OK, so this is a first time event for me. A bit of a piggyback blog, if you will. I know I always talk about the wonderful HD community I am a part of, and how important that support is to me. It is SO refreshing to log into facebook, and see how many other people are going through the same things that I am, on a daily basis. For humans giving voice to their ignorance, to assume that a person is treated wholly by medication and medical intervention alone, is absolutely wrong in my opinion. However, to supplement that daily drag of our need to be chemically enhanced, with the love and understanding that is afforded to us through personal relationships where we are understood without even having to say a whole lot, is pure and breathtaking...and so vital to our essence as emotional beings. Feeling alone is the thing that will break our spirits, no matter if you expect to live for another 50 years. Knowing you are not, in fact, alone, is the thing that will make life better for those of us, who only have a few years left.
That being said, I came across a blog this evening on facebook from another woman who is in the HD community. She was bringing up the issue of suicide, specifically as it pertains to HD patients. I have, myself, delved into this topic on my blog before, as the world started to get morally offended by certain states legalizing assisted suicide. When I started my own search, wanting to seek out any information on the statistics of suicide in this specific demographic, I was sure I would find copious amounts of articles and stories, dealing with this issue. I just assumed that in our small (in comparison) HD population, that suicide would be rampant, and that at least SOME people would want to talk about it. But there was really NOTHING....nothing at all. So for a while, I let it go.
But, over the last couple of years though, I have become fascinated with mental illness, especially when it ends in someone taking their own life. Call me what you will....being morbid doesn't scare me. And through all of my research and thousands of hours watching documentaries and reading accounts, I have learned a lot. I know, for a fact in my own heart, that some people just simply find this world too hard to bear. Some of us make it through our hard "young adult" years, and others cannot bear it. Some people just simply never live in what we like to refer to as "reality", and the task of living despite being on a different planet is overwhelming. These things are difficult for me to comprehend....because I have never been there myself. I have had difficult life experiences, and things that made me not want to wake up in the morning...as we all do...but, then one day it gets a little easier...and the next a little more so...and I am thankful that it is over, at least for now.
BUT, the issue of suicide in the HD community is another ball game, in it's entirety. Those of us who are suffering from the effects, aren't easily categorized. Because it is not only people who are diagnosed with HD who count, but rather ANYONE who has been impacted in any capacity. So, those of us who have watched what this disease will do to a person's physical body, as well as their mental capabilities, might not have the same reaction to suicide, if that victim is already sick and dying a slow death wracked by HD.
Suicide is a terrible thing, when it is a 15 year old, who told nobody he was having those inclinations, or even that he was depressed at all. It is a tragedy for a family whose 13 year old was mentally ill from the time he was 6. It is an enormous blow to the daughters of a 60 year old man, who struggled with isolating himself from the time he was 50. BUT, in my world....suicide makes a hell of a lot more sense. I watched my mom go through the last years of her life, who lost complete control of herself to a disease that she just couldn't master. This disease that steals away the very essence of who someone is, and depletes a person's functions. This disease who shows absolutely NO mercy, even though you beg it, plead, and command it to do so. SO SOMETIMES, people....suicide is beautiful.
It can never make total sense to someone who is not directly having to contend with the decision, or someone who has not been there to see that it might actually be better. Suicide is unexpected when a person has their whole life ahead of them. But it is also an ominous gift to those of us who will be spending our last years only being a burden.
You can't meditate on someone's existence, and wish they had taken their own life. That is not a part of our makeup as humans. We learn from the lessons life teaches us, and for me, I am glad for the time I had with my mom even when she was in between our world and the next. I am glad she didn't decide to leave us by her own hand. But...I also know that for myself, I don't need that time. I don't need to be waiting for death. I am not afraid. I sit with it....and I am okay with it. My time to go is not now, nor will it be for a long while. But I refuse to put my family through what I went through with my mom. For people in general, death is inevitable. But for those of us with HD, the mirage of death is a tease. It tricks us into believing that we will not suffer the way we have watched others suffer....it makes us believe that our families will be better off than we were. But DEATH, actual death....when it is well thought out, and planned and talked about....is amazingly peaceful and genuine...no matter how we get there. So, really, I ask you, what is more horrible? Ending your life....yourself, before death comes to tap you on your shoulder? Omitting so many thousands of hours of suffering? Or being "strong" enough to resist the desire to do so?
Sunday, November 20, 2011
Saturday, November 12, 2011
Life goes on?
Ahh, so....man I knew it had been a long time since I had written, but had no idea it has been THIS long. Life has a funny way of going by too fast...as I always say, hee hee. Sad, but most certainly true. The last time I DID write, there was a bit of a snowball beginning to take shape. And little did I know how long it would grow, slowly and inconspicuously, until I could hardly see anything past it.
SO...At the beginning of August, I started to notice that our 2 year old, Marin, was really not acting right. She had been complaining of her tummy hurting, and would have really irregular BMs. One day she would be constipated, and two later she would be running to the bathroom trying not to do diarrhea in her pants. I will tell you, first of all, that I am a rather obedient believer in the body. She is my fourth child, and so through the years, we have seen our share of anomalies. But things always seemed to even out eventually, and we would move on. But, she was not getting any better. The exact opposite was true, in fact, she was getting much worse. It went from just complaining, to being lethargic, and sleeping for sometimes 16 hours a night. She was also always saying that she was tired, and would sit on the couch for hours on end just sucking her thumb. She was not interested in playing at all, even when her friends came around. STRANGE, right?? I definitely started to believe that there was something really wrong. She started losing weight, and her eyes became sunken and they had dark circles under them. SO, i took her in to the doctor, and she informed me that it was probably constipation. I was like, OKKKKK....didn't really think that is what it was, but I was hoping so. If she can't poop, then she won't feel like eating, and she'll have no energy. At the time, it made sense. So, we were told to give her a huge dose of Xlax for a couple of days, and then on a dose of miralax every day. Well, two weeks later, and my poor baby having diarrhea every day, I took her back in to the pediatrician. At this point, she was incredibly miserable. She wouldn't let me put her down, and would scream, pretty much 24/7. So, once again I was told it was probably just constipation, and we took an Xray to get a look. Sure enough, it looked like that's what it was, so more laxatives and an appointment with a GI doctor. Well, that day as soon as I got her home, she went to the bathroom to poop. I had been religiously going with her, just to make sure there was nothing fishy showing up, and so I couldn't believe it when I saw blood in her poop. So, I called the on call nurse, and he told me to take her to the ER. 6 hours later, we were told that she was fine, and to just wait for the appointment with the GI doctor (luckily I was able to talk them in to taking her blood and testing for things like siliac and some cancers, which were all normal, thank goodness!!). SO...the appointment came and went, with the plan to do both an endoscopy and a colonoscopy that next week. It was HELL starving our baby, but we got through it, and were very encouraged that we would find our answer. About a week later, she came down with a stomach bug. All the other children got it too, and were over it within 24 hours. 4 days later, Marin was still puking everything up that she attempted to put down, and when she did happen to poo, it was liquid. SO...I took her in AGAIN to the pediatrician, and she was borderline dehydrated. Now, things started to feel like they were spiraling out of control. I felt like nobody was hearing me when I told them how my child was wasting away. At the appointment, she had lost a pound in a week....and later that same week when we saw the GI doctor for the results of the test, she had lost another pound. It had been three days. And sure enough, there had been some abnormal results, which looked like some sort of allergy. Long story short, and 9 days later, allergy tests revealed the issue. She has an egg allergy!!!! The biggest thing for me during this time was finding people to be on my side, people who would listen to me, and believe me when I told them that she WAS sick. At the end of the process, I began to feel like maybe I WAS crazy, lol. She is doing MUCH better now. We have completely cut out eggs from her diet, and I am happy to tell you that she is finally acting like a normal two year old! But, needless to say, these things happening over a LOOONG extended period of time, kept me away from writing, as I normally feel compelled to do every once in a while.
Also, I think it has to do with the fact that I find myself avoiding thinking about all of this heavy shit in my life...having HD. I know that is a dangerous place for me to be. When I think about it, contemplate it, and allow myself the time to feel the sadness, I end up feeling much more like I have a grip on reality. I know that sometimes life just doesn't allow that to happen...and I think in a way, those are little blessings in disguise. Sometimes I am just too busy to worry about what is going on with me internally.
