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.

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. 

anticipation gone wrong

The last post was left on a hopeful note. With all the support I had received, I felt ready to do something kind of big. I hadn't been to my dad's house in months. I texted him the details (I would be dropped off at his house, and I would drive us somewhere together in his car), and it seemed like he was okay with the plan. With much anticipation I was dropped off at his house the next day. As my mom drove away, I got the usual feeling in my stomach, "this isn't gonna work." For a split second, my mind filled with negativity. In that instant, I imagined how wrong this could go. But soon enough, I was back to feeling excited.

At first, I texted him. No reply. Then I called. No answer. Finally, I looked into his apartment to see the lights off. No car was to be found. Suddenly, it seemed like reality slapped me in the face. I was embarrassed, almost angry at myself. How could I possibly be so dumb to think that this quickly organized plan was going to work out well. In all the glamour and happiness of finally getting recognized by peers as brave for doing this all, I forgot that it wasn't all that easy, and sending my dad a text the night before these plans were due wasn't going to fly. 

I picked up my phone one last time. With no answer, I hung up and called my mom. "Can you come back? I left something in the car." I couldn't bring myself to tell her that my "ingenious" plan had failed. When she pulled up angrily, I signaled her to get into the passenger seat of the car, and I drove away in shame. Minimal questions were asked-- after all, my mom didn't need to ask any questions to know that my dad wouldn't follow through with simple plans. While everyone was at my dad for standing me up, I was only upset with one person- myself. 

When I arrived home, I went upstairs. About 2 hours later I received a text from my dad.. it was the usual "can you call me?" He never had the conversation over text, that was too difficult for him. I should have known. On the phone, he was completely confused when I explained what had happened. Apparently, he had no recollection of me saying I was going to drive over; he hadn't even had a car available for me to drive. While his text the previous night may have read "okay," his mind read blank.

"Honey..see with my thing... it's difficult for me to read the text messages...you need to call instead..." 

I hate when he has to bring up how the illness screws things up. I feel bad for making him say it to me, slowly, in an embarrassed tone. I should have known. 

The anticipation can really mess me up. It blinds me from reality, and makes me forgot how plans with him have always fallen through, and they may always fall through. 

I'm going to try to see him again soon. This time, I'll try to be more clear with what's happening in order to avoid these types of conflicts. 

...and so it begins

Yesterday evening, I sat in front of my computer debating whether I should click the post button on facebook. I wasn't sure if I really wanted to share something so personal with everyone. After much thought, I realized that maybe this part of my life would be exposed, this secret that I always kept wouldn't be such a secret anymore. But I also realized that this wasn't about keeping secrets, or bottling up the parts of my life that cause sadness. Sharing this part of my life was going to be a good thing, something that in turn, benefits my dad, other's dealing with Benson's, the audience that would be enlightened on the disease, and me too. I know that getting these feelings out will help me too. Having an outlet for this journey will be a good thing.

After the initial tears, and "what did I just do" thoughts, I sat back and waited. And almost instantaneously, my closest friends were texting me. They were proud of me, and believed in me. They told me that I was brave, and told me that I was going to change people's lives. Though this seemed extreme to me, I appreciated the validation and confidence they gave me. It helped me get through those initial fears and worries. 

From the friends who sent me long paragraphs about how proud they were, to the people who simply liked and shared my post, I want to say thank you. If it weren't for you, I wouldn't have had the confidence to continue this. Without your support and love, I wouldn't have gotten 2000 views on my blog only a mere 24 hours after that first scary post. It's incredible, and it's because of the people who believed in me!!!

Your support has inspired me. I've taken on this challenge with excitement. I feel fearless. 

Today, I got a text from my dad. This isn't a rare event, but I really hadn't heard from him much in a while. In fact, I haven't seen him in almost a month, which is unusual in itself. Without a fear, I asked him if we could spend time together tomorrow. I told him when I'd come over, what we'd do, and for the first time, I wasn't mad that he wasn't the one asking me to spend time with him. I didn't feel anger towards him for not expressing his want to see me. This time, I felt eager to reach out to him. To make plans, and to take matters into my own hands. I know that this excitement to spend time from him comes from the confidence that you all have given me through support. 

I couldn't be happier. I've always felt so alone in dealing with this. With the knowledge that so many people are interested in my journey and want to support me through it, I suddenly feel like I have a safety net behind me,  there to catch me if I fall into a difficult challenge. So thank you. 

finding out that your dad has a form of dementia

It was February 2012.
I had been waiting for what seemed like forever for the weekend my camp friend Ellie would visit me. She had flown in all the way from Washington, D.C., and I was more than excited. Since her flight got in around 11 am, I left school early to pick her up at the airport. (I was in eighth grade at the time). My mom couldn't get out of work, so my dad was going to drive me about 30 minutes to pick up Ellie. I sat in the car, filled with the good kind of nerves. I hadn't seen Ellie for about two months, and she was my best friend. My dad made an effort to point out many "landmarks" on the way there. He would occasionally slow down to say "That's a tobacco field, this town is known for its tobacco." I tried my hardest to seem interesting, but all I could think about was how amazing the weekend would be.

All of a sudden, my eyes flashed down to a small compartment under his car's radio. I noticed a pill bottle, the orange kind. Being the anxious and curious 13 year old that I was, I quickly and nonchalantly examined the bottle. I had recently seen a T.V. show where a man discovered his dad's disease by picking up the wrong bottle of medicine at the convenience store. It was an emotional scene, and I imagined what kind of disease I could possibly discover about my dad. Would it be depression? Would it be high blood sugar? Boy, did I want to know.

The name of the medicine was complex, but what medicine name wasn't? Without hesitation, I pulled out my blackberry and went to google as soon as my cell service could provide. I put in the medicine's long name and it brought me to the wikipedia page for "Benson's Syndrome."I had never heard of this before. Half of me was nosey and interested, the other half terrified of what I might discover. After reading for about three seconds, I spotted the words "dementia." That was it. Everyone knew dementia. The disease where old people forget things, and people say "oh he's old, he's a little bit 'off'".

How could this be? My dad was in his mid fifties, and he seemed to remember most things. Sure, he picked me up late from dance practice and sometimes called me by my sister's name, but he didn't have dementia!

I read on. I read about the visual processes being affected, the difficulty with numbers and words. I was fascinated and horrified. It was real- he had this illness. Why hadn't he told me? Why hadn't my mother told me? (Turns out I was the one to inform my mother, she hadn't even known yet...)

This was the beginning of my journey. I started here, naive and afraid.