On Showing Up

The Ability 411, a group I mentioned  in my post entitled "On Being Called Beautiful," dedicated their videos this week to teaching others how to comfort a friend or family member who has just been in an accident that left them with a disability. I find it very telling that each person said that the most important thing a friend can do is simply to show up. It helps to come and sit in a hospital room in silence. It helps to call someone and let them breathe into the phone. It helps to send a text that only says "You can count on me." or "I love you." This of course is not only true when a loved one has suffered a life-changing injury, but when a loved one is going through anything difficult.

I bring this up because I think a lot people have a fear of saying the wrong thing to someone in dire straits. As someone who has been in dire straits several times, like most humans have been, I can tell you, the fact that you want to say something comforting, means just as what comes out of your mouth or from your pen. Actually, because we are mortal and therefore unable to instantly fix one another's problems with loving  sentiments, your desire to comfort may mean more than your words.

Until you show up though, in some way, that desire is unknown to everyone but you and thus has very little meaning. In one of the weirdest movies I have ever seen, the main character says "Any asshole in the world can love somebody, it what you do with people you love that matters." This is totally true; nobody is a mind-reader especially not when they are struggling.   However, lines like that imply that it is imperative to do something big; that is untrue. Showing up is often doing more than enough. We all get sad and scared; we have experiences that are terribly unfair. The idea that in those circumstances we need someone to say the correct string of phrases, or perform the correct series of actions, is a huge misconception. We just need someone. 

I am sure any reader can think about their past and find truth in what I am saying. When you look back on the hardest day of your life, whatever it might have entailed, do you ever think "I wish so-and-so would have said XYZ"? Probably not. You probably have said , "I wish so-and-so would have been there for me".  Look back on the best day of your life. Did you think "S/he should have told me XYZ" or "They day would have been even better if s/he was happy for me."? Probably the latter.

This whole post goes back to the old saying, "People  will forget what you say and do, but remember how you made them feel."  Your presence, mentally or spiritually, if not physically, will make anyone about whom you care, feel cared about. That's all they can ask of you. More than likely, it's all they want from you if they are depressed.
Don't spend hours thinking of the perfect thing to do or say, just do or say something. It will be more helpful than anyone will ever know. 

On Assumptions about the Disabled

On one of my online classes, somebody asked me what the most annoying part of being disabled was. The worst part is, constantly having to rebuke assumptions. That inspired this post. I thought I’d bust ten of the most annoying myths out there by listing some should- be- obvious facts about those with disabilities.         

• Unless we tell you we can’t hear you, we can hear you. I can’t count the number of times people have spoken to me like I have a hearing impairment. It really is embarrassing to have to explain to people that I don’t have one. Though over the years I've  found it funny more the anything.
• Most of us are of average intelligence. There is no need to explain things one wouldn’t explain to an able-bodied 23 year old.
•           We can have sex. We do have sex. When I get asked if I can, I usually answer politely, but I want to respond, “That’s none of your Goddamn business!”
•     A lot of us have very successful careers. When people act in awe of that, it’s condescending.
•        We’re not offended, when you swear, drink ,or make dirty jokes. I swear drink, and make dirty jokes.
•        Most of us have extremely high pain tolerances. You can’t hurt me by bumping my leg.
•       A lot of the people I know and I are thankful for the prospective being disabled gives us.
•          We don’t need protecting. My friends defend me like I would defend them—it’s a beautiful thing. I don’t need strangers asking me if I’m okay every ten minutes.
•          Disabled people might be shy or they may be outgoing, just like everyone else. I personally love to meet new people; my friends aren’t being mean if they don’t spend every second of a social event making sure I’m entertained.
•           We just want what everyone wants. We strive to be happy. It’s not important to the majority of us to be an inspiration or a trailblazer.

On Kindness, Forgiveness and Multi-dimensional People

I must be in a very outspoken mood today, because over the past fourteen hours I have thought of four different subjects for a blog post. My grandpa, learning styles, gossip, and bullying. Well, here’s the thing, I am an English major. I have not been groomed to take logical steps towards a particular, much needed conclusion, but rather to look at different pieces of humanity and recognize the themes that run steadily through them. Both are necessary processes, I just happen to be bad at the first one.  After spending time remembering my grandpa this morning, it was not difficult to see the common thread in these four  topics.  I’ll attempt to write a concise and coherent post about it, but just in case I fail, I’ll come out at the end and give you the moral of the story, if you will.

