Yes It's Painful; but It's Worth It

Fear. Fear is a commonality among all us carbon based lifeforms with a sentient brain. Tonight I have been writing on my (hopefully soon to be done and released) book. I started remembering when I first started having the nightmares associated with PTSD and could feel the fear start to build up inside me. As the fear built, I had a flashback of some sage advice Kate gave to me after I woke her up thrashing my way through another nightmare. Here's is an excerpt from this section of the book. I thought it was appropriate for you guys to read.

{It was during these moments of doubt that I first started having flashbacks of my fall and the subsequent hours afterwards. I would have flashes of memory, hear myself begging Kate not to let them amputate my leg. Flash again, and I can feel the splash of the cold spray of water ricocheting off of the rocks at the bottom of the falls, I look down to see my mangled appendage and start to feel the burn in my ankle where the skin had burst open with the rotational force of my toes spinning 180º to where my heel once held residence. Then as quickly as they started, they would end. Leaving me in a panic; sweating, heart racing, trying desperately  to catch my breath that is just out of reach. This only concreted my doubts in my mind. I begged to keep it; now I want them to remove it? It doesn't make sense. As I am going down this rabbit hole of doubt and despair, Kate would anchor me back into the real world. The most poignant moment took place late one night; close to New Years. We were both sound asleep when I found myself grasping that branch; dangling off the edge of the waterfall. I look to see Chase's face and terror written on it. Without warning the branch gives way and I wake up in a cold sweat, my fight or flight senses running overtime attempting to take control of a situation that occurred months prior. I woke Kate up with my thrashing. This had become common place as my mind attempted to stitch together the events I had unconsciously blocked out. She whispered softly to me that I was O.K. It was a dream, and I am safe at home. She asked me why I thought I started having these panic attacks after meeting with Dr Ross, and I had no answer for her. She continued on to tell me of some of her worse days in Baghdad, Iraq. Kate is a sufferer of PTSD as well. She lived the life that most people will never experience, and that is a blessing. We had told each other our horrific stories of patients we have cared for, but this was different. It was a different level of intimacy that I wasn't prepared for. She told me that the reason I'm suffering from these attacks now is because there is an end to my suffering in sight. In order to prepare for the closing call of this unfortunate act in the play of my life, my brain had to get the events in order. Yes, it's going to be painful, but it is going to be worth it.}

That last line. That is some of the most concrete truths that I have ever had told to me. Life is painful (at times), but it is worth it. Anything I have ever decided to do, if it was going to be worthwhile, it was a fight to achieve. Becoming a paramedic was painful; aside from the seemingly unending clinicals and ride time; during that time my marriage ended, my son was taken hundreds of miles away from me, and I felt like I had hit rock bottom. Yet, looking back, the decision to become a medic led to that marriages end, which led to Kate being in my life. It was painful, but it was worth it. 

I can say the same about becoming an amputee. This has been the single most terrifying time in my life. I have lived years in uncertainty. I have dealt with setback after setback. I have lost so much...and I would do it all again. I lost my leg and gained my meaning in this life. I am meant to serve as an example, an advocate, or as the fine people at Stanford dubbed me "persistently disruptive but in a good way." I lost a part of my body in order to gain a better understanding of what it means to be a patient. I have treated thousands of people in my career, but I had never taken into consideration what it meant to be a patient. Now, I have a profound respect for the "other side" of medicine. The fear, the doubt, the anguish of the unknown. Yet I know now that It is going to be painful; but it is going to be worth it!

The words I hate

Can't. Can Not. Impossible. Not feasible. Unlikely. These are all words that as an amputee I have grown to hate. Once you have a limb removed society has an entire list of things that you "can't" do. Ask an amputee, I assure you they have a list of things they can no longer do. Not because they don't want to, but because it has been told to them that they can't.

I bring this up because I've been doing a lot of research on the upcoming Paralympic Games. I'm lucky enough to know a dual paralympian; she is an olympic rower (who won the bronze medal) and this March, competing in the biathlon in Sochi. She is also a bilateral above knee amputee. Can't isn't in her vocabulary. Luckily for her, it wasn't in her families dictionary either. This is the difference maker. Do the people you surround yourself with fill you with doubt or with support? I've been blessed enough to have an army of supporters. I was also raised to believe that anything was possible. My stepfather beat the phrase "Can't never could no nothing" into my head. Aside from giving you grammer nazi's a heart attack, it meant that if I said I can't do something, it just meant it was hard and I didn't want to. Like Yoda said, Do or Do Not, there is no try. That has become part of my core philosophy. I have realized that being an amputee just requires me to take alternate paths to the same goals. It may take me longer, I may have set backs, and I will get frustrated. That's allowed, you can get upset, you can get mad, you can throw a pity party and wonder why me?, but quitting is not an option. Have your moment, then dust off and get back to work.

