Interview of Deborah Slappey Pitts, Author of "I Feel Okay"

Reader Views is happy to have with us Deborah Slappey Pitts. Deborah’s writings of short stories, essay, and poetry span some 35 years. Welcome!

Irene: Your book “I Feel Okay” is about searching for a cure a disease that not many people have heard of. Please tell us about the disease.

Deborah: Primary amyloidosis (AL) is a rare disease of the immune system that affects roughly eight people of a million annually. The disease is not cancer, but the effects on the major organs of the body can be just as deadly as cancer. Amyloidosis is an abnormal protein that is deposited into any of the body’s tissues or organs by way of the bloodstream. The disease results when enough amyloid protein accumulates in the tissues or organs in the body to cause the tissue or organ to malfunction.

The accumulated amyloid protein causes the progressive malfunction of the affected organ. The heart, kidneys, nervous system, stomach, and liver are most often affected. In Clyde’s case, the accumulated amyloid protein caused his heart to malfunction, so he blacked out.

It is interesting to note that primary amyloidosis (AL) has some characteristics of a blood cell disorder and occasionally coexists with multiple myeloma. Multiple myeloma is a cancer of the plasma cells in the bone marrow. At first, the doctors originally thought that Clyde had multiple myeloma.

Irene: You took a huge mission to find more information from a medical community that wasn’t able to communicate with you regarding your husband’s disease primary amyloidosis. Tell us what inspired you to write a book of your experience.

Deborah: From the very beginning, after Clyde’s death, I wanted to tell his story so others would be educated about the devastating effects of primary amyloidosis (AL), but I didn’t have the strength to talk about our family’s tragedy. The best that I could do then was to create a website in 1996 about primary amyloidosis and I hoped others would read about Clyde’s story and primary amyloidosis, from a personal perspective. It took me nine years to finally tell Clyde’s story in I Feel Okay because I wanted my sons (Clyde Daryl and Alex Keith) to know what happened and to leave them a legacy of their father.

I also wrote the book because I had a strong desire to educate the public about the devastating effects of the disease so others would learn about the disease and to avoid another tragedy. I’m thankful to say that Clyde’s story has helped other people who are currently diagnosed with primary amyloidosis (AL).

Irene: It doesn’t seem that you had much support from the medical community at large. Have you lost faith in it?

Deborah: I would had hoped for more support during Clyde’s initial diagnosis of the disease, and during the early years of living without Clyde, I was very disappointed with some of the doctors who treated him. But I must say that the support and understanding that we received at The Mayo Clinic was absolute treasure! I won’t ever forget the love and generosity that was transparent in the eyes of Clyde’s physicians and nurses as caregivers.

And, no, I haven’t lost my faith in the medical community. I have a tremendous respect for the men and women who work in the health care profession on a daily basis. Now, I’m more cognizant of taking “charge” of my health care by asking questions of the health care professionals about alternative solutions to the suggestive mode of treatment. I believe in accessing websites such as WebMD as a source of information. This has been very helpful to me and my family.

Irene: I understand that primary amyloidosis can be managed with medications. How much manageability is there with meds?

Deborah: Currently, there is no cure for primary amyloidosis (AL). But, primary amyloidosis (AL) can be managed with medicines. The abnormal amyloid protein that builds in the bone marrow can be slowed or even stopped, if it is diagnosed correctly and in time to stop the massive build up of protein fibrils.

Currently, doctors are treating patients with primary amyloidosis (AL) with a regimen of chemotherapy therapies to include melphalan and colchicine to respond to the abnormal plasma cells. Additionally, physicians will also consider bone marrow transplantation to introduce healthy cells into the patient. Bone marrow transplantation involves using high-dose chemotherapy and transfusion of previously collected immature or new blood cells (stem cells) to replace the diseased or damaged marrow. These cells may be harvested from the patient’s or from a donor.

There are success stories in the treatment of primary amyloidosis. I know of a person who has survived more than 18 years with the disease. Again, the key is to be diagnosed in time to slow or stop the massive build-up of the protein fibrils in the body.