My mother’s father passed away two months before I turned fifteen. He was the smartest guy most people who had met him, had ever met. My grandma used to make him watch Jeopardy every week, even though he didn’t like the show, because she swore up and down, she had never heard him miss a question. He read more than anybody, and retained everything he read. They lived right behind us growing up, and he was in my life every day.  There is nothing for which I am more grateful to my parents. I’ll never forget the hours he spent telling me about history, science, mechanics, sports, music and his very interesting life. Grandpa wasn’t a person who someone would assume to be brilliant, though. He was sloppy, obstinate and about the worst speller known to man. His laziness and messy habits drove my grandma, who was madly in love  with him, to scream daily.  He taught me, without my knowing it that every human being has three or four sides. The most important lesson Grandpa taught me however, was to focus on the good-sides of people. He never met anybody he didn’t like and forgave all of his loved ones countless times. He did his best to hold his friends and family in what educational professionals call unconditional positive regard, choosing to remember the attributes people possessed and let go of their shortcomings.  It was his happy-go-lucky personality  that made people forgive the disheveled know-it-all he could be.

Bullying and gossiping are wrong.  I know a lot of us have been bullied and arose unharmed.  I know all friends engage in back-stabbing at some point. The fact is though that for all the time you spend breaking someone down by highlighting their flaws, you could  building them up by highlighting their assets.  It’s the right thing to do. And if that’s not enough motivation for you, remember:  you will make huge mistakes. You will gossip and you may bully, but if in the past people   know you to be a kind, loving person, they are more likely to see the good side of you. They will forgive. If you  accept all of this as truth, then it stands to reason that if someone has generally been a decent friend to you, you should give them a couple of chances to hurt you before they pay for it. When you care about someone you have to have faith that eventually, you’ll see the person you enjoy again.

The moral: Be kind and let go. It’s what the smartest, nicest, happiest, messiest, most stubborn, and absent minded man I know would have done!

She and Adam .... Revisited

I changed some significant things in the story  edited a little and added to it some. I am just  going to post the whole thing again because some of the changes are near the beginning I think with work, it could end up okay.

She and Adam.

She didn’t know what she was doing. How do you write about someone like him? How do you tell the world about the injustices he suffered, and tell them how loved he was? How do you describe how horrific and fantastic it was to be a part of his life? Her undergrad degree in creative writing, that the dean of the University of Massachusetts had handed her  six and a half years earlier, hadn’t prepared her for the emotional ride an author takes when writing words that tear at their heart. She had never wanted to write about what happened. She never wanted to think about it again, and she wouldn’t have either, but her dad had asked her to try to tell Adam’s story, and her dad had never asked her for anything. So she opened up a word document with her brother’s name in the header, and did what her favorite professor always told her to do. She started at the beginning.
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Adam Joseph Miller was born on July 12, 1987, exactly three months after I turned six. The sister between us, Bailey, was three and much less enthused than I about the arrival of our new sibling. She had always been very attached to mom, and often became inconsolable after ten minutes of her unexplained absence. It had been ten hours.   I remember Aunt Diane attempting to calm with sleep in her eyes, “Go to bed now, and next time you see your mama, she’ll be holding the baby!” “You’ll be a big sister now, too!” I said, trying to help, nothing worked.  It’s surprising to me now that Bailey is the most well adjusted person in our family. When Adam’s life began to unravel, we all worried the most about her. She had a ringside seat, and a habit of blaming herself for things she couldn’t control. 

After making sure Bailey was asleep,  My aunt, who always went out of her way to make me feel like I was her favorite, told me I could sleep in her bed, in case news of the baby’s birth came in the middle of night.  It did. True to character, Adam entered the world at 2:35 AM.  Aunt Diane took us to the hospital right after breakfast. I was so excited to meet him that I demanded it. I ran straight to my dad because I knew Bailey would make a bee-line for mom and I didn’t want to get caught the cross-fire. “The biggest sister!” he half-whispered enthusiastically as he picked me up, “Mom had a little boy; you have a brother.”  He laid me next to my mom who kissed me softly on the forehead three times, like always, and I saw him. My brother!  His arms already had rings of fat around them, and his eyes were wide open. Bailey had curled up into mom’s other shoulder, she asked to hold him first. Apparently, all the “I don’t want a new baby”, feelings from the night before had disappeared.  She sang “You are my Sunshine”, to him and then it was my turn.  I kissed `and kissed and kissed his cheeks!  Both my sister and I were both as in love with him as we’d ever been with anybody or anything.  For a year, almost every interaction I had with Bailey was fighting over him. We fought over who sat closest to him at the dinner table, which one of us got to hold him while mom vacuumed the house; we even wanted to help change his diapers.

