Without delving into a part of my life not covered on this blog for a reason, I’ll say one thing. I love my dad more than I could have ever loved him if he had not developed this disease. Though Benson’s has caused us both frustration and suffering, it also has caused a time constraint, which cannot be ignored or avoided. When time is limited, we must take advantage of every moment together, and develop a special relationship, no matter the past. In my opinion, a terminable illness demands of us to let go of previous grudges—not forget them entirely, but let go—in order to make things a little easier for everyone. Ever since the day I found out he had an illness, our relationship has changed—and in my opinion, for the better. I think that once I was able to focus on the fact that we might as well make the best out of our time together, we clicked in a way we had never done before. Now, more than ever, we go out for breakfast, we take silly pictures, we dance, we laugh, and do so many other things I would have never done with him 6 years ago. As they say, for every bad thing, a good thing comes out of it. Of course, I wish my father was healthy—I wish he didn’t have to go through this awful progression. But I’m very happy with the closeness that the illness has brought upon us. I know I’ll look back and be proud of how we spent his last years together. If it weren’t for this disease, I know I would have felt so guilty, so resentful of the relationship we had growing up. In this tough time—in which he deteriorates—our fatherly-daughter relationship has blossomed, and allowed us a chance to make things right.
Sunday, August 30, 2015
Monday, July 27, 2015
dealing with physical separation
Without a doubt, the most difficult part of Benson's is communication. While texting is usually a problem for my father, due to his visual impairments regarding Benson's, I usually have the resources to call and visit my father easily. This summer, however, I am separated from my him by a sea. Never in the past have I been so physically separated from him for such a long period of time (6 weeks!). In such a situation where my communication is limited to mostly texting, there is an immense strain put onto our relationship, one that makes it nearly impossible to keep whatever glimpse of normalcy that we might normally have. Whenever I receive a text, I know it's not him writing it. I know it's not him dictating what to say either. It doesn't sound like him nor does it feel like him. Because of this, the regular distant relationship that we have is further distanced, the gap between us--caused by Benson's-- is only widened. I guess what scares me most is not the physical distance itself, but all of the possibilities of things happening in the time I'm away. With Benson's, the deterioration usually feels pretty gradual. However, when separated for nearly 2 months, things can seem drastically different upon return. In the past, 2 months has meant going from driving only during the day time, to being given a handicap sticker and stripped of the ability to drive in total. So naturally, I fear the unknown. I fear the many possibilities of change over a 6 week time period. But all I can do here is wait and try to suppress my fears, wish for the best, and look forward to seeing my dad again soon.
Sunday, June 21, 2015
a different happy father's day
In our society, father's day is comprised of barbecues, the giving of sports of barbecue related gifts, and a celebration of all the father figures out there. Seems lively. Surprisingly, when I looked up the history of Father's Day, I found a whole new meaning—one that spoke more meaningfully to me. In 1907, Grace Golden Clayton was mourning the loss of her own father when the Monongah Mining Disaster killed 361 working men. 250 of the men were fathers, which left an estimate thousand children fatherless. With the information, on July 5th, 1908, Grace Golden Clayton proposed to his pastor a day to honor of the fathers who no longer were fathers.
Since my gaining of the knowledge of my father's disease, Father's Day has always felt superficial. I watched as my friends celebrated Father's Day in the way our whole society does: celebrating their own dads. For me, Father's Day was always more like a memorial of the somewhat fatherly figure I once had. But that figure was long gone; now it was I who cared for my dad, not the other way around.
As I read the origin of the Father's Day, I began to feel more comfortable with the idea of Father's Day. It didn't necessarily have to mockingly "celebrate" the absence of a father I do not possess (in the sense that a father is an active figure of paternity). It is okay and perfectly appropriate that Father's Day—for me and I suppose many others who's fathers are either no longer alive or are no longer fathers in the traditional sense—is simply a day to remember and honor.
Though while growing up, my dad didn't always act like a father—something I don't talk about on this blog for it is purely devoted to talking about the father I have now—I use Father's Day as a way to recall those rare times he was a traditional father. I'm sure there are many people who's father never acted like a real father, and in that case, let Father's Day be what it is to those people, I won't speak for them. But for me, and I hope for others that this may relate to, let Father's Day serve as a premise for honoring fatherhood, no matter whether it's traditional, whether it's stereotypical, or whether it's completely different (as I know sometimes Mother's or Father's day is way for people to appreciate whomever their parental figure is, regardless of gender).
On this Father's Day, I'm honoring my own father for all that he is, not what he's not. Of course I could focus on how drastically different he has always been from other fathers, and of course I could focus on how strange it is to celebrate him as a parental figure, when most of the time I find myself taking care of him. But today, I am focusing on what he is— a funny, kind, humorous, and loving man who I love and am blessed to have in my life.
