Sometimes in life you have to get a little lost before you are truly able to find your way.

Posts tagged ‘Friends and Family’

Ultimately Selfish

I’ve been debating if I should tackle this issue or not. But it keeps worming its way back into my brain so I’ll take that as a sign that I should. After this I really hope to move on to some lighter issues for a while! There was an article published in the Huffington Post called Stop Calling Suicide Victims ‘Selfish.’  While I recommend reading it in its entirety (it’s not very long), the gist of it is that we should not judge those who take their own lives because suicide is the result of severe mental illness. The author makes the point that we don’t judge victims of other fatal diseases. She does a good job, in my opinion, of pointing out that it is wrong, and in fact, impossible, for those who have never been suicidal to even begin to understand what it must be like, and therefore, they should not, and cannot (fairly) judge this action. One of my favorite quotes from the article: “I’ve felt sad before, yes. I’ve felt bad about myself before, yes. But I haven’t actively wanted to die, so why should I pretend to know what that’s like? I’ve had the flu before, too, yet I don’t know what cancer is like.” I appreciate that. But I disagree with her when she says that suicide is not selfish.

Here’s the thing… yes, more needs to be done to get help to people before they reach this point. The taboo that surrounds mental illness from anxiety and depression to schizophrenia all needs to be a thing of the past. But suicide is a tricky beast. it is a last resort. It is terrible and awful and clearly speaks to a kind of hopelessness and misery that, as the author of this article points out, cannot be even imagined by most people. But in the end, it is still a choice. It’s a terrible choice. And in that moment, I assure you it does not feel as though there is any alternative. But even I cannot deny, having been in that place, in that moment, I made a decision. I own it and all of its consequences. Aside from the obvious fact that it speaks to a kind of pain most people cannot fathom, what is perhaps worse, or at least as awful, is that it doesn’t end with the person taking their life. Its reach extends as far as their presence in life is felt – to every friend, family member, coworker. It tears people apart. It’s hard enough to lose someone you love to something inevitable. But to know that the person you love actually decided to make this happen…what could be worse?

So I understand the anger and the characterization of of suicide as being selfish. It’s a tough pill to swallow, but at the root of it all, if it is part of the overall sentiment, which includes compassion and at least an attempt for understanding, I think it’s a fair assessment. I’ve been on both sides of suicide. Someone I love taking their life, and nearly taking my own. While the words hurt, they are not wrong. I put the people I love through the worst kind of hell. And despite what I was feeling and what drove me to that point, I cannot deny that it was a selfish choice. I can’t deny that I was putting my own misery and hopelessness ahead of the pain and suffering I was about to cause. Those are facts. They suck, but they’re real. And they have real consequences.

When someone plans in as much detail as I did how they are going to die, they don’t think about what happens afterwards if they survive. You’ve worked hard to minimize impacts once you’re gone…making sure your loved ones aren’t the ones to find you, for example. But surviving and facing those who you have hurt is never a part of the plan. Thinking about how you will earn back trust or repair relationships isn’t a part of the plan. The plan is to stop the pain, the hopelessness, or whatever awful thing has taken over your consciousness. The plan is to simply stop being, at what ever cost. The road back, when you fail, as I did, is incredibly difficult. Facing the pain you’ve caused, trying to find a way to make amends for something that is almost unforgivable. And even when people forgive, trust is something that is, in many cases, beyond what your loved ones can achieve. These are consequences of a choice. I face them every day and I accept them. What I did was selfish. And I am blessed that so many in my life have forgiven me. I do not get frustrated when I have to offer extra reassurances that I’m OK on a bad day, or take measures to ensure that those most deeply affected are confident that I am safe.

So while I disagree with the author about suicide being selfish, I think the bigger, far more important message is that people are suffering in unimaginable ways. Some of them out loud and in the open. Some silently and alone. As a society, we have to stop judging. We need to be more accepting of mental and emotional illness and distress and collectively find ways to support those most in need. Open dialogue, collective awareness and sensitivity combined with more widely available (and effective) therapy could change…and save…so many lives.

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Hold On Pain Ends

I learned the most wonderful new acronym recently: Hold On Pain Ends. It’s funny how simple it seems, but how difficult it can be to practice sometimes. I’ve written before about what it means to keep on hoping through desperate or painful or sad times. But this phrase carries a lot of special meaning for me. I recently stumbled across a picture of myself from nine years ago. It stopped me dead in my tracks. I almost didn’t recognize the face staring back at me. Young. Vibrant. Happy. Successful. I wondered how just nine years could age me so much. And here’s the real kicker – that photo was taken at about 1:30 a.m. after working nearly non-stop for three days on a big proposal at my consulting firm. I should have looked ragged and tired and worn. I couldn’t even physically work those hours today, much less look good doing it at 1:30 in the morning the third straight day.

