Life with Arthur

The Last Lecture

2009-02-09T00:44:00.007-05:00

I admit it. I am one of the billions of viewers who have watched Professor Randy Pausch’s "The Last Lecture" on You -Tube. Not that I am an avid You –Tube fan, in fact, I vilify those people that consume their waking hours watching unknowns in these implausible videos.

But something struck me when I heard about this Carnegie-Mellon University computer science professor , who upon receiving the devastating news that he has terminal cancer provided a last lecture for all in his university’s community. I have watched and re-watched this video many times; I even purchased his book based on the lecture and read it.

Living with Rheumatoid Arthritis and sharing the profession of teaching, I felt akin with Professor Pausch. His love for life, his family, and passing on knowledge to young people was at the heart of his message and his life. Life is so ironic; as I watched his lecture, I pondered how only when we begin to die do we really learn how to live.

In my moments of solitude, I pray for strength to continue teaching through the throbbing hip pain and the difficulty of living with leg length discrepancy due to my latest hip surgery. After all, I am alive. I may have been convicted to a life sentence without parole, but I will live to see tomorrow. Whether I choose to see it through a bright sunny lens or one of dark despair is up to me. I firmly believe, in the words of Dr. Pausch, to live life like Tigger, never like Eeyore. There is so much of God’s grandeur in everything and everyone; we just need to be open to see it.

As I edit my thoughts today, I learned of Dr. Pausch’s death. My hearts go out to his wife Jai, and his three young children. May they grow up knowing they are the product of love and of an amazing man- one whom shared very little time with us, yet left behind the ultimate lesson for humanity.

Rest in peace, Dr. Randy Pausch. “ May flights of angels take thee to thy rest.”

This post was written months ago when Professor Pausch passed away.

To watch Dr. Pausch's last lecture: www.youtube.com/watch?v=ji5_MqicxSo

This I believe.....

2009-02-09T00:20:00.001-05:00

This I believe….

My list of 25 things will be in the style of NPR’s “This I Believe” series began by Edward R. Murrow in 1952. I could write an essay on each of these beliefs; but for the sake of brevity,I will limit myself to a sentence or two.

1. I believe in God, His only son Jesus, and the Virgin Mary.
2. I believe I found my soul mate in Eddie. He makes me feel that all things are possible and that we are boundless.
3. I believe in love and the sanctity of marriage- only by sharing your life with someone can we truly be fulfilled.
4. I believe in the magic of motherhood because of the incredible gift of Nikki in my life. She has filled my days with so much happiness that mere words simply can not express.
5. I believe in the unconditional love of dogs and that beagles are the cutest breed. I also believe that one day I will see Archie, Penny, Rudy, and Shelby at the Rainbow Bridge in heaven.
6. I believe that "beer and wine" are a necessary food group.
7. I believe in the power of the printed word.
8. I believe in the therapeutic power of water.
9. I believe that living with physical pain makes you a better, more empathetic person to your fellow man.
10. I believe that living with metal (bionic) parts makes you feel more robotic and less human, only if you allow it to.
11. I believe that Broadway music can cure all troubles and bring anyone back to life.
12. I believe that music, poetry, film, literature and any art form soothes the soul and allows transcendence.
13. I believe in the miracle of medical science and the healing power of prayer.
14. I believe that surrounding yourself with “pretty things” will always make you feel at home- that your home should be your sanctuary from the world.
15. I believe people are infinitely good at heart. I have seen and felt the goodness of so many people in my lifetime that has strengthened this belief.
16. I believe that Christmas is the most magical time of the year.
17. I believe that Walt Disney World is the most magical place in the world.
18. I believe that one day I will be able to witness the Lord’s grandeur in the Grand Canyon.
19. I believe that one day I will travel our vast and wonderful country via an RV- visiting each state, meeting amazing people, and sharing all this beauty with Eddie.
20. I believe that one day I will be able to ski (they have handicap skiing) the mountains of Utah and Colorado.
21. I believe that one day I will write a book and it will be published.
22. I believe in the power of the human spirit to overcome adversity.
23. I believe in keeping service at the forefront of your life- that only by losing yourself in the service of others can you truly find yourself.
24. I believe in the healing power of laughter. A good belly laugh can cure all ills and see you through another day.
25. I believe in the power of the word ….HOPE. (It has always been my favorite word.)

