Here's something for you-
I'm not as strong as I appear on Facebook.
Most days I push, and push, and push. I never allow myself to be sick, or tired and I never blame anything on my MS. I wear the MS t-shirts. Ra ra ra, let's cure it, push harder, we're MS champions, Facebook memes and run the races, MS Fitness Challenge and...oh my word just announcing you have a disease is exhausting.
I want to go to bed. I want to be selfish.
Every morning I take a drug called Nuvigil. It's for people who have chronic fatigue. That's me. I fall asleep working, driving, talking, going to the bathroom... It's embarrassing. I'm embarrassed by it. I bring my coloring books over to friend's houses so I'm stimulated enough to carry on conversation.
But I'll be honest with you. Some days? I just don't want to take it. Some days, I just want to lay down and take the nap that my body is asking me for. I ask my husband, "I wonder how long I'd actually sleep if I'd sleep as long as my body wants me to sleep." (How much wood would a woodchuck chuck...)
Some days, I just want to be sick. Some days, I want to call in and say "I can't today. I have MS. I'm also having my period now, so it's about double in intensity. I'm slurring sentences and forgetting words. I'm not wearing my sneakers because I took them off and forgot where I put them. 10 minutes after taking them off. I drop footed twice today, and it makes me feel unsteady, so I'd rather lay in bed. Is that okay?"
When you are first diagnosed with a disease, everyone jumps on your disease bus. I may have said this before, but it's true. There are meals delivered. People offer to take you to appointments and babysit your kid and clean your house and... and then it stops. Just like a new baby. Three years into it, and people have already forgotten. It becomes part of the scenery of your life.
I've been asked to participate in wedding planning for a relative who is getting married in the Spring. She has a long laundry list of things I'm supposed to do. I told her honestly, I cannot do all that. She informed me it wasn't that much. I wanted to remind her- I have MS. Getting up and coming to your wedding and arriving with my family looking presentable is "that much." But I don't say it.
I went to the grocery store with our son. He was being three. He was excited to be at the grocery store. He was upsetting me. I broke down. "Liam, the grocery store makes mommy's MS get VERY BAD. So I NEED YOU TO LISTEN TO ME NOW." People turned and looked and then walked on. (She doesn't LOOK sick...)
We are plugged with all the hoopla of "Own the disease! Don't let it own you!" Yeah, shut up. Today I don't mind the title.
If you need me, I'll be asleep on the potty.
Thursday, January 14, 2016
Monday, November 30, 2015
Ice Skating
I've never NOT known how to ice skate. Does that make sense?
When I was a young one, living out in the country, there were ALWAYS, and I do mean always, a pair of roller blades strapped to my feet. I heard it a thousand times- "Libbie, take your roller blades OFF before entering the house!" Yes, mother.
Our house had a fairly steep driveway in an "L" shape. It took me all summer, but one year I decided, I was going to skate the driveway. I'd start at the top, and little by little I'd go down the driveway on my 'blades until I was confident enough to ride the entire thing. When I was confident enough with the incline and the sharp bend in the driveway that I could execute it without falling, I went faster and faster. No fear.
Last night Andy was feeling sick and so I took Liam ice skating. Liam was beyond excited. When we got there, the older boys were playing hockey and he just stared at them. And then was scared when the buzzer went off. And then stared at them. He was enthralled. He had never seen anything like that before in his tiny life. So of course, he decided he was going to be awesome at it.
We got his skates. Size 11- too small. Size 12- perfect. I laced them as tight as I could. Popped a helmet on his head. Slipped some hockey gloves on his hands. He was ready.
Then he got on the ice and he wasn't so ready. "I'm falling! I'm not good at this! I want to go home!" I bent my body over his and held on to him under his arms from behind. "You've never done this before," I whispered. "You'll be good at it in a bit." After a few laps, I was sweaty and he was more confident. Not great, but more confident.
We rest at his request. "Let's do it again, mommy."
This time my sister grabbed him under the arms and together we held him up. Another lap. Another rest. "Come on mommy, let's do it again."
This time I held one of his hands and he held the wall. "Hold me up, mommy. I'm going to fall." You won't fall if you listen to my instructions, Liam. Keep going. Keep skating. Left foot. Right foot. Glide, baby, glide. There you go! You're doing it!
Rest. "Okay mommy, I'm ready. Let's do it!"
My friend took one of his hands, I took the other. Clip clop clip, glide, clip, clop, glide, stumble, glide. But we made it the full way around the rink. "Again, mommy, again."
Again we went around. "I can't" became "Look at me mommy!" He wasn't ready to let go of my hand, but he was ready to go around again and again. We got off the ice and took our skates off. He cried. We loaded into the car. He cried. "Mommy, I am sad you are taking me home. Can we come tomorrow?"
I got home exhausted. I foam rolled like mad so I wasn't sore the next day. (I was fine, actually. Hooray for the MS Fitness Challenge!) And I just sat back and enjoyed the memory I had just made with my little boy. It wasn't natural for him, but he wanted to learn. He was inspired and he felt safe enough with me to fail...and then try again. Like, isn't that what we're supposed to teach our kids? You can fall, but I'm here to catch you. You're not great at this yet, but let's learn together. I'll teach you.
I was looking at all the guys at the rink. Big buff dudes, skating fast and spraying ice. Ugh, thugs. Boy in the very center of the rink- ear buds in- spotted him wheeling in his own suitcase for his skates- spinning circles with his eyes closed- amazing. Eh, too complicated. Too much money invested. Spied some jocks along the wall. Too good for everyone. Girls swooning. Gag. No. Then along skated the most understated boy on the ice. Short and small in stature. Skating well enough to hold his own. Hand in the hand of the most adorable teenage girl- long braids, slouchy hat, smiles from ear to ear. Immediately I loved them.
"See that little girl and boy? That's why you need to learn to ice skate, dude."
Liam teaches me on a regular basis. He schools me on not giving up and pressing on and determination in all things. And then I'm like- wait. He's learning that from...me. I'm teaching him you're good enough and you're strong enough. And you need to not give up, no matter the adversity. He sees me getting up for the gym every day. He sees me slopping through the mud to get to the finish line. He's channeling that little girl who taught herself to roller blade down the driveway.
