August 2015 – Anger. Guilt. Grief.

When the moment comes and the deck is cleared of all kids and other witnesses, occasionally I will indulge in an anger rant. In my head or in my car, in the car wash, into my pillow, in the hottest possible shower. It’s that stage I guess. I read that there is no straight line order to the stages of grief – we go back and forth through them all and hope the productive stages take us further than the unproductive stages in the end.

But oh… Neil got ripped off! It is unreal to me that a man of such vibrancy, intellect, humor and courage is gone. He will not see his children become teenagers, not their college years nor careers nor marriages nor children. They will be forever frozen in his eyes as a precocious, handsome 11-year old boy and strong-willed and funny 13-year old girl. He will not see the reactions to the sealed letters he wrote to them each birthday since they were little, or to the gifts he bought them for their 18th birthdays. He will not see the citizens they will become.

And though I am fully and humbly aware there are people out there with a MUCH harder journey than mine, occasionally I sing the “I Got Ripped Off Blues” too. Of course I’ve had four years to adjust to the notion that Neil and I would not grow old together, not see our grandchildren together… and when my serious illnesses come my husband will not be there to care for me. But I did not expect to be without him so early. I know that sounds stupid. ALS is 100% fatal for heaven’s sake. But if anyone was going the distance it was going to be Neil. I want more time.

So I am left with moments during the day, during the night, just normal life where I wish I had his hand to hold or his ear to talk off. And I’m left with the parenting choices – the little ones and the big ones, where I only have my memory of him to lean on when I need his guidance. And those moments when I close my eyes and I see his suffering and the sadness that he showed very rarely and mostly just to me. It breaks my heart. I would take him back in any form, no matter the work, sleeplessness, backache, grief or confusion of living with disease. I see friends who are caregivers for their severely disabled spouses and pangs of envy sweep over me. I want him back. I miss my friend so much.

Worse than any of that, though, is the constant knowledge that I get to watch Neil’s children grow up and he does not. I get to be present for their wins and their fails. I get to walk the path that he cut for us through the weeds/meadows that he knew were ahead for us. This is the guilt talking and a late night anger rant that may or may not end up on a blog. I will just stop here because I’m sure any parent would understand: this is very hard.
Most hours of the day I am busy being a mom and inspired and grateful for the life in front of me and for all the blessings we have enjoyed and all the good I get to do. But I think it’s fair to share that there are some really messy parts to this too. Anger. Guilt. Grief. I can point to five Giants who were friends cut down by ALS in the short time since Neil left us. Five amazing humans who just a few years ago were also told, “You have ALS. Do what you love. Because you only have a couple of years left and every moment between now and then will be polluted with the thought of your early horrifying death and all your losses.” It is unimaginable. It makes me so mad.

I need a villain and I can only point to this stupid thief ALS. You can see it here in Neil’s death certificate. I took a picture of it when I received it back in March, thinking one day I would need a “visual” for the anger I would feel. That was smart. I am determined to wring some good out of this. Thank you for indulging me and for forgiving me for a little anger and for joining us as we move onward. Of course lots of people are taking up this cause in a meaningful way – ice buckets will be flung around in the weeks ahead to remind us all that ALS is a worthy cause. So glad to be in their company. It’s too late for my family – Neil is gone. But maybe the silver lining is we can do something for the next guy. That was Neil’s dream. One of them anyway. That we would move the needle on research to find a cure, and that Abby and Patrick would be in a position to bring relief and support to ALS families for years to come through our fund.

Here’s a link to events coming up for LiveLikeLou. And here’s a link to the new $10million LiveLikeLou Center for ALS Research at The University of Pittsburgh’s Brain Institute.

Thanks for being mad with me too – and for helping to do something about it.

With love and gratitude and a late night head full of steam – Suzanne