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! 

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.

There 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. 

Sorry Honey, but I might be sick forever.

Someone asked me recently, “how do you manage to keep any sense of hope after so many years of living with this kind of pain and so many failed treatments?” I just stared back for a moment, then responded, “what choice to I have but to keep hoping?” Then I realized, that was not it. I do have a choice. And there have been times when I have lost hope, like so many others. But ultimately, it’s not about the fact that I HAVE to have hope; it’s that I have succeeded in keeping it all this time. For some people hope comes in the form of religious faith; for others an unyielding belief in science and medicine. For me, it comes in the form of accepting what is, and might or might not ever be.

Years ago my fiance said “Some day you won’t have this damn headache; you have to believe that.” Much to his dismay, I told him that actually, it was quite possible that I might always have this headache, and that it was far more important that I accept that, and that I was sure it would help him if he could accept that too. He looked at me bewildered, and then with anger. He was frustrated. To him it felt like I was giving up. But it wasn’t about giving up. I simply had to approach my future in a realistic way and make the best decisions I could with the information I had at that time (two years had gone by since the onset of this migraine…I figured it was time to get real right?). And as true as it was then, nearly a decade ago, it is true today…there is no evidence to suggest that I will ever be headache-free. I know, that thought is just oozing hopeful all over the place! But here’s what it does… it allow me the space I need to operate free from the pain and anxiety of WAITING. I don’t spend my days waiting for the pain to stop or for whatever new treatment I’m on to start working.

What my fiance mistakenly took as me giving up and throwing in the towel was really the beginning of me fighting back with a healthy frame of mind rather than driving myself mad with anxiety over “when will this all end????” Psychology plays no small role in all this. In order of appearance it’s pretty much second in the credits. Once I accepted that I might actually never have another second without a headache, I was able to begin approaching treatments with a more reasonable frame of mind. (Yes, I read that and yes I realize how crazy it sounds, but just go with it for now…) Having a healthy, optimistic outlook when you start something new is great – necessary, in fact. But throwing all your eggs in each new basket and assuming each new treatment is going to be “the one”…not so much. That’s a one-way ticket to kill me-ville paved with the names of every treatment that failed. It’s just another way to let the pain win. Neuroscience, psychology, biology, and the many other factors that go into creating the horrible pain we deal with are unimaginably complex and ever-changing. Each person’s own brain chemistry alone is constantly changing. To find the right combination of treatments for an individual is a Herculean undertaking. So while we might be frustrated with our doctors, imagine the frustration they must also feel.

I won’t ever stop trying new things to deal with my migraines and lessen the pain that I live with. I’d have to be crazy to stop trying. I certainly can’t do nothing. And for those who need more as far as a reason to hope, I suppose I would say this…I am better today than I used to be. So that is reason enough for me to believe that in the future I will be better than I am today. The irony…accepting that this might be a lifelong condition was the single most important thing that allowed me the freedom to hope that it might not be.

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