I worry that I won't be there for him when he's older. I worry that I'll be in a wheelchair before then. That I'll be sitting on the sidelines instead of running sprints with him. I worry that I'll be too tired to get up to take him to practice. I worry about all that stuff. But I shouldn't. Because he's learning all this stuff today- right now- at 3 years old. Do I care if he never learns to skate? Nah. But I'll take that determination in his little eyes all day long.
When I was a young one, living out in the country, there were ALWAYS, and I do mean always, a pair of roller blades strapped to my feet. I heard it a thousand times- "Libbie, take your roller blades OFF before entering the house!" Yes, mother.
Our house had a fairly steep driveway in an "L" shape. It took me all summer, but one year I decided, I was going to skate the driveway. I'd start at the top, and little by little I'd go down the driveway on my 'blades until I was confident enough to ride the entire thing. When I was confident enough with the incline and the sharp bend in the driveway that I could execute it without falling, I went faster and faster. No fear.
Last night Andy was feeling sick and so I took Liam ice skating. Liam was beyond excited. When we got there, the older boys were playing hockey and he just stared at them. And then was scared when the buzzer went off. And then stared at them. He was enthralled. He had never seen anything like that before in his tiny life. So of course, he decided he was going to be awesome at it.
We got his skates. Size 11- too small. Size 12- perfect. I laced them as tight as I could. Popped a helmet on his head. Slipped some hockey gloves on his hands. He was ready.
Then he got on the ice and he wasn't so ready. "I'm falling! I'm not good at this! I want to go home!" I bent my body over his and held on to him under his arms from behind. "You've never done this before," I whispered. "You'll be good at it in a bit." After a few laps, I was sweaty and he was more confident. Not great, but more confident.
We rest at his request. "Let's do it again, mommy."
This time my sister grabbed him under the arms and together we held him up. Another lap. Another rest. "Come on mommy, let's do it again."
This time I held one of his hands and he held the wall. "Hold me up, mommy. I'm going to fall." You won't fall if you listen to my instructions, Liam. Keep going. Keep skating. Left foot. Right foot. Glide, baby, glide. There you go! You're doing it!
Rest. "Okay mommy, I'm ready. Let's do it!"
My friend took one of his hands, I took the other. Clip clop clip, glide, clip, clop, glide, stumble, glide. But we made it the full way around the rink. "Again, mommy, again."
Again we went around. "I can't" became "Look at me mommy!" He wasn't ready to let go of my hand, but he was ready to go around again and again. We got off the ice and took our skates off. He cried. We loaded into the car. He cried. "Mommy, I am sad you are taking me home. Can we come tomorrow?"
I got home exhausted. I foam rolled like mad so I wasn't sore the next day. (I was fine, actually. Hooray for the MS Fitness Challenge!) And I just sat back and enjoyed the memory I had just made with my little boy. It wasn't natural for him, but he wanted to learn. He was inspired and he felt safe enough with me to fail...and then try again. Like, isn't that what we're supposed to teach our kids? You can fall, but I'm here to catch you. You're not great at this yet, but let's learn together. I'll teach you.
I was looking at all the guys at the rink. Big buff dudes, skating fast and spraying ice. Ugh, thugs. Boy in the very center of the rink- ear buds in- spotted him wheeling in his own suitcase for his skates- spinning circles with his eyes closed- amazing. Eh, too complicated. Too much money invested. Spied some jocks along the wall. Too good for everyone. Girls swooning. Gag. No. Then along skated the most understated boy on the ice. Short and small in stature. Skating well enough to hold his own. Hand in the hand of the most adorable teenage girl- long braids, slouchy hat, smiles from ear to ear. Immediately I loved them.
"See that little girl and boy? That's why you need to learn to ice skate, dude."
Liam teaches me on a regular basis. He schools me on not giving up and pressing on and determination in all things. And then I'm like- wait. He's learning that from...me. I'm teaching him you're good enough and you're strong enough. And you need to not give up, no matter the adversity. He sees me getting up for the gym every day. He sees me slopping through the mud to get to the finish line. He's channeling that little girl who taught herself to roller blade down the driveway.
I worry that I won't be there for him when he's older. I worry that I'll be in a wheelchair before then. That I'll be sitting on the sidelines instead of running sprints with him. I worry that I'll be too tired to get up to take him to practice. I worry about all that stuff. But I shouldn't. Because he's learning all this stuff today- right now- at 3 years old. Do I care if he never learns to skate? Nah. But I'll take that determination in his little eyes all day long.
Tuesday, November 10, 2015
Introvert
There are many, many words people may use to describe me. I'm not going to list them. But ask someone who knows me to describe me and make your own list.
Introvert? Not even close to being on that list. Not even the long list. I enjoy going out with people. I get excited about visiting places. I enjoy meeting new friends. I'm not "shy" and I'm definitely not "quiet." Except for those times my MS is owning me. Which it has been.
The scene is my BIL's apartment in Providence. He shares it with his room mate, a gay man who is in love with a woman. The apartment is perfectly decorated in a kitschy Art Deco- everything is there for a purpose. Everything in the home has meaning. The fire is roaring. The bar area is lit in a romantic glow. No actual overhead lights in the home except the kitchen, which is a flurry of activity as my BIL cooks his little heart out. The music is about two decibels too loud, but over the laughing and the merriment, it's...still two decibels too loud. The windows are open, because the fire is so intense for the tiny space that it becomes a distraction. My son is taking this all in. He's starving. It's almost 8 and we haven't eaten. I'm busy feeding him cashews from the bar because there's no kid food in sight. He sits there like a little man, drinking juice from a tiny glass out of a tiny straw. He doesn't mind any of this, of course. It's all new and fun and loud. To him, it's an adventure.
Room mate's love interest comes. She doesn't just enter the room, she comes in and takes it over with her mere presence. Everyone cheers her name. I see her fancy shoes and immediately know she's out of my league. She says things like "oh honey" and "be a doll and" and "aren't you scrumptious." She's a Gusher. My head is on fire. She sits next to me. Liam is done with supper. He hasn't eaten anything. He doesn't like it. I'm starving and there's salad. I ate four helpings of salad.
