Sunday, December 18, 2016

My Traumatic Brain Injury, A Gorilla, and How You Can Help

It's now a week before Christmas Eve and there have been some improvements, some setbacks, and new developments as I teeter and tumble down this road of recovery. Since I last wrote, I have quit seeing the horrible program I vented about. I filed a grievance with them and chose a new medical system and a new Dr. So far, the new Dr. and her staff have treated me like a queen compared to the old place. They immediately made referrals to at least nine different Dr's and Specialists. Every interaction with them has been nothing but an experience of kindness.

The other week I went for an appointment and had a pretty long break before my next appointment. My eyes and head were hurting so bad, even with sunglasses on in their office. They offered me something for my headache (more like a migraine, they are concussion headaches) and then asked if I would like to just rest on the exam table like a little bed with the lights off while I waited for my next appointment. This might seem like no big deal but after the ridiculous treatment I had before, it resulted in me hugging the nurse on my way out. I thanked her for her kindness and for simply treating me like a human.

I am seeing someone for my soft tissue injury. I don't have a great way to explain it but it is different than muscle injuries. It's like a super tight band around most of my body that makes simple movements painful and quite an ordeal. This Dr. works on breaking up bundles of soft tissue in short weekly appointments. I yelled so loud on the first visit I was positive everyone in the waiting room could hear me. The Dr. said that means it is working.

To me it feels like he has a big nail that belongs in a wall that he is pressing down on as hard as he possibly can and dragging it across the worst areas. Insanely painful but the sessions are short so it is over fast. And temporarily it does seem to restore more movement to those areas but does little to decrease pain.

I still cry out when I get dressed and my feet still refuse to lift a normal height off of the floor (in addition to my horrible lack of movement and pain in my lower back and hips). I wake up so stiff in the mornings and then when/if that eases up it is continuous pain in my back, hips, neck, and shoulders. A lot of days the pain radiates down both legs and in my ankles. It isn't a pinched nerve type of pain. It feels like it is this awful aching in my bones. I cry out getting dressed and putting on my seat belt due to lack of allowed movement.

Showers are still a monster for me to conquer and I dread every single one. I usually sob during them from the dizziness, nausea, and pain of trying to reach and bend. I purchased a shower chair to help but I must have measured wrong because it won't fit in my tub. I hope to get a new one and a big handle to attach to the side of the tub to hold onto when I get in and out. My legs still won't lift high enough to clear the side of the tub but I have learned to angle them so they will.

After falling out of my bed yet again pretty recently, my Dr. suggested a small bed rail because it is just a matter of time before I break something or hit my head on my nightstand. I know I can not reach for things on the floor because my back can't pull me back up, but in the moment my brain forgets until it is too late. The small bed rail would prevent that and be a visual reminder.

I am looking at getting a home health care aide, because all these months later I found out on my own that my insurance will cover one to some extent. They can help with grocery shopping (a herculean task for TBI patients), meal preparation, and even drive me to my appointments... which would have been incredibly helpful before but at least I found out about it at all.

The brain app I have on my phone is encouraging. My scores from when I started using it daily to now have increased a lot. However I notice that games I was good at before are now some of my worst. My speed has decreased. There's still this delay in what I see on the screen before my brain processes it and responds. It feels like the slowest internet speed on earth. This happens online, when reading, and during conversations as well. It had improved but now suddenly it is worse.

I confuse my right with my left, get lost even with a GPS because of the delay I wrote about above, and have this increased anxiety whenever I go places, especially new places, that is worse than it was before. The drenching sweats still happen. I get tired easily and often find myself mentally and emotionally fatigued to the point that I can't hold a conversation. I just need to sit and be quiet. It still takes me several hours to vacuum. I do a little, rest for a while, do a little, rest for a while, etc. Every chore is divided into steps so I don't get overwhelmed.

Cooking is something I haven't returned to, although I did get crazy and make grilled cheese sandwiches recently. I put stuff in the oven, set the timer, and then space out and don't hear the timer and return to burnt food. One of my attempts to make a frozen pizza, for example, ended up in me burning through a few layers of skin on my wrist before I realized to pull my arm back, a little singed hair, and almost setting the trash can on fire.