Irene: You mention being diagnosed early. What are some of the signs that point toward primary amyloidosis?

Deborah: If diagnosed early, primary amyloidosis (AL) can be slowed and sometimes even stopped in its production. I was very heart broken when I first learned this fact. I believe that things would have turned out differently if Clyde would have been diagnosed in time.

Symptoms of primary amyloidosis (AL) are pretty much consistent with other diseases. When considering the diagnosis, a physician should study the symptoms of primary amyloidosis (AL) in totality, not individually. During my extensive research, I discovered the following symptoms for the disease: Swelling of the ankles and legs, general weakness of the extremities, weight loss, shortness of breath, numbness or tingling in the hands or feet (This symptom can be associated with carpel tunnel syndrome.), diarrhea, severe fatigue, enlarged tongue, feeling of fullness after eating smaller amounts of food than usual, and finally, dizziness upon standing.

It should be noted that amyloidosis can be diagnosed only by positive identification using a special Congo Red stain on a specimen of the amyloid fibrils. The normal diagnostic preparations in a laboratory will not yield a correct diagnosis of the amyloid disease.

Irene: The disease is incurable. Is there research going on right now for a cure?

Deborah: Yes, as I mentioned earlier, there is no cure for the disease, but medicines and therapies are available to slow or stop the progression of the build-up of the amyloid proteins in the body. Currently, The Mayo Clinic and Boston Medical Hospitals are the leading hospitals in research of the amyloid diseases. Throughout the last 10 years, these two hospitals and others have continued research for new medications and therapies to combat primary amyloidosis (AL) and other amyloid diseases.

Irene: You attribute a lot of your strength and courage to your faith in God. Please tell your reading audience how you personally were able to surrender your will to God and strive for keeping the journey in His hands.

Deborah: God has guided the Slappey family through many ordeals. And when we were faced with this very rare disease, a disease that we didn’t know how to spell or pronounce at first, I naturally turned to our Heavenly Father to guide us through this heavy storm in our lives. Nothing can be added or subtracted from God’s word. He says in Proverbs 3:5-6, to trust in His word and not to rely on our own understanding, and to acknowledge Him to direct our paths. And we did.

Clyde and I knew that this disease was bigger than both of us; we had to rely on God’s unchanging hands to help us through this awful storm in our lives. God is all knowing and all seeing, and we were willing to surrender all to him because we had nothing within ourselves to change the reality that Clyde was suffering with this deadly disease. I also knew that if it was God’s will to cure Clyde, he would be cured. I had complete trust in God and I surrendered to His will.

Irene: Sometimes it is hard to trust and believe in something greater than ourselves. What process did you go through to surrender your will to God?

Deborah: I’m a member of the Church of Christ, and I try with the best of my abilities to do what is right in God sight. I fall short, but I do try hard. I learned a long time ago that there are some things I cannot change, no matter what I do. I knew that this disease was much bigger than Clyde and much bigger than me. I knew that I couldn’t change the situation that was laid out before the Slappey family, so Clyde and I just did what we knew: we prayed. And we prayed and prayed; asking God to give us the strength to deal with our family situation.

There were many times when my faith was shaken during Clyde’s ordeal, but God always strengthen me to keep on moving and holding on to His unchanging Hand. And he did. I knew that God was carrying me in those dark days when the physician would walk into the room and explain Clyde’s prognosis. Many times, I wanted to run away and hide, but I kept on praying because I knew that if it was God’s will to deliver Clyde from this nightmare, He would. I knew that God was in control and nothing would be added or taken away, unless He allowed it.

Sad and unfortunate things happened to all people and on November 12, 1994 (the onset of Clyde’s blackouts), it happened to the Slappey family. I don’t want anyone to ever have to experience the pain and suffering that we did with the amyloid disease, and this is why I’m so passionate and dedicated to educating the public about the devastating effects of this disease.

Irene: It was evident to you and your family that your husband would not recover from this disease. What process that you go through to accept this fact?