This is where I am at now, I've had my set backs, I'm ready to dust off and get back to work. With my new socket finally being framed, and set to be delivered, I have a new breath of air. I'm hopeful for the future. I'm not sure where I will land, I'm not sure what I'm going to do, but that's the exciting part. I have an open road ahead and with Kate and the kids by my side I'm ready for a new adventure to begin.

I want your leg...how much?

Life as an amputee can be perplexing. Aside from the things you would expect to be challenging; learning to walk again, gaining balance, learning to fall, stairs....there are other parts of this lifestyle that just confuse me. 

Case in point; when it comes time for me to get a new prosthetic device I have to work my way through a ballet of hoops and red tape. It's not as simple as my physician saying "Joe needs this prosthetic in order to live the life he is accustomed too." No! Instead we submit to my insurance company which prosthetic I need. They will either 1.)reject it outright and say I have to choose a prosthetic from their list of approved devices; 2.) Offer to pay a very minimal amount towards said prosthetic and leave me to cover the rest; or 3.) Stall. 

These are the tactics I am up against each time I try to get a new leg or foot. I've faced this recently. I was attempting to get a microprocessor controlled foot that would mimic the effect of having a functional ankle...I got approved for the foot. The problem was, they weren't willing to pay their share. They wanted to pay much less than my coverage provided. This leaves me once again fighting the appeal process, this time, I chose not to fight. I let this battle go...many times amputees are forced to make these choices. I have learned the lesson of when to fight and when to back down...pick your battles indeed. 

Why am I going on and on about how difficult it is to get an appropriate prosthetic? What does this have to do with you? I'm glad you asked...but first a few more questions to post to you. How much is it worth to you to be able to walk? How much money would it take for you to give up that ability? What about the ability to pick up silverware? How much is that worth? The reason I ask is because this is the reality of thousands of amputees in the United States. Amputees who could benefit from the technology available, but just not available to them. 

I ask all these things to emphasize the importance of a petition I just posted to www.Change.org 

All I am asking is for you to sign this petition, to get the attention of the President and Congress, to have them realize that Americans are suffering and it is pointless. Please sign the petition to pass a National Insurance Fairness Act for Amputees. 

Here is the Link

http://www.change.org/petitions/president-of-the-united-states-and-u-s-senate-and-u-s-house-of-representatives-pass-insurance-fairness-for-amputees-nationally?share_id=bYYcmiomFP&utm_campaign=share_button_action_box&utm_medium=facebook&utm_source=share_petition

I'm Back

I'm finally back online. The last time I was able to sit down and write on this blog I was in a very dark place. My depression and PTSD had been the worse it has been since I had my injury. To be honest, I wanted to quit. For the first time in a very long time I wished I hadn't gotten back up. Luckily, life has a way of showing you the real important things in life. The night after I had wrote the last blog post here, I was sent a message by a new amputee that I had spoke to right after her amputation. She reminded me of the words I had said to her a few months ago..."I'm not saying its going to be easy, if fact, it will be the hardest thing you will ever do...what I am saying is that it is not the end of your life. It's worth it." Having those words return to me, along with the love and support of my family and friends, has helped drag me out of my pit of despair. I'm not back to where I want to be. I'm still working on finding out who I am now. I am mourning the loss of who I used to be...thanks to some therapy I realized that I haven't done that yet. The beautiful part is...I finally feel like I am healing. 2 Years after my last surgery, I can honestly say my physical wounds are now just scars, but my mental wounds are finally on the mend.

I'll be clear, we are still in quite the financial bind. I want to return to work, I just have to find out where that will be and in what capacity. I'm still looking. I will find it.


On to some more positive news. I have been accepted back to Stanford Medicine X. This year I will be going as a presenter and I will be giving an Ignite! style speech. (If your not familiar, an Ignite format speech is a concise 5 minute presentation set to 20 slides that boost your message). You can find the ignite speeches from past presenters at Medicine X by searching YouTube for Medicine X.

As I continue to grow and heal, I can only hope that I can spread the message I am trying to live. I am an amputee. I am also a father, husband, son, friend, paramedic, the list continues on. My lack of a leg is part of who I am. I know I speak about it a lot...but it does not define me. What defines me is how many times I get back up...Fall down 9 times...get up 10.

Until next time.

