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.
