The Death of Hope

Sometimes, I forget that major projects take a long time. I've been working on a book about disability and it turned into the hardest of all slogs. 40 pages took me a couple of weeks and I know that I repeated myself too much in that short span. It seems that I was trying to avoid offering advice that was too specific to me forgetting that personal anecdotes might be the best thing I have to offer. It was going slow already when bad things started happening one after another.

First off, we had a couple weeks of drenching rain. Rain equals pain and it feels oppressive. There was a sudden shift from rain to cold with the additional unpleasantness involved and then I hit the misery jackpot. Somehow, the pain doc's office and I combined to cost me eight days of extreme symptom spikes. There was no sleep to be had and the lack of sleep just collapsed all of my other defenses. By the end, I twitched for days straight even if you don't count the car ride to the pain doc at the end. The very end was its own sort of awful with all four limbs, my neck, my back, my stomach and I lost much control of my arms and legs. It was exciting to walk around the doctor's office while my knees refused to do what they were supposed to do. My cane was just as ineffective since I couldn't depend on my arm to stay still.

Just as I was starting to recover from that disaster on Tuesday morning, Election Day happened. For some reason I hope I'll never understand, most people stayed home and did not vote. I am not sure if the voter suppression campaigns worked or if people were just too lazy. While the majority stayed home, a minority of eligible voters joined the right wing in a suicide pact. With all the problems going on in the world, the majority of those who voted chose candidates who have devoted themselves to making things worse. This isn't all partisan complaining because President Obama is seeking to complete "Free Trade Agreements" that will benefit no one but the very rich. Without Senate Democrats blocking the Trans-Pacific Partnership, it will pass easily since the President is not the liberal that some accuse him of being.

Our few industries with strong management/labor cooperation will be exposed to tactics like "dumping" which is defined as selling products on the global market at below cost. Nations like China and South Korea can afford to absorb the losses in their government back or government owned industries while our domestic industries have no such backing. They cannot even count on a Republican Congress to pass punitive tariffs.

Maybe you hate labor unions. The "Fouled-Up" Trade Agreements will hurt all American consumers as the profits of multinational corporations will be protected over consumer rights. For example, the US Food and Drug Administration made a rule requiring all meat sold in US grocery stores to have labels telling you where the animal was raised, where it was slaughtered and where it was packaged. Without labeling practices like these, our FDA will be rendered meaningless. Mexican and Canadian meat-packers appealed to global trade organizations claiming that country of origin labeling would hurt their profits. Why did they believe Americans would buy meat based on local origin despite the price advantages enjoyed by multinational companies? All things being equal, food bought closer to home is higher quality regardless of origin. It may travel safely but it does not travel well. Of course, all else is not equal and even our under funded FDA makes local mass market food safer than what is made in other nations.

The only things that will get done under this next Congress will be bad things. There is the Foul Trade Agreement and then there is the Keystone XL pipeline which will make some of the world's dirtiest oil profitable. With climate change denier James Inhofe chairing the Senate's most powerful environmental committee, those of us who care about the environment might remember the days of "Drill, baby. Drill!" fondly. The profits from the Canadian tar sands oil that will not be sold on American markets will stay in Canada. I like our neighbors to the north but this is absurd. We're risking horrific spills from a company cited by the Canadian government for poor manufacturing practices and we will gain nothing in the best case scenario. The worst case scenario will poison water used by millions, unleash fires that will be made worse by the accelerated climate change.

Right now, you're probably asking me why my pain blog has been overrun by politics. The reason is that my nation's suicide pact is very stressful for me. So long as I remain in Delaware, I'll escape the worst of it personally. Hope for a better world is one of those things I cling to that keep me alive. I have been holding out hope that some agency out there would help me with some of my specific problems. Since I can't walk to the dumpster, I had hopes of the Federal Government restoring aid to the states. I had some slight hope that my state or local government would provide me with some assistance in getting curbside trash pickup which would save me from eventual unpleasantness even if you include nothing unforeseen. I would have liked to get mail delivered to my door as well.

Thank you, Republican voters. Thanks to you, there is a good chance that I will die in a fire someday. Every single one of you has hurt me individually along with your attack on the nation as a whole. Some of you will be very rich at the expense of hurting millions. The rest of you will have to suffer through the fall of society with me. You're right that this election probably won't lead to the death of the government but we've lost yet another chance to make things right. Thanks a lot. The good news is that I can swim.

Worth the Pain

I've been playing a game called "Galaxy Online II" for a while without getting very far. Since the average Facebook gamer loves nothing more than to savage you average newbie who is just starting out. I had been suffering technical issues for a while so I asked the dreaded potentially stupid question. I never feared stupid questions in school. In fact, I didn't start fearing them until the time when I started fearing so many other things. I started fearing stupid questions when I lost a significant portion of my ability to think. At some point, I went from my extremely precocious beginnings to a point that was comparatively shy.

Sometimes, asking questions leads to the right answers. Even better, the right people answer them sometimes. I was recruited into the 805 corps which is the term this game uses for alliance and it has been great fun. The more powerful players have given me jumps in the tech department that would have required very long waits and/or spending real money. It was a lot of fun chatting with members of the 805 Corps during the inevitable waits to complete research.

Each day since I met these guys, I've been hit hard by pain. I've been working on the book with the working title, "The Ability to Live with Disability." Between the energy spent playing the game and working on the book, I'm exhausted much of the time. My core, as they call your middle today, has been twitching harder and harder as I get tired. It's one of Madeline's favorite targets when she wants something because I've been doing the equivalent of dozens of crunches each day. Going from that feeling right to the nightmares seems unbearable but one of my book themes is how everyone just has to keep getting back up.

Between my poor health and my increased workload, I've had less time for short form writing. To be more accurate, I've chosen to put my efforts into writing a book and into having fun with other people so I've budgeted less time for writing here. The PTSD has been bad. It saps at my resources unlike my organic symptoms because it's the result of attacks by people who knew how to hurt me. Thank God they have stayed away. Thank God I can pick up the phone and know that it won't lead to me wanting to die. The worst thing I can expect is a collector and I paid off the only one I know is after me very recently. Hard to believe but I had agreed to pay him literally three days after the worst summer of my life began with a flood.

I just put the smack down on some idiot scaremongering over Ebola. He's clearly a right wing nut having mentioned martial law and FEMA death camps in his post. We cannot have a functioning democratic republic as long as nuts like that can simply pick up a soap box and seem equal to adults with information. Ebola spread from patient to nurse because some people decided to cheap out on training and equipment to make some more money. Nurses are the only people in our society to come in direct contact with vomit, feces and bloody urine not to mention actual blood.

I think dealing with that (hopefully) poor misguided fool has used up the rest of my energy. I should post before I go silent for two months.

If I Could Give a Speech

Hi, my name is John Stapleford. I'm here to talk with you today about disability and pain, subjects about which I wish I knew less. Let me tell you something important up front just so we have the right understanding. I am not a doctor and so my medical advice is, at best, anecdotes of what did or didn't work for me. At worst, it's uninformed opinion. I have what's known as an Arnold Chiari Malformation II with a tethered cord. This means that I was born with an improperly shaped skull which failed to hold my brain in exactly the right place. Decades of gravity along with other factors not yet understood forced my brainstem down so that it tried to occupy the same space as the top of my spine. I try to make jokes about the subject but my brainstem and the top of my spine were squeezed in the process for decades. Shortly after I turned 25, I started having strange and inconsistent symptoms. Since the brainstem controls the involuntary processes in the body like your heartbeat, digestive system and unconscious breathing, there was a potential for catastrophe. Too many people have died as a result of undiagnosed or misdiagnosed ACM. Since the top of the spine is the first place where signals from the brain move through on their way to the body, there was no way to predict my symptoms from day to day. The one constant was pain which is the body's way of warning you about damage.

There are two basic categories of pain. There is acute pain which can be extremely unpleasant but it goes away when its cause is fixed. I'm here to talk about chronic pain. By definition, a chronic condition is one which lasts a year or more. Chronic pain can treated but it can also last a lifetime. As time passes, the pain affects more and more of life until some of us wonder if there will be anything else left to us eventually. No matter how hard you try, chronic severe and extreme pain will affect your lifestyle. You will likely lose the ability to exercise on anything resembling a regular basis and a truly sedentary lifestyle makes secondary diagnoses all but inevitable. If you have a family history of diabetes, you will probably suffer from it sooner or later. The same thing applies to heart disease and other lifestyle related diseases.

