A CHRONICPAINFUL JOURNEY

written in the 1990's


 It is my fervent belief that chronic pain is its’ own little planet that nobody should ever have to visit. I came to this after discovering just how difficult it is to live life through pain’s filter. For me, the pain is caused by inoperable tumors on my spine due to a genetic disorder called Neurofibromatosis (NF). Although generally benign, these tumors occasionally “transmigrate” to malignancy. Not everyone with NF has tumors (NF has many different manifestations) and not all tumors cause pain, even though they grow on nerve endings. I felt no pain the first 45 years of my life.


But the old ones grew and new tumors developed, and now without significant doses of pain medication, I’m in agony. I can only address what chronic pain is like for me and how utterly helpless I feel when it’s grip is particularly excruciating. When the pills, the meditating, the breathing and the distracting do no good. When, on a scale of one to ten, it’s always vacillating somewhere between three and eight. When friends and family call to ask me how I am, and I no longer know what to say. Should I be honest and risk alienating them? Should I pretend everything is just fine when it isn’t? Regardless of the answer I devise in the moment, I do my best to turn the attention away from me as soon as possible for a couple of reasons. First, I sincerely want to know what is going on in the lives of my friends and family, and second, I get sick of talking about my pain.


Thankfully, in spite of being a challenge to be around at times, most people have stuck by me. But unbelievably, there are those who believe I am responsible for my condition and that I need not “demonstrate” that I’m in pain when around them. Even if I do hold the key to being healed, when the pain hits, my reaction is visceral and not meant as a “demonstration”. Other people’s beliefs, no matter how well intended, are often what makes the experience of chronic pain such an isolating one. Whether they think I chose this for myself, or that it’s Karma, it’s all very shaming. Sick people don’t need shame added to the mix. Still, I believe we are first and foremost spiritual beings and as such can, when we put our hearts in it, control a certain amount of our human experience. However, I also believe there are things we must endure as part of that experience, and learning to accept that is another way for us to grow. We need not transcend every card we are dealt. And like everything else, in the end, we need only to be honest with ourselves and must let go of seeking and obtaining the approval of those around us.


Due to my condition I am now unable to work and got a harsh lesson in just how poor a job our government does to protect its truly needy. It often felt like the people (called gatekeepers) in the offices of disability, welfare and every other government agency I dealt with were there to make sure I didn’t get what I needed. Understand, in many instances, the money you seek is yours. If you worked, you paid for it, and in my case, that’s 32 years worth of taxes. That’s not a handout. Most people don’t understand that the Social Security Administration has three arms: retirement, survivorship (survivors of earned income workers) and disability. The money is supposed to be there for times like this; people shouldn’t have to grovel for it. But you do. Most have dealt with gatekeepers at one time or other. If you’ve ever filed for an insurance claim, you’ve dealt with a claims adjuster. They too, are gatekeepers, which means they review the claim and decide whether it should be paid. And nothing can prepare anyone for what happens when you apply for disability.


When you are least able advocate for yourself and too ill to get through the myriad of forms and endless paperwork to get your claim filed, you best steel yourself against a bureaucracy that wants you to give up. I asked my caseworker how people with language differences or other challenges do it and she looked me straight in the eye and, without a trace of irony replied, “They live under bridges.” I was lucky and was approved after my first appeal. But it took letters to government officials and in the end, an attorney. It also took 18 months, which is on the short end of the spectrum. Unfortunately, unless there is a cure my disorder is not going away. It may not get worse but on it’s own it won’t get better.


 This doesn’t mean I have given up. I write letters to doctors anytime I hear about a possible treatment, sending them my medical records and pestering them until they respond. There is no other way. You must be willing to search for, and be open to, every known treatment no matter how unlikely it may sound. You must incorporate all known health modalities and your mental, physical, emotional and spiritual beliefs if you are ever going to have a chance at wellness. But there is a big difference between a spiritual life and a fantasy one. I long ago gave up thoughts of a fairy godmother coming down from the heavens and waving a magic wand making the tumors disappear, or an angel walking through the door to tell me that G-d has a message for me.


