I started this blog two years ago. Then, in the middle of 2014, life got hard.
*Disclaimer: for those of you who know me and may tire of hearing me talk about these issues, please understand that I do not ask for pity. I am not the same person as before these issues. This discussion is my way of attempting to place these in a context that allows me to come to terms with the good and the bad that came from it.*
When I sat down to write this I had to stop and untangle the mass of partial memories that float in my mind as monuments to another time. It is a blur of uncertainty and fear- and a more than minor dose of pain. In 2014 I had a resurgence of a leg pain that I had dealt with early in my 20’s. At first, I didn’t think anything of it. I assumed it was a flare up related to compression of the sciatic nerve, a common malady that rest and anti-inflammatory medication is often sufficient to treat. Days turned into weeks, weeks turned into months and the pain didn’t subside. Instead the pain grew. I began the typical course of treatment for muscular-skeletal complications. I did multiple courses of NSAIDS, steroid packs, and countless sessions of physical therapy. Nothing helped. I was getting worse and nothing helped. Little did I know at that point that I would soon long for the days that the pain was manageable. It was my physical therapist that (kindly, and for my own good) declined to have any more sessions with me, for fear of causing further injury. He would be the greatest advocate in getting me to see the people that would lead to my recovery (though I was unaware of it at the time).Eventually, I met with the first surgeon. X-rays, MRI’s–nothing. There was nothing they could find that was causing these issues. I was referred to pain management for epidural injections to target potential inflammation in my lower back. I completed one of a series of three planned injections. The doctor was good, but the staff had hygiene issues that were unsafe and concerning. To address this, I made a polite inquiry to the staff and was told that I was “welcome to find another clinic.” (Note: maybe this woman was having a bad day, maybe she was just tired of people complaining- but I was polite and respectful and my comments did not warrant such a response). So, after determining this clinic’s manner of addressing patients’ concerns regarding safety practices, I took them up on their suggestion and found another clinic.
Pain management clinic #2 seemed eager to take on my case. I felt in good hands with this doctor. She had a great reputation for greatly increasing the quality of life for many patients in the area. I don’t remember the timeline for all of the treatments that were undertaken at this clinic but a likely incomplete list includes multiple epidurals, radiofrequency ablation of the sciatic nerve, physical therapy, medical massages, a slew of medications, and tordol injections.As this all unfolded my ability to walk became greatly diminished. I couldn’t walk standing upright. I couldn’t sit up in a chair, or really sit at all. I walked hunched over and with a limp. Sleep was hard to come by due to constantly needing to shift my leg and hip.
And then, it got worse. Getting to work became difficult. Driving became unsafe. I couldn’t tell when I would lose control and feeling in my leg (issue with right leg so obviously critical to vehicle operation). When I could get to work, I could only make it a few hours. It’s only in retrospect that I see how exhausted the pain was making me. Graduate school was losing. I was starting to fear for the future. My pain management doctor was convinced that this was a muscular issue and was insistent that surgical intervention was unnecessary.
And then, the pain progressed. I couldn’t drive, couldn’t stay out of bed long without pain. A new surge of X-rays and other tests occurred on my hips and back- all to no avail. Following the continued recommendation of a staff member of the pain management clinic, my doctor sent me to another surgeon who informed me there was nothing he could do to help with my pain. Depression was starting to tighten its grip.Somewhere in here was my first trip to the emergency room. It took me three hours to get out of bed. The pain was something that simply cannot be described. I was given morphine and told that because I was seeing a pain management physician they could not help me, that it was my sciatica, and that I would have to learn to deal with it. A nurse informed me to simply loose weight. Another ER visit would follow as my condition grew worse.
I had a final visit with my pain management physician. She told me I was worse than she had ever seen me and said she didn’t know how to help me. By this time it was practically impossible to get out of bed. I required assistance dressing, going to the bathroom, getting in and out of cars, picking things up, and so much more. In the end I couldn’t move my head or roll over on the bed. I couldn’t get dressed or walk or go to the bathroom without assistance. I went through periods of willing for my life to end, a desperate need to escape the indescribable torment of unyielding pain that washed over me. I was taking Vicodin, muscle relaxants, Gabapentin, and Bayer Back and Body in a vain attempt find relief. This mix led to a severe subconjunctival hemorrhage (I had broken blood vessels in my eyes due to the blood thinning effects of the aspirin).
*Note: When pain evolves over a period of time we learn to cope by developing a myriad of behavioral modifications that lessen it’s severity. This has the effect of making us unaware of how much of our lives we have changed or lost and how compromised our bodies have become. This was the case with me. I had a slow deterioration (months) that I treated with behavioral modification until the problem accelerated and found me caught in the midst of my body breaking. Now, I was well aware that nothing, save the love of those dear to me, was there anymore. I didn’t laugh. I stopped doing the things that made me, well, me. It is hard to enjoy anything, life just begins to linger.*
My doctor wanted to refer me to another physician. It is probably a very difficult decision for a medical professional to make, given that in some sense it is to admit defeat. For us, it was the realization of a nightmare- nothing could help me and no one knew what to do next. My husband (thank heavens for him) would NOT allow this. He insisted she continue to search for the source. Based on his insistence, she scheduled a STAT MRI for the next day.
