Showing posts with label Stigma. Show all posts
Showing posts with label Stigma. Show all posts

Sunday, June 13, 2021

Dear Tobacco Control

 

I've been called a smoker.

I've been told I stink.

I've been shamed for failing to quit.

I've been looked down on for not only failing to quit, but for being a repeat failure. 

I've been judged for polluting your air and turning your walls yellow.

I've been accused of being weak and lazy. 

I've been hated and found to be disgusting.

I've been treated like I'm not as good as you.

I've been told I have to quit smoking.

I've been told how to quit smoking.

I've been led to believe I'll never be good enough.

I've been treated like I'm damaged and broken until I ended up in believing that was my identity, and my name was smoker.

When I finally quit smoking, but didn't do it the way you wanted me to, you continued to judge me. You told me I didn't really quit. You started calling me an addict. I was still scum to you.

When I volunteered (that means I didn't get paid) to help a company owned by someone who used to smoke, develop products they hoped would help other people quit smoking you labeled us as evil. You accused us of marketing to kids because the products were flavored. You never asked why we created those products. You call us Big Tobacco when we have nothing to do with those large companies.

One of my local vape shops was in the lower income part of town. They kept their prices low to help the disadvantaged have an option for something safer than smoking. I know you know that lower income people smoke at a higher rate than upper income people, but you ignore that fact and say the prices are low so kids can afford them. In your eyes, when I took over that shop I was something even dirtier than smokers, I was a vape shop owner. It doesn't matter that the previous owner or I have never failed a compliance check, you take a joyous pleasure in accusing us of being part of the supply chain shoving JUUL down the throats of the youth of America. Funny thing is, we've never sold JUUL products. You never asked us why we owned a vape shop. You never asked what we sell or to whom.

You were the judge and jury and you passed a sentence without ever hearing our testimony.

Today, I'm sharing my testimony on how I ended up smoking and how I feel about my experiences...

I come from a long line of people who smoked. They weren't smokers, they were people. Most of them were really good people. The exception to that rule was my Dad. He had an anger in him that burned to the depths of his soul. He had a need to be in control and for everything around him to be perfect. Problem is, life isn't perfect.

Dad didn't want kids. When my Mom became pregnant with me, he wasn't thrilled. He isolated her and kept her from medical treatment. She got very ill. A neighbor found Mom collapsed in the yard and got her help. Once it became apparent that even ill, Mom was going to remain pregnant, Dad decided that was OK, as long as it was a boy. I was born with the wrong body parts and I paid for it my whole childhood.

Most of my childhood memories of my Dad revolve around punishment. To this day, I struggle to feel I'm good enough, because I was never considered good enough when I was little. My bedroom had to be spotless. After cleaning my room, my Dad would inspect it. If anything was wrong, I paid for it. Something out of place or a gum wrapper that missed the garbage warranted a beating on a bare behind with a leather belt, along with being grounded to my room for 2 weeks. I could only come out to eat, use the bathroom, or go to school. I couldn't talk out my window to the neighbor kids, I couldn't watch TV, and I couldn't use the phone. If I objected to the punishment or took too long to go to the bathroom and return to my room, I'd get another beating and sometimes got locked in my closet for a couple of hours to help me learn to be where I'm supposed to be. 

I was shy as a kid and didn't like to talk to people I didn't know. I could talk to people when I had something to talk about, but found small talk to feel awkward. Dad took this behavior as being rude and if it embarrassed him, I'd get another beating. Sometimes around people I knew, I'd get excited and talk too much. Thoughts would race so fast and fly out my mouth. That was just as bad as not talking at all and also worthy of a beating. It was important to my Dad that I learn to speak well, in a proper manner at a proper time. It became even more important to me.

I didn't like certain foods as a kid. Macaroni and cheese, liver and onions, and Brussel sprouts were the worst. I didn't like the taste, smell, or texture of these foods. My Dad believed you eat what's on your plate and you better be grateful for it. I remember trying to eat these foods and gagging on them. I'd have to sit at the table for an hour or two after everyone was done eating until I ate that cold, nasty food. If I didn't manage to eat it, I'd get it with the belt again and my plate went in the fridge and would be served cold to me the next meal. This would be repeated until I ate it.

