Reconstructing The Past

Jack is starting therapy soon to address the post-traumatic stress issues that are causing us all concern. The short term goal is to address the  needle phobia associated with it, which is more accurately described as a “lab-induced panic spiral,” but ultimately he has a LOT of anxiety that controls him and if we could ease that even a little bit, I’ll consider it a WIN.

There are a lot of forms to fill out when you go to any sort of specialist, so I’ve filled out so many pages my hands have gone numb and started aching (seriously). Forms for the IEP evaluation, forms for the neuropsychological evaluation, forms for the ADHD assessment, and now forms for this new therapy.

They are all similar, but different. They all include questions about the past – and this is where I pat myself on the back for keeping records (something I’m less good about with Desmond – arg!) about Jack’s younger years. I have my blog, a baby book, the CaringBridge journal, and many, many pictures. I use all of these things to answer the endless questions and reconstruct the past because my own memory is full of emotion, which can often be difficult to explain in words.

I’ve spoken with the oncology team, the social worker, the child life specialist, several therapists, and all of Jack’s other parents (of course) about the best way to move forward and address this issue. I’m the collector of information and the main distributor. Perhaps this is because I’m a writer, or because I’m a mother, or some combination of things. It’s a little bit odd that it’s me in this role, though, because my memory in general resembles swiss cheese – some memories are perfectly in tact and others are just GONE. Still, it’s up to me and somehow I’m making it work.

This whole Leukemia business started with some general sickness and then a blood test. That blood test was traumatic – for me and Jack. He was 5 and had never had one done. He had never liked needles, but he didn’t spend a lot of time thinking about them…until that day when I had to hold him down and lock my legs around him in order to keep him still for the lab tech to insert the needle (note: always ask for a pediatric phlebotomist for your child!).

I know intellectually that he screamed and cried but I don’t have a specific memory of that part – that part of my inner film is a gaping hole. Holding down my screaming child while he was being hurt was too horrible to remember clearly, so I locked it up and threw away the key.

That night, Jack had his first night terror. I’d never seen one before (in Jack or in anyone) and it scared the crap out of me! I thought it was a seizure. I didn’t connect it to the blood draw at all, even though I knew the blood draw had been traumatizing. I wasn’t thinking very clearly at the time, after all.

But I’m thinking clearly now (mostly). And after filling out a ton of questionnaires and recounting all of the methods we’ve tried and reading over various records of that time when Jack was diagnosed and having witnessed several night terrors (that are pretty much always the same – screaming, thrashing, pleading “No no no no no! Mom! No!”) – all the dots finally connected enough for me to wrap my brain around it.

That initial blood draw, and then the wave of awfulness that followed (more blood draws, an IV, surgery, an MRI, x-rays, platelet infusion, cancer diagnosis – all within the span of 4 days), was the catalyst for this ‘needle phobia.’

Knowing all I know about mental health and having lived with PTSD for decades myself, it still took me this long to wrap my head around what happened to get us to a point where Jack can NOT STAND a blood draw. Stopping to think about it makes it clear to me – OF COURSE he is terrified of blood draws. Every time he sits down and holds his arm out to a white-coated person, he is transported back to that time 3 years ago. The emotions and blurred memories of a terrified 5 year old rush back to him and suddenly he is reliving the collection of medical traumas he’s endured since he first got sick.

Even though he’s 8 now, he is still not much more equipped to handle all of that now than he was then. To him, a needle is not just a needle – it is so much more terrifying that a sharp piece of metal. To Jack, a needle represents a 3-year battle for his life. And that battle has ended, but the winner is still unclear. The cancer is gone, but we don’t know for sure that’s it gone for good and that uncertainty leads to anxiety.

With cancer out of the way, the emotions that were pushed to the background over the last few years have resurfaced and they’re kind of taking over. Jack’s had two night terrors in the last week. His anxiety is at a high again and he has a weird, nervous energy about him that he seems unable to control. He has complained several times of “feeling like he’s going under anesthesia,” which I’ve gleaned is likely some sort of dissociation, and it comes upon him at random times.

Jack brain is reconstructing the past whether he wants it to or not. And my job as his parent is to help him get the tools to understand and resolve it.

To therapy we go.

Aural Update

Is that a word – aural? I’m not sure but it is amusing to me so I’m going with it.

In case you haven’t guessed (or you’re new here), this is in reference to my post Lions and Tigers and Auras, Oh My! I thought an update might be in order.

