I was in K-5, sitting hunched up under the great big pine tree on the recess field reading my science book. It was an ache and burning feeling. That aching and burning have become a constant companion over the past thirty five years.
Many people don’t know this about me: I live in constant pain. Several people in my family either deal or dealt with lifelong pain due to inflammation of the joints and spine. I remember the first time my spine hurt for no reason. I was in K-5, sitting hunched up under the great big pine tree on the recess field reading my science book. It was an ache and burning feeling. That aching and burning have become a constant companion over the past thirty five years.
Sitting and laying are unbearable lately. People often remark that I am in constant motion. Well, yeah. I hear often that I need to rest, to not be so active. Nope. Not with my inherited condition. Doctors constantly push pills at me. I don’t like narcotics and regular NSAID’s do nothing. Besides, I’m kind of attached to my liver. I rely mostly on diet, activity, and shear will power.
Over the past three decades I’ve become an expert at living with chronic pain while continuing to live. And yes, there have been times I’ve beg Gd to kill me. I get sharper tonged, grouchy, and the fact that I’m a bit ornery to begin with can make me unpleasant company at times. I retreat and people think I’m sullen or broody. In reality, I’m trying not to cry publicly, or scream, or simply pass out.
So, how do I deal with it? And if you have a loved one, what can you do other than stand helplessly by or hover? Glad you asked.
How I Deal
I learned along time ago to accept what I cannot change. I cannot change my body. I cannot change how I was born. I cannot rail, or yell, or punch or kick it away. It is simply a part of my physical self. I had to accept that my body is painful, just like my body is graceful in dance. I love my body wholly, and I’ve come to have compassion for her. I care for her, give her nourishing foods and herbs, attend to her needs, and allow her the movement she craves while setting boundaries for rest. I do not try to change her. She simply exists, and I love her simply because she is my dwelling on this portion of my eternal journey.
I courageously change what I have the power to change. Sitting in an office all day was the worst occupation for me. I had to power to change that portion of my life. It was terrifying. I did it. Somehow accepting my circumstances has freed my inner hutzpah to take challenges, to push my limits, and to explore this beautiful world emotionally, mentally, spiritually, and even physically. But more importantly, I’ve learned to change my attitude.
Learning to know the wisdom between what I must accept and what I have the courage to change has been the difficult part. It is an ongoing process called life’s education. I tried for the longest time to change my body, to control my life’s circumstances. It left me haunted and fearful. There are times I see a counselor to assist and asses what I wish to change. There are times I meditate and simply listen to the Inner Light. Wisdom to know when to accept and when to act is the balance. It is the subtly between bitterness and a full life.
But my loved one is suffering – How do I help?
Simply ask. Allow them to do what they can do when they can do for themselves. Stephen Hawkings was considered an invalid by his life’s end. Yet, he contributed to our understanding of the universe. Not every person has that chance. Allow your loved one to explore this world. Pray. Care for your own needs. Don’t be a martyr for anyone. And for Gd’s sake, don’t hold us up as more than human or make excuses for poor behavior. That’s a disservice to everyone.
Understand that there are good days when the pain is less. Understand that there is often a mask, and even when we say the world is perfect, we are still in pain. Allow us the space to drop the mask. Don’t ever pity us, because we are not our illness. We simply exist at this time in this state, just as you do. Accept us just as we are, just as every person needs to be accepted.
If you are struggling I hope you may find your Serenity, too.
Until next time,
Craft No Harm,