I couldn't stand sox and shoes. Once I took them off in church and somebody laughed. My Dad was so mad at me, he didn't even wait until we got home. I got my beating in the back seat of the Chevy in the church parking lot. He didn't like me crying and on the way home told me to shut up or he'd pull over and give me another licking. I learned to cry without making a sound. I'm still good at that skill.

Sometimes I just had to move. I liked to rock. I'd rock my body while sitting in a chair. Sometimes, my hands would just randomly flop or flap. Sometimes I talked too much with my hands. The rocking and flapping my Dad found socially unacceptable and irritating. I got warned to not do that and if I did, you know by now what happened next. I wonder how many belts he wore out on my behind? Due to the talking with my hands and too many glasses of milk going flying at the dinner table, I was banned from talking during meals and wasn't allowed a drink until we were done eating. Sometimes my Dad would make me sit on my hands for hours to teach me that hands are not for flopping, flapping, and waving about.

There are many more examples I could give, but I think that's enough personal details to paint the picture of what life was like for the unwanted daughter of my dad. Now imagine that was you. Do you think it might have had an effect on your mental health?

My Grandpa C was the exact opposite of my Dad. I was his favorite of all the grands and he didn't care who knew it. His eyes glowed every time he looked at me. The best days of my childhood is when my brother and I went to spend a couple of weeks at the farm with my Grandparents. No Dad meant no beatings. I rode on the tractor with my Grandpa and I helped in the barn. I spent time with the animals. We did lots of fishing and hunting together. In my eyes, he was one of the most amazing people on earth.

My Grandpa smoked heavily. The first cigarette I ever smoked was taken from my Grandpa's pack of smokes. I was 10 and smoked it behind the barn with a couple of kids from the neighboring farm. I know we coughed, but I don't remember that 1st cigarette being awful. I remember it making me feel closer to my Grandpa. After being so imperfect in Dad's eyes, it felt good to be like someone who was perfect in my eyes and smoking like Grandpa smoked made me feel like I was more like him.

I became a person who smokes with that very first cigarette. I took many cigarettes from my Grandparents, parents, aunts, and uncles. Back then, if the store clerks knew your parents and knew you, you could ride your bike to the store and pick up smokes for them. At 10, I was already babysitting the neighbor kids and had money, so I'd go to the store and ask for a pack for my Mom or Dad and buy my own smokes.

There was something very strange about smoking. I felt better when I smoked. It brought me a calmness, a slowing of my racing mind. I liked how I felt after having a cigarette.

The trauma I experienced as a child continued on into adult hood. I was raped when I was 19. I ended up in an abusive relationship and had to flee my home and move to another town in 1980. My boyfriend beat me in the stomach with a dining room chair and I miscarried. I was 5 months pregnant. I went to my Grandparents, who had retired to the family cabin. I remained hidden there for several months, not telling any of my friends back home where I went or why. I had to start my life over. I never moved back to the land of so many kinds of abuse, and feel safer up here living my rural life in the woods. Bears and coyotes are nothing compared to the danger of angry men.

I smoked from 1969 until 2015. Over the years, I tried to quit smoking several times. I joke that I became a professional at failing to quit smoking. The joking was to hide the embarrassment over failing to quit, over not being perfect, of not being good enough to achieve this one small task.

In 2014 I tried vapor products to use when I couldn't smoke. Four months later, in 2015, I suddenly realized I had quit smoking. I haven't smoked since. I continue to vape and there are some of you out there who continue to judge me for my intake of nicotine.

I tried to stop using nicotine in 2020. That was probably not a good idea in the midst of isolation due to COVID. I ended up depressed and I ended up needing help. That help led to a diagnosis of Late Life Depression, ADD/ADHD and Autism. My therapist wanted me to see someone about medications. I didn't like some of the options. I have a tendency to be very sensitive to medications and often find side effects worse than what the meds are supposed to treat. I talked to my therapist about nicotine. She wasn't too excited about that option and wanted me to stop vaping because she felt it would be making my problems worse, not helping me.

I sent her the links to several studies and via my computer, we watched the film "You Don't Know Nicotine" together. She was shocked. She agrees that I am probably one of the people who are helped on a therapeutic level with nicotine. She now supports my using nicotine for my mental health, as long as I use a delivery method that doesn't involve smoking tobacco.

