Right now Jesus, or in this case, a much younger Max Von Sydov, it entering Jerusalem. I have never actually seen the movie The Greatest Story Ever Told, but appropriately enough it is being shown on TV right now. We picked it up right when Jesus entered Jerusalem on the donkey. This morning, at church, I once again started thinking, I am not quite sure about this whole thinking thing, deep thoughts seem to lead to yet deeper thoughts and so on. Todd, who preached this morning, based his sermon on the word empty, and the importance of the word empty in the Christian faith. Without the empty tomb, there would be no Christianity as Christ would have been a mere human, and not who he claimed he was. It is really all very interesting, as it is because of the empty tomb, that I now feel very full.
I am full at several different levels, my stomach is definitely full I can, however, not pin that one on Christ, I take complete responsibility for overeating. But, my brain is also full. I have learned so much over the past several months, and I have met so many new and inspiring people, and there are times when I really struggle with putting it all together. I feel very divided, I feel and see how Christ works in people, and I see how he has placed a lot of things right there for me to grab so that I too will be able to feel him, and understand his unconditional love for me. But as I mentioned, I do feel very divided, the best way of describing it is probably the feeling of being two different people at the same time. There is a part of me, that really really really wants to accept that there is a reason why I have MD, but also that I may never know that reason. The part knows that God did not give me this out of malicious intent, but because there is a purpose for me to fulfill. This part is also a very rational being, understanding, that to achieve the best possible quality of life, I must choose a different battleground, the battleground Christ chose for me. However, the other part, the irrational and unfortunately also dominating part of me, has no intention of switching battlegrounds, it only has one goal, namely for the MD to go away at any cost, nothing more, nothing less, and it intends on fighting that fight forever. The fight, as it is now, can only have one outcome, and it is not a favorable one neither for the rational me nor for the irrational me. But yet I cannot let go. I pray daily, that Christ will help me, that he will show me how, and where he wants me to go. It is really stupid as he has already shown me, but unfortunately, the irrational part, is just acting like a spoiled two year old holding her ears while screaming loudly and pretending not to hear, while also drowning out the voice making it impossible for the rational me to follow directions.
Why do I have such a hard time accepting the hand I was dealt? Why does my brain refuse to listen to the messages that are so clearly communicated to me? Christ, has given me so much, and he keeps giving, but yet I am not satisfied, as the things that matter most to me are things I can't have, while I don't use and appreciate the gifts I have been given. Is this where free will comes into play? I can choose to take the path lined up for me by Christ, a difficult path, as MD is no walk in the park with or without Christ, but a path where I none the less use the gifts I have been given, and have the comfort of knowing that Christ is right there beside me?, or I can choose to take the path I am currently taking, where I am creating additional obstacles to the already difficult walk in the park.
The movie is over, Jesus rose from the dead, he kept his promise, he did it for me and for all of you, I cannot even begin to imagine what he went through, and here I am, sitting comfortably on my couch, with a loving husband, a whining dog (he thinks that whining gets him treats, not sure where he learned that???), a sleeping cat, and a very full belly, and think that it is OK for me to complain. What is wrong with that picture? Why does the irrational me keep knocking down the rational me?
I hope you all had a wonderful Easter, I did, I was lucky enough to attend a beautiful outdoors service this morning, the rest of the day was spent in the great company of new and old friends, and the Easter Bunny even remembered me this year, what else can a girl ask for?
P
Contact email keepinghopejourney@gmail.com
Sunday, April 24, 2011
Sunday, April 17, 2011
Goals
According to Wikipedia, one definition of the word "Goal" is "A goal or objective is a desired result a person or a system envisions, plans and commits to achieve—a personal or organizational desired end-point in some sort of assumed development. Many people endeavor to reach goals within a finite time by setting deadlines.
We all set different goals in life, some people use the words goals and dreams in the same context, or even as symonyms, and for some that may very well be a good thing. "My dream is to become a famous soccer player, and my goal is to do it by the time I turn 20". See if you are a reasonably coordinated, able bodied, athletic person, the combination of "dream and goal" may not be a bad idea at all. Goals and dreams have to be realistic. The reality of life is probably that most of us at some point have had to alter our goals, dreams, or both.