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What people don't know is that my day up until that point was a living nightmare. My MS is flaring in ways it never has before. I'm recovering from my grandmother's passing and crying. Every. Day. The night before, Liam was up coughing all night so I slept sitting up with him in my arms. The next morning my husband and his brother head off for the Comic Con and manage to wake Liam up at 8am with them. He wakes up running and never stops. It's 1:30 and we haven't eaten yet. He's starving. He throws FOUR TANTRUMS in public. I spank him three separate times after MANY failed attempts at quieting him. I buckle him in. He unbuckles himself. People most likely think I'm abducting him. He stiffens himself out like a board. Screaming. My MIL intercedes by grabbing his arm. I shoot her a look that she seems to understand. Let. Me. Parent. He doesn't want food. He doesn't want anything. He's exhausted. I take him home for a nap. He's not sleepy. He jumps up and runs away. I catch him. He turns the light on. I turn it off. He turns it on. I say no. He says "I'm the boss." I say no. I grab him and hold him against his will while he's screaming and kicking me. "You're MEAN! MEAN MOMMY! LET ME GO!" No. You will sleep. You need to take a deep breath. He doesn't want to breathe. HE wants to be angry. I cuddle him up and rock him to sleep. The car he's been clenching in his tight little fist all afternoon falls from his hands and he's out. I sit there and watch him sleep. He's beautiful. He sleeps for 1.5 hours and I watch him. He wakes up screaming. Nightmare. He doesn't know where he is. Screaming. No consolation. Screaming. Here! Have the Kindle! Anything. Please, calm down. Time for a shower. He doesn't want to take a bath. He runs to the bathroom. Screaming. Screaming. Screaming. I know my inlaws can hear it all through the floor. No bath. Yes bath. I take his clothing off of him. Screaming. He throws himself around. Fourth spanking of the day. We do not act like that. You will get in the shower. You need to breathe. "I not want to breathe." And so we're in the shower together, because I have no other way at this point, and he asks to be held. He breathes deep with his hands on his belly. "I love you mommy." I love you Liam.
----------------------------------------
When you have MS, social situations can seem like you're tripping on LSD or something. Like you're listening to Pink Floyd while watching Wizard of Oz. So I've got about 20 things going on in the room. Candles everywhere. Fire roaring. Son not wanting to eat. Music. Food. Eccentric guests. Loud voices...Music. 10 people at a table for 4...Son wanting to play. Where are the toys I brought...so hungry...darling where'd you get that dress...music...mommy I'm hungry I don't like this........can you pass me the........if it's not too much trouble............shrieking laughter..........clapping.......music music music....honey don't touch that.......bite of food......breeze from the window........take a bite of the music.......candles....don't touch that.....tell me a little about yourself.................................................how are you.......what do you like to candles......music.......breeze.......don't touch that...........so you work in.............oh Libbie can do that................Liam you need to eat......................at last my life is like a song......................please don't touch that................................................................everyone talking at once...................andy he had a terrible day I couldn't eve............oh your grandmother just died........................I'm sorry.............hug me........................mommy....................................................music.............................................fire..................................................................this...............is................not...................fun.....................
and then they wonder why we don't like going out in social situations.
The Gusher asks me where I got my dress. "Ann Taylor. Clearance. Gift card."
The Gusher asks me where I get my son's clothing. "Consignment."
The Gusher asks me how I like my short hair. I touch my hair. I hadn't styled it. "I like it."
The Gusher asks me if we're having more children. "Maybe? Not now."
The Gusher asks if it was a medical concern. "I have MS."
Silence.
And here it is. The huge elephant in the room. Gusher of course gushes. Tells me I'm beautiful. Asks if it's terminal... terminal...really? Grabs Andy's hands and tells him she's SO SORRY. This must be SO SAD for him. Then she calls her Uber car. She drinks another glass of wine. Someone spills her glass of wine. The party stops so they can clean it up. The moment is over. I take my glasses off, hoping they're adding to the insanity and lack of clarity of it all. It doesn't help. Gusher's arm movements are too big for the tiny apartment. She leaves. I think I like her...I think she'd like me if I wasn't flaring so badly. If I hadn't spanked my child 4 times that day. If I had not spoken of myself and turned the conversation back to her. If I was on my A game.
"I know all about MS." Room mate exclaimed in a wine-drunk kind of way. "The mylar is being eaten by your immune system and you have to take shots and shit. Interceron and all that." Yes. Mylar. Like a balloon. Shots and shit. Exactly. Interceron. You're an expert. Clearly. "My MS has made me what I am," I said clearly, "I own it. It's mine. It changed my life. It changed our marriage. Andy and I fight it together." "WHY would you celebrate that?" He slurred. "You have faith in GOD, so why not just celebrate that by His stripes you are healed?" I stared at Andy. Gusher threatened to call for an Uber again. Room mate assured her he was fine to drive. Liam asked to pee. Pee. Uber. MS. mylar. interceron. faith. the music is so loud. We need to go.
I didn't say goodbye to anyone. The stairs in the place are ridiculously treacherous. I told Liam to go down on his butt and not stand up no matter what until he got to the bottom. I held on to the walls as I inched my way down, mentally calculating how to fall the most agile way, so as not to create ruckus, should I fall. I didn't fall. I breathed in the fresh air. Over.
"I wish I was the woman you married." I whispered to Andy in the car. "I wish this wasn't me." He held my hand. "I know." He said. "I know."
Introvert? Not even close to being on that list. Not even the long list. I enjoy going out with people. I get excited about visiting places. I enjoy meeting new friends. I'm not "shy" and I'm definitely not "quiet." Except for those times my MS is owning me. Which it has been.
The scene is my BIL's apartment in Providence. He shares it with his room mate, a gay man who is in love with a woman. The apartment is perfectly decorated in a kitschy Art Deco- everything is there for a purpose. Everything in the home has meaning. The fire is roaring. The bar area is lit in a romantic glow. No actual overhead lights in the home except the kitchen, which is a flurry of activity as my BIL cooks his little heart out. The music is about two decibels too loud, but over the laughing and the merriment, it's...still two decibels too loud. The windows are open, because the fire is so intense for the tiny space that it becomes a distraction. My son is taking this all in. He's starving. It's almost 8 and we haven't eaten. I'm busy feeding him cashews from the bar because there's no kid food in sight. He sits there like a little man, drinking juice from a tiny glass out of a tiny straw. He doesn't mind any of this, of course. It's all new and fun and loud. To him, it's an adventure.