My eyes still can't deal with light of any kind. I tend to spend too much time on my laptop or phone and end up pretty sick from it. Just pulling my curtains back in my dark bedroom a few inches makes me sick within ten minutes - severe eye pain (feels like the worst eye strain you can imagine), a headache, and nausea. So I still spend most of my time making phone calls, writing emails, working on my new little store, in the dark. It's comfortable of course but after 5 months of this it is getting pretty old. Driving in the sunlight, even with special sunglasses makes me sick. Being in Dr's offices or any store with lights makes me sick.

A few days ago I fell in a business parking lot while walking back to my car. I luckily wasn't hurt and did not hit my head - but my head could have gone without the jolt. I sat there for a couple of minutes with my brain completely silent. It was like someone pressed the pause or mute button. I stared around, confused. Finally I realized I needed to get up. Then I had to figure out how - by placing my hands on the ground and standing.

My memory, which was diagnosed as Post Traumatic Amnesia, still requires me to write down every single thing. If I want to Google something later, I have to write it down. Often I don't write it down fast enough and it is gone. I have a hard time with names. Not like the usual, I can't remember names, but to the point where I can see someone a couple times a week for months and still have to guess their name. It's frustrating (as is a lot of this) and makes me feel ashamed. I forget faces within 30 minutes or less. I stumble with my speech and word finding. I forget to eat. I forget to get up and go to the bathroom. I often feel like a confused, lost little kid. I forget simple things that I have always known.

I know my IQ has not recovered fully. But at the same time, I'm still in here, and I know that I am not stupid. I have forgotten a lot of very simple things I used to do as part of my career and other memories pre-wreck. This awareness happened fairly recently and was upsetting. I thought my memory issues were all short term and after the wreck. Now all of a sudden the issue extends to before the wreck. Where there was once knowledge about things, there is this vast nothingness. I get scared and worried that I might not recover more, because that is completely possible.

I sit and think, "Is this it? Is this the new me?". And it is almost too much to contemplate. 

My creative writing skills pop up very rarely. That's why I have so little to say of any value on Twitter recently. This worries me, the loss of creative words and expression. There are other things, but I can't remember them right now (ha!). I know I read that symptoms of a TBI can show up months later and I believe there have been a few to surprise me recently. This worries me too.

Recently, after realizing there were five online shops out there - with the logo I created almost seven years ago for my blog - being used to sell merchandise... I decided to have those taken down and then start my own store (visit here: http://www.cafepress.com/ssparklesdaily ). It's a way for me to help myself prolong my homeless countdown. I have uploaded two different quotes/designs so far on an incredible amount of products. Only a fairly small portion of the proceeds go to me but it's something. As of right now I have sold only a couple of items. It might be a gigantic waste of time but at least I am still trying.

There's so much unknown with traumatic brain injuries - how long it takes to heal because it varies by person, what side effects will be permanent, and how much a role my previous head injuries play into what I am dealing with. I know they definitely add up, just look up "CTE" or watch the movie "Concussion". While CTE often focuses on football players and other sports figures, information regarding its existence in soldiers and survivors of domestic violence has begun to be more widely discussed.

I made a list recently of all of my possible and definite concussions since I was a kid up until now and the total was upwards of fifteen.

Last night, while trying to fall asleep I began thinking about a gorilla at a zoo I once frequented. I could stand there and watch him for a long time. He would sit there in the grass looking right back at me with these soulful sad eyes that had me mesmerized and occasionally made my eyes water. He was magnificent and full of strength and beauty. I always wondered what he was thinking as he sat there. Was he content with his artificial life in an area he lived in alone? Did he know that his life wasn't how it was supposed to be but had no way to change it?

I'm not sure if it makes sense, but I feel like that gorilla lately. I remember life before my TBI. I can feel the change. I see people look at me like a curious, odd, out of place creature. I have people respond to me like one as well. I feel on display at times.

My mind is this artificial environment that is me but isn't me. It's not how it's supposed to be and I live here alone, unable to change it. 

I have had unexpected expenses and new ones with the need to purchase things to make my life easier and safer. I am still looking at March being the start of my homelessness. And as that month, my birthday month, inches closer and closer, the more stressed and worried I become. Some of my Dr's I won't get established with until January and February and their follow up sessions will likely be at least once a week for a few months.

As always you can donate via my GoFundMe page created by my best friend: GoFundMe

Or via the secure PayPal buttons on this site. They are located in a few locations and are yellow buttons that say "Donate". Easy to find on a PC. To find on a mobile device, click on "View as
Mobile Page" at the bottom of this article.

If you'd rather shop for you or someone else and get something tangible in return, check out My Little Store.