First, Jack spent a weekend with his dad and step-mom and during his time there, his step-mom asked him how long he’s been seeing colors around people. Jack’s answer was, “Since I got my new glasses.” And we all thought, AH HA!

I did some research and found out this is called chromatic aberration, or “color ghosting” around the edges of objects. It is much more common in polycarbonate lenses (which are generally what they give to children because they are more durable) that have stronger prescriptions. Some people don’t notice it, but Jack does. Apparently.

In addition to learning this valuable information, I met with Jack’s therapist and her supervisor – both to get my questions answered and get an update on Jack’s progress in therapy. We all agreed that Jack is an extra-empathetic and intuitive kid. We also agreed that he is in need of tools to help him learn how to distance himself from the emotions of those around him so that he doesn’t absorb them, which has caused him problems at school. He comes by this naturally – I deal with it, as well. This ‘ability’ has led me to refer to myself as a ‘mood sponge’ and it can be very difficult for me to differentiate between my own feelings and those of various highly emotional people I might spend time with and care about. It can be very confusing when I get depressed out of nowhere and have no clue as to why – and then it all becomes clear when a family member or friend that I’ve been around a lot admits they’ve been struggling with depression. Anyway, I haven’t done a great job of learning how to handle this, so it’s not something I can help Jack with. Jack’s therapist, however, can help him with that as part of their regular therapy.

Regarding the whole auras and Intuitive thing – the supervising therapist clarified that she had not been suggesting that Jack meet with an Intuitive – merely, it was a resource for me (and his other parents) if we wanted some additional guidance in understanding a highly empathetic child. None of that is part of the therapy he is getting from them; it’s just extra information that we can do with what we will. I expressed our general discomfort with that route and let both therapists know that we’d like to focus on the typical therapeutic methods of helping Jack to learn to put up boundaries, which they are more than happy to do. Whew.

I didn’t bother arguing that I don’t think Jack can actually see auras or explaining about the chromatic aberration thing. Essentially, the whys of his empathetic nature aren’t so important to me – I don’t think we can really know why he is the way he is. What is really important is that he learns how to utilize his empathy to his own benefit instead of being constantly exhausted by the emotions of others around him.

Hopefully I can learn that, too! It would sure make my life easier.

Last but not least, THANK YOU to everyone who provided input on my post. It was very helpful to hear a variety of perspectives on this subject. I really appreciate it. My friend Jana recommended I get the book The Highly Intuitive Child: A Guide to Understanding and Parenting Unusually Sensitive and Empathic Children (that’s an affiliate link). I’ve started reading through it and so far it’s RIGHT ON. So if you’ve noticed your own child seems extra sensitive to the world around him/her and you’re looking for some parenting tips, go check it out!

The Littlest Disciplinarian

Living with cancer is no easy feat (duh) and the medications certainly don’t make things any smoother. There are side effects galore and dealing with those on a regular basis can be be SO incredibly frustrating. Aside from the physical effects, Jack has had difficulty with memory and regulating his emotions. Then there are those weeks when he’s on the steroid – and we are all tip toeing around hoping that we don’t make a joke that offends the kid and sends him into a depression spiral.

Jack’s done so amazingly well this past year dealing with all of the cancer crap that it really should come as no surprise that he’d stumble a bit. But still, it was surprising AND alarming.

I don’t recall when it started exactly, but sometime in the last year Jack started to get really upset with himself for forgetting things or doing things wrong and he would react by hurting himself. Sometimes he would hit himself in the face, sometimes he’d bang his head against the wall, and we even saw him push his thumbs into his eyes (cringe!). Not too long ago he came home from school and told me he’d put himself on time out during recess after a teacher asked him to stop bouncing on her shoulders.

We’ve told him over and over again how much we love him, how it’s our job as his parents to protect him and not let anyone hurt him – including himself! We explain that it’s okay to make mistakes and that we are there to remind him of what to do when those mistakes come up. His job is to try to do better in the future – not to punish himself for making those mistakes! This hasn’t seemed to get through to him, though.

Sometime before Christmas I sent a message to Jack’s Case Manager at the hospital to ask for a referral to a therapist. It was clear that Jack was having some anger management problems and we were at a loss as to how to help him express himself better. We were referred to the department’s social worker, who, unfortunately, happens to be the least helpful person who very much would like to help EVER. And so she called me and got some information and then sighed and expressed her sympathy and said she would get me some information so that we could take Jack to therapy. Except she didn’t.

