In several blogs to come, I will cover the next four years of my chronic pain journey. During those years, I realized that Pain and I were in it for the long haul. Pain’s presence affected every area of my life. All decisions and actions had to be weighed against the anticipated price and possible consequences: could I physically do something I wanted to do at all? If so, would it make my pain worse, and if so, how much worse? How much and how long would I suffer, and would I be able to cope with the suffering? Would there be anyone to help, and if so, in what capacity? Would I eventually burn out my helpers, and if so, then what?…and so on. It is both trying and exhausting to live that way; it’s even emotionally draining and tedious to go back now and attempt to make sense of those years. Part of me wants to skip all the drama and get right to the really good stuff I learned as a result of making it through the pain and struggle of those years (and the next three, which were the hardest of all–I will chronicle the really hard years in the series of posts titled “The Dark Years, 2003-2006).
So why go back there now? The answer is simple. I cannot explain how I arrived here, in my current relationship to pain, without exploring where I have been. I am now in a settled, comfortable, highly compatible relationship with my pain and I wouldn’t trade the process of getting here for anything. Pain has truly been my greatest teacher. Going back and revisiting the difficult years now allows me to see meaning and create resolution for myself, and (I hope) to offer encouragement, hope, and concrete help to others.
My intentions in these next several blog postings are: 1) To share my pain journey honestly, such that others who deal with pain, whose stories resonate with mine in some way, feel supported and in turn benefit from the knowledge my experiences produced, 2) To offer insight to those supporting someone with chronic pain, in hopes that they glean something for themselves or to share with another, and 3) To further open up thinking and dialogue about chronic pain and how to effectively live with it.
It’s been a challenge figuring out how to write about pain that has endured for so long. I’ve decided that the simplest method is to describe some specific events from those early years, and analyze how these situations (and my response to them) contributed to my outlook on pain today. Looking back over time, I can see how each stage of the journey has been instrumental in helping me create the workable, productive relationship with pain that I have today.
“A Mom’s Early Pain Management Strategies”
I left the comforts and security of my marriage in December of 1999, six months post-op from my first back surgery and with a significant pain problem. I had two kids, ages seven and nine, and I was nervous and excited about being on our own. My goals and ambitions for this time of life were simple: to successfully move through and beyond the pain, to be the cool, stellar mom who was there for her kids in all ways, and to become a successful career woman making a difference in the world. I assumed the pain would diminish once I was free of the confines of an unsatisfactory marriage and out on my own for the first time since college. The reality, however, was far more complicated.
Though I felt emotionally confined in my marriage, the physical space was ample. I discovered quickly that pain management was simpler when I had more space, and more control over my living conditions. My kids and I moved into a centrally located but very small house in Bellingham with two bedrooms. One, up a tight winding staircase, just barely fit a full size bed; my daughter, Shannon (age 9), wanted the privacy and put dibs on that room. The other bedroom was big enough for my king size bed, but not much else. My son, Kyle (age 7), feeling adventurous, agreed to make his bedroom in a tiny room above the garage. All of this sounded great, except that the garage was totally detached from the house, and separated from it by a large backyard. The first couple of nights Kyle tried to sleep there he was frightened by wind and other noises that permeated the room. He ended up in the house sleeping with me, which was unworkable for many reasons. The only solution seemed to be giving up my bed and bedroom to Kyle and moving out to the garage myself. Looking back, I can see how my image of what a “good mom” should do (sacrifice so each child could have his/her own room) jeopardized my own physical well-being.
The problem with the garage room was not only that it was totally separate from the house (and had no bathroom), but especially, it could only be accessed by climbing a 12-foot vertical ladder. I climbed up and down that steep ladder at least 2-3 times each night (once to go to bed, always carrying my nighttime provisions, and at least once or twice at night to go into the house to use the bathroom). Since the surgery, my back pain had been constant; navigating the ladder in the dark (and sometimes in the cold), while in the grip of unrelenting back pain, proved to be tremendously challenging.
This pain originated in my mid-to-lower back and radiated down into my sacrum (the triangular bone that ends in your tailbone). It was a constant nerve pain. Burning and fiery, it was especially intense on the left side (where the disc herniation had been repaired), but also worked its way down into both legs, around to my hips, and even into my abdomen. There was no escape, and my nightly trips up and down exacerbated the pain dramatically. Also notably, my “bedroom” roof slanted sharply; I would often hit my head if I sat up quickly in bed and I could only stand up straight on one side of the bed. Since bending over in the room wasn’t an option due to my back, the sum total amount of safe I had to function in was the length of the bed, plus two feet on one side. It was both humorous and exasperating; looking back, I can’t believe I actually did this for most of our four years in that house.
