Prologue
“Aarrghh”, yelled Jay as they drove frighteningly close to the truck in the right lane. “Just don’t make me laugh or we will hit something”, joked his buddy. They were on their way back from Newark Airport where his best friend had just picked him up after his flight from Australia.
We both talked about the old days as we continued on with our journey. It was hard to believe that just two years ago Jay had received a call informing him that I had been admitted to the emergency room at the local hospital.
“The Nightmare”, as I call it, started without any warning in February 1999. It was the evening of the 14th and I had just returned from work. I had started a new job a couple of months ago as a senior manager in a software company on Long Island and was finally comfortable with the projects my team had to complete. I was sitting down at my computer at home penning a memo to a coworker about new policies needed for print-based advertising campaigns launched in the future at our company when I felt a sudden twinge in my left leg. When I looked down I was surprised to see my leg swelling below the knee. Figuring it was probably just the result of hurting my leg somewhere at work or at home, I took a painkiller and decided to call it an early night. Thankfully, it was Friday and I had the whole weekend to recover.
I wasn’t really feeling ill or I would have called a doctor, it was just a simple swelling that would probably go down in the next few hours. Even though I was considerably overweight, I have been at this same size since I can remember and have always led a fairly active lifestyle. I was 25 years old, earning a very good living, had a good group of friends as well as my share of relationships. I had left a large multinational company a couple of years ago where I worked in Sales, Marketing, Branding, Public Relations, Technology and Consulting – I had risen up the ranks through long nights and longer weekends of hard work – and earned the respect of many of my peers. After that I had started my own Internet consulting company (way ahead of its time) and had passed it on to my partner. I had left my digs in New Hampshire to conquer new territory in New York and had made considerable progress here professionally in the last few years. I definitely considered myself a success and it was perhaps this feeling of invincibility that caused me to believe that a swollen leg couldn’t slow me down for long. Was I in for a surprise! Chapter I: The Nightmare Begins
As dawn broke the next day, I could sense that something was wrong.
My leg had ballooned up so that my skin felt like the skin on a plump sausage on the grill – ready to pop open at the slightest touch. I was now nervous and decided to call my “American Family” for advice. I had met the Brunolds’ about four years ago through a common business acquaintance and since then Peter and Deanne had welcomed me into their family. Apart from moving to NY on Deanne’s insistence, they had also played hosts a couple of times my father visited me from India and I had joined them for several family holidays like Christmas and Thanksgiving. Now they were my family and I called them for advice.
Deanne was calm and reassuring on the other end of the phone. “Come on over and lets have a look at it”, she said, “maybe I can get find some Epsom salts and you could soak in the tub and see if you feel better”. So, I struggled to my car and drove the couple of miles to their home. As soon as Dee opened the door I saw a serious look on her normally cheerful face. She could see the pain in my eyes and noticed the way I limped into the house. “I think its best if we get you to a doctor immediately”, she muttered as grabbed her jacket and keys and herded me back outside to her car. “I am going to take you to the emergency room at the hospital and we will let them have a look at your leg”. Since it was the weekend and I didn’t have a better suggestion I followed along quietly to my first visit to a hospital.
The Emergency Room
I got to the Huntington Hospital Emergency Room and after a four-hour wait, was finally seen by an ER doctor . He asked me if I had ever suffered anything like this before and I answered in the negative. He proceeded to explain that he suspected I had a clot somewhere in my right leg and that they needed to admit me for evaluation and to run a couple of standard tests.
As they transferred me to a stretcher and wheeled me to my room I remember viewing this entire episode as a surreal dreamscape and that I would soon wake up and be back in bed in my apartment. It was
as though this was an episode on some TV drama and this was all happening to someone else.
They finished the evening with a strong dose of morphine to help with my growing pain and I dozed off…
A Blur of Activity
The next couple of days passed in a blur of activity - from regular blood drawings to EKGs and Ultrasounds. Many doctors visited me as they pondered over charts and test results. My primary physician finally informed me that I had been diagnosed with a DVT (Deep Vein Thrombosis) in my left leg. He said they would keep an IV of Heparin going until the clot was broken down and that I was to stay of my leg until he advised me otherwise.
Over the next few weeks my swelling went down as the clot dissolved but the doctors found two other conditions that required monitoring – I had been diagnosed with Vasculitis and Colitis. They had also been confused about a couple of things: 1) my white blood cell count was extremely high (more than ten times normal) and they could not diagnose with confidence whether I had Ulcerative Colitis or Crohn’s or any other form of Colitis. After a colonoscopy and biopsy it was explained to me that the condition presented itself like Ulcerative Colitis but they had not found any ulcers in their tests.
