Black Hole

(Tori's Training Log ... and general musings)
Warning: this one might get heavy so if you're the weepy type and not in a "safe" place, you might want to wait and read this later.

It was very strange today walking in to work without my gym bag. I felt so light and kept feeling like I had forgotten something! So with no training to talk about, I figured I'd think a little about why I'm doing what I'm doing.

There is no way to truly describe what it feels like to lose someone to Huntington's Disease. It's not just one loss, but a series of losses, one after the other. And it never stops. You get used to what your loved one has become, and mourn the loss of what's gone. Maybe they can't drive anymore, or their personality has changed, or it's suddenly more difficult to have a conversation with them. Over time you realize this is your loved one. You adapt, and love them for who they are now, because that's what families do. And just about when you've learned to become ok with the status quo, BAM! here comes another one. I look back to 1996 when we went to a family reunion in Montana. I remember at the time I was having a lot of difficulty with the changes that were happening to Bob, although I worked my hardest to not show that to him. But I look back now and think if we could have just had that Bob from there on out, that would have been great.

Mourning the death of a loved one is tremendously difficult. Watching the slow decline of living loved one is torture. When someone is gone, you can cry and tell stories, and talk about how hard it is. When someone is still here, but not the way they used to be, you have to be brave and remember that even though they've lost things, they are still alive, and living their lives as best they can with what they have left. It's such a contrast and can really mess with your head.

In some ways it was easier with my Dad. I lived in Rochester, NY and was only able to come home on occasion. Those times were filled with emotion, good and bad, and I would return home and recover. But then there would be a big gap of time where I'd live my life and could pretend like this wasn't happening to my family. But with Bob, I lived nearby and worked even closer, and was able to go up and see him and my mom every other week. On Thursday I'd leave from work and go have supper with them and spend the evening, and come back to work from there in the morning. I will always treasure those times I was able to spend with him. I was able to maintain a relationship with my brother, in whatever form he took at the time. I was able to see that regardless of what happened to him, his soul was the same, and I took comfort in being able to recognize that. But you know what? It's hard. Some nights I would sit with Bob, laugh and joke, and while on the one hand I was enjoying the time, on the other hand I was using all my might to avoid breaking down into tears in front of him. It is a grief so profound it is impossible to describe. But you can't show it. Not until later.

Thank god for my friend Jim, who would be waiting in his office on Friday mornings to help put me back together again. I would usually be weepy driving to work but be able to hold it together so I could arrive at work and be able to function. After downloading with Jim I would go about my day as if nothing was wrong, although looking back those Fridays were a lot more sluggish than usual. The drive home is where it would all come out. A full hour drive and sometimes I would sob the whole way home. That's where the title "Black Hole" comes from. The grief in those times was that profound. I remember thinking "how can it possibly hurt this much?" But it did. And there was nothing I could do about it. Thank god for Aric too, who would be waiting at home to patiently piece me back together again.

Deep breath. Shake it off. Move on. Get ready for the next round. Repeat. Repeat. Repeat.

Through all of that, these people that were shrinking away from me maintained their identities and continued to have much to offer right up until the end. My dad had his sense of humor and kept telling jokes until he couldn't tell them anymore. But you could tell them to him and get him to laugh! He was always excited about what was going on in my life, and would push me out the door when my visiting time was over. Even though my visits were only occasional, when it was time for me to go back to my life he made sure I knew that he wanted me to and it was ok leave him. And the next time I saw him I always got a big, enthusiastic "HI!" when I walked in. And even as he was losing his battle, Dad was able to make his friend Fred feel special, when that was what Fred needed most of all. So it's not all bad, and these times are what send a tiny crack of light into that black hole to remind you all is not lost.

Bob never stopped being quirky and I love that. He was playful and funny and like my dad, always interested in what I was doing. He was proud to hear of my accomplishments and enjoyed hearing about my life. He was able to make everyone feel special and unique, and he was fun to be around. And he milked whatever he had left for all that it was worth. I know of healthy people with everything going for them that don't get one tenth the enjoyment out of life that Bob did. Every time someone would ask him how he was doing he would always answer "great!" and you knew he meant it.

When Bob died, it was sad and hard, as you'd expect. But not exactly in the way that I expected. I had mourned each piece of him as it was lost along the way, so his death just meant the mourning of the core piece of him that was left. Don't get me wrong, that's big, but I guess what I'm trying to say is that the full force of it didn't hit me all at once. Thank god, as I think that might have done me in. But what that meant for me is that his funeral felt incomplete. It was the mourning of that last piece, but I wanted to put it all together and celebrate the whole Bob, and do something that celebrated his entire life. You can't do that in an afternoon in a funeral parlor. Well, you can (because we did) but it didn't feel like enough for me. So I signed up to do this. It pulls in people that were important to Bob, and creates the sense of community that always seemed to be humming around him. And it's been going on for a while, which gave me a longer celebration period to focus on. And I spent a lot of time running where there's nothing to do but think. So that gave me time to be with Bob in my head.

So this is my sendoff to Bob, which feels more fitting to me. Big and bright and powerful. A supernova to offset the black hole (and some space references to keep Bob entertained). Bob ... I love you and miss you and hope you have been enjoying watching all of this unfold. Hopefully you can be there with us on Sunday and feel the love of everyone whose lives you touched. :)

(Tomorrow I promise to just talk about race prep and excitement for Sunday. No heavy stuff, I promise!)