If you can't do any of the above, tweeting this article as often as you feel up to it and encouraging others to do the same is a huge help. Feel free to share on other social media sites like Facebook.

Thank you to those of you that have donated so far. To those that have reached out with kind and encouraging words. To those that continue to check on me over the past 5 months vs those that don't because they think it is all bullshit or like a cold that will just go away.

Many don't understand traumatic brain injuries. They think of concussions and assume I should be better by now. When this first happened, I thought the same thing. But that's not how it works for millions of people each year that end up permanently disabled, never recover fully, and the heartbreaking large numbers of those that do end up homeless or committing suicide.

If this doesn't work out or some kind of miracle doesn't befall me, please know that your efforts were not in vain. You kept me going for almost half a year. You lifted me up enough to give me the energy to keep trying. And I am grateful in a way that I don't know how to put into words.

Until next time.

Love,
Stephanie


My gorilla and my awful attempt at a photo of him.


Wednesday, May 25, 2016

Beauty Marks

I see a lot of social media about scars- literal and metaphorical. Photos, quotes, tweets, posts, you name it. And there are all kinds of scars, ones we inflict on ourselves, ones that others inflict upon us, and ones that happen from accidents. But the ones that are the hardest to heal are on the inside where we can't see them. We know they are there, aching and trying to heal, but nobody but us can feel them.

It's hard to feel like you are scarred permanently and nobody can feel it but you. It's isolating, it's depressing, and it makes us feel damaged. But we are not damaged because of these scars. We are different and unique because of them. We are stronger for surviving them. We are part of a worldwide club of survivors that have been through unspeakable things.

My challenge to you today is to accept those scars, inside and out. Learn to love them like you do your eyes or your hair. Learn to accept them like you do your fingers and toes. They are a part of you and without them your story would be so very different. Maybe it would be less painful, you would feel less broken, but you would still not be the wonderful version of YOU that you are today.

You are kinder because of them, you love harder, you accept others faster, and you are more empathetic to stories of suffering. You don't look down on others with scars, you understand. You don't reject someone that feels broken, you accept them as family. And this? This is beautiful.

Maybe we need to think of a different word for scars, like they do for birthmarks. They often call birthmarks beauty marks and I don't see why we can't start calling our scars the same thing. Because that's exactly what they are- beauty marks left by life on someone strong enough to carry them.




Friday, April 29, 2016

Why We Need to Stop Asking Why She Stays - A Guest Post By Danika M.






Several years ago, graphic footage of Ray Rice abusing his partner Janae circulated on media outlets everywhere. Rice was vilified by the public, and subsequently released from his contract by the Baltimore Ravens. Despite this, much to public surprise, Ray and Janae were married just one month later. Later conversations regarding the issue involved bystanders asking why Janae stayed despite her then-fiance’s shocking abuse.


It’s a question nearly every domestic violence survivor has heard at some point in their recovery. “Why didn’t you just leave?” For those who haven’t experienced abuse, the issue may seem clear cut: if somebody is physically or emotionally abusive, you end the relationship.


But for women who have experienced domestic abuse, the question is far more complex, and the answers are even more complicated. Leaving an abusive relationship is often an emotionally devastating, and sometimes dangerous task--and furthermore, domestic violence is a bigger problem than most realize.


One in four women will be the victim of domestic violence at some point during their lifetime. In fact,  some treatment centers indicate that injuries from domestic violence are the leading cause of injury among women, and are “more common than automobile accidents, muggings, and rapes combined.” Victims often struggle with overcoming mental health issues and are more likely to suffer from a barrage of other health concerns, including PTSD, stockholm syndrome, stroke, and alcohol abuse. Their children are just as likely to experience the negative effects, as an estimated 40 percent of children in the United States are exposed to violence.


Why do women risk their well-being to maintain relationships with people who harm them? As was highlighted in previous posts, there are a variety of intersecting factors which might affect a victim, including stockholm syndrome, guilt, fear, dependency, finances, or family pressures. But asking why victims stay in abusive situations is the wrong way to approach a painful and complex issue--one which places the responsibility on the victim, rather than the abuser.


“When we solely focus on whether a survivor stays with or leaves their abusive partner, we place all the responsibility on the survivor rather than holding an abuser accountable,” Chai Jindasurat, the Program Coordinator of the Anti-Violence Project told ThinkProgress. “Intimate partner violence is about power and control, and leaving can be an extremely dangerous and frightening option for survivors.”

