|
“Please let me die. God, I just want to die.”
When the funeral home ‘suits’ came into the room where Kelly had passed, they were polite, but it seemed so ‘canned’ and callous. I suppose one gets used to the job. I told them I wanted to say ‘good bye’ before they left with Kelly. I followed them to their vehicle and leaned over to kiss her and tell her that I loved her. Her cheek was cold. My Kelly was gone... but finally pain-free. Death is the final form of pain management.
One-of-a-kind, Kelly, was diagnosed with Behcet's Disease in 1996. Her primary physician had referred her to a dermatologist to check on some sores on her left elbow. He asked if she had any other areas that were creating a problem. She indicated that she also had some mouth sores. He took a biopsy. When the results came back he said he thought it might be Behcet’s. He somewhat described the disease and it sounded like it was something we could handle. He suggested we go to the Medical University of South Carolina in Charleston, South Carolina (MUSC). MUSC confirmed the diagnosis, and then added the diagnosis of fibromyalgia.
In 1996, she was also told she had vasculitis. Then in 1997, she was told that she was now diabetic because of her use of prednisone. Prednisone had been prescribed to reduce inflammation and help with her pain. Prednisone also caused her to retain fluids and her face, neck and stomach bloated up, making her very uncomfortable. It also caused her bones to become very brittle, and even a small shift in her weight could result in bones breaking.
She was in a downhill spiral. We could feel it happening but kept hoping to find a way to stop it. We thought if we could just find a way to get her in remission. We felt like we were alone in this quest.
A co-worker of mine said she had heard about radon treatments on a TV program. We checked into it and flew to Montana. Forty-two hours of breathing radon. We didn’t think much had happened, but realized after we returned that her mouth and elbow sores were gone. Also, her white blood count had gone down at the next blood test. The doctor was thrilled, but we didn’t tell him what we had done. Unfortunately, we were financially unable to go back for additional treatments. We both felt that if we could get her back two or three times a year, we could get a handle on her diseases.
Many treatments were tried. She had been on thalidomide, interferon and methotrexate, among others. Kelly always needed two or three times the dosage that worked for others. Most doctors were too conservative for her. They wanted to start low and work up to higher levels. Most of what was tried bothered her stomach anyway and she had to stop taking them.
I felt so helpless. It’s so hard to see someone you love in pain and not be able to do anything about it.
One of the many times I sat down at the computer to do some research in hope of finding an answer, I discovered a clinic in Montserrat, West Indies, which was doing stem cell research. They wanted $10,000 in advance, plus travel expenses. We couldn’t afford it. With further research, I couldn’t find anyone in Montserrat who had heard of the clinic.
There just didn't seem to be an answer. It was very frustrating. We just had to deal with the hand we were dealt.
I must admit that I regret the times when I got impatient with Kelly because of her constant needs. She would need ice for her back, then heat. She was too hot or too cold. Her mouth was dry and she needed something to drink. She needed to go to the bathroom or have her back rubbed. Please don’t misunderstand me, these were real needs.
She smoked and would fall asleep. She burned holes in her chair and blankets. It was lucky she didn’t burn the place down. She said it helped her to smoke. Toward the end, I would need to light them for her. I got so frustrated once that I told her that I didn’t think a person should smoke if they couldn’t light their own cigarettes. However, having smoked since she was sixteen, I'm sure it was a comfort to her, and I saw no benefit, physical or emotional, in insisting she quit.
Kelly had been in and out of the emergency room and the hospital a couple of times when the pain became unmanageable. I needed help with her. I needed help for myself. A friend was a hospice nurse and she said I should call their executive director. Several days later, I asked Agape Hospice to come to see if they could be of help to us. I can’t tell you how helpful they were. Looking back, I should have called them to come in much sooner. I could do the cooking and laundry and enough of the house cleaning to get by and take care of Kelly’s physical needs, but the medical/meds side was too much. Our Agape Hospice nurse, Michelle, was a godsend. She coordinated with the doctor and the pharmacy and made sure that we got what was needed, when we needed it. The emotional support was of tremendous help.
I would like to tell you that Kelly and I sat down and discussed the ins and outs of a body donation, but, sadly, that is not the case. First, I didn’t believe that her passing was imminent. Secondly, she didn’t like to talk about death. She did tell her sister that she would like to help others somehow. We didn’t make the decision to make a body donation together. I made that decision alone a few days prior to her passing. I’ll be very honest here – I had very mixed emotions about it. We were basically living on Social Security and Disability. We had not saved because we couldn’t. We didn’t have any life insurance. A normal funeral and burial would have meant that I would need to borrow money from someone or try to make arrangements with the funeral home. I also felt that somehow something good had to come out of all this pain and suffering. So, I “Googled” “Behcet’s Disease” and found the American Behcet’s Disease Association. I noticed the name of Sheryl Burke, Medical Liaison, and emailed her. I was looking to see if any research was being done regarding Behcet’s. It turned out that the only research being done was with patients (meaning someone who was alive and suffering). No research was being done with bodies (cadavers), at least as far as anyone knew. Sheryl indicated that she would help me find an organization who did such research for me even though she is suffering from Behcet’s Disease herself. . I told her that it wouldn’t be long before we lost Kelly, and I needed to make a decision very soon.
