What comes to mind when you think of the word choices? Perhaps it’s a meal or a partner or a job. For me it means choosing to live. Others will only think of the word choices when they no longer have any. I have never felt I do not have a choice. It is this stubborn pigheadedness that has taught me to battle the wolf.
For the lupus patient our bodies no longer have rules. Our world inside us is in ciaos. Armies of our immune system are fighting wars without orders; while our bodies lay back and except it. It creates an environment where the meek rarely survive. Although I know the day will at some time come when I am too tired to fight anymore and the wolf will inevitably win. But until that day comes I am my own warrior. We can fight back to some extent. We actually do have choices in the ridged process of keeping ourselves alive. First and foremost we choose the right doctors that understand our needs. We also have choices of medications (not many but some). And then there is a lifestyle we must choose from. Do I still work? What happens if I exercise? Will I hurt myself? Organic not organic….ash the bombardment of information that hits us from all sides is often overwhelming. Sometimes this onslaught of advice is from good intentioned individuals and yet other times from people wanting to take advantage. So how does the lupus patient sort through all these things that are hitting them all at once and take charge? The answer is easy really. Just take the reins…become your own advocate. Set the rules and governor of your own life. There may be a bit of resistance on the part of the people around you. But if you are practical to your own standards and stick to your principles it should prove to be a much more fulfilled life with purpose and excitement. Instead of someone waiting for the wolf to dig the hole. It was this attitude that brought me on a journey that took me half way around the world.
When the wolf knocked at my door five years ago…I unintentionally opened it. And found standing before me a master of disguises and symptoms. An uncontrollable beast that was sure to surprise me at every turn. So how does one tame this beast? Well for me it reminded me of the monster in the closet when I was a child. My mother said to me when I was a frightened little girl, “Stand up to that monster, and tell him you are not playing. Then turn your back on him and ignore him.” That’s exactly what I did when I decided to fly from Boston, Massachusetts in the USA to Brisbane, Australia. I lost my mother to breast cancer when I was in my 20s although she has never seen me sick she is often with me when I need her most.
Several years ago through this magazine and facebook I met an incredible group of woman. They all had lupus and like me they were just trying to reach out to someone who understood what it means to have a chronic illness. I became real close with many of them. We laughed together, cried together and mourned the loss of others who finally laid down their swords to the wolf. Through solidarity we learn to cope. One particular woman Annie Taylor was always there for me. We mostly talked about life we sometimes compared new symptoms when they would arise, but we rarely complained to each other about the situation lupus has put us in. In that way we were good for each other. We were woman first and lupus patients second. We watched out for each other making sure the other was ok and asked each other about results to latest tests. In the course of this developing friendship we found a common bond in tracking down individuals that were trying to take advantage of sick woman. Together with a small group of other woman we would expose them for who they were. Many people began to become dependent on our crusade and it was an empowerment that not only set them free but gave us strength as well.
Then the most amazing thing happened to me about six months ago. I was contacted by a woman who claimed she was my cousin. She not only was my cousin but lived in Australia as well. She was a mere two hours away from Annie. Her name is Sonya. Her grandfather and my grandfather had been brothers. Through circumstances that were out of his control her father had been separated from my side of the family. His name is Jim. We never knew that each other existed. Sonya told her boyfriend Shane that as a gift to her father she wanted to find his family and that is how Shane found me. The first day we made contact on facebook Sonya and I hit it off wonderfully. Despite the time difference we chatted on line that first day for five hours. At the end of this conversation she said in a slow and simple type…”Debra, my father has lupus.” I stood there looking at the letters on my chat screen. I didn’t know how to respond. I until this point could not find my genetic link to this disease. And of course neither could he. Half way across the world a tear rolled down my cheek. I suddenly felt for certain that answering the door to the wolf was not in fact anything I did but was something that was destined to be. I had never met Jim before. But our bodies knew. Deep down in the DNA markers that claim us; Jim and I was a match: a lupus match.
Over a short period of time, Sonya and I became close. We talked every day sometimes twice a day. I introduced her to Annie Taylor and told her about the different lupus organizations in Australia. I told her that I wanted to go there and see her Jim Annie and Geoff Thomas (the amazing man that has started this magazine). I said I wanted to go to the Lupus Association Queensland’s a
Annual High Tea and introduce everyone to my uncle Jim. Sonya was the one who made me believe it was possible. And then a friend I went to high school with said out of the blue to me not knowing I had these conversations…”Debra you need to go to Australia.” That was it…for me it was a sign. But where was I going to get the money for round trip tickets to Australia. The event was less than a month away. The next morning Sonya said to me..”Debra this is meant to be , you have to have some way you can get yourself here. And then it dawned on me. My friend Tom had asked me about a year ago to do a portrait of his girlfriend Alex. I know if I were to ask him he would pay me now so that I could pay for part of the ticket. And when I get back I will do the painting. He already had many paintings of mine he knew I was good for it. When I sent him the email I got a reply back in less than an hour …it simply said, “You deserve this…I sent you a check for the full ticket…enjoy, Tom.” My aunt Tish was there when that happened. She was intrigued by this whole chain of events. Although she didn’t recall Jim she did recall the stories that he existed. Tish then became my advocate to make sure I had what I needed to take this incredible trip, and to do it safely.