Though certainly a well intentioned question, asking why women stay with their abusers reinforces the idea that victimized women are responsible from removing themselves from abusive situations, rather than inquiring why men abuse them in the first place. Instead, as a society, we should be asking questions that place responsibility back to the abusers. As the National Network to End Domestic Violence points out, “A better question is, Why does the abuser choose to abuse?”

Wednesday, January 20, 2016

Survivor Superheroes







Survivors of trauma often develop pretty amazing abilities and traits as a result of what they have endured. We tend to be more compassionate, less judgmental, extremely self-aware and mindful, and incredibly strong. If we were superheroes our capes would likely be made of steel and be embossed with a brilliant shining heart. I am proud to be among these superheroes, though I am quick to denounce that I am one myself, and proud to know that an entire army of victors over trauma exists in a world that continues to dish out more.

We tend to be more compassionate than those that have never stared into the dark abyss that is recovering from trauma. We know firsthand how harsh life can be and we are the first ones to extend a helping hand to those struggling to stand. We are quick to be caretakers of the sick and ailing, which at times can become too overwhelming and exhausting. Our desire to save the world from suffering is a powerful driving force in our lives. 

We want justice for ourselves, for those that walk beside us in survival hood, and for those that will eventually join us as fellow survivors.

It is important to remember that compassion fatigue can happen to caregivers of any type and survivors are among the most at risk. Remember to pause and take time for yourself. Practice good self-care and recognize when you are doing too much. Learn to say no. Learn to set boundaries. Listen to your own mind and body when they tell you that you are over fatigued. Take care of you first and your ability to care for others will triple as a result.

Because we know that life isn’t simply black and white, we are not as quick to judge others that have struggled in life. We all make mistakes, fall victim to circumstance, and have life events happen that are out of our control. A survivor knows this and recognizes the pain in another person’s eyes long before they notice what others would judge about their current life situation. We know that life changes in an instant and that it can take years, decades even, to bounce back and heal from what we experience.

Survivors are extremely self-aware and mindful of other people and their surroundings. Part of this is from PTSD which can create hyper alertness. But mainly it is a side-effect of recovering from trauma. As we heal, we are forced to look inward and reflect on so much in our lives at ages when other people are carefree.

Self-awareness hopefully leads to learning to love and accept ourselves while being mindful of our role in society and society in general. We pick up on the vibes of others and are usually the first ones to notice when someone else is giving subtle clues that they are hurting or experiencing trauma. This makes us great caretakers, first responders, therapists, friends, significant others, teachers, parents… anything that involves caring for and being sensitive to the feelings of others.

Last but far from least, survivors are incredibly strong. We have survived what others didn’t, what others couldn’t. We have bounced back from depths only we understand- some of us time and time again. We are filled with compassion, empathy, self-awareness, and a strength that could rival the toughest of metals. You see, surviving trauma isn’t all about the bad- the scars, the side effects, the lost years. Surviving trauma is also about the good, the amazing, the loving person it has helped you become.

So wear that cape with your big shining heart and go out there and show the world what kind of superhero you truly are.

Monday, January 11, 2016

Why Do We Go Back? - A Guest Post From A Male Perspective (Anonymous)



A year ago, I was pretty damn depressed to be honest. Which is kind of the point of this blog post. I was working about 70 hours a week, not because I had some asshole boss pushing me, but because I was self employed, and doing it to myself. I was a self-confessed workaholic.

Last spring and this summer, I hit a reset button. I am now a recovering workaholic still retaining and battling issues from that lifestyle. (I’d go to meetings, but who has time for twelve steps? I’m working over here!) After an emotionally messy divorce, I now have my son full time, am headed back to finish my college degree. While it is tough balancing a kid, a career, and school with a new relationship (which includes wedding planning) it’s worth it. Because the funk is gone.

A little over six years ago, I left my last marriage. Then I went back to try again, before leaving for good. I’d classify the return as a huge mistake that may have done more harm than good, but it did force me to work on myself, and along the way I learned some things.

Our relationship was not an abusive one in the traditional sense of the word, although there was psychological and mental trauma on both sides. I classify myself as a survivor, but not of abuse, simply of life. 

But maybe if I share why I went back, and why I left again. it will help others in much worse situations understand one simple thing: although there is danger in returning, there are reasons we keep doing so, and moving forward is most often a much better choice.


I did it for the kids.