This weekend was the annual Sportsability event for Florida Disabled Outdoors Association. (check out fdoa.org for more info). Sportsability is an awesome event, that offers people with all kinds of disabilities the opportunity to try things they never dreamed of trying before. It allows for people, who may not otherwise get out a lot, to come out and enjoy nature, and to socialize. The reason why I am writing about goals and dreams is that there are infinitely many types of disabilities, some physical, some mental, some progressive, some stationary, and some that affect only one body part while the rest of the body is not affected. These different disabilities all require different goals.
I met an extremely inspirational person this weekend. She was the key note speaker at the opening banquet Thursday night, as well as at an exhibit Friday. I had the chance not only to enjoy her presentation in which she told us all how she had overcome her disability to become an Ironman (no, not the cartoon character, but a Triathlete), but I also had the opportunity to speak to her for a little while both Thursday and Friday, what an incredible person!. Her disability is, that at age 6 or 7 she had her left leg amputated. The challenges she is facing every single day are tremendous, and yet she gets up with her head held high, sets goals, and reaches them somehow or another. It took her years to train for her ironman as she did not know how to ride a bike, or how to swim, she had to learn both, and managed to do so. She did not finish the ironman in her first attempt as she ran out of time, but on her second attempt she was successful. What a relentless fighter!
I couldn't help but think about the similarities and differences between the two of us. In many ways we are very similar, I have a feeling that we both have a slight hint of stubbornness, none of us like being told that we can't do something, and we are very close to each other in age. However, the differences are what really made me think. Despite missing a leg, the rest of her body does not have any challenges, so once she solved the swimming/biking issue, it turned into a question of training, a lot of training I am sure. However, she was able to set a goal, have a dream, and achieve both. When you suffer from a progressive degenerative disease, your goal setting is totally different, and to be honest, dreams are something of the past, all that ever happens is that they shatter! Goal setting for people with MD or other progressive diseases, often become goals of just making it through the day, the week, the month, the year without a complete loss of mobility, independence, and (this may sound harsh but to me it feels very real) human dignity. Those goals aren't goals, they are the harsh reality, when I go to bed every night, I fear that the next morning may be the morning where I can no longer do _____ (fill in the blank). I know we could all be hit by a truck tomorrow and become disabled, or even die, and I have been told that the fear I feel every night (and day) is a fear I should let go of. But, I am pretty certain I have mentioned something similar to this before, but most people have a fairly reasonable chance of not being hit by the infamous truck, and thus they are able to go about their day and set their goals and follow their dreams.
When being diagnosed with a disease, such as MD, you have to learn to reevaluate your goals and to recreate dreams, but it is hard, because we always want what we can't have. My only dream and goal in life is to beat MD, it is actually an all or nothing proposition, and I will more than likely never be able to achieve neither the goal nor the dream. Creating new goals and dreams is a lot harder than you might imagine, especially because the grass is always greener on the other side. I have always enjoyed helping people, and I have been encouraged to follow that dream, but I tend to put myself down, simply because there will always be an able bodied person out there I will not be able to compete with simply because 60% (or more) of his/her time is not spent on just "being". By being I mean that it is not spent on taking forever to walk from a parking lot into a store, or putting on shoes, it takes me upwards of five minutes if Tom is not around! (I like flip flops by the way), I think you all get the picture here. Setting goals and creating dreams is just incredibly hard when most of your time is already accounted for, and most of the rest (at least that is the case with me) is spent on worrying about what's next!
I am in the process of working on getting rid of my all or nothing mentality, but I am not very good at it, it may be the hint of stubbornness mixed with some strange idea I have in my head that in order for me to set and reach goals, and to follow dreams I will have to be able bodied. I don't know. Either way, goal setting is different for all of us, and if I were to only set realistic goals I might as well curl up into a little ball and roll over in a corner.
Giving my life over to Christ is probably the only answer, and I do try, but I think my human side (or my flesh as the Apostle Paul, and Todd so eloquently express it), is very powerful. My desire to beat MD has basically become a form of idolatry that should be fought. But tonight in church, Todd said that fighting it is really not the most important issue as once you really give up your life, the fight will no longer be necessary.
This should console me, but it doesn't always, as giving my life completely to the will of God, would bind me to accept and embrace the life I have been given, and that, my dear friends, can at times be harder than you might think.