The Role of the Caregiver

2009-02-09T00:03:00.004-05:00

On Tuesday, December 2nd, I delivered the following speech at the Faces of Arthritis Breakfast in Atlanta, GA. This is a yearly event held by the Arthritis Foundation-Georgia Chapter in order to raise funds and awareness. Although I had agreed to speak months earlier, my father's health took a turn for the worst and he died days before I was scheduled to speak. I kept my commitment to the Foundation and dedicated this speech to the ultimate caregiver- my father.

Nine days ago my father passed away after a long battle with Alzheimer’s and as I sat by his bedside, my thoughts turned to all those moments in my life when he was my caregiver. Not just his role as the dutiful parent, but my main caregiver when I was stricken with JRA at 13 years-old.
You see, my father was the one who drove me to and from doctor appointments, reminded me to take my medicines and even was my therapist. For two long years, my after-school activity consisted of sitting in a chair watching “General Hospital”, wearing a neck brace that was tied to a thick rope and on the other side of the door was a bag filled with gallons of water. My father had to place me in “traction” EVERY SINGLE DAY- although it was very difficult for him to see me in such pain. I remember begging him, “Not today, let me have a day-off,” but he never gave in. He knew that although it hurt me, in the long run it would be beneficial for me.
As I sat there by his side those long days before he died, I thought of the important role of caregivers.
Since Arthritis is a disease of mobility, the role of the caregiver is essential. There are 46 million Americans diagnosed with arthritis, and for each one there are at least one, perhaps two caregivers. The role of the caregiver is important no matter what age we are diagnosed with arthritis. The role takes on various forms throughout the life-span of a person with arthritis.

It is the parent of an arthritic child who wakes up earlier than usual to prepare a warm bath, so their child can move his/her joints before heading off to school. It is the parent of an arthritic who has to prepare a good breakfast because their child will need to take morning medicines. The strength of a parent who cries in the shower alone, but puts on a brave face in front of their child as they prepare their Enbrel injection.
It is the boyfriend/girlfriend of an arthritic who learns to hold their hands differently because crossing their fingers is way too painful.
It is the spouse of an arthritic who quietly helps his loved one dress, put on their shoes, and get ready to face the world everyday while no one else has any idea of what it may have taken to get this person out the door.
It is the spouse that waits patiently after the surgical doors close, leaving them alone with their thoughts and prayers as their loved one undergoes yet another surgery.
It is the child of an arthritic who grows up all too soon by having to take care of their parent- reversing the traditional caretaker roles. These children, who mature way before their time, learn to take on a myriad of adult- type responsibilities.
I intimately know each of these caregiver roles because my husband and daughter have continued the legacy my father began. Throughout the years, my arthritis has destroyed BOTH my hips, my right shoulder, and both jaws. Thus, I have had to undergo six joint replacements. To have a part of your body removed and replaced by metal makes you feel less human and more robotic only if you allow it to, for though it is quite painful; it quickly puts life into perceptive.
After each surgery I felt as though I had been robbed of my entire God given abilities as a human being. I could not move without aide. When I began to walk, I could not simply get up and move. I remember giving my legs the command to move and they stood as still as Roman pillars on an archaic building. With time as my muscles came back to me, I began to move my legs and soon I was walking ever so slowly again. Through the weeks of therapy I progressed from a walker a cane to walking on my own. I feel as autonomous as a toddler taking her first steps. However, with this new found independence also came a great deal of inner wisdom. For the little every day movements became small victories as I acquired them.I began to realize what truly matters in life are the people around you, the support system that stays behind when the surgical doors are shut on them. Once they are reunited with you, they search for ways of helping you deal with your pain and inability to move. This support system, the caregivers, whether it is comprised of one or many, is the essence of recovery. I got up and walked because my husband or daughter was on the other side of the room to surround my body with their arms. It was this one hug that made all the suffering worth it. It was their mere presence day after day that made me realize that although I have one more piece of metal inside my body, I am still the same person with the same hopes and aspirations.

