How Do We Handle Guilt?

I would like to continue a topic which I addressed on another blog, “People Living With Sickle Cell”. A parent talked about guilt associated with the many twist and turns impacting the lives of a child with SCD. Most of us will equate the guilt with pain and suffering although there are many psycho-social issues affecting our quality of life. Understanding these issues requires constant dialogue, study and commitment by our community and should be a topic we consistently focus on.

Let me state from the outset, most families feel they receive adequate support from their families and friends and most feel other family members adequately assist them in care giving. Yet, many agree hospitalization and home care impacts all of the family. I want to discuss the guilt felt by those living with the disease and how they view the affects it has on the family.

I felt the topic was apropos because my daughter was moving to California and wanted to take her car. There was no one who could help her drive but her mother. Because of health issues I could not travel and so I needed someone to stay with me. My wife didn’t want to leave me and my daughter was reluctant to leave. As parents we have always told our children they have to live their lives and concern for me and my disease should not be a reason not to achieve or grow up. Therefore, what choice did I have but to encourage this new phase in her life?

I asked my 80 year old parents and my uncle if they would stay with me while my wife took the trek across country with my daughter. So good so far! To say the least, I had a vaso-oclusive episode (pain crisis), which put a lot of strain on my parents. The stress was whether I could handle this at home or required hospitalization. I handled this from home. That got me to thinking. What affect does guilt have on stress? Does guilt/stress percipatate crisis pain? How much guilt do we with SCD have? Are we a drag on our family? Do we seek the additional medical attention needed to assess our mental state?

Although the afore mentioned questions are ones we need to address, I find the question of planning for these moments to be essential in reducing stress and guilt. Because as we all know, development of self independence, adaptation, and self-determination are cornerstones of successful quality measures. As we grow from adolescence into adulthood and old age, are we prepared to deal with chronic issues and feeling of loss of control?

Morehouse College Forum

My night at the Morehouse Forum on Sickle Cell Disease was very eventful and momentous. I say that because this was my first testimonial/advocacy experience since retirement. In September of 2007, I flew to the National Sickle Cell Symposium with my wife after being invited as a patient advocate and after my first day I found myself at Howard University Hospital with Acute Chest Syndrome. To say the least it has taken me almost 2 years to recover. So as I sat at the forum I could not help but think back to what happened in Washington, D C and thank God for his many blessings.

Back to the forum. The event was sponsored by Morehouse College, Public Health Science Institute along with the American Red Cross and the Sickle Cell Foundation of Georgia. The guest lecturer was Dr. J. K. Haynes, PhD Morehouse College. On the Panel was myself, patient advocate, Cynthia A. Smith, Regional Director, American Red Cross, and Phil Oliver, Counselor-Sickle Cell Foundation of GA. A mobile unit was on site to screen students and staff for the Sickle Cell trait. In addition, on Wednesday, the American Red Cross was to be on campus for blood donation. T-Boz was expected to be on campus to drum up support for donations a National Spokesperson for Sickle cell Disease. To say the least kudos go out to Corey Lumpkin, my friend and neighbor who planned this wonderful event bringing awareness to SCD.

Dr. Haynes, dean of the the division of Science and Mathematics, spoke about the micro-biology, origin, and new advances toward a cure for SCD. One of the interesting points is if you can keep Fetal Hemoglobin production at or above 30% those with Sickle Cell Anemia would not have Crisis. He stated he thought Hydroxy urea might do it but it is not the magic bullet and does not work in many patients. One of the other statements he made regarding SCD in Africa is; there are over 180 thousand babies born with SCD and that only 5% survive. Wow!

The other interesting bit of information is since 1972 when President Richard Nixon, funded SCD screening the NIH has funded only $923 Mil ...that's all? Compared to other diseases this is oh so small. Which is precisely my point how do we as advocates help create, find and support funding initiatives. This will attract more researchers and research dollars as well as support Foundations who provide the screening, counseling and advocacy on behalf of Sickle Cell patients? In addition, according to the American Red Cross, minorities are the smallest contributors by group to give blood. How do we recruit minorities to give what most of us need to survive? How many of your friends and family think that SCD is an old dying disease and give no thought about supporting finding a cure?

It 's time to wake up...The SCD Foundations are trying to stay afloat. With funding cutbacks by Government, Agencies, Foundations, and Individuals these institutions serving our communities may become extinct. Are we willing to let this happen?

How Have You Contributed to Sickle Cell Disease Month?

Since my exit from the hospital last month, I have been trying to recuperate and fully recover. Well to say the least, I have had a few set backs, but "Praise be to God", I keep moving forward. Right after Labor Day, (a wonderful evening listening to a live band overlooking the community that puts on this yearly gathering), I went into a crisis. Upon visiting my doctor, I decided to manage the pain at home. We determined I would be able to know the warning signs of shortness of breath, fever, and uncontrollable pain which would be signs that I needed immediate attention. I am now recovering from this setback.

For those of us who have Sickle Cell Disease, the question is, "what are we doing this month which recognizes our Disease?" Are we giving time, talent or service to the recognition of SCD?Are we giving continued financial support toward the cure we all cry for during a crisis? Are we advocating or are we sitting back waiting for those who are invested in finding a cure to do something. I advance this argument because I want to know whether we who are affected with SCD intensely advocate for a cure like others such as Muscular Dystrophy, Cystic Fibrosis, etc. Are we actively seeking the funding for programs that could help Sickle Cell Foundations across America? Is there more we can do? Do we lobby for our disease? If the answer is NO then we need to turn that answer into YES!

Many of you probably ask what are you doing? I am participating on a Sickle Cell Forum at Morehouse College. The forum includes the Sickle Cell Foundation of GA, The Red Cross, and others. I will follow up with a blog after the forum. Go out and contribute if you are able!