So what was it about that time in my life? I was five years into this migraine ordeal. I was clearly working way too much. But I had held on. At times where there seemed absolutely no reason to believe that my pain would lessen, much less end, that I could find happiness given some of the struggles I was dealing with, reeling from the loss of some of my closest loved ones. I held on. I continued to HOPE. Against reason, against odds. And one day, 6 months prior to that picture being taken, I was put on a new drug protocol by a truly remarkable team of doctors at the Michigan Headpain and Neurological Institute in Ann Arbor, MI. And the pain became less. It strengthened me. It renewed me. When I say I look at that picture and I see success, it is not because I was making a ton of money or even that we won that contract; we lost it in fact. But I was more able than I had been in a very long time. I was able to work for days on end with almost no breaks for sleeping or eating. I was able to sit in that conference room, working through ridiculous amounts of paperwork, barking orders at people three times my senior for their lack of focus and stop to smile pretty for the camera for my new employee photo that just had to be taken at that exact moment because it was the first time I’d been in one place in the office long enough to for the girl from HR to track me down! Tt photo

All that is well and good, but putting things in perspective, there were five years there prior to that moment when one treatment after another DIDN’T work, right? And during that time I dealt with some things I wouldn’t wish on my worst enemy, both physically and emotionally. I had learned a hard lesson early on in this migraine thing. HOPE is essential. But so is managing your EXPECTATIONS. If I had continued, as I did in the beginning, to EXPECT each new treatment or medication or procedure, or whatever, to work, I would have lost hope. I have not a doubt in my mind. Learning early on that most things were NOT going to work allowed the treatments that have had positive impacts be more successful, their results more genuine and the overall effects on my pain, my life and ability to maintain hope exponentially greater than if I went into each one expecting it to be “the one.”

When that treatment regimen that I began in July 2005 started working, it hit me out of the blue. The alleviation of my symptoms felt like it fell right out of heaven, knocked me on the head and bounced half the pain right out of there! There was no false positive. No placebo affect. I had approached my treatment for so many years with the “hope for the best, expect the worst” frame of mind that when real, measurable improvement came, it sent me soaring. I couldn’t doubt it. And for a long time after that the quality of my life truly was immeasurably changed. It was that change, in fact, that allowed me to deal with the death of my fiance, by far the most difficult thing I’ve ever experienced. And that series of events, I know, happened in sequence just as it was meant to.

The marrying of those two essential functions – managing expectations and maintaining hope has saved me so many times. But I failed at one of them in an extraordinary way last year. After the last post, Suicide Won’t Fix It, I got a lot of feedback and a lot of tough questions. Some people were shocked. Some were sad, angry, confused. All of this, I expected. But the only explanation I can offer is this – I failed at managing my expectations. When I learned that I was a candidate for the neurostimulator implant surgery, I allowed my doctors to set my expectations at a completely unrealistic level. I envisioned no pain. I saw doors and avenues that have long been shut flinging wide open again! I saw absolutely limitless potential, every possibility available once again. I saw a new life. I saw a new me. After 12 1/2 years of very successfully managing my expectations, I made that one very grave mistake. And I rode the high of those expectations all the way to the moon. And when reality clashed with those expectations, I lost. I fell. HARD. It was the crushing blow that at one time I had been cautious enough to protect myself from, but from which I was at last was feeling the impact. When I came crashing down from that high, I crushed every ounce of hope I had managed to hold on to for nearly 13 years.

It’s one thing to live with chronic pain and to know that even with limitations, there are still some things that work; moments of feeling well, daily success stories. It is quite another to suddenly think you are on the brink of a new life, and to fall crashing back into that seemingly bottomless pit. So I urge you – whatever it is you deal with – migraines, fibro, depression, anxiety – manage your expectations and maintain your hope. It comes in many forms, but one way or another, in small ways or in big ones, if you do Hold On..the Pain does End.

hang in thereThere are some other interesting reasons why this acronym is so close to my heart. And this goes to show that things really do come full circle. When I was in middle school, I was obsessed with horses….mine in particular. Her name was Hope. I didn’t name her that; she came to me that way. And it was perfect. I had several posters in my room at the time. One was a herd of wild horses galloping down a beach. It was magnificent and there was one horse who reminded me so much of my Hope. And directly across from it on my other wall was a very famous poster with a picture of a tiny kitten hanging from a branch with the words “Hang In There.” I remember reading those words so many times over and over during difficult moments. And now, with this fabulous new acronym, those three wonderful things from my childhood – my horse and my two favorite posters are melded into one incredibly powerful phrase…Hold On Pain Ends. Some day I hope to be well enough to run a wildlife rehabilitation center. I have known for many years that if I am able to do it, I will name it New Hope Ranch. This lesson; this phrase; this entire lifetime of experience shows me that it is still the goal I must keep holding onto and keep striving to reach. court and hope

Suicide won’t fix it.