The essential role of caregiver also extends beyond the family to the medical community who works by assuring that quality of life is better for all those living with arthritis. It includes all those wonderful people who work tirelessly for the Arthritis Foundation by raising research dollars, planning programs, and assisting families in need of pertinent information.
On behalf of the 46 million people with arthritis and those gathered here today, I want to thank all the caregivers of various capacities in this room. Without you, we would be lost. Our daily tasks would be insurmountable and our life would never be as complete.

Although my father is gone, he left me with wonderful memories and a legacy to help others in need. This example of service to others is what lies at the core of the Arthritis Foundation’s mission statement. Let us never lose hope that one day arthritis will be conquered, but in the meantime, let us continue to fight the good fight and care for everyone around us.
Thank you.

Small Victories

2007-12-11T11:04:00.001-05:00

I have never won an Olympic medal or any type of sporting event, yet I know the taste of victory- one that brings a smile to your face and pride in your heart. Call it a small victory, but a victory, nonetheless. This past Thanksgiving I was able to partake in an old holiday tradition-Black Friday or Day after Thanksgiving Sales. After a two day cooking spree, my sister-in- law and I headed to the Outlet Mall before midnight. Although some may think this is crazy, it was simply exhilarating to me. It was not the opportunity to save money on holiday gifts, but a feeling of wholeness. I no longer felt broken, but repaired.

Just five months to the day of my third total hip replacement, I was walking in the middle of a very cold evening all around an outdoor mall. We shopped from midnight to 6 am the following morning. I was able to walk, stand in line, and browse around like everyone else. This may sound trite to many, but to me it was a sign of victory and defeat over Arthur. After a very hot summer filled with pain, injury, and surgery, the cold air felt invigorating against my face. Winter is symbolically a time of death, but for me this winter is a time of rebirth as I feel completely healed from the surgery.

For this holiday season, I promised myself to give a little more than usual to every Salvation Army greeter outside a store that I encounter and any toy drive that I am asked. In doing so, I am silently paying it forward to all those who so lovingly cared for me this year. Christmas is a special time of giving and gratefulness, what better way to express my gratitude than to be a part of someone else's joy.

Understanding what you cannot see

2007-09-30T21:39:00.003-04:00

There is an old adage that says” Don’t judge a book by its cover.” Living with a chronic illness makes those words ring true. If you were to see me, your first reaction would be to think that I am the very picture of health. On a particularly bad day, I may limp when I walk. Little do people know that I limp because my artificial hips are throbbing pain down my legs probably from overuse. Some days this overuse consists of something as simple as walking across a parking lot.

The times in my life that I have been in a wheelchair, on a walker or a cane, the amount of stares that I receive is amazing. When I was younger, it would truly bother me to my inner core. Through the years, I’ve simply realized that people do not understand what they cannot see. Living with a chronic illness and not displaying any physical symptoms is very stressful for both the patient and the caregivers. We may not overtly “ look" sick, yet no one can see or for that matter feel the pain inside. Our own physicians have to rely on patient information. There are the very obvious times when my joints have been red and swollen, or when my hip has dislocated from the rest of my body. On those occasions the physical symptoms are blatantly clear, but that is not I what I am referring to. I mean the day in and day out “pain” of arthritis. The kind that will chew you up and spit you out-if you allow it. The pain felt inside your joints that makes everyday minute movements almost impossible. The type of pain I am referring to is felt but cannot be seen.

Living with a chronic illness is a state of inner dichotomy. On the one hand, I am blessed to look so healthy, but on the other, I feel desolate when others cannot understand my inability to move. I am expected to act as I appear. When my hand or leg is bandaged to protect the joint from more damage, I am constantly asked, “What happened?” Inside I feel compelled to tell a great story to explain my injury. But there is no explanation other than it is my arthritis flaring. As a child, I made up amazing stories to protect both my joints and my inner psyche. Today, I simply smile and say, “ Oh, it is my arthritis acting up.” As the words leave my lips, I notice the reaction, and realize that people simply cannot understand what they cannot see.