It wasn’t just us—as Adam grew up, it was obvious that all of our neighbors and family-friends thought he was the most adorable. His sandy hair, perfect olive skin and aqua blue eyes, were an irresistible combination. They were nothing compared to his smile though, and his laugh.   Both things can only be described as completely infectious and captivating.    Between the ages of four and seven, Adam would trot from door to door in the subdivision in which we lived, and tell the cheesiest knock-knock jokes know to man. Everybody would listen though, just to hear him crack himself at the end.

If you had told me then that, eighteen years after we met that precious baby boy, Bailey would be helplessly begging me to take Adam off her hands; I would have thought you were insane.

Just writing about his birth took her three hours, and the anecdote about his joke telling another forty-five minutes. She kept pausing to wipe away tears.  She was dreading the moment when she would have to stop writing about the little brother she loved and start writing about the stranger he’d become. It seemed impossible.  She shut her laptop and walked the kitchen. She didn’t really need coffee; she was probably too awake. Her husband and daughter were asleep though, and she needed a break, something to do that required no thought—so she filled the coffee pot with water and emptied it into the machine. She poured coffee granules into the filter and pushed the red button. She didn’t however stop thinking. She was suddenly livid. The brother she knew had left her a long time ago, and she wondered if his ghost deserved this. Dad refused to admit it, but Adam had shamed the family—wrecked their name. He had devastated lives, he had ended one. He broke her heart, Bailey’s heart. Marcus wasn’t a good guy, but he was some mother’s son.  No mother deserves the pain of burying their baby and no matter how much he hurt her sister, Marcus didn’t deserve to die. She smacked the counter in anger, and then she sat down.   For the first time all night she was not consumed with Adam, she was thinking about Maria. Her four year old daughter had never met Adam and of course, she wouldn’t. This idea made her quietly sob for a while, but then, oddly, it motivated her.   Maria would undoubtedly read about what happened one day, and if she only read the words of writers who didn’t know her uncle, it would be very easy for her to believe that she was related to a monster. That couldn’t happen. She tippy-toed down the hallway into her baby’s room and kissed her on the forehead three times.  “For you, little girl, for you and for dad.” She accidently whispered. She was sad, frightened and nauseated , but she didn’t need a third reason to tell Adam’s story.

I hate it, but over the years Adam and Bailey grew closer to one another than either one of them was to me.  This was partly because of personality.  They were both warmer than I am. I was driven; I didn’t have time to be warm. They confided in each other because they knew I’d scoff and tell them to get over it. I constantly encouraged them to push on, the way I had. When I was eleven, Bailey was badly bullied by another girl. She kicked Bailey and called her hideous while a couple of other kids watched. I remember that word, because after school, Bailey asked me, “Do you think I’m hideous?” I said, “Mom and dad hate when people fish for compliments. Tomorrow nobody will call you anything.”   Adam told her she was beautiful. He told her that Melanie was jealous of her pretty red hair. I was telling the truth, Mom and Dad had always preached that being self-deprecating was self-serving.  He told the more important truth. Bailey was beautiful. At five and eight, Adam and Bailey already knew something it took me a marriage and a pregnancy to learn. Most of the time people fish for compliments because they need them, and sometimes they deserve them. I’ll never understand why some people are just born with huge amounts of compassion, and why some of us have to work so hard at it. I’m not a cold person.  I guess, I wasn’t born with the gift of knowing what to say, so I try not to say anything.
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She highlighted and deleted the sentence, “I write my emotions down, and throw them away.”  Whoever was publishing this wouldn’t care about the way her mind worked; she didn’t kill anybody.
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My brother and sister became even closer when Mom was diagnosed with stage -three breast cancer. I was at the tale-end of my freshmen year of college, and decided after spending four days at home with my sick mother, that I needed to take summer classes. I couldn’t face what might happen to our family, so Adam and Bailey faced it together. It was only in the wake of Marcus’s murder that my dad told me how horribly my siblings had it. I inherited my refusal to handle heartache from my dad. He shut down. He restored  cars for hours after working the overtime he’d requested, and then he came inside, sat on the couch, watched re-runs of ‘60’s sitcoms, and drank a little beer.  Adam drove Mom to her chemo treatments and Bailey held her hair back while vomited the medicine that was supposed to be healing her.   Our Mom fought hard for two years, and then one night my dad called me and told me to drive home. When I got there Bailey was feeding her ice-chips and Adam was doing his best to make her laugh.