In a dark and hazy cloud my eyes slowly started to open. I couldn’t breath. I couldn’t swallow. I was choking. I reached for my throat; I needed air. But my arms moved only inches before the restraints arrested all efforts to stop my choking. My arms were tied. My legs were tied. My upper body strapped in place. I tried to lean forward. A woman rushed at me and pushed me back against the bed hard and told me to relax. RELAX? How could I relax? I was choking. And apparently restrained. But why? Where was I and how had I gotten there? She exited the room in a rush. I couldn’t move my arms enough to reach my face but I could lean forward just enough to reach the finger tips of one hand to the thing that was choking me. I tugged. Pain. I pulled. More pain, but progress. I yanked and with a painful, pressure-laden, tearing movement, the tube that was choking me finally came free of my throat. Relief came, but not without a good deal of pain. And blood. The woman came back. I looked at her and realized she was a nurse. I was in a hospital. She spoke harshly. “What have you done?? I hope you’re proud of yourself, you certainly damaged your vocal chords, perhaps irreparably.” She was right. But that was the least of all of the consequences of what landed me in that hospital bed.

The precise sequence of events is still a blur. My mother was there. She looked tired and scared. I began to remember what I had done; why I was there. I shouldn’t have been there. I should be dead. Then my heart sank. If I wasn’t dead; if I was here, in the hospital, someone had found me. A fear like none I had ever known gripped me. In a painful whisper I asked,  “Did Lawrence find me?” “No, my mother said, trying to choke back the tears that were falling. “Is he ok? Did he know I was ok?” I knew my mother could not have been the one to find me. I had made sure of that. But Lawrence was a different story. If he had found me in that state I could never have forgiven myself. But still my mother stood there and listened to my first words, my first concern be directed at someone she had never met. Someone I barely knew. In some ways it was a pretty good indication of how screwed up I was. My first words should have been “I’m sorry.” It would take time for my thoughts or actions to make sense. It would take time to find all of the forgiveness that was due. To my family, my friends, even to myself. I had done the unthinkable. I had been cowardly and weak and had tried to take the easiest way out of my pain. I had tried, and nearly succeeded in killing myself. Had the paramedics reached me mere minutes later, I would have been gone. My plan would have been a complete success, and my life, a failure. And I would not be here to tell of it. I would not have had the chance to beg for forgiveness from everyone I hurt. I would not have the strength to face whatever comes, knowing I have already faced the very worst, and survived. And I would not have the opportunity to tell you that whatever you are feeling is absolutely valid. And if you are considering taking your life, I get it. But I hope you choose differently than I did.

This is not an easy thing to talk about. It is not easy to think about. And I know it is not an easy thing to read. For some who know me this will be the first they have ever known about my suicide attempt. And to each of you, I am truly sorry. Some think I should not write about it. I should not expose it. But I have an obligation. Because out there, among the masses who might stumble upon this post, there are some who are there, in that dark and lonely place wondering, planning, deciding. I beg of you – please keep reading. Where it seems there is no other way, where there appears only darkness and pain, I promise you, there is hope. And I know this only because I have walked through complete hopelessness and emerged on the other side, just barely. And I am so grateful for that. For the chance to tell you there is another way. There is light. There is a reason to live. And whatever guilt or darkness or fear or stigma is eating away at your will to live – SCREW IT. You are where you are because whatever is happening in your life seems too much to overcome. And you have no idea how many of us understand that. I’m not trying to persuade you that your feelings aren’t valid. Just the opposite, in fact. They are very real. Real enough to convince you to consider death as the best or only alternative. But there’s more.

The circumstances that brought me to that place are fairly irrelevant. Not because they weren’t real or valid or enough. But because these circumstance are different for everyone. The results, however, are the same. Being suicidal comes from something different for each of us. Those close to me always want to know how I could have thought death was the only way. In truth, there were times in my past when it actually appeared to have made more sense that I would have been suicidal. And there will be people who ask you this question, who will not understand how you could think death is the only way. All that means is that they are lucky enough not to have experienced being where you are. It is not judgement. It is fear and love wrapped up in what often feels like judgement.

