I am so frustrated, encouraged, worried, angry, disillusioned and exhausted all at the same time. This past week and a half has been ridiculous. Every time I would be ready to sit down after thinking through things that have transpired, something else would happen and I would delay the blog post and process the new insight. Well, I can't hold this in anymore, so I am going to break this down by associated emotion.
Frustrated: I just found out today that in the span of a year I went from perfect reading on my blood screenings to being pre-diabetic and borderline high cholesterol. I feel like no matter what I do to better take care of my physical health that the PTSD is slowly killing me and it frustrates the hell out of me. What do I have to do to get these train wreck of health problem after health problem under control? Live like a monk? Deny myself all pleasures? Develop workout anorexia? Starve? GAH! I want to throw things in frustration but the inanimate objects don't deserve that kind of abuse.
Worried, Exhausted: My daughter is seriously sick for the first time. Bronchitis and bronchiolitis. She woke up Friday night crying and coughing, post-nasal drip, and a fever. I didn't sleep from Friday night until Monday night when her fever finally broke. With already being on heightened alert after the bombings in Boston, I started thinking that something was seriously wrong with my daughter's health. I was the youngest and never was around sick kids so I had no idea that this kind of sick was normal. I never really got sick. I remember having the pukes once as a kid and mild fevers a few times, but that's it. I never got strep, maybe bronchitis once, chicken pox was only three or four spots and a fever. I had no idea it could be this bad and not be life-threatening. I was relieved Monday night and was looking forward to catching up on some sleep on Tuesday. The cough was resurgent Tuesday night. My daughter didn't pass out until after 5AM Wednesday morning and didn't sleep at school either. Needless to say, I'm worn a little thin right now.
Angry, Disillusioned: I went to group today, looking forward to talking with them about stuff. Very shortly into group, the new therapist told me I could not blog about what I learned in group anymore. I got very angry as blogging about what I learn is at the core of my ability to cope. I explained to her that I have never once violated anyone's privacy and only bring up things that I learn and have worked through as a result of going to group. I told her that I had received express consent from the group members before I blogged about it. My previous group doc had signed off on it and over the course of the past year, it has become an integral part of my therapeutic process. She still refused even after directly asking the members of the group who all said they were fine with it. When I stated if no-one has a problem with it...
She raised her hand straight above her head and said she had a problem with it. That behavior, in and of itself, was exceptionally unprofessional. I got really angry and told her that I would no longer be part of her group. She professed to not understanding why it had to be that black and white for me. New flash, moron. Everything is black and white with veterans with PTSD. The fact that she didn't know that, combined with her extremely confrontational attitude illustrated to me that the 'new hires' at the VA are 'warm bodies'. I continue to wonder if she got her degree out of a cracker jack box. It took me eight years to try group therapy again after my first horrible experience. What I have come to recognize is that aside from Doctor Casagrande, I have never had a client/doctor relationship at the VA that I felt was constructive. When I talked about it with my father tonight over dinner, he made an incredibly astute observation: "She doesn't care about the welfare or privacy of the veterans in the group. She doesn't want to see herself critiqued online." Wow. Boy did that hit home. Her refusal was all about her ego.
Encouraged: I got the money into my account from the crowdfunding and started the ball rolling. I also got all four of my first choice board members and they are a perfect fit to effectively govern the non-profit. I have started the process of incorporating and have gotten the landing pages for the websites up and running and am incredibly proud of the landing page for Support No Stigma. I still can't believe I have been so fortunate to be surrounded by such good people in my life. Honestly, I think that the love for my family and the good works I do on here and now in forming my non-profit are the only things that have kept me from institutionalization. Especially over this past week.
So there you have it. What a ride, huh? It's all about the timing. Individually, any one of these issues would have been manageable. The fact that timing crammed them all together in a seven day span almost put me under. All I know is I am relieved and grateful that I am still here. A year ago, things would have played out very differently.
Well, let's just say that it's mostly impersonal, cold. You can't capture the imagination of readers online the way you can when you talk to them in person.
