A friend of mine who also has Multiple Sclerosis shared a conversation with me that he'd had with another person living with a different disability. During the conversation he asked her that if a cure for her disease was discovered, would she want to take that step. Would she want to be cured? Her answer to the question was no. She cited several reasons including that she feels that her friendships would change, her dedication would change, her self out-look would change, her life's purpose would change, her self-esteem would change and that the way others would view her would change if she no longer had her disability. When he finished explaining her reaction to his question he asked me what my thoughts were both on curing my MS and if I were able to get a new flesh and bone leg.
I do not agree with the person my friend was talking about. In fact, I very strongly disagree with the majority of her assessment of what would happen if they could cure her disease or any disease for that matter. I’m not a big believer in regret and try to live my life without regret. Whether a person is ill or not, it is the events in our pasts, good and bad alike, that make us the people we are today. It's not our illnesses or disabilities.
I am who I am and where I am at this stage in my life because of what I’ve had to go through in regards to having both a chronic, progressive, debilitating neurological disease and having had to fight for my life repeatedly against infections in my leg which ultimately led to amputation. People think I’m crazy when I say that in many ways I am grateful for these struggles. Do I wish that it were possible to go back in time and erase whatever it is that caused me to develop MS in the first place? Of course I do. I would seize the opportunity to be cured in a heartbeat. Do I wish I could go back in time and erase whatever it is that caused me to be so susceptible to serious infections in my leg? Yes, of course. However, I can’t go back and erase those things. The only thing I can do is continue moving forward, learn from my experiences and hope that a cure for Multiple Sclerosis comes soon and when it does, I will seize the opportunity. I don’t believe that being cured of a disease negates what a person has gone through because of that disease in any way.
The life lessons that I have learned over the years are in large part due to my medical history. I have learned so much about myself, about the people in my life, about what’s important and what’s not important, and what an incredibly precious gift life is. I truly believe that the way I view the world around me wouldn’t drastically change if I no longer had Multiple Sclerosis and I don’t think that my friendships would radically change either. I would still see the world through the eyes of someone who unfortunately was dealt some very hard hands in this game we call life, someone who has had to make some very tough calls, and someone who has been given the gift of fully realizing just how precious every hour of every day really is. When it comes to friendships the same rules apply to those who have never battled serious illness and those who have. If someone walks away instead of standing beside you when you need them, they were never really a friend to begin with.
I think that I’ve made it clear that I would, without a doubt, seize the opportunity to live a life without Multiple Sclerosis but I seem to have to skipped over the question of whether or not I would seize the opportunity to live a life with two flesh and bone legs again. The reason for this is simple. We do not know why infection has seized control of my right leg so there'd be no guarantee that if I were to be given a new flesh and bone leg that this same cycle of hell I'm living in now wouldn't start all over again. That is a hell I simply could not live through from the beginning again. Also it would have to be some kind of transplant and not only are we not medically there yet to make that leap and make it work, any recipients would have to be on rejection medications for the remainder of their lives and the risk of infection even with a good immune system is still there. My personal risk of infection is just far too high. There is a defect in my immune system somewhere and without fixing that, which can't be done currently, my infection problem would remain. Comparing MS to being an amputee is like comparing apples and oranges. Life as an amputee can return to an incredibly normal state with the right treatment. The same can not be said for MS.
I think that one of the biggest differences between me and the person that my friend was talking to is that I don’t view myself or identify myself as an amputee and person living with Multiple Sclerosis. Neither one of those things define me as a person. They never have and they never will. They are simply two small parts of the whole. I am far more than a person living with disabilities. I’m a writer, a photographer, an artist, a daughter, a sister, a friend, a neighbor and so much more. Those are the things that define me the most. When my friends and my family look at me those are the things they see, not a person with disabilities. They see me for who I am and they treat me as such and that is the way I want it.
I do not know the person my friend had this conversation with but I suspect that disability plays a big role in her life. I suspect that it plays a far bigger role in defining who she is than mine do in defining who I am. I suspect that if she were cured she is one of those people who simply would no longer know what to do with herself. I could be way off target. I only reach these conclusions because of the way she answered the question. If she thinks her friendships would change it makes me think that the majority of her friendships are based on disability. If she thinks her self out-look would change it makes me think that her disability is in a very big way, how she defines herself.