But then...I do have a moment to sit with myself and to get a really good look at what has all happened in the last year, and it all comes rushing back in. Right now, I am really feeling the weight of the things that I was suffering through this exact time last year. And the memories come to me in images that are SO vivid. Like the hundred times I rolled mom to the cafeteria in her wheelchair, Marin in her lap, for lunch. And the sinking feeling every time I walked out of that place that I hoped was "good enough" for her. The nights spent awake, wondering when the end would come, and crying myself to sleep when I imagined how much pain my mom was enduring at that very moment. The feeling of hopelessness....that there was nothing I could do. And also the guilt of feeling relief that it was coming to a close. The times I almost threw up while trying to feed her pureed foods, and my soul dying a little bit inside that this is what her life had come to. These feelings weren't a one time deal...but rather something I had to talk myself into doing EVERY day. And yet, this time last year, my mom was still on this earth. She was going downhill fast and it was so scary, but she was here. I still got to feel her embrace and hold her hand.
A year ago I FINALLY realized that no matter how much I hoped, and how much I prayed, things weren't going to get better. I was going to lose my mom, too early, and too horribly. And also that meant the same is true for me. I can hope it isgoing to be different, pray all I want, cry about it, be angry, be an activist....or just ignore it completely. But none of that changes where I am destined to go. NONE of it.
So for now, I take relief in the times when I am too busy to think about it, and don't have to feel guilty for it. And when I find myself in the trenches, once again waging my own personal battle to survive, I figure that is just a part of the process for me. It is my life...and as hard as it is sometimes, I am incredibly lucky that I still have one to live!!
SO...At the beginning of August, I started to notice that our 2 year old, Marin, was really not acting right. She had been complaining of her tummy hurting, and would have really irregular BMs. One day she would be constipated, and two later she would be running to the bathroom trying not to do diarrhea in her pants. I will tell you, first of all, that I am a rather obedient believer in the body. She is my fourth child, and so through the years, we have seen our share of anomalies. But things always seemed to even out eventually, and we would move on. But, she was not getting any better. The exact opposite was true, in fact, she was getting much worse. It went from just complaining, to being lethargic, and sleeping for sometimes 16 hours a night. She was also always saying that she was tired, and would sit on the couch for hours on end just sucking her thumb. She was not interested in playing at all, even when her friends came around. STRANGE, right?? I definitely started to believe that there was something really wrong. She started losing weight, and her eyes became sunken and they had dark circles under them. SO, i took her in to the doctor, and she informed me that it was probably constipation. I was like, OKKKKK....didn't really think that is what it was, but I was hoping so. If she can't poop, then she won't feel like eating, and she'll have no energy. At the time, it made sense. So, we were told to give her a huge dose of Xlax for a couple of days, and then on a dose of miralax every day. Well, two weeks later, and my poor baby having diarrhea every day, I took her back in to the pediatrician. At this point, she was incredibly miserable. She wouldn't let me put her down, and would scream, pretty much 24/7. So, once again I was told it was probably just constipation, and we took an Xray to get a look. Sure enough, it looked like that's what it was, so more laxatives and an appointment with a GI doctor. Well, that day as soon as I got her home, she went to the bathroom to poop. I had been religiously going with her, just to make sure there was nothing fishy showing up, and so I couldn't believe it when I saw blood in her poop. So, I called the on call nurse, and he told me to take her to the ER. 6 hours later, we were told that she was fine, and to just wait for the appointment with the GI doctor (luckily I was able to talk them in to taking her blood and testing for things like siliac and some cancers, which were all normal, thank goodness!!). SO...the appointment came and went, with the plan to do both an endoscopy and a colonoscopy that next week. It was HELL starving our baby, but we got through it, and were very encouraged that we would find our answer. About a week later, she came down with a stomach bug. All the other children got it too, and were over it within 24 hours. 4 days later, Marin was still puking everything up that she attempted to put down, and when she did happen to poo, it was liquid. SO...I took her in AGAIN to the pediatrician, and she was borderline dehydrated. Now, things started to feel like they were spiraling out of control. I felt like nobody was hearing me when I told them how my child was wasting away. At the appointment, she had lost a pound in a week....and later that same week when we saw the GI doctor for the results of the test, she had lost another pound. It had been three days. And sure enough, there had been some abnormal results, which looked like some sort of allergy. Long story short, and 9 days later, allergy tests revealed the issue. She has an egg allergy!!!! The biggest thing for me during this time was finding people to be on my side, people who would listen to me, and believe me when I told them that she WAS sick. At the end of the process, I began to feel like maybe I WAS crazy, lol. She is doing MUCH better now. We have completely cut out eggs from her diet, and I am happy to tell you that she is finally acting like a normal two year old! But, needless to say, these things happening over a LOOONG extended period of time, kept me away from writing, as I normally feel compelled to do every once in a while.
Also, I think it has to do with the fact that I find myself avoiding thinking about all of this heavy shit in my life...having HD. I know that is a dangerous place for me to be. When I think about it, contemplate it, and allow myself the time to feel the sadness, I end up feeling much more like I have a grip on reality. I know that sometimes life just doesn't allow that to happen...and I think in a way, those are little blessings in disguise. Sometimes I am just too busy to worry about what is going on with me internally.
But then...I do have a moment to sit with myself and to get a really good look at what has all happened in the last year, and it all comes rushing back in. Right now, I am really feeling the weight of the things that I was suffering through this exact time last year. And the memories come to me in images that are SO vivid. Like the hundred times I rolled mom to the cafeteria in her wheelchair, Marin in her lap, for lunch. And the sinking feeling every time I walked out of that place that I hoped was "good enough" for her. The nights spent awake, wondering when the end would come, and crying myself to sleep when I imagined how much pain my mom was enduring at that very moment. The feeling of hopelessness....that there was nothing I could do. And also the guilt of feeling relief that it was coming to a close. The times I almost threw up while trying to feed her pureed foods, and my soul dying a little bit inside that this is what her life had come to. These feelings weren't a one time deal...but rather something I had to talk myself into doing EVERY day. And yet, this time last year, my mom was still on this earth. She was going downhill fast and it was so scary, but she was here. I still got to feel her embrace and hold her hand.
A year ago I FINALLY realized that no matter how much I hoped, and how much I prayed, things weren't going to get better. I was going to lose my mom, too early, and too horribly. And also that meant the same is true for me. I can hope it isgoing to be different, pray all I want, cry about it, be angry, be an activist....or just ignore it completely. But none of that changes where I am destined to go. NONE of it.
So for now, I take relief in the times when I am too busy to think about it, and don't have to feel guilty for it. And when I find myself in the trenches, once again waging my own personal battle to survive, I figure that is just a part of the process for me. It is my life...and as hard as it is sometimes, I am incredibly lucky that I still have one to live!!
Tuesday, August 9, 2011
Make it work
Hello all of my lovely and dear readers! I hope this finds you all doing as wonderfully as possible! The Beers kids are in their third week of school already, and I am happy to report that all is going incredibly well. We have chosen to skip parent orientation tonight, but I can't feel too guilty because after tomorrow, I will have already clocked 5 volunteer hours. Our little school is quite amazing, and I love being able to be involved with my kids teachers and administrators. Let me tell you, it's much easier to deal with drama if you are considered an involved parent. SO, on and forward with the school year. I have been thinking hard on the fact that his summer, more than any time in my life, I have been establishing friendships with people in the HD community. There have been many people that have expressed anxiety about being tested, and more who have been tested who now know their fate. And even some, who have known, but who also feel lost.
Let me say first, that I always talk about getting tested as an extremely personal journey. If HD is a factor in your life, you are automatically a part of the HD community. Unfortunately for a lot of us, it means trying to answer the question of whether or not to get tested. I have written before about my own journey in getting tested. It was like anything else in life, a choice. There were no horns blowing from the heavens to alert me to the fact that it was "my time" to find out. It was for me, just something I HAD to know.
There are many reasons why one should get tested. For the more unfortunate ones, they might be tested without it being a choice. Because their bodies have already begun to deteriorate. For some, it might be because they are thinking of getting married, or having children...and HD might change those plans. Others get tested because they just can't not know. There are thousands of things our healthcare providers inundate us with to help us along the path to testing, and most are valid points. If you know, you can begin to live a healthier life, make decisions about passing the gene to your children, join studies and get involved with the HD community. But, when it comes down to it....all these things that are looked upon by outside people as positive things, come with a huge dose of reality. The knowledge of having HD changes the game. It makes our mortality a raw sense of loss and frustration and fear.