I'm telling the world much more than I wanted them to know, but I think that people in tobacco control need to stop and think about what they're doing. Stop calling people like me "smokers". We are people. We have feelings, hopes, and dreams just like you do. Stop calling us "addicts". Even those of us who are dependent on nicotine don't deserve your stigmatization. We deserve your compassion.

If you really care about us, and you want to end the death and disease from smoking, you need to stop talking at us. You need to listen to us. Ask some questions, show you care. I don't need anyone else judging me. My Dad did enough of that and now that he's not in my life, I do it daily to myself. Help people like me to finally feel like we're good enough.

How do you do that? Do something about what causes people to smoke in the first place. Do something about poverty, child abuse, sexual abuse, verbal abuse. Do something about the poor mental health services in this country. Do something about discrimination and stigmatization. Do something about our schools with low academic achievement and the bigger populations of high risk youth. Volunteer with kids, be a mentor and a positive influence in their lives.

You can waste your time fighting for taxes, bans and restrictions all you want. There may be less people who smoke from those efforts, but the problem isn't going to go away until we kill the root. The root is the social ills that makes a person seek something to make them feel better, who feel their only option is to smoke. The world is full of people not realizing they are self medicating.

The next time you meet someone who smokes, remember, they are a person. Show you care, ask to hear their story, ask what you can do to help. Support them when they are ready to quit, and please, no judgements on how they quit. How doesn't matter, success is what will save their life. You don't need to fear the nicotine. Nicotine helps people like me. All we need to fear is the smoke.

I am tired of feeling like I'm not good enough. I'm tired of feeling like I'm broken or damaged. I'm tired of having to fight to be able to use something that's safer than smoking and keeps me from going back to smoking. I'm tired of being judged. 

I'm ready to be told I'm a welcomed member of society. 

I'm ready to feel accepted and that I belong.

I'm ready to hear I'm good enough. 

I'm trying to believe I'm not worthless and to give myself credit for being a survivor.

I'm ready to meet other people who smoke on their turf and help them quit on their terms. 

Are you ready to go on this journey with me?

We are people. We don't need to be controlled. There's something wrong with the whole effort when it's called "tobacco control". We have a voice, give us your ear and listen. Work with us. We could save so many lives if we'd just give people a better life, a promising future, options and a voice. Let's close the rule books and the play books. Let's open our minds and hearts. It's time to roll up our sleeves and do great things together. It's time to stop the stigma and end the war between you and people who smoke or used to smoke.

Sincerely,

A seeker of reason, compassion, and co-operation.


Friday, February 12, 2021

Labels

Labels, Labels, and More Labels

Today I woke with my brain full of words. Thoughts were flowing at a flood stage. I think I’ll need to open a gate or 2 and let some of them out if I have any hope of accomplishing what I’d like to get done today.

Today, I'm pushing myself past my comfort zone. I'm pretty nervous. I am afraid of being judged or being looked at differently. But I'm going to take the risk and do this anyway because the world is hurting and part of that hurt is because we see too many negative, stigmatizing labels and we forget to see that we're people, not labels. This is a practice what I preach moment... so I'm taking a deep breath and here I go!

Life is stuffed full of labels. Much of my life has been spent advocating for the labeled. I hate labels. I’ve always looked at them from the point of how they stigmatize people. How they erase the person and slap a barrier up that blocks the world from seeing the amazing person behind that label. I've only thought of labels as a negative thing and didn't give a thought that we can have positive labels.


I am often good at spotting what a person’s label might be and trying to adapt how I do things to assist that person with the tools they need to live their life as well as they can. Many times I have shocked parents with the suggestion to have their child evaluated for certain things and when they did, they found my suspicions were true (most often autism). I always thought I was able to identify these challenges that children might be facing because I've been around people with those challenges and have learned the "warning signs". I never gave thought it might be more intuitive than that.


Before I move forward to the point about labels, I have to step back and tell you the story behind this story...


I’m someone who is usually stuffed full of hope. The past couple of years has found that hope slipping away. I landed in a very dark place. It’s possible that COVID accelerated the process. I like people, so all this distancing stuff isolates me. I’m a toucher and a hugger. That all stopped with COVID. 


