Jill’s Story

Stage 1: The Acute Pain Stage (Fear, Dependency, Endless Uncertainty), is where we figured out and prepared for what my needs would be in managing my at-home care. Having limited mobility and still enduring significant pain, I arrived home with a walker, a neck brace and a weakened ability to use the entire right side of my body from the neck down, unable to use my right hand, needing help with ALL basic personal care, with meals, a bed rail to get in and out of bed and being driven to/from several specialist doctor appointments in excruciating pain. It was met with my being home-bound, on heavy opioid medications(plural), accompanied with several side effects, a teenage daughter in high school and a son in his 1st year at university a plane ride away. I was still not given a specific diagnosis nor told what happened and why I was experiencing such pain(this occurs in the next stage of my pain journey). The overwhelming goal in this stage was getting thru the day, literally minute by minute, with a pain which reminded me of the howls I could hear in our wooded backyard from animals whom I could tell were suffering in pain.

Stage 2: The Processing Stage(Loss of Identity), the stage where my husband and I met with other surgeons, desperate to find someone to take over my post-operative care, help explain my condition and offer me any relief with my pain. It is here where we find some light being under the care of a new surgeon, who asks us the right questions, offers us a diagnosis( a spinal cord injury incurred during surgery!!!) and provides us with a rehabilitation treatment plan. It is during this initial stage where I see the scared and in-shock facial expressions from friends, the truly sympathetic words and encouragement of my healthcare team (spinal cord pain management specialist, physical/occupational therapists , neurologists). It is here where altho I knew I was a loving mother, devoted wife, sister, friend and member of a close-knit community, I was totally defined by my pain. I experienced the world through my pain. It was here I found myself reentering a “new reality”(rather than “a new normal” which some explained.) Nothing was normal with this. Gaining back more ability, driving with accommodations(a “temporary” handicap sticker I request from my Town Hall the next 2 years as I continue to process), doing whatever exercises I previously enjoyed with modifications(yoga), asking for help(getting on/off), help with carrying things. It is here where I meet “Baby Goldie”, a newborn with a rare genetic disease, who I visit with in the hospital each week and hold, read to, and whose Mom I later meet and get to help navigate being a single parent with newly born twins, 1 of whom is severely compromised. It is here where I find solace and recognize the other parts of me. It is in this process I seek out and find a new community of friends in addition to the smaller, more select group I choose to remain with, who didn’t know me “before” my injury yet saw the many parts of me in spite of my difficulties. Unlike Stage 1, where my chronic pain was visibly displayed, this stage represented more of my “invisible” pain experience. Unlike in Stage 1, where I could spot a young person with a limp or a physical condition a block away, I would now pass people and wonder, “do they experience or endure an invisible condition such as pain, anxiety or depression?” It is here where I find a weekly chronic pain support group, a diverse group of people with varying chronic pain conditions, each at a different point of their pain journey. It is here where I learn about pain, and learn how to apply ways to integrate strategies throughout my daily activities. It is within Stage 2 I spend almost 3 years as an out-patient in a rehabilitation center at Burke Rehabilitation Center in Westchester, NY.

Stage 3: The Acceptance Stage (Living more with less pain). Here is when I realized this chronic pain condition/dis-ease is not going away. THIS is when, for me, healing began. This is where the mind/body connection happened and took place. I return to my Town Hall renewing my expired handicapped sticker . Only this time I request a permanent one. It is during this stage where I go off all pain medications, except for 1. I still have my physical pain along with the accompanying psychological and social challenges that are enmeshed with chronic pain. Yet, in spite of my pain, I have managed with small incremental steps in regaining a full(er), dynamic life, enjoying relationships, both old and new, with family, friends and throughout my daily whereabouts. This remains.

I still am a participant in my weekly chronic pain management group after 12 years, still learning about pain and new ways of adapting. Yet, now I return more as a guiding light to others who, like me, yearn to get through to the other side as I have been fortunate to do. During this stage I now sit literally on the side of the table as a Chronic Pain Coach, facilitating chronic pain support groups and working with individuals who deal with chronic pain.

Writing this story has taken me 14 years. Throughout this time I have learned and discovered much. I now know, time does not heal all wounds and pain. They simply fade. People heal. What we choose to do in that time heals.

My story also does not end here….