That process is pretty simple to understand but constant pain hurts your immune system directly as well. Those of us who suffer from high end chronic pain are far more likely to suffer from autoimmune diseases where the body attacks itself. One of these is becoming more commonly diagnosed in recent years which leads too many people toward doubt. I hate to break it to you, doubters, but fibromyalgia is real. It amounts to adding pain on top of existing pain. I can't tell you what proportion of my pain is due to the Chiari and what is due to fibromyalgia but it turns out that pain is pain. It hurts no matter what the cause might be.

I try very hard to remember this and not resort to rudeness when people compare their pain to mine. Your leg cramp is as important to you as all of my pain is to me. All I ask is that you offer others the same consideration. Please do not tell the person who is facing decades of severe suffering that they are lucky because they don't have terminal cancer. It takes a great degree of personal strength to face a lifetime of pain or a drastically reduced lifetime. I say it takes another type of great strength to go to work and face a job you don't like at all. Let's all just try to respect each other.

The affects of chronic pain are more than physical. Depression is just about inevitable when you wake up to what amounts to torture and know you'll face it again tomorrow. As Han Solo said in "The Empire Strikes Back," "They didn't even ask any questions." Chronic pain might not always be a matter of degree similar to the extreme torture we've all seen on TV but it breaks you down all the same. Your body produces neurotransmitters in limited amounts to deal with pain and regulate mood. If all of your supply goes to absorbing the pain, there is little or nothing left to keep your mood regulated. It's simple chemistry.

With so much working against the chronic pain patient, coping becomes a full-time job. You might even have to call it a career. When you seek to find the right career in life, everyone tells you that education is the key or silver bullet or you can use the cliche of your choice. It applies just as much to this full-time job as it does the paying sort. Then again, educating yourself about your condition can save you money over time and Ben Franklin taught us that a penny saved is a penny earned.

It turns out that you're paying your doctor already so why not use her as a resource? Listen to what she has to say and then ask intelligent questions. You will likely find yourself asking yourself questions between appointments and you probably wouldn't be asking if you knew the answers. Therefore, write these questions down and ask them at your next appointment or call the office if you don't think you can wait. If your doctor gives you an answer or a suggestion, try it out before rejecting it out of hand. Sometimes, all those years in school actually pay off! If you find yourself unable to trust your doctor, you might want to try a new one. It's better than making guesses that could prove harmful in the long run.

The internet is a vast place full of information both good and bad. Unless I have an incredibly lucky turn of events in my life, you will be reading this on the internet. For every disease out there, there seems to be several internet communities. Yes, there will be feuds commonly known as flame wars where people trade insults for months over something said in jest but taken seriously. We don't have tone of voice, facial expression or body language here to help us so I try to be a little extra polite. In any case, take internet opinions with a grain of salt but take them anyway. If you have chronic pain, you need every favor you can get anyway. Take the advice. Take it to your doctor and see what she thinks of it. Even if she thinks it is garbage, you've learned something.

When I was getting sicker seemingly by the day between my two surgeries, the internet Chiari community and my neurosurgeon were 180 degrees apart on what I should do. The doctor said to go see a therapist so I did and she found me to be of sound mind. The internet community said to have a second surgery done by a Chiari expert. My neurosurgeon said there was no such creature. When the community was united in telling me one thing (a miracle in and of itself) and my doctor told me the opposite thing, I sought a second opinion from the Chiari expert who saved my life. Do not be afraid to seek a second opinion in the case of serious illness because an honest mistake can kill you. Chances are that it won't. The stakes may be additional pain but that's serious enough for me.

When you're educated enough to start, get your questions answered and get a treatment plan, you need to be engaged in that treatment plan. I may sound annoying when I say this but I consider my doctor to be my partner in my treatment plan. I never lie to my doctor even if that means refusing to answer some questions in an honest way. In order for a treatment plan to work, it needs to be adjusted to fit real life concerns. That means you need to track your symptoms as soon as you have a doctor or sooner. When do you feel best or worst? What activities make things better or worse? What about your environment? Do you feel worst in cold weather or in rain? Do you react badly to commotion around you? Does eating make you feel better or nauseous? Even if it might be a coincidence, report it. Try to track it all if you're up to it or have a loved one do so for you. If you can't try not to sweat it too much but I'll return to this last point soon.

First, you need to put on your mad scientist's hat. Be an innovator with your doctor's permission. I tracked that my arms tingled, burned or had a sort of electrical feeling. My tracking revealed that I felt better when I wore a long sleeve shirt despite my personal dislike of sweat and heat. I asked my doctor about experimenting with tighter sleeves instead of warmer ones when I learned that constriction could help with certain kinds of pain. Eventually, my beloved bought me a pair of leg warmers for my arms made of spandex or some imitator. It was no fashion statement but it helped at least a little. My fibromyalgia medication helped most but the fibro pill plus the constricting sleeve helped a bit more. What I considered to be excess body heat in the arms, combined with the medication and the sleeves turned out to be worth an hour or so of additional relief before the tight sleeves became uncomfortable and so I removed them. As cold weather moves in and things get worse, I might try to work out an hour on/hour off type schedule with the doctor's approval.

Even though I have moments when I want to smack the next person who tells me to cheer up so I'll feel better, your morale is crucial to coping with chronic pain. Since nothing brings me down more than feeling helpless, my morale plan starts with pursuing goals. These are my goals and not something from a doctor, of course. I'm a writer so I have a goal of working on my writing when I can. By keeping the definition of working on it as broad as possible, there is almost always something I can do. While undergoing cat mandated and enforced rest periods, I develop plots and characters in my head. Just make sure that the goals are important to you and that you stay flexible about them, you can probably stave off some of those helpless feelings.

With the way your health changes day to day, it helps to think in the long term, the medium term and the short term. In the long term, I have several novel ideas that I would like to move from their current stages through being published with all the fame, fortune and instant success that I know I probably won't get. That's why long term goals are usually more aspiration than workable plan. Medium term plans may be ambitious but the time frame is vague for that reason. Over the next few months, I'd like to finish the next (or first) draft of one of my novel length projects. A healthy person with as much unoccupied (by paying jobs) time as I have could probably finish off one of these drafts in a week of work. Instead of concentrating on that, I prefer to think about how much better my work will be with all that I put into it. We already went over short term goals. On the morning I went on to write this section of this project, I removed a character from a novel draft and began improving her. With a likely net negative result in pages written, I have to be careful about being too literal in my goals. The project moved forward.

Finally, the greatest key to morale may be getting your treats. Everyone needs something that they look forward to in life. For some, it may be that drink after work that is a major part of their stress reduction routine. Once again, I like to break treats down into short, medium and long term goals. My short term treats tend to involve eating or drinking. This morning began with a nice cup of "Smooth" style coffee bought from Krispy Kreme doughnuts. I don't know exactly what they are going for because the coffee is not particularly distinctive but it is best for what it is not. It is not so strong that drinking it black the way I prefer is not an act of courage like the ordeal rites of many ancient cultures required to be considered an adult. It had enough caffeine to take me from the wretched place between asleep and awake where I get no rest yet also get nothing done but not so much caffeine that it hurts my stomach despite too little sleep. One cup of coffee can get me through an entire day even now provided that I'm planning on that cat enforced rest.

My medium term treats involve social events like the State Line beer tastings I've detailed in my blog before. It's my main social release and that family business takes care of me. In their old setup where everyone had to stand, they provided me with a chair. It was awfully courteous of them and I notice these things. State Line Liquors is one of the most handicap friendly businesses that I know of. They also have an amazing selection of beer and I have a more advanced palate than most American beer drinkers. You can go in there and get a variety of different brands of most beer styles worldwide.

In the long term, you could say that I live for my wife and our little family first and Pearl Jam concerts second. If my beloved weren't around...nevermind! (She knows I'm teasing.) Pearl Jam is an amazing band and I try to see them once each time they put on shows in my area. At the last concert, Eddie Vedder decided to climb one of the lighting fixtures during an extended guitar solo of one of my absolute favorite songs. It was something else ticked off my bucket list since he behaved himself the first two times I saw them play. They put out an album and go on tour pretty much every other year and I'm worse than any kid at Christmas every time.

Another long term treat would be a beach vacation at Ocean City, MD. The image of sitting out on the balcony listening to a background of gentle noises sustains me. I was sipping a bottle of German beer just sitting with my beloved talking about how lovely it was. I was writing in my head as usual and life was good. There's not much more you can ask for out of life and that's the essence of a long term treat. You cannot do it every day because it's too expensive and because it would be spoiled. Nonetheless, the long term treat sustains you and keeps you going even when the pain is worst.