The problem was, I was working so hard to be a beacon of light for others that I didn’t see the darkness that was seeking to take my soul from me. Last summer, an amazing group of people made the trip to my neighborhood to show me the results of a project they had worked on for a couple of years. It turned into an amazing day! 


It was a day filled with hugs, hugs, and more hugs. OMG, I was starving for hugs! We talked, laughed, cried, and ate good food. It was super hot out, the bugs were everywhere, and it tried to rain on us a few times. It couldn’t put an end to our day, a day of sharing. At sunset, we settled down to a drive-in-style movie we watched on a giant inflatable screen.

By the end of the film, my eyes became their own river and the tears flowed. I was so moved! The film was awesome. The message was liberating. The honesty was overwhelming. I knew I’d have to watch that movie a couple of more times to wrap my head around all that was in it.

But, a strange thing happened. I suddenly realized that I had no sense of my own value to the world. What made me aware of that? The credits at the end of the film. There is a list of “Thank-yous” and there it was… MY NAME! In print, for the world to see, someone valued what I had given them enough to put it up on the big screen, to be seen forever. Discovering you have value is a life-changing experience.


"Valued" would later become a label for me.


A repeat viewing of the film would give even more meaning to my story when I noticed my Mom’s name in the “In Memory” section in the credits of the film. To see her battles against her labels honored in such a meaningful way, giving further value to my need to help make the world a better place.


It was bittersweet to have to say goodbye to my friends, as they headed out to continue their journey to do their part to make the world a better place. I enjoyed a bit of self-pity, feeling sad knowing they live far away, and it could be a long time before we all see each other again. That stage of self-pity made me realize that a cloud of darkness had surrounded my heart. 


OK, back to the main topic: Labels...


It was time to talk to a professional. And then another. Finally, #3 was the perfect match for me. My involvement with this person has been liberating and I look forward to our sessions. Well, most of the time. Along with talking and working through the feelings and peeling away the darkness comes testing.

And then it was here. The full report. Black and white. The handing out of the labels I didn’t know I had. UGH! It’s like going through a grieving process! Denial, anger, and finally acceptance. I had labels. Ones I never saw in myself, even though I can see them in others.

It took my breath away. I didn’t tell a soul. 


A few days ago, I got brave enough to tell Matthew M. A couple of days after that, I told Aaron B. Why them? Because they are brave, accepting, and giving. Both of them get up every day and fight to make the world better. No matter what’s going on in their minds or bodies, they are warriors of goodness. They don’t live their lives by any negative labels, they manage their time and their energy to get done what they can get done every day.

Depression, ADD (the heart of my staying on-track issues, now called ADHD), and HFA (High Functioning Autism it used to be called Asperger's - the beginnings of my fitting in issues). The last one has been the hardest to accept. All of a sudden, the queen of label haters could see nothing but her new labels. (Update: Months later PTSD was added to the list)

And then came the revelation that I’m a river. There are many stones sticking out of my river and each one affects the flow of who I am. Sure, there’s a stone that’s Depression and another that’s ADD (well, ADD is like having a really big stone), and the stone that’s Autism's. It took me a few days to realize that my river also has many beautiful stones rising to glisten in the sunlight.


Finally seeing the river made me realize we all have labels. Many of them we are born with. They are a part of what makes us uniquely our own being, with no carbon copy anywhere. Each label is not WHO we are, they're just a stone that lays the foundation of the complete person.

So, I will add these new labels to the many labels I already have and never thought of as a label. Some of our labels are not a challenge, some are a gift. I am not only ADHD, Autism, PTSD, and Depression, I am kind, giving, big-hearted, funny, optimistic, enthusiastic, inquisitive, valued, loving, caring, strong, hopeful, fiercely loyal, a fighter for what is right, and of late - brave. I’m going to choose to move forward and not live by the "negative" labels. I’ll be aware of what they are and start using tools that will make the labels that cause challenges be less challenging, but I’m not going to focus on them.

I am me, I’ve always been me. I am what I was created to be. My identity comes from my heart and soul, not a collection of words on a piece of paper. Labels be damned, I am ready to greet another day.