Don’t Give Up; Never Give Up!

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

Time For Positive News

It’s about damn time for a positive post…Am I right? My positivity shouldn’t be confused with a content-ness of all things in my life, but that’s not a prerequisite to taking time to reflect on good stuff going on. After having a bad weekend pain and fatigue-wise, I had a good day. It was filled with a few trips to the pharmacy and multiple doctor visits, BUT, that has allowed me to reflect on my progress. It’s easy to lose sight of progress when other things in life remain strained, but I know things will continue to get better as my health does. In the last two months, I’m down 75% in my pain medicine intake. Holy. Shit. Right? I never would have thought it was possible. However, I made the decision to start going down and once that decision was made, things started to align.

At first I went down 50% and it was hard, some days harder than others. Some days I needed the full amount, but slowly I adjusted. I hit a plateau at 50% and it was going on an extended-release nerve medication that got me to where I am today, which is 75% less! My goal is to be completely pain med free, but I will listen to my body and if I need it, I need it. Whatever it takes to be the most fully functioning version of myself, I will do it, and being on so much pain medicine wasn’t working for me anymore. Even on my highest dose I was still in significant daily pain. Slowly, negative side effects have decreased significantly and I feel okay (most of the time). I’m not recommending anyone do what I did because I’m in no way qualified to give advice like that. I’m just sharing my feelings of accomplishment at goal setting.

Two Disclaimers….

*Disclaimer 1: By “pain meds” I mean opioid based medicine, not general pain management meds.

*Disclaimer 2: I’m still in pain, it has not gone away, however my ability to do routine tasks like cook a small meal, vacuum the house, grocery shop (not all in the same day), have increased. The “my body feels like it is on fire” expression has rarely been coming out of my mouth lately and I used to say it all the time. My neck always still hurts, as does my back and left leg, but I can function, and that’s saying a lot. I’m not spending all my time in bed anymore. I’m thinking about my future again, and for a couple years now that has been stunted. I 100% feel it has to do with the nerve medication; It has somehow made things calm down and be more tolerable. I say “disclaimer” because I think people who have chronic pain/illness are afraid to say they are feeing better due to the assumption people will think they’re cured, or can now handle what they once did (and some people might think that). Honestly, I don’t know if I’ll ever be able to handle what I once could, but I’m on a better track than I’ve been in years, and that’s encouraging. It’s been a long, complicated, multi-medication, multi-non-pharmaceutical therapies attempt, so I’m trying to savor whatever is happening, while praying it’s not temporary.

Sending positive vibes,

Cultivating Peace in Times of Despair

When I began to write this I was crying…I was crying out of frustration, which has been a more frequent activity the last three/four years than any other time-period in my life, stemming of course from significant decreases in overall health. Over the last few years I’ve cried due to mourning my old self while simultaneously resisting who I ultimately became; My biggest fear was always that I would become a full-time patient and damn if it didn’t become a reality. I’ve cried over being mistreated by doctors, nurses, secretaries, pharmacists, pharmacy aid’s, radiology technicians, hospital administrators, insurance companies & Social Security, Medicare, and prescription benefits employees. I’ve cried over both personal and medical debt collectors harassing me while trying to squeeze blood from a stone. I’ve cried over the effects my condition(s) & the numerous negative side-effects which have impacted my personal life, my professional life, social plans, my family and my friends. But today I cry about people not doing their jobs; People who don’t follow through on the things they said they would and people who give incorrect information to my detriment without regard. This week has been full of such people and I’m finally breaking down over it. I have found that no one is accountable to me as a chronic pain patient (yet, I remain accountable to others) and it makes me feel so insignificant. 

I’m crying over the lack of control I have over my entire situation and how my medication, my money, my debt, my health choices, are always in someone else hands. I can empathize with people who steal because they have no way of getting out of the situation they’re in without it. I can empathize with people who buy drugs illegally because they have no other way of getting them. I can empathize with people who scream & swear at customer service representatives who tell them there’s nothing they can do. I don’t endorse any of those actions, and granted some are more severe than others, but I what I’m trying to say is that I can emotionally understand these choices because I can relate to feeling desperate. It’s a desperate feeling when you are on a medication you can’t come off without extremely negative consequences and someone tells you it will either cost you $1K or you’ll have to go without. It’s a desperate feeling when a company takes money out of your bank account via an irreversible mistake after you’ve planned how every dollar will be spent and the mistake causes you to not be able to buy groceries. It’s a desperate feeling when you are overwhelmed with medical debt but find you’re not qualified for financial aid because an employee waited too long to process your request and a critical deadline was missed. It’s a desperate feeling when you miss important plans/appointments you committed to because you can’t even get out of bed due to pain or fatigue (or both). It’s a desperate feeling to have to give up work you find deeply rewarding because you can no longer perform the simplest of tasks. It’s a desperate feeling to feel controlled by a person, a company, or the government.