P
Contact email keepinghopejourney@gmail.com
We all set different goals in life, some people use the words goals and dreams in the same context, or even as symonyms, and for some that may very well be a good thing. "My dream is to become a famous soccer player, and my goal is to do it by the time I turn 20". See if you are a reasonably coordinated, able bodied, athletic person, the combination of "dream and goal" may not be a bad idea at all. Goals and dreams have to be realistic. The reality of life is probably that most of us at some point have had to alter our goals, dreams, or both.
This weekend was the annual Sportsability event for Florida Disabled Outdoors Association. (check out fdoa.org for more info). Sportsability is an awesome event, that offers people with all kinds of disabilities the opportunity to try things they never dreamed of trying before. It allows for people, who may not otherwise get out a lot, to come out and enjoy nature, and to socialize. The reason why I am writing about goals and dreams is that there are infinitely many types of disabilities, some physical, some mental, some progressive, some stationary, and some that affect only one body part while the rest of the body is not affected. These different disabilities all require different goals.
I met an extremely inspirational person this weekend. She was the key note speaker at the opening banquet Thursday night, as well as at an exhibit Friday. I had the chance not only to enjoy her presentation in which she told us all how she had overcome her disability to become an Ironman (no, not the cartoon character, but a Triathlete), but I also had the opportunity to speak to her for a little while both Thursday and Friday, what an incredible person!. Her disability is, that at age 6 or 7 she had her left leg amputated. The challenges she is facing every single day are tremendous, and yet she gets up with her head held high, sets goals, and reaches them somehow or another. It took her years to train for her ironman as she did not know how to ride a bike, or how to swim, she had to learn both, and managed to do so. She did not finish the ironman in her first attempt as she ran out of time, but on her second attempt she was successful. What a relentless fighter!
I couldn't help but think about the similarities and differences between the two of us. In many ways we are very similar, I have a feeling that we both have a slight hint of stubbornness, none of us like being told that we can't do something, and we are very close to each other in age. However, the differences are what really made me think. Despite missing a leg, the rest of her body does not have any challenges, so once she solved the swimming/biking issue, it turned into a question of training, a lot of training I am sure. However, she was able to set a goal, have a dream, and achieve both. When you suffer from a progressive degenerative disease, your goal setting is totally different, and to be honest, dreams are something of the past, all that ever happens is that they shatter! Goal setting for people with MD or other progressive diseases, often become goals of just making it through the day, the week, the month, the year without a complete loss of mobility, independence, and (this may sound harsh but to me it feels very real) human dignity. Those goals aren't goals, they are the harsh reality, when I go to bed every night, I fear that the next morning may be the morning where I can no longer do _____ (fill in the blank). I know we could all be hit by a truck tomorrow and become disabled, or even die, and I have been told that the fear I feel every night (and day) is a fear I should let go of. But, I am pretty certain I have mentioned something similar to this before, but most people have a fairly reasonable chance of not being hit by the infamous truck, and thus they are able to go about their day and set their goals and follow their dreams.
When being diagnosed with a disease, such as MD, you have to learn to reevaluate your goals and to recreate dreams, but it is hard, because we always want what we can't have. My only dream and goal in life is to beat MD, it is actually an all or nothing proposition, and I will more than likely never be able to achieve neither the goal nor the dream. Creating new goals and dreams is a lot harder than you might imagine, especially because the grass is always greener on the other side. I have always enjoyed helping people, and I have been encouraged to follow that dream, but I tend to put myself down, simply because there will always be an able bodied person out there I will not be able to compete with simply because 60% (or more) of his/her time is not spent on just "being". By being I mean that it is not spent on taking forever to walk from a parking lot into a store, or putting on shoes, it takes me upwards of five minutes if Tom is not around! (I like flip flops by the way), I think you all get the picture here. Setting goals and creating dreams is just incredibly hard when most of your time is already accounted for, and most of the rest (at least that is the case with me) is spent on worrying about what's next!
I am in the process of working on getting rid of my all or nothing mentality, but I am not very good at it, it may be the hint of stubbornness mixed with some strange idea I have in my head that in order for me to set and reach goals, and to follow dreams I will have to be able bodied. I don't know. Either way, goal setting is different for all of us, and if I were to only set realistic goals I might as well curl up into a little ball and roll over in a corner.
