Update. September 2013.

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Recently a number of people have reached out to Cara and me to check on how I’m doing.  We continue to be touched by people’s concern and decided one way to keep people up to date is through a blog.  Yes, how 2007 of us.  This is not to say we do not appreciate notes.  Keep them coming!  It is just another way to keep people up to date. I am not sure how often I will update it or what all I will write about, but I thought I’d put it up and see how it goes.

It’s been over six months since I was diagnosed.  I am thankful that my symptoms seem to be progressing very slowly. I went to the doctor a few weeks ago and he said everything other than my hands and arms seems fine.  The hope is (and it is possible) that it stays that way for years.

My hands and arms continue to get slightly weaker, but the rest of my body feels fine.  My legs and feet feel funny sometimes.  Not weak, just a little awkward. I can still carry James around the zoo in a bjorn for two hours each week without my legs bothering me.   When I am sitting or walking, I feel like I could sprint or jump, but if I try, I feel like a baby giraffe.  I can still do everything I want to do without too much difficulty.  I have trouble getting things out of my pockets and drop the coins when cashiers hand me change, but nothing we can’t work around.  My hands get tired typing, but dictation software is surprisingly good.

I have participated in a couple of research studies, but no drug trials yet.  I am hoping to join a trial in Augusta in a couple of weeks once they get their last approvals completed.  This was a trial I first heard about in May and they still are not enrolling patients yet.  Crazy how slow the process is given the life expectancy of pALS.  Most studies only take patients within two years of diagnosis.  I’m more than a quarter of the way through my eligibility!  I have started helping out with a non-profit that is trying to address some of these issues.  In the future I will explain more about ALS Emergency Treatment Fund (www.alsetf.org).

Otherwise, life is good.  I hadn’t taught since last fall and teaching is less tiring than I feared. Even after a three hour lecture, I probably feel less tired than my students. My handwriting is getting worse and worse, so at some point I’ll have to change my style, but I still enjoy it.  I am still interested in preparing lectures and trying to see if I can make the material interesting to a small group of students who get my jokes.

The tough part is just dealing with the uncertainty.  Health wise all signs have been positive since the diagnosis, which obviously we are thankful for.  If you had told me 6 months ago Id feel like this today, I would of taken it in a heartbeat.  Still, having no idea what life will be like in the coming years takes a toll on the fam.  Cara is a planner.  She has always figured out where she wanted to go, what it would take to get there, and then done whatever it took.  Now our lives are up in the air.  Not the easiest adjustment. But again, even on the mental side, I think we are doing better than ever would have hoped, but that is just not to say any of it is easy. There is a balance between continuing to live our lives and dealing the reality of the diagnosis.

It’s balancing act at home.  We have this new normal. We are getting used to that.  Used to not being able to plan for the next 5 years or 10 years.  However, we still must continue with our lives.  Laundry still needs to be done. The grass still needs to be mowed. Dinner still must be made. The kids still may wake up sick or not want to go to bed or melt down because they are normal 18 month old or 3 year olds (http://jasongood.net/365/2012/12/46-reasons-why-my-three-year-old-might-be-freaking-out). It is a balancing act for me as I have to figure out new ways to help keep things going.  If I’m not going to be the handy man and am going to rely more on my wife for little things I used to do, where do I make up for it?  How do I make sure I am not just throwing one more ball at her to juggle? We used to have a solid 40/60 split, but the scales are slipping.  i need to figure out ways to stabilize them before they get too far off.  Before its 20/80, 10/90, -20/120, then back to 0/100.  Someday I may have no choice, but for now I need to figure that piece out.

It’s a balancing act in terms of publicly acknowledging I have ALS.  For instance, in June I went to a college reunion.  It was great to see some good friends who I don’t see enough of.  People who had kind words to say.  People whose support really helps us to feel like we aren’t alone.  ALS wasn’t the center of our visits, but was recognized as a part of my life.  It was a balance. I am generally happy. I enjoy talking about my kids. Talking about my wife. Talking about sports. Talking about how big of idiots my buddies are.  But at the same time, I am not afraid to talk about ALS.  It doesn’t depress me if people bring it up.  It is not as if I can ever forget about it, so if someone I respect tells me my family is in their prayers, it is only a positive. If I get choked up saying I appreciate their kindness, that’s a good thing.  Those emotions are real and strong and always there and a part of my life.

The balance was in talking with people I haven’t seen in awhile that don’t know about my diagnosis.  What is the right answer to how have you been?  Life has been great.  I have two kids that spend their days smiling and laughing.  I love my wife.  I enjoy my job and where I live.  But is that really it? Is it dishonest to not bring up ALS in that 5 minute conversation?  I mean, its a pretty big part of my life.  However if I bring it up, it might mean I don’t have time to bring up my kids and their antics?  Those are big parts of my life as well. Bigger parts of my life.  I am continuing to live my life, so what is the right response?  If I want to be an advocate for the disease, do I stress the idea that I have ALS, or do I stress the idea that life goes on?   ALS is not my identity. It is a part of my story that forms my identity.

I face the same issue with my MBA class.  I am constantly bringing up Cara and the kiddos in class.  I discuss lots of parts of my life with them. At some point I want to tell them about this other part as well, but its not the easiest thing to bring up.  I am not ashamed or afraid to talk about it, its just not the lightest conversation. “Thats it for today. By the way, I have ALS. Homework due next week.  Go Gamecocks!”

But this idea of a balancing act is not unique to me.  Not unique to my family.  Everyone faces the same types of choices.  Working mothers, working fathers, professionals, college students, high school students, retirees.  Everyone faces choices. Everyone knows there is only so much they have time for.  I tell my students that time is a scarce resource, and that is what makes it valuable. Everyone is constantly trying to recalibrate their values in order to choose their optimal path.  This is just a bit more immediate for us.  Magnified.  Loud.  That part isn’t necessarily a bad thing.  Everyone hopes they are living their life to the fullest and recalibrate when something changes in their life.  I am reminded to recalibrate with every twitch, with every keystroke that takes a bit more work than the day before, the word before.  The fact that my fingers get tired is a bad thing. That twitches signal an uncertain future is too.  That they serve as a reminder that I need to fill my life with things I enjoy is not. Maybe I should bottle this part of the disease? My wife can sell anything at Wal-Mart.

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2 thoughts on “Update. September 2013.

  1. Very happy to hear you are doing well and that the disease is progressing slowly. Here’s hoping that the trials start soon and that they help. We send you all, as always, a very big hug.

  2. Stephen, your writings never fail to inspire. I hope you continue doing well and enjoy the greatest time with your family. All the best!

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