If you think you are not ready for it, you would probably be right, if I am being honest. It's like any other big decision you make in life. Most of the time, we have to take a leap of faith, and jump with both feet first, not knowing what the outcome will be. We are never REALLY ready to find out we are going to suffer. For me, I had to know for my kids. I was already 16 when we found out my mom had HD. I wanted something different for my family. If i had the defective gene, I wanted it to be something we talked about, something my babies could ask questions about, and express their own feelings of being scared or angry. The period of time when my mom was dying, was definitely the time when they really realized what HD meant. I had a lot of questions asked about it, and whether or not they would get it. One of the hardest things I have had to do in my entire lifetime is educate them on the fact that they might have it too. The way I see it, is knowledge is power. If we put our grief aside, I think we will truly find that knowing for ourseleves, whether or not we have it, is better than the unknown. If you have a tremble, and wonder...could that be HD? I feel, for me, it is better to embrace the fact that, yes, it probably is. To envelop all of the feelings I have about the disease, and make my life work anyway!
I know, personally, that there is no easy answer to this question of whether or not to be tested. For most of us facing this decision, we have a horrible job of watching others suffer first hand. We see the destruction, and the pain, and have felt the loss of not having a healthy parent. Let me just go ahead and say, IT'S NOT FAIR, damnit! I know, that it doesn't make sense. I have known my own fate now for a lot of years, and it STILL doesn't make sense. The best piece of advice I have, for anyone that is thinking about being tested or has just found out...or who feels isolated, is get to know other people who are going through the same thing. I mean, when it comes down to it, there is really nobody else who can truly understand and relate. I LOVE my incredible husband, and my infinitely amazing friends, who allow me to vent when I need to, or support me when I need to cry. But, to be able to say to someone else with HD, "I am having a bad day," and for them to understand without having to say any words, that is priceless. To know other people who have gone through life with a tormented parent, thats so incredibly important. Because there are so many of us. And when you are feeling scared or low, there ARE people who care! We don't have to be alone in facing this, anymore, like our loved ones before us did.
And, there is, the way I see it, a universal truth for ALL of us. Whether you have known for a hundred years, or are just now finding out...even for those among us who choose not to know...we ALL face the same truth. We have to make it work...we have to. HD is so irresistably daunting. The thought of what we face can, alone, dig a hole of darkness that is impossible to climb out of. But, we must learn to live with the pain, in whatever way we can. It's not going to change our destiny. That is left up to the public advocates and the smart doctors who hold the cure in their hands. The technical aspects are a fight we can only support from the outside. But there is a battle that we can win. We have to learn to be okay with just being us. As damaged as we are, we can still have the things we want out of life. We can still have lives full of joy and wonder. We can make things right for our children, and for those who love us. THAT, is a goal we CAN attain. It's not easy....a LOT of days, it is soooo fucking hard. And it is those times that we just have to focus on putting one foot in front of the other, until we are once again in the place of peacefulness. Until we walk by our kids rooms, and catch a glimpse of a sweet and innocent being dreaming the night away, and feel our heart melt. Until we watch the awe of our little people discovering something new, and are reminded why we are even on thi earth. Until we feel understood, and are thankful for what we have, no matter what turmoil we have to face. We have to fight for a good life, because that's really the only thing that matters. We can get through it together!!
So, stay strong, my many loved ones that are facing HD. Try to remember to enjoy the good times, when the hard times wane a bit. Strive to feel joy as deeply as we do fear! But above all, learn to love yourself despite HD. I do, love all of you, and I am so lucky to have you all in my life!
Let me say first, that I always talk about getting tested as an extremely personal journey. If HD is a factor in your life, you are automatically a part of the HD community. Unfortunately for a lot of us, it means trying to answer the question of whether or not to get tested. I have written before about my own journey in getting tested. It was like anything else in life, a choice. There were no horns blowing from the heavens to alert me to the fact that it was "my time" to find out. It was for me, just something I HAD to know.
There are many reasons why one should get tested. For the more unfortunate ones, they might be tested without it being a choice. Because their bodies have already begun to deteriorate. For some, it might be because they are thinking of getting married, or having children...and HD might change those plans. Others get tested because they just can't not know. There are thousands of things our healthcare providers inundate us with to help us along the path to testing, and most are valid points. If you know, you can begin to live a healthier life, make decisions about passing the gene to your children, join studies and get involved with the HD community. But, when it comes down to it....all these things that are looked upon by outside people as positive things, come with a huge dose of reality. The knowledge of having HD changes the game. It makes our mortality a raw sense of loss and frustration and fear.
If you think you are not ready for it, you would probably be right, if I am being honest. It's like any other big decision you make in life. Most of the time, we have to take a leap of faith, and jump with both feet first, not knowing what the outcome will be. We are never REALLY ready to find out we are going to suffer. For me, I had to know for my kids. I was already 16 when we found out my mom had HD. I wanted something different for my family. If i had the defective gene, I wanted it to be something we talked about, something my babies could ask questions about, and express their own feelings of being scared or angry. The period of time when my mom was dying, was definitely the time when they really realized what HD meant. I had a lot of questions asked about it, and whether or not they would get it. One of the hardest things I have had to do in my entire lifetime is educate them on the fact that they might have it too. The way I see it, is knowledge is power. If we put our grief aside, I think we will truly find that knowing for ourseleves, whether or not we have it, is better than the unknown. If you have a tremble, and wonder...could that be HD? I feel, for me, it is better to embrace the fact that, yes, it probably is. To envelop all of the feelings I have about the disease, and make my life work anyway!
I know, personally, that there is no easy answer to this question of whether or not to be tested. For most of us facing this decision, we have a horrible job of watching others suffer first hand. We see the destruction, and the pain, and have felt the loss of not having a healthy parent. Let me just go ahead and say, IT'S NOT FAIR, damnit! I know, that it doesn't make sense. I have known my own fate now for a lot of years, and it STILL doesn't make sense. The best piece of advice I have, for anyone that is thinking about being tested or has just found out...or who feels isolated, is get to know other people who are going through the same thing. I mean, when it comes down to it, there is really nobody else who can truly understand and relate. I LOVE my incredible husband, and my infinitely amazing friends, who allow me to vent when I need to, or support me when I need to cry. But, to be able to say to someone else with HD, "I am having a bad day," and for them to understand without having to say any words, that is priceless. To know other people who have gone through life with a tormented parent, thats so incredibly important. Because there are so many of us. And when you are feeling scared or low, there ARE people who care! We don't have to be alone in facing this, anymore, like our loved ones before us did.
And, there is, the way I see it, a universal truth for ALL of us. Whether you have known for a hundred years, or are just now finding out...even for those among us who choose not to know...we ALL face the same truth. We have to make it work...we have to. HD is so irresistably daunting. The thought of what we face can, alone, dig a hole of darkness that is impossible to climb out of. But, we must learn to live with the pain, in whatever way we can. It's not going to change our destiny. That is left up to the public advocates and the smart doctors who hold the cure in their hands. The technical aspects are a fight we can only support from the outside. But there is a battle that we can win. We have to learn to be okay with just being us. As damaged as we are, we can still have the things we want out of life. We can still have lives full of joy and wonder. We can make things right for our children, and for those who love us. THAT, is a goal we CAN attain. It's not easy....a LOT of days, it is soooo fucking hard. And it is those times that we just have to focus on putting one foot in front of the other, until we are once again in the place of peacefulness. Until we walk by our kids rooms, and catch a glimpse of a sweet and innocent being dreaming the night away, and feel our heart melt. Until we watch the awe of our little people discovering something new, and are reminded why we are even on thi earth. Until we feel understood, and are thankful for what we have, no matter what turmoil we have to face. We have to fight for a good life, because that's really the only thing that matters. We can get through it together!!
So, stay strong, my many loved ones that are facing HD. Try to remember to enjoy the good times, when the hard times wane a bit. Strive to feel joy as deeply as we do fear! But above all, learn to love yourself despite HD. I do, love all of you, and I am so lucky to have you all in my life!
