Love and Hate

 

If You Really Care Please #BeKind!

A little over a year ago I shared with the world a new chapter in my life that involved the addition of some labels to my identity. I have been blessed to receive a lot of support from people all over the world as I learn how to accept and work with these challenges. Each episode of depression has been confronted not only with my own efforts to crawl out of the darkness but the words of so many of you working hard to lift me up. 

There have been a couple of people who aren't comfortable with my public sharing of the challenges I'm facing. I've been asked (TOLD) more than once to keep this part of my story quiet. I have suffered quietly with these challenges all of my life because the challenges did not have a name. Instead, I thought I was a bad person, a failure in the eyes of my father and many others. 

What I'm about to share is painful. This is going to be a lot of reading. If you're going to read this, please read it all the way to the end. I need to ask a favor of all of you. I need people to stand with me on this. I need them to stand for what I believe in and what I'm about.

February 24, 2022, Mark and I learned of the death of a good family friend. He died with a cigarette in his hand. I'm heartbroken he passed away, and I'm angry that he couldn't quit smoking. I'm angry that misinformation kept him from trying things that might have helped him quit smoking. I haven't developed an ability to handle grief or anger very well. It appears that each time I'm confronted with grief I go through another episode of depression. It hit me quickly this time.

That depression increased when a couple of days later, I got this message:

“Skip you’re crossing the line and need to step back. You have no idea what you’re saying or doing. You should stop posting publicly about all your mental problems. 

Autistic people should take special classes so they understand how to act and what to say. People you know online aren’t your friends they are acquaintances. You look like an idiot acting like people on social media are your best friends. 

You send too many messages and none of them are important. You’re being an obnoxious pest and I’m not the only one who says this. Stop. Just stop. It’s rude and selfish to take up my time for stupid shit.

Why do you keep sending me ******* flavor studies? Big tobacco and juul are lobbying to destroy us. Flavors aren’t the issue anymore. Either fight for synthetic or get the **** out of our way. And stop with all the people should get along and talk to each other. Our ******* advocacy groups can’t work together and you expect us to go to bed with the enemy? There’s something wrong with you.”

Those words hurt. Who they came from hurt even more. I have been deep into another round of depression and I have been stuck here. The thoughts and emotions were like a tornado in my head and the tears flowed freely on and off every day for a couple of weeks. I didn't know what to do. I was barely functioning, had trouble sleeping, and was plagued with nightmares when I did sleep. I didn't know what it was that I needed to slow the thoughts so I could deal with them.

What I needed was to be heard. I was given that gift and it helped. That night, I fell asleep and slept peacefully for hours. I had a plan, a direction to go. The tornado was gone. I decided to respond to the person and wrote them a letter.

This is what it said:

"Thank you for reaching out to express your concerns.

I’m sorry that the messages upset you. I didn’t realize that you had discontinued gathering evidence on the value of flavors. I think the best remedy to this situation and the easiest way to respect your time would be to stop messaging as you suggested. If you have a need in the future for more studies, info, or just to chat, please feel free to reach out to me.

We are 2 very passionate people when it comes to THR. I think we both feel threatened over the recent developments pertaining to the FDA, PMTAs, MDOs, and now synthetic nicotine. Add in all the state and local battles over flavors and taxes and it seems like all we do anymore is fight for the industry to survive. I find myself dealing with a lot of fear, frustration, and anger. I know that you’re no stranger to those feelings. It sucks to be feeling this way all the time. Thank you for fighting so hard for the industry. I hold on to hope that your business and all the others survive.

I share your concern over the lobbying by those we’d expect to be our allies. I struggle with this and I know that many of you are angry with me over my support of “gas station products”. I don’t like that some THR companies are pushing for legislation that helps them while hurting all us little guys. I don’t like it one bit. It is hard for me to comprehend that business is business and in that landscape, profits come before people (consumers and competitors). I wonder if some of the big guys ever feel the same way when some of us push for flavors (or all vapor products) to be sold only in age-restricted locations, taking the c-stores completely out of the picture? The most painful lesson I’ve learned from the combo of business and politics is that the fight to survive can mean casualties in our own community. It’s brutal and I hate it.

Both of us used to smoke. Both of us are tired of being stigmatized because of smoking and now vaping. Both of us are frustrated that no one is listening to those of us from the smoking community. We’ve both encouraged people to get involved and to tell their story, that lawmakers need to see what a difference it makes for us, our loved ones, and our kids when we quit smoking. Most of society doesn’t smoke and many of them never have. It’s hard to comprehend that some of the people making decisions about our lives don’t even know anyone who smokes. 

It took the encouragement of many of you to help me become brave enough to go testify in front of a city council and then my state lawmakers. Those early testimonies were a quick version of “just the facts”, citing info from studies. It was where I was most comfortable. Under the mentorship of you and others, you helped me find the words to talk about smoking, the death of my Mom, and my son’s heart attack. It’s incredible to testify and have a lawmaker wipe a tear from their eyes as the words people like you encouraged me to use took the glaze out of their eyes and touched their hearts. 

I never would have gotten so involved in advocacy without the encouragement of you and some of our fellow biz owners and consumers. I have always admired and appreciated your fighting spirit and the fact that you never give up. You have inspired me to do the same. As you know, in 2020 a new chapter was added to my story and my love affair with nicotine. I find myself with a new struggle. The stigmatization over having smoked and vaped is still here, we haven’t fixed that. And as you know, the accusations of being big tobacco shills doesn’t seem to end, either. Your messages made me face the painful reality that I now deal with another stigma. One that is given to me by people who don’t understand neurodiversity.

