moving forward

navigating through the life that was and moving into the life that is

A little unsteady

on October 13, 2016

A little unsteady.

I’m a little unsteady.

Hold on. Don’t let go.

I know you’re trying

To fight when you feel like flying

I still can not watch this without tears stinging my eyes.  This dance is what depression feels like to me.  I feel very move. Every flight. Every supportive gesture. Please watch if you are so inclined.

Hold on. Don’t let go. I have had to tell myself that more in the past 5 years than ever in my life before.  I have dealt with depression since I was a teenager.  And it’s hard.  It’s not a choice. I don’t do it to myself.  I can promise you that if either of these were true, I would not choose depression.  Ever. To even suggest that is hurtful and demoralizing. Telling me not to be depressed or “to see the positive side of life” or “to be happy” is like telling a person with Celiac disease that it’s all in their head and to just eat the bread. We wish we could. We wish it was that easy, but unfortunately it is not. So while we fight to feel better, to live, to find the right medication and treatment, your support would be so much more appreciated than your judgement.

Being a part of my life, means being a part of a very real part of me, depression.  You can know me without depression, maybe you only know her.  She exists and is around the majority of the time, but when the deep depressive episodes hit, it feels like she never existed and will never be back.

I’ve fought it my whole life. I’ve been fighting.  However, since I suffered the brain injury, in the past 5 years, it’s been different. The fight has been different. I have been losing a lot.  Loss is a part of life and I understand that. If you’re human, you understand that.  You teach your kids to understand that truth.  We all love to win, but no one can win all the time. You teach your kids to deal with loss, be a good loser and good sport. Those lessons are all valuable and important but a loss to depression is not even in the same ballpark.  A loss to depression is stunting, paralyzing, dangerous and as I said before, I’ve been losing a lot.

In the initial aftermath of the accident, I had obvious things to work on.  So I fought.  I honestly look back at those first few months and know that only the grace of a loving God got me through them. Fast forward to 10 months post accident and a partial hospitalization in a mental health facility and God was letting me know that the fight was changing in nature; I no longer just needed to survive, I needed to actually live.

So I started on a new journey, a new fight.  Part of that journey has been a medication journey. The Miriam Webster dictionary defines journey as “an act or instance of traveling from one place to another”. I don’t know exactly where I was  traveling to or from, where the beginning or the end of the journey was, but I was traveling. If you know anything about antidepressant medications, changing them, the dosage, anything about it can be a waking nightmare. There is a reason many psychiatric drugs carry this warning:

Antidepressants have increased the risk of suicidal thoughts and actions in some children, teenagers, and young adults. Patients of all ages starting treatment should be watched closely for worsening of depression, suicidal thoughts or actions, unusual changes in behavior, agitation, and irritability. Patients, families, and caregivers should pay close attention to any changes, especially sudden changes in mood, behaviors, thoughts, or feelings. This is very important when an antidepressant medicine is started or when the dose is changed. Report any change in these symptoms immediately to the doctor.

Alongside this warning was the unknown of how my brain injury affected my brain and how my brain would process the medications that had worked in the past.  For literally the next 4 years, due to circumstances beyond my control and a couple of very well, interesting psychiatrists, I have essentially medicated myself.

I have fought to see a psychiatrist who specializes in brain injury, but insurance made that next to impossible. When you’re looking for a niche doctor, there are often not many out there and when the ones who are do not take your insurance, you grow weary. I knew that the medications I was taking were not right for me, but how do I fight all the red tape and make someone understand that? Psychiatrists are not psychologists.  They are not counselors.  In my experience, they have little interest in what is going on in your life and just want to know how you’re feeling.  Well, to put it bluntly, I feel like shit. Okay, well let’s try this medication then. Umm…okay. Thanks. I’d leave. I’d go through hell with the change, level out, function for a little bit.  Be steady for a little bit.  And by little bit, it could mean an hour or a day or if I was lucky, a whole week.  However, the same things would always break me: anger, aggression, mood swings, dark deep depression.  I can tell you, this is no way to live or for those who love me to live.

It didn’t feel right. I kept fighting.  At the request of my doctor at Mary Free Bed Rehabilitation hospital, I did a followup neuropsych test.  Neuropsychological testing  is done to better understand “how the brain and its abilities are affected by neurological injury or illness.” Here is more info

http://www.brainline.org/content/2011/10/a-guide-to-neuropsychological-testing.html

The test is very long and stressful. It involves many cognitive endurance tests and a whole lot of emotional observations and inquiries.  I completed one section on emotional functioning and someone who knows you well completes the same test and the results are compared.  The neuropsychologist goes over your initial findings and then your physiatrist tells you the next step.

Results day: you have no cognitive impairments. I think he anticipated excitement over this news, but there wasn’t.  I was instantly angry. I started crying.  Then why am I still struggling, why can’t I concentrate, remember, organize my thoughts, hell, my life?  He reminds me that the brain doesn’t only control your cognitive abilities.  It controls your emotional response, your emotional functioning and that given the test results, it was clear that the psychological aspect is where I continue to struggle.

Two more months of fighting to get a new psychiatrist and in July, I met the man who would change my life.  I went in prepared to give the normal answers, “not good, depressed, anxious, etc etc,” but this doctor was different. He wanted to know about my whole life.  In the beginning, I was actually a bit annoyed. Why do you need to know all of this? Why do I have to tell this whole story again? Go to all these places again?

