First thing tomorrow I am setting out on an adventure that I only dreamt I would ever be having. I’ll be boarding a flight to the land of my childhood dreams and my grown up infatuation, Asia. My final destination will be Kuala Lumpur, Malaysia. The usual reaction I get is “Malaysiaaa?” accompanied by a perplexed grimace that almost looks as if something really stinks. “Why Malaysia?” is the next question. The quizzically contorted faces make my response seem so inadequate. “I’m going to visit my dear friend.” That’s a great reason to travel a long distance in my book, but it doesn’t tell the whole story. This trip is so much more than a visit. I could even call it the “Forbidden Journey” because if I were to go anywhere one would think it should not be so distant and have a more M.S.-friendly climate. Malaysia’s hot, humid, tropical weather is among the top three things that exacerbate the disease. The other two are stress and any infection that stimulates the immune system. Yet my neurologist (who can I say I just love) didn’t miss a beat when he said not only can I go, but he wants me to go.
The last time I inquired about taking a long flight it was to accompany my eldest son, Biagio, to Australia. Dr. Sadiq told me he didn’t want to go. It was a long flight and a taxing one even in the very plush Qantas first class, he advised. I wasn’t flying first class, but I went anyway. My motherly desire to see my son settled while so far away trumped doctor’s orders. When I told him I decided to go, it was just before he stuck a very large needle in my spine to administer an intrathecal chemotherapy treatment. On top of the long flight and Dr. Sadiq’s missgivings, I was to leave only two days after my treatment. Not generally enough time for me to recuperate from a lumbar puncture. But Dr. Sadiq wasn’t concerned for long. Once he got over the initial news he said he was excited for me that I’m living life and challenging myself not resigning myself. I came back refreshed actually. I gave myself 2 weeks in Australia. One was booked in Brisbane getting Biagio settled and I left the second open. Luck and/or the fates stepped in bringing me a great deal on a trip up the Queensland coast to the Daintree rainforest. My good fortune included a seriously great last-minute deal on an incredible place in the rainforest, the Daintree Eco-lodge. I was just “getting lost”, as my boys and I like to call our road trips we used to take every spring break. I found the place I wanted to go and just let the rest happen. I realized it was the first time in years that I had time alone with no immediate responsibility. It was a break not only from the stress of being a mom to four boys and having a chronic illness, but also a break from the self-imposed stress. I’m my own worst enemy. Since my MRI’s have worsened, a sign my disease is progressing, and my insurance company won’t pay for the one immuno-modulating treatment I haven’t already tried but which is very promising, Dr. Sadiq didn’t blink when I asked if he thought I could go. He brought up how well I did in Australia despite his misgivings. With his blessings I planned my trip.
I didn't really want to advertise that I am leaving tomorrow for Asia. It's crazy to think that I can do a trip like this and I didn’t want to invite any judgements. The socially-networked society we live in won out and ‘everyone’ is onto me. I have been living with Multiple Sclerosis since I was 15 and diagnosed since I was 32. I struggle to grocery shop, attend family gatherings and just plain function. Every moment holds hopes and fears for the moment that will follow, such is the unpredictability of M.S. I ask myself why do I think I can handle this trip. The flight alone, JFK to Dubai then on to Kuala Lumpur, is a daunting 24 hours. How my body will handle being cramped in coach that long is beyond me. But time passes and I’m not getting any younger. I’ve lost so many dreams to this disease so I am seizing the moment to realize this one that has been simmering and growing in my psyche since I was a child.
The dream really began when I was 10 years old. My cousin, Marie was living in Taiwan. I still have postcards that she sent with photos of exotic landscapes and temples–small glimpses into another world that brought the promise that the stuff of fairytales exists. Her stories were even more incredible. She had a close friend who lived in Jakarta and tales of monkey antics, beaches in Bali and cultural mores took on a life of their own in my quiet but adventuresome mind. They danced around in my imagination somewhat like the characters in the Nutcracker ballet. The difference is these places in the far away land called Asia were real. Since then I have delved deeply into yoga and the study of Buddhism. I even saw His Holiness the Dalai Lama in a relatively intimate setting at the Buddhist Learning Center in Washington, New Jersey. In a way the Marie’s stories have taken hold. One thing I never thought I’d do, that I chalked up as another dream pilfered by M.S., is to go to Asia, the birthplace of Buddhism, not to mention many other important philosophies. The main message that helps me cope is that life is filled with sorrows. Finding joy is to transcend the sorrows of the world. They won’t disappear. Bad things happen. And sometimes those bad things bring good things if you’re open too the idea. All we can do is go on with an open heart and not be defined by the bad. As much as I hate M.S. it has given me many gifts. It’s brought me a world that is sometimes nightmarish. Yet even in this land of disease at heart I am a tourist seeking to learn. Worthwhile lessons are everywhere. So if I can navigate the world of M.S. why not tackle Asia. The worst thing that can happen to me would be if, when the time comes that I am taking my last breath, I have regrets. Regrets of not having or not doing for reasons out of one’s control are inevitable and we just have to let them go. Regrets for not trying, for me, would be unbearable. I even changed my mind this a once-in-a-lifetime experience to this is the beginning. I’m doing recon for future trips with my family. Why have the pressure of feeling that this is it. Chasing this dream has opened up doors to many other possibilities. Perhaps Marie’s stories provided the impetus for me to want to learn languages and to live abroad. Certainly they opened my mind to a curiosity for places and people who are worlds apart from me.