I am broken ; I am not sick

2007-06-25T19:17:00.001-04:00

It has been two weeks since my right total hip revision surgery. The worst is over; now it is time for healing and strengthening my right leg. After all, I am broken but not sick. These simple words were spoken by my orthopedic surgeon the day after the surgery. I had asked him if could get out of bed and sit in a chair and he responded yes, followed by those profound words. As I looked up at him, I thought, " he gets me". He understands my need to quickly heal and my desire to have everything back to normal, but it does not happen overnight. There is no magic in hip replacement surgery. This is a long and slow recovery. Revision surgery seems even more difficult than an original replacement.

The surgery itself went well; after all I was asleep. When I awoke in the recovery room, I ached all over and just moaned myself back to sleep. Once in my hospital room, I was able to see my husband again. It is always an internal emotional reunion for the both of us because there are always certain risks in any major surgical procedure. With any type of replacement surgery, the first few days are simply pure hell. You feel so helpless because aid is needed in order to accomplish the simplest tasks.

I was discharged from the hospital two days after surgery. In hindsight, it was way too soon. With the other two hip replacements, I was hospitalized at least four days. But I can not blame the insurance company or the hospital. It was all my doing. I wanted out so badly I willed myself to get up and walk the hospital hallways in order to come home. It was a deal I made with the doctor. Although it was a Dorian Gray deal because once I came home, I realized how difficult it was to get by without professional nursing care. My wound has not healed well and continues to drain as I write this. My poor husband has gained his R.N. degree by taking constant care of me and dressing my wound up to five or six times a day.

I long for the days of walking with out a limp and the ability to move freely without pain. Since I have been down this road before I know that day will come. I need to be patient and enjoy my time reading and relaxing.

Although this was not my plan for how I was going to spend my summer vacation. It is the Lord's will and I must accept it and move forward. The summer will come to a close and so will the pain. In my heart I know that the fall season with its glorious routine will return. As the leaves turn color and nature displays it true beauty so will I. For now, I sit and wait because healing takes time. "Brokenness" is a state of being and healing occurs long after the memory fades.

Here we go again......another hip replacement surgery

2007-06-22T00:25:00.002-04:00

My right hip dislocated a few weeks ago while we were at the Georgia Wine festival at The Three Sister's Winery in Dahlonega. It was an overcast and humid day, both my hips were hurting and I really had no desire to go anywhere. I knew it was going to rain and I was feeling miserable, but my old friends from Miami were in town. They have a vacation home in Jasper and called earlier that morning inviting us to the wine festival. I did not want to be a party pooper so I went along. I figured some wine might be just the medicine I needed.

When we arrived, I saw all the wine vendors under the white tents and thought this should prove to be a fun afternoon. I walked around with Eddie holding on to his hand because the ground was, of course, very uneven. We were in the North Georgia Mountains, after all. We spoke to some wine makers and I pretended to be interested in their product. All the while, I really wanted to sit or lay down somewhere. After some small talk and some wine sips, I saw a set of stone steps and went off by myself to sit down. All I could think about was I needed to get off my feet.

After lunch, I was finally honest with my friends and myself. I had to go home. No amount of wine in the world could make me feel better; it was just an achy arthritis day. I was no longer pretending to smile; I had had enough and needed to lie down. I went and sat in the backseat of their car. While I was sitting in the car waiting for the group, I reached over to pick up something on the floorboard of the car and POP!

I immediately screamed and I knew deep in my heart, here we go again. I had dislocated my left hip four years ago in my bathroom while attempting to remove the polish off my toes. Since then I have been able to avoid this horrible predicament by routinely getting professional pedicures.

Anyway I soon as I screamed, Eddie was by my side, Later he confessed that once he heard the scream; he also knew in his heart that it had dislocated. As everyone ran towards the car and among all the commotion, I remember a woman I’ve never seen before praying over me. I looked at her and she had her eyes closed, as she was deep in prayer. I will always be grateful for that moment and the kindness of strangers.

My friends drove me home and I was frantic because that was the worst pain I've EVER been in. The same winding country roads that I had fallen in love with upon moving to Georgia were now a source of incessant throbbing pain. As my body moved one way with the natural flow of the car, my dislocated leg went the other way. Eddie found a pillow in the car and lodged it between the car door and my dislocated leg. That seemed to aleve the pain and helped with the twists and turns. He also held me as I cried and my breathing became very labored.