Happy Father's Day to all of those in our lives that we identify as a "father"—whatever that term means to each and every one of us.
Since my gaining of the knowledge of my father's disease, Father's Day has always felt superficial. I watched as my friends celebrated Father's Day in the way our whole society does: celebrating their own dads. For me, Father's Day was always more like a memorial of the somewhat fatherly figure I once had. But that figure was long gone; now it was I who cared for my dad, not the other way around.
As I read the origin of the Father's Day, I began to feel more comfortable with the idea of Father's Day. It didn't necessarily have to mockingly "celebrate" the absence of a father I do not possess (in the sense that a father is an active figure of paternity). It is okay and perfectly appropriate that Father's Day—for me and I suppose many others who's fathers are either no longer alive or are no longer fathers in the traditional sense—is simply a day to remember and honor.
Though while growing up, my dad didn't always act like a father—something I don't talk about on this blog for it is purely devoted to talking about the father I have now—I use Father's Day as a way to recall those rare times he was a traditional father. I'm sure there are many people who's father never acted like a real father, and in that case, let Father's Day be what it is to those people, I won't speak for them. But for me, and I hope for others that this may relate to, let Father's Day serve as a premise for honoring fatherhood, no matter whether it's traditional, whether it's stereotypical, or whether it's completely different (as I know sometimes Mother's or Father's day is way for people to appreciate whomever their parental figure is, regardless of gender).
On this Father's Day, I'm honoring my own father for all that he is, not what he's not. Of course I could focus on how drastically different he has always been from other fathers, and of course I could focus on how strange it is to celebrate him as a parental figure, when most of the time I find myself taking care of him. But today, I am focusing on what he is— a funny, kind, humorous, and loving man who I love and am blessed to have in my life.
Happy Father's Day to all of those in our lives that we identify as a "father"—whatever that term means to each and every one of us.
Tuesday, May 26, 2015
focusing on the abilities
It is infinitely easier to focus on the disability. It's almost automatic—instinctive so to speak—for me, a daughter of a Benson's syndrome patient, to constantly notice my dad's differences. And though it's much more comfortable to dwell on his difficulties, often, the best remedy to my uncontrollable emotions, is focusing on his abilities. Instead of getting down about his verbal struggles, his awkward behaviors, and his seemingly fragile physique, I search for ways to appreciate all he CAN do.
Tonight, I picked him up at his apartment. I watched as he stuttered on his words, couldn't remember simple things, and got confused about where we were. And yes, it made me sad. I got that inevitable feeling of tears beginning to collect in my eyes, that vulnerable and helpless feeling I hate. But I actively chose to get past it. I didn't want something that would never change to stop me from enjoying a night with my dad. So when we got home, I played some loud music, we danced together, laughed together, and just enjoyed each others' presence. Sometimes, with him, it's a lot easier for us both to express ourselves in ways other than words. Dancing around like goons, twirling each other around, and laughing at silly photobooth pictures of us—that helped us both.
While it's unrealistic to always be positive— to always solely focus on his abilities rather than his never-ending list of difficulties—once in a while, it's worth it to take a step back and just enjoy each other. Enjoy the fact that he has me to forever support him, enjoy the fact that after years of the bad father-daughter relationship we had growing up we can finally hold each other close and appreciate each other, and enjoy the fact that he is happy, through all the pain he endures. He's a happy guy, always smiling, always laughing, always loving. That is one product of his disease—it's made him a happy guy who appreciates everything good in life.
Tonight, I picked him up at his apartment. I watched as he stuttered on his words, couldn't remember simple things, and got confused about where we were. And yes, it made me sad. I got that inevitable feeling of tears beginning to collect in my eyes, that vulnerable and helpless feeling I hate. But I actively chose to get past it. I didn't want something that would never change to stop me from enjoying a night with my dad. So when we got home, I played some loud music, we danced together, laughed together, and just enjoyed each others' presence. Sometimes, with him, it's a lot easier for us both to express ourselves in ways other than words. Dancing around like goons, twirling each other around, and laughing at silly photobooth pictures of us—that helped us both.
While it's unrealistic to always be positive— to always solely focus on his abilities rather than his never-ending list of difficulties—once in a while, it's worth it to take a step back and just enjoy each other. Enjoy the fact that he has me to forever support him, enjoy the fact that after years of the bad father-daughter relationship we had growing up we can finally hold each other close and appreciate each other, and enjoy the fact that he is happy, through all the pain he endures. He's a happy guy, always smiling, always laughing, always loving. That is one product of his disease—it's made him a happy guy who appreciates everything good in life.