He kept asking questions, so I kept answering them. I relived my childhood depression, my first mental health hospitalization, my accident, my husband’s death, my second mental health hospitalization. There I was again. Vulnerable.  Wide open all over again. But instead of feeling afraid, I knew I was finally in the right place.  The first medication try? A major no go. Second appointment, he rehashed everything, making sure he was clear on everything.  Again, I was slightly annoyed.  Then again within a few minutes, I realized that he was doing exactly what every psychiatrist before him should have done.

After about 35 minutes, of listening, asking more questions, consoling my fears, my tears, he said he had a plan.  He started by acknowledging that I have heard many diagnosis and that he’s not just trying to throw another one at me but that he would like to treat what he thinks is an Organic Mood Disorder.  My first thought, “my god, does everything have to be organic these days?!?!” Hey, at least my sense of humor was in tact.   We discussed the medicine options, what my plan for weening off of my other medication would be and I headed home very unsure of whether I was going to make the change.

I took a few days to research before I made my final decision.  I am a knowledge nerd.  So I started researching. My first discovery was that the medication I was prescribed is most commonly used for bi-polar and schizophrenia.  I read the words over and over again.  They are scary and confusing words and the instant denial of them and then subsequent submission to the possibility of them in your life is exhausting.  I wasn’t done learning so I kept researching. And researching. Researching what an organic mood disorder was and why brain injury is a cause of them.  For the first time, I felt heard. I felt understood.  I felt like all the ups and downs all the ugliness and shame and fear was not my fault.  I didn’t do it to myself. It wasn’t my fault.

An organic mood disorder occurs when the moods or emotions of a person are changed due to a physiological problem with the brain or nervous system as opposed to a psychiatric illness. Regardless of medication, psychotherapy, counseling and an abundance of loving family and friends, I could not seem to find a stable, steady place. Reading these five main symptoms of an organic mood disorder was like reading a chapter in the book of my life.

  • Extreme changes in personality
  • Prolonged depression
  • Easy irritability and agitation
  • Extreme aggression
  • Extreme anxiety

These factors epitomize what I have struggled with post-accident. So with excitement and a bit of fear, I started the medication. I instantly saw an improvement.  Unfortunately, I saw the opposite reaction too.  I spent the first several days feeling the best I had felt in years for about 20 hours of the day and dealing with suicidal thoughts and severely breaking down for 4 of those hours.  As life would have it, the medication took a few days to be filled and when I finally started it, both my parents and my brother were out of town for the week.  They knew I was changing medicines but I did not share what was really happening. I wasn’t about to ruin their vacations.  I realize now that that was not a very sane though but when the major depressive episodes happen, the last thing you want to do is include someone else in them.  When you don’t feel like you deserve to live, you certainly don’t deserve someone to come care for you. It’s a steep, downward slope and the lies you encounter feel so real.  The truth? We all need people who will love us so fiercely and deeply that they can save us from ourselves.  We all need to love ourselves enough to let someone into the darkness that forms us along with the light that we are so willing to share.

The episodes that week were the worst I’ve had since I was a teenager, experiencing them for the first time.  They occurred for hours and they were scary. That week I learned that when you don’t even know who you are and don’t believe you will ever find yourself again, a person who knows exactly who you really are is a game changer. A person who knows that this version of you is not you and loves you enough to say the hard things, do the hard things and fight for it to pass. I have been lucky, blessed to have several people accompany me through this journey, but it is not easy. And I know that no matter how hard it is for me, watching someone you love fall apart and feel helpless to save them can be discouraging. The figuring out, the understanding depression and its intricacies and sticking around to untangle them can be fruitless and exhausting, but every once in a while, the losing turns into a win.  The Hail Mary in the closing minute of the fourth quarter is completed and the win that you never anticipated finally sees fruition.

Over that week my boyfriend, Nick, did the hard work. A Hail Mary by definition is “a very long forward pass in American football, made in desperation with only a small chance of success.” It is done when all other avenues have failed. Nick threw the Hail Mary pass. He caught the Hail Mary pass. Hell, he may have even drawn up the play. He helped the miracle happen. He watched me with confusion, hurt, anger, fear and ultimately a love that I will never be able to fully understand, but would not be alive without. Literally. Thank you for holding onto me, getting me to this point where I can finally heal. Thank you for holding on to me when I was a little unsteady.

Please don’t be afraid to talk to someone about how you’re feeling.  Life is hard.  Along with the beautiful, silly, sunshiny moments are dark, painful moments.  Don’t feel ashamed.  Don’t feel alone. You are loved. You are cared for. Keep the people around who take the time to see you for who you really are and who love you even more for the mess that you are.

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6 responses to “A little unsteady

  1. Cynthia says:

    My heart is full of love, joy and pride!!
    Mom XO

  2. afranklin81 says:

    You said it right my dear friend! You are on a journey and though it may be bumpy at times, I am proud of you and how you keep pushing. Love you dearly! 😘

    ~Alonya

  3. Cathy Commeret-Whitcomb says:

    So proud of you, sweet Sandy! Love you tons!

  4. Danielle says:

    Hi

    I stumbled upon this post tonight somehow and I want to tell you that your story broke my heart, made me cry and realize there is hope on the days that we feel there is none. By no means have I gone through your pain and probably have no right to feel down but some days just really suck. You are inspiring beyond words and I wish you, your kids and your family nothing but great things. Thank you for sharing your story …💕💕

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