Thursday, July 14, 2011
Letter from my mom
Hello everyone! I can't believe for us, the summer only lasts one more week, and then the kids are back in school. Time going by never ceases to amaze me. This has been a wonderful summer, with all those that are close to us branching off and exploring new places and things. And of course we have had our share of travels, more in the past two months than ever before, it seems. Beach trip with the Montanos at the beginning of June, followed by a trip to west Texas to soak in a dose of roots. And then to Illinois, me and the kids had such a wonderful time with the Foxes. Then of course, last but not least...all of us got to go to New Mexico with Mary and Chris...where we enjoyed a much needed hiatus in the beautiful mountains. SO lucky to have the opportunity to create new memories with my family and friends. And of course, for me it has all been a bit bittersweet, as it always has been...but a little more so this year in wondering what my mom would think about all of these trips! And of course knowing she would have loved to come along.
One of my Dad's summer projects has been clearing out his house for a big garage sale. For those of you who don't know my dad, this is a super big deal for him. He is an amateur junk collector, and doesn't always get rid of the old to make room for the new. But he has a brand new kitchen, thanks to his house fire, and purging a bunch of old things is cleansing his soul, I think. A whole new beginning in the house he has called home for 28 years. One of the things he came across when he was going through all the junk was the box of letters and cards he and my mom had written and kept through the years. And there just so happened to be a letter that mom had written to me 14 years ago.
This time in our lives was a very difficult one, as I have described a bit before in earlier blogs. The year was 1997 and my sister had just gone off to her first semester of college. Mom was still working, teaching full time, and both of my parents were convinced I was spiraling out of control. WHICH..in all fairness, I was coming pretty close to. Most evenings, I would come home to my mom who was already angry about something, already tearing through the house out of control. And as evening turned into night, I was either stashing myself quietly in my room trying to avoid confrontation, or getting roped into a knock down drag out, with which confrontation was no longer a choice. I can imagine that this would be a hard time for any mother. Her kids were growing up, one had already left, and the other couldn't wait to do the same. And for my mom, this just compounded what had already been an unmanageable situation. And more times than I can count, these sessions of complete irrational breakdown were ended with my mom leaving the house and going to stay over night in a hotel.
I don't know why my mom never gave me the letter she wrote on October 11, 1997, as she sat in a hotel in San Marcos by herself. And as I read it today, I felt a complete sense of frustration and sadness...that she never did. In the letter, she first told me how proud she is of me, and how she loves that I speak my mind. Then she acknowledged how crazy she'd been acting, and that she was sorry, and exhausted and afraid. That she didn't have anything left by the time she got home from work when she didn't have to pretend anymore to be well anymore. How her family was the most important thing in her life, and how sad she was that she had to worry about HD...and how she wanted us all to see a counselor.
It's not a very long letter, just two pages of her gnarled although still legible handwriting. But as I read it, the overwhelming feeling I had within my own heart, was WHY?? Why didn't you tell me, mom? Why didn't she sit down with me, and tell me she was scared and that she needed me? Why didn't she tell me that she knew about and remembered her outbursts, and that she didn't want to do it and was sorry? I mean, I knew on some level that these were the feelings she had. But here I am, 30 years old, and just now realizing that she retained her self introspection for far longer than I led myself to believe all these years. This may seem like a blessing, and believe me, I really see it as that and I am so thankful. But now I have to shift the way I have perceived her dealing with the disease. It definitely answers the question of whether or not she knew she was going crazy. I know now she most certainly did. And I can guess, knowing her as I did, that she probably kept everything inside because she was so damn afraid that she didn't even know how to put it into words. And it scares me stupid because I now truly see, just what an awful journey it was that she was forced to take. I guess all along it was a little easier for me to think of her in terms of having completely lost her mind. Like, maybe it wasn't so bad for her because she didn't know what was happening. And now, I have concrete proof that she was there...totally present even though her body failed to allow her to show it, she was there. She knew she was going crazy but couldn't do a thing to stop it. She was there in her room all alone,. when there were no visitors. She was experiencing the sensation of starving, and the fear when she couldn't swallow. I just hope in the end, she also was there feeling the sense of peace as she finally relented, and let go of her life.
It's so fucking terrible, I can hardly stand it. Mostly because it is the biggest sign I have had in a long time, that tells me I am just like her. I am just like any other person having to deal with HD. I am a young mother, simply enjoying life symptom free. Just as my mom was in the pictures I have of her, cooking in the kitchen with me and Cindy. Just being stubborn me doesn't change the path that I have to take. Just because I am a victim who takes action, and does as much as I can to live with this disease, doesn't mean that I won't go crazy and know it. Just because I love life, doesn't mean I get to live it as long as I so desperately want to. Just like my mom.
I want to shout, "WHY DIDN'T YOU TELL ME MOM? Why didn't you trust me, why didn't you tell me what to do?" But most of all, I wish I could have 10 minutes with my sweet mom. To tell her how wonderful she is, and how I wouldn't have traded her for anything. How I understand, and am not angry with her. And how my heart aches every day that I am alive, because she is gone forever. How very sorry I am that she had to go through this, and feel alone.
Yes, my time on Earth is going to be different. And in turn, my children's experience with HD will be different because of it. But I can't help the feeling of a completely senseless loss. Like I totally missed out on a part of my mom's life, that can no longer be discovered. Which, for me is new and uncharted territory. Right now, emotion is raw and all of those intense feelings of sadness are creeping back in. Because my mom suffered SO MUCH. And because I don't have any choice but to face that myself. But maybe...maybe as things settle down, I can sit more with the possibility that perhaps she sent me this letter, at this specific time in my life, to remind me that I MUST untangle her existence from my own. To encourage me to keep being open and honest, to keep writing about it. Maybe it is her telling me, after all.
One of my Dad's summer projects has been clearing out his house for a big garage sale. For those of you who don't know my dad, this is a super big deal for him. He is an amateur junk collector, and doesn't always get rid of the old to make room for the new. But he has a brand new kitchen, thanks to his house fire, and purging a bunch of old things is cleansing his soul, I think. A whole new beginning in the house he has called home for 28 years. One of the things he came across when he was going through all the junk was the box of letters and cards he and my mom had written and kept through the years. And there just so happened to be a letter that mom had written to me 14 years ago.
This time in our lives was a very difficult one, as I have described a bit before in earlier blogs. The year was 1997 and my sister had just gone off to her first semester of college. Mom was still working, teaching full time, and both of my parents were convinced I was spiraling out of control. WHICH..in all fairness, I was coming pretty close to. Most evenings, I would come home to my mom who was already angry about something, already tearing through the house out of control. And as evening turned into night, I was either stashing myself quietly in my room trying to avoid confrontation, or getting roped into a knock down drag out, with which confrontation was no longer a choice. I can imagine that this would be a hard time for any mother. Her kids were growing up, one had already left, and the other couldn't wait to do the same. And for my mom, this just compounded what had already been an unmanageable situation. And more times than I can count, these sessions of complete irrational breakdown were ended with my mom leaving the house and going to stay over night in a hotel.
I don't know why my mom never gave me the letter she wrote on October 11, 1997, as she sat in a hotel in San Marcos by herself. And as I read it today, I felt a complete sense of frustration and sadness...that she never did. In the letter, she first told me how proud she is of me, and how she loves that I speak my mind. Then she acknowledged how crazy she'd been acting, and that she was sorry, and exhausted and afraid. That she didn't have anything left by the time she got home from work when she didn't have to pretend anymore to be well anymore. How her family was the most important thing in her life, and how sad she was that she had to worry about HD...and how she wanted us all to see a counselor.
It's not a very long letter, just two pages of her gnarled although still legible handwriting. But as I read it, the overwhelming feeling I had within my own heart, was WHY?? Why didn't you tell me, mom? Why didn't she sit down with me, and tell me she was scared and that she needed me? Why didn't she tell me that she knew about and remembered her outbursts, and that she didn't want to do it and was sorry? I mean, I knew on some level that these were the feelings she had. But here I am, 30 years old, and just now realizing that she retained her self introspection for far longer than I led myself to believe all these years. This may seem like a blessing, and believe me, I really see it as that and I am so thankful. But now I have to shift the way I have perceived her dealing with the disease. It definitely answers the question of whether or not she knew she was going crazy. I know now she most certainly did. And I can guess, knowing her as I did, that she probably kept everything inside because she was so damn afraid that she didn't even know how to put it into words. And it scares me stupid because I now truly see, just what an awful journey it was that she was forced to take. I guess all along it was a little easier for me to think of her in terms of having completely lost her mind. Like, maybe it wasn't so bad for her because she didn't know what was happening. And now, I have concrete proof that she was there...totally present even though her body failed to allow her to show it, she was there. She knew she was going crazy but couldn't do a thing to stop it. She was there in her room all alone,. when there were no visitors. She was experiencing the sensation of starving, and the fear when she couldn't swallow. I just hope in the end, she also was there feeling the sense of peace as she finally relented, and let go of her life.