With this in mind, I will be focusing on "Boots on the Ground" (BOG) initiatives first to invest my local community in my message and the success of my non-profit. I will be planning a 5K in my area as a starting place. I will then use this proof of concept as a means for other communities around the country to become involved.
If you want to be some of those boots on the ground, please let me know. If you believe in my mission support its inception...and get in on the ground floor. Help me hit the ground marching.
After everything that happened yesterday, I needed to find answers. I was in no condition to work but tried anyways. I made through a little over two and a half hours of my shift before I couldn't hide my grief anymore. I was emotionally drained and physically exhausted. I left work and I headed straight to the VA and asked to speak to the Patient Advocate. I was ushered into his office and he asked me how I was doing and what he could do for me.
I told him about the past month and the way that I had been treated and that I was very upset with the manner in which I had been informed of Doctor Casagrande's passing. He responded without remorse that he and upper level administration had decided the best way to handle this 'situation' was to not allow non-clinical personnel to say anything and to keep mum until the vets came in for their next scheduled appointments. At that time another doc would be waiting to (sarcasm here) 'blindside' an unsuspecting veteran with this horrible news. I was stunned. I told the advocate that I don't have scheduled sessions with Doc Casagrande and that I was only in his group CPT session. The advocate responded, "So many people come and go through the groups that we didn't bother." Again - stunned. I told the advocate it would have been easy to see, if he would have bothered to look at the rosters that I had been at EVERY session for the last six to nine months. Remorseless, he deflected my comment with something along the lines of what's done is done and 'gee, we're so sorry you found out this way.' I followed up by telling him that no one offered me grief counseling, nothing. He very quickly offered, :"would you like to talk to someone now?"
It was at this point that I realized that the administrators had no flipping clue how to handle these situations. This advocate, along with administration higher up, put hundreds of behavioral health patients at risk with their approach to dealing with the doc's passing. I wondered if the disconnect flowed into the care side, so I said I would like to talk to someone. I was introduced to a clinician (I don't remember if she was a doc or a nurse or a social worker) and talked about how messed up I was from all of this and it became very evident to me that she was distressed at how distressed I was. She told me that every veteran that she had seen in connection to Doc Casagrande's death had reacted EXACTLY the same way I have. She also mentioned (although I don't think she really meant to) that there were still veterans that didn't know because they hadn't been in for their scheduled appointments yet. She told me, "I know, after everything that's happened that you have no reason to trust us, but would you at least talk to one of the docs tomorrow who is taking over Doc Casagrande's patients?"
I could sense her frustration with the whole situation. This was an utter mess and Doc's co-workers were just as caught in this storm as I was. I said I would meet with someone tomorrow and I scheduled my time to meet.
After I left and was on my way home, I thought about the whole situation and it made me incredibly disgusted. That patient advocate was to advocate for what was best for the patients. Either one of two things explain his decision: He was lazy and didn't want to put in the extra work and due diligence to make sure every one of the doc's patients was informed as quickly as possible OR he was put in the position to make this decision without any knowledge of what WAS best for us. The VA needs to understand how much danger they put the veterans in. If I was any less stable than I am, I would have done things I would have regretted (become a danger to others) or done something I would never be able to regret (committed suicide). Every veteran should have been afforded an equal opportunity to grieve and should have been told in enough time to attend the memorial services. The way they decided to handle this situation was reprehensible and inhumane.
So, I stand by what I said yesterday in my post. The VA needs radical change. And it needs it now. No longer can we continue to put our nation's heroes at risk due to the ineptitude or apathy of bureaucrats. I will fight from now until my last breath to make sure this change happens. Come hell or high water. I have had people tell me the system is too big to change. I respond with this. Bullshit. When the people you are designed to serve are forced to go elsewhere to ensure they receive quality care and compassion, you have failed to meet the most basic of requirements for your continued existence. I will not bear the legacy costs of a broken VA when those legacy costs are paid for with the blood of my fellow veterans who have lost hope and take their own lives. The time for change is now. Let's be heard, folks. Don't stand silent and condone this with your inaction. Fight for the change we all deserve.
I try to keep the tears from hitting the keyboard as I write this. I found out today that I lost a man who held a special significance in my life. In his honor, I want to share what I knew of the man.
