website as well.

Before I was diagnosed with MD the telethon was just something that was on TV on Labor Day, some kind of boring show that was on all day. I am not even sure we ever donated money, I had no idea what MD was. Well that has changed. I still don't watch the show, but now it is for a different reason. The reason why I don't watch the show now, is that it rocks my boat, the boat I sail in every day called Denial.

My life is different from the lives of most of you, well, everybody's life is different, but there are things I do differently. I don't just run to the store, I don't just do a lot of things that most people take for granted. I have learned to live with the way my situation is right now, I don't like it, and at times I get angry and call myself names. I know there are people out there who are worse off than I am, my heart breaks for every single one of them/you, but I take no solace in it, people are by nature selfish.

I have only met one other person with MD, and he is a 11 year old boy. His mother works in our local grocery store, and I met him at an outdoors event about a year and a half ago. His MD is different than mine, with different symptoms and progression. I don't relate to people with MD. When I turned the TV on to the telethon about an hour ago, the good ship hit a hurricane. There was a little "intermission" where they showed a video of people with MD, and my brain immediately said: "that is not me, it can't be". I know I am a long way away from the pictures they showed of people needing lifts etc to get from their bed to their chair etc, but it none the less became very real to me in just one moment. It made me sad, sad for the people I saw, but mostly I felt sad for myself, I felt self pity, anger, and grief. Even though I try to have a positive outlook on life, my ship will sometimes get hit by a hurricane, and then there is very little I can do to steer it. The reality of my life is that I will more than likely at some point be 100% dependent on other people. On a good day I will tell myself that we probably all will at some point or another, but on a day like today, where it is a little windy around me, I feel sad that it will probably happen to me a lot sooner than it will happen to everybody else.

Unfortunately this feeling of self pity, sadness, depression or whatever you want to call it, brings out a side of me that I don't like, namely the jealous side. Yeah, sometimes I am jealous, and there is nothing I can do about it. I am never jealous of people who have had to work to get what they want, or people who don't show off, but on days like today I have a very hard time feeling happy for people who make big problems out of small issues.

A few weeks ago I was encouraged to write down five good things about the day every day, I am not as good at it is a probably should be, but I have decided to share my good things with you today, maybe it will help the hurricane blow over.

Today is a good day because:

1. I get to spend it with Tom, James, and Clifford in our wonderful house!
2. The sun is shining, and I get to sit outside and enjoy it. (while watching Tom mow the lawn??)
3. I am going to a BBQ later
4. I have a lot of people who care about me.
5. I woke up and I am still able to do everything I was able to do Yesterday!

Enjoy your day, each other, and what you have. Hurricanes can come on quicker than you think!

P

Contact email keepinghopejourney@gmail.com

Sticking my head out!

I am well aware that I may both deserve, and receive, a slap across the face from several of you after you read my post today. They say that among friends you should never discuss religion and politics. Well so far I have exposed all of you to a lot of religious musings without having been smacked around, so it may be about time.

I am and have always been a proud Liberal, but what I am going to say now, may by some be perceived as if I have joined the "enemy's" camp and become a traitor to my own. I am guilty of neither offense.

I was watching the coverage of Glenn Beck's rally in DC this morning. Personally I think the guy is a blabbering idiot, that really just should be ignored, the more we pay attention to him, the more tickled he will be! But.... what struck me and actually also annoyed me, was all of the liberal people, who were upset that Beck will be hosting a rally at the steps of the Lincoln Memorial.

This is not an issue about whether or not Beck should be allowed to speak from the steps of the Lincoln Memorial. We live in a country with free speech, and therefore as liberals it is our duty to support his right to have his rally. We don't have to like it, but we have no right to fight it!

Two of multiple definitions of "liberal" on Dictionary.com are

1: Favoring or permitting freedom of action, esp. with respect to matters of personal belief or expression

2: Favorable to or in accord with concepts of maximum individual freedom possible, esp. as guaranteed by law and secured by governmental protection of civil liberties.


To me those two definitions represent the essence of what it means to be a liberal to me, just because someone does not have the same values or ideas as I do, does not make his or her ideas less valid!

Yeah, Beck probably could have picked a different time and place for his rally, but he didn't...just like the New York mosque. Did he do it to cause controversy and uproar by doing it in the same location and on the 47th anniversary of King's I have a Dream speech? I don't doubt it for a second, this was all a well thought out plan. Beck wanted to make us come out and show that we are really not as liberal as we would like people to think we are. And guess what? Some of us fell for it!