There’s a lot of despair that goes into chronic pain/illness and there’s a reason depression & pain frequently go hand in hand. I believe it’s possible to manage depression and still be in pain. In fact, it’s something I do every day; It’s just that some days it’s harder to manage than others. Today is one of those “harder” days. However, it’s important for me to note that I realize although I’m having a hard week, I will get through it. I’ll wipe my tears away, put on some music or do some yoga (whatever I find comforting) and I’ll put this week behind me. What other choice do I have? I could stay in a place of despair, but that doesn’t serve anyone. To be clear, I believe it’s perfectly ok to recognize the cause of my suffering and emotional pain. It is staying in the suffering that causes long-term damage. Sometimes it’s not a choice for people, to stay in the suffering or to get out of it. Sometimes it takes medication and doctors and significant cognitive behavioral therapy. That is not the case for me right now and I think it’s important for me to make that distinction, so please take my words with a grain of salt. I don’t believe all depression can be fixed with music or yoga, but for me, those are usually good places to start when trying to climb out of the figurative hole I’ve gotten into. Talking or writing about what’s wrong also helps; Writing this right now is helping me gain some perspective on my situation which makes me feel less depressed already.

I think the issue we face as individuals with chronic pain/illness is that we’re already hammered everyday by our conditions. We’re hammered with facing substantial difficulties for weeks at a time, often months or years; That takes quite a toll on us. It is easier to deal with a bad week than it is to deal with consecutive bad years. Complications become exhausting on a level almost impossible to understand unless you’ve been through it firsthand. Consistently losing battles makes the fighting even more taxing and that’s why it’s so important not to stay stuck in the suffering for longer than necessary. I’ve found that finding ways to provide myself a break emotionally, so that it isn’t just one bad thing after another, is important for my overall health and mental sanity. So tonight, I will take care of myself. I will practice some yoga, perhaps take a bath, and listen to some music. The battles will be waiting for me when I’m ready to return to them, but for now, some peace is needed and I’ve learned over time how to create that for myself.  

Wishing you peace when you need it most.

Sending positive vibes,

Signoff

Third Time’s A Charm

It has been 14 months since I last posted on my website and Instagram. In that time, I have often felt the urge to start again, but I suppose I would remember why I stopped and get stuck in the cycle all over again. Why did I stop? When I lost my cousin Tim (which I went into detail about back in September 2015) everything felt like it changed. My anxiety increased, my health decreased, my belief in myself disappeared. It wasn’t until facing recent anxiety challenges that I realized I shouldn’t have abandoned such a healthy outlet. My goal is and has always been to help others who experience pain and chronic illness like I do. I have realized I am unable to do that if I’m not taking care of myself. Sometimes, I feel unable to do so, overcome with pain, anxiety, & depression. It has taken me a while to realize, that’s when I need to be most kind to myself and put wellness at the top of my priority list. The last 14 months have had small peaks and big valleys and it’s only recently, after putting my health first (I’ll talk about that more in future posts), that I’ve started to feel consistently better. The point of all of this is, I don’t think I’m the only one to fall apart in hard times; This is the third time I’ve started over with this blog, my podcast, and my social media presence. Pain increasing as the body is stressed emotionally, physically, & spiritually happens to us all. Anxiety manifesting itself in a way in which I shut down and feel incapable of doing anything because I’m buried by “what’s wrong” is not a singular experience. However, since pain and chronic illness is an isolating experience, I feel it’s common to think, I’m going through this alone. I’m back to say that I’ve realized I don’t need to have chronic pain figured out completely before being able to help others. Providing that help and being supported by the chronic illness community has been a benefit I can’t even explain, so it’s only to my detriment to have gone radio silent. Mastering my health is something that is going to take my lifetime and I don’t want that lifetime passing by without sharing what I do know with other people. So, future posts to come about “what I do know”, and it won’t be another 14 months, I promise.