The circumstances don’t matter. That sounds harsh, I know. But it’s the truth. Because no matter what each of us is going through, no matter what has brought us to this place of unimaginable suffering that we know we cannot bear for one more moment, the only thing that matters, is that those circumstances, all put together, no matter their enormity, are, above all else, TEMPORARY. In fact, all of what we experience is only temporary. The fleeting highs and the apparently interminable lows. The good days, the bad days. Our triumphs and our losses. All of these things that make up our experience of life are temporary. And to use a permanent, irreversible action, suicide, to deal with/escape/end/fix…however you choose to describe it, is…this decision is, at its core, illogical and flawed.

I wish I had known so many things that day. I wish I had known that despite the hopeless way I felt, hope did still exist, and would find me again. I wish I had known that the enormity of all of the things that I was dealing with, while they felt too much, too big, too heavy, too powerful to overcome, would, in fact, be overcome. Not all at once the way I felt I needed, but little by little; they have been…they are being overcome. Some part of me wishes I had known the true nature of pain that I was about to inflict on those who love me most. That I could have foreseen the pain ingrained in every fiber of my mother’s being because of what I had done. But perhaps it’s best that I couldn’t grasp that in those moments because for me, guilt was a heavy weight on the scale inching me towards suicide. From this side of the choices that I made that day though, I live with the fact that I cannot erase the permanent image of me lying in that hospital bed, bound to it, unconscious, with a machine breathing for me and tubes coming out of me that she has etched in her memory. I wish with all my heart that I could take that away. I wish I had known the panic and terror in the hearts of everyone who was desperately searching for me, knowing that each minute that passed by could be the difference between life and death. I wish I had known that less than a year later, I would be sitting here on my couch in my new apartment, minutes from the ocean, having overcome so much of what I thought that day, in those last moments I would never be able to live with. I wish I had the voice of someone who had been in my shoes speaking into me the strength and hope that might have made the difference in the choice between life and death. Or simply a hand to hold in silence that might have delayed my action long enough to change my mind.

Suicide is a funny thing. For those who are truly suicidal, what many people do not understand is that it can be the one, solitary thing that we feel we have control over. It feels like the only thing we can do to change our circumstances, end our pain, fix what is broken. To an extent, that is sometimes true. We do have control over it and many things in life are out of our hands. But the flip side, the reality, the truth we find hardest to see, is that we also have control over the choice to live. To find a way, however impossible it seems, through whatever brought us to that edge. We have that choice. And choice is power.

Suicide is alluring, almost intoxicating because in our darkest moments is promises to fix everything at once. It ends all the pain and suffering and hopelessness in one fell swoop. That promise, that idea that “suicide fixes everything at once”…it’s crap. It’s not real. It’s just a way to avoid facing the harder, better, stronger, braver choice to get through it all…whatever your all is, one tiny step at a time. Don’t feel like you have the strength to take another step? Fine. You crawl. You inch. You slide one hand forward before you can crawl. You make a movement and it is PROGRESS. It is substantial and brave and powerful. It says FUCK YOU to everything that is breaking you down. It is success and it is HOPE.

And no matter how alone we might feel at the bottom of this pit – we are never truly alone. Our actions do not happen in a vacuum. We do affect others in profound ways that we cannot fathom. No matter how alone we feel there are people who will mourn, who will take our actions upon their own shoulders and walk heavy with misplaced guilt, much the same way many of us have/are doing. If you have not a soul in the world who you believe will care if you are gone, there is a paramedic who will be unable to save you. A coroner who must examine you. Someone, some people will suffer from your actions. I say this not to inspire more guilt. The choice we make  must be about ourselves, not those around us. I say this to remind you that no matter how isolated you feel,  you are never truly alone.

I won’t go in to all of what kept me alive when I was absolutely, resolutely determined to die that day. For now, I will say this. I had planned meticulously. I hurt more than I ever had dared to imagine possible. I was 100% sure of what I was doing. I was crumbling beneath the weight of things I no longer had the power to keep from crushing me. But I was WRONG. I know that now. And if you are in that place I promise you with all that I am, you are wrong too. You can, and should CHOOSE to live. That much you do have the power to do. The rest of it, whatever it is, no matter how much it hurts, will someday be behind you. But first you have to make that choice. Take that step. Move, just a little – forward. It is worth it. YOU are worth it. You are more powerful than you can, in this moment even conceive. I know you are, because I was you. And today, I know beyond a shadow of a doubt, that I am more powerful than anything that life might throw at me. And despite the years of falling down into that pit, in that place where the cold and the dark and the fear and the hopelessness and pointlessness all collide, my choices can keep it all from owning me ever again. And your choices, today, can lead you out of it. So choose. Be braver than I was. Be the strength you don’t dare to believe you have. Do the one thing you feel you cannot do. Choose to live.