Let him rally away, we will always have King, he fought to make sure that we all have the right to free speech, even Glenn Beck. If supporting Mr Beck's rally at this inopportune time and place makes me less of a liberal, then so be it. In my mind it makes me more of one!

Enjoy your weekend! I look forward to taking on feminism :-)

P

Contact email keepinghopejourney@gmail.com

Jump

I have now decided that the effects I am feeling are not placebo effects, but little positive effects of the albuterol. Someone told me, why not believe that it is the albuterol? and that is true, why not?

I don't think I ever completely covered the subject of fear. We all live with fear every single day, fear that we get sick, fear that something will happen to a loved one, we fear this and that. It is a part of life. I too have fears. Do I have more fears than the average person? Maybe, maybe not. My fears are that the MD decides to take off tomorrow and I will have lost all mobility within the next couple of months. You guys don't have that fear, but we all have the fear that we could get hit by a semi truck going home form work tomorrow, if that happens my fear of the MD taking off will become secondary. There is fear (the very real fears of getting hit by a truck, or my MD taking off), but then there is also the fear that may or may not be real. The fear I am talking about is actually the "fear of fear itself" as FDR said.

No, I have not lost it. Living with MD or any other crippling disease, create certain fears. I refer to them as my self fulfilling prophesies. No matter where I go I am always afraid to fall. I usually don't fall, but when it does happen, I usually have a feeling of fear deep in the pit of my stomach a few seconds or even minutes before it happens. I have found myself walking on a slope thinking "oh oh, this looks like a dangerous slope I should be careful" and then, 30 seconds later I will be on the ground on my butt. The fear scares me!

Sometimes I also have irrational fears. For some odd reason I have decided that stepping off curbs to get to my car is VERY DANGEROUS, so now I make sure I touch someone's hand when doing so. I have never fallen off a curb, but my mind just decided to fear them.

Where I am going with this is, that I have physically been doing a little bit better because of the albuterol, and I think I am ready to face some of my scary fears, the ones I fear only because they are fears. I spoke to a therapist at the pool where I work out in the morning about how I should approach the curb and other steps in a safe manner, and her response was "JUMP". I asked her what to do if I fall, and she said "we will just have to pick you up and see who has the biggest bruises". Overall in life I may have her beat when it comes to bruises, but she has me beat in sound advise, I made it off the curb on my own the other day without incident. I overcame the fear of the fear of falling without getting bruised!

I think that as long as I am not stupid, I may be able to realistically work with some of these irrational fears and turn them into healthy caution.

Neat eh?

Peace Out

P
Contact email keepinghopejourney@gmail.com

Heart in the fingertips?

"My dear Bagginses and Boffins, Tooks and Brandybucks, Grubbs, Chubbs, Hornblowers, Bolgers, Bracegirdles and Proudfoots (..... wrong speech but my hope was to get your attention by quoting Bilbo)

No all joking aside, it has now been a week and one day since I started the albuterol. Yesterday I upped the dose from 2mg once a day to 2mg twice a day, I still feel jittery, but it doesn't really bother me, I am not yet sure if it drives Tom insane, I assume he would let me know if it does. The other night while riding my bicycle before going to bed, I noticed that I had much better control over my legs and I was able to go faster than usual. I know, if anything, that this is a placebo effect, it cannot yet be a result of the albuterol, but it is progress and I hope it will keep coming. I know I will not be cured by doing this, but I have to keep trying, I have to know that I am doing everything I can to fight this disease.

I keep receiving a lot of positive feedback on my blog, especially my post on Dual Patriotism posted on July 4th, it apparently touched more people than I knew. The funny thing about that post is that it is the post I have spent the shortest amount of time writing. I was sitting on the couch drinking a cup of coffee (probably my third or fourth) while Tom was taking his shower and letting James out. I suppose that sometimes just letting your fingers do the walking, opens for direct access to your heart. I meant every word I wrote, but to me the dual patriotism post was nothing special, the only thing different was that I was not applying the usual filter, I let myself get caught off guard. I did not know that I had been caught off guard until I got the huge response to the post. I truly appreciate all the positive feedback I have received and I have never before felt so empowered, I touched a lot of people with very little effort.

I have since then put my filter back up. The fight I fight every day is not a fun fight, and I do not always have the positive attitude I attempt to share here, thus the need for a filter. Without the filter I would often be left feeling vulnerable, weak, and naked (and the last one is not a pretty picture). The current truth about this disease is that there is no cure, and even though my neurologist is hopeful that a treatment or cure will be around for me before it is to late, I have to be realistic about it, I am in for a rough ride. Running 150 mph with blinders on while yelling really loud is not a long term solution, the disease is here whether I want it to or not. This doesn't mean that I should not grab at the rays of hope I see, quite the opposite I need to run faster and jump higher, I just need to run and jump in the right direction.