The weeks stretched on and March came along – I was left to celebrate my birthday in the hospital. In March a “Pyodermic Gangrenosum” was discovered on my left arm and since the necrosis around this “skin ulcer” was extensive it had to be surgically “debrided”. For those interested “debriding” consisted of scooping out an inch wide area out of my left arm – even after two years and a complete healing I still carry this “hole-in-the-arm” as a grim reminder of this condition. Dressings and topical solutions were prescribed and applied on a daily basis.
As March slipped into April, the gangrenosum and the underlying colitis/IBS (irritable bowel syndrome) grew to be less of a complaint and the doctors finally thought I was stable enough to be released from the hospital with a battery of pills (8) but this was nothing compared to what was waiting for me down the line. However, I was glad that my eight weeks of hospitalization had finally ended. Luckily my health insurance company was totally supportive and stayed in the background, paying for all my hospital expenses.
Disability Issues
During this period I had no income since the disability I had applied for though my employer had not been approved yet. Also, since my apartment lease had ended in March, I had nowhere to stay. Desperate I called an old friend, Jeff in Nashua for help. He immediately offered to send me money to help with medical and transportation expenses and even called a local motel and arranged a month’s stay at his expense. He also sent me a care package filled with food, along with the cash to help with my expenses.
A Date that will live in Infamy
April 14th 1999. This is a date that will be hard for me to forget. I slept late the night before and when I woke up I was startled to find a very different view of my world. I could not see anything on the right side of the bed. Scared and frustrated at my recent medical problems, I managed to call a friend and explain what had happened and he rushed over to get me back to the hospital.
As doctors and nurses who I had just left a couple of days ago looked on with concern, an opthamologist tested my right eye, dilated and shone her flashlight down my eye – I could still see nothing through my right eye. The opthamologist instructed me to be connected to an IV of Solumedrol (Methylprednisolone – a steroid) and had me admitted to the hospital again. I was informed that I had suffered a “Retinal Vein Occlusion” which was a clot or thrombus in the central retinal vein, and they were going to pump megadoses of steroids to try and dissolve the clot but that most probably I had permanently lost the vision in my right eye.
The steroids (now a constant part of my medication regimen) continued in megadoses for a week, and then tapered down once it was obvious that we could do nothing to bring my eyesight back.
So now April whimpered into May and the dilemma of a concrete diagnosis of what was happening to me still loomed heavy on my team of doctors. Additional tests were conducted to check for HIV, Hepatitis and other related diseases to narrow down the diagnosis but they all came back negative.
Finally, it was decided that due to the complexity of my case, I was to be transferred to North Shore University Hospital in Manhasset, NY.
Chapter II: Welcome to the End?
I was greeted as a dignitary at NSUH and assigned a prominent oncologist as my primary physician. I was made comfortable in a very nice room in the Don Monti Cancer Ward at the Hospital and for the next few weeks was visited regularly by a posse of interning doctors led by my physician who asked me to repeat my tale, queried me for all sorts of information. Since the food was excellent and the cable selection was adequate I was happy to oblige. Prednisone really builds up your appetite!
While at NSUH I was further diagnosed with steroid induced osteoporosis with significant bone loss and migrating juvenile arthritis. My primary medical condition was also diagnosed as Hypereosinophilic Syndrome (a non cancerous blood disorder similar to Leukemia). My chemotherapy, which originally started with Hydrea (hydroxyurea), was changed to a new drug called Vepesid (etoposide) to keep my white blood cells down to a more normal level.
Also during this stay I was visited by two psychologists because the doctors believed that someone in my shoes should be going through feelings of depression and were concerned that I wasn’t really showing these emotions since I was always cheerful and made jokes when they visited me. I explained to them that I had grown up with a very solid grounding and it would take more than this to cause depression – but I did admit feeling homesick. I had not seen my mother and younger sister for nearly ten years. My sister was eight years old when I left home and she would soon be graduating high school and even though I had called them often and spoken to both on the phone, I definitely missed them a lot.
By the end of May, NSUH discharged me saying that I was stable now and should be safe if I stuck to my medicine regimen. They also prescribed a migration to Lovenox (low molecular weight heparin) from the Coumadin I had been taking since February. The only issue with Lovenox was that it had to be subcutaneously injected and I had to learn how to inject myself.