They saw her through cancer and at the end, when we all knew mom couldn’t hang on anymore, it was Adam who held her hand, and gave her our permission to leave us. Bailey hugged him and kissed her; she thanked our mother. I leaned down let my mom kiss my forehead three times and made an inadequate excuse to leave the room.  Mom died at one twenty-three in the morning on August 30, 2002. Adam was barely fifteen. He was never okay again. I thought for a long time, that our entire family would never be okay again. Contrary to what most people tell you though, a family can be okay without being whole.

Where did she go next, Bailey meeting Marcus? To the day she realized her brother was capable of evil? Did she want Maria to hear that story? Too many questions swirled around her; she couldn’t write anymore tonight.  She climbed into bed and pulled Nick’s arm over her.  Normally, she liked to sleep with plenty of space between her and her husband, but tonight she needed to feel him. His presence had calmed her down and warmed her up since they met at twenty.  She felt so fortunate when he pulled her in a little tighter. He loved the rare moments when she let him feel needed.  At three o’clock that morning she fell asleep not wondering why mental illness happened to people as wonderful as Adam.  Instead she was wondering why some women meet men like Nick so young, and others , ones as wonderful as her little sister, have to meet men like Marcus.

When she woke up the next morning she had a text message from Chrissie asking her what day would be best to meet for lunch. Chrissie was where she’d go next.

One of my best friends from college lost her mother in a car accident when she was thirteen. She was in the back seat of a mini-van when a semi-truck’s force threw her mom through the windshield, killing her almost instantly. Firemen had to pull Chrissie from the wreckage. She has two jagged, long, white scars on her tan, shapely legs that serve permanent reminders of the day her mom passed away. Her father offered to pay for a treatment that would make them less noticeable, but Chrissie told him to save his money. She said one night, after three daiquiris that the scars were the last things she and her mom got together, and that she was afraid that if they faded, her memory might fade a bit along with them. Of course, after three drinks, it didn’t come out quite like that.

Chrissie graduated as valedictorian of UMass nursing school and went on to become a nurse practitioner. She moved to Manhattan and is engaged to a man who could be an underwear model but chooses to work as a civil engineer instead. She is by far my most successful friends, and one of my happiest, too.

Chrissie’s life was much more traumatic my little brother’s. Don’t get me wrong, I knew it got to her. The day she graduated, I found her crying in the fetal position in the backseat of her car. The seemingly endless string of boys she took home until she met her sweet fiancé had to be filling of some kind of void but Chrissie moved on. After all that, she persevered.  

Adam had time to prepare for mom’s death. We all had the luxury for which Chrissie spent years longing, a chance to say “I love you, goodbye.”  For years, I was so angry Adam—and sometimes I still am. It didn’t make sense that our mother’s losing her battle with cancer could be the beginning of his end while Chrissie did so well. She had a better reason to be mad at the world.   

Now, I understand something that makes me angry with myself. When Adam lost mom, he lost the only person who recognized that he felt differently than most… the only person who saw that he was ill. He hid it from the rest of flawlessly and he wanted to be discovered.

She took out her phone told Chrissie Tuesday worked, and added an uncharacteristic “I’m so excited to see you!! XXOO” to the text.  She was always glad to get together with Chrissie, but today she felt like Chrissie just might need to know it.  Maybe, she thought, there is a tiny piece of every kid who had to grow up to fast—happy or not, that wants to be discovered.

