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

Archive for the ‘Life Lessons’ Category

This is Winning.

Back in 2012 one of my best friends and I decided that 2013 was going to be our year. The previous few had pretty much sucked. Not that there weren’t good times or things to be thankful for, but we’d both been through a lot and we were really looking forward to a fabulous 2013. You know what they say about the best laid plans… Needless to say, 2013 didn’t turn out to be THE year. For either of us. Personally, I dealt with 4 surgeries, a failed business, a failed suicide attempt and a very tumultuous relationship. I wasn’t sorry to see it go. 2014, unfortunately, didn’t prove to be a whole lot better. Well – there was no suicide attempt so I guess that’s a pretty marked improvement lol.

Looking back over the last several years – I realize that I haven’t really had a life of my own. I really haven’t had much of a life. I have so much to be grateful for – my amazing family and friends and their seemingly endless support and encouragement. But it’s time for a change. Time to really start living.

uhaulI sit here, the night before New Year’s Eve 2014, and I AM READY. I’m ready for a lot of changes. I leave tomorrow to move 3000 miles from the comfort and support of my family back to Sacramento, back to an amazing group of friends whom I have missed SO much in the 11 years since I left CA. I have plans. Big plans. Maybe not in the same way that healthy people have big plans, but plenty for me. That’s the thing though, isn’t it? It’s not about how our lives measure up to others. It’s not about how much money we make (if any) compared to anyone else; it’s not about how nice our home is or what kinds of vacations we take or our job status – if any. It’s about setting goals for ourselves. Things we can actually achieve – or have a shot at. Even if it’s a long one. It’s about challenging ourselves. Some people are determined to get that big promotion this year. And that’s great. I am determined to find SOMETHING that I can do part time. And that’s enough for me. In fact, no, it’s not just enough – it’s HUGE. If I could go back to work in any capacity at any level – it would do more for my state of mind, my quality of life and my health and happiness than someone else’s huge promotion. It seems like a small thing to most – but to me it would mean a world of difference.

I have lots of goals like that. No need to bore you with them all here. The point is that January 1 isn’t just a time for resolutions you have little to no intention of keeping. It’s about reflecting on where you’ve been, how your life is going and what YOU can do to improve it. And to hell with the comparisons to everyone else. So get out there – set your goals – and go after them with all you’ve got. I might not have control over my migraines, but I have control over more than I have allowed myself to believe in a very long time. And this year I intend to take back the reins of my life. One way or another – this year will be a better year.

Happy New Year everyone!

Here’s to new beginnings, new goals and new-found strength!

Migraines, Meds and Making Connections

Migraine Support Group cover photo - courtesy of the U.S. Pain Foundation

Migraine Support Group cover photo – courtesy of the U.S. Pain Foundation

I recently joined a Facebook support group for migraine sufferers. It has been an experience that leaves me with such a variety of emotions. Sadness. Empathy. Frustration. Compassion. Fury. Hope. I read the posts and it is as though I am reading something that younger versions of me might have said. Versions of me in the early stages, with ill-equipped doctors doling out terrible advice and the wrong meds. Giving up on me. Over and over. Versions of me that wondered if anyone else on the planet could possibly be experiencing what I was going through. Non-stop pain. Pain that was crippling. Pain that made me wish I was dead, or at least unconscious until someone invented a cure. Isolation. Judgement. No one could SEE my migraine so many people dismissed it, underestimated it, assumed I was faking or being dramatic. Loss of wages for when I couldn’t get to or stay at work. Loss of income when I was repeatedly let go for absenteeism. Accusation of being a drug-seeker when I wound up in the emergency room. The inability of so many ER staff to distinguish between seeking drugs, and seeking comfort, progress, a few moments, at least, with less pain. Versions of me that could sense when yet another doctor was about to give up on me or simply say that my only option was pain management with narcotics. Versions of me ready to just give up all together.