When we arrived home Eddie called the rescue department. They arrived about fifteen minutes later, but they could not get me out of the backseat. They were two EMTs that did not know what they were doing. As I screamed they asked me, " well, ma'am what would like us to do?" They advised us to drive to the nearest emergency room hospital.

My dear friend Miriam and Eddie piled back into the car. While driving Miriam was so nervous and worried for me. It broke my heart to be the cause of worry in others. This was her vacation and she left her family to drive me to the hospital- after all, I was stuck in her car.

When we arrived at Northside Hospital, their ER medical team was simply amazing. After being stuck in that car for two hours with my leg not attached to the rest of me; I was ready to pass out. Within 15 minutes, I was on a stretcher with an IV line of narcotics to ease the pain. After they took X-rays; they sedated me and managed to pop my hip back in place. I was sent home later that night with a walker.

The following Tuesday afternoon I had an emergency appointment with an Orthopedic Surgeon. He confirmed what I feared. I need hip revision surgery as soon as possible because the hip may dislocate again at anytime. The plastic lining that is between my ball and socket is completely gone so I am basically metal against metal. Since it is such a smooth surface, it may dislocate very easily.

Tomorrow morning I will undergo a total hip revision surgery. Although it will be my ninth surgery, it feels as if it will be a new experience-a new doctor and a new hospital in a new city that so far has welcomed us with open arms. I may miss the familiarity of my medical history in South Florida, but I know that the same Lord who has guided all my past doctors will be in the operating room with my new doctor and me. My faith and hope remain the same no matter what city I reside in.

June 21, 2007
Dawsonville, Georgia

Coming “Home” After a Hip Replacement

2007-01-17T16:52:00.000-05:00

Writers capture universal emotions into words. Critics say the great writers of our time live on through their empowering words. When I think of the famous line, “you can never go home again “by Tennessee Williams. I tend to disagree with Mr. Williams for I have just come back home again after a long absence. I do not mean “home” as in the place where I reside, for I have not gone anywhere literally speaking. I refer to “home” as my entire being, the body my inner spirit resides in. In the last few weeks, I have undergone a very difficult total hip replacement surgery. The days that followed I felt as if my spirit had left my body and all that remained was the hollow skeleton alongside the cold metal parts.

Years ago I read somewhere that when one joins the military, you give up all your God given rights and then you earn them back, one by one. Going through joint replacement surgery is very similar, for everyday progress is made very slowly and independence is gained only through hard work. At first even the simplest movement requires immense effort. Daily activities such as bathing, dressing, and getting in and out of bed are impossible without aide. Once muscles remember what movement was like; they slowly come back. Gaining these upper thigh muscles and being able to move with ease comes only after weeks of sweat and perseverance.

To have a part of your body removed and replaced by metal makes you feel less human and more robotic only if you allow it to. For though it is quite painful, it quickly puts life into perceptive. After surgery I felt as though I had been robbed of my entire God given abilities as a human being. I could not move without aide. When I began to walk, I could not simply get up and move. I remember giving my legs the command to move and they stood as still as Roman pillars on an archaic building. With time as my muscles came back to me, I began to move my legs and soon I was walking ever so slowly again. Through the weeks of therapy I progressed from a walker to a cane to walking on my own. I feel as autonomous as a toddler taking her first steps. However, with this newfound independence also came a great deal of inner wisdom. For the little every day movements became small victories as I acquired them.

I began to realize what truly matters in life are the people around you, the support system that stays behind when the surgical doors are shut on them. They are felt alone for hours with only their prayers to comfort them. Once they are reunited with you, they search for ways of helping you deal with your pain and inability to move. This support system, whether it is comprised of one or many, is the essence of recovery. I got up and walked because my husband or daughter was on the other side of the room to surround my body with their arms. It was this one hug that made all the suffering worth it. It was their mere presence day after day that made me realize that although I have one more piece of metal inside my body, I am still the same person with the same hopes and aspirations.