Dreams are lovely and we all have them. Without them where would we be? I believe that it’s important to chase them as long as it’s with an open mind tinged with some ‘reality’. My wish of being a prima ballerina, for example, is one of those that are the debris of life. But I’ve been forced by this unwanted disease to give up on many important dreams. Some were not only attainable but already tightly in my grasp. I was relishing an exciting career in graphic design when I was finally diagnosed. After collapsing in my office on 18th street I tried everything to hang on my relatively short-lived but illustrious career. But the world of design in the fashion industry is a fast-paced one and for me it was all over by the end of 1996. I feel sick to my stomach to even think about how long ago it was. It was a blip on the radar of my life. It took me a long time to not identify myself with the title of Graphic Designer. I’ve tried to do little freelance things since then, but the ever-increasing cognitive impairment I’ve suffered from those nasty little lesions on my brain prevent me from being able to perform and keep up with the ‘normal’ people. I would never be able to even make it to a job everyday. When one day is ‘busy’ for me the next day, or two...or three...are for recuperating. I have to pick and choose how to spend my ‘good’ days very carefully. Now here I am “spittin’ in the wind”, going against all common sense, and embarking on my adventure. Fulfilling a lifelong fantasy. Living.
Honestly I wouldn’t be going were it not for my friend Elizabeth. We’ve known each other since college in St. Louis. In spite of never living in the same country since then, we have maintained and nurtured our friendship. Now our lives, as different as they are, have led us to the same path. She has always believed in me more than anyone else I know. She always told me that I was a good writer (I didn’t say she was right) and a good artist. She still has on her wall a drawing I did of her for one of my studio classes. We had just flown back to Saint Louis from a month in Spain and pulled a quasi-all-nighter, she the model and I the artist, so I could go to my class the next day with the assignment that was due. This fall we were together again after not being on the same continent. She came to New York and I double dutied a girl’s weekend in the city with Dr. Sadiq’s annual M. S. symposium. True friends are the ones with whom you have a connection that time and distance can’t weaken and Elizabeth is one of the truest. For us it was like no time had passed. That in itself was a tonic. During our week together she regularly brought up the topic of me going to Kuala Lumpur to visit, peppering most of our conversations. She even brought it up to Dr. Sadiq in the two minutes or less that she spoke to him after the symposium, planting the bee in his bonnet. She actually had tears over the fact that there is no room, between family and disease, for my art. It was sad to her that I gave up the dream of making art. Some can be blamed on MS, but mostly I’m to blame. I lost my courage. I lost sight of the adventure of creating and for all it takes out of me mentally and physically it gives back so much more. With Elizabeth’s support I will be indulging in my yoga practice, visiting Buddhist temples, meeting new people from new and wonderous cultures and while doing all that I will be trying to reconnect to me. The me that she remembers possibly better than I do. She believes that I can still fulfill my need to express myself in paint, in words, in any medium that answers the call.
During that October visit my friend (and I do not use that term lightly) told me she was going to move to the States and spend time with me, maybe move here near me, to support me and my art. She remembers me when I was young and had all my dreams in tact. I was too blinded by all the possibilities laid out before me to be fearful, or reluctant, or even careful. The world was the buffet and I just had to decide what to fill my plate with. We were both like that. The international school where Elizabeth is teaching is going through changes. Her son has graduated college and her daughter is a sophomore in college. She is truly a citizen of the world. Her father was an American diplomat, her mother was from Madrid, Spain, Elizabeth was born in Venezuela and has lived in more countries than most people visit in a lifetime. Until moving to Kuala Lumpur several years ago, she lived in Quito, Ecuador. She joined her parents there where her father was serving his last assignment as a diplomat. She met a young business man from Poland living there. They married, had two children and had a wonderful life there. Some of her siblings are in the U.S., some are in Spain, both her children are in Poland doing their undergrad and postrad studies. Between them all there is a plethora of languages, countries of residence and citizenships. Having lived abroad more than in the States, Elizabeth has no real home base now that both her parents have passed away. The fact that she would even consider testing life in suburban New Jersey as her home base so she could be near me is humbling. We have different itineraries but for now we are traveling companions. I will do everything I can do to support her in her life travels. Hopefully I can reciprocate the lift she’s already given me on mine. So bring on the long cramped flight, bring on the heat and humidity. I will have my friend and together who knows what we’ll conjure up.
My flight leaves tomorrow at 10:40 a.m. barring any major delays from the snow that started a little while ago. For some people I’m going on a vacation. I joke that I’m running away from home, but secretly feel it's a spiritual journey. Others say it’s the trip of a lifetime. It’s all of the above. And more.
