Hello Friends & Chronically Ill & Terminally Ill Survivors:
May God bless you and keep you sane, prayerful and hopeful. Pray in the morning for yourself, your family and the world. It is a journey to live ill and be surrounded by family and friends you love but they do not understand the struggle of surviving ill. Every morning you awake in pain, misunderstood, waiting on someone to be considerate of all the agony overflowing from your suffering to death state of being. The government wants to pretend we do not exist. Programs for the ill and dying are being cut by old, white haired men and women who are comfortably living with public and private medical coverage, caregiver help by an immigrant, or low income worker as the go to work and write legislation denying us, the taxpaying Americans, or former taxpaying Americans who pay for their comfortable existence and the right to die with dignity. We all need the same environment to die in peace. A clean, dry, home, clean sheets on a bed, balanced meals, our medicine, someone to care for us when we are too ill to move even to reach for a glass of water, and a little respect given to our state of suffering. We are of value while dying, lying, and waiting for the last breath to be taken. It's like, senators, congressmen and legislators think they can write us out of being in our homes, throwing sick, elderly, mentally ill neighbors, community out into the street, disgracing someone whom has earned the right to be, by denying proper housing, and money for proper health care. Family members try to be understanding but miss the mark often by being irritated or resentful they have to do for you, just lying there sick. What they do not understand is their time is coming, and who will give them mercy and compassion? . Parents need to stop and teach children how to properly care for an ill friend or family member. Being kind is the first lesson, doing what you can, offer a ride somewhere, brush an ill person's hair who has been laying a week without so much as a hello how do you feel today by the family they live with. It takes a long time to die; TV shows have wrecked our sense of humanity and compassion. Getting a warm face cloth and wiping down an ill bedridden family member without being asked. Make yourself available to serve and do what you can. Stop and prepare lunch and sit and eat with an ill family member. Go get someone trapped in the house and take him or her for a ride and have a conversation with them about life. You too are going to be the ill person you are talking to one day. Able-bodied people! Wake up and dust off you humanity, prove we are an honor bound worthy group of human beings by actions of serving. I am dying from a rare liver disease, complicated by intractable pain, Peripheral Neuropathy, a painful nerve disease effecting my standing, walking, 24/7 excruciating pain, which I speak to no one about I just bear it. My feelings have been hurt by the lack of understanding, empathy from those who claim to love me. I need something from Walgreen's right now and there is not one person I can call to get it without a bunch of" Do you need it now? Then I'll do it, then oh I forgot for two days, then resentment and irritation when I remind them they forgot, including my vitally needed prescriptions. Every month it is a big deal. What day do you need to pick up your prescriptions? Every month it is the same day and they cannot remember. Last month, they just decided to say they were going to get it then come home and say oh I did not get your prescriptions is that okay? I said no! I have been out for two days! I'm sorry I did not know, that why you should have kept your word, and picked up all my medicine. The caregivers that work thinks their lives are more important than yours. The insult of being de valued by inaction, when you were well and ran and did whatever they needed now you need the favor of basic respect of keeping their word to an ill person just laying there seems overwhelming to them, because they are so busy. The whole world is busy, let's preserve our self-respect and be a proper caregiver for God' s sake. Be kinder, listen to the pain in the survivors voice and be grateful to God it is not you and do something to relieve just a little misery from an ill person's life. My brother does not have a heart or conscious and is pretending I do not exist so he will not have to offer any emotion, assistance, or kindness. He does not work, nor pay rent. But he is so busy being busy. Too busy to walk across the lawn and say hello how are you today? Or my favorite is he tells people I am faking dying, so do not come see me. He is malicious and ignorant. He agreed to bring me ice in a 100 degree day so no one else will bring it then don’t so I will suffer. I just pray for him because his time will come. I was a caregiver even after I was too ill to work. I did what I could for whomever I could until I became bed ridden. My telephone does not ring. I am surrounded by friends and family I broke my back for helping, going, doing, giving rides, cooking for, praying for who do not even call to say hello are you still suffering to death. I just pray for them to be educated in kindness and compassion before they die. Mercy is a rare quality and giving it to a dying suffering person is honorable. I learn how to let go with grace, every day, adapt to being trapped in the house and in bed with no one to have a conversation with, how to not burst out crying when I have to ask, and ask, and ask to get a ride to the drug store once a month. Forget having what I want from the grocery store, it does not happen, so I let the want go, so I am not hurt. Let your wants go and try to sustain your needs if you are the ill one. I forgive them for selfishness, ignorance, neglect, for isolating me, thinking less of me because I am dying because I know I am still beautiful, funny, talkative, bright, but I cannot get a ride to the park for fifteen minutes to get some air. Who are we really if we cannot say we care for those ill friends, family and community with the utmost sense of duty because we know our time will come and we hope someone will be standing over us doing what is necessary to make us comfortable, keep us clean, dry, with water to drink, food prepared when we are too ill to do it ourselves. Think carefully about how you are caring for those in your life who are ill, be present, take responsibility, do what is right and hug somebody tonight who needs it. We are our brother, sisters and children's keepers. In the end all we have is our honor and the pride from our service given to our fellow women, men in their time of need. God Bless you all and I hope my thoughts have given someone enlightenment or comfort.