Everyone around me thought I was crazy. Especially since I insisted I go alone…In some ways it was “my walkabout” I had to prove to myself and the wolf that I had a choice. My husband was supportive right from the start. After knowing me for over 30 years he knew there was little he could do to stop me. My daughter on the other hand was very hesitant. At the age of 19 when the wolf knocked at our door looking for her mother she found herself thrown into an early adulthood. Now five years later she feels she is the parent. It is her own personal way of taking charge of this beast. So I often let her take over, but not this time. This adventure was going to be mine. People’s reactions to this trip were often filled with surprised and shocking faces. Many came right out and said I don’t think you should go. What if you collapse just during the journey? You have been hospitalized four times in the past years for heart related issues. What if that happens over the Pacific Ocean where there are no emergency rooms to attend to you. My response was simple and very honest…”Then it was meant to be.” My doctor was an interesting reaction. In an email he wrote “GREAT! Good for you!” It was the most reassuring response I had received so far.
The flight was difficult I’ll admit. For a 22 hour plane ride my biggest fear was DVT (deep vein thrombosis; a blood clotting disorder that can cause a heart attack, stroke and even death). So I naturally spoke to my doctor ahead of time and he advised me what to do. I had been on aspirin therapy all ready so he wanted me to wear the proper socks, do the exercises on the plane, and walk every 1-2 hours, which I did. I was very prepared for all the physical aspects and limitations I would have. What I didn’t expect was the psychological toile it would have on me.
At midnight after a six hour flight, where I had been doing all that was suppose to in the form of exercise and hydration from Boston to Los Angeles I found myself alone and exhausted. With no one to help me with my bags I was walked three blocks through Lax to get to the international terminal. The weather in Los Angeles hit me like an oven door opening. The fatigue of having traveled for that many hours was wearing on me. I could hear the wolf shuffling behind me laughing in my ear…”You thought you could ignore me… to outsmart me …well you didn’t …I will always be close behind you!” I could feel his hot breath trickling sweat down the back of my neck. I wanted to cry. I didn’t have that luxury. I knew I couldn’t waist time or I would miss my connecting flight. I had to press on. What I was feeling in my body was equally scary. My heart was pounding and skipping beats. I been hydrating myself constantly so I knew I had enough fluid but with the sweat now poring off me I was no longer sure. Maybe it was anxiety. Something I have not had issues with before. Moisture was streaming down around my face from under my wig. The sunscreen was trickling down as well and stinging my eyes. Every joint in my body ached. And it also didn’t help that people were plowing through me nearly knocking me down in their own haste to grab a connecting flight. Then it struck me…My mother’s words began whispering in my other ear...as she pushed the wolf off me she said, “Debra tell him you don’t want to play …and then ignore him” My heart began to be filled with strength. There was a determination in my step that hadn’t been there. I was using the adrenaline that was pumping through my veins as something to help me and not something to be afraid of. When I arrived at terminal four at the international section of the airport I was hot and tired but also angry and unwavering. When I walked into the waiting area I was hit by another obstacle. There were no seats and the place was packed. Here I was all disheveled walking with a cane and the flare on my face turning a lovely shade of purple. It was my anger that gave me the courage to go up to a young man in his 20s and insist he let me have the seat that was occupying his luggage. I must have looked like a crazy person because he took one look at me and immediately obeyed.
When I boarded the plane bound for Brisbane I was so worked up. I knew this was an over tiredness that I had to get a handle on. I couldn’t allow this to get a hold of me. With a fourteen hour flight ahead of me I needed to calm the skips that were pounding my chest. I grabbed my water bottle and smiled consciously at my mother who now decided to sit next to me. I forced myself to drink and ate a protein bar I had in my purse. I then took a pillow that was on my seat and tried my best to ignore all the things around me and sleep. I must have looked a train wreck because the man next to me handed me his pillow and said, “Here it might be easier with two”. There were three screaming babies under the age of two all around me. Every time I started to drop off to sleep my body would jump awake with a start at their outburst. At one point I looked up to see the wolf leaning up against the galley wall just past the curtain. He was smiling and laughing at me…he said, “If you need to leave and abort this plane you better do it now.”
My mother whispered in my ear “Just close your eyes Debra, all you need is sleep.” The pain in my joints also played another important role in this mission. Every 1-2 hours my hips hurt so bad it forced me to get up and walk. On the first stretch of the walk I would see the wolf down at the end sitting in a seat and reading a magazine. He glanced up at me with an evil look. I would walk past him and turn to head back… at the other end was Mom waiting for me at my own seat. She had a look of pride on her face. It was a calming feeling knowing she was with me. I would then plop back down and sleep another 1-2 hours. My mother appeared again at dinner time. This time she took over the body of the man sitting next to me. He touched my shoulder gently to waken me and said I think you should eat something. Mind you he knew nothing of my condition we had not spoken other than him giving me the pillow (which I am now convinced were also my mothers doing). He could see by my face that I was in a bad way and out of the goodness of his heart he kept an eye on me. I was not hungry and was so tired that had he not waken me I would have slept through it; an act that would have resulted in a very bad outcome.
I arrived in Brisbane wrinkled and disheveled. But my journey was not yet over , I still had to get myself through customs and security. After a half hour of waiting in those lines I walked through the glass door and was met by Sonya, Shane and Annie. I was so happy I threw my arms around them and Annie handed me a cup of coffee. I wanted to cry with the feeling of pride and accomplishment that was racing through my body. I wanted to tell them what this actually means to me the difficulty I had and how I got through it. Instead all I said was…”I did it…all by myself.” They laughed and hugged me. Looking across the room while I was still in their embrace I saw a woman smiling over at us she nodded in my direction as she opened the door and left … it was my mother. Thank you Mom…I couldn’t have done it without you.