Life is unpredictable; We all know that to be true, but we still expect our lives to fall in an order in which we approve. It’s a trap that constantly sets us up for disappointment and frustration. Certain things aren’t supposed to happen. We aren’t supposed to lose family and friends before “their time”. We aren’t supposed to be alone, or with the wrong person. We aren’t supposed to get sick. We aren’t supposed to be in pain. But life doesn’t care what we wish it was like, or even what we’re planning on it being. Many us go through periods of time in which we feel like it’s all falling apart, everything we’ve thought our lives would be. Sometimes that panic lasts for a couple hours or days, we’re able to get ourselves centered quickly and get back on track. Other times things actually do fall apart and it takes months, years, or decades for the downslide to end. Recently, I’ve come out of a four-year downslide that was full of physical and emotional pain, and I can say with great confidence, it wasn’t part of the plan I had for myself.
In my teens and early 20’s, I was known as a work-horse. Any job that needed to be done, I would give it a try. I have had more jobs in my life that almost anyone I’ve ever meet, and I valued that aspect of my life dearly because it meant I would try anything and wouldn’t settle until I found myself doing what I loved. I thought of myself as a hard-worker, someone who was always ready to take on the next challenge and work my way up the ladder. I felt I was making all the right moves to set myself up for the organizational psychologist gig I always dreamed of. And then life shook things up like a snow globe and all my plans were stopped dead in their tracks. I was familiar with this experience as it had happened to me for a brief time when I was 20, resulting in my first back surgery, and at the time knocked me off the path I was on for approximately 9 months. Pain will do that to you, stop you right where you are and demand all of your attention.
This time however, I still wasn’t prepared for the pain I would come to be in and the resulting fall out. I don’t think you can ever prepare for severe chronic pain, it’s like an explosion going off in your life, continually destroying everything you thought you valued; Your relationships, career goals, self-esteem, the ability to care for yourself…everything becomes hard and mutates into something toxic that you eventually find yourself unable to recognize. Severe chronic pain steals the life you thought you had away from you and replaces it with one you wouldn’t wish on your worst enemy. Whereas, once I had many friends, a great career, great relationships with my husband and family, hobbies, travel plans, etc; For four years, I had very little interaction with others, was forced to go on disability, had extremely strained personal relationships, found myself with zero interests, was miserable to be around, and was consumed by doctor’s appointments, procedures, surgeries, and daily fights with insurance and pharmacies to get the medication I needed. I hated myself. I hated my life. I hated causing others around me pain.
I tried everything to get back to my regular self. By the end of the four years, I had completely forgotten who that person even was that I was trying to get back to. Occasionally, I would run into someone whom I didn’t see frequently and I could tell they still saw me as my old self; it would make me sad, to be honest, because I believed I would never find my way back. I once heard Deepak Chopra say, “That which is of the nature of arising, is also of the nature of subsiding.” I would tell myself that for as bad as things got, there would be an equal and opposite reaction, and then I would hope what I was telling myself was true.
Now, I don’t pretend to understand how life works, but a few months ago everything turned on its head. A routine doctor’s appointment with my pain management specialist in which I would usually be drug tested (always a moral boost), and given scripts for my usual medicines, stopped being routine when I vocalized one of my symptoms more clearly than usual. I had always explained my pain as burning and was diagnosed with peripheral neuropathy (along with a bunch of other things) for years, but my pain had gotten to the point where my entire body felt like it was on fire if I did anything requiring effort. I couldn’t cook dinner, take a shower, go for a walk, without feeling like my back, neck, legs, arms, everything, was on fire from the inside out. For some reason that day, vocalizing my pain in such a way, lead my doctor to try a different medicine. Instead of more pain meds, and more muscle relaxers, she prescribed an extended release & high dose type of nerve medicine. Nerve medicine I’d already tried, previously in a different form (short acting & lower dose).
Within a week or two, I knew something big was happening. My pain was decreasing at a significant rate as we increased the dosage of the nerve medication. Where I once couldn’t hold a conversation, or perform a task without being consumed by the fact I was in pain, I was suddenly contemplating how to go about getting a part time job and hanging out with friends & actually enjoying it for the first time in years. I decided to stop taking my pain medicine about a month into taking the nerve medicine and I haven’t looked back. I was on an INSANELY high dose of opioids for YEARS, and I was able to quit cold turkey just like that. I can’t tell you how much that alone made me feel better physically and emotionally. For years, my family and friends have known I was on high doses of painkillers and would act as if I was either abusing them or was super dependent on them. I could feel the judgement oozing from their pores when I would see them. I knew in my heart that I didn’t ever crave these medicines, I knew I didn’t take more than was directed, and I knew I didn’t want to be on them but it was the only resource I had. The second I was in less pain and therefore able to go off them, I felt incredibly validated. I wanted to scream from my roof, “I TOLD YOU I DIDN’T NEED THIS MEDICATION. I TOLD YOU I HAD NO CONTROL OVER THIS PAIN.”
I had so much anger about my pain when I was in it. I wasn’t just angry I was in pain; I was angry that people I knew would never understand what that meant. In hindsight, I was exhausted. All of my energy went into the pain, when I was consciously thinking about it, and even when I wasn’t. It was as if every bad day, every negative interaction, every fight with a doctor or insurance company, every surgery, every side-effect, took water out of my figurative bucket. I had nothing in my bucket, nothing to give anyone else, nothing to draw from, bone dry. When I started feeling better that bucket filled back up, finally I had patience, finally I was motivated, finally I had energy. It was a complete miracle.
I don’t understand why my life took such a sharp, unexpected turn. I don’t understand why I had to be pushed to such extreme physical, emotional, mental limits. I do know it’s made me have even more compassion for people, I’m hoping that gift will help me in the future. It’s also made me more grateful for the time I spend in decreased pain. I know I’ll likely never be pain free, and that’s ok. Spending so much time in 7, 8, 9 out of 10 pain has lead me to feel that a 2 or 3 is not a bad place to live. I’m finally able to start working again (not in my career field quite yet, but I’ll get there), I go to dinner and have drinks with my friends, my husband and I spend legitimate quality time together, my relationship with my family is better, I’ve been able to travel a little bit and expect to start doing more soon…I care about life again.
To go from caring, to not caring, to caring again, I empathize with others who are still stuck in the “not caring” stage. If I can say one thing to the person who is going through their struggle right now, it would be, “don’t give up”. Don’t stop trying to find answers, don’t resign yourself to thinking “this is just how things are now”, don’t lose faith in yourself. Someone will come into your life, something will happen. Remember, if it’s gotten this bad, it has no where to go but up, and it will. I just don’t know when. I wish I could cast some kind of spell and have people in pain & suffering break through to the other side, but I can’t. All I know is that if I had given up, I wouldn’t be on the other side of this. If I had stopped trying to find answers, if I had listened to all the negativity…I’m actually afraid for the shape I would be in. So please, I know my story is just one person’s account of what worked for them, but I was once in a lonely, desperate, terrible place, and I still would be if I hadn’t kept pushing for answers and solutions. Keep pushing, friends!
Sending positive vibes!
*Side Note: Originally written 4/2/17