It isn't easy to thrive during your moments of worst pain though the lack of choice makes it easy to survive. It's much better to avoid the worst moments when you can which is probably why "Be gentle with yourself" is the unofficial motto of several Chiari groups I am part of. As far as I know, no one has ever sat down and explained what this means. Most might consider it overthinking but I'll overthink it so you don't have to.

First of all, don't do it if it hurts. Fill in the it in that sentence to suit your own case. You can even substitute some other symptom for pain the way my brain does all too often. In any case, the best way to avoid your worst symptoms is to avoid the triggers. Even without considering cases where you are wrongly considered able to work and cannot stop without losing everything, avoiding triggers is harder than it sounds. I don't look down on those who have to work or those who haven't applied for disability. I am considered disabled by the Social Security Administration and by a private insurance company who helped me apply for Social Security Disability Income (or SSDI) which is something that makes me lucky if you look at it right. I'd rather be working but I can't. I'll get to the bottomless pit of guilt I feel about it later.

For now, let's stick to why it's hard to avoid triggers for those of us lucky enough to have disability income. I've been dealing with this condition for 15 years and I do not know what my limits are. Chances are that I will pay a brutal price in pain for writing as much as I've written today which is far less than the total amount you see. It might hit me within the hour or it might take until tomorrow. I accept this because the writing helps me feel useful and I got four whole hours of sleep overnight. I haven't been able to work on it at all in the prior week because I couldn't sustain a train of thought. Cause and effect are neither proximate nor proportional.

Every time I go see the pain doc, I'm down for a time ranging from a day through a week. This past appointment was easy as they go. Melissa and I arrived early so we were at the office for a bit more than an hour but less than an hour and a half. There have been times when I have been there less than an hour and been flattened for a week. I used to be able to hold paperback books in my hands and read them but that's too much for me now. I use an e-reader on my tablet instead because it's lighter and there's no page turning but I don't know which is the helpful thing. As far as holding books go, one day I could do it and then I couldn't do it anymore. The dam just burst. I stopped trying after a while because it was not worth the pain.

The tablet allows me to do so much more and I do not understand why. There are some obvious conclusions like weight but writing short emails is much easier as well despite how much harder it is to hunt and peck with a stylus versus typing like I am now. I don't know why the tablet helps so much but that brings me to the second part of being gentle with myself. If it works, I try not to question it. I tell my doctor what works and let her sweat it if she must. I know that this conflicts with being your own mad scientist but there's a balance in there somewhere. I try to maintain it as best I can.

The final part in being gentle with yourself is dealing with setbacks. Sometimes, like today, I am overdoing it. I don't think I'll have any problems but I did examine why the tablet might help me as well. That's like looking a gift horse in the mouth. (You examine the horse's teeth to determine the value of the gift instead of simply accepting it politely.) I've managed to avoid profanity so far but that's unusual for me while writing on this topic and I'm done avoiding it here. The fact is that shit happens and you can either blame yourself and make it worse or just let it go. My confession is that I am terrible at letting things go. I'm extremely well trained at blaming myself for things and I'm working on letting go. I can't quit cold turkey so my short term goal is to fret less when shit happens.

Shit happens, you blame yourself and then someone tells you that you seem depressed. You may be depressed but neither your friends nor I am equipped to diagnose you with depression. When bad things like crippling illnesses happen, you're expected to be unhappy about it for a while and then from time to time. Being unhappy for a logical reason is what some people are trying to call the blues instead of depression. As jazz great Louis Armstrong sang, "I got a right to have the blues." Okay, maybe he sang, "I got a right to sing the blues."

It doesn't change the essential truth. While the blues are not an illness like depression, they are pretty darn unpleasant. If you can go through life as a Chiarian without bouts of the blues, you're superhuman. I consider myself to be awfully good at adapting activities to accommodate my disability, there are things that I cannot do. There were years of my life when I took riding rollercoasters for granted but no more. My second brain surgeon didn't just forbid me from riding them; he spent a few minutes closing all the usual loopholes. I am forbidden to ride anything resembling a rollercoaster for the rest of my life. In truth, the g-forces involved in car rides leave me in severe pain so I wouldn't want to ride one anymore. I hate the fact that my ability to adapt doesn't matter. Under the penalty of crippling pain that I can only imagine or just plain death, I cannot ride.

There are other things that I cannot do anymore that are far more important than amusement park rides but that was an absolute prohibition. I cannot drive anymore especially since I surrendered my license for everyone's safety. I held on to my political activism for years but had to give that up. There's no chance that I could win even the most local election because my ability to speak clearly goes away with the slightest amount of stress. I can't walk door to door for voters or even make phone calls asking people to vote on Election Day.. It's a real bummer so I need to move on here.

I can't go out with my friends unless the trip amounts to traveling a very short distance for a meal. It's a lot of work to spend time with me and it can get pretty scary with me moaning and groaning in pain while my body jerks about beyond my control. Melissa is the only person who can handle being around me on a regular basis. There are old friends who would keep me company no matter what but life happens to them, too. Most of my old friends moved to other states. I'm trying to make jokes about how my doctor appointments are the biggest part of my social life but it stopped being funny when they realized it's true. Social isolation is bad for mental health in general so thank God for the Internet.

Often, the thing that gives me the worst cases of the blues is thinking about tomorrow. I know that I am going to be in pain tomorrow, that some unexpected disaster might strike and I'll lack the physical means of dealing with it all. What if there is more trouble with the plumbing? If I were healthy and working, I would take the toilet off its mounting or open the access to the sewer line and use a rented plumber's snake. It would be an annoyance at worst but I'm not healthy with a decent income. If anything goes wrong with our plumbing, we have to call a plumber. Recently, that happened three times in a year and I'm lucky that the general contractor's work was covered by my homeowner's insurance. I was also lucky that I had the most understanding contractor in the world. If there's a fire, I might not make it out alive much less be able to save my beloved wife and our cats. I live in dread of what the next big crisis might be and it turns out that I fear losing loved ones, pain and financial disaster more than anything. The dread is so bad that I think getting killed could be a blessing in disguise until I think of my beloved's pain.

My life has shrunk day by day and year by year until it consists of little but the problem right before my face. How are those of us with intense chronic symptoms like pain supposed to deal with life's curve balls? I can't hit a Little League fastball! Daily tasks have gone from routine to daunting over the last 15 years. I am afraid of visitors because I don't want them to see me like this. I am dirty and in need of a shower all too often but how does one shower when the pain and dizziness can get bad enough to fall from a seated position?

If I am in bad shape because of my inability to take care of myself, the house is ten times as bad. The problem is that I have never found a satisfactory answer to an important question. How do I cook and clean while in extreme pain? Cooking is dangerous for me in the literal sense because getting tired can trigger my twitching. Standing in front of the stove is out of the question from a literal point of view because I will fall down from exhaustion in the time it takes to cook all but the quickest concoctions. Unfortunately, falling down is not the worst problem because I can reach the knob to shut off the stove from the floor. The worse problem is that I would have to handle things hot enough to burn over the open flame which is even more potentially dangerous. I used to enjoy frying up sandwiches for both Melissa and me but the near certainty of kitchen accidents has left her in charge. It's shameful that I have to ask Melissa to feed me when she comes home from another long day at work. Thankfully, I do pull my weight a little where the next problem is concerned.

Every month, I play a game best played by those who are bad at math. How does one take a fixed income that doesn't keep up with real inflation and then stretch it to cover more expenses? The answer isn't credit in the intentional sense because I have no access to credit anyway. The answer is that people around me show amazing levels of kindness and patience. The plumber who came out the day before the in-laws were coming down to spend Christmas with us as our house guests probably should have left us in the lurch. Instead, he noted that it was almost Christmas and took the meager contents of our checking account in lieu of the full amount. A contractor sent out a crew who did superb work on the house got paid some by the insurance company and took my word that I would pay him the balance I owed. (He has since received the money I owed him.) He waited an outrageous amount of time while my life became a comedy of (expensive) errors. He did not once contact me to hurry me along. I am not identifying him here because I do not wish for anyone to attempt to take advantage of him because he was generous with me. I am blessed to have professionals like him around me.

There are also those who send collection agencies after me and I will try to pay them, too. My last job as a relatively healthy person was collecting credit card debt over the phone so I am in an odd position. I empathize with their position of trying to collect what they are owed but you have to remember that they money isn't there. At the same time, I use every bit of what I learned doing the job against them. The result is a nasty stalemate where I feel terrible about not paying what I owe. Regardless of my health, I believe in meeting my obligations and not being able to do so is a stain on my ability to feel worthy of the term, "human."

