Sometimes I wonder about whether I should talk about the fact that I have difficulty with some situations. There have definitely been some negative moments arising from talking about my issues. There have also been some very amazing growth experiences.
I just spent four days in the hospital while the doctors tried to figure out and understand why my heart has been acting this way. The paramedic performed a cardioversion in the ambulance, whether it really scrambled things up in my brain for a little while or not I was having trouble getting my thoughts to stay clear long enough to use my skills for coping with panic. It was a struggle to find a calm place. I tried meditation, guided and meta. I also tried to distract myself with other things. But it did not work. Nothing seemed to work.
During this time I had to have a stress test which also involved a CAT scan. I am very claustrophobic. The thought of going into the donut shaped machine was causing me no end of terror. I told the technician and the doctor that were working that day about some of my issues and how it was such a struggle for me to reset my panic into a calm even at the best of times since arriving at the hospital. These amazing people worked with me and together we had a rock and roll sing along while I went through the CAT scan process. They never left me until I had to actually go into the donut and even then they kept talking to me. They helped me to feel safe at a time when I had nothing to cling to ground me in my panic.
The night before my brain cleared up enough for me to get my skills to kick in I had a very bad anxiety attack. This time I took anti-anxiety medication. While I was waiting for it to take hold and help calm me so that I could sleep the nurse sat and held my hand. She talked with me about her own fears and struggles with an encounter with a CAT scan. She talked about the things that sometimes made her uneasy. By doing so she helped to bring things back into the world of normalcy.
I am home now. I try very hard to decided whether to tell people about my struggles or to keep quiet. When I do talk about them I find that I am able to get the level of assistance I need. I don’t actually need much assistance. But sometimes, like in the hospital, it helped the doctors to understand and gauge what was happening with my heart. It also helped two very wonderful people to rise to the challenge of how to help me feel safe enough to go through with a necessary test.
It comes down to where the individual feels about whether to share their experiences. Sometimes I need extra help to get through things. And if I say who I am and what I have endured, it gives people a chance to help me. Something they not be able to do without that knowledge. It is a very individual decision.
Now that I have finished with school it is time to figure out how I will pay back my student loans. I have been offered a job where I have been doing my internship. However, I am uncertain as to whether this will be a good fit. I have spent the last 11 1/2 months working somewhere while trying very hard to work within my limitations and not look like i have limitations. This has involved hiding in the bathroom and doing deep intentional breathing and simply smiling through the day regardless. It also involves trying to come down from a days worth of anxiety attacks that I have hidden deep down.
I finally lost it a few weeks ago and made some of my unhappiness known. There had been several ongoing things that simply made me feel not very valued. And they had never been addressed regardless of my hints. Apparently I needed to have a meltdown and spend my lunch hour crying in my car for anything to happen. And now with just 3 weeks of my internship left things are finally being addressed.
As I listened to people’s apologies I tried to follow my wise sister’s advice and look for sincerity. There was sincerity with many of those that have tried to make things right. I have yet to meet with one of those people who have inadvertently made it a hard internship. But I don’t think there will be a problem. They really want me to work there.
The real problem is that I have struggled for nearly a year and it gets harder and harder to get out of bed and go to the internship site and I am not sure this is where I can work. It is not because, or at least not only because, of the difficult time I have had. I have made it through because I have seen an end. There is a definitive time when this internship will end. I do not know if I can work somewhere full time where I cannot shave the corners to make my oddly shaped peg fit.
Making things fit my needs so that I can function in the world is something that I have become very good at. I have a safety list for things that I need to do that I struggle with. And protocols that make it possible for me to feel safe. Since feeling safe is something I did not have until as an adult I found ways to make it happen I am very aware of when I do not feel safe. For example: My tire went flat. I changed it and we got it fixed. However now I feel unsafe driving. I check my tires every time I get in the car or get out. At some point I will regain that safe feeling. It takes time.
Generally I learn from things that happen. I overreact to things and I see by the expression of those around me or from my own processing that what I did was an overreaction. I then learn how to react appropriately. It is always a learning experience. New experiences throw me for a loop. I know that this is normal. But I do not think it is normal to break out in a rash and not breathe as well as having your ulcer flair up when you have to fill out new forms. Once I do it however I know how to do it and the reaction is not the same.
What I am faced with now is how do I get my needs met, shave the hole to fit my peg and fit the needs of an employer? I am still looking for opportunities and also looking for ways to create opportunities. I just hope that through all this I can find a way to not hide my limitations but to make my experience something of value. Because I know that I have a lot to offer that is of value. I simply need to find a way to make a square peg fit in a round hole.