It's so fucking terrible, I can hardly stand it. Mostly because it is the biggest sign I have had in a long time, that tells me I am just like her. I am just like any other person having to deal with HD. I am a young mother, simply enjoying life symptom free. Just as my mom was in the pictures I have of her, cooking in the kitchen with me and Cindy. Just being stubborn me doesn't change the path that I have to take. Just because I am a victim who takes action, and does as much as I can to live with this disease, doesn't mean that I won't go crazy and know it. Just because I love life, doesn't mean I get to live it as long as I so desperately want to. Just like my mom.
I want to shout, "WHY DIDN'T YOU TELL ME MOM? Why didn't you trust me, why didn't you tell me what to do?" But most of all, I wish I could have 10 minutes with my sweet mom. To tell her how wonderful she is, and how I wouldn't have traded her for anything. How I understand, and am not angry with her. And how my heart aches every day that I am alive, because she is gone forever. How very sorry I am that she had to go through this, and feel alone.
Yes, my time on Earth is going to be different. And in turn, my children's experience with HD will be different because of it. But I can't help the feeling of a completely senseless loss. Like I totally missed out on a part of my mom's life, that can no longer be discovered. Which, for me is new and uncharted territory. Right now, emotion is raw and all of those intense feelings of sadness are creeping back in. Because my mom suffered SO MUCH. And because I don't have any choice but to face that myself. But maybe...maybe as things settle down, I can sit more with the possibility that perhaps she sent me this letter, at this specific time in my life, to remind me that I MUST untangle her existence from my own. To encourage me to keep being open and honest, to keep writing about it. Maybe it is her telling me, after all.
Tuesday, May 31, 2011
My life, and changes
Well, as usual, I just can't believe how fast our time on this earth goes by!! Summer is finally here, and we are readying ourselves for all of the super fun trips we have planned. Not to mention that I am officially, if somewhat reluctantly, a mother to three elementary students now. WOWZA! Of course the tears have come sporadically, when I think of my baby Griffin going off to kindergarten, as they have with all of my kids, as I am forced to come out of denial....no longer able to convince myself that they are going to stay little forever. And as I have pondered my intense feelings, I have begun to dig a little deeper to try to figure out why I feel so sad when they reach their milestones...
I would like to first off, report that I am feeling like myself again, as the Cymbalta has begun to do it's job. I was talking to my friend Mary the other night about how I am finally understanding just HOW depressed I was. And how long it went on... I believe since before we moved back to Texas. When I was in Colorado by myself, with four kids for three months, I could be pretty kind to myself about feeling down. That is a huge job after all, and even though it was tough, I thought I did a pretty damn good job of muddling through. But, as we moved back, I really got into a funk that I can't quite put my finger on, except for to say that facing my sick mom on a regular basis, just really threw me for a loop that I was not prepared for. My whole life revolved around being scared, not sleeping, self medicating...and trying to hold everything together for my kids. There was no sense of normalcy, I had lost myself. I no longer did any of the "mom" things that I had done, and that I had wanted to do.. The kids were not in any extracurricular activities, and we hardly did anything on our own, because I just couldn't get it together. Of course at the time, I didn't see it....and...for what it's worth, I am understanding with myself and try to remember that that whole period of time, I was grieving, and desperately frightened. But, I am also SO glad to say that it is, for the most part, over!!
I planted a garden this spring. I don't know how many of you know this, but I am TERRIBLE at keeping plants alive...although my mother was the complete opposite. She had an incredible green thumb, and growing up, our backyard was always lush and flowing with literally hundreds of beautiful flowers and plants. So, in planting my own garden, it was with the hope that it would somehow bring me closer to her, in a way....even though I had no idea how to make it successful. But, as my plants started to grow, slowly getting bigger each week, it was like I was able to see the physical manifestation of the transformation that was happening inside of me. As they sprouted their tiny leaves in my kitchen, for the first time in so long, I felt a sense of hope. As if, maybe these tiny little leaves represented my rebirth as well. From a person grieving, to the person that has grown from loss. And as I have watched them flourish, I have felt within myself, the grace of peace take root. There are no more requirements of me to be at my mother's bedside, watching her waste away. There are no more nights that I have to sit up, writing her story as if she is whispering in my ear. She is finally free, and the only thing left now at this moment in time, is for me to grow into the person I want to be. And as I have continued to work in my garden, and take loving care of my precious plants...I am also nurturing in turn, my heart....my own subconscious self. And to my immense joy, they have all begun to fruit beautifully before my very eyes. I can finally see the hard work paying off, as we get to enjoy the delicious vegetables and herbs....and also, as I can sit quietly by myself, and not be afraid of what might be lurking in the depths of my soul, waiting to attack when it has a moment of idleness.
I know that a lot of this has to do with the fact that I am finally coming out of a depression that I failed to see in the first place. Each day, I move a little closer to that light that I have always talked about...the intense light of my happy life, waiting for me to return so that I can move on. There are still hard days, and things that scare me...like Griffin graduating pre-school. The things that frighten me now, are the physical changes that tell me time is moving on. It stuns me into numbness, because I feel like time is the one thing I don't have...still....and probably never will. My baby, going in to kindergarten, knows who I am. He loves me unconditionally, and pretty much believes that I hung the moon. He receives my affection every day, and he knows, without a doubt, that I love him. But who will this same baby be, when he is in fourth grade, changing campuses at his school?? Who will he be when he goes to his first dance....who will he be when he is old enough to understand what HD means? Will my baby still know how much I love him, or will HD have changed all of that already??
I know that as I grow, and begin to flourish for the first time in a long time...that it is not without struggle or sadness. I might have a leaf, getting slowly eaten away by something unseen, that I have to eventually decide to break off so that the rest of me can be healthy. I might even lose a whole part of me for a time...wondering if I can actually survive. Change is never going to be something that I can avoid. But then, one day, a little bud of a new promise will reveal itself, and I will know that as long as I am alive, I have the opportunity to nurture and grow a healthy life. That I always have the chance to come back from darkness, and into the life giving light. And as I sit in this place, where I am able to reap the fruits of my labor, I can begin to be thankful once again, that I have the opportunity to be beautiful!
I would like to first off, report that I am feeling like myself again, as the Cymbalta has begun to do it's job. I was talking to my friend Mary the other night about how I am finally understanding just HOW depressed I was. And how long it went on... I believe since before we moved back to Texas. When I was in Colorado by myself, with four kids for three months, I could be pretty kind to myself about feeling down. That is a huge job after all, and even though it was tough, I thought I did a pretty damn good job of muddling through. But, as we moved back, I really got into a funk that I can't quite put my finger on, except for to say that facing my sick mom on a regular basis, just really threw me for a loop that I was not prepared for. My whole life revolved around being scared, not sleeping, self medicating...and trying to hold everything together for my kids. There was no sense of normalcy, I had lost myself. I no longer did any of the "mom" things that I had done, and that I had wanted to do.. The kids were not in any extracurricular activities, and we hardly did anything on our own, because I just couldn't get it together. Of course at the time, I didn't see it....and...for what it's worth, I am understanding with myself and try to remember that that whole period of time, I was grieving, and desperately frightened. But, I am also SO glad to say that it is, for the most part, over!!