 

Sending positive vibes,

Signoff

My Cousin: Tim Hackett

Tim’s official obituary was beautiful written.  Writing them has to be so hard because how do you explain who a person was…a lifetime of “the best of times, and the worst of times” into a few short paragraphs? It’s pretty much an impossible task. I’ll give Facebook credit here today for giving me an opportunity to elaborate a little on Tim’s obit, and expanding on the side of him I knew the best, the role he played in my life, as my younger cousin.

Growing up I remember it being, “the four of us”. That meant my sister Jaimie, Tim, my cousin Michael and I. Jaimie & Tim are 5 months apart, Michael and I are a year and a day apart, between us, youngest to oldest, there’s a 24 month difference. We made a good team. Ninja Turtles, The Land Before Time, Rugrats, Doug, PowerRangers, etc…they gave us a lot to work with. Jaimie and I didn’t go to New Milford Camp’s, we went to Sherman one’s so that we could be with Michael and Tim. I’ve always felt like half a Shermanite because of them, especially when we got into high school & they came to New Milford…(Pat his brother also gave me a little cred there too). Jaimie and I went to so many of Michael & Tim’s little league hockey games that I hated at the time because it .was. so. cold!! But, I love every minute looking back on it now.

Our little sleepovers at Tim’s with the four of us were epic. Aunt Cathy would tell us the most amazing stories you’ll ever hear in your life. A particularly awesome one was about how she thought Tim was going to be born a girl named Meredith and everyday she’d talk to her belly and say “hiiiii Meredith” He’d hate every minute of it. He’d hate/probably love the laugh people get from telling the story now. Aunt Cathy made every sleep over the best experience. She made “special water” where she knocked on all the kitchen cabinets and pretended that it added magic to it…she made everything fun and silly. Even the other day she was telling “Timothy” about all the sandcastles we used to build at Millstone to Susan and Adrianna, giving them something to strive for I guess. It brought a huge smile to his face. I miss those sandcastle years…

I’ve watched Tim be the sibling I wish I could be. He got along with all 4 of his siblings so well, they all had unique relationships that only they know and will forever cherish. With Sara, he was her world, and she was his. The first thing Jaimie said to me after she found out Tim had passed was that Sara was waiting to hold his hand, and I believe her, knowing they’re back together is what is getting me through this. His relationship with Susan was so beautiful, of course she started out as the younger sister, but as of late, she has gotten so mature, she was basically the one telling him how to bag groceries properly and cook things better. Susan is so amazing; I think she helped heal Tim’s heart in ways that we’ll never know.
Tim has looked up to Pat, like all the younger cousins have…since forever. He’s always been cooler than us, more tech savvy than us, had more money than us, and had this “parents just don’t understand attitude” that separated him from the straighter-laced kids. Some ideas form when you’re a little kid, get stuck it’s hard to shake them, those are ones I have a hard time shaking about Pat. Tim looked up to him as probably THE funniest person in the world, and he’s up there, but so is Tim. Everyone had to get closer when Sara passed, and I know one person whose relationship probably went from kid sibling to adult sibling, was his and Erin’s. Erin and Tim were best friends. They had their own language, similar to Pete and Kyle, in that whenever I look over or hear what they’re talking about, I have no clue because it’s in a whole different language altogether. Erin looked out & I know helped provide guidance for Tim. Her daughter Adrianna was more like a sister, less like a niece to him. He had so much love in his heart for his siblings, and them for him. And that’s probably what I’ll remember the most.

Tim was everywhere. He was at every. single. family. event (since he was probably born)…and in an Irish family that’s hard to do. He never missed an event because he didn’t feel like going, or had something better to do; family was number one to Tim, I realize now how much of a sign of respect that was.

Tim was a man of few words, but, holy shit did he make those words count. I can’t think of a single thing that he said that doesn’t instantly make me laugh out loud. His brother is exactly the same way in that regard. How two brothers are so naturally under-the-radar funny, I have no idea. Tim would say the weirdest shit just to get a laugh out of a group, or he’d say a perfectly timed comment because the whole time everyone else was talking he just be waiting…and waiting…for the right moment. And then, boom, he’d nail it.