Sheryl contacted an organization called MedCure with regard to accepting the body of someone with Behcet’s Disease and they felt like it would be very beneficial for research. After carefully looking over their website (Medcure.org) and talking to a representative, I made the decision to donate her body for research. I signed the documents and faxed them at 11:40 AM, June 24th, the day Kelly died.
The body was picked up in Murrells Inlet, South Carolina and was in MedCure’s facilities in Portland, Oregon the next day. On July 1st, I received a letter from MedCure indicating that, “Your wife’s gift to the medical community is complete.” Her cremains arrived on Saturday, July 12th and I wasn’t home to sign for them. I picked her cremains up on Monday. It was a very strange feeling taking that box out to the car and heading home. A lot of thoughts went through my head. When I got home, I wasn’t sure if wanted to open the box but decided that I did. Inside was another box. Once again, I wasn’t sure if I wanted to open it. When I did, I discovered the most beautiful heart-shaped box that you can imagine. I couldn’t have picked out a more appropriate container for Kelly’s cremains.
I’ve been told that I’m so courageous to have donated her body for research. I don’t feel that way. It doesn’t take courage. Let’s be real. Help is needed to find a cure for Behcet’s Disease and other autoimmune diseases. I don’t want others to suffer the way Kelly did.
I looked around and realized that we had a lot of stuff that I needed to dispose of somehow. The big, over-stuffed chair where she spent her remaining years had to go. I felt like I was throwing out a part of her, but it had to be done. She had a large collection of Boyd’s Bears that had half an inch of dust on them because they hadn’t been dusted since she felt up to doing it. I carefully dusted them off and packed them up so I could decide later what to do with them. She had a lot of shoes that I don’t even know when or where she got. A friend was going to Zambia, Africa on a Christian mission and said they were needed there. I told her she could take them, on one condition: that she had to take photographs of them being worn so I could see how they benefited others.
How am I doing? It’s hard. I can’t believe Kelly’s gone. It seems like a cruel joke. She must just be visiting someone and will return. But I know better. I can handle it better when I realize that her body will be helping medical research.
Just who was Kelly DeAnne Fryer? She owned her own dance studio in Johnson City, Tennessee at the age of 14. She was the head majorette at Science Hill High School. She bred, groomed, trained and showed Cairn Terriers to their championships. She was a great real estate salesperson. She was a great wife, mother, sister, aunt, cousin, and grandmother. She was a great friend.
Our 22 years together went by so quickly. We had great times and loved to work together. That’s a rare quality.
|
|
|
|
Kelly showing Chris at the
Myrtle Beach, SC Dog Show
|
Beautiful rice paper urn with
embedded pressed flowers.
|
The best way to give you a picture of who Kelly was may be through others.
In a letter dated July 17, 1997, Dr. Wendy Lee, MD (Rheumatology) says,
“Ms. Kelly Fryer is an unfortunate 53-year-old white woman who developed Behcet’s Disease; in addition to cutaneous vasculitis, fibromyalgia, and most recently Prednisone-induced osteoporosis. She is a small woman but with excessive body weight due to chronic Prednisone use.”
In a card to Kelly, her son, Todd Shipley wrote, “Dear Mom, I know things have been real rough lately. But I want you to know that I love you. I want you to know that I will always remember the times we spent together when I was a young boy just sitting around talking about various things in life. You were always there for me. You are a wonderful mother and friend. Thank you for raising me the right way. You taught me love, respect and how to act right. I will always remember these things. Happy Mother's Day and Happy Birthday. Love, Todd.”
Samantha Ray, her daughter said, “What can you say about your mom in only a few short sentences? As a child, my happiness was wrapped in her presence. I remember fondly, the “road trips” in the Winnebago to visit my grandparents or to travel to dog shows. I remember our dogs, she loved them so much, and the puppies they brought every year or so. She let me play with them when they were old enough. I would delightfully lie on the floor so the litter of puppies could lick my face and run all over my body. I remember going to the beach in her blue Gremlin, sometimes just the two of us. Every afternoon, we’d watch Luke and Laura on our favorite soap opera, General Hospital. One time, she and I drove to SC to see her parents and stopped at every Stucky’s Gas Station along the way in search of a turtle. I remember our last trip to the orthodontist (there were many) when my braces were removed and flashing my new smile to my mom. These are the sweet and easy memories that make me smile. I also remember when she told me she was sick some 12 years ago. For many years she was positive and thought she would get better. She had good days and bad -- sometimes I wonder if the medicine she used did more harm than good. Many had terrible side-effects … made her bones brittle and terrible withdrawal symptoms when she tried to reduce the dosage. In the end, she was no longer optimistic and was ready to go. The pain was too great. While I am sad my mom is gone and her grandchildren are sad “Nana” is gone, we are grateful that she is no longer in pain.”