The doctors encouraged me to take this opportunity to visit India and see my sister and mother again. So I did.
Home coming!
June 1,1999. I limped off the British Airways flight that had brought me home after being away ten years. My mom was there to greet me and after a teary reunion, we headed home.
From the taxi I could see how much even a bustling, ancient city like Delhi had changed in a decade. Many new skyscrapers loomed where single story factories and homes had been not too long ago. Once we reached home a strange weariness grew on me. It got so bad that I was forced to use a cane to move around. Due to this condition, which I dismissed as jet lag, I did not leave the house for two days.
On the third day home, I got up early and went to help my mom with the usual morning chores that we grew up with – mainly filling up our water stores before the public supply was shut off – this normally happens daily around 10 am. However, my mom did not want me helping her due to my weakened state and ordered me back to my room. I retired back to my armchair and turned on the TV. Mom had just signed up for cable (a new luxury in India) and started to watch CNN.
I had trouble seeing colors so I decided to manually adjust the picture. As I was bending over to play with the controls, my body suddenly went numb and I crashed to the floor, dislocating my right arm and fracturing (hairline) my back.
I lay unconscious on the floor for about 15 minutes. I was awakened by my mother kneeling beside me screaming with tears streaming down her face. I kept hearing her voice, far away it seemed, urging me to get up, but the floor felt so cool and comforting in the growing heat of the day that I just lay there hugging the ground.
Finally, the ambulance arrived and I was carted off to the best hospital in India – All India Institute of Medical Sciences (AIMMS) – the same one that Indira Gandhi was rushed to after her assassination. After spending four hours waiting on a stretcher in the lobbies of the overfilled hospital we were turned away because no beds were available.
We then proceeded to another hospital a few miles away only to find intolerable sanitary conditions. I guess I had really been spoiled by the NY hospitals and could not bear lying on a hospital bed that was no more than a wooden frame with jute rope lashed across it to provide support and a bamboo pole holding up IV bags that resembled trash containers. Yes, I believe I have been Americanized!!
A Step Up
With me being treated temporarily in this makeshift medical facility, my mom was outside figuring out where she could take me next. In a desperate attempt she called her own homeopathic doctor for advice. He happened to know a doctor who had just returned from America who was starting a private hospital closeby. The only problem was that the hospital had not yet opened for business – we were a week too early. Mom never gave up hope though, and proceeded to call this doctor.
After hearing my story and realizing that quick treatment was crucial, he agreed to admit me immediately. We got over there later that day, I was relieved to find a superior medical staff and facilities than I had experienced the last few hours. This hospital was even better than NSUH and I was impressed with the capabilities of the doctors attending me. I was then to face an exhaustive battery of tests as they figured out what was happening inside me.
The Diagnosis
After an MRI, it was revealed that I had suffered a stroke. The scan had shown infarcts (small clots) in the left side of the brain. Additionally, when I tried to move I found that my right side was partially paralyzed even though my speech had not been impaired.
I was put on a new regimen of medicines as the doctors prepared me for the journey back to the U.S.
My doctors in Manhasset were called to inform them of my current situation and before the end of the week I was on a plane with my mom back to America.
I touched down at JFK and a waiting ambulance rushed me over to NSUH. Here I faced another battery of tests, as the doctors here repeated all the tests that had been performed just a couple of days ago.
Since the pain from the fracture was increasing rapidly I was kept on a continuous Demerol drip that served to make the next few months pass quickly. Except for occasional hallucinations and random moments of consciousness I stayed in a daze until the beginning of November 1999. Around the first week of November the Demerol drip was replaced with Demerol injections as needed and I slowly regained my senses.
I found that the months of bed rest had left me even weaker than before. The right side of my body had reached such a state of paralysis that I could barely move the fingers of my right hand. Now that I was “awake” I was eager to get of the Hospital and into a Rehabilitation program to return to everyday life. Initially, the doctors at NSUH were hesitant to release me because they didn’t feel I was ready but my persistence paid off and they agreed to have their own Physical Therapy Department start rehab work with me.
