Uncle Donnie’s Last Thanksgiving : Saying Goodbye and the Power of Touch

*This is the speech I read today at his funeral, written last night.

HERE is his obituary, if you’d please take a moment to read about his life.

Regrettably, I didn’t spend much time with Uncle Donnie. But I was happy when he moved to Illinois circa six weeks ago to Brookdale Assisted Living.

I never knew my grandfathers– both died before I could meet them. I visited his room three times, and twice in the ICU at Presence Medical Center in Joliet. I didn’t know exactly what to say– I felt a bit intimidated. But he made and effort to make me comfortable as if it were his own home. I found I liked him, though he was a bit gruff. He sat in his leather chair and I sat on the bed, and we shared a companionable silence. We watched TV.

Both of us had a hearing-loss, but he really struggled to hear me. I could see how much he struggled to communicate. Even speaking slowly and enunciating well, often I still failed to convey my words in a way he could understand. But he took an active role in our conversation and asked me questions when I was feeling shy.

In his mini-fridge, he had a few basics: green grapes, Cheesehead’s string cheese, Sprite and Hershey’s milk chocolate bars. Each time I visited, he would offer me anything available– he wanted to be hospitable. He ate the string cheese in bites, while I peeled it. Thought he possessed little, he was instinctively generous and wanted to share.

I regret that I waited till the tend of his life to cultivate a friendship with this gentle man. He wore a beautiful gold watch, and allowed me to clean it up for him. He trusted me so easily with what must have been a prized possession. He also wore two medals on a gold chain– St. Christopher, and St. Francis, I believe. He had a beautiful crucifix on his wall. Clearly, he was a devout Catholic man.

I never called him in Florida for the same reason I never reach out to many family members I wish I knew better- I don’t know what to say. But I learned while visiting that what we say does not matter-rather, it’s our gesture of reaching out that matters.

When my Dad told me he was in the ICU on Black Wednesday, I went to visit him. He had a breathing apparatus on, but recognized me when I touched his arm. A nurse came to draw blood and I held his opposite hand for support. I knew how much it can hurt. He didn’t fuss or complain as she did her job.

On Thanksgiving my parents and I went back, and I was able to see him one last time. He was less responsive, but still fighting. Breathing was hard for him. We watched TV.

Other family arrived. Uncle Donnie never spoke that day, but he responded immediately to touch. He would turn his face toward the person and it seemed to deeply relax him. I watched our family keep a vigil at his bedside- holding onto Uncle Donnie. Letting him known we were there, that he was loved. We took turns being alone and saying goodbye. We were sitting around his bed just talking normally, when I left for maybe 20 minutes. I came back and he had just been unhooked and passed. All of us cried. We prayed over him.

I’m grateful I was given this chance to know him. To have a few moments to experience what it must be like to have a grandfather. Our love for him brought us together on Thanksgiving and he made his peace with life, his beloved family, and departed.

Now I bet he’s up in Heaven, smoking his Pall Mall Menthol 100’s, eating a Hershey’s bar, and watching over us.

As my father said, our dear Uncle Donnie went home for Thanksgiving. Home to rest with our eternal Father.

Tiny Dancer, Driving Faster: My Fourth Time Doing Stand-Up

Just got home after doing stand-up for the first time since 2012, when I bombed: I wrote it about it

I’m back on the comedy horse!

I went to see a friend, and decided to sign up on a whim. And that’s exactly how it was the first time.

I loved the synchronicity. And my friend Andi, who passed this year, she would have loved it. She was the friend who inspired me to do it the first time. And also, the same friend who was bartending that night was also bartending this time– at a different bar. She’s changed jobs, we’ve lost touch.

It was good to see her.

I didn’t plan on getting on stage tonight so I just wore whatever: a thermal shirt, a flannel, jeans with a hole in them. Boots. A little eyeshadow, but no other make-up. I felt comfortable and yes, I loved the attention.

I had a list but decided to forego it. Beforehand, I nervously texted a few friends for moral support. I brought my water and just talked like I would to my friends. I was #16 tonight– about half the audience had left by then, so it was a smaller crowd.

And it was the best time I’ve had in months. The intimacy, the solidarity, the awkwardness… I love it.

Comedy is just so delightfully HUMAN.

Other comics told me about other open mics I should hit up. I just might. Life is to be LIVED.

Life is for laughing.