I planted a garden this spring. I don't know how many of you know this, but I am TERRIBLE at keeping plants alive...although my mother was the complete opposite. She had an incredible green thumb, and growing up, our backyard was always lush and flowing with literally hundreds of beautiful flowers and plants. So, in planting my own garden, it was with the hope that it would somehow bring me closer to her, in a way....even though I had no idea how to make it successful. But, as my plants started to grow, slowly getting bigger each week, it was like I was able to see the physical manifestation of the transformation that was happening inside of me. As they sprouted their tiny leaves in my kitchen, for the first time in so long, I felt a sense of hope. As if, maybe these tiny little leaves represented my rebirth as well. From a person grieving, to the person that has grown from loss. And as I have watched them flourish, I have felt within myself, the grace of peace take root. There are no more requirements of me to be at my mother's bedside, watching her waste away. There are no more nights that I have to sit up, writing her story as if she is whispering in my ear. She is finally free, and the only thing left now at this moment in time, is for me to grow into the person I want to be. And as I have continued to work in my garden, and take loving care of my precious plants...I am also nurturing in turn, my heart....my own subconscious self. And to my immense joy, they have all begun to fruit beautifully before my very eyes. I can finally see the hard work paying off, as we get to enjoy the delicious vegetables and herbs....and also, as I can sit quietly by myself, and not be afraid of what might be lurking in the depths of my soul, waiting to attack when it has a moment of idleness.
I know that a lot of this has to do with the fact that I am finally coming out of a depression that I failed to see in the first place. Each day, I move a little closer to that light that I have always talked about...the intense light of my happy life, waiting for me to return so that I can move on. There are still hard days, and things that scare me...like Griffin graduating pre-school. The things that frighten me now, are the physical changes that tell me time is moving on. It stuns me into numbness, because I feel like time is the one thing I don't have...still....and probably never will. My baby, going in to kindergarten, knows who I am. He loves me unconditionally, and pretty much believes that I hung the moon. He receives my affection every day, and he knows, without a doubt, that I love him. But who will this same baby be, when he is in fourth grade, changing campuses at his school?? Who will he be when he goes to his first dance....who will he be when he is old enough to understand what HD means? Will my baby still know how much I love him, or will HD have changed all of that already??
I know that as I grow, and begin to flourish for the first time in a long time...that it is not without struggle or sadness. I might have a leaf, getting slowly eaten away by something unseen, that I have to eventually decide to break off so that the rest of me can be healthy. I might even lose a whole part of me for a time...wondering if I can actually survive. Change is never going to be something that I can avoid. But then, one day, a little bud of a new promise will reveal itself, and I will know that as long as I am alive, I have the opportunity to nurture and grow a healthy life. That I always have the chance to come back from darkness, and into the life giving light. And as I sit in this place, where I am able to reap the fruits of my labor, I can begin to be thankful once again, that I have the opportunity to be beautiful!
Tuesday, April 26, 2011
Giving HD a voice
Hello, all of my lovely and wonderful readers! I wanted to take a moment to thank every single one of you for the time that you take out of your busy lives to read my blog! And for those of you leaving me comments, I really do love getting feedback, in any shape or form, so keep them coming! When I started this blog, it was, as I have said before, because I couldn't find anything like it when I was desperately searching for someone to relate to. For a while, I thought that since I couldn't find anyone who was willing to be 100% honest about life with HD, maybe I could be that person...and be the voice for so many who have a hard time putting their struggle into words. And, for a good time after that, I talked myself out of it, thinking that there wouldn't really and truly, in real life terms, be anyone who would just come across the blog....and anyway, who would want to read MY story?? After all, it's just one perspective, one life among many who have their own stories to tell. And, so when I did finally start writing, it was out of pure frustration and pain, somewhere that I could come to spew how I was feeling, without really thinking there would be anyone else to read it, except for those friends and family who are closest to me. But, as I have continued to write, and continued my promise to be honest about facing the onset of HD, I have become more and more aware of just how much it is needed!
When I got tested for HD, I was only a couple of years past my 21st birthday. I remember feeling a sense of doom, as I couldn't help but ponder how my own very sick mother had lived with and suffered from the disease. There was already so much history with this thing we call HD. There had already been years of anger in my heart, and already having had to come to a place where I let that anger go. There had already been watching my mom have manic episodes, and then take me shopping the next day as if nothing had happened. There had already been days of wondering why mom had to take so many pills, and having to meditate on why she couldn't get out of bed for weeks on end. There was the fear that I would be just like her....HANDS DOWN, that was my biggest, and most present regret. I knew that I had HD, and for me, that meant being just like her...that meant isolating myself and turning away all my friends. It meant ostracizing my family, and being irate and sad and misunderstood every day of my life. And for me...that was something I just could not handle...something I could not wrap my head around. How could I...a loving mother and friend, and doting daughter, supportive sister, and sexual wife...turn in to this person I so feared? It just seemed impossible, and yet....I also knew in my heart that this is where I would end up.
So, life goes on, right? This was one of those times where we just have to keep putting one foot in front of the other. I had my children to keep living for, two precious and innocent babies that needed me. And so, I learned very quickly to live with the fear. About the same time, I began going to a Bible church here in Austin with one of my longest and most cherished friends. At the time, I adored it, because there were lots of young families, and women that were close to my age. It was only a few weeks after I got tested, that my friend, Becky and I, went on a women's retreat with this church. My head was reeling because of the positive test that I had just received, confirming my damnation....but this was not the only positive test I had had in that frame of time. I also discovered that I was expecting our third, and much wanted baby. So, I went in to it, not having any idea what the weekend away would bring, but just glad to be away from the house for a few quiet and peaceful days. So, we get there, and discover this amazing place we will be for the retreat. We are immediately spoiled, with beautiful cabins and even more breathtaking scenery. Making our bunks next to our good friends, as if we get to be kids at summer camp for a weekend! I was so glad I went, but I had no idea what the universe had in store for me, or how much my life would change that very day.
The evening "talk" began, after a lovely dinner and fellowship, and as soon as the speaker was done, she directed us all to break up into our small groups that we had been assigned to. Now, I will say that I knew none of the women that were in my group, so initially, I felt like I might not be able to open up. But as the conversation evolved, I became more and more convinced that I needed the help of these women, and so I told them everything. About my mom, about having HD, and about being pregnant. And as we almost always do when we have the opportunity to unload, I walked away from the evening feeling much lighter. But, the next morning, an older woman from my small group came up to me, with a baby in her arms, and asked me if we could speak privately. As we sat down, she told me, straight up, "I have HD too!"
I was flabbergasted. Utterly dumbfounded. And all of a sudden, things came full circle for me, and I understood why I was there that weekend. Over the next couple of days, I learned more and more about this wonderful woman that eventually became a cherished friend. She is older than my parents, with grown children of her own, and grandkids...the whole nine yards. But...the most striking thing about her at the time was that....she was so normal. She has an amazing spiritual relationship with God, and she was a true missionary. Planting churches around the country, and around the world. She had a special relationship with babies, and was one of the people entrusted with watching the tiny ones in the nursery during church... she definitely cherished new life! And as the months went by, she was my rock. She became my inspiration, reminding me that we are all exactly in life, as we are supposed be. When I told her I felt guilty that my tainted body was giving life to another soul, that might be tainted as well, she encouraged me, and instead directed my thought process to understanding what a gift it was to be bringing life into the world, no matter what the circumstances were. She and her sweet husband were the two people who braved the Katrina traffic to bring my family dinner when I was on bedrest, and they were among the first people I invited over to meet Griffin, after I birthed him at home. And I still cherish the inspirational gift she gave me that day which was a keepsake that simply said, "You are wonderfully made." And as we speak, she is in Africa on a mission from God, and has been for the last two years.
So, here is what I know from that experience. We all think we know what HD is going to be like for us. In my case, there was a lot of fear surrounding who I thought I had no choice about becoming. Until I met Frances. And she changed my LIFE! She made me realize that I AM in control, for as long as I can be, and that having HD doesn't automatically mean I become my broken mother. And through that gift, and having this wonderful lady in my life, I have come to know that it is our personal relation to people that makes a hell of a difference. All it took for me, was one special woman, coming to me to be honest, for me to realize I have a choice.
