It was one of those mornings, Spring shining through the windows. The promise of warm breezes and light jackets. My favorite way to wake up. Smiling, I lifted myself up. Wait, no. Rather than sitting up, I had remained prone. Okay, I’ll try to push a little harder. Nope. That didn’t work. Time and time again, I tried – and I failed. You’ve heard of frogs turning into princes. Well, I guess I had turned into a turtle on its back.
I happen to be married to one of those sweetheart kind of guys. Knowing that if I quietly called to him, he would wake up and eagerly help me. I guess I could say he loves his turtle. Yet, there was no morning urgency to rise. So, instead of waking him up as I had in similar situations in the past, I decided to let him sleep. This old turtle could wait out the time with prayer. Eventually, he stirred and my prince charming turned me into his princess.
The before Rose – the one who existed before a degenerative neuromuscular disease claimed her body – she would not have been given to wait out any situation. She was always having to do, to go, and to act. There are many disadvantages to living trapped in a body that doesn’t work very well, but there are some advantages, too. This morning’s advantage was to let myself be helpless. Rather than thrashing out against an unmovable force, I chose contentment.
It has not been an easy metamorphosis, and I am not changing from an earthbound, crawling bug into something that can fly in the light. My conversion is taking away freedom of movement, incremental, almost indiscernable pieces of my life – my physical life. In its place, I am finding an upside down turtle. My choices are obvious. Do I pull myself into my shell and hide away? Or, do I lie there vulnerable and patient?
Patience and contentment are choices even when my life is not upside down.
It all started simply enough. Jasper wrote a post (An Amazing Choice) about a young man, Marshall, with cerebral palsy. As typical for him, Jasper piece was insightful and thought-provoking. At the end of the piece, Jasper offered his readers the opportunity to contribute to his post.
As someone who has made certain discoveries and choices with how to live with a chronic illness, much of what Marshall had to say vibrated within me. So, I made the following comment:
“Jasper, thank you for sharing this post. Just recently, I have been formulating a concept that there is the Gift of Suffering. In its most basic form, the idea is that our suffering adds to our spiritual maturity. As we continue to add to our faith, we grow in our relationship with Christ. Once we trust God with our lives (and, we, who are disabled, know the meaning of this), we can move forward in our appreciation of God’s plan for us. One gift: tribulation develops patience; and patience, character (maturity). Another gift of suffering: we can then comfort others with the comfort that we received from Christ.”
Having the opinion that there can exist such a thing as a Gift of Suffering does not dimish the hardship that suffering brings with it. Do not misunderstand me, please. suffering is not a preferred way of life, but it can change us into more compassionate, patient, thoughtful, kind, loving, enthusiast, insightful, creative, and respectful people. There are other ways that these attributes can be added to our lives, but disabilities have a way of hurrying along the process.
Again, do not misunderstand me, please. I am not saying that if you have a chronic illness, you will automatically join the club of those who have found the secret of being content with their situation. It is a choice – always and daily. Jasper made that choice.
In a more recent post, he wrote:
“I was in awe when I realized how my experience and gradual understanding of the suffering surrounding my ABI reflected the comment you made a few months ago. I would reflect on your comment at times and anticipate a blog post in which you had developed your thoughts further. Talk about mutual inspiration and support. . .”
How many of us are done? Done with the demonstrations, the riots, the “Build the Wall” chants, the Islamaphobia, the cry to dismantle elements of our constitution, and done with hatred in general. I am. Somehow, everything has been turned upside down. It seems as if everyone is getting into the fray. Rather than working towards peace and tolerance, we are witnessing aggression and bigotry. What happened America?
Somehow, everything has been turned upside down. It seems as if everyone is getting into the fray. Rather than working towards peace and tolerance, we are witnessing aggression and bigotry. What happened America?
What happened to: “Give me your tired, your poor, your huddled masses yearning to breathe free, the wretched refuse of your teeming shore. Send these, the homeless, tempest-tossed to me, I lift my lamp beside the golden door!”
Somewhere along the way, a seething, acrid rage began to smolder in our country’s belly. Hidden behind the smiles and proclamations of acceptance, we ate the poisoned fruit of jealousy and hatred. Until, finally, with glad relief, we spewed the foul bile from our hearts. And, what happened then? Did we look upon our vomit and hastened to sweep it into the trash? No, instead we declared it good.
“Look!” we cried. “Finally, my passions of greed, jealousy, lust, pride are unbridled, and I am ecstatic.”
Honestly, how many of us can follow our roots to the indigenous people of this land? We are an immigrant-founded country. Yet, we want to close our borders to the “alien,” the “illegal,” and the “refugees.”