I was going to write about what I would like people to know and understand about having PTSD. I deleted the whole thing. It felt like a rant and not something helpful at all. Although sometimes rants are helpful. But I would like to share instead all the positive things I feel that I have because or in spite of having PTSD.
And unsure of how to do that I decided to write a poem. And here it is.
I am only as strong as I believe
IF everyone could see me in my true form
They would know and understand
If everyone could see me when I push through
When I make it to the other side of the pain
They would not be so quick to judge.
If everyone could see the courage that breathing requires
They would stop wondering if I could accomplish something
If everyone could see that the greatest strength I have
Is in knowing that I can do what I need to
It is in knowing that though the price is high
I can hide and lick my wounds later
After I have accomplished what I am doing.
If people could understand
That I do truly know my limitations
And that I am perfectly capable of challenging them
I change and grow everyday.
I can move beyond the limitations people put on me
Because the bar I set for myself is so much higher
If everyone could see my true form
They would see the scars that have healed
And the great beauty of the healed scars,
Mixed with the great light of my soul
Have made me who I am.
Not perfect, not the same as everyone else
Sometimes more fragile
But infinitely growing and always changing.
Someone once asked me what it felt like to have PTSD. They asked me what it was like and how did I handle the things that came up because of the PTSD. I don’t remember what it was that I said or if I was able to give an accurate assessment of what it feels like. But I was asked this question again recently. And though I have a better handle on life, my depression and the triggers that set off the terrors, panic and anxiety this is what it is like.
It is waking up at night for no real reason with sweat pouring off you and your heart racing with no way to calm yourself. It is walking into a room and having a door shut to loudly and feeling like someone just hit you with a mega dose of adrenaline and you have no where to run and depending on where you are, no way to release it. It is walking through a room and a certain smell hits you and you find that you are not in the room but reliving some of the most horrific things that have ever happened. It is going to work in the morning and leaving as much of the PTSD as you can outside the door so that you can function and get through the day. It is walking back out to your car where you try to put all the pieces back together and come down from the amazing job you did of holding things together in spite of the panic.
It is learning how to draw on the things that you have learned as a survivor so that you can help someone else through their own hard times. It is trying really hard to not judge people about how they respond to you because they have no idea you are struggling to keep it together. It is realizing that for the last however many years you have lived in a fog just to get through and that you have missed so much of your life. It is living with a sense of impending doom and panic when there is nothing to be afraid of anywhere near you. It is about being terrified of losing everything that is good in your life because for the first time you don’t feel alone.
It is also about waking up and realizing that you are still alive. It is about remembering to breathe. It is about relearning to open your heart. Relearning to trust. Relearning that the world is not as dangerous or as bad as you thought. It is about being in this moment right now and knowing that I am safe. It is about remembering to feel the snow as it hits my face and not thinking about any other thing that may have happened in the snow. It is about an amazing act of courage that gets you out of bed, through the day, through the large groups of people, and safely back home. It is about trusting that you are not the things that happened to you. It is about releasing the past at whatever speed you can. Even if it can only be measured in nanos.
Having PTSD is feeling like everything from yesterday is involved in today and making it though anyway. It is about being courageous and remembering to breathe.
When I get really depressed I am a lump. That is it. I don’t go anywhere. I don’t do anything. But when I am panicked or anxiety or just plain stressed. I bake. A lot. There was a time about, well a long time ago, that I baked four different coffee cakes, cookies and bread. All in the same day. There was a cinnamon coffee cake, a chocolate coffee cake, apple coffee cake and I can’t remember the other one. Not to mention the chocolate chip cookies. Then the kids came home from school. Surprise! One of the children asked what could they do to keep me this stressed so I would always bake so much. Humor. It keeps things going.
We try to use humor in this house in order to cope with all the hiccups having someone with ptsd and depression can bring into our lives. Which means that sometimes they are subjected to horrible things like a Godzilla film fest and popcorn. (The good kind, popped in a pan and then smothered with real butter and salt). Or other random behaviors that for kids mean fun. I didn’t have much time to be a kid. I am making up for it now.
