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!!!

Defeat...Maybe Not

It's been awhile since I've sat down to write. It's not that I haven't been able to, I simply haven't wanted to. I've been, as my wife puts it, "in the bell jar." I few weeks ago I was forced to resign from my job. That left me questioning what I was doing with my life. Where do I go from here? I spent so much time and energy fighting to get back to work as a paramedic, I never stopped to plan for what happens if I have to stop...In a sense, I have been defeated. I'm in a holding pattern, waiting on a socket to make its way from Germany to Kentucky. Due to an allergic reaction I am stuck only wearing my leg for a few hours a day. When I take it off, I'm covered in hives on my stump...needless to say this is a little more than uncomfortable. I'm hoping that the new socket will be here sometime this week and I'll be able to start looking for gainful employment again. I am not meant to sit at home, but that leaves the question...what do I do? I long to be in an ambulance, so I need to find a way to still make runs, but have the time I need to heal when it's necessary. A lofty goal indeed.

Thanks to the generosity of family and friends we've been able to pay our bills for another month. The sudden loss of income couldn't have struck at a worse time. Here we are in the holiday season and we're starting from well behind where we should be. I'm determined that I will do whatever necessary to rise up from this again. I fought my way back to the ambulance, against the odds some might say. So why not apply that same determination to finding a job that allows me to fulfill my goals with my physical realizations.

I want to end tonight by thanking you all. You have all supported me throughout this rollercoaster life over the past year. Kate and I have been wrought with ups and downs throughout all of this. I was given the advice once that "you know you're doing the right thing if every step you take you have to fight for it." Well, we are fighting once again. I promise, I will find whatever lesson there is to be learned from this latest pitfall and come out stronger than I was.

Until then, thank you for your support and if you know of anyone in need of the uneven point of view a one legged medic could bring let me know.

Unemployment and Dante's Inferno

I've been contemplating the beginning of Dante's Inferno quite a lot lately. You see, in the beginning of the Divine Comedy Dante finds him self trudging along life's path to suddenly realize he's lost in a "yellow wood." Lost and alone he comes across a leopard, a lion, and a she-wolf. After all these trials he is rewarded with a guided tour though Hell.

And here I am...I find myself for the first time in a year to be unemployed (more than I can get into at this time). I am Dante, only I faced the beasts to get where I was, and now I find myself lost in a Yellow Wood.

I'm faced with the terrifying aspect of not being a "traditional" paramedic. I haven't allowed myself to entertain this thought since I made the decision to have my amputation. It has sent my entire life into a tailspin. Not only my life, but honestly my family's life as well. I find myself constantly asking myself "now what?" sadly, I can't answer that. I could return to college and try a different degree...but what in. This is all I know. This is what I'm good at; it's where I feel I belong. I ache for the speed and bright lights. I'm at my best when others are at their worst...that doesn't really translate into a 9-5 office setting.

That being said, I have to weigh the option that I may have to move on. I just don't know where or how at this point. I've thought about becoming a prosthetist, making prosthetics for others, but that is a long tedious process. Honestly, I just don't know. I'm not sure...this is a feeling I don't know what to do with. So here I am...lost wondering in dark yellow wood, just waiting for my Virgil to be my guide and show me the way out.

Optimism for Activism

As the high from Medicine X comes crashing down I am left with an unbridled spirit of optimism. An optimism that the lofty goals set out by a few can be accomplished to help the many. Most of us never think about what would happen if we were to come down with a catastrophic illness or suffer through a debilitating injury. The problem is that this happens daily. There are roughly 185,000 new amputations each year in the US, that breaks down to roughly 5 people out of 1000. Go to a any professional sports game, there are roughly 25,000 in the crowd, that equals 25 of those people gaining new amputations for various injuries. The issue we have is that if you're unlucky enough to be one of these 25 people and live in one of the 30 states that does not offer prosthetic fairness then you should be prepared for an uphill battle. I know because I fought this battle. Amazingly, I fought this battle and won. I won because I had the power of social media behind me. For those who are new to my blog a brief synopsis. I was denied my prosthetic by an insurance company who does not cover microprocessor knees. After blogging here about my plight, the readers and my brothers and sisters in public safety took to my fight. Together we fought against the insurance juggernaut and forced a change in rhetoric. I am odd in this...sadly, this is not the normal way these stories pan out. No...the way this story normally ends is that the amputee is given a substandard knee that allows them to "function." A word I have come to hate. Function...to me this word says that it will work, but barely. If you had a car that just functioned then you'd probably look for a better car, one that not only functions but has the bells and whistles you need to enjoy your ride. So, why wouldn't you want that with something as vital as a prosthetic. No functioning doesn't lend itself to living.