Read His Obituary Here: Dr. Joseph Casagrande
I never even knew his first name. We just always called him 'doc'. I didn't even know him for very long, but Doc Casagrande had a huge impact on my life. About a year ago, when I was out on short-term disability and learning how to cope with my PTSD, I found out about his Cognitive Processing Therapy (CPT) Group and asked to join it. That's when I first met him. We met one on on and he asked me pointedly whether I was committed to learning the tools I needed to learn to better my life.
That should have been the first clue that this doc was different. I went to my first group session two weeks later...and my life was changed forever.
Over the course of the past year, I have taken control of my life. I still have horrible nightmares, I still get triggered. I still have to fight the depression, the anxiety. The difference is that I have acquired, through emotional growth and a considerable amount of emotional pain, how to better cope with these symptoms of PTSD. I learned these skills in my CPT group and at the direction of Doc Casagrande.
He was an amazing man. He never wore his heart on his sleeve but his passion for helping veterans came through in his straightforward attitude and brutal honesty. He told us what we needed to hear, no matter how difficult. This was his gift to us, he taught us to look at our behaviors and beliefs unflinchingly, to never back away from a problem. Doc always knew what we needed to hear and talk about the most and directed group discussion. He didn't drone on and monopolize group time. He asked pointed questions and, throught his direction and the support of the other veterans in the group, each of us learned more about ourselves and what we could do to make changes for the better.
Four weeks ago, Doc wasn't at group. Neither was anyone else. When I asked where everyone was, I was told that Doc was out sick. Concerned, I let it ride. Two Wednesdays ago, someone else was leading the group, a clinical social worker (for more about this group session, click here.) By this time, Doc Casagrande had already passed away. No one said anything. When I asked about Doc, the social worker evaded the questions with 'I don't knows'. Growing more and more concerned, I went to group today and noticed that the room was empty again. I didn't wait around. I left and drove around for a little, thinking. In the end, I came back just after the group was ending and I ran into another doc that I have worked with and asked him for a no-bull explanation as to what was going on. The doc stared at me, stunned. The look in his eyes told me everything I needed to know but the doc said. He passed away. I found out that Doc Casagrande had passed before the last group session that I had been to and I felt the lights grow dim. My world took on a much more threatening glow.
As I said in my previous post, 'The VA Screwed Up, Big Time.' I was angry and very distraught. My grief was eating me alive. As I have had many times in the past when I have worked with Doc Casagrande, I felt a moment of clarity. The grief is still there and still profound. The fact that I never got the chance to say goodbye, to have closure, will haunt me for quite some time. What that moment of clarity gave me was resolve - to continue to do the work he would have wanted me to in order to make the most of my live. And to make a difference for others. That moment of clarity showed me that, while I was robbed of my right to honor the man after he died, I could live my life - the live he had made possible - in his honor. To live my life as he lived his: with compassion, honesty, integrity, and unflinching resolve to do the right thing.
It is with this in mind that I share with you my vision. I want to take what he has taught me and make a difference for veterans with PTSD. As I move forward with creating my non-profit, I will be needing a physical location. In his honor: It will be named the 'Joseph Casagrande Center'
I ask for your support in making this a reality. Please help me and others that knew him honor his memory and his mission.
This past week has been a whirlwind as I worked to get everything ready for the fundraising campaign to go live. It has been an amazing experience and I have found myself looking at the world from a different perspective. I never realized how fulfilled I would feel as I pushed the envelope to advocate for veterans. I have felt energized and happy, better able to attend to my family, better able to attend to my own needs. I have felt so good this past week that I started to think something must be wrong. Being this happy was alien to me.
And then it hit me. And it hit me HARD. When I was telling my parents about my venture, they were 100% supportive but my mother asked me a very pointed question: "Max, you are overweight. If you are going to be the public face of this organization, you need to look the part." Something so simple. She thought I was going to get upset or feel hurt by her comments.