PM

Inside the Bell Jar

I decided when I started this blog I would not only chronicle my triumphs but also my defeats. Tonight will be the latter I'm afraid. 

Let me start with this. There is a certain stigma attached to mental health in America, yet an untold amount of us suffer from some sort of mental illness. We are quick to judge those who have a mental disease, saying that they should "just get over it," "Have you tried to just get up and decide to stop being [fill in your choice of mental ailment here], and the like. This is wholly unacceptable. Would you ever conceive asking a person with a the flu (an ailment that we all suffer from eventually) to "just get over it," or a person with cancer to decide to not have cancer anymore...that is how ridiculous we as a society need to see the stigma associated with depression, PTSD, bipolar disorder, and the like. 

I have been battling depression since I started having the issues with my prosthetic. I began to feel handicapped for the first time since losing my leg. These feelings started building with the loss of my job and the impending holidays. The feeling of not being able to provide for my family, and relying on others to ensure that my children had a wonderful Christmas. Don't get me wrong, I am thankful for my friends and family that helped us provide a wonderful holiday for our boys, we were able to give them a very Merry Christmas and continue the illusion that nothing is different. We have made it our goal, as I believe my family did when I was young, to never have our boys feel like they are "poor." When I was growing up I had no idea that we lived in a "poor" area in West Virginia, we had food on the table and I never needed anything. I want to ensure that my children have this and more. 

While searching for jobs I came to a realization. The way I see myself, and as I have come to realize, the way most people in public safety and medicine is directly tied into our job title. I am a Paramedic, Kate is a Combat Medic/EMT, John Smith is a Police officer, etc....We are so entwined with our profession that we cannot disconnect ourselves from it. So...What happens when that disconnect is forced? How do you sort through what is left and find out who you are without your title.? This is where I am currently. I am still holding out hope that I can return to work as a Paramedic, hopefully as a flight medic (which I believe would be much more challenging mentally, but a little less physically tasking). Yet, I am mourning the loss of my identity. I focused so much on returning to work as a medic, that I never considered how to cope with the day that I cannot return to work as a medic. Don't get me wrong, I'm not giving up on my goals, I'm just faced with the reality that even if I was a healthy bipedal Paramedic, there comes a day when EMS is no longer an option. 

This leads me to the early hours of Thursday morning. The past week or so I have been in the throws of a full blown PTSD/Depression downward spiral. It got to the point that Kate was worried about me, being honest, I'm not suicidal by any means, I just felt as if I was drowning. I couldn't get up, I haven't wanted to do...well anything. After some coaxing by Kate and Janelle (for those who have been reading for awhile, Janelle was the paramedic I did my ride time with when I first started back as a medic). They convinced me that I have had some personality changes and they were very worried about me. I checked myself into the ER to be evaluated and set up with a therapist. The difficulty in being well known in the Emergency Field in a relatively small city is that you know most of the people that work in the Emergency Departments. This was no exception, making it harder to walk in and admit that I have a problem (knowing the stigma attached to mental health). 

Today, I took my first steps towards fixing myself. I went and spoke with the therapist they recommended. I feel the same as I did a few days ago, but I am going to try to fix these problems inside of my head. I urge you, especially those reading this in EMS who are kept up with the nightmares and constant thoughts of "It's my fault, I could have done this or that better", or just those runs that you can't let go of, go talk to someone. There are options. A study was recently posted on facebook showing that Paramedics and EMTs suffer from PTSD in drastic numbers and do not seek help. I'm guilty of this, we are told to suck it up and move on. Clean your truck, get your gear ready, and go on the next run, no matter how traumatic the run before was. Don't be afraid to use the resources available to you, you have options. Talk to someone. 

I'm still "in the bell jar" as my wife puts it. My job prospects aren't panning out, and I'm not sure how we are going to make it, but we will. I have always been told that when you hit rock bottom, it's a great place to build a foundation...I just didn't realize that sometimes life wants you to build a basement as well....

This has been one of the hardest posts for me to write. If it's rambling I apologize, honestly, I just had to get this out of my head and onto paper. I hope it helps someone out there...I'll post updates as I continue on this new journey. 

PM

2014 Confusion

I'm confused...those that know me know that this isn't necessarily a new onset of confusion, but a long drawn out process that seems to be exacerbated by my unemployment. Here is my dilemma. I'm about to turn 32 years old, and I still don't know what I want to be when I grow up. I have all these grand dreams, but have no idea how to start making them come to fruition. I want to be a paramedic, but I have come to realize that this is only a short term solution to a long term problem. While I am physically capable of performing the tasks required of me right now...I'm not sure I can continue in this line of work for another 20 years. EMS is a profession where, even with a perfectly healthy body, lasting an entire career without a crippling injury has become an oddity. The rising use of emergency rooms as personal physicians has placed an overwhelming burden on an already strained system, resulting in a physical demand on the street level emt/paramedic that cannot be maintained.

