Sometimes the road can get a bit rough

 

A few days ago, I had a really bad day. I don't know if what I was going through has a name, so I'm calling it a brain storm. I described it to someone that it was like a machine gun in my head. The bullets were bad thoughts and emotions. FEAR, ANGER, SADNESS. It was like someone was pulling the trigger and wouldn't let go. Bam, Bam, Bam, Bam, it was an endless assault. When my head got too full it started coming out of my eyes. I couldn't stop crying. I shed tears for hours. I'd sort of calm and then it would start all over again. I was a hot mess. 

I felt out of control. I went through episodes of my heart pounding, my hands shaking, and breaking out in a sweat. I'd start feeling short of breath and dizzy. I tried to relax and it would get a little better and then BOOM another wave of it came over me. This went on for several hours. I felt very needy. I was alone and didn't want to be.

I've never experienced this before and I hope I never do again. It was unpleasant and overwhelming. I'm starting to think this might have been stress related. The day before had been a long, hard day, because my husband had issues with his COPD. He struggled to breathe all day. I left work and went home to be with him because he started to panic and it made his breathing worse. I spent the day trying not to look or act worried so he'd relax. It isn't fun to watch someone you love struggle to breathe! While this was going on, my adult son (who has an "unspecified social disorder" which is now believed to be autism) had a meltdown. His girlfriend had never experienced one of those and so, I was on the phone helping them through that. My son, who's already had 2 heart attacks started having chest pains in the middle of everything going on...

The good news is my son wasn't having a heart attack, his meltdown ended, and by evening my husband was breathing better. We had survived another day of health issues, many smoking related. We're a family of people who used to smoke. 

The health issues of my loved ones is nothing new. We've dealt with them for years. I don't know if them happening on the same day was the trigger for my bad day, but I'm starting to think it was. The only thing that was different that day is that once I went home in the morning, I didn't vape again until I left home the next day, the day I woke up with the storm already raging in my head. 

As I tried to work through my bad day, I vaped constantly. I found it helpful to try to verbalize to a couple of people that I wasn't OK (Thanks Charles and Cami!) which was like opening a faucet and just letting the ick pour out. Later that day a switch flipped and suddenly all the weird thoughts and feeling were gone. The storm was over.

Maybe the depression I've battled this past year made me more prone to the brain storm. Maybe I self medicate with nicotine more than I thought. Maybe my autism put me in some kind of weird sensory overload. I don't know. What ever was going on that day, I'm grateful I've reached a point in my life where I finally feel safe to tell people I'm not OK. I hope that part of this sinks in for you, it's OK to tell someone you're not OK. Don't be afraid.

Those of you who are accepting and safe to talk to are a life line to people like me. Thank-you for being there.

Photo from: Celebrating neurodiversity

P.S. Many years ago, I was really good at being young and stupid. I liked to party and I did too much of it. How I came out of my youth and escaped becoming addicted to alcohol or drugs is beyond me. One day, I just decided not to do those things and walked away from them. Didn't touch either for over 20 years. Now, I might drink 1 or 2 beers a year, and that's enough for me. 

Smoking cigarettes are a different story. It was a struggle for many years to stop smoking. I tried every method known to man. I became a professional at failing to quit smoking. I finally quit trying to quit. When I started vaping in 2014 it was because I could do it in places that I couldn't smoke. 4 months later, I realized I had accidently quit smoking. I remain smoke free to this day.

But, I miss smoking and there are still times in my life where I want to smoke. Stressful and emotional times are the worst for having an urge to smoke. It amazes me that when I had that really bad day, it never once crossed my mind to have a cigarette! 6 years smoke free, and the first time I had a bad day and didn't want a smoke! 

Many think that people who vape to quit smoking should also strive to quit vaping. For people who want to do that, I fully support that goal. I think people like me have a need for the nicotine, both in their brains and to prevent relapse to smoking. I wish more people would understand and support that. I function better with nicotine in my system. I also function better with coffee in my system. 

Some people have a glass of wine or a beer everyday, and society doesn't have an issue with people using that drug of choice. I hope someday, society will also accept the use of safer forms of nicotine. People like me could use the world judging us on one less thing. 

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.