There are 3 of you who have asked me to silence my voice, to hide my truth, my story. I have spent the last 2 weeks torn over this and that is why it has taken me so long to respond to you. It is important to both of us to continue to try to save the lives of people who smoke. So many of those people belong to my neurodiversity family. They are my people, just like you are my people. We all have smoking as our common denominator. And yet, we’re each different in our own unique ways. If you want to learn more about autism and mental health, I’m trying very hard to be an open book and I am willing to do my best to try to answer your questions and address your concerns. 

It took me my whole life to find my voice. To stand up for what is right. I wouldn’t have gotten here without you and the others. I’m deeply hurt by the stigmatizing language in your message and the request to be quiet about the truth that I and many others face. Every day I have to look in the mirror and make sure that I’m doing things that make me proud of the person looking back. The first time I had to speak at a meeting, I was so afraid that I stood outside in tears, frozen in fear and unable to go in. It was YOU who gave me a hug and told me my voice has value. I probably would have been much less hurt if your messages had come from someone else. Your words took my value away from me. What can I do to help you see that my voice and my truth and my story still have value in our efforts to not only save vaping but to save lives?

I share your concerns about the division among our advocacy groups and advocates. We’ve never been able to get everyone on the same page. I don’t have an issue with multiple strategies, none of us know which one will work. I do object strongly to the various groups publicly attacking each other on social media. I think we can all do better at being supportive of each other. My Tweets to "Change The Conversation" applies to everyone - those on both sides of the THR divide, but not to just the other side, but to each other, meaning people on the same side.  

Support is important. How many times have we felt burnt out and defeated and one of our own comes along to lift us back up? It’s OK to disagree, it’s how we act when we disagree that matters. I appreciate you keeping your concerns about me private and not blasting them all over social media. I feel the need to give people like me - those with invisible disabilities - a voice. I feel with the prevalence of smoking among this population, we need to be seen and heard. I think we deserve a seat at the table. I hope you can understand that and that I’ll be able to count on your support in the future.

~Skip"

Last night I finally got brave enough to send it. I tried to be kind and gracious. I was hopeful that my words would help foster an understanding as to why neurodivergent people have voices that are just as important as everyone else's. Unfortunately, my efforts failed and made the person even angrier. They called me in the wee hours of the morning. It wasn't pleasant. I asked them to stop yelling and to stop calling me names. They continued. I did something I don't usually do, I hung up on them. This made them even angrier and they sent me a Facebook message. It was pretty ugly. A little bit ago I blocked them. Also something I try hard not to do - block or get blocked. Once that door is closed, there's no future opportunity for any productive communication.

Exhausted, hurt, and frustrated I laid down and had a good cry. I must have cried myself to sleep. Before today, outside of the 2 of us mentioned in the messages above, only 1 person knows the details of what has been going on, the person who patiently listened as I tearfully talked about this experience. This whole exchange has been private, and I prefer it that way.

Unfortunately, a pile of used tissues beside me and the hurtful words on my computer screen was all that was needed for someone to add 1+1=too much pain. It's human nature to come to the defense of those we care about and that's what happened next. It was put on Twitter. And now, here is where a bunch of you join in on this story. You made me smile rallying around me, wanting to have words with the person who caused me pain. Some of you feel motivated to go beyond words. Thank you to all of you for wanting to come to my defense. I feel stronger standing with you.

One of you knows what's going to come next from me. Thanks, Lindsey, you nailed what I need from everyone.

"Thinking of you Skip. I'm so sorry someone felt the need to hurt you...You've got an army ready to take them on, but knowing you, you'd like us to practice kindness. "

 

Go back to the message from the person I'm writing about. Look past the stigma of their words. What do you see? I see anger. Anger that had no place to go and ended up directed at me. Anger is a secondary emotion. It's born from a primary emotion. When I step outside of the hurt caused by that person's words, I see fear. When we feel fear, survival instincts kick in. What is that person afraid of? That is easy to answer! Losing the technology that helped them quit smoking and keeps them from returning to smoking. Losing their business and their means to support their family. If they lose their business they lose their means of helping members of their community quit smoking. Loss of their business means they have to let down their employees, some of who have worked for them for years.

I see someone who has fought long and hard for what they believe in. I see the fear that my voice may hurt instead of helping that cause. I see someone who is hurting as bad as I am. The last thing I want to see is a bunch of us add to their anguish. Thank you to all of you who want to rally to my defense. I've done what I need to do. I tried to show them why my perspective is different than theirs. When that effort failed, I did what I need to do to protect my mental health and have cut off ties with this person. Now, I have 1 thing left to do before I can walk away from this situation. And that's to ask a favor of all of you...

If You Really Care Please #BeKind!

If you believe in prayer, please pray for this person.

If you believe in healing energy, send some their way.

If you believe in hope, I think that person could use some.

If you believe in love, that is what I need you to radiate right now.

If you believe in the power of positive thinking, send some in the direction of this person.

By doing these things you will be demonstrating your love and support for me. Because you will be standing up for what I believe in, for what's important to me. My goal is to someday die a success. To me, success means that when my time is up, I will be known for being a good person, for making the world a better place, and for having a positive impact on others. I can't do that without you. Please don't spend any more time feeling anger towards this person. Love always has been and always will be stronger than hate.

A really good book to read that has had a positive influence on me as I've dealt with this situation is "See No Stranger" by Valarie Kaur. Thanks, Joe, for the recommendation. Her philosophy is something I very much agree with. As we all struggle with how stressful and challenging life is, I hope some of you will read this book.

Quality of life is vastly improved when we put ourselves in a peaceful place filled with love for others.

Sending hugs,

~ Skip