This was the most noble and horrible excuse I used to boomerang into disaster. Because the kids did not understand how toxic their mother and my marriage was, and what a healthy relationship might look like, they encouraged me to return home.

The truth is, they missed me, but not the home life that me being with their mother fostered. I went back into the home with a “new attitude” but lost sight of that pretty quickly, falling back into old, unhealthy routines to cope with things I knew were not right.

Not only that, but I developed new routines for coping, finding new ways to hide from the situation. I spun into being a workaholic, something I had always struggled with, but took it to a new extreme. While this was great for my career (temporarily), it was horrible for my family, and the kids.

At the end of the day, it would have been better for them to have healthy parents who were not together than unhealthy parents in the same house. Going back for the kids may have hurt them more than it helped.

Staying together is the right thing to do.

Maybe this comes out of my religious background, the whole divorce is evil, until death do you part thing. Even though the reason I left was mutually reasonable, when she and the kids both asked me to come back, I felt oddly guilty, and compelled to make things right.

But history had shown there was no “making things right” in our relationship. We were clearly headed opposite directions, and neither of us supported the other. I dreamed of quitting my day job and pursuing my dreams, which involved paying off debt and working long hours for a while. In fact, we were often opposed to the other person’s dreams, a fact that became even more evident when my writing career began to take off.

My approach was wrong. I did neglect my family in favor of work, because I was using classic avoidance techniques rather than facing the issues at hand. But returning to a toxic relationship is seldom the “right thing to do.” There are a few things I didn’t think through, but that are important to consider.

  • Why didn’t it work the first time around, and have those issues been resolved?
  • Are you acting out of loneliness and desperation?
  • Can you ever really dismiss the breakup, and get past it? (Probably not)


Answering these questions before I went back, creating feelings of obligation to second chances, and growing my own baggage would have helped me determine if returning and trying to stay together was really the right thing to do.

Discomfort is familiar and comfortable.

Doesn’t that statement contradict itself? Yep, it sure does, and yet all too often it is true. It is kind of like eating at McDonald’s. It’s familiar, mediocre food with disastrous health consequences, yet thousands of American’s eat there, and often.

Going back to a familiar situation, even if it is painful, is comfortable. It has a lot to do with how our brains work, and how effectively we deal with change, which for most of us is not very well. A return keeps us from having to move on, which involves personal growth, an often painful process.

I finally left for almost the same reasons I went back, oddly enough.

I left for the kids.

It has been hard for some of them to see, especially those no longer living with me. But for the youngest, who has seen the transformation up close, and fallen in love with my fiance (and her with him, an incredible blessing), he has been able to see that a healthy and happy dad is a better dad who is kinder and more loving.

Even though divorce is hard on even adult kids, over time they are all coming to realize this change, while painful short term, is for the best in the long run.

Staying together no matter what is the wrong thing to do.

A toxic relationship not only poisons those in it, but those around them. Leaving that relationship and moving on is not only good for the couple, but good their friends, family, and almost anyone who interacts with them.

Kids learn by example, and showing them an unhealthy way to communicate and deal with problems makes them believe this is “normal” and “acceptable.” It bleeds over into the way they treat others, and will handle their relationships in the future.

Whether they respond by staying in a bad situation themselves or letting their past affect their expectations of others, unless they break the pattern, it can perpetuate their own unhealthy or toxic relationships.

Constantly feeling bad is not comfortable even if it’s familiar.


Does your partner constantly bring out your worst qualities, and you feel bad about that? Are you constantly in a power struggle? Is your partner frequently jealous, and tries to make you feel bad about spending time with others? Do you feel bad about yourself when you’re around your partner? 


These are all signs of a toxic relationship, yet people live with them every day.

There are myths about power in relationships, needing a “kitchen pass” from your partner, and whether feeling bad is normal or acceptable. But a you that is constantly sad or feels bad about yourself is not the best you that you can be. Anyone in your life not in support of that is toxic. If they are friends, limiting or cutting off your exposure to them may be the answer. However, in the instance of your partner, such limits may not be possible.

Even if these feelings are familiar, they are not healthy, and not really comfortable. Returning to that place, or even going there in the first place only results in pain.

If you’ve left a relationship, going back is rarely a good idea. Probably there’s a good reason or a set of reasons you left in the first place. Returning seldom creates a happy ending for you, the kids, or anyone around you. Moving forward, although difficult, is a healthier choice.