Today is my second day on Copaxone. I'm afraid of needles, but they have a nifty little thing called the autoject, that hides the needles from me. I didn't believe them when they said you don't feel the needle go in, but its true you don't feel it. You do however feel the intense burning sensation from the medicine for about 15-20 minutes, and I have about a 2inch welt for about 15 hours after the injection that is hot to the touch. Other than that though, I do not have any other side effects like the itching, and hopefully I wont get any of the panic attacks or weight gain either.
I was thinking this morning on my way to work, I have never done ANYTHING for more than maybe a month everyday. This medicine is a life long commitment, everyday for the rest of my life, I can't even really comprehend that. I'm so forgetful and I hope that I can be consistent and take it everyday! Interestingly, as I was walking to work I saw a blind woman, crossing the road. I have lived my life as an able bodied person, and inherently no matter how hard I have tried, I have always "felt bad" or wanted to "avoid" the disabled on one level or another. So today when I saw the blind woman, I watched to make sure she crossed the street okay, and for the first time did not feel these feelings. Rather I thought about how one day I could also be partially blind. I wondered where she was going and if I would have the strength to one day also walk places even if I could not see.
Which led me to thinking once again how absolutely fascinating this disease is. It is not like I can focus on preparing myself for some inevitable level of disability, or even a certain type of disability. This disease actually has the ability to blind me, make me lose my balance, make me numb, make me feel constant pain or tingling etc etc. We have 5 senses touch, smell, sight, hearing, and taste. My disease can screw with ALL of them. On top of that it can mess with memory. Utterly depressing, and hard to prepare for... to say the least.
The week I found out I 'may' have MS, was one of the hardest weeks of my life. For the first time, I had to truly recognize that my interaction, my dreams, my hopes, where going to be limited by my own body. At least that is how I felt, and it was devastating. Truly though, I won't be limited by my body, but rather a society that does not make space for a body such as mine. This isn't to much of a surprise considering it doesn't make much space for anyone but white men....
I was always interested in abelism, and now I will really have to start taking it up as something to bring into awareness, and to make sure if we ever reach some sort of equality, that it is truly for all of us, not just some of us.
Friday, February 12, 2010
Thursday, February 11, 2010
The "Human Experience"
We are so vastly different, so much so in fact I do not have the language to express it. I think two experiences have specifically shaped this reality for me, going to college and getting MS.
I went to Stanford University, for a number of reasons, at the top of the list though was the fact that Stanford has one of the largest Native populations for its caliber of education. I am Yaqui, Apache, Mexican, and White (if you don't know already), and I grew up in a predominately white town. For reasons that we will not go into today, I have always been passionate about racial inequality. Since the time I was probably 8 or 9 I have been talking about inequality and racism. So when I went to college I wanted to A) get as far away from Colorado as possible, and B) be around other people of color, specifically Natives. I went to college because I felt that it was vital that the world change, and it was my duty as a participant privileged enough to think about college to go and try and make some positive changes.
So I went to school, and I was astonished at what I found. As a young naive 18 year old, I thought being a person of color = being radical. But of course I found that this was not true; I felt betrayed, sad, and frustrated. I could not understand why everyone hadn't come to the same conclusions I had at a younger age, "the world is racist and fucked up". Eventually as I adjusted to school, I found more patience and love than I could have ever imagined. For those who know me, this may be a laughable idea, since most would not consider me loving and patient :P but I found more than I had had before, that's for sure! In reality though, the Native community at Stanford taught me a true diversity, that I will forever appreciate. From eccentric individual personalities to huge variations on political, religious, and cultural beliefs.
Now I must not have learned enough the first time, because the Creator sent me another lesson on diversity. For whatever dumb reason, I thought I would start talking to people with MS and there would be certain "given" rules. Everyone would have similar advice, there would be an accepted way to deal with the disease, I could incorporate the advice and move on. Well clearly this is in no way true. I have spoken on the phone with 2 people who have MS, and officially after my first injection last night (Started my meds- they're a trip!) I met in person a woman (my nurse) who has had MS for 35 years. Let me just say that their advice is all so very different that it almost leaves me in the same place I was before asking for it.