Rehabilitation
I still remember vividly the first few weeks of rehabilitation at NSUH. The first step was to get me to practice sitting up for an hour everyday. This probably caused some of the most pain in my entire rehabilitation process. I would normally be in tears about 45 minutes into each session but with the help and patience of the nursing staff at NSUH was able to complete this step by mid November. Meanwhile, I also started to practice using a walker. As soon as I was able to walk 100 yards with the walker, the doctors decided I was ready for intensive rehabilitation and chose to move to a hospital specializing in rehab – Central Island Hospital in Plainview, LI .
Suffice to say that during the next three weeks I received probably the best rehabilitation available to the common man in America. With two physical therapy and one occupational therapy session every day, I was ready for the real world by Christmas 1999.
Still wheelchair-bound I decided to try an Assisted Living Facility in East Northport to ease my return to normalcy. Ironically, the care and living facilities at this “Old Folks Home” were so poor that I was further motivated to get out on my own. The only bright spot of this period was the Physical Therapist that worked with me. He had me leave the wheelchair by February 2000 and I was just using a walker from then on. By the end of March I was walking confidently without any assistance, no walker or cane, and had even started driving again.Towards the end of March I suffered terrible pain in my upper abdomen. Bent over in pain and ignored by the staff at the “Home” I called 911 and was rushed to the hospital. After three days, unfortunately, the doctors could not find any reason for the pain
except that perhaps I had developed a kidney stone that I must have passed – all they do was shoot me full of morphine and release me with a ton of pain killers.
Additionally, I was also informed that the latest serologies had found a new threat. I had shown up as being Hepatitis B positive. The doctors were completely baffled by this because both hospitals (Huntington and NSUH) had tested me repeatedly the year before for HIV and Hepatitis and I had been negative. Since I had no sexual contact with anyone during the last two years, they concluded that this must have occurred during some transfusion I underwent at NSUH during my last stay there.
Due to my ongoing Vepesid and Prednisone treatment the doctors were unable to prescribe any strong medication for the treatment of hepatitis and wanted to wait and see if my body would just heal itself of this virus. This was known to happen in six to eight months in a small percentage of patients.
By the time I was released, my mind was made up about another facet of my recovery. I needed to focus on gaining my strength back because the Hepatitis was adding to the general weakness I was undergoing due to the stroke and extended bed rest.
I proceeded to purchase a car with money from my private disability savings and started an earnest search for an apartment. Disgusted with the lack of support and services at the “Home”, in April I rented an apartment in Huntington Station. I was finally on my own!!
Chapter III: Independence
As I moved into my new apartment , I made a commitment to follow a daily regimen of exercise to get me to my goal of returning to normalcy. Throughout spring and summer I continued my isometric exercises atleast three times a weak and tried to get to a neighborhood beach’s boardwalk once a week for a walk. I was making considerable progress.
When November 2000 came around I developed another round of complications. The abdomen pain I had experienced before returned with vengeance. On admittance to the ER, a scan showed possible gall stones and I was scheduled for a Laparoscopy. Due to my current regimen of Coumadin, even this simple procedure for the removal of my gall bladder became complicated. For the first week I was put on Heparin so that the Coumadin could be purged from my system. The reason for this is that Coumadin is a powerful blood thinner and might cause excessive bleeding during a surgical procedure whereas Heparin (also a powerful thinner) can be stopped a couple of hours before the procedure and does not maintain its thinning properties any longer.So after a week I underwent the laparoscopic procedure for the removal of my gall bladder successfully and without complications. I stayed in the hospital for another week to be stabilized with Coumadin. Additionally, since my Hepatitis was still active, I was prescribed a new medicine called EPIVIR (Lamivudine) for its treatment.
Back Again
I was released around the end of November and returned to my apartment, eager to strengthen myself after this stay. Things were progressing well until the end of December. On December 27th we experienced a huge snowstorm that dumped about 18 inches of snow in just a few hours. Since my landlord was away for the weekend, I ended up snowed in for two days.
After the second day, the weather looked really good and I mustered up the courage to go out and brush the snow off my car. I basically wanted to get the snow off so it doesn’t ice up when the snow starts melting. I had no desire to dig out my car since I noticed that the plows clearing the street had piled a mountain of snow next to my car.
The snow was still light and fluffy so brushing it off was not too hard. After I finished that I headed back down my driveway but unfortunately, I slipped and landed hard on my hip. The pain was intense and I decided to just lay there until the pain subsided. Luckily, I was bundled up pretty well and did not feel cold yet.
A few minutes passed and the pain had still not subsided so I tried to get up but there was a sharp jabbing pain in my right hip. Concerned, I used my cell phone (I always carry it on me as a precaution) to call Deanne up for help and she and Peter rushed over to help. When Peter tried to lift me slowly, the sharp pain in my hip returned so they took me directly to the ER.
