For many years, I was a chaplain in healthcare ministering to the sick and dying, now I am wearing those moccasins. I now have a better understanding of the depth of suffering one endures on this journey and how it touches every aspect of their life and the lives of those they love. I don’t think there are words that adequately describe the depth of pain and suffering a person endures when going through an illness that robs the body of the personhood.
First, let me explain the suffering. Sure, we suffer from physical pain, but for me that is not the biggest cause of suffering. Pain can be controlled by medication, meditation, and other means. I have several diseases and conditions that contribute to my pain, but so far I have been able to manage it without strong pain medication. I don’t judge those who legitimately need pain medication, especially at end of life. When my pain becomes intolerable I will accept what relief God provides.
Social suffering is also very painful. This is an area that has really affected me. I have been a social person. I enjoyed going out with groups, traveling with friends, having friends over for dinner, and just enjoying life. Now, my social life is restricted to very close friends for short periods of time. Life has gone on without me. I now have a better understanding of the deeper pain caused by loss of social interaction.
Psychological and emotional suffering are equally devastating. When I could no longer do what I had been gifted to do I felt that I no longer had a purpose to live, sadness and despair aren’t words that adequately describe the feeling. My mind and emotions were on a rollercoaster. Who am I?
Spiritual suffering also plays a part in the end of life journey. I am thankful that I am a child of God and know that my salvation through Jesus ensures my eternal home in heaven. I accept the fact that all humanity will have trials and illnesses, but all are offered the gift of salvation. My calling as a chaplain has been to offer my compassion and empathy to those suffering. My guiding scripture has been: “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. “ 2 Corinthians 1:3-4 NIV
Second, I find that the loss of my independence and my growing dependence on my husband has had a negative effect on my self worth. I have enjoyed a life of being free to help others and pursue my education and training for chaplaincy. I admit that I have taken my independence for granted, but now I know how very valuable independence is. It hurts to have the deep yearning to do the things that you have always done but now you can’t. With the loss of independence I feel I have lost my dignity too. It makes me feel worthless.
Third, humility and humbleness can’t be avoided. “When pride comes, then comes disgrace, but with humility comes wisdom.” Proverbs 11:2 NIV. I have always treated the patients with respect in hospice, in the hospital, in facilities, or at home. I have always felt great compassion and empathy for those who are sick and dying. I considered it an honor and a privilege to minister to them. I now know how utterly helpless you can become. Humility has become all too familiar.
In May of 2018 my life changed. I heard the words, “You have a neuro degenerative brain disease that is rapidly progressive, there are no treatments, there is no cure, and it is fatal. Ok, well at least now I know what I have and this doctor doesn’t think I’m crazy. But, what now? What does God plan to do with this broken body? God has a plan for me, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
As a Christian I know the promises of scripture and am sure of my salvation. Still, I am a human with emotions and fears. I have absolutely no fear of dying, in fact I am living my life on earth as a temporary stopover on my way to my eternal home. I am ready to go home when God is ready for me.
I would say the fear that hit first was loss of control of bodily functions and control and loss of dignity. This is a fear realized. Lying on the floor of an Exxon station restroom unable to get up removed the last bit of dignity I had. I would venture to say that every terminal patient, at some point, feels that they have lost their dignity. Personally, I have always been very modest and private and it has been extremely difficult for me to deal with incontinence. The incontinence has kept me from going out with friends, and doing some things I used to do for fear of having an embarrassing accident. I understand that many people have this issue, but for me it is major. That may seem extreme or irrational, but for me it goes right to my soul. My heart breaks when I decline an invitation from a friend to do something I would enjoy knowing that it would not end well. This dreadful disease has robbed me of my dignity. Hearing that there are no treatments takes away hope in a cure from the human realm. I have faith. God is still in the miracle business. I have told this to many hospice patients. I truly believe this. I have seen God perform miracles. But, my prayer is that God’s will be done, not my will. If He still has work for me to do then I pray that He makes it known to me. I yearn for the call home to be with my Abba .