Giving my life over to Christ is probably the only answer, and I do try, but I think my human side (or my flesh as the Apostle Paul, and Todd so eloquently express it), is very powerful. My desire to beat MD has basically become a form of idolatry that should be fought. But tonight in church, Todd said that fighting it is really not the most important issue as once you really give up your life, the fight will no longer be necessary.
This should console me, but it doesn't always, as giving my life completely to the will of God, would bind me to accept and embrace the life I have been given, and that, my dear friends, can at times be harder than you might think.
P
Contact email keepinghopejourney@gmail.com
Monday, April 11, 2011
Et vink med en vognstang
Et vink med en vognstang is a Danish saying I struggle a little with translating, I put it in google translate and it came out as "a hint of a pole", not exactly what I was looking for. I will do my best to explain what the saying means, and why I have chosen to title this entry "Et vink med en vognstang". Loosely translated, you can consider et vink med en vognstang a combination of "not seeing the woods for trees and being oblivious to something that is clearly pointed out to you".
In my last post I wrote about the loss of our very good friend, Mike. There was never any doubt in our minds that we had to go down to Boca Raton for the memorial service. Mike passed away Thursday, and the details of the memorial service were not made public until Friday. If the geography of Florida is not your strong suit, I can tell you that the distance from our house to the funeral home is about 420 miles. We called a friend of ours to ask if we could stay with her while down there, which was no problem. Later that same day, we found out that she lives on the third floor without an elevator. I don't think I need to explain the issues with that. However, going to Mike's memorial service was bigger than me, or us, and Tom and I agreed that we could make it happen. Tom could help me up three flights of stairs. Saturday morning while on our merry (or somber) way towards South Florida, I start getting anxious and stressed about the stairs. I got some coupon books at a rest area near Orlando and started looking for cheap hotels. The price for a night in a dump in Palm Beach County is about the price of a four star hotel in Tallahassee. We had not budgeted for a hotel, and my stress levels increased more and more. Suddenly the stairs were bigger than Mike, and I lost sight of what was important this weekend.
We knew that some of our friends from Tally were going to be in the Palm Beach area this past weekend, and when they found out that we would be going south as well, we agreed that if there was time we should meet up, nothing was agreed upon due to all the short notice. While I was stressing more and more about making it up three flights of stairs, or getting a hotel room we could not afford, I got a text message from our friend, asking us to join them at the party they were at. We decided that might not be a bad idea as we otherwise would have just sat in an empty one bedroom condo feeling miserable while eating Little Caesar's pizza. I said we would come by, and also asked if he would mind looking up cheap hotels on his iphone, so we could find a place to stay. At that point the stairs were completely out of the question, I just could not even imagine making an attempt. The response back was, that they could accommodate us. We went to the party, which was great, free food, lots of alcohol, and friendly people, a way of getting our minds off of Sunday. We got to stay at my friend's daughter's one story house! Our problems were taken care of when we needed them taken care of the most.
The memorial service on Sunday afternoon was beautiful, Mike was celebrated as the amazing person he was. The service also gave me reason and opportunity to reflect on my life. Mike was the person who "outed" me last year when I started writing my blog. He was always so open and honest about his fight, and his feelings etc. He inspired me to open up to the world about my struggle with MD etc
I am apparently a little dense, as it took until late this afternoon before I realized that God gave me a "vink med en vognstang" this weekend, that he played a huge part in making what could have been a disaster into what it should be, namely remembering Mike. He taught me to redirect my focus towards what is really important. When I started to loose focus on our way down, I got the text message, solving all of our problems at once, when we "socialized" after the memorial service, I was able to have a regular conversation with people without being embarrassed or nervous, I was just a person speaking to old friends, not an anxious person trying to pretend that everything was ok.
I am so incredibly sad that Mike had to die, but God made it that way, but that is not all, God also used Mike's life and death as a teachable moment for me. Mike was God's tool to help me start to recover from my turtleitis, he used Mike to show me what it means to fight, and last but not least, he used this weekend, to "smack me upside the head with a pole". He helped me get into the "right" mindset, that this was about honoring Mike's life, and not about me and three flights of stairs. However, when my confidence and focus started wavering, he did take my hand and sent the help I needed in the form of a text message.