Nope. Not at all. As a matter of fact, she really made me think. If I am going to fight the stereotype and stigma associated with PTSD, I can't look like a 'sorry-ass dough-boy'. When I sat down and thought about it, I made another realization and it wasn't one I liked. I still hated the guy in the mirror. Despite all of the good I wanted to do, I was still striving to live vicariously through the successes of others.
For the first time, that realization didn't paralyze me. It didn't make me feel less than. It made me disgusted with myself - determined to DO something about it. It was time to Walk the Walk. I have been talking the talk for two years, shying away from holding myself accountable for my inability to take care of myself. I found it was easy to ignore my own deficiencies if I helped other veterans and their loved ones learn to live with PTSD. I can't delude myself anymore. If I am going to be taken seriously, I need to take care of myself and not look like a sloppy 'mess'.
So here's the skinny (pardon the term): I weigh 278.1 pounds. My 'fighting weight' in the army was 234. Today I started living by example. While I have done much to learn to cope with my PTSD, I wasn't able to overcome the feelings of inadequacy to take better care of myself. So no big promises. No grandiose plans. I am going to get in the best shape of my life and I'm going to show you all what grit and determination can do for a veteran with PTSD. Here's how I look now:
Yeah. Doesn't exactly scream "Support My Cause!"
This is the only promise I will make: I will do everything I can to look the part and earn the self-respect I so dearly desire. I WILL WALK THE WALK>>>No update pictures, no stories, no excuses. Just action. I will show you all what I am capable of and take a picture again on April 10th (A few days before the end of my fundraising campaign). All I ask is that you ask yourself. Do I just 'like' comments and say I support a cause or am I willing to walk the walk? Are you willing to spread the word? Are you willing to speak out against the stigmatization our combat veterans with PTSD face? Do you have the ability to donate to worthy causes but don't? What will you do to walk with me?
So, it appears that my therapist's advice really sank in. I woke up yesterday with a clear sense of purpose and a vision of where I wanted my life to go. I decided to conserve my energy at work (yeah, still a work in progress) and devote that conserved energy to my advocacy and my family. I started moving things forward and saw results. Here's what's happening right now:
As I said yesterday, it was an eventful day. I look forward to sharing all of this journey with you! Let's make a difference for each other and for the vets we still n
I was asked to address this issue by folks on the Facebook Page. It is a delicate subject and I wanted to take the time to really think about how I feel about the whole situation, so it took me a few days to write all of this down.
Over the past few years, there has been a very strong push to create an adjunct court system for veterans called the Veterans' Court. Supporters of the concept argue that veterans are not treated equitably by the court system and that the punishments/sentences meted out are much more severe than, in many cases, the crime dictates. They also argue that there are often mitigating circumstances that cause many of these veterans to break the law, PTSD being one of those circumstances. While I agree that veterans aren't currently being treated equitably by the court system, I think that the concept of a separate court system for veterans sets a dangerous and irresponsible precedent. Before punching your computer in anger, let me explain.
Being Singled Out for Stigmatization:
As anyone in the veteran community knows already, veterans with PTSD (and veterans in general) are often stigmatized by the public. It's called the 'Rambo Effect'. The ignorant believe that you and I, as law abiding citizens, are exponentially more likely to go crazy, cause mayhem, and commit mass murder. When you spell it out like that it sounds pretty stupid. If we created a separate court system to address veterans crimes, do you see this stereotype improving or getting worse? How does anyone think that being singled out as different and warranting special treatment helps? For generations, minorities have been getting the short end of the stick in the court system. Do you see any initiatives to create 'Black Court' or 'Latino Court' or 'Gay Court'? All of these minority groups (in this day and age, veterans are an extreme minority) accept, understand and value the court system we have and strive to affect long-term change by changing the system that already exists.
A Crime Is A Crime Is A Crime:
If a veteran with PTSD turns to illicit drugs to numb himself or gets in a heated argument with someone and commits assault and battery, how is this different from anyone else with PTSD doing the same thing? While I understand that, as veterans with PTSD, what we experienced is truly horrible, a bad decision is a bad decision. Don't get me wrong, I am not condemning their actions. I understand how easy it can be to head down that road. The first time I was on prescription pain meds after the PTSD, I almost got hooked. If I would have gone down that road and gotten in trouble for abusing prescription medication or worse, who do I have to blame for that? Me. No one else. Just me. I don't think it's a good idea to create a system that would unintentionally encourage a lack of accountability. I have heard veterans say, "It wasn't me, it's the PTSD", completely deflecting blame for undesirable behavior off on their disorder. Creating this system would encourage this.