If I'm questioning my humanity because I fail to perform important tasks, it's needless to say that I suffer from more than an average amount of guilt. Guilt might be the second most common topic of conversation between Chiarians after symptom management techniques. Your doctor probably won't tell you this but a lot of us believe guilt should be listed as an official Chiari symptom. When I'm not completely out of it with pain, the guilt is overwhelming. I'm an adult and I was once accustomed to caring for myself in most ways. Now I can't take care of myself and I know that this is unfair to the good people in my life by definition. Melissa has it the worst if you look at things fairly. If she didn't love me so much, she would never put up with me and my needs. How can it be fair to others when a once independent adult acquires special needs?

The day to day experience for her and for all the caregivers out there is unpleasant at best. She doesn't make me come right out and say it but my needs are a terrible burden. I'd hate to have to ask her to agree to these terms. Please work full time then come home to cook, clean and do other assorted chores for me in your copious spare time. Please put up with my selfish desires and make getting me my "treats" a priority. Also, please accept the fact that I will no longer be reliable. If you ask me to do something and I remember it by some miracle, there's still a good chance it might not get done.

At the same time I am contributing less, I need more of everything. This isn't a matter of greed or isn't usually a matter of greed. I am coping with things that I hope you never truly understand so I need more. Unfortunately, more for me usually means less for you. I know that and I can't change the fact. I am going to contribute less and expend more resources for a very long time if not the rest of my life. Most of my friends and loved ones will give way under this pressure so I need you even more.

Chiarian guilt puts caretakers between a rock and a hard place sometimes. You better not have a bad day at work and come home complaining because I will feel guilty about it. This gives you the false impression that you are responsible for my guilt at least that day. We might even fight about it which makes this a decent segue to an emotion many of us would prefer to deny. In case you haven't guessed, I'm talking about anger here.

There is a lot to be angry about if you have a painful chronic illness like Chiari and there's nothing wrong with being angry. It's what we do as a result of being angry that can be right or wrong. Emotions are neutral on their own. There are a few general complaints most of us have expressed whether publicly or to our long suffering loved ones. The first feels so childish that I hate to admit to it but it doesn't feel childish when I'm angry about it. Why did this happen to me? I'm not perfect but there must be some bad people who could be going through this instead of me. There are murdering dictators living in palaces out there while I go through all this pain. Why me?

For God's sake, please don't try to answer that one. Telling me that I was never in the best of health and that the doctors did a good job but my poor habits sabotaged my recovery is not a long term strategy for co-existing with me. I'm hoping most of you are recoiling at the previous sentence and are telling yourselves that you would never say anything like that. I doubt that anyone would ever put something so literally bluntly but I'm related to some people who have informed me that my obesity doomed me to surgical complications. There are plenty of obese people out there who don't go through this so your genes might very well have doomed me. Why don't we just agree that trying to assign blame is a bad idea?

Actually blaming me for being sick is pretty rare but I wanted to get that out of the way. If someone has lung cancer, you might want to avoid the logical conclusion that the 40 years of smoking had something to do with it. You also don't want to make an "oh so original" suggestion to the suffering person experiencing the blues or anger that what they truly need is a positive attitude. Most of the time, I try to concentrate on other things and avoid exposing others to my mood swings. A good biting sense of humor is a lot more useful than thinking happy thoughts in my opinion. Happy thoughts do not make the pain stop. Keeping my chin up is something I try to do for your sake

One thing I understand in my head but not my heart is how life continued on around me at its same old relentless pace even when I couldn't keep up anymore. I am not talking about people walking too fast here. Most of the time, I remember that I am not the center of the universe so and I get over it. Other times, I want to remind people that I am the center of my own universe. (That would be Melissa but I'm near the center anyway.) If I don't do certain things, they do not get done. I handle the major bills for the household largely because of my experience with the world of credit. I'm also able to handle the weirdness of a world where major household bills are based on an ancient model of businesses paying their employees a predictable amount of money on the first of the month. The big bills arrive and are due early in the month unless you negotiate something else but this is difficult.

It is difficult to deal with fixed due dates based on salaried employees when you have to deal with the weirdness that is getting paid in the United States. I have two forms of income because I bought into private disability insurance at my last job. That private disability insurance required me to apply for and then helped me get Social Security Disability Income (SSDI) and Medicare. My private disability insurance pays me a fixed amount on a date that was based on mailing checks out all over the country. The private disability did switch over to offering direct deposit but they continued to keep the system surprisingly random. I get that deposit no sooner than the seventh and no later than the 12th of each month. Not surprisingly, the deposits land on the 12th more often than not. This system used to bother me before I got to deal with SSDI.

SSDI deposits my monthly income on the third Wednesday of every month. I'm not kidding. The third Wednesday of the month can be as early as the 15th or as late as the 21st. Even my most flexible utilities do not want to deal with this reality. I call them every so often and tell them that my payment will be a few days late and they offer to change my due date. This would be such a pleasant change that I tell them I want to make things due on the 21st. Why? I get my SSDI on the third Wednesday of every month. The actual date varies. If you make the 21st the due date, I will always be on time because I will simply pay earlier on most months. Why not take your pay on the 21st and use it to pay the next month so you can be on time.

The truth is that most months work out so that I can use money deposited by Melissa's employer (on a regular schedule of once every two weeks) and pay on time or even a little early. The problem comes when something bad happens and we're hitting that empty mark on the checking account one or two days before payday every two weeks. It doesn't take much to throw off the system. There are also times when I am in so much pain that I fail to notice things like what the date is or even the month. By the terms of our relatively poor standard of living, that deposit on the 21st is a lot of money. If I can get the utility to hold the payment arrangement I had to make the last time I was too sick to notice one month turning into the next until the 21st, I can make respectable payments on things.

My complaints about weird paydays probably aren't something most people or even most Chiarians would resent. Therefore, I'm going straight to something simple. Let's say it's one of those months when I cannot afford to get my medicine filled on time. I usually have a small surplus to get me through those couple of days but then I am in great need afterward. We wait for the pay deposits to go through then go to the pharmacy and wait in line. We wait while the pharmacist processes these prescriptions that are about as fancy as US currency so that no one can copy them. (God forbid that someone gets high!) That's when the poor pharmacist who has always treated me well walks up to me with that look surgeons on TV get when they have to tell the patient's family that he's dead. That's when I know one of three things has happened.

One is that my insurance company has refused to let the prescription go through. When performing my 1080 Super Duper Looper jump required to fill a narcotic prescription, it's possible that I two-footed the landing so they need to review the tape. If I two-footed the landing, I'll have to repeat the entire performance. Then again, it could be a simple case of my doctor transmitting outdated Presidential nuclear launch codes required to release the medication. Of course, I might be giving you a little sarcasm here. Honestly, I'm impressed that the system works as often as it does with so many intentional complications thrown in.

There is one explanation that I've heard so many times from the well intentioned and competent pharmacist that I hear it in my nightmares. The pain medication is on back order because of problems at the factory. The pharmacist is such a good guy (or gal) - my pharmacy has plenty of good examples of both - that I suppress my rage. They are aware of how severe my symptoms are so they will do backflips trying to get me my medication. Unfortunately, suppressing my rage while already in agony is bad news.

There's no help for it because doctors, nurses, pharmacists and other health care professionals have terrible job pressures. Do you know why you always seem to have to wait extra long to see the doctor? The reason is that insurance companies require doctors to see way too many patients in a short period of time. When I last checked, doctors were required to see four or six patients every fifteen minutes. Even with nurses taking medical histories and your vitals, that leaves no time for the doctor to help patients with complicated cases like mine. If the doctor spends five minutes with a patient, it means that she is behind schedule for the entire day. If someone feels lightheaded standing up, that could require an hour of the doctor's time and the waiting room hovers near the point of rioting. My doctors take as much time as they need and the schedule suffers. I do my share of waiting but I try to avoid complaining. If I wanted a different doctor, I would go see a different doctor. This one cares.

My last real pet peeve that makes me angry on a consistent basis is when people compare unrelated illnesses. I do not want to hear how lucky I am not to be a terminal cancer patient after six hours of trying not to cry in public. I give cancer patients the benefit of the doubt that the whole experience sucks and ask that the other person do the same for me. Not surprisingly, I've never had an actual cancer patient tell me how lucky I am. Sometimes, I think about terminal patients and feel a tiny bit of jealousy that they will have an end to their pain. Then I try to put myself in their shoes and end up shaking in fear. I'm in no hurry to get a terminal diagnosis no matter how I felt about it in my teenage years. Therefore, I will agree that I do have some good luck. If nothing else, I married well.