We blame others for our failures. Our appetites are insatiable. Just like children, we dream of the good life – which has yet to be achieved because it is unachievable. Our bellies grow as we lust after more.
It is time to grow up, America. Look in the mirror, and ask yourself In what ways am I responsible for my life? Am I willing to change? What can I do be positive? In what ways do I take offense? How often does bigotry play a part in my actions and thoughts?
There seems to be a prevailing consensus that life should be good. Period. No ups and downs. No struggles and successes. No failures. We want things the way they were – as if our memories are accurate storytellers.
Life doesn’t always have to be good. In fact, life is pretty darn hard most of the time. Many of us face financial troubles, relationship dilemmas, or health issues. Yet, we find ways to cope. When I look around me, I see potential. Everyone I encounter has the ability to do good. No matter what you are experiencing, you have the option to think well of people or to complain and find fault.
Life doesn’t always have to be good for you to be good, to do good, and to think good.
The above photo and quote are reblogged from the Eyes & Words blog site.
In 1962, Nelson Mandela, an anti-apartheid activist in South Africa, was sentenced to life for conspiring to overthrow the state. Due to international pressure and fear of a racial civil war, he was released after serving 27 years in prison.
Even though he had justifiable reasons to be angry and to encourage his supporters to seek retribution, he chose the path less traveled. His decision to forgive and forge forward is helped him to be a great leader. We all could stand to learn from his example.
Often, we imprison ourselves by our perceptions, attitudes, and thoughts. We react to situations rather than respond. Whatever situation you are facing right now, the choice is yours.
Frustration breaks our resolve, and our hearts collapse from the strain.
Chronic illness, which we must eat every day, is a fruit that’s bitter from the first bite. The monotony of our psychological diet leaves us malnourished as we struggle to find the strength to fight to live a life beyond.
So, at some point, even the brave, whose banner reads “We will find a way to be content,” find themselves prostrate on the ground. As you lean your ear to their mouth, you will hear them whisper, “It . . .is. . .just . . .too . . .much . . .work.”
Then, slowly, they bend one knee and then the other. Grasping a handicap bar, they pull themselves up. Their eyes tell the story: clear and focused on the day and its promise of pain, fatigue, trouble, and frustration. With the smiles of Mona Lisas, they ask themselves, “Do we cry out to heaven with bitter tears? Are we defeated?”
“No!” Birds scatter as the sound carries from sea to shining sea.
The more I read, the more I find a deep resolve in the Chronic Illness Community. Our struggles cannot be easily understood by those who do not experience the realities of our daily lives. At times, darkness settles on us, and we do not have the energy to fight. The length of time it takes for the depression to lift is unknown, unpredictable, and capricious. We know it will release us, eventually. However, in those bleak moments, it is just too much work. We need to remove ourselves from the demands around us.
Nevertheless, the more I read blogs written by people suffering from the wide blanket of chronic illness, the more I am amazed at their spirit. The heartbreaking and heartwarming stories carry the same underlying theme: It is just too much work, but I will not give up.
I love this aspect of my community. For the past six years, I have been determined to live despite my disease. I want to do all that I can for as long as I can. Sometimes this means tackling two steps to enter a friend’s house. Sometimes it means that I spend time with family even though I can hardly stay awake. Other times, I need to listen to my body and bow out of activities I was looking forward to attending. In the end, I have articulated my determination into the motto Never Give Up.
Often, I see wheelchair-bound people without any spark in them. My heart bleeds for them. Could it be that their resolve has been broken by daily frustrations? I watch them look at me, then my wheelchair, and then into my eyes. I smile a little; they smile a little in return. As we engage in an easy conversation, their words expose their pain. The mirror reflecting their value is cloudy, and their reflection distorted. In the midst of despair, they fuss and find reasons not to participate in any activities. Even though we both hope that the feeling will pass, their eyes reveal their secret. As they complain to me, they are covertly saying, “I don’t want to do anything. It’s too much work.”
They’re right. It is too much work – but, we will encourage one another to do it anyway. After all, what are our choices?
Recently, I read an article wherein the author, who has lived with a chronic illness his entire life, was lamenting how he felt pressured to “put on a happy face.” His main complaint focused on the inability of the people in his life who were reluctant to address the depression and dark moments that the chronically ill face, especially death. The author was angry that he had no outlet to express his feelings. Due to his chronic illness, he has spent long periods of time in hospitals. As a result, he has met and lost friends. Death is a strong, real presence in his world. Now, he is facing a serious deterioration in his condition, and death cannot be ignored any longer. In fact, I got the feeling that he doesn’t want to ignore the topic of dying. He is angry, frustrated, and depressed. Inasmuch as he is in a troubled state of mind, he extrapolated his feelings to include all chronically ill who are facing death. He believes that anyone who chronically ill and at peace with death must be “faking it.”