Wednesday, April 15, 2015
just an ordinary visit // expectations vs. hopes
Last week I received a call from my dad. He attempted to explain that he was dogsitting and that I should come over because I have always loved dogs. While it came out as, "I have a small pet you should come see," I understood and happily agreed to come over. Because it had been so long, I was a little bit nervous to see him. After all, he's always changing, his functions are deteriorating, and he's always reacting to his situation in a new way. It was nothing less than I expected. Sometimes I wonder, is he actually worsening or am I just expecting it to be worse and therefore having some sort of placebo effect? Either way, to me at least, a month or two can change him. For my own sanity, I tend to test the limits with him. For example, I ask simple questions and observe. Does he initially respond? How long does it take him to understand what I am asking? Does he fully comprehend it? This time, I ask the obvious. "How old are you?"
His blank expression answers my questions. But I don't push him, I let him take his time. One of the worst parts of having a dad with Benson's is moments like this. Waiting, with a mutual understanding of difficulty. He looks hopeless. But I wait, because I know, or at least I really really hope, that things will be alright. He'll answer, it'll be alright. He speaks.
"Fif..fifteen. Wait no. No no no. Well I will be sixty in June.. that makes me.."
He desperately looks around and his train of thought comes to a halt.
"What are you asking?"
"How old you are"
He could understand that he was one year less than sixty. But numerical comprehension is not easy for a Benson's patient. So he kept stuttering, trying to make sense of the age, but he couldn't. At last, I ended my questioning for the day. What did I expect? This is reality. What's next? I should have known, when last year at the end of my sophomore year, he asked if I was attending college in the fall. I should have known, when he missed my birthday. I should have known, when he stopped reading the paper. But still, for some reason, I hope for something different than reality.
Monday, December 29, 2014
normality // a new year
It's times like these where my dad's illness seems to dominate what should be normality. I see normal families everywhere. Normal families are together for the holidays. Normal families give presents to each other, normal families sit around and talk to each other. Normal families can gather and love and express and be normal.
I used to think it was the divorce. There were other families that didn't spend the holidays together. Many, in fact. But somehow, even with their degrees of separations, there still seemed to be a togetherness, even if split half and half. But with my family, even with the divorce, it isn't at all normal. The holiday parties are scary, I'm on my own. I feel like a care taker, watchful of my dad's moves, making sure he can finish his sentences in normal conversation. This year I avoided the holiday parties, after all, my dad didn't quite make an attempt to invite me to come with him. Instead, I received a quick call, telling me he wanted to meet up with me the next day to give me "a little something." I said yes, but he never called back the next day. Before I knew it, he was away on his own vacation. This is my normal.
This year, I've gotten used to many new things. Dealing with my dad in this past year was a journey. It was heart wrenching in the beginning, and I can't say with confidence that I don't still feel sadness every time Benson's Syndrome ruins something for him. But at least now, I've begin to come to terms with his illness, and he has too. We no longer pretend it doesn't exist. We no longer blame mishaps on him as a person. We now address it, talking about it (as much as we can), and we accept that the illness itself it at blame.
I'm ashamed of the way I dealt with my dad in the past. I'm ashamed that I outright called him a bad father. I wish I had known that the things I constantly hated him for—and yes, I told people I hated him—were things not in his control.
But I can't live in the past, mournful of all the time I wasted complaining about how we was always late, how my friends were embarrassed to drive in the car with him, how he stood me up on many occasions, how he didn't buy me nice presents for my birthday, how he forgot my birthday, how he misspelled 90% of the words in my birthday card. I failed to look past these mistakes, and see that he wanted to be there for me, he made an attempt at giving me something nice, how beyond the "I am so pripe of you," he was really, really proud of me. And for that, I am proud of him.
I have got to move past all of that.
Looking onto the new year, I am scared. I have no idea of what will hit him, what will change. Things were SO different with him a year ago, and I can't lie, I am terrified of what awaits him. But I am getting used to the fact that things are changing. The idea has settled in, and maybe it still feels uncomfortable—as it probably always will be—but I am ready for this change. I'm ready to deal with it in the best way possible. I'm ready to let go of all the bad feelings about him. I'm ready to love my dad for who he is, not hate him for his illness. I'm ready.
Lastly, before this year comes to a close, I just want to say thank you. This blog has been a great vent for me, and it's really helped me to accept what is happening, and treat it in a way I won't regret. Thanks to all those reading this now, and thanks to those who have given me any sort of support. Happy New Year.