Stress or bad days dealing with crap from the past are also taken care of by what I call “Big Brother” movies. This is not a reference to 1984 but to the big brother that would step in and kick the bad guys butt that was bothering you, that kind of big brother. I don’t watch R movies. I have had way too much intensity in my life already. So I tend to stick to the PG13 versions. But some of my favorites are movies with Bruce Willis. Also Godzilla. I watched those a lot as a kid and they have great memories. If Tokyo only built their streets about a quarter of a mile wide they would not have to rebuild so much. Just a thought. One of my fall backs at the moment is Battleship. Do not ask why. I could not tell you. It just is. I was sitting on my bed with a bag of M&Ms and my computer. My daughter walks in and looks to see what I am watching. I was watching Battleship. “Hard day?” She is nothing if not perceptive. I respond with “Why do you ask?” That gets me raised eyebrows. Next thing i know I have shoved over and she is sharing my M&Ms and watching with me. She is then followed by two more of her siblings. Good thing we are a close family.
There are all sorts of things we do to find a release for stress. Mine happen to be family friendly. But finding ways to feel safe and at peace are important for me. So in honor of November be a month for being ‘Thankful’ I will say that I am thankful for being able to bake and for all the movies and popcorn I have shared with my children and husband over the years as they support me through all this. Because without them i would have to eat all those cookies. And some movies are best with others. Except when they hog the popcorn.
I get lost in books. I go to them when I am overcome with pain and sorrow. I go to them when the world becomes too much to bear. When the depression creates a loss in my heart that I can not fill in any way. I open a book. It takes me to places outside of my life. To places that I have not been. Or sometimes I am returning to after a long time away. I open a book and I am gone. My mind distracted from the pain of the past and the depression that comes in like a hungry wolf at my door. They have always been my comfort.
I did not learn to read until I was in fourth grade. I could read but I couldn’t READ. It was a struggle. Words were there but they did not make much sense. And then one day while working with at tutor they became something different. They became a key that opened up a door to a place that would save me. Somewhere to throw my mind to in dark painful times. A place to hide in while horrible things happened to my body.
And now they are places to go when the depression comes and tries to eat my soul. It is where I turn when I am feeling alone in a crowd of people. I sometimes feel like I fight tenaciously to stay in the book and not come into the real things. Like caring for myself or others.
But they are also places that lift me from where I am. A good story can lift me from the darkness. A lovely romantic story and I filled with the lightness of a good story. An adventure to the ends of the world and I am filled with a sense of adventure. I allow the books into my heart.
I have also found healing in books. Books that help me to understand why my brain reacts the way it does. Books that explain why the trauma has held such a hold on me. And how I can move beyond that grasp. Books like Why Zebras Don’t Get Ulcers by Robert Sapolsky and The Body Remembers by Babette Rothschild or The Mindful Path To Self-Compassion by Christopher Germer have given me such knowledge of myself and the things I am going through. There truly is a book for every occasion. And knowledge of myself has given me a sense of empowerment that I have never felt before.
Safety is something that should never be discounted. Feeling safe has been a very integral part of healing. When I am unable to do something because I am afraid or the situation triggers panic for me I stop and try to see how to change it. I have learned that I am a triangle peg living in a round hole world. I am way beyond the average square peg. I have found that the easiest way for me to get through things is that whenever possible to take out the hack saw and make the hole fit me.
This does not mean I go around insisting that the world fit me and everyone has to accommodate me. I try to fix it the best I can with out terribly inconveniencing anyone. I look at the picture and see what I can change. For example: I have a cell phone that I use just for me. I don’t give out the number but I use it to call home or so home can reach me. That way if I start to panic I can call home and hear a familiar voice that helps to soothe the fear. It also helps with my eternal fear of the car breaking down. This fear alone has kept me from driving very far. But that is another story.
I have also instituted the program of “safety buddy” into my life. I think that right along with service animals there should be a safety buddy program available to everyone. A safety buddy is just a friend that agrees to go with me and be there for moral support. Because I am afraid to do something.And that fear goes beyond the basic feeling of being just afraid. This is the type that precedes the big panic attacks.
For instance, I cannot be in crowds for very long before my head starts to feel like a hive of bees has been released in it, my heart rate starts to climb and I have trouble seeing. Thus if I have to go somewhere where there will be lots of people I take a safety buddy. They have the responsibility of getting me out if I cannot. Or just talking me through it if I stat to panic. I have been doing a lot more without safety buddies over the past few years. But their kindness in accompanying me has not gone unnoticed. Everyone needs a safety buddy.
So if you know someone that could use a safety buddy or you need a safety buddy there is no shame in reaching out. I have found that there has always been a hand to grasp mine. Even from unexpected places. And sometimes being a safety buddy has been, for me, a growing and rewarding experience.
Safety should never be overrated.