Due to his chronic illness, he has spent long periods of time in hospitals. As a result, he has met and lost friends. Death is a strong, real presence in his world. Now, he is facing a serious deterioration in his condition, and death cannot be ignored any longer. In fact, I got the feeling that he doesn’t want to ignore the topic of dying. He is angry, frustrated, and depressed. Inasmuch as he is in a troubled state of mind, he extrapolated his feelings to include all chronically ill who are facing death. He believes that anyone who is chronically ill and at peace with death must be “faking it.”
While I acknowledge that dark moments are part of the human psyche (chronically ill or not), not everyone fears death. Personally, I know of three people who were at peace with the inevitability of their death: my first husband, my niece, and a friend. However, I have also watched others who faced death with anger, fear, and resentment.
There are at least two issues underlying the ranter’s anger: (1) The perceived pressure to “put on a happy face” when the author would rather have talked about his impending death, and (2) the author’s assumption that everyone fears death. In fact, the author went so far as to say that if the dying person was content with the situation, then they were faking it. He said he hated those fakers.
I feel sorry for the author. He is facing the end of his life, he is angry, and he can only see the world from his point of view. To be at the end stage of your life and only see bleakness is a horrible way to spend your remaining days. I am also sorry that he does not have the support that he needs. (I wonder if the support is missing or if the support is not what he wants to hear.) Many people do not want to talk about death and they do not want to be around angry people. He might be in a Catch-22 situation. No matter what the specifics of his situation, I wish there was something that could be done to help him.
My chronic illness puts me at risk for a stroke or sudden cardiac death. Rather than churning my insides into a rancid soup of anger and hatred, I made the decision to be happy and do as much as I could for as long as I can. One of my new mantras is Don’t Give Up – Ever. I fear that the author has given up – on themselves and on others. Hence, the Great Divide and why he can’t understand how people can choose a different approach.
If we were to meet one another on happenstance, I wonder how the author would react to my words? Would he believe me that not everyone fears death? The range of feelings surrounding death are as varied as there are people. It is not a simple matter. In truth, the way we feel about death has a lot to do with the way we feel about life.
The three people I mentioned at the beginning of this post (who were ready to face death) were Christians. Whether or not you believe in God is not the point. My point is that Christianity gives the believer hope about the future and strength to face the present.
Please don’t misunderstand what I am saying. All three people had to deal with pain, a slowly deteriorating body, and dark moments. Still, spending time with them was a rewarding, enriching encounter. The more that they released themselves to the passing, the more serene they were in spirit. They had hope and a vision.
On the other hand, I have known people who did not have faith in God. As they faced death, the angrier they became. They spent their last days spewing hatred. Their beliefs had a deep impact on their feelings and psyche. Before you jump all over me, I know that there are people who do not believe in God but have passed away in peace. Still, there is a Great Divide about facing death.
Because you believe something doesn’t make it true. Your perception is a reality, not the reality.
Take my uncle for example. Diagnosed with myotonic dystrophy in his 40s, he was scuttled off to live with his 82-year-old mother. As soon as he heard the news, he was done. It was his free ticket to sit all day, watching television, while his mother did all the work. He did nothing – not one thing.
For four years she waited on him. By the time my grandmother was 86, she needed help herself. So, we made room, and they came to live with my family and me. Four adults and two children in a three-bedroom ranch. The roles were modified. Now, my grandmother and uncle both sat and watched television from morning to night. They did not
participate in any family events. They did not want to do anything. They did nothing – not one thing. I did all the work. It was okay with me. I did it because it needed to be done. No expectations and no rewards.
So, what was my motivation? My grandmother and uncle needed help. Neither one had ever been kind to me. It was a fact. I didn’t care. The relationships were determined the moment I was born. (Probably before I was born.)
What does this have to do with truth and perception? My uncle was a skeptic. He would tell me I had an ulterior motive. “What motive could I have?” I would ask. “You have nothing. Grandma has nothing. I am taking care of you because you need a caregiver.” He never answered the question. He refused to believe that I took them in because they needed help. He would not (could not?) understand that their lack of grace towards me did not determine my actions towards them. He could only see life as a reflection of himself.
Grandma’s point of view? I don’t know. She would tell me stories of her life. In all of them, she was the sad victim. I would wipe her tears. Unhappy and dissatisfied, she looked at life through a glass streaked and stained with misery.
Today, I live with myotonic dystrophy. I do not sit all day watching television. I write, read, and paint. In addition, I visit people and invite people into my home. I attend church, a writer’s group, and a painting class. What do I see? Hope and love. Why? Because my belief is based on a faith in God.