We are all different which is what makes humanity so interesting. There is no right way and no wrong way to be when living with a disease. Everyone reacts differently and everyone is allowed to tackle it in whichever way is best for them. My way doesn’t make me any better than people who choose to tackle it the way she has and her way doesn’t make her any better than the people who choose to tackle it the way that I do. Each of us has the free will to choose how we play the hands we are dealt in life. We can choose to fold or we can choose to stay in the game. In my eyes, saying no to a cure for any disease is folding and foolish and though I respect the right of this girl and others like her to reject a cure, I will never understand it. Personally, my door will always be open wide for the cure for Multiple Sclerosis and of course for the infections that without a lasting cure will end my life.
I am who I am and where I am at this stage in my life because of what I’ve had to go through in regards to having both a chronic, progressive, debilitating neurological disease and having had to fight for my life repeatedly against infections in my leg which ultimately led to amputation. People think I’m crazy when I say that in many ways I am grateful for these struggles. Do I wish that it were possible to go back in time and erase whatever it is that caused me to develop MS in the first place? Of course I do. I would seize the opportunity to be cured in a heartbeat. Do I wish I could go back in time and erase whatever it is that caused me to be so susceptible to serious infections in my leg? Yes, of course. However, I can’t go back and erase those things. The only thing I can do is continue moving forward, learn from my experiences and hope that a cure for Multiple Sclerosis comes soon and when it does, I will seize the opportunity. I don’t believe that being cured of a disease negates what a person has gone through because of that disease in any way.
The life lessons that I have learned over the years are in large part due to my medical history. I have learned so much about myself, about the people in my life, about what’s important and what’s not important, and what an incredibly precious gift life is. I truly believe that the way I view the world around me wouldn’t drastically change if I no longer had Multiple Sclerosis and I don’t think that my friendships would radically change either. I would still see the world through the eyes of someone who unfortunately was dealt some very hard hands in this game we call life, someone who has had to make some very tough calls, and someone who has been given the gift of fully realizing just how precious every hour of every day really is. When it comes to friendships the same rules apply to those who have never battled serious illness and those who have. If someone walks away instead of standing beside you when you need them, they were never really a friend to begin with.
I think that I’ve made it clear that I would, without a doubt, seize the opportunity to live a life without Multiple Sclerosis but I seem to have to skipped over the question of whether or not I would seize the opportunity to live a life with two flesh and bone legs again. The reason for this is simple. We do not know why infection has seized control of my right leg so there'd be no guarantee that if I were to be given a new flesh and bone leg that this same cycle of hell I'm living in now wouldn't start all over again. That is a hell I simply could not live through from the beginning again. Also it would have to be some kind of transplant and not only are we not medically there yet to make that leap and make it work, any recipients would have to be on rejection medications for the remainder of their lives and the risk of infection even with a good immune system is still there. My personal risk of infection is just far too high. There is a defect in my immune system somewhere and without fixing that, which can't be done currently, my infection problem would remain. Comparing MS to being an amputee is like comparing apples and oranges. Life as an amputee can return to an incredibly normal state with the right treatment. The same can not be said for MS.
I think that one of the biggest differences between me and the person that my friend was talking to is that I don’t view myself or identify myself as an amputee and person living with Multiple Sclerosis. Neither one of those things define me as a person. They never have and they never will. They are simply two small parts of the whole. I am far more than a person living with disabilities. I’m a writer, a photographer, an artist, a daughter, a sister, a friend, a neighbor and so much more. Those are the things that define me the most. When my friends and my family look at me those are the things they see, not a person with disabilities. They see me for who I am and they treat me as such and that is the way I want it.
I do not know the person my friend had this conversation with but I suspect that disability plays a big role in her life. I suspect that it plays a far bigger role in defining who she is than mine do in defining who I am. I suspect that if she were cured she is one of those people who simply would no longer know what to do with herself. I could be way off target. I only reach these conclusions because of the way she answered the question. If she thinks her friendships would change it makes me think that the majority of her friendships are based on disability. If she thinks her self out-look would change it makes me think that her disability is in a very big way, how she defines herself.
We are all different which is what makes humanity so interesting. There is no right way and no wrong way to be when living with a disease. Everyone reacts differently and everyone is allowed to tackle it in whichever way is best for them. My way doesn’t make me any better than people who choose to tackle it the way she has and her way doesn’t make her any better than the people who choose to tackle it the way that I do. Each of us has the free will to choose how we play the hands we are dealt in life. We can choose to fold or we can choose to stay in the game. In my eyes, saying no to a cure for any disease is folding and foolish and though I respect the right of this girl and others like her to reject a cure, I will never understand it. Personally, my door will always be open wide for the cure for Multiple Sclerosis and of course for the infections that without a lasting cure will end my life.
No comments:
Post a Comment