P
Contact email keepinghopejourney@gmail.com
In my last post I wrote about the loss of our very good friend, Mike. There was never any doubt in our minds that we had to go down to Boca Raton for the memorial service. Mike passed away Thursday, and the details of the memorial service were not made public until Friday. If the geography of Florida is not your strong suit, I can tell you that the distance from our house to the funeral home is about 420 miles. We called a friend of ours to ask if we could stay with her while down there, which was no problem. Later that same day, we found out that she lives on the third floor without an elevator. I don't think I need to explain the issues with that. However, going to Mike's memorial service was bigger than me, or us, and Tom and I agreed that we could make it happen. Tom could help me up three flights of stairs. Saturday morning while on our merry (or somber) way towards South Florida, I start getting anxious and stressed about the stairs. I got some coupon books at a rest area near Orlando and started looking for cheap hotels. The price for a night in a dump in Palm Beach County is about the price of a four star hotel in Tallahassee. We had not budgeted for a hotel, and my stress levels increased more and more. Suddenly the stairs were bigger than Mike, and I lost sight of what was important this weekend.
We knew that some of our friends from Tally were going to be in the Palm Beach area this past weekend, and when they found out that we would be going south as well, we agreed that if there was time we should meet up, nothing was agreed upon due to all the short notice. While I was stressing more and more about making it up three flights of stairs, or getting a hotel room we could not afford, I got a text message from our friend, asking us to join them at the party they were at. We decided that might not be a bad idea as we otherwise would have just sat in an empty one bedroom condo feeling miserable while eating Little Caesar's pizza. I said we would come by, and also asked if he would mind looking up cheap hotels on his iphone, so we could find a place to stay. At that point the stairs were completely out of the question, I just could not even imagine making an attempt. The response back was, that they could accommodate us. We went to the party, which was great, free food, lots of alcohol, and friendly people, a way of getting our minds off of Sunday. We got to stay at my friend's daughter's one story house! Our problems were taken care of when we needed them taken care of the most.
The memorial service on Sunday afternoon was beautiful, Mike was celebrated as the amazing person he was. The service also gave me reason and opportunity to reflect on my life. Mike was the person who "outed" me last year when I started writing my blog. He was always so open and honest about his fight, and his feelings etc. He inspired me to open up to the world about my struggle with MD etc
I am apparently a little dense, as it took until late this afternoon before I realized that God gave me a "vink med en vognstang" this weekend, that he played a huge part in making what could have been a disaster into what it should be, namely remembering Mike. He taught me to redirect my focus towards what is really important. When I started to loose focus on our way down, I got the text message, solving all of our problems at once, when we "socialized" after the memorial service, I was able to have a regular conversation with people without being embarrassed or nervous, I was just a person speaking to old friends, not an anxious person trying to pretend that everything was ok.
I am so incredibly sad that Mike had to die, but God made it that way, but that is not all, God also used Mike's life and death as a teachable moment for me. Mike was God's tool to help me start to recover from my turtleitis, he used Mike to show me what it means to fight, and last but not least, he used this weekend, to "smack me upside the head with a pole". He helped me get into the "right" mindset, that this was about honoring Mike's life, and not about me and three flights of stairs. However, when my confidence and focus started wavering, he did take my hand and sent the help I needed in the form of a text message.
P
Contact email keepinghopejourney@gmail.com
Thursday, April 7, 2011
Sushi and Memories
Dear Mike,
It is with a very heavy heart that I write this blog entry. Today the world lost an amazing guy, a wife lost her husband, and a little boy lost his father.
When I initially started this blog, I wrote about you, how you were fighting brain cancer. I wrote about the inspiration you offered to me, and to the world. Yow were so open about your fight and your determination to dance at, Cole's, wedding. Mike, you will not be dancing at Cole's wedding, well, at least we will not see you dance but I am, however, convinced that wherever you are going, you will be dancing with tears of joy in your eyes. I know you will be proud of him, Kim will take good care of him.