Room mate's love interest comes. She doesn't just enter the room, she comes in and takes it over with her mere presence. Everyone cheers her name. I see her fancy shoes and immediately know she's out of my league. She says things like "oh honey" and "be a doll and" and "aren't you scrumptious." She's a Gusher. My head is on fire. She sits next to me. Liam is done with supper. He hasn't eaten anything. He doesn't like it. I'm starving and there's salad. I ate four helpings of salad.
-------------------------------------------------------
What people don't know is that my day up until that point was a living nightmare. My MS is flaring in ways it never has before. I'm recovering from my grandmother's passing and crying. Every. Day. The night before, Liam was up coughing all night so I slept sitting up with him in my arms. The next morning my husband and his brother head off for the Comic Con and manage to wake Liam up at 8am with them. He wakes up running and never stops. It's 1:30 and we haven't eaten yet. He's starving. He throws FOUR TANTRUMS in public. I spank him three separate times after MANY failed attempts at quieting him. I buckle him in. He unbuckles himself. People most likely think I'm abducting him. He stiffens himself out like a board. Screaming. My MIL intercedes by grabbing his arm. I shoot her a look that she seems to understand. Let. Me. Parent. He doesn't want food. He doesn't want anything. He's exhausted. I take him home for a nap. He's not sleepy. He jumps up and runs away. I catch him. He turns the light on. I turn it off. He turns it on. I say no. He says "I'm the boss." I say no. I grab him and hold him against his will while he's screaming and kicking me. "You're MEAN! MEAN MOMMY! LET ME GO!" No. You will sleep. You need to take a deep breath. He doesn't want to breathe. HE wants to be angry. I cuddle him up and rock him to sleep. The car he's been clenching in his tight little fist all afternoon falls from his hands and he's out. I sit there and watch him sleep. He's beautiful. He sleeps for 1.5 hours and I watch him. He wakes up screaming. Nightmare. He doesn't know where he is. Screaming. No consolation. Screaming. Here! Have the Kindle! Anything. Please, calm down. Time for a shower. He doesn't want to take a bath. He runs to the bathroom. Screaming. Screaming. Screaming. I know my inlaws can hear it all through the floor. No bath. Yes bath. I take his clothing off of him. Screaming. He throws himself around. Fourth spanking of the day. We do not act like that. You will get in the shower. You need to breathe. "I not want to breathe." And so we're in the shower together, because I have no other way at this point, and he asks to be held. He breathes deep with his hands on his belly. "I love you mommy." I love you Liam.
----------------------------------------
When you have MS, social situations can seem like you're tripping on LSD or something. Like you're listening to Pink Floyd while watching Wizard of Oz. So I've got about 20 things going on in the room. Candles everywhere. Fire roaring. Son not wanting to eat. Music. Food. Eccentric guests. Loud voices...Music. 10 people at a table for 4...Son wanting to play. Where are the toys I brought...so hungry...darling where'd you get that dress...music...mommy I'm hungry I don't like this........can you pass me the........if it's not too much trouble............shrieking laughter..........clapping.......music music music....honey don't touch that.......bite of food......breeze from the window........take a bite of the music.......candles....don't touch that.....tell me a little about yourself.................................................how are you.......what do you like to candles......music.......breeze.......don't touch that...........so you work in.............oh Libbie can do that................Liam you need to eat......................at last my life is like a song......................please don't touch that................................................................everyone talking at once...................andy he had a terrible day I couldn't eve............oh your grandmother just died........................I'm sorry.............hug me........................mommy....................................................music.............................................fire..................................................................this...............is................not...................fun.....................
and then they wonder why we don't like going out in social situations.
The Gusher asks me where I got my dress. "Ann Taylor. Clearance. Gift card."
The Gusher asks me where I get my son's clothing. "Consignment."
The Gusher asks me how I like my short hair. I touch my hair. I hadn't styled it. "I like it."
The Gusher asks me if we're having more children. "Maybe? Not now."
The Gusher asks if it was a medical concern. "I have MS."
Silence.
And here it is. The huge elephant in the room. Gusher of course gushes. Tells me I'm beautiful. Asks if it's terminal... terminal...really? Grabs Andy's hands and tells him she's SO SORRY. This must be SO SAD for him. Then she calls her Uber car. She drinks another glass of wine. Someone spills her glass of wine. The party stops so they can clean it up. The moment is over. I take my glasses off, hoping they're adding to the insanity and lack of clarity of it all. It doesn't help. Gusher's arm movements are too big for the tiny apartment. She leaves. I think I like her...I think she'd like me if I wasn't flaring so badly. If I hadn't spanked my child 4 times that day. If I had not spoken of myself and turned the conversation back to her. If I was on my A game.
"I know all about MS." Room mate exclaimed in a wine-drunk kind of way. "The mylar is being eaten by your immune system and you have to take shots and shit. Interceron and all that." Yes. Mylar. Like a balloon. Shots and shit. Exactly. Interceron. You're an expert. Clearly. "My MS has made me what I am," I said clearly, "I own it. It's mine. It changed my life. It changed our marriage. Andy and I fight it together." "WHY would you celebrate that?" He slurred. "You have faith in GOD, so why not just celebrate that by His stripes you are healed?" I stared at Andy. Gusher threatened to call for an Uber again. Room mate assured her he was fine to drive. Liam asked to pee. Pee. Uber. MS. mylar. interceron. faith. the music is so loud. We need to go.
I didn't say goodbye to anyone. The stairs in the place are ridiculously treacherous. I told Liam to go down on his butt and not stand up no matter what until he got to the bottom. I held on to the walls as I inched my way down, mentally calculating how to fall the most agile way, so as not to create ruckus, should I fall. I didn't fall. I breathed in the fresh air. Over.
"I wish I was the woman you married." I whispered to Andy in the car. "I wish this wasn't me." He held my hand. "I know." He said. "I know."
Wednesday, November 4, 2015
And in the end...