And...eventually, I chose not to be silent. And I hope, in a way, that me deciding to write this blog is paying it forward. Because I have realized that my honest words have made a huge difference in other people's lives! I wrote a blog a year ago, where I was so happy to relate that I had 18 followers. Today I have 37 full time followers, but last month alone, I had almost 1,000 hits. I have come to know through this blog, that the HD community is desperate for personal relation, to know that the things they experience are normal. But more than that, I have begun to hope that I can be somewhat of a trendsetter. Not only getting the message of HD out there for people who might not know what it is, but also for those of us who have it. It is imperative for us to be open about what we go through...because it is only those who have HD who we can truly relate to. And it is through these relationships, that we might realize things can be different for us....maybe, we can live differently. But, above all, we have to give this disease a voice, we HAVE to talk about how horrible it is, because that is the only way things are really going to change. It's the only way we are going to be able to continue living until we find a cure,
When I got tested for HD, I was only a couple of years past my 21st birthday. I remember feeling a sense of doom, as I couldn't help but ponder how my own very sick mother had lived with and suffered from the disease. There was already so much history with this thing we call HD. There had already been years of anger in my heart, and already having had to come to a place where I let that anger go. There had already been watching my mom have manic episodes, and then take me shopping the next day as if nothing had happened. There had already been days of wondering why mom had to take so many pills, and having to meditate on why she couldn't get out of bed for weeks on end. There was the fear that I would be just like her....HANDS DOWN, that was my biggest, and most present regret. I knew that I had HD, and for me, that meant being just like her...that meant isolating myself and turning away all my friends. It meant ostracizing my family, and being irate and sad and misunderstood every day of my life. And for me...that was something I just could not handle...something I could not wrap my head around. How could I...a loving mother and friend, and doting daughter, supportive sister, and sexual wife...turn in to this person I so feared? It just seemed impossible, and yet....I also knew in my heart that this is where I would end up.
So, life goes on, right? This was one of those times where we just have to keep putting one foot in front of the other. I had my children to keep living for, two precious and innocent babies that needed me. And so, I learned very quickly to live with the fear. About the same time, I began going to a Bible church here in Austin with one of my longest and most cherished friends. At the time, I adored it, because there were lots of young families, and women that were close to my age. It was only a few weeks after I got tested, that my friend, Becky and I, went on a women's retreat with this church. My head was reeling because of the positive test that I had just received, confirming my damnation....but this was not the only positive test I had had in that frame of time. I also discovered that I was expecting our third, and much wanted baby. So, I went in to it, not having any idea what the weekend away would bring, but just glad to be away from the house for a few quiet and peaceful days. So, we get there, and discover this amazing place we will be for the retreat. We are immediately spoiled, with beautiful cabins and even more breathtaking scenery. Making our bunks next to our good friends, as if we get to be kids at summer camp for a weekend! I was so glad I went, but I had no idea what the universe had in store for me, or how much my life would change that very day.
The evening "talk" began, after a lovely dinner and fellowship, and as soon as the speaker was done, she directed us all to break up into our small groups that we had been assigned to. Now, I will say that I knew none of the women that were in my group, so initially, I felt like I might not be able to open up. But as the conversation evolved, I became more and more convinced that I needed the help of these women, and so I told them everything. About my mom, about having HD, and about being pregnant. And as we almost always do when we have the opportunity to unload, I walked away from the evening feeling much lighter. But, the next morning, an older woman from my small group came up to me, with a baby in her arms, and asked me if we could speak privately. As we sat down, she told me, straight up, "I have HD too!"
I was flabbergasted. Utterly dumbfounded. And all of a sudden, things came full circle for me, and I understood why I was there that weekend. Over the next couple of days, I learned more and more about this wonderful woman that eventually became a cherished friend. She is older than my parents, with grown children of her own, and grandkids...the whole nine yards. But...the most striking thing about her at the time was that....she was so normal. She has an amazing spiritual relationship with God, and she was a true missionary. Planting churches around the country, and around the world. She had a special relationship with babies, and was one of the people entrusted with watching the tiny ones in the nursery during church... she definitely cherished new life! And as the months went by, she was my rock. She became my inspiration, reminding me that we are all exactly in life, as we are supposed be. When I told her I felt guilty that my tainted body was giving life to another soul, that might be tainted as well, she encouraged me, and instead directed my thought process to understanding what a gift it was to be bringing life into the world, no matter what the circumstances were. She and her sweet husband were the two people who braved the Katrina traffic to bring my family dinner when I was on bedrest, and they were among the first people I invited over to meet Griffin, after I birthed him at home. And I still cherish the inspirational gift she gave me that day which was a keepsake that simply said, "You are wonderfully made." And as we speak, she is in Africa on a mission from God, and has been for the last two years.
So, here is what I know from that experience. We all think we know what HD is going to be like for us. In my case, there was a lot of fear surrounding who I thought I had no choice about becoming. Until I met Frances. And she changed my LIFE! She made me realize that I AM in control, for as long as I can be, and that having HD doesn't automatically mean I become my broken mother. And through that gift, and having this wonderful lady in my life, I have come to know that it is our personal relation to people that makes a hell of a difference. All it took for me, was one special woman, coming to me to be honest, for me to realize I have a choice.
And...eventually, I chose not to be silent. And I hope, in a way, that me deciding to write this blog is paying it forward. Because I have realized that my honest words have made a huge difference in other people's lives! I wrote a blog a year ago, where I was so happy to relate that I had 18 followers. Today I have 37 full time followers, but last month alone, I had almost 1,000 hits. I have come to know through this blog, that the HD community is desperate for personal relation, to know that the things they experience are normal. But more than that, I have begun to hope that I can be somewhat of a trendsetter. Not only getting the message of HD out there for people who might not know what it is, but also for those of us who have it. It is imperative for us to be open about what we go through...because it is only those who have HD who we can truly relate to. And it is through these relationships, that we might realize things can be different for us....maybe, we can live differently. But, above all, we have to give this disease a voice, we HAVE to talk about how horrible it is, because that is the only way things are really going to change. It's the only way we are going to be able to continue living until we find a cure,
Monday, April 18, 2011
The physical brings pain, brings peace
Today I have started a project that I have been thinking about and planning for some time now. It's funny how we see certain things, after a loved one has passed away. Like the dress my mom bought me for my 20th birthday, that will never fit me again, but which I refuse to throw away now. Or the lamp that she had in her room as a child, that is now hoarded away in my closet for fear it will get broken. The PHYSICAL things, are things that I think help us along for quite some time after a death. If we can touch something that they have touched, wear something they wore, read something they wrote...then I guess we end up feeling like we won't forget. And I have definitely felt that about her clothes. Any of you that knew mom, know that she refused to wear anything but dresses. And while there are a couple I will keep to wear around the house, for the most part, they are not something I would ever make use of, even though so many were made from beautiful material. So we talked about just selling them....and...I just felt wrong about it. There are some that I can let go of, but her favorites, I have decided to keep to make a quilt wall hanging...which I started today. But when I went to start cutting her things to shreds, it brought back so many more emotions than I had originally thought might happen. I literally stopped and thought to myself, is this really ok? And so I told her out loud, "Mom, I feel really weird cutting your clothes up." And, a sense of peacefulness came over me, and I was able to continue, but not without millions of memories running through my head as I cut....especially memories of the very end.
You know, it's strange, when I think about the morning that mom died. Sometimes it all feels like a dream. I was briefly awake at 3:00 am, just minutes after she passed, but fell quickly back into an unusually deep sleep. My Dad had to call me several times before I woke up to take his call....and it wasn't a surprising call. I was expecting it, and a part of me was relieved that from now on, I didn't have to think of my mom anymore in terms of suffering or being in pain. So...as I traveled to the nursing home, I told her that I sure would miss her, but it didn't really hit me until I got to her room, and saw the body that she left behind. Now...hers is not the first dead body I have seen in my life. Our extended family is from a time and a place where viewing a person in their casket is normal. But, after my grandfather's death in 2000, I promised myself I would never subject myself again to an open casket. I totally understand that for some people, seeing the person dead brings a form of closure. But, for me personally, I find comfort in remembering the good times I have shared with loved ones. Seeing them dead only freaked me out. And ever since then, I have graciously bowed out of participating in that ritual. So, naturally I was curious in the weeks before mom passed, how I would react to SEEING her spirit gone.
