Almost forgot! 3 years today!

Three years ago today I was diagnosed with ALS. Back then I walked with a limp. Today I am down to using slightly curled left fingers to type, and I can no longer speak clearly. I can't move the rest of my body except to turn my head.

I read of other PALS who will do anything it takes to stay alive. That's not for me, though. To each their own, but my idea of living involves no tubes and lots of physical activity. If that's not possible, I'd rather fade to black.

Watching the. Democratic Convention

I am watching the convention app, which means I don't have to listen to talking heads interrupting. Concurrently, I am dealing with a phlegm clog. A little morphine helps me relax my trachea and forget about it. And then I can revel in Michelle Obama and Elizabeth Warren. And marvel at the diversity of our convention-goers, especially in comparison to the Republican convention. We look like America. The. Beautiful.

My day starts at 8:30 with a hospice visit from Yolanda, my CNA. I am blessed to have her. She does great ROM. It almost feels like a massage. For my first and only official caregiver, I have lucked out.

Now Bernie Sanders takes the stage. Is he ever going to mention Hillary? Oh good, he did. I hope his followers act like we, Hillary supporters in 2008, did and vote for our party's candidate in November.

Tomorrow is my 56th birthday. I am fortunate to reach that milestone, definitely. So many millions don't. Still, each night I pray "my soul to take," and I mean it quite literally. God can take me anytime now. Once I lose my voice totally (today was pretty bad), and my left hand fingers give up, I have lost my methods of communication. The frustration that engenders in everyone, not least of all me, makes me want to give up the effort. So given my previous talks with my nuclear family, they are prepared at any time to say goodbye.

That doesn't mean each day doesn't have its joy. It just means I am ready to let go. I am at peace with what is happening.

Garden gifts that last

Watching Paul move the sprinkler, I thought how happy he will stay: caring for the yard and garden that was planted for me, but will give him peace in the coming years. What better way to remember me than the beauty of this backyard?

I want to be remembered, not mourned (at least, not for long!). I hope I have done enough good in my life to outweigh any bad. But I don't relish thinking any of my family or friends should grieve too long. If I don't grieve now, please know I don't want your hearts to be heavy then.

My ever-shrinking world

We used to talk about the small worlds of our aging parents, but now I can see from where the lessening interest arises. As I look toward the end, I start to think about what's really important to me. But I also retreat as my voice fades. Watching Netflix requires nothing from me. No response, inattention, sometimes sleepiness and infrequent napping. Bad interpersonal behavior, but the tv doesn't mind. And except that I think I should be outside in good weather, even though I would be a brown, withered prune (more so than I am) if I were to spend more time out in the sun when I am immobile, I could watch shows for hours, and indeed do.

So where is my world? I still read the online newspaper daily, so I try to keep up to date. I revel in re-watching Downton Abbey, and have found Jane the Virgin immensely entertaining. Even Frazier and Wings stand the test of time and still make me laugh.

And I reread old correspondence. I did read the William and Mary alumni magazine cover to cover this month, and was saddened to see one of my favorite correspondents, Chris Cragg, had died in April 2015. I had to read it several times to get it to sink in. I spent an hour trying to google her but with no luck. How can a friend be dead and I had and have no knowledge of how or why? She was just two years older than me.

Dead is dead. ALS is no more "horrific" (I hate that word!) than any other disease (or other cause) that leads to death. I am going to handle this with the help of hospice and family and friends.

No whining!!

Calendars

I have been working on my calendar for the upcoming months for events I know are going to happen, including hospice visits. I got to Christmas, and thought how last year I thought would be my last celebration of Christmas. Yet, here I am planning ahead.

 Just shows that this is not truly in my hands. I do not see myself taking my self out, anyway. So, short of a systemic failure, I am probably going to be here for a while longer. That is a good thing, all in all, although it seems like traveling is going to need to be limited due to uncomfortable beds and showers in hotels. I love my home though, so not traveling is not deprivation to me.

 So calendars are my friends. Instead of dreading the future, I look forward to each thing I get to do with family and friends. If I die in the meantime, I can die happy.

 As a well-spent day brings happy sleep, so a life well-spent brings a happy death. Leonardo Da Vinci

Sit on my headstone, please!

Paul and I have been working with his brother, Rick, the cemetery owner, to get a headstone done in Florida in time to be installed in the Anaconda cemetery when we're there in August. I figure, I want to see what everyone will see after I'm gone.

I'm reading Terkel's Will the Circle be Unbroken. One person said he wanted a bench instead of a headstone for his grave, so people can rest in a nice cemetery. Well, we just ordered a big-ass headstone. But I will tell you now, you can plop down on my headstone if it seems comfortable to do so. I just have always had a fascination with cemeteries, and headstones tell stories. But I am a hostess too, and will be that beyond death. So come visit me, and sit on my headstone if you want!

On another note (pun intended), we welcomed the Blue Pony marching band home from their triumphant participation in the National Independence Day parade in Washington, D.C.