You and Kim, were our first friends when we moved to Naples in 2002, the first time we met, we went out for pizza in North Naples, I had ham and shrimp on my pizza, I remember it clearly because ham and shrimp pizzas were not abundant in Omaha at the time. After our initial pizza date we went on many more dates. There is one date I remember particularly well, Kim was pregnant with Cole, so it must have been about seven years ago. We went to a little family run sushi place somewhere in the northern part of Bonita Springs. I am not sure if we got there late, or if we just stayed for a very long time, but all of a sudden all the people working in the restaurant got out a karaoke machine and started singing karaoke in Japanese. They encouraged us to sing along, but since our Japanese was kind of rusty, we were content with listening, we had a great time. It was probably one of those moments, where people should have been there to really get the humor, it was definitely more entertaining than enjoyable.
Mike, you did something I really struggle with, you walked the walk. What I mean is that life really threw some curve balls at you, but they just bounced off of you and you kept on fighting. I am sure you and Kim had some really tough moments, and I don't think you will ever be prepared for someone as young as you to pass away. But none the less, I am sure you did it with dignity and love as you did everything else in life.
Mike, you were the perfect picture oflife, you hungered for it, and your entrepreneurial spirit made you get out there day after day working to create the best life possible for Kim and Cole. Kim and Cole were always number one in your life, very rarely do you see such dedication and love, it just radiated from all of you.
Mike, as you know, I am new to this whole God thing, but I will be praying for Kim, Cole, and the rest of your family, well for the whole world. I cry because of the loss I personally feel, Mike, you were instrumental in me starting my blog, and letting people know about my MD, I will be forever grateful to you for that!
Psalm 119:28 (NASV) is the closest I can come to telling you how I feel " My soul weeps because of grief; Strengthen me according to Your word."
Mike, the world has lost an amazing person, but Heaven has gained a new resident. Please wait for us, watch over us, and welcome us when we see you again, I am always game for sushi and ham and shrimp pizza.
God Bless you all!
P
Contact email keepinghopejourney@gmail.com
It is with a very heavy heart that I write this blog entry. Today the world lost an amazing guy, a wife lost her husband, and a little boy lost his father.
When I initially started this blog, I wrote about you, how you were fighting brain cancer. I wrote about the inspiration you offered to me, and to the world. Yow were so open about your fight and your determination to dance at, Cole's, wedding. Mike, you will not be dancing at Cole's wedding, well, at least we will not see you dance but I am, however, convinced that wherever you are going, you will be dancing with tears of joy in your eyes. I know you will be proud of him, Kim will take good care of him.
You and Kim, were our first friends when we moved to Naples in 2002, the first time we met, we went out for pizza in North Naples, I had ham and shrimp on my pizza, I remember it clearly because ham and shrimp pizzas were not abundant in Omaha at the time. After our initial pizza date we went on many more dates. There is one date I remember particularly well, Kim was pregnant with Cole, so it must have been about seven years ago. We went to a little family run sushi place somewhere in the northern part of Bonita Springs. I am not sure if we got there late, or if we just stayed for a very long time, but all of a sudden all the people working in the restaurant got out a karaoke machine and started singing karaoke in Japanese. They encouraged us to sing along, but since our Japanese was kind of rusty, we were content with listening, we had a great time. It was probably one of those moments, where people should have been there to really get the humor, it was definitely more entertaining than enjoyable.
Mike, you did something I really struggle with, you walked the walk. What I mean is that life really threw some curve balls at you, but they just bounced off of you and you kept on fighting. I am sure you and Kim had some really tough moments, and I don't think you will ever be prepared for someone as young as you to pass away. But none the less, I am sure you did it with dignity and love as you did everything else in life.
Mike, you were the perfect picture oflife, you hungered for it, and your entrepreneurial spirit made you get out there day after day working to create the best life possible for Kim and Cole. Kim and Cole were always number one in your life, very rarely do you see such dedication and love, it just radiated from all of you.
Mike, as you know, I am new to this whole God thing, but I will be praying for Kim, Cole, and the rest of your family, well for the whole world. I cry because of the loss I personally feel, Mike, you were instrumental in me starting my blog, and letting people know about my MD, I will be forever grateful to you for that!
Psalm 119:28 (NASV) is the closest I can come to telling you how I feel " My soul weeps because of grief; Strengthen me according to Your word."
Mike, the world has lost an amazing person, but Heaven has gained a new resident. Please wait for us, watch over us, and welcome us when we see you again, I am always game for sushi and ham and shrimp pizza.
God Bless you all!
P
Contact email keepinghopejourney@gmail.com
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