Deborah: On the contrary, we didn’t accept the fact that Clyde wouldn’t recover. I knew that as long as Clyde was alive, there was hope. My hope and prayer was that if it was God’s will to cure Clyde, he would, and that’s why we kept looking for someone to help Clyde, beginning in Columbus, Georgia and ending in Rochester, Minnesota. And thanks be to God, we made it to The Mayo Clinic, Clyde’s place of hope.

Clyde and the family didn’t dwell on the negative; we accentuated the positive and we took Clyde’s illness one day at a time, traveling around the country to embrace a cure for the disease. Our trust and faith was focused on God to see us through the storm. And he did. We made it to The Mayo Clinic.

Irene: It must have been a huge decision to make, to take the time to travel around the country. Tell us more about the process that you took on.

Deborah: Well, at first, we didn’t know that we would be traveling. After the prognosis at the local hospital, things just didn’t appear too well for Clyde. I knew that I needed to do something. I just didn’t feel that enough was being done; especially when we had so little information about the disease. So I looked up the disease in my encyclopedia and while Clyde was in the hospitals, I visited several medical libraries to learn more information about the disease.

It really didn’t take much thought to decide to travel. Clyde and I knew that we had a race against time. Based upon the physician’s prognosis, Clyde didn’t have but a year or so to live because of the aggressive nature of the primary amyloid disease. So, as we compiled information and learned of different hospitals, we decided to pursue whatever lead that we had to find someone to help him.

It was a desperation move I know that, but we knew we had no choice but to pursue every opportunity to find someone who would be able to help Clyde. And the most ironic thing: we did find someone to help Clyde with the disease, but the wait was too much for his weakened body. He died within two weeks of receiving a life-saving heart transplant at The Mayo Clinic.

Irene: Your husband was in coma for almost a week before he passed away. Tell us what you were able to do for yourself during this time, knowing that his time here was ending.

Deborah: I sat by Clyde’s side and I prayed and read scripture many days. I was determined that I would be close to Clyde. I asked God to give me strength through my tears of pain and sadness, but I kept praying, even until the end of Clyde’s life. I talked to our children about Clyde’s state and I told them that we were in the place of hope. I also told them that if it was God’s will to see Clyde through, then He would. And if it was not His will to do so, then He wouldn’t.

We all continued as a family to pray for Clyde. At Clyde’s bedside, I still knew that it was all in God’s hands. The night before he passed out for the final time, Clyde told me he felt okay. That’s why I titled the book, I Feel Okay.

Clyde’s story is so precious to me. I watched his faith strengthen to its highest degree, and I know it was well with his soul as he closed his eyes in sleep. I won’t ever forget that moment in the hospital room. And much of me remained in that hospital room as I said goodbye to my companion, my Innisfree, my life.

Irene: Once Clyde was gone, you had your own grief to go through. Would you please share with our audience what steps you took in your grieving process.

Deborah: I felt I needed to write the sequel to I Feel Okay, so I decided to talk about my grieving process in my next book. It should come out sometime in late 2006 or early 2007. While Clyde was alive, I was living on the hope that God would save him, if it was His will to do so. After Clyde passed, I began to concentrate on our children and myself. During Clyde’s illness, I hadn’t thought about me much. My main concern was to find someone to help him. Once he was gone, I concentrated on my children, hoping to help them come to terms with the loss of their father. I put myself last.

I struggled with the pain. I felt so alone without Clyde. I prayed to God for strength and comfort and I cried myself to sleep many nights, even days. In my new book, I talk about my lonely road of pain and agony of losing my best friend to death. And as I have done in I Feel Okay, I hope that other people will be encouraged by reading my story about grief and suffering.

Irene: Now with hindsight more evident, is there anything you think you should have done differently?

Deborah: After living with the death of Clyde for some 11 years now, I don’t think there is much that I could have changed. Clyde was able to receive care from the best physicians in the world at The Mayo Clinic. I did learn that other hospitals had amyloid research programs, such as Boston Medical and Indiana University. But again I know that Clyde was surrounded by the best physicians in the business.

