worries for next year // absence

I apologize, It's been three months since I've posted last. The reason is highly predictable for a high school senior; I've been spending every moment working on either school work or college applications. It's been a uniquely stressful year so far, mostly because of the out-of-control nature of college applications. I've never liked things out of my control—like my dad's disease. I react to these challenges with confrontation. In my dad's case, I became more focused on developing our relationship, I reached out to others in a similar situation, and I created this blog to let out my emotions. It's the same with this helpless college situation in which I can work so hard, but truly cannot predict or know the outcome of my work; I have spent so much time trying to perfect supplements, keep my grades up, etc. Unfortunately, all of this work has taken a toll on my relationship with my dad. I find it hard to balance our relationship with the stress of school work/college applications. So there's not been much to talk about here, since I haven't spent much time with him at all in the past three months.

Then I thought about this exact situation, and immediately knew what I wanted to discuss here. It's exactly that fear—the worry that my relationship will deteriorate as my work increase. And as I finally hit the submit button on Common App, I feel nervous, what will happen next year? All my life I've lived only a few miles from my father, and still, there has existed a challenge in spending ample time with him, due to school work, dance, and all the other things I put time into. I worry that next year, in college, we won't be able to maintain any sort of relationship. After all, he cannot text nor email, and sometimes even phone calls get stressful when he is having trouble conversing.

Wherever I end up, I know two things. First of all, I cannot let my fears and anxieties about my dad get in the way of my enjoying being away from home. It's really important for me to be able to know things are okay regardless, and be able to live in the moment where I am. Secondly, I will just have to make a conscious effort to spend time with him when I come home, call him as much as possible, continue blogging to relieve any frustrations.

I once again would like to apologize for the absence here. It has only given me time to focus a little bit less on my emotions and a little bit more on my work, which isn't great, but is necessary during such a stressful time.

If you are celebrating Christmas, Merry Christmas. If not, like me, I hope you're enjoying a day off.
xoxo

Updates // Through His Lens

This blog has always been written through the lens of the daughter of a patient with Posterior Cortical Atrophy. For a while now, it's been my intention to share something written through the lens of the patient himself, my father. Because of his condition, he no longer can write. So, over the past month I've compiled some of the things he comments about his disease. Often, his speech doesn't make much sense to those who don't know him well. But after years of dealing with this, I've become a pretty good translator of the messages he's attempting to convey. I have no intentions of mocking the disease, or his speech—only to be true to what he wants people to hear. So here are some of his own thoughts regarding his disability. 

About a month ago, my dad and I sat down for breakfast together. We began to discuss his upcoming visit to a special lab in Massachusetts. He's always very hopeful—in most cases, too hopeful—about the fate of his disease. With difficulty, he rambles about his hope to drive again, read again, and speak easily again. It's really hard to hear, and it almost seems like the world is against his positivity Because, in all reality, the disease isn't going to go backwards. It's just not. In the nicest way possible, I reminded him that it's a lot more realistic to hope that things just don't progress any further. 

"If everything stops here, it'd be love."

That's his way of saying that if nothing progressed further, if he continued the way he is now, he'd be more than content. Not reading, driving, speaking easily, or writing is far better than the alternative: the unknown. This unknown could scares us all. He could stop recognizing my face. He could forget my name. He could stop speaking at all. Everything we deal with now seems perfectly okay compared to all of that. 

"No one really knows what to do."

Although we hope there's no further progression, no one really knows how to stop it. My dad always stresses this point, it's really un-researched. It's really rare. And as of now, the best he can do is take 2 pills a day, that, to the best of my knowledge, aren't PCA specific. After his visit to a lab in Massachusetts, he reflected on his trip. 

"Nothing." 

After the whole hype surrounding this trip to a lab, he came home with exactly what everyone didn't want to here. The doctors told him that they had seen a few other patients with the same disease. They also told him that there's nothing they could do. Nothing at all. So we just wait. Wait for the next opportunity to hope for good news. It's a frustrating cycle of events. Hope, get news of an opportunity, get let down. 

"I wanna see you as long as I'm alive."

This doesn't need much explanation. I also wanna see him as long as he's alive. And I will see him, as long as he's alive—no matter the condition of functionality of him. I'll be there, also hoping.

For the first time, an acquaintance of my dad's walked over to me after Synagogue on Wednesday, and asked if he has a safe way of getting home. I never realized that other people really notice his disability to that extent—worrying about how he'll get home alright. But I assured the man, yes, he'd be alright. And yes, I made sure he was. I'm glad to take care of him. And at the point of progression we're at, I'm glad that others are now realizing that he is the way he is not because he's "stupid," but because he has a disability. I'm glad people care. I'll always care.

for every bad, a good

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. 

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. 

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.

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.

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.