This surgery took me away from my physical “home” because it robbed me of my ability to move; however, it gave me the ability to love life all the more. It gave me the gift of never ever dancing again without first looking up and thanking God. It made me realize that I can never push away my most prized possession, my family, for they are a molded part of my inner core just as the metal hip is. And most of all, it made me realize that I can come back ‘home” again and again because just when you think you’ve left, you realize that you are right where you belong.

Aimee Ferrer Busquet
01-14-01

Letter to Arthur

2007-01-17T15:55:00.001-05:00

Dear Arthur,

I guess I should address you as such, for that was the name I’ve called you ever since you invaded my body many years ago. You should know that this letter has been 25 years in the making. For that was when I was told I had you. I was thirteen years old, a young girl just starting to find her place in this world.

With the news, came the relief that everything I had been feeling had a name; Juvenile Rheumatoid Arthritis. I remember feeling shocked how could I have an old person’s disease? There must be some mistake.

Unfortunately, I soon discovered there was no mistake. You were here to stay and I had to learn to deal with your presence in my life. After the initial onset, where you first reared your ugly head and made me lose over two months of my eighth grade school year, I thought that this was no big deal. I certainly didn’t want anyone to know. After all I thought, “What was there to tell, so I take a many aspirins everyday and this doctor injects my fingers regularly?”

In high school you reappeared many times and there were many episodes of days with unexplained high fevers and fatigue followed by daily afternoon low-grade fevers. There was the constant smell of Ben-Gay, my perfume, I used to call it. There were the two years that my after-school activity consisted of my father putting me in traction for an hour everyday. I remember watching the soap opera General Hospital and just allowing the tears to roll down my face until they bounced off my cheeks. There were also the many years of going to the library when all the other girls went to P.E. classes. Here I discovered a world that had a profound effect on me. I submerged myself in words and was fascinated by the profound power they had over me. In the literature, I discovered new worlds, befriended famous literary characters, and lived a wide variety of emotions vicariously through these new friends. In addition, I learned the Dewey Decimal System and to this day still feel most comfortable when surrounded by books. Thanks to you, I found my profession and calling in life.

During my college years, I felt the anti-inflammatory medicine I was taking daily must have sent you on a trip somewhere. You tended to pop up only once in a while and I was so glad to be rid of you, even only for a while. However, you always managed to make a repeat visit after a night of dancing, after a long walk, or an all-day shopping spree. You always reminded me that you were still around especially when I tried to take notes for my lecture courses and my fingers would remain in the same position for a while. Nonetheless, while you continued to peek in and out of my daily young adult life, I managed to graduate, get married, and continue to “live” a normal life.

There are so many things I want to tell you, Arthur. There are so many raw emotions that lie just beneath the surface of my being. Sometimes I’ll hear a song, or watch a movie, or read a poem and I’ll cry uncontrollably. Many times these tears are only a residue of what you leave behind. I must say I really detest you…hate you…and wish I never met you. But more than anything, I resent you for all that you’ve taken away from me. You’ve decided that I can only experience the magic of motherhood once, for a second try would be disastrous. Throughout the years, you have destroyed my hips, my right shoulder, and both jaws.

Well, Arthur, I am writing to tell you that I will not allow you to take anything more from me. I will fight you till the end. I will continue to live my life as if you were not here. You will no longer watch the people that I love suffer because they feel powerless at your hands. You will not have such control over my family and me. After all you are only powerful when we allow you to overcome us. That will not happen. I will live a normal life in spite of you. I will continue to pass the many lessons of living that you have taught me to all whom I meet, especially the children you try to invade. After all I am a better person because of you. You have given me tremendous inner strength and fortitude. You have provided me with the empathy to understand a stranger’s pain and suffering. You have given me the gift of appreciating every dance, every long walk, and every adventurous event in which I can actively participate in and enjoy. I have learned to live around my “bad days” and cherish my good ones. The most important lesson you’ve taught me is to never ever take anything for granted. I have learned so much from you and yet, I realize there are many lessons in my future. But today I am alive and I will “live” life to the fullest, even if you continue to lurk around.

So long for now,
Aimee