I just would have loved to have found more information about the amyloid disease earlier in his diagnosis. Clyde was diagnosed with the amyloid disease in December 1994. I didn’t find the information from NORD (National Organization of Rare Disorders) until late January 1995. I believe that Clyde’s outcome would have been different if we had known about The Mayo Clinic in December 1994.

Irene: It took quite some time before you were able to put your story into writing. What was the tipping point for you that gave you the ability to go forward with telling your story?

Deborah: My desire was to tell Clyde’s story in 1995, but as I mentioned earlier, I didn’t have the strength to write a book, but I wrote “Primary Amyloidosis, A Personal Perspective,” in 1996. I even wrote a letter to Oprah Winfrey hoping that she would feature the rare disease during one of her talk show episodes. But I never heard from her, and this really broke my heart. I told Clyde’s story through the article on the internet to include website addresses of research hospitals and agencies about the disease.

In late 2003, I decided that I needed to put one foot in front of the other and to finally tell Clyde’s story to the world. I asked myself: how can I get people to listen to me about the devastating effects of this disease. And the answer that surfaced was to write Clyde’s story in I Feel Okay. Through a shower of tears, I finished writing the first draft of I Feel Okay in March 2004, and published it in September 2005.

Irene: You have a “bottom line” message in your book. Would you expand a little on it.

Deborah: It took me a while to tell Clyde story in I Feel Okay. But I knew that I needed to record his story to tell others about his life and the deadly disease that caused his death at only 43 years young. I want others to learn from Clyde’s story and his fight with primary amyloidosis (AL). I want others to never accept “no” for answer. I want people to educate themselves about the disease, whether it’s amyloidosis or perhaps another disease, and to never give up.

Clyde and I could have given up and stayed in our Columbus, Georgia home to let him die, but we didn’t. Clyde came out swinging, swinging for life, and I am so very proud of him. He never gave up. He fought primary amyloidosis until the very end. It’s my prayer that others in similar situations will never give up. Seek counsel, but keep fighting for which you believe.

Irene: Thank you for giving us insight on primary amyloidosis, a disease that most of us have never heard of. Is there anything else that you would like your readers to know about you or your book?

Deborah: Primary amyloidosis (AL) is a disease that can be slowed and or stopped if it’s diagnosed in time. It’s critical that the information is made available to people around the world. Primary amyloidosis (AL) doesn’t discriminate. The disease affects people of all ethic origins, colors, nationalities, and creeds. As I said earlier, I wrote Ms. Oprah Winfrey in 1996 and poured my heart out to her. I waited to hear from her, but I never did. I had hoped her celebrity status and assistance would help me to raise the awareness about the rare, deadly amyloid disease.

I didn’t perceive that people would embrace I Feel Okay as many have. I had only planned to write the facts about primary amyloidosis (AL) and then I would turn off my computer, and move on to other things. But somewhere in my writing of Clyde’s story, I surmised that the story was much bigger than I was, even much bigger than Clyde. So, over the past few months I have begun to speak to various groups – bible classes, book talks at work and colleges, and appear on numerous TV shows to talk about primary amyloidosis (AL). Clyde’s story has grown much bigger than me and it’s being passionately received. For this, I’m very thankful.

My mission now is to truly educate the world about the devastating effects of the disease. I’m now reaching out to our local, state, and even national public figures, hoping that they will also embrace and bring into the public arena the devastating effects of the primary amyloidosis disease.

My hope and prayer is that others will read Clyde’s story, our personal family tragedy, and will pass the information along to others. This, I feel, is the one way to ensure that Clyde’s story in I Feel Okay reaches epic proportion to people around the world.

Irene: Thank you so much for sharing your story. Is there anything else that you would like our reading audience to know about your or your book?

Deborah: Thank you so very much for reading I Feel Okay. I am deeply humbled and grateful for your reading this review and Clyde’s story, and for telling others about the primary amyloidosis (AL) disease. God bless you all.

Interview of Deborah Slappey Pitts, Author of "I Feel Okay"