People ask me how I survive if they believe me about the pain. Some people probably think I'm lying but most simply cannot fathom pain so bad. So far, I've never been able to offer a good answer about how I survive. It was simpler in the beginning when I believed that I was either going to be cured or dead in short order. When I learned that there is no cure for Chiari but that surgery could be an effective treatment, I was determined to beat the odds. I could do anything, after all, because I put so much pressure on myself to do or die. The anxiety I felt trying to maintain the attitude that I was going to get better was too much to bear. I decided to accept the fact that I was sick and that I couldn't make myself better gradually with many starts, stops and wrong turns.

One thing I wish I'd been able to do earlier was appoint Melissa as my life coach with near dictatorial powers for when I'm feeling my worst. She was the only person for the job because she was the only person I trusted, loved and trusted to love me. She was also the only person with physical access to me. She knows almost everything that I know about my symptoms along with what helps or hurts them. If I'm panicking from pain and she makes me tea, I have no trouble believing that the tea will work. She reminds me to be careful how hard I push myself. She is also good at drawing her own conclusions like when she decided that I was drinking too much beer to no positive effect. If anyone else had cut me off, I would have fought it.

I do try to avoid overworking her in her life coach role. Most of the time, I can handle the pain with some sort of remedy as long as it doesn't get too far out of hand. It's when I find myself in agony because I've been trying to finish some project or because I'm just being stubborn that I need her the most. The actual goal is to treat extreme pain long before it becomes extreme. Not every symptom spike need be a crisis.

There are steps I take to combat the long term aspect of my long term symptoms in addition to treating the specific symptoms. First of all, I try to follow the Chiarian motto, "Be gentle with yourself." I do not have many deadlines in my life these days so it is okay to finish a project tomorrow. If the pain starts to surge, I take my meds instead of following some short term strategy of toughing it out. I've learned to rest and meditate pre-emptively on a daily basis though I can dial up my approach when symptoms spike. My symptoms get worse due to physical and mental stress or exertion. Therefore, I try to save the big efforts for things that matter. It doesn't matter if the wear and tear is from something pleasant or unpleasant. It all adds up.

I try to combat guilt by making myself useful and adding value to the world. We've already talked about short term, medium term and long term goals but only in terms of the goals themselves. Each of the three has a specific role to play in my long term survival strategy. The idea behind short term goals is that they are something you can accomplish on all but the worst days. For some, it might make sense to have "get out of bed and get dressed" as a short term goal. It is something that you can do on all but the worst of days, there is a definite benefit to it. Even if you're just going through the motions, you're getting out of bed when staying in bed hiding from the world might seem like a better idea but getting up and getting dressed so that you can answer the door if you must is a step toward doing something. Unfortunately, it won't work as a goal for me since I don't sleep in bed most of the time when I sleep and I sleep in some clothes to defend against overly affectionate cats.

For me, the short term goal of most days is to check my email and act on what I find. I can't walk to the mailbox reliably so I have all of my bills set to paperless options. Since I have this odd fear of disaster lurking in my bills at any given moment, reading them and paying them or making note of when I'm going to pay them steadies me. Once I see that the wolves are going to stay outside for one more day, there's a chance of having an enjoyable or productive day.

Writing this speech was a medium term goal for me. I've been interrupted so many times by days of extreme pain that finishing a draft will be a victory regardless of anyone reading it and being helped. It has rained all night and I got no sleep after nothing but a little nap the day before. It's quite possible that I won't finish today. We could be in for a rough weather pattern that could keep me from picking this work back up for a week. Regardless of when, I know that I will finish and I need to concentrate on taking pride in getting the job done.

My long term goal is a life long aspiration. I want to make some sort of living as a writer as I make a name for myself and help people. I have no way of making this goal come true through hard work and persistence unlike my short and medium term goes. If you don't mind a few technical terms, hard work and persistence are necessary traits for professional writing but they are not sufficient. A successful writer takes a lot of hard work and persistence to a chance meeting with someone who can offer them a break and their decades of work make them an overnight success as the joke goes.

I don't know which motivation will keep me going today. I've already checked my email so I've done the bare minimum. I won't be published today under any circumstance I can imagine. I'll have to hope for some treats to make the most out of today. There's no ice cream in the house so I can't have my perfectly reasonable bowl of ice cream after a long day. On the other hand, it is Oktoberfest time here in Delaware so I might be able to talk Melissa into getting me a few bottles of something exotic. I had an Imperial porter pumpkin ale not too long ago. While it wasn't German, it was awfully good. I know it seems as though all I care about is food but Pearl Jam isn't touring in the area right now

Next month, I turn 40 and I plan to celebrate it with a purple Mohawk haircut so you can expect lots of pictures. I've never thought of turning 40 as something to fear which brings me to my last few closing points. Symptom management is only part of advanced long term survival techniques. It is very difficult but you can change your way of thinking. Instead of fretting about the pain that I'll be facing tomorrow, I remember that tomorrow is another day I get to spend with Melissa. I lived a lot of miserable and lonely years where I thought of death as just another valid choice. In fact, it was a better choice than some or so I thought back then.

After all those unhappy years, I cannot undervalue a day with the woman who loves me. In all those years of thinking that I wanted to die, I didn't suffer through chronic pain. I'd have to say that feeling loved and feeling agony is better than healthy misery. This is an example of a coping technique known as reframing. Some call it making the best of life but I think it's a bit tougher than that. Reframing chronic pain doesn't change the way I experience the pain and it isn't lying to try to please the person who made your life less happy. We all know that the onset of Chiari symptoms is very painful so I reframe related things.

Pain wasn't the only change in my life in January of 2000. The fact was that I hated my job and pain so bad that it made me dizzy and a little nauseous also made it too dangerous to drive on Delaware's main Interstate Highway. Eventually, the first surgeon wrote a note stating that the stress of working my job made me worse so I needed to stop working it for a long time that might end up being permanent. Lying in my bed trying to find a soft and cool spot on the pillow for some pain relief might not sound very nice. In fact, it rated very highly on the all-time list of miserable things. On the other hand, I was able to look at my watch and smile. If I had been at work, someone would have been threatening my job because someone else on my time was doing poorly. They were afraid she would sue if singled out so we had equal opportunity misery.

I would have preferred working if you counted all of the factors like being able to pay an entire month's rent out of one week's pay. All else being equal now, I'd rather be working a terrible job than be disabled but there are advantages to this. Reframing not being able to work and getting less than half of my previous income isn't easy. I was an awfully good collector and so I earned bonuses equal to a significant portion of my income plus I earned a shift differential for working nights. My disability income was set at 60% of my base pay without bonuses. If not for the cost of living adjustments (COLA) also known as inflation adjusted income, we would be destitute.

Some things have turned out okay but please let me count my own blessings. There are times when I choose to make things seem a little worse than they are and the main reason for this is the mistaken belief that I'm on "welfare" and have it too easy. I have to kick those people out of my life as I identify them because there's something they're missing about the word, agony. It's better to avoid the argument in the first place and there are also times when I feel like whining. (See right now with overnight rain and not one intoxicating beverage to be had.) I try to avoid overreacting but it isn't easy. Please don't try to count my blessings for me.

Finally, I try to reframe this entire experience as something I had to learn so that I could help others. I don't want to get into an argument over terminology with anyone but I believe that this urge to help others is a calling. I write fiction that deals with life's worst challenges, I keep the pain blog when I can in order to bring my daily struggles into the light. I could say, "I'm fine. Thank you." but I don't think anyone learns from that example. I'm far from a true expert but I think of myself as a psychological first responder. The part of me that doubts I can add anything of value to the word has a few technical terms that add up to me being delusional.

Sometimes, the best way to deal with an argument like that is to bite the bullet, accept the criticism as fact and see where it leads. If I am delusional and my writing helps no one, I don't care. Remember the Chiarian motto, "Be gentle with yourself." If I'm gentle with myself, and accept that all this work might help someone, it will end up helping me. Doing what I can to help others helps me and this is a good thing.

Thank you for your time and attention. It's been a pleasure.

This Summer

I am a trained historian and one of the things I was trained to do was to avoid throwing my hands in the air and screaming that the world is going to hell in a handbasket. It is more difficult to do this summer than in most times I can remember. The problems date back to the previous winter and events that are much further in the past. Putin of Russia has spent the time since Boris Yeltsin died stirring up nationalism in Russia. When the Ukraine was offered political ties to the West that would be in their long term interests, the government said yes. Then Putin pulled on the leash that this puppet Ukrainian president wore in exchange for vast material wealth. In a move that surprised everyone, Ukraine overthrew the Kremlin dominated government first by voting and then in the streets when the constitutional steps were ignored. Ukrainian security forces first attempted to repress the people and then refused to engage in more than a certain level of violence against the people.