More than 14 years of living with this condition has left me wiser, more cautious, patient, more discriminating about who I allow on my treatment team, and eager to get the word out that if you are dealing with migraines, or any other chronic condition – know this – YOU ARE NOT ALONE. The first time I actually believed that was when I was being treated in-patient at the Michigan Headpain and Neurological Institute. A team of doctors from various disciplines led by Dr. Joel Saper, world-renowned for his work in migraine treatment, fully dedicated to 22 patients. We did 3-day trials of intense IV protocols. Some helped. Some hurt. Some did nothing…or so it seemed. Some people had miraculous success. Others, like me, waited for weeks with no apparent improvement. We went to classes on the physiology of pain, stress reduction, coping mechanisms, art therapy, yoga. We saw psychologists. But out of all of that, one of the most amazing and life-altering parts of this entire process was the 21 other people who actually got what I was going through. REALLY got it. Not “I can only imagine” got it or “I went through something similar” got it, they actually, really, absolutely got it. That was as powerful as the medicine. It was miraculous. Life-altering. Those relationships are still some of the most important in my life.

Dr. Joel Saper, photo courtesy of MHNI

Dr. Joel Saper, photo courtesy of MHNI

My time at MHNI was also my first experience with a real headache clinic. The results were profound. If you combined all of the improvement from the previous 5 1/2 years, ridiculous number of medications and treatments and countless doctors, it was only a fraction of the relief I got from the protocol the MHNI doctors found for me.

So why am I still a chronic migraine sufferer? Pretty common question. The thing about migraine and all of the other headache disorders is that you are dealing with the most complex thing on the planet – the human brain. Brain chemistry changes CONSTANTLY. So to think that finding something that works for the moment is the same as finding a cure is just naive. What works now will hopefully work for a while. But it is unlikely that it will work indefinitely. For me, it was about two years before the efficacy of my drug protocol started to nose-dive. But when it did, it didn’t take long. It was excruciating. Both physically and emotionally. I just knew that I couldn’t go back to that level of pain every day again. And certainly not with the hours I was working. I was right. Something had to give. I was battling my HMO to allow me to go back to MHNI even though they were out of network while still trying to keep things going at home and at work. NOT sustainable. I started missing work. A lot of work. In fact, I used up all of my FMLA days. I had to take each day I missed without pay. FINALLY I got the go-ahead to go back to MHNI. I went on short-term disability, figured I’d be there for 3-4 weeks and would need another 3-4 to recover before coming back.

If only it were that simple. My second month as a patient at MHNI didn’t yield the incredible results the first one had. In fact, I was not better at all. Short-term turned to long-term disability. My financial situation deteriorated. My emotional state plummeted. I became essentially non-functional. If I got from my bed to the couch downstairs it was a big accomplishment. This went on for a couple of years. I became suicidal. I was treated at a trauma treatment center for three weeks. My emotional state improved while my physical state continued to deteriorate.

Then I moved. There were many factors that brought me from northern Virginia to central Florida, but the biggest thing (healthwise) that I got out of it was a new doctor who profoundly changed my outlook, my options, and delivered (to an extent) on promises of relief. I’ve been with him now for about two years. I’ve had several surgeries. I am better. I am not cured. I am not pain-free. But I am better. And more than that – I have hope. I often get the most amazed response to that statement. After more than 14 years of chronic pain, how can I actually be hopeful? Well here’s the thing…I had a surgery that did not exist when my condition began. And it has helped me. Not in the ways or to the extent that I was led to believe, but it did help. So why would I not assume that this incredibly complex science being explored by some of the most brilliant minds in the world would not continue to advance? It will. And I will continue to reap the benefits of that progress.

So to all of you out there at whatever stage of chronic migraine or cluster headache or whatever other disorder – hold on. Keep going. Find a good specialist and keep your expectations in check. Progress is possible and there is reason for hope. And for all of you out there who are “old hats” at this chronic pain thing – reach out. There are people who need you. None of us is alone. There are others – many others, who are going through the exact same thing as you. We deal with the same challenges, the same questions, the same stigma, the same need to not be alone in this battle.

So here’s to better science, less pain and many new connections!

 

 

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.

support

 

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

 

 

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