Wednesday, May 4, 2016

Inside Out

Sometimes I can't believe this is my life, and usually it feels pretty surreal. Sometimes I feel sorry for myself, but I can't let that last long. We always said that we felt lucky and that it could be worse, so I shouldn't feel sorry for myself. I genuinely believe those things. My brain has been full of contradictions.

Core memory A: My husband died from a horrible disease at the age of 36. That is awful.

Core memory B: We were able to do amazing things because of that illness. And we were able to put aside all (nearly all) the pettiness and bickering that comes with marriage, and life, and life with small kids, and just be together in an incredible way.

How can those two coexist? Would I rather have more time with Tony? Absolutely. But would I give up the quality of time that ALS gave us? Nope. Trying to solve that paradox was making me a little crazy.

In the end, it's not a choice I had to make. Why pester myself about it? There is no "fair" in life, there is only the life you get. And it's up to you to make the best of that life, every day. A really shitty thing happened to me, but mixed up in that were some incredibly wonderful things too. They don't cancel each other out or conflict with each other, they are both part of my experience.

I miss Tony, and I always will. I feel incredibly lucky to have loved him and have his love in return. I'll keep that joy and sadness together in my heart. I am stronger when Joy and Sadness work together. And I'll keep making new core memories.

P.S. If you haven't watched the movie Inside Out, you really really should.

Tuesday, April 19, 2016

Avoiding the Spotlight

I have never liked being the center of attention. I am quite happy to work away in the background and let someone else stand in the spotlight.

When Tony made the decision to share his journey with ALS with the world, I'll admit I was apprehensive. I wouldn't have told people until we had too... he wanted to be completely open. He was right, of course. Sharing our journey brought so much goodness into our lives, and hopefully raised awareness of ALS (this was 3 years before the Ice Bucket Challenge). Even though I hadn't agreed, I supported Tony's decision and entered the whirlwind with him. At first, he managed everything, and I was just occasional support staff. As his ALS progressed, I started helping more... I helped with the Conway Cup, he dictated blog posts to me, I wrote thank you notes, etc.

The when his voice began to go, I had to step up again. I had to speak for him in public, and the best example is when I read his speech at the 2014 VMI Men's Soccer senior banquet. He peppered the speech with French phrases, because he knew I have horrible French pronunciation... a classic example of Tony's humor.

So, I gradually had to come out of the background to support Tony. I was happy to be able to help.

But now, it's just me. I am the main organizer of the Conway Cup, but I certainly couldn't stand up and make a speech when the trophy was presented. I was hit with an unexpected flood of tears when someone mentioned being lucky enough to play with Tony. But I know it probably should be me... I should stand up and talk about how much soccer and the day of the Cup meant to him and how thankful we are for everyone's support. Maybe next year...

I am now the author of this blog, which was Tony's communication with the world for years. I don't know how many of Tony's readers still come back... but my posts often get more than 200 views.

And I am the steward of his legacy... and that means I cannot just work away in the background any more.

There are lots of ways life changes you... and many of us might not even recognize the 20 year old version of us. Certainly, many things in my life have changed me... Tony, motherhood, and ALS being the biggest. I'm going to work on my public persona... get better at standing up and speaking out. For me and for Tony. If you are a future victim of my pathetic attempts at small talk... I apologize in advance!

(So watch this space for an announcement soon!)

Thursday, March 24, 2016

A moment

Sometimes, in the midst of the turmoil... after a long day... way past regular bedtime... in the middle of a Peter Rabbit story... there comes a moment of pure contentment. When everything seems right in the world, and the most important things are all within your grasp.

I cherish those moments.

Monday, March 21, 2016

Large and Not so in Charge

One of the things that scared me most from the time of Tony's diagnosis was the idea of being a single parent. Of course, the loss of Tony impacts my life in a thousand ways... but I'm just going to focus on this one part right now.

Not too many people set out to become single parents, and it's usually an unpleasant situation that makes them one. I certainly know I am not alone, and I don't know anyone who would say that being a single parent is easy. Knowing that does make me feel a little better, but it doesn't make the job any easier.

Right now, I have a lot going on. I'm organizing for the Conway Cup, I'm helping organize an event at Louise's day care, I'm on a board... and maybe I got myself in over my head. But the thing that seems to wear me down the most is parenting. I love my girls more than anything, and I can't imagine what life would be without them... but sometimes the thought of a weekend when we have nothing planned scares the daylights out of me. How am I going to survive those two unstructured days?

They fight, they ask for things, they want to watch TV, they play nicely together, they want to watch TV, they are bored, they ask for things... and repeat, repeat, repeat. That just covers the first hour they are awake. I am thankful for every day that I have with them, but I feel like I need to go to bed about 15 minutes after they do. (If you try to call me after 8:30, you've probably called too late)

The future is a dim and murky place and when I think about wrestling two girls through adolescence by myself... urgh. I won't even go there. I suppose some things will get easier... I won't always have to make their breakfast and wonder what disaster they are creating when they get quiet. But, other things will get harder.

I know I'm lucky to have them. I know I'm lucky I don't have to work right now. I know I'm lucky they have good schools to go to. I know I'm lucky in so many ways... but I'm also tired, so tired... and I know I'm earning those grey hairs I'm starting to see. I guess you can be lucky and worn out at the same time, and that's me. I hope it's not this hard for 14 more years... one day at a time has gotten me this far though...

Thursday, March 10, 2016

Rat History

I filled out the paperwork and officially re-entered the working world this week. I am going to be a part-time tutor to cadet athletes (the fancy term) at VMI.


First year students are loving known as "rats" at VMI, and they are required to take two semesters of world history... which is known as "rat history."VMI is a school that focuses on engineering, and so apparently a lot of rats struggle in those classes. Now, I can swoop in to assist them!

I haven't actually tutored anyone yet, but after mid-term grades come in, there might be a few requests for my help. I'm really looking forward to it.

I was excited to claim that I was once again gainfully employed, and at first, I felt silly. It's just a part time job, after all, and one for which I should be very well qualified. But then I stopped to think about it for a minute. It is really a huge moment in my life. I've been unemployed for nearly three years.... three of the most important years of my life. First, it was thrilling to be hired in a job (someone actually wants me to work for them?). Second, this is a huge step for me, at least symbolically. I'm reclaiming a part of my identity... a part of me that is not a caregiver... a part of me that had to be put aside in the last years. I never understood work in that way until I gave it up, first to spend a year with Cora when she was a baby, and then to take care of Tony. Maybe it's just because teaching is such a special profession (in both good and bad ways), but it was a part of me that I missed when it was gone. Maybe I wouldn't feel the same way if I was a digger of ditches. Maybe I would still be damn proud of those ditches (look at those ditches I dug!)... I don't know.

Anyway, I am embracing this moment, and being damn proud of my part time job. It's a job, and it's a step toward the future. I never could have imagined I'd have a job at VMI... you just never know what the future holds.