So, If Not Veterans' Courts, Then WHAT?
From my experience with vets who have gone through the court system, it seems that veterans get held to a higher standard of conduct than the average citizen. It the curse of honor and duty. Do we not hold ourselves to a higher standard than civilians? If a civilian and a veteran pulled a punk move and hit their respective wives, which one would you be angrier with? Which one would YOU hold to a higher standard? I know I would hold the veteran to a higher standard, fair or not. So, what is the solution?
EDUCATION. Plain and simple. All of these lawyers espousing the creation of the veterans' court could be spending all of that time and effort educating other lawyers (especially public defenders about the issues facing veterans - especially PTSD). If the argument is made that a veteran has a service connected diagnosis of PTSD or related behavioral disorder is not fit to stand trial but should be sentenced to court mandated medical treatment, how many veterans' lives would be irrevocably changed for the better? Veterans are notoriously bad about not keeping to their treatment regimens. I should know.
What I am saying is that veterans with behavioral disorders should be afforded the opportunity to get treatment first, before they are thrown in jail. Jail is a really bad place for someone with untreated combat PTSD, for obvious reasons. That being said, if a veteran IS afforded the opportunity to get medical treatment, is deemed fit and released from care, any further violations of the law should be treated like anyone else.
Now we just need subject matter experts to stand up and educate. We need those same experts to testify at trials. The argument shouldn't be about the severity of the punishment meted out, it should be about whether these veterans are competent to stand trial in the first place. God knows, before I started getting treatment for my PTSD, I sure as hell wasn't.
Introspection...Ally or Enemy? It's a question I have been asking myself a lot over the past few days. It seems that every time I have too much time on my hands to sit and think, I get evaluate everything that's going on in my life. I look at my home life, my work life, being a husband, being a dad. I examine every facet of my life, ad nauseum. In some cases, in excruciatingly fine detail.
I have to wonder how healthy this is for a person like me to do. I seem to get less and less out of it the longer I look. While, I know that there is a lot that makes me very happy in my life, there is also a lot that has left a very bitter taste in my mouth. I wonder if I will ever be able to realize my full potential, and sitting on my duff recuperating from a physical health issue doesn't lend itself to feeling positive about what the future holds.
What I have begun to realize is that I desperately need more out of my professional life - and soon. I think about all of the things I could be doing with my time to advocate for changes in behavioral health care, to educate people about PTSD, to work to reduce the stigma associated with PTSD. It makes me sick to my stomach that I am spending my time in customer service in a grocery store. It's depressing and demotivating. I am an accomplished speaker, an even better writer. Yet, here I sit, wondering how I got myself stuck where I am. I constantly think about hunting for work in Veteran Advocacy. I look online all of the time. I think about the good I could be doing and I feel trapped by the need to make a living to support my family, unable to get out from under the thumb of crap wages and a shitty economy.
Yep, that's introspection for you. It allows me to make important realizations - realizations about things I need to change in my life. Yet, when I am in a position where I don't get to choose when the introspection ends, I get caught in the quagmire of depression and catastrophic thinking. I am on pain meds, so I can't drive anywhere, I can't work. I am stuck here at home with one of two options: sleep or think too much.
So I sit here and think. And contemplate the edges of a sword that never get dull from overuse.
This is the danger of isolation for veterans with PTSD. It suffocates our will, douses the flame of hope. Too much introspection is not a good thing. It's like painting yourself into a corner, with no one around to notice you have until the last stroke has already been painted.
Boy was that a depressing trip. I think I need to make sure that I get to CPT group tomorrow, despite my inability to drive myself. I need something to shake the cobwebs loose, something to turn my sight outward. I need to focus on getting a hold on the depression as it sinks its claws ever deeper into my psyche. I need to focus on my wife and my daughter, how much they need me to be here for them. I'll find a way, I always do. I think I just needed to get those poisonous thoughts out of my head. To rattle those insidious doubts from their nesting places in my mind.