The MRI was at 10am April 17th. My brother picked me up, took me to get something to eat, and then took me to get two MRI’s- one on my back and the other on my hips. I was actually feeling better this day than I had in a long time. After the visit, I was spending time with my brother before attempting to proctor an exam (at this point, things were on an as you can basis with work). At about 12pm, my pain management doctor called me. The MRI technician had called her immediately. I had an 8 inch herniation of the disc between L4 and L5 that had ruptured and was compressing my spinal cord. But the full details weren’t explained to me in that call. All I was told was that I needed surgery within 24 hours. And that she was in communication with the surgeon who I would be hearing from shortly. Within 20 minutes, my surgeon called me- I was to be at the hospital at two for a surgery starting at 5pm that evening.
The rest of the day is a blur. I was told there was a strong likelihood of not surviving the procedure. If I did survive it, there was a likelihood I would lose control of my leg, of losing bladder and bowel control, and that the surgery probably wouldn’t stop the pain. However, it was made clear to me that the only immediate surgical intervention could prevent these things from occurring anyway. Therefore, the surgery was the only option for me.
This is where my story makes a much needed turn for the better.
The team of doctors, nurses, and other hospital staff that were tasked with working with me last minute were, simply put, amazing in their proficiency, professionalism, and overwhelming empathy and kindness. On April 17th at 5pm I was taken into surgery. I had had minor procedures done before and had seen operating theaters of minimal staff and equipment, but this was something very different. No less than 6 people were working at the perimeter of the room opening tool after tool from autoclave packages and placing them on a number of trays and benches. The efficiency and speed of preparations overwhelmed my fear. As I was wheeled into the theater my hand was held tight by a wonderful woman, one of the anesthesiologists. I still remember the strength of her grip on my hand. I was so tired, I had been through so much. When I had been covered with various monitors my hands were again clasped, this time by the same woman and a man, also an anesthesiologist. I don’t remember the words that they said, but it comforted me and I drifted away.
I came out of surgery to the screams of a patient in the post-operative ward who had woken in fear, ripped out his IV, and was now in extreme pain. I have learned in the meantime that people cope with the vulnerability of coming out of surgical anesthesia in various ways. This man’s cries woke me in terror and I remember waking and waving my hands while calling out weakly. Immediately my hand was grasped by the anesthesiologist from the operating theater. He consoled me and pet my forehead and hair. As long as I live I will carry the kindness of this man with me. His gentle words, the reassuring grasp of his hand, live in my heart.
My memory floats in and out at this point, but I remember one thing very clearly. At around 6am the next morning I had to go to the bathroom. My husband, who had not left my side, was there and was the one to help me out of the bed and to the bathroom. I had just hours prior had an 8 inch herniation removed from my vertebral column and sported a fresh 9 inch incision complete with drainage tubes and and dressings and I could stand up. I cannot stress this enough. With the support of my husband I was able to lift myself straight up from a sitting position better than I had in months, if not years. With his help, I made into into the bathroom- IV and all- and was able to sit down on the toilet, and then get off of it. I will never forget the look in my husband’s eyes. The overwhelming joy and relief in the eyes of the man who had quietly suffered his own trauma while doing everything he could to save me. I was going to get better. I was already better. Good things were happening.
I passed occupational and physical therapy tests like a champ and on Sunday I was released to go home. I sat in a recliner in my living room surrounded by family and friends and had the relief of knowing things were better. Pain, when you know it is temporary and understand its origins, is tolerable and easy. Perhaps this is just in comparison, but the fact remains. My memory fades through healing. The fleeting moments- my first outing with a dear friend, a stuffed turtle from my mom that was given immediately prior to the surgery when I was stuck in bed that remains there to this day, the first time I laughed, good and full, without pain, and felt the release that comes with pure joy.
I was going to be alright. My future was mine again.
I am alright. The future is mine.
To those along the way: you have given me such strength through your kindness. We learn a lot about our community when we need them. And I did. I cannot adequately express my gratitude to those people. I hope that in some measure they know. They know what they have given me.
As I said in the beginning: I am not the same person as I was before this journey. I cannot say that I would ever chose to go through this again. However, I am a better person now. I empathize more, I judge less. More than anything, I appreciate deeply. I have learned that gratitude cannot be a passive act. We must be consciously thankful for the opportunities we have been given and the love we have been shown.
Because of the love and support of others in my personal life and in the medical community I am once again the author of my story.
For myself, and in faithfulness to their love, I will fill every page.