In reality these differences in advice, probably have to do with entirely different lives, coping mechanisms, cultures, and knowledge. But what struck me as originally responsible was the disease itself. MS is a disease that essentially is entirely unknown. What I mean by that is that it is random; random in time, random in symptoms, random in progression, random in levels of disability. It would seem near impossible to build solidarity on anything other than the random aspect. Which I think lends itself to driving everyone a little nuts. There seems to be a lot of fanaticism with MS, everybody swears by something. It's interesting, I don't know if I can articulate it more. I'm excited to learn from this community whatever it is I am to learn. A little upset the Creator choose to put me in a predominately white community, but maybe its to help be get over all my issues :P
I went to Stanford University, for a number of reasons, at the top of the list though was the fact that Stanford has one of the largest Native populations for its caliber of education. I am Yaqui, Apache, Mexican, and White (if you don't know already), and I grew up in a predominately white town. For reasons that we will not go into today, I have always been passionate about racial inequality. Since the time I was probably 8 or 9 I have been talking about inequality and racism. So when I went to college I wanted to A) get as far away from Colorado as possible, and B) be around other people of color, specifically Natives. I went to college because I felt that it was vital that the world change, and it was my duty as a participant privileged enough to think about college to go and try and make some positive changes.
So I went to school, and I was astonished at what I found. As a young naive 18 year old, I thought being a person of color = being radical. But of course I found that this was not true; I felt betrayed, sad, and frustrated. I could not understand why everyone hadn't come to the same conclusions I had at a younger age, "the world is racist and fucked up". Eventually as I adjusted to school, I found more patience and love than I could have ever imagined. For those who know me, this may be a laughable idea, since most would not consider me loving and patient :P but I found more than I had had before, that's for sure! In reality though, the Native community at Stanford taught me a true diversity, that I will forever appreciate. From eccentric individual personalities to huge variations on political, religious, and cultural beliefs.
Now I must not have learned enough the first time, because the Creator sent me another lesson on diversity. For whatever dumb reason, I thought I would start talking to people with MS and there would be certain "given" rules. Everyone would have similar advice, there would be an accepted way to deal with the disease, I could incorporate the advice and move on. Well clearly this is in no way true. I have spoken on the phone with 2 people who have MS, and officially after my first injection last night (Started my meds- they're a trip!) I met in person a woman (my nurse) who has had MS for 35 years. Let me just say that their advice is all so very different that it almost leaves me in the same place I was before asking for it.
In reality these differences in advice, probably have to do with entirely different lives, coping mechanisms, cultures, and knowledge. But what struck me as originally responsible was the disease itself. MS is a disease that essentially is entirely unknown. What I mean by that is that it is random; random in time, random in symptoms, random in progression, random in levels of disability. It would seem near impossible to build solidarity on anything other than the random aspect. Which I think lends itself to driving everyone a little nuts. There seems to be a lot of fanaticism with MS, everybody swears by something. It's interesting, I don't know if I can articulate it more. I'm excited to learn from this community whatever it is I am to learn. A little upset the Creator choose to put me in a predominately white community, but maybe its to help be get over all my issues :P
Sunday, February 7, 2010
Giving
"Its Better to give than not to"
I think there is a fallacy to this statement. I think that it is important to not be selfish, it is important to realize that you are not an individual in this world but rather a community member, but I think it can potentially be harmful to just give... I personally feel it is important to give with analysis. This is something I thought a lot about over Christmas (the time of giving..otherwise known as commercialism) but it came up for me recently because of Haiti.
To give with analysis is of utmost importance, especially if you are giving in a community that is not your own. I think my worry is that one can deny culpability when they "give". People can deny a communal responsibility to make this world a better place, by saying they are already participating in the process by giving, when in reality they are replicating systems of oppression.