Kem Berry, her sister said, “She was my ‘JeJe’ – my big sister who always looked out for me. She was every bit as much a mother as a sister to me. She was the only person I could call up at 2:00 a.m. and know that she was there to listen. She taught me to tie my shoes, to shuffle and cartwheel and ‘grande plie’, and to stand up for myself when no one else would. JeJe, I miss you like I never thought imaginable, and I’m so happy that you don’t hurt anymore, and that you are with Mom and Dad and Eddie now. God has blessed us all.”
Joe Moore, her brother said, “Kelly was my big sister but she was so much more than that. Being the eldest of three children, Kelly had wisdom that only life experience brings. She was both counselor and confidante to me and she will be surely missed. Behcet’s Disease is still unheard of by so many people and unfortunately, so are the deaths of those who suffer from it. Research to find a cure cannot be done unless the victims of this disease and their families do everything in their power to help. This means donate your body to research as Kelly has done. For the love of Kelly, let’s find a cure.”
Margie Dunlap, her cousin, said, “As a cousin, we grew up together and were always best friends. We did things together when we were raising our families and she was always someone I could count on in times of need. Even though miles separated us, we still remained "telephone pals" and would talk for hours sometimes when she was able and felt like it. We shared many good times together and I miss her.”
Patty Blaser, her friend, said, “The most vivid memories of Kelly are always full of laughter. She and I always called ourselves Lucy & Ethel, no matter what mundane thing we did together we always found humor in something or someone. Our trip from Florida to Pennsylvania to attend the Cairn Terrier Specialty Dog Show, was one long series of mishaps, turned into hilarious memories. From learning how to empty the septic tank on the Winnebago, to pulling away from home with our husbands waving goodbye only to realize we forgot the dog! Lucky for us we were only two blocks from home.
I will always be grateful for my friendship with Kelly, but never more so than when my husband was dying. We all knew his time was near, even though he was never officially told this, I believe he knew. The last two weeks he was alive he wouldn't sleep. I was with him all day and into the evening. Kelly would come over (we lived next door to each other) around 11 PM and sit up with him all night so I could rest. She would then go home around 6 AM, get the kids off to school then grab a few hours sleep. She was my rock through that ordeal. She was my best friend. I loved her. I miss her.”
Bobbie Elmore, her friend, said, “I met Kel and George in 1997 when I moved across the street from them. She was a special person to me and I grew to love her very much. She and I would talk for hours on end. She was beginning to get sick and I would be there as much as possible to help. When she felt like it, she would come over and we would sit on the deck and drink sweet tea and enjoy the warm weather. She always brought her own tea. Even though Kel was going through a difficult time, she always seemed the same every time I saw her. Sometimes I would need to pick up meds for her, if she was not up to it and George wasn’t available. I would cook food and take it over to them. Sometimes she and I would run errands for her dad, Papa Kyle. Kel loved their flower garden and loved to look out and watch the birds at a feeder George placed close to the window just for her.
I was with Kel holding her hand the day she passed away. Just before she died, she opened her eyes and saw me. She knew I was there. I will always love Kel and remember her as my ‘special friend.’
Irv and Suzette Heider, fellow Cairn Terrier breeders said, “It's always a shock to hear of the death of a cherished friend and Kelly was just that, a cherished friend for many years. Kelly organized the Central Florida Cairn Terrier Club many years ago and was our first President. Many meetings and events were held at her home. I was the proud owner of some of her Cairn blood lines and went on to exhibit them and claim to fame many champions.”
Andrea Ellwood, a friend, said that Kelly had the ‘spirit of a Cairn Terrier and the gentleness of the Angora rabbit.’
There is a moral to this story. If you or a loved one is admitted to the hospital, please go to the social worker assigned to your floor and see what they can do for you or suggest that you might do. That is why they are there. Use their help.
Hospital social workers can direct you to in-home care help. They can give you information about possible therapy available in a nursing home facility. They can tell you about hospice. Most of these services are available at no cost – at least for a specified period of time.
As a caregiver, don’t push yourself to the point that you are mentally and physically exhausted, and are no longer a positive influence. Don’t be a hero. There are teams of support for you. You just need to ask.
My last thought is, please talk to your loved ones and discuss helping to solve these dreadful autoimmune diseases, particularly Behcet’s Disease. Talk about donating your body or your loved one’s to an organization like MedCure that is dedicated to doing research to cure these diseases.
Be of help so others won’t need to suffer. It’s the only thing to do.
|