This leaves me with my dreams. I hope that I can turn these into a reality. I am trying to figure out how to start a career as a motivational speaker (although I hate that term). I want to spread the message to anyone who will listen that debilitating injuries and chronic illnesses are not the death sentence they appear to be. If I have learned anything from my amputation, and the amazing people I have met as a result, is that the only limits you have are those you place on yourself. I have realized while searching for a new full time job, that I get extremely offended when people place limitations on me due to my prosthetic. Recently, I was speaking to a friend about a job, one that requires walking on uneven terrain, sometimes for long distances, and immediately was greeted by the chorus of "you can't do that, you need another option, etc..."

I am going to make this a short post tonight. I plan on getting back into writing on this blog more, one of my many resolutions for the year.

Until next time...
PM

Ups and Downs

I've had some amazing highs and lows over the past few weeks since we spoke last. I was lucky enough to be chosen as an Stanford Medicine X ePatient Honor Scholar. I love that I was described as being "persistently disruptive yet positive advocate." Medicine X was life changing, it rocked me to my core and galvanized my resolve to be a difference maker in the world of healthcare, not just for amputees, but for everyone. I was then asked to take part in a Google Hangout discussing my time at Medicine X and the lessons learned there. You can see the video here MedX Live Hangout

Now some of the lows I've experienced. Many of you know I have had a dream of becoming a flight medic well before my accident, I have wanted to fly. I had the opportunity to interview with a very prestigious flight service, and although my interview went extremely well, I was passed over for another medic who had years of flight experience. I can't blame them for their decision. I know, being a manager once before, I would have made the same decision. I remain unemployed for the Christmas season, and there's the kicker. How do you make sure your kids have a wonderful Christmas, pay your bills, and still have enough for the other little essentials like food and gas...that's where we are now. Kate is working, but without my income to help, I feel like I'm trying to dig a hole in the sand, the deeper I get the more sand pours in from the top. We've been blessed to have our family help us and keep us at least treading water, but I feel like I'm sinking and just want to fix it...I hope to have this solved by the new year. I've always been the eternal optimist and continue to be so; I know things look bleak but that's just today, I will have another opportunity to use my talents, I just have to find the right fit.

I'm still waiting on my socket from Otto Bock...you know the one I was supposed to have months ago so I can stop having these hives break out on my leg everytime I put my prosthetic on...yeah that one...I'm told it has made it to the US, in fact it is in Minnesota at Otto Bock HQ...now they are holding it up in order to build the frame there. My prosthetist has asked that it be sent to his office so he can make the frame himself, which would be done quicker than how they are doing it. I'm just stuck...waiting....I've lost a job, I can only wear this amazing piece of technology a few hours a day before it becomes too painful...I'm just in this holding pattern. So I wait...

While I wait I start to write, I've been trying to take time here and there to jot down this journey that I've been on, in a little deeper detail than I have here, looking back at the experiences that have shaped me into the person I am, and the dreams I have for where I will go from here. To start, I've applied for Stanford Medicine X again this year, only instead of just going as a blogger, I have applied to go as a presenter. Last year the Ignite speeches, from some of the other patients at the conference, were some of the most powerful experiences of my life. I want to be a part of that. I want to get out and speak out about my story and about the Medical Injustice of the Prosthetic Industry...namely the insurance industry. How much would you pay for your leg? Your arm? Your ability to walk, or pick up your child, or just simply stand up...how much is that worth to you? Now, realize that the prosthetic that could change your life, is lumped into the category of "Durable Medical Equipment" a category that also houses bedside commodes and wheelchairs. Then realize that most insurance agencies only pay $2000 for a lifetime or will only pay for one prosthetic per lifetime. I want to change this. I want parity for everyone, not just Kentucky, everyone. This is where I am headed. This is my goal now. I want to remain a paramedic, and I hope I can go fly, but I want it to be my means to an end...the end being a change in how we view amputees as a society and how we let money decide what limb is best.



Do you want to have the Stanford Medicine X experience? Do you have an idea on how to change healthcare? Are you an active participant in your care? If you can answer yes to any of these you should apply for an ePatient Scholarship to attend Stanford Medicine X 2014...but hurry the application deadline is January 10th

Apply to attend Medicine X here...Tell em the Prosthetic Medic Sent Ya!!!