My family went to several doctors in the months after what my father will probably always refer to as “that day.” We wanted to understand Adam. The problem was that Adam didn’t fit into any boxes. He was “overly cautious” but not quite paranoid. He had signs of mania, but they would not call him manic.  He lied a lot but they weren’t sure if it was pathological or deliberate. He had psychotic episodes—“moments when he lost with touch with reality” but seemed “generally aware of his surroundings of his actions.” According to the experts, Adam had a personality disorder, NDS: Not Otherwise Diagnosed. How the hell were we supposed to handle that? It’s not shocking that Adam couldn’t understand himself. We did not work hard enough to help him understand himself. My sister was the only of us even who tried.

Bailey noticed soon after mom’s passing that Adam was “very delicate”, that what she said to me a few days after the funereal.  I could kill myself now, for brushing it off the way I did. All the supportive souls who had surrounded us in the days immediately following our mother’s death had left us, and we were expected to keep living.  It felt to me like we were all far beyond delicate. I may have even gotten angry with my sister for expressing her concern, but I couldn’t say now. I have blocked so much of that time period out of my brain.

I remember one day though better than most in my life it was six months after mom died, Bailey had just started her second semester, at the community college and she had been dating Marcus for three weeks.

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When Bailey graduated high school, she tried to convince her to go to UMass like she had. Bailey hated school, but never had to study to earn A’s and she considered college her saving grace. Bailey wouldn’t leave their dying mother though; she had a difficult time leaving her mom when she was healthy. So,  She gave up and let her brilliant little sister stay home to watch their  mother die and take responsibility for a brother who would soon be out of control. She had never said it to anyone , not even Nick but, she wondered if she had pushed harder for Bailey to leave the house , if the events she was going to write about , would have even occurred. She wondered that every day.
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I had just gotten home from my six o’clock writing workshop when my phone vibrated and I saw Adam’s named on the screen.

“Hello.”

“He slapped her. The asshole fucking hit her!” I had never heard him so enraged, I’m sure, but I didn’t notice it then. My thoughts were with our sister.  I was enraged, too. I thought I was angrier than he was.  

I put down the phone and childishly counted to ten, hoping that would help somehow. In the weeks leading up to this, Adam had complained a lot about Marcus. He said he wasn’t good enough for Bailey, which I ignored, because he wasn’t. Nobody was.  He said Marcus was smoked crack. Bailey denied this, and like a lot of things Adam had said over the last couple of months it was proven to be untrue. Three weeks before this phone call, I drove home because Adam told me he had swallowed a bottle of my dad’s sleeping pills. I arrived to find him in the yard tossing a Frisbee to the neighbor’s dog. A wonderful thought ran through my head—this could be a lie.

“Let me talk to Bailey.” I said calmly.

When he passed the phone to her immediately, I knew she had really been hurt.

“Please come home.” Bailey whined quietly. It wasn’t her words, but the tone her voice that compelled me to run to my car in freezing weather, coatless. Bailey had never said anything that meekly.

I burst into the house, exhausted but filled with adrenalin, finally ready to comfort my broken siblings. They were sitting on the couch, laughing, engrossed in whatever was on TV.  They had found a way to get through this without me… again…..

“Marcus is out of my life.” Bailey reassured me when I kissed her cheek, three times.  If only that had been true.
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Nick snuck up behind her unaware of the tears collecting in her eyes, and nibbled gently on her neck.”Maria’s watching ‘The Little Mermaid’,” he whispered in her ear.  Their daughter was so entranced by that movie that she almost never looked away from the screen while it played. She had become so inquisitive and conversational in the two months since her fourth birthday   that  the time she spent watching it and the time that she spent sleeping were their only real opportunity they had to have sex without fear of her interrupting, and she had never napped for very long.

“Please… wife?” Nick teased her. He had been so good to her over the past couple of weeks. So sympathetic about the hell this writing was dragging her through, and accepting of how withdrawn she had been.  So, even though she was drained and the idea of being touched did not appeal her in the slightest, she pretended the his second kiss and the sensation of his thumb running from behind left ear to her shoulder, turned her on as it would have  under typical circumstances, and they made love.

Later when she was giving Maria a bath, Nick came into the bathroom kneeled next her and said matter-of-factly “You do not have to finish that story. Your dad will totally get it, babe. He’s just like you.”

That’s exactly why she had to do it.”I do have to, Nick. You know always finish what I start.”