My grandmother passed away on October 29th at around 7:45 in the morning.
She went peacefully. With my grandfather's name on her lips. She knew where she was going. She knew what she was going to do when she got there. She wasn't afraid.
Tomorrow it will be a week. My dad and aunt went to get the ashes from the funeral home, and brought them back and promptly sat them on her mantle. The urn is cold and gray and decorated with what looks like a Greek pattern.
We all came to her house last night and took things that were meaningful to us. I felt like the Thenardiers from Les Miserables. Who wants this? Anyone interested in that? You want back this thing you gave her?
Clothing was taken from the closets and put in large black trash bags.
Jewelry boxes were opened and displayed. Nothing of real value, except sentiment.
China cupboards were emptied and the contents arranged haphazardly on folding tables.
We all walked around with our hands behind our backs, surveying the loot like museum artifacts.
Everything came with a memory. Things that did not hold sentimental value were put in a pile to be donated along with the toaster and the like. As we would touch objects, we would recall the moments we remembered with them. The coffee mugs. The items she would ALWAYS have on the coffee table. The things she had hanging on the walls for as long as any of us could remember.
I remembered this key chain she had- pappy gave it to her. It had a $20 bill in it ever since I could remember. She said it was there for an emergency. An emergency she never had, apparently, because when we went through her purse it was still there. Her purse was actually stolen once in a store. The robbers took her wallet and chucked the rest of the purse out of the car window. They should've kept the keys. There was probably more money in the key chain than in her purse.
We also came across all this stuff she never used. Like. Ever. Like, hadn't seen the light of day since their wedding day. She had everything labeled- that was her thing. Little tiny bits of paper with her polite handwriting on them.
"Bought this from a little old peddler man. My first real ring."
"The scratches on this chest are from Newton jumping up on it to look at the window."
"Candles given by maybe Francie Frank I'm not sure."
And on and on. Everything was a treasure.
Liam wanted in on the action, of course, and so I told him he may only pick the things that made his heart sing. "If you pick something up and you can feel your heart sing, you may ask permission to have it. Everyone needs to be mindful of everyone else."
He came home with a coffee mug, a small blue vase, a baby food maker, some wind chimes and other outdoor items, kaleidoscopes, some small cars, and a pocket knife in the shape of a train. Some absolutely amazing treasures for a 3 year old boy. He held the pocket knife in his pocket like it was going to jump out and fly away if it wasn't grasped tightly. He was so proud.
I took silly things. A cup I remembered drinking from. Door stops I had always admired. A locket I found. Some wooden boxes I thought were cool. The glass bottle of water she always kept next to the fridge because she didn't like cold water. A few boxes of table linens she never ever opened. Everything odd and old and precious to me.
Andy was given his choice of pocket knives and also requested a signed head shot of a band leader from the 40's. She had apparently sent away for it when she was young because the envelope only said her name, the street she lived on and the town. Who needs a house number? He quietly followed me around the house, taking objects from me and carefully arranging them in boxes to be taken home.
By the end of the night I had six boxes, a small side table, and a bench my grandfather made. It was sobering at best. I had never wanted anything at my Nanny's house but Nanny. Her giggle. Her laugh. The way she would get down on her knees and play with her GREAT grandchildren. The way she loved Pappy. And us. And Liam. How she'd never smile for pictures because she always hated her smile. How she always dreamed of red hair and freckles...
Those things can only live in my heart, not in my home. So I will take this moment to re-evaluate. Why am I keeping clothing "just for nice"? Why do we have dishes we never use? Use them! Because it's not the boxed items that people went for first last night- it was the worn stuff. The table with the scratches. The dumb plastic cup you always reached for. Those are the things that create memories- not the linens that haven't been out of the box since the 40's.
And in the end, the love you take is equal to the love you make.
She went peacefully. With my grandfather's name on her lips. She knew where she was going. She knew what she was going to do when she got there. She wasn't afraid.
Tomorrow it will be a week. My dad and aunt went to get the ashes from the funeral home, and brought them back and promptly sat them on her mantle. The urn is cold and gray and decorated with what looks like a Greek pattern.
We all came to her house last night and took things that were meaningful to us. I felt like the Thenardiers from Les Miserables. Who wants this? Anyone interested in that? You want back this thing you gave her?
Clothing was taken from the closets and put in large black trash bags.
Jewelry boxes were opened and displayed. Nothing of real value, except sentiment.
China cupboards were emptied and the contents arranged haphazardly on folding tables.
We all walked around with our hands behind our backs, surveying the loot like museum artifacts.
Everything came with a memory. Things that did not hold sentimental value were put in a pile to be donated along with the toaster and the like. As we would touch objects, we would recall the moments we remembered with them. The coffee mugs. The items she would ALWAYS have on the coffee table. The things she had hanging on the walls for as long as any of us could remember.
I remembered this key chain she had- pappy gave it to her. It had a $20 bill in it ever since I could remember. She said it was there for an emergency. An emergency she never had, apparently, because when we went through her purse it was still there. Her purse was actually stolen once in a store. The robbers took her wallet and chucked the rest of the purse out of the car window. They should've kept the keys. There was probably more money in the key chain than in her purse.
We also came across all this stuff she never used. Like. Ever. Like, hadn't seen the light of day since their wedding day. She had everything labeled- that was her thing. Little tiny bits of paper with her polite handwriting on them.
"Bought this from a little old peddler man. My first real ring."
"The scratches on this chest are from Newton jumping up on it to look at the window."
"Candles given by maybe Francie Frank I'm not sure."
And on and on. Everything was a treasure.
Liam wanted in on the action, of course, and so I told him he may only pick the things that made his heart sing. "If you pick something up and you can feel your heart sing, you may ask permission to have it. Everyone needs to be mindful of everyone else."
He came home with a coffee mug, a small blue vase, a baby food maker, some wind chimes and other outdoor items, kaleidoscopes, some small cars, and a pocket knife in the shape of a train. Some absolutely amazing treasures for a 3 year old boy. He held the pocket knife in his pocket like it was going to jump out and fly away if it wasn't grasped tightly. He was so proud.
