I Need More Spoons: Coping with Physical Challenges, Chronic Pain and Wanting to Die
This essay discusses themes which may be disturbing to some readers: chronic pain, depression, suicide. I suggest one should stop reading it when he (or she) is becoming upset.
I am not trying to upset anyone, but I offer an honest perspective of how difficult it is, at times, to live with physical challenges and chronic pain. I also hope that the positive messages within will resonate with some readers.
I Need More Spoons:
Coping with Physical Challenges, Chronic Pain and Wanting to Die
by William Land
I am conflicted. I am considering ending my life. I don’t want to end my life, but I want the pain and suffering to stop.
The pain and suffering will never stop because I am living with physical disabilities. I was born in December, 1959 and diagnosed with cerebral palsy at age six months. Fortunately, this condition was quite mild, but it has sorely impacted on my life and abilities. For many years, I walked with an unsure gait, poor balance, and lived with unusual stiffness in my back and legs.
(I wrote these words in October 2014 when I was having a very difficult time coping with the physical challenges and living with chronic pain issues in my life).
Cerebral palsy isn’t progressive, but aging will take its toll. For many years, I lived with increasingly poorer balance and chronic pain. In 1998, I started permanently using a cane.
Years pass. In late 2009 and the early part of 2010, I started experiencing more falls. Over the spring and summer, these mishaps were more frequent. I was concerned, knowing that they were not associated with cerebral palsy. After discussing this issue with my physician, he referred me to a neurologist.
In Canada, it takes significant time to see a health care specialist. Approximately, nine months later (May, 2011), I met with a neurologist. Upon completing tests and asking me questions, she thought that I may have developed Parkinson’s disease. At age 51, she told me that I was the equivalent of a non-disabled person aged 65. I didn’t respond, but I thought, “that explains a lot.”
This neurologist wasn’t certain, but prescribed medication, and a follow-up appointment. In December, 2011, she confirmed that I did have Parkinson’s.
In many ways, I was relieved. My physical decline wasn’t imagined. It was very real. It was more and more difficult to manage the activities of daily living, to attend work regularly as expected and perform well at my job, to keep plans that were made with family and friends for leisure and social activities. It became impossible to enjoy life because I was losing my ability to live what was normal for me.
I wanted to continue to work at my full-time position as a library technician in a health sciences library in a regional health centre. I enjoyed my job, but it was too challenging to attend work regularly and perform my duties successfully since the second physical disability was developing.
In June, 2012, I “hit a wall” and went on sick leave. I was very tired, worn, and discouraged; I simply could not work anymore. I had fully expected to return to work, but within a few weeks, realized this would not be possible. Fortunately, I was able to successfully medically retire with disability pensions. I had strong support from my health care team, my supervisor, and human resources staff. I am grateful to each individual for her (or his) assistance.
This retirement has been beneficial for me. On my bad days, I can rest and refocus and don’t have to worry about being at work, or letting down my co-workers. On my good days, I can do whatever I want to do or feel like doing. This is a huge blessing in my life.
I also have chronic depression and have lived with this mild long-term condition, known as dysthymia, since, I suspect, my childhood. The condition was first diagnosed for me in therapy by a competent psychiatrist in 2003. I was 43 years old. These feelings of negativity and hopelessness I experience from time to time were validated. Prior to that time, I thought these feelings were normal; I didn’t realize I was chronically depressed. This condition had a name and a form of treatment.
I know my life is rich in many ways. I am very fortunate to have a strong self of self, of the person I am, the person I became as an adult, and the challenges and obstacles I overcame in my life. I have learned to embrace life as fully as possible, to find joy in living, and pleasure and passions along my journey. In many ways, I am incredibly fortunate.
I don’t believe in suicide. I believe all life has value, but sometimes the value is less than the challenge. I know my life has value, but the daily struggle of living with debilitating conditions seems insurmountable.
I need my soul to have peace in my afterlife, and strongly believe my soul will not be peaceful if I end my life at my own hand. My strong belief in this need will likely be successful in keeping me from self inflicting my demise.
I also know if I ever was serious about ending my life, I would get myself to a safe place. That place could be a phone call to someone that would help me by talking through the issues, and/or getting medical attention. I have some people in my life that I can call at any time of day or right, and she (or he) will be there for me. I know that I can call the crisis line at the local mental health centre for immediate help.