After about 3.5 years, I was having some treatments for my back and the doctor took a comprehensive health history that included discussing my sleeping arrangements. Only then, under his probing, did I realize the insanity of the situation. By this time Kyle was ten, and the doctor told me HE would call up Kyle and explain why I needed relief, and ask him if he would please take over the nighttime garage routine. Significantly, I was reluctant to ask, as it seemed to signal a failure of sorts for me; however, under the doctor’s strong recommendation I did, and of course Kyle said yes, and we switched places. It wasn’t the first (or last) time that my stubbornness clouded my ability to see clearly, keeping me in the grips of intense pain that could have been reduced if I’d been more flexible.
Obviously, I didn’t want pain to get in the way of my interactions with the kids or their quality of life. I tried to convince myself that I could be a good mom and “tough it out”, climbing in and out of the garage bedroom and attending countless sporting events — which also became scenes of nearly intolerable pain. Both Shannon and Kyle were actively involved in sports; Kyle started playing competitive baseball and basketball at age nine. The repetitive cycle of practices and tournaments involved driving and then sitting for long periods of time on hard bleachers. Sitting was (and still is), hands down, absolutely the most painful activity for me. I both dreaded and hated it. Sitting, or even anticipating sitting for any period of time, propelled me into a vicious pain cycle, which went something like this:
It began with the ever-existent baseline of pain, as described earlier. A stressor or perceived stressor (such as sitting or the prospect of sitting) caused anxiety, which I would take up and experience as tension in my neck and shoulders. That feeling of tension would cause increased anxiety, which in turn quickly manifested as even greater pain in my back and sacrum. The vicious cycle of escalating anxiety/increased pain resulted in a tight, tense, board-like feeling; literally everything from my neck to tailbone felt tight as a drum. This interplay between mind and body became perfectly and unfortunately orchestrated and predictable, so that over time, simply thinking about a stressor like sitting worked me up into the whole response.
My fear of this cycle, and my vulnerability to getting caught up in it, stand out as predominant characteristics of those early years in pain. This phenomenon initially tainted my capacity to enjoy watching my kid’s sporting events. I developed elaborate systems of using both ice packs and pillows in an attempt to alleviate the pain (and the fear of pain), so that I could be that supportive mom who went to almost all of her kid’s events. I purchased malleable icepacks in a variety of different styles and sizes, always driving to and from games with at least one down my pants. At basketball and baseball tournaments I was accompanied by an entourage of pillows, blankets, and ice packs, which Shannon sometimes reluctantly helped me carry. I finessed the use of these icepacks and pillows over time to maximize sitting comfort. I found sitting on the largest ice pack to be the most therapeutic; periodically, though, warmth and weight caused the side seams to open, spreading slimy gel all over the bleachers and my backside!
One especially memorable Seattle basketball tournament took place in a rather rough part of town. I had just had an ankle surgery, and I was on crutches. I had been staying in Seattle with my parents, and my dad drove Shannon, Kyle and me to the game. In addition to the pillows and icepacks required for sitting, I needed extras to prop up my ankle. We arrived at the tournament with mountains of pillows, some borrowed from my mom’s couch. Since I was on crutches, Shannon and Dad carried everything. Someone inadvertently set the couch pillows down in the foyer area outside the gym and we temporarily forgot about them. Shannon and I went to look for them later and found a group of kids rambunctiously tossing around Mom’s beloved couch pillows in an elaborate game of dodgeball! The kids looked kind of tough, and in any case, I was in no condition to compete with them for possession of the pillows. I didn’t ask for them back. I never told Mom what happened to those pillows, and the mystery remained to the day the house was sold two years ago–and the couch went with it!
Keeping a sense of humor during those years was absolutely essential. My memories of battling pain are accompanied by “pillow moments”, when the absurdity of situations produced by my “coping strategies” became hilariously evident. I believe my ability to laugh, then and since, is one of my best coping assets. If there is some universal truth about pain and adversity, I think this may be it: The ability to find humor in circumstances and events, and to learn not to take things too seriously, makes it much easier to cope! I learned important “pain lessons” from experience, via trial and error, and some of them I learned during a series of visits to a pain psychiatrist during those early years. I will close this blog with two things he taught me, both of which took a long time to fully embrace. The lessons ultimately have been indispensable in helping me reach this current state of peaceful co-existence with pain.
The first lesson is that each individual’s experience of pain is unique. No two people experience pain in the same way, and thus, no one can ever fully understand the personal aspects of anyone else’s pain. Knowing and accepting this helped tremendously in those early years, as I struggled to explain to myself and others and /or fit my pain experience into theirs or theirs into mine. I grew weary of even talking about pain, and once I accepted that it was MY journey, things got easier. And the second lesson, which took the longest to fully understand and embrace, but in the long run has helped me the most, is that I COULD learn to “befriend” my pain. I spent so much time early on trying to escape, power through, diminish and otherwise deny my pain. What the psychiatrist said, and subsequent life experiences revealed over and over again, is that when I stopped fighting the pain and accepted it as part of my current reality, I could learn to embrace it. Eventually, pain could and would become an ally, and when we were partners, it lost much of its power over me.
My next blog will explore more “alternative pain remedies” that helped me tremendously during the early years: meditation and mindfulness, massage, acupuncture, physical therapy, and regular exercise.