ALS: This Disease Really Stinks

Week Two

Unfortunately, this week hasn’t brought us any closer to medical guidance.  Mom is still waiting to hear from the ALS Clinic at Emory.  I called the clinic and confirmed that they do have her records, but the latest I know is that we should hear from them on Monday, February 12.  I’ve not been able to get any information on how long it takes to get a first appointment.  This is so frustrating!  I was in touch with another person in Georgia who had two months between her probably diagnosis from her neurologist and her first appointment with Emory and started treatment three days later, but I don’t know the reason for the delay.  I strongly feel we can’t wait two months to start treatment.  Those of you who know me also know that I will be…politely persistent… to ensure that mom is in there quicker.

One thing that we have learned:  there are too many kind-hearted, well-meaning, God-loving people in our sphere to mention.  Since I announced mom’s diagnosis in my first blog last week, she has heard from so many people, in some cases friends and family members that she hadn’t heard from in decades.  She has been the Belle of the Ball, and it has lifted her spirits immeasurably.  Many have called, many have visited, and even more have made plans to visit with her.  This means so much to all of us.  We have strangers letting us know that they are praying for her and the rest of us.  We feel your prayers, so please keep them coming!  We appreciate you all more than I can say.

Another thing we have learned:  some people are well-meaning, but really have no business talking to people dealing with grief.  My sister works with a woman who said to her, “The word disease has two parts: “diss” and “ease”.  Many people look for things to be “diss” “eased” about.  I wonder what your mother did to bring this disease into her life?”  Since my sister was shocked and at work, the woman did not get punched.  After I got over the shock of sis telling me of it, we spent the next half hour laughing about the things that she should have said to this moron.  For the sake of the reading audience I can’t write all of those here but use your most profane imagination. 

Here are some other goodies that we heard this week that we feel you shouldn’t utter to people who are grieving (or at least to my sister or me):

“God doesn’t give you more than you can handle.”  Oh yeah?  That’s what pharmaceuticals are for.

“It’s part of God’s plan.”  I will never, ever believe that God plans for suffering.  We will learn lessons in this journey of mom’s, but God did not give my mother this disease.

“At least you’ve had your mom this long.”  Yeah, I get it.  But that doesn’t make this pain any less.  Idiot.

“Cherish every moment you have with her.”  Well, hell, I never thought of doing THAT.  Of course, I’m going to cherish her.  But right now, at least half of what I’m grieving about is because I know her quality of life is really going to suck before she dies.  I don’t want that for her.  Frankly, I’d rather she be struck by a bolt of lightning.

“Everything happens for a reason.”  What possible reason can there be for ALS?  What possible reason can there be for parents losing their children?  What possible reason can there be for genocides?  Don’t be stupid.  Keep this one plugged up.

We know that people mean well, and as I mentioned, we’ve been overwhelmed by the graciousness and love that we have all received.  However, some statements just smacked us silly.  So, we came up with a standard phrase that we could memorize and use when that happens: “I believe you were trying to be helpful, but I think if you’ll play that back in your head, you’ll realize that it was hurtful.”  And then just walk away.  (Or as the kids say, “Drop the mike.”)

We had a fantastic family meeting with all of us:  myself and husband, sister and brother-in-law, brother and sister-in-law, and of course the parents, in which we accomplished many things.  Fortunately, there was a lot of laughing and very little crying and we made decisions on plans of care, living arrangements, powers of attorney, and legal matters.  All the grandkids were running around making too much noise and eating too much sugar, and except for the serious stuff, mom had a great time.  I am very proud of my parents and my siblings for what we were able to achieve.  Next step:  execution phase of these plans, and please Lord, TREATMENT!

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