Living with Chronic Pain
Since 1994, I have lived with chronic pain due to physical issues. Since birth (1959), I have lived with pain issues.
I was born with cerebral palsy; fortunately, it is mild in comparison to what this disability could be. With this condition, I lived my life as fully and as richly as possible. I learned at a young age to do what activities I could do well, or with practice, and to accept those which I could not do easily or with practice.
I have always lived with pain due to emotional issues including depression. Sometimes I felt like I do not “fit in” with very well other people in society. I wasn’t “disabled enough” to fit into the disability community, or “normal enough” to fit in with non-disabled individuals. Where do I belong? It is like trying to insert a square peg into a round hole; it simply doesn’t fit.
My childhood was very difficult for many reasons. I realized in later life that my parents did the best they could do for me. They may not have given me all that I needed, but they did their best. I may never forget some of my painful moments, but I choose to let many of the unpleasant memories stay in the past where they belong. I have accepted it as being what it was.
My adulthood has been difficult for many reasons. I struggled at finding and keeping meaningful and lasting employment, unsuccessfully searched for a lasting life partner, hoped for financial security and wanted an attractive, permanent home. Some difficulties came from my own mistakes and poor decisions; others came from Fate.
Luckily, I always had a job or an income while looking for work, a large circle of caring family and friends, some very close people who shared the deepest joy and challenges of my life with me and a roof over my head. Each job or place I lived many not have been exactly what I wanted, but they provided for my comfort at the time.
For eight years, I was very blessed to live in a large, spacious apartment that suited my soul. It saddened me to leave this lovely home, but I was so very lucky to move to GraceLand, the home I share with Wendy Grace (a dear friend who opened her heart and home to me in 2015 to help me manage my life more easily).
In 2003, I was diagnosed with dysthymia disorder, a consistent mild depression. I always thought it was normal to feel the negative thoughts and hopelessness I sometimes felt. I didn’t realize I was clinically depressed.
In 2011, I was diagnosed with Parkinson’s disease. This “double whammy” of living with two physical disabilities has been extremely challenging. It is so unfair! Sometimes I am angry that I lost so much of my life to this new health issue. This loss of much of my independence is huge; I must depend on others to help with the activities of daily living and being mobile in my life.
Soon after my diagnosis, I told my family. Two of my brothers made similar comments: one said, “you’ve had a rough life;” the other said, “you’ve had a tough life.” My response to both was “in some ways.”
Prior to the Parkinson’s diagnosis, I described my body as having “the flexibility of cement.” Post-Parkinson’s, I have “the flexibility of stone.” Much of the stiffness in my body feels like a thick rubber band which has been stretched taut (almost to the breaking point), but cannot be stretched more because it will break. If the band breaks, it can be repaired, but the repairs will be noticeable and the band will not have the same flexibility it had in its original state.
I must live with chronic pain due to my issues. To cope well with this challenge, I must deal effectively with chronic pain. I must remember to implement the lifestyle practices and habits that make me feel better.
These include daily meditation, eating better, regular exercise (which is so very difficult for me), practicing gratefulness, embracing my hobbies and passions, and living at GraceLand. I must remember my strong support network of family and friends who care about me and my well being.
I must remember that I may not have all that I want in life, but I have all that I need. I have a comfortable home, a strong, supportive network of family and friends, an adequate income for “the basics” and “some wants,” and my interests, hobbies and passions.
I must remember not to dwell on my pain. It is very acceptable for me to tell someone that I don’t feel well and why; it is not acceptable for me to talk about incessantly about chronic pain. I must always remember the wisdom of stress expert and humor consultant, Loretta LaRoche: “fake it until you make it.”
Other wisdom I must always remember came from:
• my grandmother who told me that I “could be anything I want to be in life.;”
• a long-time friend who reminded me recently that I am “determined and resourceful;”
• a close aunt (living with age related macular degeneration) who told me that her positive attitude about living with disability has been inspired by me;
• a close friend (living with physical disabilities) who revealed she uses sometimes me as inspiration when she is seeking answers to her own pain issues;
• a doctor (pre-Parkinson’s) who told me that he “uses me as an example to the parents of his child patients as someone who can live successfully and independently with a physical disability;”
• a doctor (post-Parkinson’s) who commented “you have successfully overcome many curve balls in life.”
• my own belief, which I learned from my mother, for when I am in extreme pain: “this, too, shall pass.”
Life is not easy, nor do I expect it to be. Some people, like me, have higher hills and deeper valleys to travel than other people. It is what it is.
Many years ago, I promised myself that I would end my life when I felt the pain was too much to bear. I also promised myself that I would be certain it was time before I did anything to complete suicide. I recognize that any person considers suicide when the “pain of living is greater than that person’s ability to cope with the pain.”
Approximately five years ago, I was in such pain. I thought I couldn’t manage my life’s journey successfully any longer. I realized that I needed help from a higher power. I am a spiritual (not religious) person. I appealed to God for the strength to cope.
My prayers were answered. I learned that I could ask family, friends, co-workers and neighbours for help to manage the tasks that weren’t easy for me to complete. If everyone does a little, no one person must do a lot and people are happy to help when they can.
My belief that suicide is a possible answer to ending chronic pain is a contradiction to what I believe will happen to my soul when I die. Only God must decide when I die. When I die, my soul will go to a better place; a place where I shall live without disabilities and pain. However, my soul will not be admitted to this welcome, needed, nurturing environment if I end my life at my own hand.
To reconcile these opposing viewpoints, I continue to pray to God for answers and help when necessary. I thought of not writing about suicide in this narrative, but realized it would not be a true expression of my strong feelings about living with chronic pain if it were omitted.
I cannot give up on living my life, especially during the all too frequent times when I am very fatigued or depressed. I must remember to be glad for what life offers. I must remember the people I can call any time of the day or night when I am hurting. I must remember that I do not have to look very far to find someone who is worse off and coping better than me.
For several weeks, earlier this year, I have struggled to describe how living with disabilities and chronic pain affect me. I am weary of this fight. Some people with whom I’ve talked about this feeling have suggested that “fight” is a negative word and this journey should not be described as such. Suggestions to replace “fight” included “determination,” “resourceful,” “walking with my pain.”
While these words are less negative, they do not resonate completely with me. I choose “fight” as being my accurate, but not necessarily a negative, expression of living with disabilities and chronic pain. I do not see anything positive about living with disability and chronic pain. I am not saying that those who have these challenges cannot be happy and enriched in life (the reverse is true), but owning disability and chronic pain is not positive to any person. I cannot think of anyone who has said, “I want to live with disabilities and chronic pain. Fate, pick me!”
For me, the words of “fight,” “battle,” and “war” are empowering to describe living with disability and chronic pain. It is a daily war to live with these conditions. I know I shall win many of the fights and battles and lose others. I shall continue until my last breath to participate as well as I can in the war against living with disabilities and chronic pain.
My disabilities do not define me. I am much more than my disabilities and my chronic pain.
I must remember when the pain feels greater than my ability to cope, I must withdraw into myself for short periods to heal. I must call upon God to help me along this challenging journey. At the same time, I also must remember to thank Him for the numerous blessings which enrich my life.
“With pain comes strength.” I never knew how strong I was until I encountered chronic pain. — J.B.G.
Revised: December 5, 2016
November 29, 2016