We had the best conversations about geeky stuff we loved like TV & Movies, specifically comedy. Last Superbowl, it must have been afterward, or during halftime, when everyone was downstairs, him and I sat on the couch away from the noise and talked about SNL’s upcoming 40th anniversary special the following week and we geeeeeeked out, we talked about almost everything comedy possible. It was awesome, and I’ll never forget it.

Obviously I don’t think anyone in my family will ever let Chris forget the time he basically threw Tim across the room in 2010 (such an exaggeration, I’m kidding). After making family bratwurst, (and the ENTIRE family was sitting in the Filippi’s living room) Chris kinda chest-bumped Tim in celebration of the Olympic women’s curling…WOMEN’S CURLING!…(who cares?) and not ready for it at all, Tim flew into a giant picture on Aunt Carol’s wall. The thing swung wide to the right, wide to the left, wide to the right again and then crashed to the ground. I think all the air was sucked out of the room in shock, and then everyone laughed harder than they have in their entire lives (except probably Aunt Carol & Cathy). I remember Mike Ness saying after the laughter stopped, “Did that really just happen?” and I was thinking the exact same thing. How was that moment, caused by such an accidental troublemaker (my step-dad) and such an under-cover wallflower (Tim) witnessed by the majority of our family. It didn’t get better than that. I know it pissed off some people, broke some things and not everyone found it as hilarious as I do, but it still lives as the funniest thing I’ve ever seen in my life.

Finally, Tim was the catcher on the H&H Softball Team, our grandfather’s old team, that’s been around for 40 years. Tim’s dad, Tom is one of the four original members, our pitcher. I know my grandfather would be extremely proud that Tim would have played for so many years (10, I think?) on this team #16. A number of members of the team are multi-generational, and that’s a special thing. We take it seriously, even if it is beer league softball. A lot has happened over the course of 40 years, (almost) five years ago we lost another teammate, Ryan Tlasky (20) whom we’ll never forget. We’re a family, we see each other through terrible times, lots of beers & laughs and the occasional win. It was one of Tim’s favorite thing’s in the world, along with watching the NYYankees & Minnesota Vikings with his family ( The Ness Family of course included in that statement).

Things will never be the same without you Tim. I know you didn’t know how much you meant to me because I didn’t tell you enough…I wish I did. I believe you and Sara are free from pain now, I hope you feel my love, I hope you feel our love tomorrow, and the rest we’ll be sending forever #HackettStrong

 

Sending, but also asking for positive & healing vibes today,

Signoff

 

The picture below was taken in a year I don’t remember at Tim’s Communion, at the place we paid our respects to him today. It was an outdoor service because his parents thought he would want be a service outside to celebrate Tim’s love of the outdoors.
tims communion

The picture below is of all of his cousin’s (& his brother) on his dad’s side of the family. We missed including both his oldest and youngest sister before taking the picture, they had already left; It’s still a pretty rare thing to get a picture like this. 

cousins image for facebook

Here are a few more awesome pictures of Tim over the years. He is the one all the way to the right in the crazy pants…not that my stone-washed jeans weren’t totally in style also!!cousins funny face

They needed a woman’s touch in organizing my grandfather’s 40yr old softball team, so I’ve gotten to play a huge part in managing it over the last 5 years. Tim was our catcher for (I think) 10 seasons! These were some of his favorite people, and family members in the entire world!! Tim’s the one in blue, behind the guy in the UCONN sweatshirt.

softball team pic

Here Tim is enjoying one of his favorite pastimes, having a few beers, with his brother Pat, on my wedding day: 988829_10101891822958515_801656970_n

This is one of my favorite pictures of Tim and his youngest sister Susan one beach party before she became “cool”…just kidding, she was always cool, Tim was just hilarious: 1915105_711953821765_65565_n

And finally, the last good picture we ever took together, 2015’s Memorial Day Weekend at my Brother-in-Laws bonfire:

jeanne tim

“Everything Had Changed”

Mark Nepo is one of my favorite authors of all time. His New York Times #1 bestseller, The Book of Awakening, is a book I feel everyone should own a copy of and reference from time to time when they are in need of a spiritual lift. In that book, and in other forms of media (whether it be other books, interviews, poems, lectures, etc…) Nepo discusses how he was blindsided with a cancer diagnosis in his 30’s.

