When someone asks me for advice on how I manage my Crohn’s disease, of course a lot of my suggestions are related to the physical body. The first recommendations I typically provide are related to sustenance – such as various Crohn’s friendly dietary options. And, a list of foods that I avoid because they are difficult to digest. For the first twenty-one years of my disease journey, nutrition (along with doctor prescribed medication) were the main emphasis in my approach to managing my Crohn’s disease.
After a two-year series of flare-ups and hospitalizations (from 2011 to 2013), I came to realize that managing my mental health (particularly anxiety), was just as important as treating the physical symptoms. And, that the two together – emotional and biological – are an important, holistic approach to wellness. My mind also needed sustenance and healing to thrive on this journey.
During this two-year period (for the first time since my diagnosis) I did not feel like I had any control over my body’s response to food or medical treatment. This feeling of helplessness caused me remarkable anxiety. I think I have always had a healthy degree of anxiety. But, up until this point it motivated me in a positive way. Nervousness forced preparedness. Anxiety drove accomplishment. But, during this period, anxiety was not benefitting me in a positive way. The uncertainty of when I was going to be in the hospital, the frequency and lengths of stay and the fear of not being able to regulate my disease were beginning to take a psychological toll.
Also, the number of doctors I was seeing was increasing. The medical issues were confounding. The prescription types and quantities were amassing. And, I was not getting better. It was a very difficult time.
Relief came, eventually, from a very unlikely source – my physical therapist. We were discussing options for pain management. I had a lot of scar tissue from dozens of surgeries and had developed pudendal neuralgia in my pelvic floor. (It would be a few more years, and several more doctors before I had the correct diagnosis – pudendal neuralgia. And, the cure.) But, she was helping me manage the excruciating pain in my butt – lol.
It was painful to sit or have bowel movements. It was painful if I walked too much. It was so painful, it was hard to have a thought without being distracted by it. I had tried everything the doctors suggested – surgeries to try to remove the tissue, warm sitz baths, heating pads, biofeedback, yoga, specific exercises focused on my pelvic muscles, a tens-unit to block the pain, botox injections in that region, valium suppositories and, the very worst therapy was daily pain medication. I felt like I was a shell of myself. I was tired all the time and my life revolved around my pain. And, I was the busiest I had ever been at the same time. Teaching college courses, raising very young children, moving from Pennsylvania to New York to be closer to family, because the unpredictability of my health and the help we required had become too much. My health was out of control and all consuming.
One of the best tools my physical therapist gave me was a set of two CDs by Jon Kabat-Zinn. She gave the CD case to me and I threw it in my backpack and thought – “what is this going to do.” I really didn’t think that I had the time to figure out mindfulness meditation. I asked her – “can I listen to this on the car ride home?” She said, “you can, but I don’t recommend it.” She explained that I should be in a relaxed state. And, she laughed saying, “I wouldn’t want you to fall asleep in the car.” I can remember thinking, “I haven’t had a good night sleep in two years.” That is what enticed me to try the two CDs. Not trying to fix my emotional state. Not hoping for transcendence or a deeper understanding of life. I just wanted rest.
That very night, I went to my bedroom. Turned down the lights. Put a soft pillow under my head. And, two pillows under my knees (to take the pressure off my pelvis). Popped the CD into my computer. And, then . . . listened. The music in the opening sounded hokey at first. But, the more I listened, the more relaxed I became. Mr. Kabat-Zinn’s voice was so calm. His prompts for thought brought me peace that I had not felt. (Ever!) This serenity put me to sleep.
Sleep is not necessarily the goal of mindfulness meditation. Nonetheless, it was something I desperately needed. I started listening to the CD’s nightly. After a few weeks, I perfected my relaxation. I traded out my computer for a boom box, so that the light in the room was less distracting. I was able to get further and further through the CD without falling asleep. But, still getting an incredible sleep at the conclusion of the session. The repetition of his voice and the prompts were not as mundane as you might think it would be. Each time I listened, I HEARD something new. I tried and thought less, and therefore gained more.
Pretty soon, I wasn’t just getting sleep from these CDs. But, insights. Those insights are something that I will talk about frequently in this blog. I didn’t realize that being anxious, was causing me to breathe the most shallow of breaths. All day long. Just learning to take full, deep, conscious (at first) breaths was healing.
I still needed the plethora of other doctor endorsed therapies, for several more years after my mindfulness meditation discovery. Nevertheless, this new tool was life changing. I learned how to nurture and provide sustenance for my mind. To live in the present. To find peacefulness and tranquility in small places. To sometimes lose myself in beauty and quiet.
I knew that stress and anxiety were not productive for Crohn’s disease. But then again, it was a vicious cycle. My Crohn’s disease was also the CAUSE of stress and anxiety. Because my physical therapist took the time to introduce me to Jon Kabat-Zinn (and, ultimately a strategy for relaxation), I was finally finding still, soft, peaceful moments each day.
Treating my mind well, was exactly what my body needed!