Of course there were many days when I wondered if I would be the one who was there when she died, and I felt really uneasy about that. Mainly because I saw it as a privilege, and one that I might not necessarily deserve. What would dad and Cindy think if I was the one she chose to witness her leave the Earth? And I did realize that she might not want ANY of us there when she died...and seeing how one of us was there 24/7, I often gave her breaks, making sure I told her "OK, mom. I am leaving now, be back in a minute." And then going outside for 15 or 20 minutes to read my kindle, wondering if I would find her dead when I returned. But, it was just as beautiful as it should have been, the love story between my parents coming full circle. They grew up together, and they matured together. They brought life into this world, together, and they fought HD as a team. And it was my Dad who held her hand, and comforted her as she took her last breaths. It was he, who woke up because she was making strange sounds, and was there to tell her that we all love her and it was ok to go ahead and leave. It was a truly intimate moment, in my mind...a gift beyond imagination for my dad.
And so when I arrived that Christmas Eve morning, Cindy and her boys were already there. And of course dad was there. All of a sudden, seeing mom's body laying there in the same position that I had left her just 10 hours before, it really hit me. I had been being so strong for her, emotional, yes...but steady. And finally I was able to cry for her....with her. And I cried and I cried, and I kissed her face, and I told her how much I love her. I held her hand, which was finally relaxed after 20 years of chorea. I knew, without a doubt, that it was silly to be talking to this shell she had left behind. But I also wanted, very much, to touch her one last time. To uncover her crooked teeth that I had spent my life looking at, and catch one last glimpse of her beautiful green eyes that had been our only source of communication for so long. And after I cried, and calmed myself down again, I asked my dad, "what now?" He informed me that the funeral home was already on it's way, and I was instantly thankful that I had woken up and gotten there in time to be with the only form I knew her in, before it was ushered away.
And as if the universe knew that we needed a good laugh, we were granted that blessing in the form of the man who came to get mom. He reminded me SO much of a parody of a funeral man. I was seriously looking around the corners for the camera crew, who I was sure would jump out at any moment and reveal that we were being punked. He was in his 60's, had a jet black dyed, bouffant hairdo, which probably required many applications of hair gel. And he had a deep raspy voice, that only comes after years of one chain smoking. I automatically loved him, as he was kind and sympathetic, and handled things very well despite his outward appearance. And as he went to work on mom, readying her for the transport to the funeral home, he wrapped her up in the sheet that she was laying on. It definitely brought on images of a shroud to me...Cindy even whispered "It's like a shroud", in my ear...and that instant, I realized this was the last time I would see my sweet mom. What a weird thought that is...your parent...gone forever, taken away in a shroud to eventually be turned into ashes and returned to the earth that bore her. Of course we did some tentative planning for her memorial service, and things of that nature, and I mean...I knew she was dying, but the process of getting there, as a family, was so traumatic, we hardly had time to think past her actual death in terms of emotions. I know the exact shape of every single one of her glossy painted fingernails. I know where the cowlick is in her hair that aggravated her for her whole life. I know her scars, and the way her eyebrows grow. I knew every part of this physical body....and watching her go in my head, as I remember it, breaks my heart as much today as it did on that Christmas Eve. But then, the most beautiful memory fills my head with ease and brings me peace...just as the funeral man was about to cover mom's head with a blue velvet blanket, my Dad peeked through the opening of that shroud, and kissed my mom for the last time.
My mom, in the past few months, has become my hero. It took time, and experiences, and unfortunately, losing her, to realize how incredible she was. And even in death, she was not afraid to make the hard decision to continue being a hero. She donated her brain to the Harvard brain bank (http://www.brainbank.mclean.org/ ...this is a wonderful place to set up donation, if you are interested. The research is HD specific), and then the rest of her body was sent to Arizona, where another research facility took as many body parts as they needed. She was not afraid of losing her physical self, and I am so proud of her for that. I just miss it so...
You know, it's strange, when I think about the morning that mom died. Sometimes it all feels like a dream. I was briefly awake at 3:00 am, just minutes after she passed, but fell quickly back into an unusually deep sleep. My Dad had to call me several times before I woke up to take his call....and it wasn't a surprising call. I was expecting it, and a part of me was relieved that from now on, I didn't have to think of my mom anymore in terms of suffering or being in pain. So...as I traveled to the nursing home, I told her that I sure would miss her, but it didn't really hit me until I got to her room, and saw the body that she left behind. Now...hers is not the first dead body I have seen in my life. Our extended family is from a time and a place where viewing a person in their casket is normal. But, after my grandfather's death in 2000, I promised myself I would never subject myself again to an open casket. I totally understand that for some people, seeing the person dead brings a form of closure. But, for me personally, I find comfort in remembering the good times I have shared with loved ones. Seeing them dead only freaked me out. And ever since then, I have graciously bowed out of participating in that ritual. So, naturally I was curious in the weeks before mom passed, how I would react to SEEING her spirit gone.
Of course there were many days when I wondered if I would be the one who was there when she died, and I felt really uneasy about that. Mainly because I saw it as a privilege, and one that I might not necessarily deserve. What would dad and Cindy think if I was the one she chose to witness her leave the Earth? And I did realize that she might not want ANY of us there when she died...and seeing how one of us was there 24/7, I often gave her breaks, making sure I told her "OK, mom. I am leaving now, be back in a minute." And then going outside for 15 or 20 minutes to read my kindle, wondering if I would find her dead when I returned. But, it was just as beautiful as it should have been, the love story between my parents coming full circle. They grew up together, and they matured together. They brought life into this world, together, and they fought HD as a team. And it was my Dad who held her hand, and comforted her as she took her last breaths. It was he, who woke up because she was making strange sounds, and was there to tell her that we all love her and it was ok to go ahead and leave. It was a truly intimate moment, in my mind...a gift beyond imagination for my dad.
And so when I arrived that Christmas Eve morning, Cindy and her boys were already there. And of course dad was there. All of a sudden, seeing mom's body laying there in the same position that I had left her just 10 hours before, it really hit me. I had been being so strong for her, emotional, yes...but steady. And finally I was able to cry for her....with her. And I cried and I cried, and I kissed her face, and I told her how much I love her. I held her hand, which was finally relaxed after 20 years of chorea. I knew, without a doubt, that it was silly to be talking to this shell she had left behind. But I also wanted, very much, to touch her one last time. To uncover her crooked teeth that I had spent my life looking at, and catch one last glimpse of her beautiful green eyes that had been our only source of communication for so long. And after I cried, and calmed myself down again, I asked my dad, "what now?" He informed me that the funeral home was already on it's way, and I was instantly thankful that I had woken up and gotten there in time to be with the only form I knew her in, before it was ushered away.
And as if the universe knew that we needed a good laugh, we were granted that blessing in the form of the man who came to get mom. He reminded me SO much of a parody of a funeral man. I was seriously looking around the corners for the camera crew, who I was sure would jump out at any moment and reveal that we were being punked. He was in his 60's, had a jet black dyed, bouffant hairdo, which probably required many applications of hair gel. And he had a deep raspy voice, that only comes after years of one chain smoking. I automatically loved him, as he was kind and sympathetic, and handled things very well despite his outward appearance. And as he went to work on mom, readying her for the transport to the funeral home, he wrapped her up in the sheet that she was laying on. It definitely brought on images of a shroud to me...Cindy even whispered "It's like a shroud", in my ear...and that instant, I realized this was the last time I would see my sweet mom. What a weird thought that is...your parent...gone forever, taken away in a shroud to eventually be turned into ashes and returned to the earth that bore her. Of course we did some tentative planning for her memorial service, and things of that nature, and I mean...I knew she was dying, but the process of getting there, as a family, was so traumatic, we hardly had time to think past her actual death in terms of emotions. I know the exact shape of every single one of her glossy painted fingernails. I know where the cowlick is in her hair that aggravated her for her whole life. I know her scars, and the way her eyebrows grow. I knew every part of this physical body....and watching her go in my head, as I remember it, breaks my heart as much today as it did on that Christmas Eve. But then, the most beautiful memory fills my head with ease and brings me peace...just as the funeral man was about to cover mom's head with a blue velvet blanket, my Dad peeked through the opening of that shroud, and kissed my mom for the last time.
My mom, in the past few months, has become my hero. It took time, and experiences, and unfortunately, losing her, to realize how incredible she was. And even in death, she was not afraid to make the hard decision to continue being a hero. She donated her brain to the Harvard brain bank (http://www.brainbank.mclean.org/ ...this is a wonderful place to set up donation, if you are interested. The research is HD specific), and then the rest of her body was sent to Arizona, where another research facility took as many body parts as they needed. She was not afraid of losing her physical self, and I am so proud of her for that. I just miss it so...
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