I also had a fear of loss of identity. I have heard that from many hospice patients. I get it. I thought I did before but I didn’t. I get it now. Losing your identity cuts right through to your soul. I feel like I have lost myself. I don’t know who I am anymore. Everything I worked so hard to achieve is gone. I am no longer able to help others. I no longer contribute to society. I am merely a body occupying space in this world. Who am I? How can God use me now? I am still a wife, yes but one who has become more of a burden than a wife. I am still a mother, yes but my kids are mature, independent adults that don’t need me. Sure I am still a grandmother, but I rarely see my grand kids and they have their own lives to live. My great grandson barely knows me so he won’t miss me. So who am I now?
The loss of independence is equally difficult. When I first realized it was not safe for me to drive I had mixed emotions. I got my driver’s license at 16 and gave up driving at 68. I actually learned to drive at 14 so I had driven almost my entire life. Losing the freedom to drive and go where I want was extremely hard for me since I was no longer able to drive the decision was made to sell my car. That was another loss for me. It may sound silly to some, but as a hospice chaplain I spent a lot of time in my car on the road and it became my second home. I was angry because I was sick and couldn’t take something to enable me to drive. I was sad because I lost my independence. The times in my life when I have been truly angry have been few. I became angry with myself for being angry. Not only angry, I was disappointed. I should be thankful for the years I had a car and was able to drive instead of being angry for losing both. This may sound trivial, but believe me it is not. I could never put into words what I went through over this. The sad part is that by not being able to express it I was in it alone. As a chaplain, looking into the eyes of a patient, suffering was visible, but they were not always able to communicate. It is so very important to pick up on that and be with them in that moment. Presence, empathy and compassion are the kindest offerings for those who are terminally ill.
Loneliness is another issue that has had a negative impact on me emotionally. I have been a social person throughout my entire life. As my illness has progressed my social activities have become less. I have to choose wisely how to spend my energy and know that plans may change at the last minute. Since my voice is unpredictable and sometimes nonexistent, I no longer talk on the phone. I have invited friends to stop in anytime but if they are making a special trip call first to make sure that I am home. No one has come. I am not contagious. I have always made it a point to visit the sick but no one visits me. This is a deep hurt. The pain it causes comes in tidal waves. My mind comes up with reasons why no one wants to see me. My self worth, self image, value as a human, and my relationships are all called into question. This is more than just hurt feelings. This is pain and suffering on all levels.
I have a cloud of grief hanging over me. The sadness and despair gets unbearable at times. I admit that suicide has been in my thoughts. I don’t want to be a burden. But, I know how devastating suicide can be for the family. I will not give in to those thoughts.
A terminal diagnosis is a life changer. You begin to look at things differently. You can easily give up what is not important. There will be many things you will no longer be able to do. With the help of an exceptional therapist I am learning to focus on what I still have and what I can still do. Isn’t it something that I have been able to help others but not myself.
Endless doctor appointments, labs, tests, procedures and referrals are a strain on the patient and caregiver. My husband and I had discussed our end of life choices throughout our marriage and have advance directives filed at the courthouse. My desire to be allowed a natural death is firm. When God is calling me home, I don’t want anyone to interfere. I have been with many in their final days and hours and I have seen the anguish in both the family and patient. I get it. They don’t want to let you go, but you are so very tired of the struggle to stay alive. You see their tears as you hide yours and tell them it will be ok. The struggle is real. I am ready.
I’ve had to learn to work through difficult challenges and remain in control of my emotions. I’ve never been an emotional person but with this illness and diagnosis I am experiencing emotions that are unfamiliar to me. I thought I understood the emotional suffering that patients were conveying to me, but I never realized the depth of the pain and suffering. My hope is to add a little more understanding to the depth of suffering of the terminally ill.