The moment he learned he had cancer was a dividing line in his life, Nepo says. He explains it with this quote, which resonates so deeply within me, “And all of a sudden, I went through a door. And when I went to go back out that door, it was gone. There was no way to get back to the life I had lived. Everything had changed.” I feel like I could use that exact same quote to explain my chronic pain journey & how my life changed with the onset of my cervical pain issues & subsequent fusion.

Up until my neck “went” on me, my pain was never the priority in my life (except for 9 months in 2006 which resulted in a “successful” back surgery in which everything went back to normal afterward). I never felt slowed down by having chronic pain until 2013, even though it plagued me for 14 years prior; I worked full time, managed to get both my undergraduate & master degree’s in Psychology (both while never requesting time off school), I didn’t take more than ibuprofen to manage the pain for years (right after the back surgery until right up to the neck surgery actually, 7 years!), but I suppose the whole time it was just a house of cards.

I knew I had more pain problems than other people around me (already having one spinal surgery before turning 21 solidified that) however, even though it was a major life-event at the time, the first surgery didn’t ruin my life, or even really change the direction it was going in. At the end of the 2006 spring semester, my best friend flew down to Tennessee where I was going to school and drove my car back home to Connecticut for me because I was unable to do so myself since I no longer had feeling in my right leg & foot. I had surgery over the summer break, spent most of the summer in the gym rehabbing and by the fall semester I had driven myself back down to Knoxville, moved myself into a new place (with the help of a few good friends), and started a new job busting my ass bartending…it was like I never even had back surgery.

Looking back now I don’t recognize that person. Partially because I’m not 22 anymore, but mostly because I don’t remember what it’s like not to have pain be on my mind 24/7. I think that’s the “door” Nepo is referring to. He wanted to go back to the life he had lived pre-cancer diagnosis, pre-everything in his life turning upside down. I think about the times when I was 22-23 often because at that age I didn’t have nearly the amount of pain I do now and did 10x the amount of activity & drinking (probably more). But, those times are gone, and in reality, they were far from perfect also.

The dividing line in my life was certainly when the unbearable neck pain began in February 2013. It was right after I landed my perfect job, the one I had been after since graduating in 2007, the one I had gone back to get my Master’s for. I still don’t know exactly what caused everything to happen as quickly as it did, but after many treatments, tests, opinions, and pain, in April 2013 I had a cervical fusion in an attempt to relieve the pain. It didn’t work. The surgery itself was successful, the fusion has fused, but the pain has never gone away like it was supposed to. Additionally, the intense neck pain triggered a number of other issues such as my narcolepsy to spiral out of control, migraines that have put me in the ER at least every 3-4 months when not under control (sometimes with scary neurological symptoms), severe back pain with left leg symptoms (instead of right this time), and a bunch of random acute symptoms that to an average person might not typically hurt but to me cause severe pain. The quote, “Everything had changed” couldn’t be more accurate.

If you’re interested, you can read in Nepo’s multiple books and poems in which his documents his attempt at understanding the “why” behind everything changing; ultimately it led him to a spiritual awakening.

“And all of a sudden, I went through a door. And when I went to go back out that door, it was gone. There was no way to get back to the life I had lived. Everything had changed.”

I, on the other hand, still find myself trying to go through the old door. I find others wanting me to go through the old door too. I find myself standing at the edge of the precipice screaming for my old life to come back…to be well enough to work, to be able to make plans to travel, to not worry about money all the time. But then I’m reminded of another Mark Nepo quote in which he says, “Can you endure your uncertainty until it shows you another way?”

Well, I think I’m going to have to, because the alternative is to walk through a door that is no longer there, which I’ve tried and doesn’t work…so here I am, enduring this uncertainty. I’ve been waiting (for what I feel is a long time) and recently I think there have been a few signs that have been moving me in a positive direction. So I’m going to keep going with the flow, I’m going to “try another way”, and see where it takes me. I hope relaying my story framed with Nepo’s was helpful in some way to you…I’m sure that I’m not the only chronic pain patient who can relate to his dividing line concept…right?

 

Sending positive vibes,

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