People contemplate death by suicide because the pain he (or she) is experiencing is greater than their mechanisms for coping with the pain. Some may consider suicide a selfish act, but sometimes, the victim is convinced that others in their life will be better without them. I have never felt that others in my life would be better without me, but I have felt that death by suicide might be an option because my pain is greater than my ability to cope.
It is not easy to explain to others that I am truly unwell when I sometimes look like I am fine. The obvious challenges and poor gait associated with cerebral palsy are normal for me, but the added challenge of living with Parkinson’s disease has been taking its toll.
Over the years, I have had many competent and caring health care professionals who had aided, supported, or directed what was needed to improve my life. A regular dosage of an antidepressant has corrected the chemical imbalance from dysthymia, drugs used in the treatment of Parkinson’s disease have kept this condition under control, and I have pain mediation to use at the times when my physical pain is unbearable.
Of course, all medications have side effects and sometimes I feel like I’m living in a medication “fog” or “hangover.” Sometimes it is like I have a hangover from overindulgence in alcohol, but the drugs are needed to make life bearable or better.
Unusual fatigue is associated with my conditions. I tire easily and need a lot of rest. Sleep is restorative. I have learned and accepted that self care must come first and my body tells me when I need to sleep.
If I need to sleep at times when most people are awake and functioning, I close the blinds in my apartment, turn the ringer off the telephone (calls will go to voice mail and message will be returned), and I sleep. Sometimes, I am awake in the hours when others are sleeping. In order not to disturb other tenants in my building, I shall read quietly or work at my computer.
In October, 2014, I was at a very low point in my life. I was experiencing the worst physical pain and discomfort I had in a long time. I seriously thought of ending my life, but I knew that wasn’t the answer. Sometimes, tears would flow unbidden from my tear ducts because I hurt.
I needed answers! The Internet is a “library without walls” and offers “information about our fingertips.” I searched for credible information that would help me cope with the chronic pain and challenging depression that I was feeling.
I happened upon an article, “The Spoon Theory” written by Christine Miserandino. The URL is http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
As I read the words of this essay, I was elated to discover that I had a wonderful resource to help me explain to others the challenge of living with physical disabilities. Like Christine Miserandino, I don’t have enough spoons! Like Christine, I have had to learn how to set priorities and use my spoons wisely. I can’t do everything I need to or want to do – I must set priorities for each day.
I can make as many plans in advance as I want to make. But I don’t know until a day comes how I will feel. Sometimes, I can guess in the morning and proceed with my plans, and the day will unfold as I had hoped. Other times, I shall start on my activity and realize that I must change my plan because I am not well enough to continue with what I had wanted to do.
Christine keeps a “reserve spoon” in her pocket. This extra spoon allows her to do something she wants to do that is important to do. For myself, I hadn’t thought of it as a “reserve spoon,” but I am conscious of not doing too much each day so that I can live a bit easier tomorrow.
This forthcoming Saturday, there is a party with my extended relatives. We are having a pot luck dinner and celebrating the 50th birthday of one of my cousins by marriage. I truly enjoy these family parties – I want to be there. This means that I must save enough spoons to make it to the party!
I’ll have to make my preparations earlier in the week. I need to plan my pot luck contribution and prepare it on Wednesday to have it ready for Saturday. Thursday is my scheduled laundry day in my building and I must do some washing. Friday must be a quieter day in order to rest enough to go out on Saturday.
This is my plan. If the plan doesn’t work, for example, I am not ready to cook on Wednesday, a stop will have to be made at a grocery store for prepared food for my contribution, or I go without a dish to share which I think would be most unfair to the other guests. If I don’t get some laundry done, I’ll likely have to go in my pajamas which would be unacceptable so I need some clean clothes.
I am determined to make this party so I shall save a spoon – and even an extra one – so that I can be with my family for so much fun.
I also reach out to my community in times of need when my emotional pain is greater than my ability to cope. I want to let God decide when it is my time to leave this life – I believe my soul will go to a better place if I leave on His terms. When my soul returns, I sincerely hope it has a more reliable vessel in which to carry it throughout its new life. I would be willing to consider a strong, muscle-bound body with amazing strength for my soul. However, I believe everything has a trade off – “my” new being may not be as smart and intelligent as I am at present, in other words, as “dumb as a post!”
Nor, would he, I suspect need to have my passion for Nancy Drew mysteries and similar children’s series books. Now that truly is the greatest loss of all – a life without Nancy Drew would be a dull one indeed!
©2105 William Land