 If G-d has a message for me, I’m just going to have to keep looking for it in the everyday things, where most messages and miracles dwell. In the meantime, pills are my lifelines. The everyday problems of having chronic pain are uniquely challenging. People can see the pain in my face even if I’m having a “good” day. And when my pain soars in public, I must explain to people I’m not having a heart attack so they don’t call the paramedics. So instead of concentrating on my breath, which helps with the pain, I must first make sure strangers are okay. I don’t want to share my problems with everyone, but sometimes circumstances force me to do so before I am ready. Especially when it comes to meeting a potential life partner. Not being open book is challenging for me anyway, but this is a difficult secret to keep. Something simple like going out to dinner and a movie becomes a major issue. When do I tell? How do I broach the subject? Is this something I share immediately, or do I wait to see if I like him first?


The latter makes the most sense to me but unfortunately, as I mentioned, the pain shows in my face. Healthy people have the option of playing their cards close to their chest, not revealing things they think aren’t appropriate until the time is right. People in chronic pain have no such option. So I gave up looking for a life partner years ago because it takes energy I don’t have. I have been learning to live without the things we are “suppose” to have: money, success, marriage, children — heck, even the bible reads, “Man is not meant to be alone.” And the media? Fogetaboudit!! Movies, books, and music — it’s hammered into us almost from the moment we come flying out of the womb: You’re nobody ‘till somebody loves you. Luckily, I was healthier during my twenties and thirties and had a chance to experience romantic love. Now, my friends and family must be enough. And I know that is no little thing. Since I am by nature caretaker and worry ad nausea about everyone around me, I sometimes fail to recognize what I need. I realize this is hardly unique, but add disease or disorder and the ride gets especially bumpy.


 For controlling types, chronic pain and illness in general is challenging beyond words. There is little if any control when it comes to chronic pain. If ever there was a lesson about how truly out of our hands our lives are, this is it. This disease has been teaching me things all of my life, I but I often fail to recognize the lessons. I know it has helped shape me. Of course, whatever our circumstance, whatever our challenges, it shapes who we are. The question is, do we acknowledge it, fight it, ignore it, challenge it, or deny it? If I let it, it stops me in my tracks and keeps me from moving forward. Sometimes I let it because I have no energy to do anything else. But I think there is possibility even in that. Even when I have no energy left and think it has beaten me today, this moment, there is the possibility of seeing beauty in that. Slowing down is not the end of the world. Not getting something done should not feel shaming. And not getting what we want, what we dream of having, what we pray for, is also an opportunity to learn. If you have spiritual beliefs, not getting what you pray for is a separate kind of challenge. It is one thing to have what we want in life. It is entirely another to want what we have. Try that on and see how it feels sometime.


Do you want your body the way it is? Or do you want something different? A smaller nose, less wrinkles, less weight? Are you okay with your financial situation? Your friends? Your family? Yes, some things we can change. But even if we can change them, wanting things just the way they are is very powerful and will actually promote change if change is what you really want. Praying for a new car, a great job, or the perfect relationship is one thing. But praying for wellness, whether it’s for yourself or someone else, and not getting it, is a whopper of a lesson. Hopefully, if it’s a lesson we must learn, it’s the kind we learn later in life after we’ve had a chance to taste a little “success” whether it’s with career, marriage, children or whatever it is you want in life. Being born with a disease challenges every one of those aspects of life. The twisted truth in all this is that when I am in a rage about my situation, the doctors, the pills, or the system that has let me down, that is when I have flashes of my own power. These flashes usually include a spurt of euphoria, the feeling that everything is going to be all right. The notion that right now, right this moment, I could die or I could live, but either way, it’s going to be okay. But these moments are in no way the norm.


The norm is hoping that the effects of the painkillers last from one dose to the next. It’s hoping that they work the way they are designed to, and that I will remember to take the next dose. The joke however, is that if I’m feeling okay, I sometimes forget to take the next dose or convince myself I don’t need it. Then the pain is twice as bad when it comes. And it will come. So take advantage of legs that can walk, run and jump, arms that can lift and hug, toes that can wiggle, fingers that can write, and point, eyes that can see, ears that can hear and all the rest of it. Use it. Enjoy it. If you believe in G-d, give thanks for it. Pray, if you want, to always have it, but try not to feel cheated if you lose it. And remember your prayers are probably answered. They just aren’t always the answers you wanted.