Life and Love with ALS

Today I went to work. Budgets happened, meetings happened, aggravations happened, lunch happened. Today we woke up. We had breakfast. We fed dogs. We talked to cats. We remembered getting our Tori six years ago today, our first dog. Today we remembered what thinking about having maybe twenty years ahead together looked like. Mostly though,  we appreciated having this day . A phone call from work to say I was on my way home. A simple dinner. Watching convention speeches. A Grand Marnier on the couch. Today is what we have. Today is beautiful.

There is an absolutely beautiful, if haunting set of photos out there from a professional photographer who's wife died of breast cancer at age 40. They had been married just months when she was diagnosed. He also started a wonderful foundation "The Love You Share" to financially assist women and families dealing with breast cancer. He calls his site "The Battle We Didn't Choose". Indeed they did not choose it and the long fighting of it was no doubt beyond heartbreaking. The photos and story can be seen at www.mywifesfightwithbreastcancer.com. ALS presents a somewhat different situation - it is the Battle We Cannot Fight. As of this writing, there is one drug available, Rilutek, to potentially forestall the progression of ALS, maybe by up to six months, in a lucky few. Many people not on medicare or VA insurance skip it altogether because of large co-pays. This meager drug retails for 14K annually, and it's efficacy is disputed still. Brian takes it b...

While we were in the diagnostic process, I posted something from the Rolling Stones "Time Waits for No One" on my Facebook. It was : Drink in your summers/Gather your Corn/The dreams of the nighttime vanish by dawn. It's not sad or negative, it's a call to live! It's amazing how much time we can spend worrying, procrastinating, self-denying, you name it. None of us have that kind of time! Go live! These past few weeks have been so freeing in an unexpected way. We "got a stopwatch" (we always had one,  it's just closer now) and right now we ask what it is we want to do, to experience, to be in any given moment. Not what others expect. Not what we "should" do. I am not saying abandon all sense of responsibility, but dammit if your life lacks joy, your life lacks and you need to find that joy. We are, we will keep doing so in every day that we have.

It has been two weeks since we got the official news. It's up and down. Realizing it's our dog Tori's birthday, being so sad realizing Tori may outlive Brian... Having a nice dinner and planning our houseboat reservation that same night - felt a lot better. Going to my mom's and seeing an art book she got at the hotel at our wedding - sad again... Talking about our trip up North in September, so nice.... So it goes, back and forth. Sadness, a tough of denial, grief and then better, good, okay we can handle this and then just seeing another woman's wedding ring and being a little envious her husband is okay. The hardest moments are thinking too far into the future, the best are in the now. I feel myself being quieter. I feel myself more comfortable at work than with friends, except when I am with Brian. Yet I fear my friends "poofing" on me, being too uncomfortable to hang with us anymore. Some of that is bound to happen, I get that and I don...

So last night we went out late, had drinks and dinner on the patio and just enjoyed a beautiful night. We love each other to bits, it's summer and yes we are enjoying. Today we are going on a cruise from 4-6 and having fajitas and drinks. It cost too much and we don't care.  We don't care if it's raining either. The big inside area of the boat means the cruise sails rain or shine. I love boats, always have. Speaking of not caring, I have a short list of a few things I decided I will not care about any longer: 1. Complaining about work nonsense. It's not important. 2. Health anxiety. You are either okay or not okay. If you think you are not okay, go to a Doctor and fix it or work with it. 3. Getting older. It's a beautiful thing and something not granted to everyone. We are off to have a good day.

I truly do not want this blog to be all and only about ALS. That is not my intention at all. We are nothing if not life-affirming people, and living our life together is our focus now. We do live that life with ALS. In my heart I feel like "we" were diagnosed, which I realize is a little dramatic. I am not the one looking at a 2-4 year average life expectancy, I am not the one losing strength in my body. Yet, at the same time like all serious illness the family, not just the patient lives with the condition. So I begin with this thing we live with, and how we got there. It's very long, and may be more technical in parts than is interesting to many but its part of our story. In February, Brian had a fall on some steps. In the middle of the night at a hospital with his nephew, he was carrying a lot of stuff and tripped and fell. In typical Brian fashion, he downplayed the accident but he did begin to say  that his knee hurt. As weeks went on, he would say his walk felt d...

I will tell our whole diagnosis story here, and then I will also tell our story, our history here in due time because that is more important than ALS could ever be. A lot of people have written on their experience with ALS recently. I can't hope to add much to that body of work, but I decided after some thought to begin a blog both to keep interested friends posted on our latest doings in the midst of this big scary diagnosis, and also as an outlet for myself. I also do not intend to write only about our lives in relationship to ALS here - life is still and must be so much more than what has happened to us.