On the way home, “Tiny Dancer,” was playing. I sang along and just reveled in how lucky I felt. Tonight I ranted about being short and how it’s hilarious and also awful. About my hearing-loss, which got some of the best laughs. I can make fun of the things that make me angry, and it’s a wonderful stress relief. You say it, you feel better! It’s like the world is your confessional.

I know some people who consider stand-up comedy their religion and I gotta say, I’m starting to get it.

I made jokes about my self-defense class and my Dad’s dancing and whatever came to my head. I made eye contact with no one but just rambled on, and it WORKED. I got some laughs.

I noticed that my voice is WAY higher than I thought. I sounded like a chipmunk! Afterward a friend confirmed this. Aight, I’ll own it. But it’s not gonna shut me up.

Several comics after me gave me a shout-out, and a few came up afterward to high-five me. Not every open mic is this friendly, but it was just what I needed tonight.

My Chain-lock Heart, Writing, and Blocking Out the Noise

A few days ago, I came home and tried to enter the front door of my private apartment. Already inside the building.

However, when I tried to open the door, it jammed with a rattle. I forgot that I had put on the chain lock inside.

(Don’t worry, I have a back door!)

This is my life. I forget which door I locked, and sometimes have to go to the backdoor. Sometimes I locked that one instead.

I don’t always put it on, but I often do. And I tend to forget. I don’t have a great short-term memory.

Consequentially, I spent a lot of time re-tracing my steps– but my life is never boring!

And that moment, jamming against the chain lock,  is an apt metaphor to describe my life– in a few different ways.

Let me just tell you that I live in a small, safe building. I don’t even *need* a chain lock. But I’m hyper-vigilant about safety nonetheless.

I don’t let people in. It takes me a long time. And truthfully, many people run out of patience– especially in relationships.

Luckily, those who care develop patience with me. And that stability helps me to relax.

Love helps us to become patient.

There are a lot of aspects of my life that are uncertain– it’s hard for me to feel secure about most anything.

I have a severe hearing-loss. Truthfully, I think that’s a major part of why I’m a writer.

I function very well with it. Most people would never guess.

It takes so much energy for me to be fully engaged in what’s going on around me that at a young age, I adapted to the frustration by spacing out and dreaming instead.

I do much better with one-on-one conversations– but group situations like school, Mass, meetings and large gatherings can be very intimidating. There’s an influx of noise, and I have a hard time knowing from which direction. So to take breaks from interpreting all these incoming sounds, for short intervals I tune out the world, and focus on something easier– a book. Or I find solace by directing the conversation toward a blank paper- and channeling my thoughts that way.

Writing is how I hear myself think. I’m able to block out all distractions and completely focus– and that’s a huge relief. It’s also a harmless way to keep myself occupied without being disruptive to anyone. I often enjoy going to eat alone at restaurants, bringing a journal or a book. Servers like me because I don’t demand anything of them, and they don’t rush me. Everybody wins.

Some people do this with music– they’ve always got their headphones. They channel their feelings into an instrument.

I choose the alphabet over a musical scale. I wish I understood music– but it’s mathematical. I get frustrated easily. Maybe some day I’ll try and tackle it, but for now I like sticking with what I know.

I was a prolific note-taker in school. I learn by writing, and then re-reading what I’ve written. I also became the best note-writer of all time! Like any typical kid, my attention wandered and I instead wanted to chat with my friends. But for me it was easier if I wrote notes- and we built conversations that way. I wrote missives full of all kinds of details, folded into impossible shapes and contrived origami-like patterns that could never be restored once opened.

I would nudge my best friend and whisper, “Meet me at the pencil sharpener.”

We had nicknames, and stupid codes– because a gossipy girl in our class was notorious for breaking into people’s backpacks and cubbies to STEAL notes. Nobody trusted her, so she found her own ways to keep on top of gossip. Or she would “find” them on the floor. It was our way of encrypting our secrets, though it failed.

And of course! Notebooks. I still have some of them.

Oh yeah– back to my hearing-loss. I am a woman of tangents! Forgive me. Sometimes I forget and repeat myself.

I write because there’s no disputing words on paper– it’s like math. Absolute.

By re-reading what I wrote, I verify that’s what happened at that moment in time. Sometimes it helps me to avoid redundancy or making the same mistake twice. It helps me to keep track of things, and make sense of my life.

When having a conversation via text or on paper, no one can say, “I didn’t say that!” It’s right there. Words on paper are something I can trust. They may dispute the meaning if they don’t like my reaction, or they may have lied– but they are at least accountable for the words they chose. I can’t control the rest. I try to take people at their word, and if they’re not honest that’s their problem.