I know I can make it until tomorrow, and that's all that truly matters when the going gets rough.
What do you do when you realize that everything you have been doing for free (advocating for veterans and educating civilians) is something that you'd like to do as a career?
I can tell you this, while it doesn't take away from the fulfillment I find in helping veterans and their loved ones, it does motivate me to find ways to make my dream job a reality. In recent months, so much has happened that has drawn a lot of attention to the deficiencies in our behavioral health system. I hear and read about all of these so-called experts talking about how we need to fix the system and they all agree: we need to add more layers of bureaucracy and research. Remind me again, how does this help? When are organizations going to start listening to the ideas of the people they are designed to help?
Our behavioral health system is out of date and out of touch with the realities of today's population. I have looked around. Unless you have a substance abuse problem, it is almost impossible to find real-world peer to peer support groups.
I have a strong desire to change this and have some ideas on how to affect positive change. I do need to consult with some folks about some certain subjects and would appreciate any advice that people could give me. Here's what I need:
I am sure there will be more down the line, but right now, I am interested in gaining feedback from people with these areas of expertise so that I can perform a feasibility study for an idea that I have. If you know anyone who may fit this criteria who may be interested in finding out more, please have them contact me through the website! I have tomorrow off, so I will be spending some downtime with my family. A little decompression before starting a new gig at work is always a good idea. I plan on writing some more of my next installment of my serial novel. It always seems to clear my head. Have a good weekend, everyone!
Again, the true and enduring cost of war illustrates how little politicians thought about the long-term ramifications of a decade of war. These young men and women that took their lives survived unspeakable horrors overseas, TBI, other related injuries. As a nation we have let them down. The VA continues to struggle, in an outmoded business model, understaffed and underfunded. The practitioners in the VA healthcare system are left with little option but to show compassion and do the best they know how, given extreme limitations on time and resources.
The DOD says that they have instituted successful programs to improve education, behavioral health services and access, and service member resiliency. Go ahead folks, pat yourselves on the back. Your programs have been so 'successful' that the suicide rate in the military jumped 16%. Great job.
Then there's the other, more disturbing statistic: According to the IAVA, the VA estimates that 18 veterans take their lives DAILY. All the while, the useless bureaucrats at the VA are tilting at windmills and spending millions of dollars on pipe dreams and long shot research while ignoring the major problem the VA encounters on a daily basis - too many administrators, not enough caregivers.
The concerted efforts of the DOD and the VA are equivalent to putting a band-aid on a sucking chest wound. While some can justifiably argue that the increasing suicide rate amongst active service members is a result of ten years of conflict, how do they justify the fact that they provide no support network for recently separated veterans who are in distress? Does anyone think it's a coincidence that veterans with behavioral issues like PTSD, Acute Anxiety, and Depression don't come forward for help? Most of the time veterans return to uneducated family members that don't understand what the veteran is going through. Some take the time to understand their veteran. Many don't and chalk up the changes as their veteran being an ass or a 'pussy'. This ends up isolating our veterans without a support network with many holing themselves up in their homes and only having contact with the outside world through the internet. The more they withdraw, the more time they have to get too far into their own heads. They want to come forward to get help, but are fearful of the stigma they think they will face coming forward.
It's time to change this conversation and put pressure on our politicians, business leader, and everyday citizens to demand they step forward to care for the 1% willing to protect and ensure everyone else's freedoms. The state of the behavioral health care system in the country is a disgrace. The infrastructure is archaic and outmoded, unable to reach the people who need their help the most. The conversation we should be having: How do we change the system to best reach those that are at risk and isolated? No one hears a cry for help in a shuttered room.
I implore you. Share this message with everyone you know. Send a copy to your Congressman, your Senator. Stand up and be heard, stand up in solidarity so that we can end this epidemic.
Yours in Health,
As I continue my life with PTSD, I will share my challenges and discoveries on this blog.