A couple weeks later when I saw her at the clinic and she still hadn’t gotten me that information (and it was STILL an issue), I reminded her. Alas, no help came.

Then, in the epic awesomeness (ha) that was last week, we had another incident that scared the shit out of us. Jack was working on his homework but kept getting distracted by a paper monster sitting nearby. When David attempted to move the monster so that Jack could concentrate, Jack got upset and grabbed the monster and threw it. David reminded him that throwing things isn’t okay, and Jack responded by grabbing his pencil and aiming it right at his own eye. David grabbed it before he could do any harm, thank goodness.

But holy crap! Our six year old almost stabbed himself in the eye with a pencil to punish himself for throwing a paper monster!

So it was time to take matters in my own hands and I made an appointment for him to see a doctor that afternoon. After some discussions with the pediatrician’s office I was then referred to the intake psychologist in the psychiatry department, who gathered more information about our situation and decided we should probably skip the regular intake routine and go straight for an appointment ASAP.

Had Jack had any big changes or stressful situations in his life over the last year? Oh, gee, where do I start??

Has he ever said he wanted to die? Um, no! Shit! He’s six!

Thankfully, we got Jack an appointment with a child psychologist scheduled for Friday. I was told to keep all sharp objects, medications, cleaning supplies and other harmful things out of his reach. Which is just NOT something you expect to EVER hear in relation to your first grader! (And, well, he doesn’t have access to those things anyway! But David did hide his safety scissors from him just in case. And now he’s a bit behind on homework since pencils suddenly posed a threat.)

All of that and Jack wasn’t even on the steroids last week. He started those today!

The appointment went well. Jack liked the therapist and even drew him a picture that he got to keep (which is pretty rare). He and the therapist came up with the idea that rather than trying to hurt himself to teach himself a lesson and help him remember, he would instead draw a picture of what he wasn’t supposed to do and tape it to the wall in his bedroom. This has seemed to work so far – Jack now has a “DO NOT JUMP ON MOM” picture on his wall.

This week is steroid (Decadron) week, though, so we’ll see how it goes. We see the therapist again on February 4th. I’m hoping things won’t be too chaotic in the mean time. We could all use a less eventful week.

Divorce and Empathy

My friend Becky is in the early stages of divorce, a situation that brings out a lot of empathy in me. It’s not only a divorce – it’s also a complete shift in her life; she is completely starting over from scratch (which is fairly typical with divorces). This, naturally, takes me back to four years ago when I did the same…

I had been married almost nine years to Joe when we called it quits. We’d been together since we were 16 and neither of us had ever lived on our own. We grew up together – and we outgrew one another. We had been trying to avoid the inevitable for years, doing everything we could think of to adjust to one another, including individual AND couples counseling. Divorce came up so often in our relationship that we had already decided “if we ever get divorced, that one is YOUR cat.” He regularly talked about women who would be “next in line” and I tried to escape with friends or travel as often as I could.

Not long after moving back from the isolated northern coast of California to the Bay Area and starting a new job, I started having a serious mental breakdown. I had an incident where I could not get out of bed – I felt entirely zapped of energy and I had to be guided to the car because I was so disoriented and dizzy. The stress had built up so much that my own willpower was no match for it.

I started therapy again and got some anti-depressants. In talking with my psychiatrist (who reminded me exactly of Dustin Hoffman’s character in Stranger Than Fiction), I realized I had some serious personal issues I needed to work on that just could not get resolved while I was in that relationship with Joe. I had to start from scratch if I was going to fix anything about myself. I had to separate completely from unhealthy patterns, behaviors, and people. I had been trying to live a life that just wasn’t me for too long and I was no longer able to stuff myself in that box.

The conversation about separating took about two minutes. Joe and I both new where we stood with one another and knew it’d be a relief to not be together anymore. Everything else aside, we were a bad match – nearly complete opposites when it came to goals, personality, and values. This was not difficult to see. The only reason our relationship had been ‘working’ was because I’d been suppressing so much of myself for so long, trying to mold myself into a good wife for Joe. I might have continued to do this if my own psyche hadn’t put a stop to it. Even Joe had told me, “You aren’t the person I fell in love with at 16.” He was right.

Almost all the difficulty in the separation came out of the reactions of family and friends (not everyone, mind you – we had support, as well). Someone made the comment that because Joe and I had been together so long, had seemed so comfortable in the way things were, that they had placed us in the category of “not breaking up ever.”