And not everyone trusts us with the real information first. You have to know the person to decide if they’re being honest. Some divulge more truths as they get to know us.

Everyone has defense mechanisms– we all have a chain-lock of some sort.

That doesn’t make us bad people. It just means we all grow up with different fears, and different ways of coping.

But half the time what I think I heard isn’t what was said. I have to spend a lot of time guessing, hoping that I’m right. Because if I asked for clarification every time I needed it, people get annoyed. So I learned to pay really close attention, and fill in the blanks most of the time by context clues. Most of the time it works like a charm. That way, most of the time no one even notices and it saves me a lot of time. I’ve also had a lot of speech therapy and lip-reading classes– so most people never know about my hearing-loss unless I tell them, or they see my hearing-aids. Right now, they’re broken and getting replaced– so I’m struggling to compensate. But I’ve assimilated well enough that most people never notice my “accent” unless they know someone who’s hearing-impaired, or they have studied speech pathology.

If anything, most people think I’m from another country or state, which is hilarious. I like to have fun with them a bit.

“Where are ya from?” they ask.

“Here,” I dead-pan. Or I might say, “Kansas.” (It’s true! But I’ve been living in Illinois for over 20 years.)

They usually look at me oddly, but accept that answer. Cracks me up!

I don’t want to be treated differently. I don’t want anyone pitying me. But I do like to educate people, and hope that others may relate and feel less ashamed of their own insecurities if I reveal a few of my own and admit I’m not perfect first. Maybe I can help them understand how to better interact with someone else facing the same challenges, with more patience.

I suppose I adapted that way because asking for things to be repeated in the past has gotten me a lot of negative reactions. People assume I’m dim-witted or not paying attention. When it’s vital or I feel comfortable enough, I DO ask for things to be repeated and clarified. The people who know and love me have learned to anticipate this and watch my reactions– they recognize that look of panic when I feel stumped. Often they will gently repeat what they said without my having to ask, which I deeply appreciate.

They know to make direct eye contact, enunciate, and not cover their mouths or speak to me from another room or when they are too far away. They don’t speak overly loud or slow– just normally. But they speak in a manner that’s considerate of my loss, and in return I pay as much attention as possible. I look right at them, which makes some people uncomfortable– they think I’m staring.

I’m not– I’m trying to read your lips, so I don’t have to ask questions. I like to be as independent as possible, and hate asking for help.

My trust is earned slowly– and that’s healthy. That’s being protective of yourself. That’s also a product of being an adult, and having made the mistake of opening the door wide without thinking–and getting a nasty surprise.

We learn to be guarded, to wait until we deem it safe.

When I’m ready, I open the door in my own time.

And sometimes, I even invite people in.

Hearing-Loss, Self-Esteem, and Humility

Years ago, I  was a barista. I worked 20 hours and I had health insurance.

I started out on the cash register, and that was a struggle.  I have a hearing-loss, and there were a lot of buttons and menus.  I had never worked in retail so it was my first time. It took me longer than most to learn it, but I worked really hard. Once I got it, I was great.

Customers would get impatient with me, and there were a lot of noises distracting me and people bustling around behind me. I would sometimes have to ask two or three times for them to repeat themselves, and they would sometimes yell at me or insult me and other times just stomp off and leave. I would be listening as hard as I could, paying full attention. But even with my hearing-aids in, I still have to struggle. It helps substantially, but I still miss out on things. A lot people think hearing-aids give you perfect hearing.

They don’t. They’re helpful, but not magic.

I usually worked closing shifts. When I took the job, I thought it would be perfect because then I could go out afterwards! I usually got off around 11 p.m. But I quickly learned that after a full day of physical work, the last thing I wanted to do was go out. I washed dishes, cleaned out drains, and usually mopped the lobby. Since I’m short, I was able to get out of washing the windows! At the end of my shift, I stank every day and my arms killed me from all the mopping.

But I slept great. After a 20 mile commute home, I would fall into bed and pass out.

And even better, I worked with hilarious people. We bantered and goofed around and our shifts flew by because of this! A lot of them were almost a decade younger than me, and thus immature. But still, we had a good time. One of my shift supervisors is still one my closest friends.

