I should, however, state that once my father did call me during my third year on the JET (Japan Exchange & Teaching) Programme - sometime in late June of 1993 and tell me I should get ready to come home because my mother was in the hospital - but no amount of probing would get me any answers as to why.
A few days ago while rummaging through the boxes in the basement, I came across a message from my mother to people who might be considering donating money to a charity. It's a message that is both brave and a little sickening to myself, only because I hate knowing my mother was suffering while I was out screwing the world in Japan. Isn't hindsight effing wonderful?
My breathing was laboured, my heart was pounding in my chest, my voice was weak and I had a nasty cough. I lost my appetite and all I wanted to do was lie down and lose myself in eternal sleep.
This was in the spring of 1993. I thought I was having a bad case of allergies. When irregular heartbeat persisted, I was forced to go to my doctor. Stress test and Thalium tests were undertaken and I was prescribed nitroglycerine for angina. Rapid heartbeats continued and I was feeling progressively worse. After taking a few steps I wanted to lie down. I continued to show up for work, not missing an hour or a day. I read up on angina and felt my illness had not been diagnosed properly. The stress (or treadmill) test alone could have killed me.
I put off seeing a specialist because I wanted to give the angina a chance to react to the medication.
On June 12, 1993, feeling very weak and desperate to to get help, I went to teh hospital. The EKG, Echogram, MUGA, Chest and lung X-rays confirmed that my heart had enlarged due to fluid buildup, and there were patches on my lungs. The cardiologist informed me that I had contracted a virus that affected my heart and lungs, that could cause heart failure and collapse of the lungs. They were not absolutely certain of the cause, and tried different medications. The diagnosis was congestive heart failure or cardiac myopathy.
After a 2-month stay in the hospital, I had to have an angiogram. This procedure is like heart surgery, but conducted via a thin piece of wire which is inserted into the heart. At the conclusion of this procedure, I was informed that it may not be a virus, but instead a rare disease called sarcoidosis (pronounced Sar-coy-dough-sis). Very little research has been done on sarcoidosis. Until recently, I knew very little about the disease. One small brochure was given to me by the Lung Association a few weeks ago, and this is what I learned.
Sarcoidosis is a chronic condition that may affect any part of the body. It is an inflammation of the nodules of the involved tissues. Lungs, lymph, nodes, eyes, skin, liver and spleen are mainly involved.
the cause of sarcoidosis is still unknown. Evidence points to an as yet unidentified environmental agent that the body reacts to. Viruses are involved but definite proof is lacking.
Sarcoidosis is not a malignant disease nor is it contagious. Anyone can get sarcoidosis but it is more common in women than men.
Since it is not known what causes sarcoidosis, there is no way to prevent its occurrence. Some day, through research, it may be possible to expand knowledge, and find prevention and cure.
I have never given much thought to research behind any disease. Now that I am afflicted by an as yet incurable disease, I am determined to do my share to raise money for research and make the public more aware of this disease.
I have lived through a distressing experience and have every intention of handling work and health-related stress in a positive manner.
When Federated Health campaigns roll around next year, or when you are approached by a health organization for a donation, remember that doctors and specialists don't know everything about a disease and they continue to experiment with different medications. You may not reap the benefits of research, but a family member, a friend, or someone you know, may benefit from research.
Research is our only hope to understand the silent killer diseases.
May you keep healthy.
My mother died about a year after writing this.... a year after I returned home from Japan
I had no idea how sick she was when I got back, suffice to say she was in the hospital for a week after my return, and was just having some simple procedure - some woman thing, I was told - and would be out soon enough.
My mother was out soon enough, and for all intents and purposes she seemed quite healthy to me over the next year until she had that fatal heart attack a few feet away from where I write these blogs - my current computer room, back then, was my bedroom.
Let me tell you... to be roused from a deep sleep by my father's scream when he found her lifeless body on the couch... I lost two parents that day, as I would swear my father's soul was ripped from his body.
While it took the fire department mere minutes to arrive at our house to perform CPR without any luck, they continued for 40 minutes until an ambulance finally dragged its ass to the door. Government cutbacks.
They worked on my mother for 30 seconds and lo and behold - got a heartbeat... but dammit... that was 40 minutes of NO heartbeat... and who knows how long it was before my father found her 'asleep' on the couch.
The next week was the worst of my life. While my mother was essentially brain dead that Saturday morning, the doctors wanted to see if there was a chance she might come out of it after the brain swelling went down.
I only visited once at the hospital as I had just started a new job and needed to keep up appearances... but that one time... I watched every 30 seconds or so as an electrical charge raced from her brain to jerk her body in a powerful spasm. It was horrible... though perhaps no more horrible than watching some church friends of her brother's wife come in and pray for Satan to leave her body.
My mother was a saint. There was no evil that needed to leave her... but I did scream at those people for the misplaced prayers to get the fug out of her hospital room.
Late on the next Wednesday evening, with my father beside her, they essentially pulled the plug, removing the life support, and my mother died.
Depending on one's viewpoint, my mother died on September 14, or on the 15th when the death certificate was actually signed... the latter being Noboko's birthday.
What I find particularly galling about discovering my mother's plea a few days ago, was that NO ONE would tell me why she was sick in the first place.
After my mother died, the less said about her passing, the better it seemed to be for my soul-rendered father... so I never brought it up much. I would talk about her to anyone who was forced to listen... about her coming to visit me in Japan... and it would make me smile... knowing that at least during my second year in Japan, her first born son had finally figured out how to grow up.
But sarcoidosis? My mother died from the first guess that House made with every illness on every single television episode? I used to laugh at that guess, knowing only that it was always NEVER sarcoidosis.
Turns out, for once, if he had seen my mother, he would have been correct.
It's been over 20 years now since my mother died, and I am typing this out on the 26th of December my parent's wedding anniversary... it would have been their 51st.
And all I know is that for the first time since she died, I finally have some bloody closure.
Anyhow... I thought my mother deserved to write something in this blog... she did after all encourage me to be a writer.
PS: That image above... that's the damn brochure they gave my mother to explain her unexplainable disease.