There’s no Trying on Everest! DO it!

35Tomorrow I turn 35. I have no big plans – just a quiet dinner with family, but still it feels like one of those “milestone” birthdays. I’ve been reflecting on the path that brought me here. I’ve mulled over all of the challenges and choices and lessons that brought me to this age, this frame of mind, these circumstances, the state of my health and of my relationships. I have looked back at years of thoughts and dreams and accomplishments and failures immortalized in ink. In journals, unsent letters sitting in boxes, tiny scraps of paper carelessly tossed into drawers. Reliving what the world looked like through the eyes of younger versions of myself is such a uniquely interesting experience. To celebrate, I thought I would share two gems I found. One is scrawled on a piece of scrap paper that seems to wind up in different boxes each time I move (apparently saved many times over from the recycling bin). The other is from a journal that documented a particularly difficult year.  I’ve read both of them many times. I find myself wondering about the moments when these thoughts spilled out of my brain, not sure exactly what prompted them at the time, but always amused that they remain relevant and empowering, no matter where I am or what I’m facing.


I have dreamed of being a writer, a dancer, a mother, an explorer, a journalist, a teacher, a scientist, a wife, an advocate, a traveler, a well person….my list goes on and on. Today, on my birthday, I dream most of being an independent person, open to new love, with the possibility of a career. They might not seem like big dreams, but from inside the walls of the pain I live with every day – they are my Everest, and I am busy collecting the tools I will need to conquer it. Life keeps on happening, and so do I.


 

TOMORROW I WILL DO BETTER. No matter how good or bad or mediocre my days are, I will always strive to do better, to be better. I will challenge myself to dig deeper; to think bigger, to be more generous, to love more openly, to be more kind. I will try harder to forgive others and to forgive myself. I will concentrate less on everyone’s faults (including my own..especially my own) and to BE MORE POSITIVE! I will SMILE more and LAUGH more and DO more to create happiness. I will focus on the good around me and in me. I will endeavor to learn more and cultivate new skills, new friendships and new hobbies. I will be more productive. I will have more fun. I will be a better friend, daughter, sister, self…

Nothing in this world ever changes if we focus on besting one another. We must challenge ourselves. Progress comes when we commit not just to TRY, but each and every day to DO better than we did the day before. So today, and every day, I promise that TOMORROW I WILL DO BETTER!!!

35 papers chloe

 

 

Migraine, Fibro and Gratitude.

Anyone who has followed this BLOG or who knows me personally is aware of my battle with intractable migraines. I have not discussed fibromyalgia here in any detail. For a very long time I didn’t feel I should even identify myself as someone with fibro. I have friends with fibro and have read the work of others living with fibro that is so invasive and debilitating that the few symptoms I had that led to my initial diagnosis many years ago felt insignificant. It felt like an insult to those who had “real fibro” for me to claim to be affected by it at all. About six months ago, all of that changed.

Fibromyalgia is a progressive condition (a syndrome rather than a disease) that affects “an estimated 10 million people in the U.S. and an estimated 3-6% of the world population” according to the National Fibromyalgia Association. That’s a lot of people in a lot of pain. But a large portion of those suffering from fibro go undiagnosed or misdiagnosed for years. The symptoms mimic those of many other conditions and there are still many in the medical field who refuse to even recognize fibro as a legitimate or real condition. Thankfully its recognition and thus its treatment has been rising steadily over the last decade.

I have no idea how long I’ve actually had fibro, because there was so much overlap between my fibro symptoms and those of my migraine condition and the side effects of several of my migraine medications. I was diagnosed with it about 7 years ago. At the time my symptoms were relatively inconspicuous. The most bothersome of any was the pain that was caused by even a light touch on my arms. My boyfriend would put his arm around me and rub my arm gently and it felt as though he were digging his fingers in as hard as he could. That seemed like small potatoes. It was nothing compared to what I dealt with from my migraine condition and nothing compared to what I knew others experienced from fibro. If you’ve read Mary Gelpi’s incredible blog, Fibromy-Awesome, you know exactly what I’m talking about.

Illustration of the Reed Procedure

Illustration of the Reed Procedure – yes – I am the real deal bionic woman!