But, sometimes I also need to stop and smell the roses, or as Tim McGraw sings I need to go skydiving. I need to remember to take in today and save up so I have enough to get me through tomorrow and the next day if needed, and I must allow myself to use of my surplus and let people know that I am using it if I have to. But guess what people; we all do, you never know when your life will all of a sudden take an unexpected turn, and if you don't have enough roses saved up, you could end up running out, and not know where to find them again!

After all, as Bilbo said to Frodo:

"It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to."

Remember to LIVE LOVE LAUGH HOPE (and stop to enjoy and smell the roses)


P

Contact email keepinghopejourney@gmail.com

Slowly coming to an Agreement? Part II

It is later in the day now, I finished part I this morning. I have the sniffles, and found out that it can be a side effect of albuterol. It is no big deal at all, nothing a kleenex can't take care of.

I ended Part I by mentioning the tug I felt in my heart last week. One of my favorite authors is CS Lewis, most of you probably know that he wrote the Chronicles of Narnia, but some of you may not know that he was also a devout Christian, and published several books on Christianity. Lewis (his friends called him Jack, with the number of his books I have read over the past year, I think that it will be ok if I call him Jack as well). Anyway, Jack was not always a Christian. He was raised as a Protestant in Northern Ireland, became an atheist while a teenager, only to become a Christian again when he was around 30. JRR Tolkien can be credited with part of the reason for Jack's conversion. Tolkien also happens to be one of my favorite authors.

I felt the now famous tug in my heart last week, but my brain is still fighting and trying to figure out what it was. It reminds me of the way way Jack described how he became a Christian again, he fought greatly up to the moment of his conversion and compared himself to a, "'...prodigal who is brought in kicking, struggling, resentful, and darting his eyes in every direction for a chance to escape.." . \

I am still very much kicking and struggling to find a way out, if my brain decides to make sense of all of this, what will that mean for me? will I be able to find a purpose in this life?

I have never denied that Jesus existed, there is simply too much historical proof of that. I thought that he was probably just a really good guy trying to help people out. However, Jack brought up a really good point in A Case for Christianity:

"I am trying here to prevent anyone from saying the really foolish thing that people often say about Him [Jesus Christ]: “I’m ready to accept Jesus as a great moral teacher, but I don’t accept his claim to be God.” That is the one thing we must not say. A man who was merely a man and said the sort of things Jesus said would not be a great moral teacher. He would either be a lunatic — on a level with a man who says he is a poached egg — or else he would be the Devil of Hell."

What Jack is saying here, is that you have to make a choice, there is no in between, either you accept that Jesus is the son of God, or you believe that he was a mad man! I still haven't figured out which I think he was. I never thought of him as a mad man as Jack wants me to but I am not quite sure I am ready to accept him as the Son of a God I am not 100% sure I believe in. It appears that I may be facing a little bit of a battle between my heart and my brain, my heart seems to slowly be coming to an agreement with the guy upstairs while my brain still says "hold the horses, this is a big step".

No matter what the outcome of my search ends up being, I have already benefited greatly from it. I have always loved reading, I read for enjoyment, I picture everything I read in my brain, because I have been so busy just reading for enjoyment and pretending to be a warrior or an elf or whatever else I read about, I have often missed important points or messages in the literature I was reading. I, for example, never pictured Aslan as a Jesus figure in the Chronicles of Narnia, I just liked Lucy and thought she was a pretty neat little girl. I have learned to read for more than just enjoyment, I now also read for information and understanding. I like it.

Sleep tight!

P

Contact email keepinghopejourney@gmail.com

Slowly coming to an agreement? Part I

Hey Y'all,

I am on day three of my albuterol, and really don't have much to say about it so far other than limiting my coffee intake in the morning to about one cup is a good idea! I am on a really low dose and don't really expect to feel anything for a little while. I noticed Yesterday that I was somewhat fidgety all day, but that is really nothing new as I have fidgety periods on and off. I got a new exercise bike a while ago, and finally got it out Yesterday, and I did really enjoy getting my heart rate up and feeling that I got a good workout. I will keep you all posted on how I feel etc.

I have decided to divide this post into two, if now three different posts, it will be long, and those of you who have no interest in my spiritual journey, may just want to stop reading now. If you you are still interested, get a cup of coffee or tea, and prepare yourselves for a marathon!