No one was surprised when Putin made the face saving step of occupying the Crimean Peninsula. Russia has considered that ground worth a war since the aptly named Crimean War in which poor communications caused a certain Light Brigade to charge the wrong hill. I can't help but throw these little historical lessons in when I can. The British commander on the ground had a big hill blocking his view of the battlefield when he ordered his light brigade of cavalry to counterattack a hill where their enemies had not yet consolidated their defenses. Instead of attacking that hill, they were slaughtered attempting to capture a much better defended hill that their commander could not see.

My information on internal Russian politics is outdated since I've been fighting my own war since the end of the Soviet era but I am better informed than some. What seems to have happened is that the nationalists who helped Putin hold on to power for this long insisted that Russia retake Ukraine. It is too far away from the United States to gather military strength there quickly, it has been considered within the Russian sphere of influence since the Cold War began - I had to delete Soviet twice before I managed to type Russian. - and it had not yet begun to be considered European especially by the regular people of Europe. Putin's nationalist critics must be proud because Putin chose well.

Then the Ukrainians failed to fall in line and recognize that they had been checkmated on the chess board of Great Power politics. I expected Russian troops to have occupied Ukraine by now in all honesty. With NATO allies on Ukraine's other borders, there was not much further the Russians could go without triggering Article 5 of the NATO treaty. That would have meant a war that Russia could not win if it were pursued in earnest. Forget the US Armed Forces for the moment. Russia could have been stalemated by Lithuania, Poland and Germany using weapons already supplied by the United States. The historian in me sees Great Power politics at work: Putin wants a buffer zone against those NATO countries I just mentioned and eastern Ukraine would do yet the traditional American in me sees an underdog defying a bully and wants that bully's nose to be bloodied. Chances are that diplomats will find some face saving measure for Putin that doesn't include annexation but might include a demilitarized zone or some other creative idea that most of us haven't considered. Sanctions will work given time because they are targeted at the nationalists pushing Putin.

Here's the fun part. Writing about Gaza will have friends leaving flaming bags of dog "waste" on my front step and I can only hope that they stick with the metaphorical kind. The Israeli/Palestinian conflict seems to have no beginning so it seems to have no possible end. This conflict predates the printing press for sure and, in some ways, can be said to predate common use of the written word. It doesn't help much to limit things to the modern (1948 - now) version of the conflict. I could give you three or four well regarded accounts of how the modern conflict started and not one of them will be in complete agreement with another. Right now, a murderous regime gained power in Gaza thanks to a vote that the region was not ready to handle. One major reason why this murderous group (Hamas) gained power is that the Israeli right wing cannot stop itself from doing whatever it can to provoke anger from the common man on the Arab street.

As recently as the 90s, both sides were committed to peace. On the other hand, both sides agreed to let the looniest person they could find drive the bus. The agreement was that the Palestinian Authority would crackdown on anti-Israeli violence in exchange for the means to do so. Israel agreed to pull back its borders and allow a contiguous state to exist there. The weakness in this agreement was that there were parties on both sides committed to killing. Telling a crazed murdering type that he can prevent peace by a simple act of violence was insane. I'm not claiming that Israel had only one crazed murderer to deal with but the principle is the same. On the Palestinian side, you had suicide bombers infliction gruesome death and destruction on the Israelis which makes it sound as if the Palestinians were at fault.and Israel was completely innocent.

That ignores the all-out economic war that Israel has carried out around the same time as the suicide bombings started. Israeli settlement (ironically driven by Jews fleeing persecution in the Soviet Union in the 80s when they were allowed to leave) has choked off Palestinian economic development in a number of ways. Every time a settlement has gone up, it has taken the most valuable land they considered available. That means things like access to drinking water in that parched land. It means armed settlers putting up barricades that cut off access to vital resources like water on one extreme and the seemingly innocent delays required by having to pass through checkpoints on the other. If you have ever spoken to an American commuter, you know how angry traffic can make someone. There would be riots if something like the unexplained lane closures on the George Washington Bridge lasted long enough. It's like that in places on the West Bank daily.

Despite the fact that I have never been a soldier under fire and I've never faced artillery, seeing the carnage in Gaza has triggered PTSD symptoms in me. The helplessness I endured during my summer of robberies has joined my Chiari symptoms in making me react badly to loud noises. It sounds so stupid but fireworks send me cowering and pain is only part of it. I find myself barely consoled by Melissa's soothing words and the fact that my cats run to me when startled. I look at the violence on one level and know that Israel must respond to bombardment of their territory and that Hamas has been emboldened by the blocked that Gaza has suffered for seven years. Blockades are considered acts of war. I want to scream at someone in an Israeli consulate to use a more effective military strategy against Hamas. Give Gaza port access again and find some way to make it clear that Israel and the Palestinian Authority accomplished this despite Hamas. Otherwise, I want some adults to come in and collect all the weapons being used by both sides.

It felt like a last straw when Michael Brown was killed in Ferguson, MO. It may not feel this way but the worst atrocities were committed at the very start. This all took place after the NYPD choked an unarmed man which caused him to die of complications. I have a horror of not being able to breathe. That man having his chest compressed against the sidewalk and his neck compressed in the choke hold hit the sweet spots in my personal health fears. I believe that I would die from such mistreatment even without considering the Chiari. First, there is the unpardonable act of police murder where Michael Brown was killed. That first night, there was some looting and destruction of property which can be replaced. A strong police presence that included justice for Mr. Brown's family was required Sunday night. Instead, pictures that seemed to come from Iraq, the Gaza Strip and Ukraine started up. After the community suffered a small riot, the police rioted for three nights. All I wanted was for some adults to come in and take control. Couldn't the National Guard disarm this police department? All that choking gas in the air which a reporter suffered on live TV routed me. My coping ability shut down and I just sat there all night barely able to look away long enough to sleep.

Actually, no disarming was required that we know of but the Missouri state Highway Patrol came in and set a shining example for us all. An order from the governor (that a critical local official had the gall to call unlawful) was all it took. It seems that President Obama may have made some strong hints about nationalizing the Missouri National Guard but Governor Jay Nixon did step up. It was almost as much relief as a dose of pain medicine when I saw clear air where there had been tear gas and angry but orderly protestors where the police had rioted. I had my first taste of relief last night since Robin Williams died. It was not total relief from physical pain by any means but I was able to sleep.

It won't last but I could think of it as my own 12 hour humanitarian truce. My dinner made no threats to come back up and I had no nightmares. I did not mention ISIS in this entry because my mind was already overflowing with horror. They have their place in my nightmares despite the lack of direct presence. Perhaps that story will work out as well. Ferguson could still go badly, Gaza could fill our TV screens again and Putin could decide to invade the Ukraine. Sometimes, all you can ask is for a pause in your personal horrors.

A lot of these problems are related with no more than a few adding up to the Shrub's policies coming home to roost. Let's overthrow all the dictators and hold elections so that violent fundamentalists can seize power. Then let's make deals with Putin to use his influence to calm the falling regimes and sell them weapons. I need to go before I'm overwhelmed by disgust again.

When We Lose One of Us

In case you've been vacationing somewhere under a rock, there has been another tragedy in a summer full of them. Robin Williams killed himself as he lost his battle with severe depression. Yes, I do mean that Robin Williams. That man who brought so much joy to so many of us has fallen in a war with which I am all too familiar. It's not surprising by the standards of losing yet another human being. He suffered from depression which is a disease that can turn deadly without warning. I do not blame him or seek to find fault in anyone. The fact is that he held on as long as he could and then he died.

My first reaction was fear. Fictional depictions of suicide threaten to knock me off my personal window ledge. My second reaction was defiance. I am alive. I am surviving my personal war for another day and not an easy one. It was pain doc day and I was screaming, crying and moaning from the physical pain. I know what happened. My sleep cycle failed me the way it usually does on a pain doc day and I spent time riding in the car. Since then, the pain has subsided a little because I threw the book at it but I hurt too much to sleep which is what I probably need the most. I long for the medicine my mother would give me when I had these horrible attacks of painful nausea. That medicine would make me vomit, settle the pain and put me to sleep all in the right order. I doubt this medicine would do me any good today since I was carried to bed in many of these memories. That suggests a somewhat lower body mass.

I was miserable before I learned of Mr. Williams. I'm not being cold. I don't refer to strangers by their first names and he will always be a stranger to me now. Sometime in the third hour of awful news, I told Melissa that I'd had enough. I needed to do something without the TV on because the tragic news would be on every channel. I knew that she would agree because I told her that this sort of story sets me off every time.

