Well, it seems that I should have introduced the term "klutz" or "accident prone" to the title as I have yet again managed to cripple myself.
Evil recliner.
Innocent pointer finger.
Not pretty.
Black/blue left pointer, revoltingly cracked fingernail.
So once again, it's slow going.
Plus, I went up to my brother's house to help my mom with her anniversary gift to my bro and his wife. We planted colorful flowers in pots on the patio. Perfect gift, really, adding beautiful vibrant plants on a gray, cold, winter day.
I find it absolutely devastating seeing him like this.
I want to be stronger, more self-less, more loving. I know I will regret it, not seeing him as much as possible now, and I know it must hurt him that I don't go more often.
That's truly the hardest part, I think.
Knowingly hurting someone you love because of your own need to self-protect.
I find that I am in a hundred different pieces when I get home and it seems to last such a long time. It definitely varies from visit to visit, but it is crushing having a family member with a terminal illness.
I wonder why I can't be like all these lovely people who come and sit with him, care for him, massage his atrophied body, who sit and look him in the face as he works to spell out with eye movement and exhales that are becoming more and more difficult whatever single word will surmise the brilliance he has to offer.
I suppose because they might have the present and a bit of the past, but they don’t have the origins, they don’t have the history.
I still flash on Paul teaching me gymnastics, listening to music with me, sitting at Swenson’s Ice Cream with him and feeling girls looking at me with envy that I was with this older, handsome boy, who drove…and played along. He opened the car door for me and winked at the girls, and I thought he was the coolest.
I remember his singing Christmas Carols and being wickedly funny.
I remember always wanting to beat him across the pool swimming freestyle, and never doing it.
I only jumped off the fifty meter high dive when I was eleven because he said I could do it.
I remember coming back from my dad’s funeral and Paul walking ahead of me humming a Michael Jackson/Paul McCartney song “the girl is mine” but belting out “I don’t believe it!” loudly and somewhat lyrically.
I remember his sitting next to me when I signed my divorce papers, crying and his patting my shoulder, understanding the conflicted emotions I was feeling.
I remember the looks he gave me - of pride, of love, of peace and favor - in the Dominican Republic when we went on a mission trip together.
I have so many bits and pieces that all come flooding out of my locked memory and they consume me for days after visiting him.
I feel like I will spontaneously combust with grief and rage and disbelief. What must it be like in there? I cannot even begin to fathom every single second of every single day trapped inside a frozen body - with a colorful, opulent mind waiting to be released. My own breathing betraying me.
I cannot imagine that sort of bravery.
That sort of faith.
I don't have a tenth of it.
ALS sucks.
Evil recliner.
Innocent pointer finger.
Not pretty.
Black/blue left pointer, revoltingly cracked fingernail.
So once again, it's slow going.
Plus, I went up to my brother's house to help my mom with her anniversary gift to my bro and his wife. We planted colorful flowers in pots on the patio. Perfect gift, really, adding beautiful vibrant plants on a gray, cold, winter day.
I find it absolutely devastating seeing him like this.
I want to be stronger, more self-less, more loving. I know I will regret it, not seeing him as much as possible now, and I know it must hurt him that I don't go more often.
That's truly the hardest part, I think.
Knowingly hurting someone you love because of your own need to self-protect.
I find that I am in a hundred different pieces when I get home and it seems to last such a long time. It definitely varies from visit to visit, but it is crushing having a family member with a terminal illness.
I wonder why I can't be like all these lovely people who come and sit with him, care for him, massage his atrophied body, who sit and look him in the face as he works to spell out with eye movement and exhales that are becoming more and more difficult whatever single word will surmise the brilliance he has to offer.
I suppose because they might have the present and a bit of the past, but they don’t have the origins, they don’t have the history.
I still flash on Paul teaching me gymnastics, listening to music with me, sitting at Swenson’s Ice Cream with him and feeling girls looking at me with envy that I was with this older, handsome boy, who drove…and played along. He opened the car door for me and winked at the girls, and I thought he was the coolest.
I remember his singing Christmas Carols and being wickedly funny.
I remember always wanting to beat him across the pool swimming freestyle, and never doing it.
I only jumped off the fifty meter high dive when I was eleven because he said I could do it.
I remember coming back from my dad’s funeral and Paul walking ahead of me humming a Michael Jackson/Paul McCartney song “the girl is mine” but belting out “I don’t believe it!” loudly and somewhat lyrically.
I remember his sitting next to me when I signed my divorce papers, crying and his patting my shoulder, understanding the conflicted emotions I was feeling.
I remember the looks he gave me - of pride, of love, of peace and favor - in the Dominican Republic when we went on a mission trip together.
I have so many bits and pieces that all come flooding out of my locked memory and they consume me for days after visiting him.
I feel like I will spontaneously combust with grief and rage and disbelief. What must it be like in there? I cannot even begin to fathom every single second of every single day trapped inside a frozen body - with a colorful, opulent mind waiting to be released. My own breathing betraying me.
I cannot imagine that sort of bravery.
That sort of faith.
I don't have a tenth of it.
ALS sucks.
Comments
I think you should share this post with him. He'd understand.
You don't need to be brave. You just have to love him.
Prayers going up for both of you.