I had a really good conversation with one of the people that have inspired me to look more into this whole religion thing the other day, and I got some really nice answers to some of the questions I have had. I keep coming up with new questions, but I will return to that later. Most of my questions refer to the reformed view of Christianity, mainly the views expressed by John Calvin. This is mainly because most of the literature I have read so far has been of that view.

There are several reasons why I have resisted the idea of God most of my life, some of these have now been dispelled, and I feel that my heart may slowly be coming to an agreement with God. Slowly being the key here. I will describe my two main reasons, one is purely selfish, and one is more of an intellectual resistance. My selfish reason is that I have always thought that if there is a God, he should be this big cuddly guy with a white beard, who jumps in and makes everything right when the going gets tough. This is the God that is portrayed on TV, the God some people of faith tell you about when they explain their beliefs to you. There is a picture and poem that comes to mind I am sure most of you have seen it. It is called Footprints. In the poem, the narrator describes how he/she was walking next to God, the picture shows two set of footprints on a beach. However, the narrator then says that when the going got tough, only one set of footprints showed up in the sand. The narrator is disappointed in God for leaving him/her alone during the hard times. God's response in the poem is "that is when I was carrying you". I know a lot of people, who should have been carried, but who wasn't, a lot of people, who could have used the comfort of this cuddly old man, but who didn't get it, myself included. The selfish reason here is "if you are really that nice and caring, couldn't you just help me pick up my feet a little?, and if you are lifting my feet, could you please let me know so I know?"

The intellectual reasons I had for not believing in God was or are, that this simply does NOT make sense. Come on people we all know that people can't walk on water and all that other hokus pokus they try to make us believe, we all know that. If there is a God why doesn't he fix everything that is wrong in the world rather than have his son show off magic tricks on Earth?. Slowly my intellectual arguments appear to be peeled off like layers on an onion. I mentioned above, that most of the literature I have read so far is based on a Calvinist/reformed view, as are most of the conversations I have had. I also have a great Catholic source! One of the first things you will encounter when exploring Calvin is TULIP. I will explain how I understand TULIP, and why it in some ways have helped me make sense of Christianity.

TULIP is also called the five points of Calvinism, they are by no means touchy feely, and they may not make people feel good, but they make me feel better! TULIP in a very brief and simplified way, is an acronym for:

Total Depravity total depravity means that we are all born selfish, and we are unable to choose to serve God on our own, therefore God chooses whom amongst us will be saved! None of us are good, only God is good!

Unconditional Election This basically says that God chooses who he "saves" it has nothing to do with merit.

Limited AtonementThis is a somewhat controversial point, well I guess they all are if you think about it, but this one may strike non Calvinists as particularly controversial. Limited atonement means that Jesus only died for the elect few, and not for everybody.

Irresistible Grace This point states that once you have been chosen you will be unable to resist God's Grace. The Holy Spirit will be the one who makes sure that your heart and brain is in on the deal.

Perseverance of the Saints Means that there is nothing you can do to lose your salvation.

A while I ago I was sick and tired of having MD, I still am, every single day and then some. I have several times mentioned how I kept looking for a reason, how I kept looking for somewhere to place the blame, and how I time after time failed. I decided that if there is nowhere to place blame, other than in nature, fighting would really not be worth it in the long run.

During the conversation the other day, I asked how do you know if you are one of the elect, as the logical part of me would say that I am not one of them. The answer according to the person I was speaking to was that to him, I am a great example of Total Depravity. I grew up in a country that does not put much of an emphasis on religion, in a family that did not practice Christianity other than by celebrating the holidays.

I rejected Christianity because some people are too preachy, there are who want to save me without me asking to be saved. Despite these rejections, something sparked the interest in Christianity, and the right people just happened to be in the right place at the right time. By the right people, I mean intelligent, spiritual people, who have been able to guide me and help me in finding answers to some of all of my questions.

My next question in this connection was then "Do you think you were planted?" "what if I had gone somewhere else the day I ran into you?". He thought he probably was "planted", as are all the other people I continuously torture with my endless stream of naive questions.

The answer to my question about whether or not I am one of the chosen ones, obviously sparked more questions from me, such as why would we even try to be good if it doesn't matter? The answer I got was that the incentive to be "good" (in the human definition of good not God's), is that once you understand the gift Jesus/God has given you, you will do whatever it takes to please Him. Not because you have to but out of gratitude. I am not yet sure what the gift is, but I am sure it may have to do with the little tug I felt in my heart the other day!.

I will stop for now, if I haven't already lost you, I am impressed, and I hope you will take a look at part II as well!