After all, there are cracks in my defenses. I make my share of mistakes or more. Learning that someone has killed himself puts pressure on all those cracks. What if he had the right idea? (He didn't but I'm making a point.) Chiarians are only a few among the many chronically ill patients who wonder every day if we can ask our caregivers and loved ones to put up with us for another day. It's not easy telling myself each day that I will survive. What must it be like for the caregivers who must have doubts that we truly require this level of care?

I'm done with the hypothetical points for a while anyway. My New York family gave me another perspective on the subject today. As regular readers know, Barbara, my sister-in-law, had thyroid cancer. There was a relapse scare but the truth was that radiation is required to eradicate thyroid cancer. Barbara is going through the stress of being sick without Melissa being there to care for her. Judy is filling the role of mother which is appropriate since she is their mother!Melissa. She includes taking care of of her sick daughter.

This probably would have gone on longer but I hurt to the point of being forced to stop. The news from Ferguson, MO has dragged my energy down further. All those poor people who wanted to express their pain were beaten down and gassed. I should just get this posted and rest some more.

When Plans Fall Apart

Things were going too well. I won't pretend that's anything other than an excuse. More accurately, I need an angle to write about things so let's just pretend that I believe things going "too well" is a bad sign. Things are much better than they were last summer. Last summer was bad on an epic scale that I hope to never see again. The pain was screaming pain all the time with record amounts of stress keeping me from resting. It turns out that sleep is somewhat important to successful pain management.

There was a moment over the winter or Spring - I do not remember which - when the pain was so bad that I was either asleep or in agony. At the same time, MSN decided to make me jump through hoops in order to use email here on my PC. I tried to jump through the hoops but failed miserably. At the same time, settings changed on my tablet email which is also through MSN. I took months to figure out that my email was disappearing out of my email inbox after two days whether I'd read it or not. Considering my mental state of the time, it slipped my mind that I should have been getting certain bills. I was just too sick to perform those duties that I'd assigned myself and too sick to ask anyone else to do it.

Eventually, I reached a point when I felt a little better. It might be more accurate for me to say that I was worried enough to jump through extra hoops to find the information that I needed. We can skip ahead a bit to the point where I had ditched the provider who had managed to jack up prices two to three times while I was current on my bill. That phone call might have been funny if I hadn't been in agony the entire time. It turned out that I needed to renew my special fixed rate plan every so often and the phone person would not accept that I cannot depend on my ability to pay close attention to these things. I refused to enroll in a plan that would save me money for 90 days or something like that and then become absurdly expensive unless I remember to renew after that. Eventually, I resorted to rudeness and informed the phone person that she would either cancel my plan so that I could go back to the normal plan (with another company) and deal with mild price fluctuations or she could get her supervisor to do so.

Eventually, I found myself with a gigantic bill but with a foolproof plan for dealing with it. The first plan that unraveled was the plan to use email to stay current on bills and my technology just couldn't keep pace with my increasing disability. The second plan was to use my giant tax return to pay off the unpleasantly large bill. It was upsetting to know that I wasn't going to have enough money to replace the furniture for which the insurance adjuster never approved either a list of replacement items or gave me a dollar limit on. My brain is already falling apart so it's not surprising how that slipped.

I was already accepting the terms of no replacement furniture, no vacation and no splurging shopping trip when that plan fell apart. After a decade or so of being able to garnish Melissa's part of our federal tax return, the Department of Education chose this year to carry out the threat. I might not have noticed in a normal year but this wasn't the best year for me to take responsibility and handle things. Some people would relish the chance to say they told me so but I would simply hang up on them or shut my door in their faces. This was the year of serious complications and serious downturns in my health. I defy you to figure any of this out with a screaming headache and vertigo so bad that you fell out of chairs a couple of times. That left us with no money to pay off debts or pay our property tax bill for the year. That's not even including another bill I can't run down but suspect the "I told you so" people might have taken care of it. The shame of that mere possibility is almost enough to kill me.

Nonetheless, it takes more than that to beat me. In 2012, we took out a loan against Melissa's 401(k) plan and we're scheduled to pay it off this year. (The payments were so small that I never noticed the automatic payroll deductions.) So, we can take the money we do have/will get in the next seven days and pay that off half a year early. This makes us eligible to take out a new loan of the same type with no nasty liens on anything. We can borrow enough money to pay everything possibly even including replacement furniture and pay it off relatively painlessly. That's better than effectively taking out loans from the county and the power company at the maximum interest rate allowable by law.

As you can see, I have a backup plan for this which you might call Plan C. Let's just ignore the fact that Plan C will not even get me to where I should have been at this time last year. Let's ignore the fact that I'm in absurd amounts of pain. (Pay no attention to the spike being driven into the side of your head, the swelling in your joints and the fact that your persistent cough gives you whiplash style pain.) I have a plan to survive today and make it to tomorrow. That's progress.

The Real Heroes

Lawrence O'Donnell returned to his MSNBC show tonight after 75 days of recovering from an accident. He and his brother were riding in a taxi in the US Virgin Islands when they were hit by a drunk driver. There were no fatalities, thank God, and Lawrence regained the ability to walk as he put it so blithely. On his first night back, he dedicated most of the show to being thankful. I have spent the last month trying to write about having flashbacks without triggering more. Just on a whim, I'm setting aside that entry for now and concentrating on things for which I am thankful and non-monetary debts that I'll never be able to repay.

For as long as I can, I'm going to try and keep to reverse chronological order. The things and people I've encountered most recently shall go first hopefully going back to the distant past where memories will be distorted as a matter of course. Most of these will be doctors, nurses and other medical personnel. Let's start off with my current medical team mostly involving the pain doc's office. My pain doc is the best pain doc in the state of Delaware (and MD where he also practices)  by far. Therefore, everyone wants to be his patient. Several things happen when everyone tries to go to the same doctor and the kind hearted soul tries to take in everyone. In this era of insurance companies "controlling" costs by underpaying doctors and making their own huge profits, the issue for patients is waiting time. My pain doc is infamous for long waiting times though things have improved recently.

The pain doc and his staff take an enormous amount of abuse over this. People sitting in the waiting room get progressively angrier as time goes by. Since being in an angry room makes my symptoms worse (and I dislike seeing anger so misplaced), I try to diffuse the anger. When I ask people why they stick around after the long waits, they bluster for a while and then admit that it is because the practice offers the best care available in our area. They are too frustrated to tell the staff this and I refuse to blame them. Pain brings out the worst in everyone sooner or later.

I walked into my last appointment and issued a friendly warning. My confusion symptom had spiked for the month. Trying to answer questions - often very simple ones - will cause me to go into the state I've always caused "vapor lock." The words I'm looking for disappear and, all too often, other words replace them. These tend to be those words that might get a healthy person's face slapped or his mouth washed out with soap. Anyone who has ever heard Whoopi Goldberg's comedy routine about a drug dealer named Fontaine might know just what I mean.

Just as a precaution, I told my doctor - the one who treats me and not the head of the practice - that I was suffering from confusion that left gaps in my vocabulary. There's nothing unusual about this for me except for the severity. The effort of saying what I said to that effect gave me an icepick headache. The doctor assured me that she appreciates the effort and is used to being called unpleasant names. I learned shortly before that appointment that I had been calling her nurse the wrong name for some unknown period of time and she never even said a word about it.

The doctor laughed about it and I was prepared to have the shortest appointment in history but she worked answers about what was going on out of me. For once, I didn't want to talk at all because I wasn't terribly sure of what might come out of my mouth next. While I expect a blase attitude about everything being Chiari especially when I'd experienced it before, she was patient and we worked out that I probably didn't need to go to the ER. I wasn't going anyway because I'd been through this symptom so many times before. Of course, there was that time it led to me having life saving brain surgery down the road. This doctor might have made me consider it seriously. anyway but we decided it wasn't necessary.

I'm so thankful for the staff at my pain doc's office. Truth is that I don't know most of them at all but all of them are qualified to work other jobs with less stress.. They would probably take less abuse at a major city's trauma ward but their only reaction seems to be a knowing smile when I thank them for putting up with it all. A lot of their stress comes from working for a doctor with endless energy who wants to help the entire world. What can you say about a doctor who opens a practice where he will deal with nothing but hurting and, probably, angry people all the time? I think he's pretty spectacular if you ask me.

The same thing applies to my second neurosurgeon or the qualified Chiari expert. Those two terms refer to the same man who I agreed not to name on the same day I met him. I went from feeling ever so close to being better to not being able to walk around the house without a cane. I had not fallen since childhood until the Fall of 2001 and then I started falling daily even with the cane over those same months. My original neurosurgeon refused to help although I recognize now that this was the best thing he'd ever done for me. He was in over his head in the first surgery but he tried to help. Despite my symptoms, he could not find anything which meant that he should have been looking for an expert.

