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
Thursday, October 21, 2010
Sunday, October 17, 2010
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
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
Wednesday, October 6, 2010
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
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
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