Reactions varied – some took sides (although we both maintained that it was a mutual decision) and others felt scared about their own relationships. People argued that we hadn’t tried hard enough, hadn’t done enough to save the relationship. As hard as my depressed and scattered brain tried to make sense of it all for others, I was not able to coherently explain that the relationship was a fraud – that I was a fraud – that I had buried myself for a decade. The relationship was an illusion and there were some fundamental problems with me (and Joe, as well) that needed to be fixed. Guessing at the people we would likely be once these issues were addressed, it was blatantly obvious we wouldn’t choose to be together (if even friends) once healthy.

We both grieved the end of the relationship and the major upheaval in our lives. Joe did so openly, as he is a very outgoing person. I, on the other hand, am more private – it’s only through writing that I am able to share most of what I’m thinking and feeling. My therapists have always had to PULL information from me.

Unfortunately, my lack of demonstrativeness was seen by others as coldness. I didn’t seem to be upset enough. I seemed to be carrying on just fine. (Meanwhile, I was taking bathroom breaks often to deal with my panic attacks in private. The idea that my personal life would affect things like work was appalling to me – I needed to work and I needed to take care of my child and I needed to start all over. I didn’t have time for grief.) A number of people were MAD at me – felt that my seeming indifference was aimed at Joe. The things that were said about me hurt deeply, especially since I was struggling with my long-ignored mental health in addition to this huge life change.

Some of the relationships I had before the split were never quite mended. I still haven’t yet figured out my place with my family-by-marriage. I was fully entrenched in that family for over a decade and loved them as my own. But somehow when Joe and I split, I lost my place with them. I still feel most conflicted about that.

I write all of this not because I want sympathy after the fact but because I would like to implore everyone out there to have empathy for those going through divorce – for BOTH people. Joe did horrible things to me during our marriage and I did horrible things to him, but in the end – even if those things had never occurred – we were wrong for one another and we both knew it. Neither of us wanted our child to grow up thinking that he should force himself to stay in a bad situation that was leaching him of happiness. We wanted to show him how to go out and seek what he needed, to find those things that feed his soul.

I’m proud of myself for walking away from the marriage. I’m proud of myself for sending the message to my son that love and happiness are important. I’m proud of deciding that *I* was important.

Divorce is hellish, no matter how amicable it is. Starting over SUCKS and everyone makes mistakes while doing it – they are, after all, making extremely important decisions about life while under a ton of stress. But sometimes, even as painful as it is, it’s the right thing to do. Without happiness, how is life worth living?

I am blogging for mental health

May is Mental Health Month and today in particular is Mental Health Blogging Day.  I am a longtime sufferer of mentalMental Health Blog Party Badge illness and an advocate for awareness and support through the community support website Band Back Together.

I think days like this are important to let others know that they are not alone in their struggles with mental health issues.  Whether you are a sufferer, a friend, a family member, or an acquaintance of someone with a mental health issue, you can educate yourself and others and help make the world a more compassionate and supportive place.

My name is Crystal and I deal with mental illness on a regular basis.

Sometimes I don’t act like ME because I suffer from chronic Depression (diagnosed at age 14), Anxiety, and Post Traumatic Stress Disorder (DES-NOS, specifically).  I attend weekly therapy and take medication to help me manage these issues.  I have difficulties managing my response to stressful situations and memories due to the way that my brain processes information/stimuli – multiple traumas throughout my life have impacted the way I view and experience the world around me.

Despite dealing with these issues for so much of my life, I can still live a normal life – I am not ‘crazy.’  I have a wonderful relationship with my husband and son.  I have a great job at a place I’ve worked for the past 3.5 years.  I have friends and hobbies and many of the same worries that others out there have.

Most days I am a very high functioning individual.  Sometimes I need to step back from my responsibilities a little bit and focus on taking extra care of myself.  There are those days when I can’t get out of bed – on those days I need help from my support network of family and friends.  I have fantastic people in my life who have helped me even when they don’t know it.

*****

I have heard various awful things said about those who suffer from mental illness over the years, even from people I love.  The stigma of mental illness still leads people to state that they wouldn’t vote for a politician who was known to have a mental disorder, or that those with a mental illness should not have children.  It’s disheartening to hear these things and I’m hopeful that as we speak out, the stigma will lift more and more.

If you or someone you know suffers from a mental illness, please take the time to educate yourself about the symptoms and effects on their life.  If you would like to reach out to a community for support please visit Band Back Together.

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