I took silly things. A cup I remembered drinking from. Door stops I had always admired. A locket I found. Some wooden boxes I thought were cool. The glass bottle of water she always kept next to the fridge because she didn't like cold water. A few boxes of table linens she never ever opened. Everything odd and old and precious to me.
Andy was given his choice of pocket knives and also requested a signed head shot of a band leader from the 40's. She had apparently sent away for it when she was young because the envelope only said her name, the street she lived on and the town. Who needs a house number? He quietly followed me around the house, taking objects from me and carefully arranging them in boxes to be taken home.
By the end of the night I had six boxes, a small side table, and a bench my grandfather made. It was sobering at best. I had never wanted anything at my Nanny's house but Nanny. Her giggle. Her laugh. The way she would get down on her knees and play with her GREAT grandchildren. The way she loved Pappy. And us. And Liam. How she'd never smile for pictures because she always hated her smile. How she always dreamed of red hair and freckles...
Those things can only live in my heart, not in my home. So I will take this moment to re-evaluate. Why am I keeping clothing "just for nice"? Why do we have dishes we never use? Use them! Because it's not the boxed items that people went for first last night- it was the worn stuff. The table with the scratches. The dumb plastic cup you always reached for. Those are the things that create memories- not the linens that haven't been out of the box since the 40's.
And in the end, the love you take is equal to the love you make.
Thursday, October 22, 2015
Because I could not stop for death...
It kindly stopped for me.
The Carriage held but just Ourselves –
And Immortality.
We slowly drove – He knew no haste
And I had put away
My labor and my leisure too,
For His Civility –
We passed the School, where Children strove
At Recess – in the Ring –
We passed the Fields of Gazing Grain –
We passed the Setting Sun –
Or rather – He passed us –
The Dews drew quivering and chill –
For only Gossamer, my Gown –
My Tippet – only Tulle –
We paused before a House that seemed
A Swelling of the Ground –
The Roof was scarcely visible –
The Cornice – in the Ground –
Since then – ‘tis Centuries – and yet
Feels shorter than the Day I first surmised the
Horses’ Heads Were toward Eternity –
----------------------------------------------------------------------------------------------------------------
My grandmother is dying.
She's got cancer. Does anyone die of anything other than cancer anymore? Ugh. My Pappy (her husband) died of pancreatic cancer. My mom's parents died of bladder and lung. Now my last Nanny, my favorite one out of any of them, lung as well. Not smokers lung, just...that's where it lives.
She's hallucinating now. It won't be long for her. We thought it was going to be yesterday, so we all dropped everything we were doing and ran to her. In the car I prepared this whole heartfelt speech to give to her. I came in holding Liam and went to her bedside and I delivered it with gusto. Sobbing and crying the whole time. But I said what I needed to.
I told her, "Nanny, YOU DID AWESOME. You have raised us to be good people who love God. You've taught us to pray. You've been our prayer warrior. Make sure you check in with Jesus before you go running to Pappy. And when you find him, tell him we miss him every day. Tell him we all found wonderful spouses and he'd love them. But Nanny, you've done AWESOME. And it's okay to go now. We love you so. Very. Much." And through the morphine and the blank expression on her face...she started to cry. Her eyes were closed but her mouth crinkled up and she whimpered. I repeated over and over- "I. Love. You." She held my hand and wouldn't let it go.
Pastor Trevor came. He prayed over her. Read her scripture. Assured her of her Salvation in Christ. Prayed over her. Prayed with us. He took Liam over to play with his children, which worked out so well. He brought us supper. MAN, we're going to miss this guy. He isn't even my Nanny's pastor.
So we sat. And we waited. Hospice nurse came. "Could be hours...could be days."
So we sat. And we waited.
breath...1...2...3...4...5...6...7...8...breath...1...2...3...4...5...6...7...8...breath...
Her heart is strong, but her body is failing. I was reading their systems shut down one at a time- digestion first. Heart and lungs last. When you're sitting there watching someone die, your mind does weird things and goes weird places. You start contemplating the meaning of life. You start wondering how you will go. Just because I have MS doesn't mean it will kill me. It's not going to help my case though.
I was sitting there on the sofa with my cousins, watching the breathing and knitting a blanket for a long awaited baby, contemplating how the end of life is SO MUCH like the beginning of it. You're pregnant for SO LONG, and then you finally can't stand it and you must deliver. Your brain stops loving the kicks and the caress of the belly, and you sorta get angry about it, which is the fuel to help you push that little sucker OUT. When death is immanent, you make your peace with it. You don't WANT it to happen, but you allow yourself to explore it mentally and you become "okay" with it. If that's possible. And then you start to see the suffering of the patient and the care givers and you think- okay, this NEEDS to happen. And in that is the strength to get you through the actual breathing of the last breath.
breath...1...2...3...4...5...6...7...8...breath...1...2...3...4...5...6...7...8...breath...
Nobody knows our last breath. Not even us. I wouldn't want to know.
So we will continue to sit. And wait.
The Carriage held but just Ourselves –
And Immortality.
We slowly drove – He knew no haste
And I had put away
My labor and my leisure too,
For His Civility –
We passed the School, where Children strove
At Recess – in the Ring –
We passed the Fields of Gazing Grain –
We passed the Setting Sun –
Or rather – He passed us –
The Dews drew quivering and chill –
For only Gossamer, my Gown –
My Tippet – only Tulle –
We paused before a House that seemed
A Swelling of the Ground –
The Roof was scarcely visible –
The Cornice – in the Ground –
Since then – ‘tis Centuries – and yet
Feels shorter than the Day I first surmised the
Horses’ Heads Were toward Eternity –
----------------------------------------------------------------------------------------------------------------
My grandmother is dying.
She's got cancer. Does anyone die of anything other than cancer anymore? Ugh. My Pappy (her husband) died of pancreatic cancer. My mom's parents died of bladder and lung. Now my last Nanny, my favorite one out of any of them, lung as well. Not smokers lung, just...that's where it lives.
She's hallucinating now. It won't be long for her. We thought it was going to be yesterday, so we all dropped everything we were doing and ran to her. In the car I prepared this whole heartfelt speech to give to her. I came in holding Liam and went to her bedside and I delivered it with gusto. Sobbing and crying the whole time. But I said what I needed to.
