Russell Simmons "Young Voices" once again highlights Jasmine Baily's powerful spoken word on coping with pain affecting those with Sickle Cell Disease. Enough said!
http://www.youtube.com/watch?v=1OKkzFlWvbA
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Sunday, February 12, 2012
Thursday, February 9, 2012
No One Should Be Alone
On Facebook a colleague ("Mindful Heart for Sickle Cell"), posed a question relating to being hospitalized alone and with no family or friends by your side. It sheds light on many facets of our life such as; despair, self worth, and contiuous unhappines. If we are fortunate we have family members and or friends who are concerned and understand our disease, willing to be by our side to comfort and encourage us. Some of us are so unappreciative that we run those who care about us away. We must be mindful that others give to us from their heart.
When I was a youth I knew that my family was there for me. Although I didn't know I had SCA. My parents would always say I was anemic but not that I had SCD. When I would hurt they and my brothers would rub my aches and help me get my mind off the crisis by singing to me or helping me imagine my victories over the pain. I say this because other than college and my first job, I can't remember when I was alone and checked myself into a hospital. After getting married in 1981, I have never been alone. My wife has always been by my side. Between her and my father they have slept in the same room with me on every admission. That's love and devotion. And I thank God for it.
Back to my comment regarding "being alone". I wrote on the Mindful Heart webpage, "My family talks about this all the time when I am hospitalized by a Crises. My wife is a big proponent of looking out for care givers and realizing who has little or know support. When I feel better, I try and talk with patients who are willing. I am careful to assume a patient has SCD and sometimes that's a problem because a lot of us are not willing to talk about our disease in the public domain." Therefore, I do feel there are a lot of us out there who can have a much richer and more meaningful life if we seek each other out.
One more comment. If there is no one with the patient how do they know they are getting proper treatment? This is not to say that those of us who have SCD don't get proper treatment in hospitals yet we've all had opportunites to question our care. Typically the patient is concerned with pain management and not necessarily with other treatments and testing. My family motto has been, "caregivers watch the caregivers" because who cares more about you? This is why I strongly suggest the we visit each other, talk to each other and pray for each other. No one should be alone.
When I was a youth I knew that my family was there for me. Although I didn't know I had SCA. My parents would always say I was anemic but not that I had SCD. When I would hurt they and my brothers would rub my aches and help me get my mind off the crisis by singing to me or helping me imagine my victories over the pain. I say this because other than college and my first job, I can't remember when I was alone and checked myself into a hospital. After getting married in 1981, I have never been alone. My wife has always been by my side. Between her and my father they have slept in the same room with me on every admission. That's love and devotion. And I thank God for it.
Back to my comment regarding "being alone". I wrote on the Mindful Heart webpage, "My family talks about this all the time when I am hospitalized by a Crises. My wife is a big proponent of looking out for care givers and realizing who has little or know support. When I feel better, I try and talk with patients who are willing. I am careful to assume a patient has SCD and sometimes that's a problem because a lot of us are not willing to talk about our disease in the public domain." Therefore, I do feel there are a lot of us out there who can have a much richer and more meaningful life if we seek each other out.
One more comment. If there is no one with the patient how do they know they are getting proper treatment? This is not to say that those of us who have SCD don't get proper treatment in hospitals yet we've all had opportunites to question our care. Typically the patient is concerned with pain management and not necessarily with other treatments and testing. My family motto has been, "caregivers watch the caregivers" because who cares more about you? This is why I strongly suggest the we visit each other, talk to each other and pray for each other. No one should be alone.
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