If you look at most insurance protocols for prosthetics you would see that they lump them in the same category as bedside commodes and crutches; they call it "durable medical equipment." Most cap the spending on these items at $2,000, sometimes more, sometimes less. If you're lucky your insurance company will cover a prosthetic but limit you to two for a lifetime. If you have a child who happens to suffer an amputation, depending on age, they could need 10 times the approved amount. This is unacceptable.

Now, lets counter this with a state with prosthetic fairness. Your physician writes you a prescription for a prosthetic that matches your activity level. You get that prosthetic. It's as simple as that...well there will be hoops to jump through. You have to prove why this prosthetic will benefit your life. Trust me. It will and it's easy to prove.

I know. It's not free. It will take some input from everyone. In Kentucky, we looked at the financial impact such a bill would have on the taxpayer. In Kentucky, it would equal out to somewhere between 5-8 cents per person. A negligible increase on your premium.

Now, my goal is not only get this passed in my state, but to get this into the national spotlight. This needs to be passed nationally. We need to come together and push. Call your Senator, Call your Representative, Be proactive...and as I learned at Stanford...Stories change things. Patient stories will be the shoulders that carry this bill. Our voices will be heard, our voices can change the world...

Until next time.

PM

Medicine X...A world of Changes sparked by a new idea!-

I've been home for a few days now. Slowly, I'm making my way back into my normal life...but that's the difference. It's not my normal life. Something changed. I discovered a passion, a spark, that I did not know I was capable of. I have called myself an "accidental activist," I quite literally fell into standing up for others in my position. I didn't not plan on taking this path, and I acted as such. I wrote my blog, I spoke out when I could, I did what I could when it was possible to work that into my schedule. In Palo Alto, California I discovered that I need to me much more active. As I wrote before, I was most taken aback by being included in the same company as these titans of advocacy. I still can't believe my name could be brought up in such company.

These were not the only lessons learned. I gained a new respect for "Participatory Medicine." The thought that a patient can be, and should be, the expert of their own care. This education often comes at the patient's own expense. Not only through personal expense, but mental anguish, personal strife, and in the best of cases personal triumph. Triumph was what I heard most while at medicine X. Patients of all socioeconomic backgrounds, encompassing a myriad of chronic illnesses. These people are more than survivors. Surviving lends itself to barely making it through. No, these amazing advocates are truly living, not in spite of their illness, but in conjunction with it. Then I had an epiphany. Amputees ARE chronic patients. When looked at through the traditional sense, a chronic illness is just that. An illness that doesn't go away, often with increasing complications as time goes on and no currently known cure. As an amputee, there is obviously no cure, the only difference is I wear my medicine. My medication is my ability to interact with the world, I display it proudly, a badge of honor that I am not a survivor, but I am living.

I was able to interact and network with some amazing physicians, leaders of industry, and various other caretakers. Hearing of amazing innovations, new viewpoints of the patient/physician interaction, and ways to track your own healthcare data. What I enjoyed most about Medicine X was that the patient was front and center. We held a prominent place at the front of the room, able to directly interact with the various speakers and presentations. Every aspect was to show the importance of the viewpoint of the patient. Increasing awareness of the various chronic illnesses, but not actually focusing on the illness itself. No, for the first time in my medical career, the patient was more than their respective ailment. We were once again people, our ailments only a portion of who we are, fully integrated into our lives, but not dominating it. The way the healthcare experience should be...the way Medicine X convinced me it could be with the right education.

I'll have more later, I'm still digesting the massive amount of information.

Until Next Time...PM