So what changed? Some of the symptoms from my migraine condition eased up after my neurostimulator implant surgeries (the Reed Procedure). I am on fewer medications than I have been at any other time in the last 13 years (only 16 a day! Woo-hoo!), and consequently dealing with far fewer side effects. Seemingly out of nowhere, my body turned alien. I started waking up with my hands so swollen I couldn’t make a fist. My legs and feet swelled so much that from the knees down I was a clone for someone 9 months pregnant and ready to burst. Many mornings my entire body is so stiff that merely getting up out of bed requires a series of countless tiny movements to stretch and ease the tension in every joint and muscle. Days of exhaustion so severe that I cannot do anything that is not an absolute physical necessity have become common. One day the joints in my left thumb were so painful when I awoke that it actually felt broken. My right wrist started intermittently hurting enough that I thought I must have started sleep walking and done something terrible to it. All of these symptoms and more. Apparently out of thin air. Some of them I recognized as fibro right away; others I had no idea could be part of this condition that I had essentially been denying I had at all for nearly a decade.

I was frustrated. I finally made a bit of real progress with my migraine pain for what? To swap it out for increased fibro pain? What in the world had I done to deserve this? It seemed so unfair. Then another thought occurred… what if I had had to deal with all of the fibro pain on top of the worst of my migraine pain? What if this sudden explosion of symptoms had occurred not following the surgeries that alleviated one condition, but had coincided with the onset of my intractable migraine? Could I have survived it all at once? Maybe this wasn’t the least fair thing in the world, but the greatest stroke of luck. Perhaps I should thank God and all my lucky stars that this is happening now, and not years ago when the pain in my head nearly drove me to take my own life.

I have lived by the saying “everything happens for a reason” my whole life. I believe it with every fiber of my being, even when it makes me curse whoever is in charge and when I know there is no way I will ever understand the reason. I do not believe in coincidences. I don’t believe in random chance. I have never been a religious person. My family identifies as Protestant, though we never attended church regularly, and only sometimes on Christmas and Easter. I attended Mass with my best friend as a child periodically. Her family was deeply religious (her father was a former priest). Mostly we giggled and whispered and got in trouble. I have, however, always believed in what some people refer to as God. I have always believed that our souls exist beyond the life of our bodies and that there is something somewhere greater than us all. It has been, at times, an internal battle with the scientist in me. I believe in evolution. No man in the sky created all that is in a week. But I look around the world and I find it impossible to ignore that everything is connected. There is nothing that happens in a vacuum or that does not have an effect that reaches far beyond what we can see.

A few years back on a trip to Grand Bahama Island to visit my father, I stood in a coral cave staring into a pool of fresh water sitting atop salt water. The experience was overwhelming. I found it nearly impossible to leave or resist returning once I had. The way the light came in through the collapsed ceiling where the less dense coral had eroded and eventually given way was amazing. It bounced around beneath the water’s surface making it nearly impossible to tell reflection from surface. The depth was impossible to gauge. The colors were more beautiful than any I had ever seen. It was, and continues to be one of the most awe-inspiring places I have ever been. For me, it was a deeply spiritual experience. My father asked how my trip to the cave was and I told him (after several days of discussion about religion) that the cave was my church. I don’t need a building in which to worship. I don’t need a man to tell me what God says, or to be my messenger. If I want to talk to God I’ll do it myself. I don’t mean that to sound offensive; it’s simply what I believe. My relationship with God does not require any middleman or cathedral.

I know it seems I have gotten off course here with this discussion, but to bring it back around – what I have realized is that I don’t have control over the fact that I have intractable migraines or fibromyalgia. I didn’t have a say in when they started or how significantly they have affected my life. I could allow myself to become bitter and angry that when I started to experience a small amount of relief from one condition, the other flared up with an intensity I had always been grateful not to have experienced. But I choose not to do that. I choose not feel that way. I choose, instead, to be grateful. Grateful that I have not been dealing with fibro at this level for all of my life, or for the first 12 1/2 years that my migraines were completely unabated. I choose to believe that this series of events has unfolded in ways that I might not understand, but are not without reason. I choose to believe that even if I am meant to experience both of these conditions, something greater than us all protected me from experiencing them both at the same time in ways that were more than I could handle.

For those who know me best, much of this discussion will come as a shock. The girl who has studied and worked in the sciences going on about God and spirituality will seem a giant contradiction. I have spent years being critical of those who are deeply religious. Catholics, in particular. The “word of the Lord” as written in the Bible has been at the very heart of many a heated discussion with those who try to use God as an excuse for hatred and bigotry. But we all have a right to our opinions and our faith. That does not, however, excuse any harm we inflict on others in the name of religion or spirituality.