I used to think it was the divorce. There were other families that didn't spend the holidays together. Many, in fact. But somehow, even with their degrees of separations, there still seemed to be a togetherness, even if split half and half. But with my family, even with the divorce, it isn't at all normal. The holiday parties are scary, I'm on my own. I feel like a care taker, watchful of my dad's moves, making sure he can finish his sentences in normal conversation. This year I avoided the holiday parties, after all, my dad didn't quite make an attempt to invite me to come with him. Instead, I received a quick call, telling me he wanted to meet up with me the next day to give me "a little something." I said yes, but he never called back the next day. Before I knew it, he was away on his own vacation. This is my normal.
This year, I've gotten used to many new things. Dealing with my dad in this past year was a journey. It was heart wrenching in the beginning, and I can't say with confidence that I don't still feel sadness every time Benson's Syndrome ruins something for him. But at least now, I've begin to come to terms with his illness, and he has too. We no longer pretend it doesn't exist. We no longer blame mishaps on him as a person. We now address it, talking about it (as much as we can), and we accept that the illness itself it at blame.
I'm ashamed of the way I dealt with my dad in the past. I'm ashamed that I outright called him a bad father. I wish I had known that the things I constantly hated him for—and yes, I told people I hated him—were things not in his control.
But I can't live in the past, mournful of all the time I wasted complaining about how we was always late, how my friends were embarrassed to drive in the car with him, how he stood me up on many occasions, how he didn't buy me nice presents for my birthday, how he forgot my birthday, how he misspelled 90% of the words in my birthday card. I failed to look past these mistakes, and see that he wanted to be there for me, he made an attempt at giving me something nice, how beyond the "I am so pripe of you," he was really, really proud of me. And for that, I am proud of him.
I have got to move past all of that.
Looking onto the new year, I am scared. I have no idea of what will hit him, what will change. Things were SO different with him a year ago, and I can't lie, I am terrified of what awaits him. But I am getting used to the fact that things are changing. The idea has settled in, and maybe it still feels uncomfortable—as it probably always will be—but I am ready for this change. I'm ready to deal with it in the best way possible. I'm ready to let go of all the bad feelings about him. I'm ready to love my dad for who he is, not hate him for his illness. I'm ready.
Lastly, before this year comes to a close, I just want to say thank you. This blog has been a great vent for me, and it's really helped me to accept what is happening, and treat it in a way I won't regret. Thanks to all those reading this now, and thanks to those who have given me any sort of support. Happy New Year.
Sunday, November 16, 2014
it's how you deal with it that matters
Like any disease, my dad has his good days dealing with Benson's and his bad days. Yesterday, while having lunch with my dad, he could barely articulate himself. I'm used to these days. And while it kills me every time I see him struggling to maintain a conversation, it's no surprise to me. Nevertheless, I guess my facial expressions showed some impatience or frustrations. After his many efforts, my dad simply paused and said, "I'm sorry I make no sense." There was no half joking smile on his face, he was serious. To see my own dad come to terms with his illness made me feel helpless. There was nothing I could say to make him feel better about what was happening to him, all I could do was say, "there's nothing to be sorry about," and hope to give him some support. I can't help but to notice him hurting, almost ashamed with himself. It's hard, to see someone you love and have grown up seeing as the one you need most, need you more. He later told me how he misses driving. I could see his own hopelessness in his face. A part of me felt mean, driving him around, ordering lunch for him, and helping him say things, because I know he feels embarrassed to need me in that way. I don't want to make him feel like he can't do anything, it's just the way it is. It's the only way I can help. At that moment, I realized something. There's nothing I can do to heal him, there's no way I can single handedly save him from an inevitable downfall. And I can't pretend there is. I can't be happy with the shit in my life, or in his, but I can be happy with the way I deal with it. This isn't a new thought though, I've been feeling this way for a while. A couple of nights ago, filled with lots of emotions and feelings, I just jotted down everything I was feeling. I think it relates..
we can’t live in dreams of optimism and happiness because at some point realism is gonna hit you and you’re not gonna have a plan. I’m not gonna sugar coat everything. some things suck. its how you deal with them that matters- how you can look at a situation not with fear because you don’t know how to not be optimistic, but rather with open eyes and a willingness to accept pain and some shit. so I’m happy not with everything around me, but I'm happy with how i deal with it. i can’t control everything around me, but i can control me, and my attitude and reactions to everything else.
There's no reason for me to be hopeful and optimistic. I know how things will unravel. The only thing I can do is deal with his deterioration in a way which I will look back on, when it's all over, and be happy with. I wouldn't want to look back and feel like I missed out on an opportunity to try and be there for him. I wouldn't want to feel like I left him in the dark, alone. I'd rather know that while yes, he was in the dark, I was there too, right beside him, holding his hand, caring for him, hugging him, telling him I love him, and doing my best to make him feel 100% supported and loved. Because he is. And he will always be.
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