Instead, the Chiari community aimed me in the direction of the expert surgeon and I went through this awful process of obtaining Social Security Disability and, therefore, Medicare so that I could see him. Once I was able to see him, he and his staff protected me like I was their only patient. In my first consultation with the doctor, Melissa and I saw hope for the first time in years. My second and more severe decline was explained to me as was the mistake that the first neurosurgeon made. I wasn't going to die though I was unlikely to get completely better. He and another doctor took their combined genius and applied it to this seriously under-diagnosed condition which is misdiagnosed as MS among other things in so many others.

The very first diagnostic procedure done on me was reasonably non-frightening in the abstract yet there I was dealing with the practical consequences. I have spina bifida as most regular readers know so I'm incontinent. When I woke up from the sedation, I was soaked already. They were pumping fluids into me like I had just emerged from the Sahara and they were going right through me as they should. It took me an hour to get over the humiliation of having someone change me. I just wasn't expecting to need that service again in another hour.

That's when the most wonderful nurse I met in the state of New York appeared. She managed to keep me distracted enough by conversation to reduce the humiliation and I asked her to please get me on a regular changing schedule. I'd been brought up to be independent and secretive so waving my hand and yelling were out of the question. This nurse took care of me herself for hours on end and there's no price that can be put on that sort of help. I did the best I could and wrote my thanks into an official note. Others must have joined me because this lovely angel of mercy was promoted a few years later. I can't remember her name. Though I would not publish it anyway, I wish I could remember her name.

There is one hospital horror story though a mild one that I need to tell. I need to write about the problem so that I can tell you about the awesome way it was solved. I live my life as a frustrated perfectionist and closet overachiever. Usually, I'm motivated by fear when I do these things. One of the most painful moments after my first surgery came when I was transferred from the ICU to the regular ward. The floor joints made little bumps that most people couldn't see but I had 30 muscle groups severed and reattached according to that first surgeon. Bumps were incredibly unpleasant during my wheelchair transport.

When the time came for me to be transferred from post-op to what they called a step down ward in New York, I was terrified of the transport. After moving me on a gurney to reduce the bumps (I felt them more in a sitting position.), I asked if I could move myself from the gurney to the hospital bed. The nurse who didn't know me raised me one and suggested that I sit in a chair if I were up to it and move myself there. I don't know who was most perplexed looking when they saw me out of bed then walking (minimally) on the same day as the surgery. It was either Melissa or the surgeon but that's not the horror story.

The "horror" story came the next day when a nurse suggested that I get some exercise by walking around the halls. I did so and had barely sat down when another nurse suggested that I'd heal better if I got some exercise and yada yada. I wasn't sure what I needed to do to please them so I stayed out longer each time including the time I walked through one of those one way access doors by accident and got on a completely different loop. By the time I made it back to my bed that time, my doctor was there and I informed him that I was done walking for a while and that I was in a miserable amount of pain from it all.

He wrote something on my chart that made the well intentioned nurses leave me alone though I did keep up walking some each day. We also put our heads together and figured out what most likely happened. I had the bad luck of a new nurse coming on duty after my walks each time who thought I had been the typical patient resistant to things that might hurt. Each one thought she was getting me out of bed for the first time. Though the "urge to kill" from the local paper's comics page came to mind, it was actually very good care. They just didn't know me and know what I will do to try pleasing someone I'm predisposed to respect.

Let me just admit right now what you're all wondering. I don't remember the timeline very precisely anymore except for a few things. One was that I was kept unconscious overnight after my surgery so I was on my feet the day that they woke me up. Another was that I woke up with one of my all-time horrors. This is just a personal thing but they had a respirator tube down my throat which is probably fine but I panicked. Since I was trying to hyperventilate the whole time, it was most unpleasant. Apparently, I put up some sort of unconscious struggle the first time I woke up because I was tied down the second time but that hardly counts. The nurse who had probably held me down the first time was right there explaining what had happened and removed the restraint as soon as he was sure that I was awake enough to control myself. I also remember one other thing from that specific timeline. I was allowed extra guest time because I was so miserable. Even when I didn't know it, the nursing staff was looking out for me.

My first Chiari surgery was extremely painful compared to the second. I was in the ICU for parts of three days. My surgery was on a Wednesday, I slept most of Thursday and I was in a regular room in time for my lunch to get lost on Friday. There are many reasons why I can't truly resent the first surgeon the way I do others in my past. One of the most important was how I had started to panic in the OR and he kept talking to me until I was out. My biggest fear was not going out all the way but I was out so fast and so completely that I started a thought in the OR and finished it in the ICU. I had "threatened" to tell Melissa that I was ready to go home as soon as I woke up from surgery. It was a joke since I believed there was no way I could remember something through surgery but it was as clear as if no time had passed so I looked up and Melissa to my great relief and greeted her with, "I'm ready to go home now."

The pain hit the next time I woke and this was the worst pain I've ever felt yet a nurse was standing there with a syringe ready for me. I was extremely paranoid about narcotic medication at the time since I had quit smoking just a couple of years before. I asked what was in the syringe through this ungodly pain and she said "morphine" after she put it in my IV. I didn't have time to complain or thank her before the relief hit and I was out again.

Lawrence O'Donnell spoke of the first 24 hours being the worst. I tell fellow Chiarians that it will be 24-48 hours at most before you only feel as bad as you did before the surgery. That may sound awful but it isn't after the first 24-48 hours. I was never in extreme pain while in the hospital for my second surgery because of better pain relieving technology but the first surgery was enough pain for anyone. I learned one simple rule of survival: never turn down pain medication when it's offered to you. They will stop offering all too soon either way but you suffer less if you accept the relief you can get.

Those first 24-48 hours in my local hospital were the worst ever but the nurses were unbelievably kind. My morphine was never late and someone usually talked me through the last ten minutes or so when the relief was completely gone. The male nurse whose name I do remember but will not name was the best. Normally, moving me around in bed required two nurses and a crane (kidding about the crane part) but this guy could lift me and shift me around all on his own. Somehow, this made things so much better for me. I don't know enough about it to be sure since I wasn't all the way there but I'll never forget you, buddy.

By the time I was in the regular room, I was getting cranky. I down from morphine all the way to Tylenol and I didn't even know that it was the version with codeine. I do know that one of my doses should have happened during a shift change so I hurt longer and I probably let a nurse know about it in no uncertain terms. Sorry, everyone. When I try to be nice to the pain doc's staff, it's because I know how nasty I can get. If I can hold the line at polite, I know I won't get to name calling. Yes, there's a story attached to that but it's before I had Chiari surgery and learned to love the meds in their prescribed doses.

My first night in the regular ward was miserable. My poor roommate, Mac, had some sort of head trauma and no one was willing to take responsibility for him so he was stuck there indefinitely. I don't think you could conceivably identify him by that name but I want to keep him in mind. I felt imprisoned after one day and he was there much longer. Someone should remember that. In any case, I snuck out of my room that night with a newspaper so that I could spread it around. To this day, I cannot hold a newspaper well enough to read it but that's what tablets are for. A nurse found me within ten minutes since I wasn't bothering to hide. Someone might have wanted to give me pain meds after all.

Instead of giving me a hard time, she brought me out to meet the "night shift." This was a mixture of long term patients like Mac (but not including him since he slept well) and short term like me who couldn't sleep much. The nurse let us play cards and read or whatever at her station and let us drink coffee since there's nothing worse than being half asleep. There might have even been snacks involved. I got to depend on the night shift in my last three nights there. They kept my grousing under control because it was clear all of them were in worse shape than I was and they took it better. I rose to the challenge.

In any case, I might have had a tendency to flirt with other nurses from time to time but it was true love with this one. It's not the sort of love where you remember each others names much less ever see each other again but I was head over heels nonetheless. Not only did she tolerate the night shift but she could take your vitals and do a cognitive check all without waking you up all the way. She also taught me the unwritten rule I've followed ever since. It doesn't matter how much you wander in acceptable places as long as you are in your bed at medicine, checkup and meal times. Since I will not tolerate hospitals when I'm well enough to break this rule anyway, she gave me pure gold. Now, the acceptable areas part is a key to the whole thing. You do not wander into any room marked restricted or into another patient's room without a specific invitation nor do you leave the building without being discharged. That's all common sense to me especially the last part based on the draft alone.

There are a lot more medical people to thank but I'm getting tired again and I'd like to post this. Lawrence was amazing last night especially with the sickie humor that I identified with so much. Keep the beard, man!