P

Contact email keepinghopejourney@gmail.com

BigMac with chicken

Imagine going through the drive through at McDondald's, ordering a BigMac only to find out when you eat it, that it has chicken in it. What would you think about that? Have you ever met somebody who constantly invades your personal space and gets into your business without an invitation?

I spend most of my weekday mornings exercising in a hot water pool, there are plenty of benefits to exercising in water, the fact that the water takes away most of your body weight makes the workout effective but yet low impact. The pool is an awesome place to go, I have made a lot of friends both young and old. What I like about the pool is that we are all in some way or form in the same boat. We either have a disability or injury that keeps us from going to Gold's. However, the pool is also a very intimate place, we are after all half naked sharing a huge bathtub. Whenever you have more than one person in one place, issues are bound to arise. I will, however, have to say that considering how many people come and go, they are surprisingly few and far between. We are all very careful to keep evil gossip at a minimum.

Yesterday I had my first really "ugly" experience in the pool. I think I managed to stop the situation before it got out of hand by simply removing my self from it. I left earlier than I normally would, but there are really very few places to hide in a pool unless you keep your head under water, and that is not a long term solution.

In one of my first posts I mentioned how unsolicited advice is one of my biggest pet peeves unless you are a close friend, family member, or Dr. To me the unsolicited advice is unwelcome regardless of whether it is about how best to manage my MD or how to brush my teeth, keep it to yourself unless asked. Well, some people appear to have a problem understanding that, and also with understanding when to be quiet. The same type of person for some reason also has problems understanding that it is rude to bud in on other peoples' conversations and take over. There is a person at the pool, who repeatedly gets in everybody's business, it really doesn't matter what the issue is, she always has either a better solution to whatever you are talking about, or a sob story involving herself and how she has been mistreated. I have several times (almost daily) just smiled and said sure when she has gone to far. She is probably just lonely.

Yesterday I was speaking to a friend about how I was tired because of an added work load at work. Ms B (busybody), decided to bud in and proceed to tell me how I could improve on the situation. I told her that her solutions really weren't options as we have certain procedures and rules to follow, and that the company I work for is a franchise business, so even if I could think of a better way of doing things, it simply wouldn't be an option.

Anyway, she would NOT let it go, she kept trying to discuss it with me. I finally said that I no longer wanted to discuss the issue as there was nothing to discuss. She still did not get it, and my blood slowly started to boil. When I had had enough, I left the pool without making a scene, I was rapidly approaching a place where I wanted to rip her head off.

I feel good about myself for not letting my temper get the best of me in a public place, but I do feel bad about not going back to face her today. I need a plan that will restore peace, and keep us both happy before that will happen, she will not be the one to come up with it. I harbor no hard feelings, I just pity her. All she did was try to get me to sell a BigMac with chicken, and how could she know that is not a good idea?


Lunch anyone?

P

Contact email keepinghopejourney@gmail.com

Twice in two days...

Finally finally finally.... This morning I got a call from my neurologist's office, he is now convinced that my heart beats, and that my liver and kidneys work the way they should. I can pick up my prescription any time today! I will probably not begin the experiment until Saturday morning. Albuterol supposedly has the same effect as a shot of espresso, so I want to know how I react to it before having to drive etc. I will, however, keep you posted, I have been known to change my mind in the past!

Those of you, who read my post from Yesterday, may have gathered that I have a certain passion for MD research. I have decided to do something this year I have never done before. I have created a website through the MDA, raising money for the MDA. It is in connection with the Laborday Telethon. I do NOT want anyone to feel obligated to contribute, we all have enough to spend our money on, but any donation would be greatly appreciated. The website has the following address https://www.joinmda.org/MyEvent/MyHomepage/tabid/171892/Participant/tom_pernille/Default.aspx There is also a link under Websites of Interest.

It has been a while since I have written anything about my spiritual search. I have not given up, far from it, nor have I forgotten about it. I am currently reading a book by a pastor called Tim Keller. He leads a large congregation in New York. He, just like Sproul, has a way with words, that makes you understand, and wish for more. When I was reading before going to sleep last night, I felt a tug at my heart for the first time. I did not have a moment of transformation or anything like that, but I had a feeling that if, Jesus really is the son of God (or actually God), and he died on the cross for our sins, he really is a pretty cool guy. I understood that if there is a God, we are now dealing with a God, who not only knows about our sufferings, he has suffered with us, and paid the ultimate price so we don't have to. Pretty neat eh?

Peace

P



Contact email keepinghopejourney@gmail.com