Stayin’ Alive

My Catholic upbringing has me feeling guilty.  To paraphrase, “forgive me readers, for I have sinned.  It’s been 10 months since my last post.” But you’re all friends who I’m sure will forgive me.  Thank you.

Expecting the best

A friend posted, “I’ve learned that if you don’t have expectations of people, they can’t disappoint you.”

I guess there are two ways to take that.

I’ve found that the best way to avoid being disappointed by people is to believe the best about them.  First, no one can make you disappointed. They might do something disappointing, but you always have the choice of what to focus on, what meaning to give it, and what to say and do about it (see Tony Robbins and Joyce Meyer). Second, it’s not about you. By this I mean, almost always the way people act is not malicious or careless of you, it is much more driven by what they are experiencing in that moment.  I encourage you to consider how you would like others to think about you. Do you want them to expect the best from you and understand if you disappoint them? Or would you rather people say, “she probably won’t keep her commitment.”

This is especially important when you’re on the receiving end of care.  The mornings when I wake up dreading the day and imagining what someone might do that disappoints me, I end up finding fault with caregivers and being so grouchy that we’re both miserable. Thankfully, longtime aides must be expecting better from me and know how to gently tease me into a good mood.

Song of the week:  Beautiful by Carole King

When A Party Isn’t Fun

Parties don’t do much for me.  Other than a few minutes  with a good friend who knows how to communicate with me and some good music. 

So much about ALS isn’t just losing motor function, it also creates more and more isolation.  Physically, no one gives me affection (hugs, holding hands, etc) and I can’t reach out to initiate it.  I get two proper hugs a week when my sister really holds me close for a minute or two when she says hello and goodbye. Verbally, strangers assume I’m mentally incapable and even loved ones often don’t wait for me to respond for it to be a true conversation. 

Breaking the News

There is an old (kind of lame) joke:  A guy was going to be away for awhile and asked his friend to watch his house and take care of his cat.  He called to find out how things were going and his friend said the cat died. The guy yelled, “You don’t just tell bad news like that!  You ease into it, like say the cat is on the roof. Then next time I call you say it doesn’t look good, etc.” A few days later the guy calls back and asks what’s new and the friend says, “Your grandma is on the roof.”

I made some big mistakes during and right after the diagnosis process.  First, only my sweetheart knew everything going on. And my direct supervisor knew something was wrong and I was getting testing.  I had to tell her something because she noticed the slight changes. Aside from being a supervisor responsible for my job performance, she was also a friend worried about me.  Still, out of concern for my job, I was as vague as possible. All that was fine, but I didn’t even hint to family and other friends what symptoms or tests I was having.  I don’t know why not; avoidance? Denial disguised as hoping for the best?

Positive Mental Attitude (PMA)

You can also easily access this post in Reference.

I first saw this coined as a term and identified as a vital part of ALS treatment by Eric Edney.  Since he lived 22 years with ALS, and this is no-cost, I see no reason not to include it in my regimen.  Over the years I have seen other people – from pALS to scientists – who advocate this concept. Although traditional doctors don’t talk about it, and might even scoff, there is growing scientific evidence supporting the mind-body connection in healing.  Whether you are naturally positive, or you aren’t but are willing to try it, here are ideas to get you started.

Be the CEO of Your Care

Setting the tone and vision of how you live with a disability to inspire excellence and be an active partner with caregivers rather than a “patient”.  [From a presentation for an ALS support group in February 2015. Reading this four years later, it sounds a bit ‘preachy’ although that’s the nature of a lecture.  It also feels a bit hypocritical because at the moment I’m facing a couple challenges and don’t feel very CEO-ish. But here it is, and know that I am preaching to myself to get back on track.]

The inspiration for this presentation was a woman with ALS who told me, “I’m a bad patient.” It was heartbreaking to hear about her increasing unhappiness over the months. I don’t think it had to be that way.  This is the advice I would have given her and her family if I had had the opportunity.

To me, the term “patient” implies passively letting others do what they think is best for you. I prefer to think of myself as a CEO and partner. Chief Executive Officers have a vision of what their company will accomplish, and how they will operate, and then they get everyone in the company to work towards that ideal. So the first thing is to remind yourself that you are a person not a patient. I will call the woman I met Mary. When Mary referred to herself as a patient, it seemed like she felt she had little control. It’s true that ALS takes our muscle strength and control, but we can still choose how to think and act.

Symptoms and Diagnosis

I was diagnosed with ALS on January 30, 2009.  A lot of people with ALS have their exact diagnosis date imprinted in memory.  It was a Friday afternoon, and I’ve wondered since then if the doctor scheduled it that way purposely; the news was such a shock that I can’t imagine going back to work as if it was just carpal tunnel syndrome.  

Is This My Punchline?

I watched a TED talk with a very common message, but framed from such a different angle that I couldn’t stop turning it this and that way in my mind.  Like I said, it’s a common motivational speech topic – the importance of finding your calling. Michael Jr, who delivered the talk, is a comedian so he naturally uses the analogy of life being like the setup and punchline of a joke.  He does a masterful job getting his point across, but I kept getting hung up on the concept of a punchline.