I told her, "Nanny, YOU DID AWESOME. You have raised us to be good people who love God. You've taught us to pray. You've been our prayer warrior. Make sure you check in with Jesus before you go running to Pappy. And when you find him, tell him we miss him every day. Tell him we all found wonderful spouses and he'd love them. But Nanny, you've done AWESOME. And it's okay to go now. We love you so. Very. Much." And through the morphine and the blank expression on her face...she started to cry. Her eyes were closed but her mouth crinkled up and she whimpered. I repeated over and over- "I. Love. You." She held my hand and wouldn't let it go.
Pastor Trevor came. He prayed over her. Read her scripture. Assured her of her Salvation in Christ. Prayed over her. Prayed with us. He took Liam over to play with his children, which worked out so well. He brought us supper. MAN, we're going to miss this guy. He isn't even my Nanny's pastor.
So we sat. And we waited. Hospice nurse came. "Could be hours...could be days."
So we sat. And we waited.
breath...1...2...3...4...5...6...7...8...breath...1...2...3...4...5...6...7...8...breath...
Her heart is strong, but her body is failing. I was reading their systems shut down one at a time- digestion first. Heart and lungs last. When you're sitting there watching someone die, your mind does weird things and goes weird places. You start contemplating the meaning of life. You start wondering how you will go. Just because I have MS doesn't mean it will kill me. It's not going to help my case though.
I was sitting there on the sofa with my cousins, watching the breathing and knitting a blanket for a long awaited baby, contemplating how the end of life is SO MUCH like the beginning of it. You're pregnant for SO LONG, and then you finally can't stand it and you must deliver. Your brain stops loving the kicks and the caress of the belly, and you sorta get angry about it, which is the fuel to help you push that little sucker OUT. When death is immanent, you make your peace with it. You don't WANT it to happen, but you allow yourself to explore it mentally and you become "okay" with it. If that's possible. And then you start to see the suffering of the patient and the care givers and you think- okay, this NEEDS to happen. And in that is the strength to get you through the actual breathing of the last breath.
breath...1...2...3...4...5...6...7...8...breath...1...2...3...4...5...6...7...8...breath...
Nobody knows our last breath. Not even us. I wouldn't want to know.
So we will continue to sit. And wait.
Thursday, October 15, 2015
Peace be with you.
Liam's birthday was last week! Hip hip!
I kept it EXTREMELY low key this year, and that's not a lie. My anxiety level was so high, I was about ready to call the whole thing off. The "theme" was Toy Story Drive In. So I borrowed a projector and my parents set up the garage as a movie theater. I rented a popcorn machine, which I think the adults liked as much as the kids. We made tacos to eat. There were under 30 people there- 10 of which were little ones. It was fun!
I planned to invite my good friend from up north- one of those people who upon the first meeting, there was some instant clicking going on. Lots of laughter. Talking. Smiling. Hugs when departing. You know the kind- natural friendships. So I invited her to Liam's party. She bought train tickets. She and I began to plan our visit.
My mother in law had other plans.
"She's not welcome. And I couldn't possibly have a good time if I knew she was going to be there."
Really?
"I think she's loud and opinionated. She makes me feel awkward."
Pot calling the kettle black much?
"I don't want her there."
--So what, pray tell, would you have me do?
"I don't know. I could be the adult here, but I don't feel like it. I don't want her there."
At this point, I erupted. (I feel it prudent to mention I was in the bathroom at the time. Liam was opening gifts for his ACTUAL birthday DAY, my parents were downstairs, we had just finished cake... And for those who aren't parents, there's a little siren which goes off when kids realize their parents are on the phone. It's much like a dog whistle...but it encourages kids to just run WILD and get into every possible thing they can get their grubby little paws on. This requires multi tasking. AND ANOTHER THING. I hate talking on the phone. Just laying there talking frustrates me to no end. Multi-task. The end.)
What I said went something like "ARE YOU KIDDING ME? FINE. I'LL UN-INVITE HER."
"Well I mean I just-"
"STOP TALKING. I SAID I'D UN-INVITE HER. WHAT ELSE DO YOU WANT?"
"I know how this sounds."
At this point, I wanted to reach through the phone and grab her. Yes, I know how this sounds. You are CHOOSING to make a poor decision. "I could be an adult, but I choose not to be." One thing my MIL loves are peace signs. She's a grown up hippy. But not the kind who does sit ins and rallies for the whales. No no. She wears peace signs. They're on her walls. In her art work. On her shirts and earrings. Peace peace peace. Except for unwanted guests. Except for people she decides are "not one of us."
This is like claiming "I'm pro-life! No abortion! Save the babies!" And then in the next breath condemns "illegals" to get out of our country. I'm pro-life! Just. Not YOUR life.
Our pastor is leaving our church. It saddens me GREATLY because we love him and his family. They are our best friends, quite literally. They have three great kiddos, and we all have lots in common. For a church who practices "peace," we're not seeing much of it. Many times where strong opinions are voiced, the need to be heard outweighs the need to practice peace.
We went out for breakfast the other morning. Andy ordered eggs over easy. The waitress came to our table bearing his eggs and a terrible look on her face, "Sir. I bumped your toast and it broke your egg yolk. I'm SO SO SORRY. I can take it back." Andy looked at her and gently said, "Oh I don't care. I'll break it myself here soon!" She breathed a sigh of relief, "Thank you so much. You wouldn't believe how people get so upset over that."
I could choose to love refugees entering our country out of fear, but I don't want to. They should get their papers like everyone else. Women and children be damned.
I could choose to speak to the pastor about my concerns, but an anonymous letter seems like a more valiant way to get my point across.
I could choose to look at my waitress making minimum wage as a person and ignore my broken yolks, but, eh, she should get a better job anyway.
I could choose to be an adult, but I don't want to.
As an aside, my inlaws never made it to the party. My MIL had a high BP and went to the ER and they found out she had strep. She's got a medical heart issue- I'm not sure what it's called. But high BP could be fatal. Maybe it's time to let bygones be bygones and let go of some hate.
My friend was gracious and did not attend the party. She changed her train ticket for Thanksgiving, which seems like an awesome time to be together with the people you love.