Jesus Calling by Sarah Young

Jesus Calling by Sarah Young

I will conclude with this…a thank you to my mother who gave me a book of daily devotions (Jesus Calling by Sarah Young) that I would never have picked up on my own. She handed me her copy in the midst of a very dark moment when pain and fear and exhaustion were getting the better of me. She didn’t read it to me or insist that I read it. She simply left it by my side. Since then I have read it every day. While some of what is said in this book is at odds with what I believe, the messages, for the most part, have been not only comforting but kept me from falling into weak patterns without purpose or constructive thought. I will leave you with one of my favorite passages that zeros in on something that is both difficult and essential for everyone with a chronic illness;

When you are plagued by a persistent problem – one that goes on and on – view it as a rich opportunity. An ongoing problem is like a tutor who is always by your side. The learning possibilities are limited only by your willingness to be teachable.”  

Bittersweet Victory

I had a big win recently. My request for an expedited hearing before the Social Security Administrative Law Judge was approved. We waived the right to a 20-day notice and were notified on January 21 that my hearing would take place on the 24th since there had been a cancellation. For three days there was a frantic race to get ready. A race to pull together all of the arguments and facts and answers. After years of waiting, suddenly it was a rush to pull it all together before Friday. I met with my lawyer. I spoke to my family. I got letters from friends, family members, previous doctors. And then we went.

I sat in a tiny room with an awkward setup staring up at the man who would decide my fate. He was kind and comforting and patient and reassuring. Nothing like what I had imagined. I think that I’ve just been fighting so hard for so long that it was actually a little unnerving to not feel as though I was facing an opponent in that room. My lawyer gave an opening argument. The judge asked questions. My lawyer asked questions. Then the judge started to move to the “VE,” the vocational expert. These are people whose job it is to find any theoretical job in the national economy for a theoretical job seeker with the limitations of the person applying for disability. My lawyer had explained this before the hearing and said not to get upset or defensive when he or she listed the jobs. “They always find jobs,” he told me. It’s the lawyer’s job to cross examine the VE and challenge the idea that I could do any of the jobs with my limitations.

My mother was with us, waiting outside. She was going to testify if the judge allowed it – not all do. So when the judge started to call on the VE, my lawyer said that she was there and could offer testimony regarding the nature and severity of my condition and the limitations I face. The judge looked back and said “I don’t think that will be necessary.” My heart sank. He continued… “I believe I’ve heard all I need to hear. We’ll just get the VE on the record and then rule in favor.” The world just stopped. Much like I had asked it to a million times. But this time I hadn’t asked. The judge just made it so with three words.

“Rule in favor.”

I kept hearing it. He began questioning the VE. He threw out the set of limitations that I have and asked if there were any jobs for a hypothetical job seeker with such conditions on the light exertion level (social security splits jobs up into exertion levels.) There were none, she told him.

“Rule in favor”

It kept playing in my mind. He removed some of the limitations. There were still none. This went on for a couple of minutes until he finally asked if there was any job at any level that the hypothetical candidate could do. “No, your honor. None.” I knew in my head that those words solidified what the judge had already concluded.

“Rule in favor.”

I had won. But what on earth was going on? I was shocked. That made sense. I was happy. That made sense. I was all kinds of things that made sense. But I was sad, or upset, or….something I couldn’t quite put my finger on that I knew didn’t feel good. And then it hit me. I had just sat in a room answering questions and listening to my lawyer prove beyond a shadow of a doubt that there is not a job anywhere at any level that I can do. It’s funny how living with something, and fighting to get others to recognize it is so completely different from having someone else say it or prove it.

The only analogy I could come up with was this…if you talk badly about someone in your family it’s not a big deal. You love them; you’ll get to each other every now and then. But if someone OUTSIDE of your family says anything bad about that person – WOAH! Step back – now THAT is not cool. Even if all they do is repeat what you have said, it sounds so different when they say it. Feels different when they say it. It’s WORSE when they say it. Well it felt really different to hear that VE and that judge say that I am, in fact, disabled. That I cannot work.

It took me a few days to get things clear in my own head and in my heart. I was happy. And grateful. And the initial sting wore off. I focused on the fact that it won’t always be like this and that now, finally, at least I will be somewhat able to support myself. It’s kind of strange, to be honest. Strange to get up every day and not be waging this war. I’ve been fighting for disability for so long that it still feels a bit like I’m not doing something really important every day.

There is still a lot to figure out. The final decision hasn’t been put on the record. They haven’t sent me the paperwork with my award amount and all the details. It will be a while until my benefits begin. But the judge was very clear. And my lawyer said that the VE not finding ANY jobs – that doesn’t happen. I still have to sort through my decisions about health insurance and what I’ll need on top of medicaid. But the fight is over. And I won.