Then I moved up to making frapps, and finally “the bar.” That’s the espresso bar, which is the hardest and most fast-paced job. People are shouting orders at you, and you are expected to get their orders done impeccably within a couple of minutes. It’s a lot of pressure. But also a rush! If you don’t make it right, they will complain and you’ll have to do it again. Sometimes they’ll ask someone else do it instead.

It took awhile for me to hit my “magic shift,” when suddenly it all clicks and becomes routine.

But I found out from one my friends that most of the other workers were conspiring to set me up and get me fired, because I slowed them down too much as a team.

Hearing that, I worked harder– and soon hit my “magic shift.”

When I learned to finally keep up with the rest of the team job I earned their respect and saved my job. I left on good terms, with more than two weeks notice- to a better job. Full-time, with better insurance.

I’m very friendly and good at greeting people– and I got a lot compliments on that. I compliment people often– and because I’m sincere. Although I’ve noticed a lot of people get suspicious if I compliment them. A lot of people use that as a hustle tactic, but I sincerely just like to point out the best in people. I always have a smile for whoever needs one, especially if they’re scowling. I just have a sunny nature, and find joy in the simplest things. I don’t take things for granted.

In person I am quiet sometimes, lost in thought. My real thoughts come alive on the page.

That’s where my intelligence shines.

Every job I’ve worked has been a struggle, because it takes so much energy for me to listen and just understand what’s happening.  Sometimes I hear things wrong, misunderstand, and consequentially screw up. That’s always mortifying. It sucks when you think you’re doing the right thing and then get yelled at or reprimanded and find out you were completely wrong.

But my employers and co-workers know that I’m doing my best. And I learn from my mistakes, and use those as a springboard to thrive.

Being hearing-impaired means that you spend a lot of time correcting mistakes, asking for help and apologizing. It’s hard on your self-esteem when other people sail through tasks, simple tasks, which are hard for you.

Sometimes people think you’re lying, because in one instance you heard them, and another you didn’t. But it all depends on how close you are, how loud the rest of the room is, the pitch of your voice, and if you’re covering your mouth or not.

Due to those factors, it’s out of my control how much I pick up of what is being said. If it’s on a PA system? Forget it.

I’ve learned to assimilate well. I read lips, and I don’t tell most people about my hearing-loss. I don’t sign– I was mainstreamed, and I’m very thankful to my parents for that choice.

I am ethical, I take constructive-criticism well, and with patience I learn well and flourish in almost any task.

I am infinitely adaptable.

I don’t like to be pitied, and that’s why I usually don’t mention it. I just want the same opportunities as anyone else.

But I’m sharing this because a lot of people don’t understand hearing-loss, and I’m always very open about it. I welcome questions, and if people want to look at my hearing-aids, I don’t have a problem with that. I answer everything I’m able, and enjoy educating people who are sincerely interested in what’s it like to have this struggle. Most people are very compassionate about it, actually.

“This is Water,” by David Foster Wallace, describes having an attitude of compassion very well. Reading it changed me.

So next time someone is a bit slow on a cash register, or fumbles with change, or doesn’t hear you the first time, or the second– don’t assume they’re not paying attention.

They may be working as hard as they can. Just have a little patience.

Not a Quitter Anymore

My biggest regret is that I’ve defined myself by my flaws, and abandoned things I liked doing because it got hard or I failed.

I’ve quit a lot of things.

This stupid Pantene commercial made me cry, and realize that I’ve given myself the easy way out about a lot of things: my hearing, my math disability, or whatever is blocking me at the moment. Rather than persevere, I just quit.

I’ve let my hearing-loss get in my way– but this little girl didn’t. She inspires me.

I loved dance and had good rhythm, but was slow to learn choreography and couldn’t keep up with my class. I quit after second grade.

I began to learn piano in third grade, but was annoyed I couldn’t naturally play with both hands at once. And because of my severe hearing-loss, I had to work much harder to listen to my teacher, concentrate on my playing, and hear the chords. I quit.

I was a great swimmer and diver,  learning to swim when I was six and then taking swimming and diving lessons when my Dad got a membership to a great country club when we moved to Illinois in second grade. I was especially good at diving, and wasn’t afraid of the high dive.

But in fourth grade, I saw a boy I liked flip backwards off a diving board at a neighor’s  Fourth of July party. I was next behind him, and wanted to show off. I miscalculated, and wasn’t far out enough– instead I hit my head on the edge and got quite a nasty goose egg for a bit. i was fine, but traumatized. I was afraid to do any of the dives I had learned. I stopped going on the high dive. I quit.