The example that occurred to me during Christmas was related to US churches in foreign countries: Say there is a church in a small village that many Americans donate to because they support the missionary work being done, be it building homes, cleaning water, or providing other essentials. Over the years the church has not only the ability to forever alter the community/culture, but to insert itself as a powerful influence in community decisions. Rendering the community disempowered. Trying to make decisions that are best for the community but also simultaneously do not make the church "mad".
The example that comes to mind now, is Haiti. The fear I have for Haiti is that a truly revolutionary country, will once again be colonized through the increased giving of the West. The US and the west will gain more of a foothold in Haitian politics and policies. We have already begun to militarize the country. The American Cross has food and other resources it is keeping in areas that are less destroyed for fear of entering the "dangerous" parts. These are just entirely problematic to me. Had all the money donated to Haite gone to more progressive and revolutionary groups the recovery from this horrible earthquake would not have negative ramifications for decades to come.
Which brings me to service giving in general. I have issues with service giving that I have yet to be able to sort out. I am not referring to that of natural disaster giving as is the case with Haiti, but more along the lines of other service giving such as clothes, building things, water etc. I have a problem with the fact that they do very little skills building or leadership development. The other issue I have is that it replicates and maintains an existing power structure-- inherently there are those 'giving' and 'receiving'. In reality I think all service, should be recognized as part of a collective struggle to better our society and lives. We are not disconnected from one another but we have a philosophy especially in this country that successfully convinces us that we are.
Some thoughts, even after writing about it, I don't know how I feel. It is important to give, and feel compassion and act on that in a way that is selfless, but at the same time, we have to strive for a more analytical and aware way to give.
I think there is a fallacy to this statement. I think that it is important to not be selfish, it is important to realize that you are not an individual in this world but rather a community member, but I think it can potentially be harmful to just give... I personally feel it is important to give with analysis. This is something I thought a lot about over Christmas (the time of giving..otherwise known as commercialism) but it came up for me recently because of Haiti.
To give with analysis is of utmost importance, especially if you are giving in a community that is not your own. I think my worry is that one can deny culpability when they "give". People can deny a communal responsibility to make this world a better place, by saying they are already participating in the process by giving, when in reality they are replicating systems of oppression.
The example that occurred to me during Christmas was related to US churches in foreign countries: Say there is a church in a small village that many Americans donate to because they support the missionary work being done, be it building homes, cleaning water, or providing other essentials. Over the years the church has not only the ability to forever alter the community/culture, but to insert itself as a powerful influence in community decisions. Rendering the community disempowered. Trying to make decisions that are best for the community but also simultaneously do not make the church "mad".
The example that comes to mind now, is Haiti. The fear I have for Haiti is that a truly revolutionary country, will once again be colonized through the increased giving of the West. The US and the west will gain more of a foothold in Haitian politics and policies. We have already begun to militarize the country. The American Cross has food and other resources it is keeping in areas that are less destroyed for fear of entering the "dangerous" parts. These are just entirely problematic to me. Had all the money donated to Haite gone to more progressive and revolutionary groups the recovery from this horrible earthquake would not have negative ramifications for decades to come.
Which brings me to service giving in general. I have issues with service giving that I have yet to be able to sort out. I am not referring to that of natural disaster giving as is the case with Haiti, but more along the lines of other service giving such as clothes, building things, water etc. I have a problem with the fact that they do very little skills building or leadership development. The other issue I have is that it replicates and maintains an existing power structure-- inherently there are those 'giving' and 'receiving'. In reality I think all service, should be recognized as part of a collective struggle to better our society and lives. We are not disconnected from one another but we have a philosophy especially in this country that successfully convinces us that we are.
Some thoughts, even after writing about it, I don't know how I feel. It is important to give, and feel compassion and act on that in a way that is selfless, but at the same time, we have to strive for a more analytical and aware way to give.
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