I put off applying for SSDI for a long time because I refused to believe what was proven in court two weeks ago. I thought it meant I was weak. I thought it meant I had given up. I wanted to believe it was not true. But you can’t hide from the truth. At least not forever, and certainly not without consequence. I hid for a long time. And it cost me all of my money, many nights and even weeks in hospitals, and nearly my life. And it cost my family an enormous amount too. But this decision marks the start of a new reality for me and a new truth. I don’t yet know what it looks like or what it will feel like, but I am, above all things, grateful.

This has not been an easy road, or a comfortable victory. But it is a victory. One that I pray each of you plodding along in the same heavy shoes has the strength to keep moving toward, one step at a time. There are many road blocks and the system is designed to make you give up. But don’t. Keep going. Keep fighting. It is a long road. A hard road. And you are fighting for something you wish with all your heart you did not need. But you do. I do. And though it is somewhat bitter – there is still sweet victory at the end of this journey! So here’s to strength and perseverance, and to someday not needing that for which we have all fought so hard!

Recovering Plan-a-holic

I grew up a planner. I planned everything. Always. I had back up plans. I had backup plans for my backup plans. I did this from the time I was a little kid until I was an adult…sitting amidst the ruins of years worth of failed plans. Then I realized, life simply can’t be planned…at least not in any long-term fashion. (SHOCKER – I know! – well at least now you can’t say I never taught you anything!) One more important matter – it never pays to get attached to our plans.

There is a wonderful Chinese proverb that states that “To enjoy the life we deserve, we must first let go of the one we planned.” I used to read that saying every week while sitting in the waiting room of my therapist’s office. I would recite it over and over until I felt like I could MAYBE start doing it rather than just reading it. That went a little something like this…

“Ok, so I’m not married to my college sweetheart. And we don’t have a cute house in a great neighborhood. Our home isn’t filled with two kids (Jacob and Kiley) and our two dogs – Nala (our German Shepherd) and Tucker (our Golden) – in           addition to Piper and Chloe, of course. Instead, I’m 34, never married, not dating anyone, no kids and no dogs. And never owned a home. Drifting between the homes of friends and family while still waging a war against my own body and fighting desperately for social security disability.”

Eh – no problem – that other life, the one I had planned in absurd detail – it probably wouldn’t have been so great anyway. Ok – so it’s still hard sometimes not to at least wonder about that life. But here’s what’s more important, and more exciting. This life – the actual day-to-day real one that I never planned and often don’t know if I can handle – this one is full of undiscovered potential. Yes, that’s right I said POTENTIAL. And if you think it’s tough to imagine loads of potential while huddled in a painful ball in a dark, silent room…you’re sometimes right. But practice really does make perfect. And I’m getting there. I might not have all the things I imagined I would at this stage of my life. But I have a great deal more strength and resilience and faith than I ever would have if things had just gone according to plan. So I am hopeful and optimistic, and yes, even grateful. Not for losing the man I loved, but for the ways this life has tested me and fortified me. And for all the possibilities that remain.

Speaking of possibilities – this week has brought a firestorm of opportunity (and challenge). I learned that our request for an expedited Social Security Disability Hearing had been approved and that it will take place tomorrow at 2 pm. From the time I learned this until…well, earlier tonight, I have prepared and planned and stressed and planned some more. I have been frustrated with my attorney who, in my estimation has not done nearly enough of any of those things. But I sit here now and I realize – I can’t plan or stress tomorrow into being successful. Yes, preparation is needed. But I went far beyond preparation. I was looking for something that does not exist. I wanted a guarantee. And my hearing tomorrow, as with all things in life – comes with no guarantee. So I will go in as prepared as I can. I will let go of all the planning and the resentment toward my attorney. I must simply accept that he knows how to do his job better than I do.

I will either win the appeal or not. But it will all happen one step at a time. I’ll finish this post. I’ll relax and spend time with my mom and step-dad and cuddle with my cats. I’ll (hopefully) get a good night’s rest. I’ll get up and take tomorrow, similarly, one step at a time. Then, after putting one foot in front of the other through this incredibly important day, my hearing will be over. And both my lawyer and I will have done all we can do until the judge renders a decision. And I am (almost alarmingly so) at peace with that.

I spoke with a friend earlier tonight. He questioned me about what I will do if the judge rules against me. Fighting everything in me that yearns to plan for every contingency….I simply said, “I don’t know. I will cross that bridge when..IF…I come to it.” I smiled, pleased with myself. I must be doing something right. I’ve apparently learned a lesson somewhere along the way. And in this particular moment, it appears that my energy could be put to far better use than planning that which cannot be planned! If you don’t believe me…just as Chloe…

International cat sign for “GET OFF THE COMPUTER AND PAY ATTENTION TO ME!”

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