The ER doctor believed that I had either fractured or dislocated my hip joint so he ordered x-rays. The x-rays showed that I had a crack in the right groin area of my pelvic plate. I stayed in the hospital until the first week of January when I was released in a wheelchair. The ambulette left me at the house and brought in the walker and wheelchair that the insurance company had provided me on the doctors’ recommendation.
So here I was, back in a wheelchair – unable to walk due to the pain and with no assistance. I thumbed through a local Penny Saver and called an ad that offered home care services. I hired the aide on the spot and she promised to come the next morning. I had also scheduled a home visit from a recommended Physical Therapist the following morning.
Chapter IV: Pasadena Bound
With the assistance of the aide and the patience of the new therapist I am now returning to normalcy again. I am now making plans to return to work, but before that I want to take a short trip to visit some key friends and family members who have stuck with me through all this. It is sad that you have to go through something serious to really get to know who your real friends are.
The love of my life
During my visit to friends in Southern California I received an email from a pen pal that I had been corresponding with for the last year. Rhona had written to me informing me of her temporary residence in Pasadena, CA. She encouraged me to stop in and say hello so she could witness my progress.
I was in Los Angeles in November 2001 and gave her a call. She was excited to hear from me and we agreed to meet in downtown Pasadena that evening for a “date”. It was a little weird for us because we had shared so much with each other over emails that we felt we really knew each other but we had no idea what either of looked like. We decided that we would pick a quiet restaurant to meet at and I told her what I would be wearing so she could recognize me.
We met around 7pm that evening and really enjoyed had a good time. By the end of the evening she invited me to attend Church with her the next day. There was a youth ministry that she belonged to that met right after the morning service and she felt that meeting others from her group might be a good experience for me.
I went home very happy. I have had girlfriends before but never felt about anyone like I felt about her. Something inside me told me that I had just met my life partner. There was something about her confidence and no-nonsense attitude that just drew me to her. She was nothing like the dreams I have had about the ideal woman … she was more.
The next few weeks were filled with bliss. I loved the Church, loved the youth group and the fellowship I felt here. Most of all I loved being with Rhona.
Wedding Bells
I decided to make Pasadena my new home. When I informed Rhona of my decision, she invited me to join her family for Thanksgiving since I was not going to be returning to New York. I asked her to meet me the evening before at a romantic Italian restaurant near the Church. We had often commented on trying the food there as we passed it every Sunday.
I spent a busy morning that day at the Jewelry Mart in downtown Los Angeles. It was a magnificent day and I had decided to propose to her that evening. I knew that we had really not spent as much time together but due to my recently found appreciation of life, I did not want to pass up any opportunity. On pins and needles I picked her up and drove to the restaurant. Rhona looked like a real angel and I was at complete peace with my decision. After we ordered our main course I slipped away for a chat with the hostess. I explained my reason for coming here and asked her to bring us two glasses of champagne with dessert after our meal and gave her the engagement ring to place inside Rhona’s dessert.
To my relief Rhona was thrilled when she found the ring in her dessert and with tears in her eyes accepted my proposal. We sat there for a long time discussing our future together and our dreams.
We are currently happily married and looking forward to our one year anniversary in March 2003!
Final Thoughts
It is sad that you have to go through something serious to really get to know who your real friends are. It is also sad that it took something so trying to force me to re-evaluate my life. I had not taken any vacations during my first ten years in the U.S. and worked with my nose to the ground. Now I have learnt to appreciate the simpler things in life … the things we take for granted, like walks on the beach, a ride through the countryside and the company of loved ones.
I hope that others reading this do not wait to learn these gems, remember what is important in your life … money comes and goes but good friends and family stay forever. Health is one of the most important things, without which you may not be able to enjoy all the things you are working hard for. The other important thing is faith – no matter how tough your situation seems, there is always someone going through a much harder journey. Remember, everything happens for a reason and whether you believe it or not for the best. Don’t give up faith – faith in yourself, faith in the people around you and faith in whatever else you believe in. I am not a very religious person though I do believe in God but I am not going to say that I gained strength from that, though I am sure that it was the prayer of all the people around me (Christians, Jews, Buddhists, Muslims and Hindus) that played a major part in my recovery. I will let you reach that decision in religious faith up to you.
Peace.
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