Grace and Peace be with you.
(And also with you.)
I kept it EXTREMELY low key this year, and that's not a lie. My anxiety level was so high, I was about ready to call the whole thing off. The "theme" was Toy Story Drive In. So I borrowed a projector and my parents set up the garage as a movie theater. I rented a popcorn machine, which I think the adults liked as much as the kids. We made tacos to eat. There were under 30 people there- 10 of which were little ones. It was fun!
I planned to invite my good friend from up north- one of those people who upon the first meeting, there was some instant clicking going on. Lots of laughter. Talking. Smiling. Hugs when departing. You know the kind- natural friendships. So I invited her to Liam's party. She bought train tickets. She and I began to plan our visit.
My mother in law had other plans.
"She's not welcome. And I couldn't possibly have a good time if I knew she was going to be there."
Really?
"I think she's loud and opinionated. She makes me feel awkward."
Pot calling the kettle black much?
"I don't want her there."
--So what, pray tell, would you have me do?
"I don't know. I could be the adult here, but I don't feel like it. I don't want her there."
At this point, I erupted. (I feel it prudent to mention I was in the bathroom at the time. Liam was opening gifts for his ACTUAL birthday DAY, my parents were downstairs, we had just finished cake... And for those who aren't parents, there's a little siren which goes off when kids realize their parents are on the phone. It's much like a dog whistle...but it encourages kids to just run WILD and get into every possible thing they can get their grubby little paws on. This requires multi tasking. AND ANOTHER THING. I hate talking on the phone. Just laying there talking frustrates me to no end. Multi-task. The end.)
What I said went something like "ARE YOU KIDDING ME? FINE. I'LL UN-INVITE HER."
"Well I mean I just-"
"STOP TALKING. I SAID I'D UN-INVITE HER. WHAT ELSE DO YOU WANT?"
"I know how this sounds."
At this point, I wanted to reach through the phone and grab her. Yes, I know how this sounds. You are CHOOSING to make a poor decision. "I could be an adult, but I choose not to be." One thing my MIL loves are peace signs. She's a grown up hippy. But not the kind who does sit ins and rallies for the whales. No no. She wears peace signs. They're on her walls. In her art work. On her shirts and earrings. Peace peace peace. Except for unwanted guests. Except for people she decides are "not one of us."
This is like claiming "I'm pro-life! No abortion! Save the babies!" And then in the next breath condemns "illegals" to get out of our country. I'm pro-life! Just. Not YOUR life.
Our pastor is leaving our church. It saddens me GREATLY because we love him and his family. They are our best friends, quite literally. They have three great kiddos, and we all have lots in common. For a church who practices "peace," we're not seeing much of it. Many times where strong opinions are voiced, the need to be heard outweighs the need to practice peace.
We went out for breakfast the other morning. Andy ordered eggs over easy. The waitress came to our table bearing his eggs and a terrible look on her face, "Sir. I bumped your toast and it broke your egg yolk. I'm SO SO SORRY. I can take it back." Andy looked at her and gently said, "Oh I don't care. I'll break it myself here soon!" She breathed a sigh of relief, "Thank you so much. You wouldn't believe how people get so upset over that."
I could choose to love refugees entering our country out of fear, but I don't want to. They should get their papers like everyone else. Women and children be damned.
I could choose to speak to the pastor about my concerns, but an anonymous letter seems like a more valiant way to get my point across.
I could choose to look at my waitress making minimum wage as a person and ignore my broken yolks, but, eh, she should get a better job anyway.
I could choose to be an adult, but I don't want to.
As an aside, my inlaws never made it to the party. My MIL had a high BP and went to the ER and they found out she had strep. She's got a medical heart issue- I'm not sure what it's called. But high BP could be fatal. Maybe it's time to let bygones be bygones and let go of some hate.
My friend was gracious and did not attend the party. She changed her train ticket for Thanksgiving, which seems like an awesome time to be together with the people you love.
Grace and Peace be with you.
(And also with you.)
Tuesday, October 6, 2015
It's Me! Only...better.
In the last 10 months, I have been on a quest. Better me. Better life. Better family.
Move forward. Move up. Just move.
After the Great Barfing of 2015 (let us never forget...) life went on. My MS remained in remission...until it flared again. I could feel everything, it wasn't a relapse. It's just all those ridiculous shots I was giving myself? Yeah, not working. Not even a little. More lesions on my brain.
Then came the great schism of the insurance companies. Geisinger stopped "participating" with Pinnacle. What does that even mean? Well for starters, I got to find all new doctors for myself AND Liam. OBGYN to pediatrician, neurologist to PCP. Go ahead and transfer all those files and find someone new to confide in. You'll be fine. You mean you've been going to the same OBGYN since you were 16? Awww. That's adorable. Go ahead and find a new one.
The new neuro stared at my chest the whole time. "My job is to keep you out of a wheel chair for as long as possible." He so pointedly remarked. Wheelchair? What? I didn't think I was that bad? He showed me my MRI (up until now I'd never seen one) "All these white spots are lesions. You need another medication."
My new med was proven to drop your heart rate in the first dose, so you needed to be under the care of a doctor for 8 hours to make sure if I dipped, I didn't dip too far. And if I dipped too far...well. Someone to bring me up again. They came to my home and took my blood. Blood didn't make it to the lab in time (snow storm). Had to have it drawn again. Then the doctor who was supposed to come the very next day to do the first dose quit. Two weeks later, they found a new doctor. He was a slight fellow, interesting enough to make the day progress quickly.
MuckFest came and went. My team was wonderful this year. This year it was different. Last year was awesome, but this year was more...spiritual somehow. The one member of my team, Linda, had lost her husband at Christmas. Our pastor and his wife were on my team. Zoi, my new aunt, was on our team. Lives were changed. I was in the ER with breathing issues 4 days ahead of time. Anxiety, they said. I believed it.
6 months later, no new lesions. No change. "Condition stable." To God be the glory. See you again in 6 months to check again.
I twitch now, which is like, ugh. Seriously? Makes me look like some Tourettes patient. It's not too bad, just irritating. Gets worse when I'm nervous. The end.
There's something extraordinary about being the best version of yourself you can possibly be. It's like being me...only better.
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