I received an email today from a very strong girl who I will call A. She is in the process of doing the bravest thing she will ever do but also the most difficult and confusing. Her email was as follows:
I just wanted to know how you accepted the pain and got on with life? I am spending half of my time crying and the rest of the time just whizzing around trying to forget about the pain. It’s hard, isn’t it?
“Hard” is not a big enough word for how difficult the journey of accepting chronic pain and learning how to prevent the illness from getting in the way of living. The first year for me was the most difficult and it took tons of practice. Practice never makes perfect, but it does make permanence. I took a few months off from college and practiced a routine to manage chronic pain without medication or treatment and have been practicing the same routine ever since — 14 years now!
I used to cry all the time after I left the Mayo Clinic in Minnesota. While in the pain rehab center, I was with 15 other people who knew exactly how I felt, and I was given the same routine every day for a month. Then, bam, I was home alone, and it took so much strength to keep to that routine and not fall back into behaviors that I knew would ruin all the progress I had made since my acceptance of chronic pain. I had to write out my routine every day for almost a year — a list of things people without chronic pain never have to think about.
Acceptance is the hardest part, so my reader is much further along than she believes. I love what Michael J. Fox says: “Acceptance doesn’t mean resignation. It means understanding that something is what it is and that there has to be a way through it.” I have adored Michael J. Fox since his days on “Family Ties” and his hit movie “Back to the Future.” He has accepted his diagnosis with Parkinson’s disease, and although his disease is always there, he has found a way through — not out, but through.
You do not forget you have a disease such as chronic pain or Parkinson’s disease — that is the practice of non-resistance and the opposite of acceptance. There is a big difference between forgetting and distracting and that must be clear. If you go into chronic pain with an outcome in mind or with the idea that you will one day forget you have pain, you will most likely prolong the process of living as opposed to surviving.
I live with chronic pain every day of my life. I made some room for it in my daily life so it doesn’t get in the way of my dreams and my desire to live. I have made changes in my life and I live a certain way in order to manage pain so that it does not manage me. Everyone needs to give themselves a break and slow down their expectations. You must allow yourself to cry and to feel the feelings you feel. I promise what you are feeling is normal, and I am living proof that life gets better.
But this is a journey, and it can be long, with many ups and downs. That is OK. I do not know how I got here and how I accepted pain as this disease stole so much of my life but I know I did it. I also know all of you can do the same. You are not alone. All your feelings are validated, normal, and with time and patience will pass.