I was great at gymnastics, built perfectly for it.  I’m petite, with that same square build. It makes me me aerodynamic and able to run fast and hard for a short distance to spring on the vault. My friends and I used to watch gymnastics on TV and practice routines on each other’s front lawns. We learned to do a lot of tumbling on our own. I started taking lessons, and began at level three for the floor and vault exercises.  I remember how sore I was after my classes, and how much I loved the fact that I be in perpetual motion with my entire body. I wasn’t chasing after a ball– I was DOING something. It was a terrific rush.

But I was only strong on the vault and floor, with no training at all on the balance beam or uneven bars. I got sick and missed three classes, and when I returned they were doing evaluations. I had weak arms, and still do. Rather than submit to start over and learn the basics on the uneven bars and balance beam, I quit. That’s one of my biggest regrets– who knows what kind of gymnast I could have been?

(Years later, I took a few private lessons, trying to learn to do a back hand-spring. My instructor was great, but I couldn’t afford to keep up the lessons. She told me I had a “powerful run,” and seemed like a natural.)

I attended cheerleading camps in junior high, and excelled at jumps, basket tosses,  and had a strong voice. But I never tried out at school, because none of the other girls in my grade thought it was cool in fifth or sixth grade. I think I started to try out in seventh grade, but felt sick the first day of try-outs and didn’t do too good. I didn’t come back for the second day. I had great tumbling skills, loved to jump around, and could yell loud.

In high school, I didn’t try out for cheerleading because I hadn’t done it in junior high.  Also, I thought the girls doing it were snots!

Freshman year of high school, a friend tricked me into joining cross-country. I was terrible. I got winded easily, couldn’t keep up with the others, and would be two blocks behind everyone else during practices when we ran through neighborhoods. My coach had me run four laps around or campus quad alone instead, because everyone was annoyed.  I would get lost at meets, or run out of breath and have to stop. I’d come in dead last if I finished at all. Once I had to be driven back to the finish line because I didn’t pay attention to the course tour and had a panic attack when I got lost.

At my first opportunity, I tried out for a play. It was “The Miracle Worker,” and I got cast to share the part of Helen Keller. I ratted up my hair, smudged dirt on my face, made my eyebrows straggly. I was short enough to look like a child– only 4’11,” and half-deaf myself. I won the part, sharing it with a senior. I would play the younger version of Helen. I was ecstatic, and quit cross-country.

THAT, I don’t regret. I loved being on stage, and HATED running. So I quit, and only ran first semester.

I love theatre but have difficulty with memorization– and it’s not my passion. I enjoy being in the ensemble, but don’t want the pressure of a lead role. Some day I may return to community theatre and dabble a bit, but right now my work schedule makes this impossible.

I still hate running. I don’t ever see myself being a “runner.” But it’s something I think could help me feel better, sleep better. I’m going to get out and start running a bit, and just see what happens.

But there are things I DO want to learn.

I want to save up and some day, I want to learn piano again. And learn to play with both hands.

I want to take voice lessons, and learn how to control my singing. I have a strong voice, but no idea what I’m singing or how to control it. I’d like to know what my actual “range” is– I know I’m an alto. I just imitate tones I hear, and would like to grow and learn to hold notes, project, and maybe stretch my range if possible.

I want to take a foreign language again– in college, I took Latin. But since I haven’t used it, it’s gone. Maybe I could take it again, or try something similar but more useful, like German. Something I could speak, and something I could actually hear and pronounce.

I want to learn how to do that damn back hand-spring! I will never have enough money or time to do all these– but I’ll spend my life trying.

I’m not going to be a quitter anymore. I want to finish some things I abandoned, and take on some new challenges.

The only thing I’ve consistently done throughout my life is write. And I even quit that for awhile, but now I’m taking it up again.

So many times, I’ve wanted to quit blogging. But I’ve kept this going a year and a half now. And I love it. It’s my freedom. My release.

Helen Keller has always been a personal hero of mine, since I identify with her severe hearing loss. And look at her– she couldn’t see, OR hear. And rather than give into a world of isolation and hateful silence, she blossomed and became an icon.

Helen Keller learned to read, speak out loud. Even write. She wrote books. She delivered speeches, and got over her insecurities about her voice– I’m sure she had them.

I almost wanted to quit my column because I was getting so burned out on it. I’m not going to let that happen.

I’ll work harder, write smarter.

I’m going to be someone who overcomes.