Sometimes the Internet can be an enlightening place....
|While cleaning unnecessary files from my computer, I came across this story, I wrote some years ago. The story doesn’t hurt as much as it once did because I’m one of the lucky ones. I realize a relapse can occur at any time, but what the hell? I’m still fighting…
A VERY SPECIAL FRIENDSHIP
When you’re attempting to succeed as a best selling author, you have a tendency of getting disillusioned when your manuscripts are consistently refused. I know I do. You find yourself reading each rejection letter with increasing animosity, and you either rip it up or file it away, wondering to yourself what you could possibly be doing wrong and if you will ever be able to make you dream come true. As a result, I visit the Internet hoping for an idea or two.
Several months ago, while playing a game on the “Net”, I noticed a statement typed in by one of the male players during the chat between the games. It wasn’t an erotic remark or subtle come on; he mentioned being diagnosed with Multiple Sclerosis. I typed in some casual remarks and questions of my own…and why not? I’ve had the disease for over thirteen years. But more on our encounter later…
At this point in time, I can honestly say I’ve been fortunate, but in a curious way. My M.S. has progressed as expected of course, but not at an alarming rate. I’ve had some relapses that have made me wish that I was dead, but I survived. My left arm is weaker at this point and there are some days that the fingers on my hands seem stiff and don’t obey my commands. There are other days that I feel I have to live on my prescription of meclizine to combat severe dizziness I feel with every move. Still, I’m able to maneuver and feel pretty good and I hope this story explains why.
Back in 1975 I developed a period of unusual blindness. This was not the black-as-the-inside-of-a-cave blindness; this was the inability to see anything when I looked at it directly. The blindness seemed to be a perfect circle affecting my direct focus. I could see around the darkness, but I could not penetrate that murkiness no matter how hard I concentrated. I visited several optometrists and ophthalmologists, asking and hoping for an explanation. Soon after the sight problems started, a strange dizziness did also. Desperate for a diagnosis (and a cure) my husband I went to the emergency room of one of the larger hospitals in the city. After quite a few series of blood tests, spinal taps and eye exams, I called my husband from my hospital bed at 1:00 AM and begged him to come and release me from this hell.
“Enough with my body being the guinea pig,” I yelled, (and I do mean yell,) “I want out of here…NOW!”
A day later I was at home, still sulking about the entire situation. Then the most peculiar thing happened…the unusual ailments went away as mysteriously as they came. Not one person…the doctors, my husband, family, friends, nor I could explain it. As the months proceeded onward, the event grew into a hazy memory. After all, I was 22 and had my entire life in front of me
In 1976 and after five years of marriage, my husband and I made the decision that a family was in order. We presented the world with two beautiful girls. My daughters are what you would call “Irish twins,” both making their entrance in 1977…one in January and one in December. Everything was still moving along as planned. We bought a house, the girls were in school, I had changed careers, hubby changed jobs, and life was status quo until 1988.
I was standing in line at the local grocery store about to write a check when I noticed that I was having a difficult time holding onto the pen, let alone guiding it to a legible signature. I shrugged it off, blamed it on a pulled muscle and decided to do the best that I could. Days later at my job, I suddenly discovered that speaking to one of our customers was also becoming tricky; the words would not come out coherently. The final straw was the inability to walk without dragging my left leg. At that time, even I had to admit I needed some answers and it meant only one thing; back to the doctors. I used some sick leave and went on to search for answers that I never wanted to acknowledge.
During this entire disaster, I did receive somewhat of a blessing from heaven. My doctor at that time was a General Practitioner who heard my complaints and was sharp enough to refer me to a friend of his who happened to be a neurologist. Puzzled, I took his friend’s name and waited while he called his office and mentioned to them that he would prefer having his friend see me, especially because of my list of medical complaints. He also directed me to make an appointment to have an MRI at one of the near-by medical centers. All this was simple enough to me; there would be no pain and no hospitalization. I diligently followed his orders and then visited the neurologist to obtain my test results.
Multiple Sclerosis? It sounds familiar…I think that they have a Walk-a-thon or something…but me? There has to be a mistake…I am only 34…I have two young girls…I have too much to do yet. My doctor, however, assured me that there was no error in the results. He presented me with piles of information and carte blanche to contact him for with questions that may arise in the future. After receiving the news from my doctor, I don't remember the ride home but I do remember that once I opened the door to my house I broke down and cried…and cried. I understood that I would eventually have to shatter my husband with the upsetting news and I thought I would do it while the girls were still at school. He was feeling the same disbelief I was. He left work early that day and came home just to sit with me and watch me rant and rave about there being no fairness in the world.
Everything seem to hit at once…the strength in my left hand rapidly deteriorated leaving me with a numbness from the elbow to my fingertips…making a sudden turn while standing was no longer tolerated, the headaches increased in frequency and intensity and the ability to stay alert and awake for more that four hours was a luxury. Since my condition was also heat sensitive, my working in the factory’s laboratory was also looking like a thing of the past. That meant permanent disability and our income being cut in half. The worse thing about it all was what the diagnosis did to me.
To this day I still don’t know how my family and friends endured my irrational behavior. I took on the principle of one of my most hated stances…the double standard. I hated the idea of being disabled but became moody and insolent if any person did not take my health condition in consideration during any disagreement. I preferred to make isolation, resentment and bitterness my way of life. If I was in a proverbial hell, I took on the conviction that everyone around should be in it with me. I also chose to pass on my unbearable attitude to the people who were always trying to help me. A loving and supportive viewpoint from me was also a thing of the past. I was angry, belligerent, mean and nothing outside a cure was going to change me. My husband and daughters saw it…and felt it daily.
One evening, I remember sitting at the kitchen table with one of my ever-present vodka and tonics, sullenly spinning the wet glass on the table. My eldest daughter came up to my side and touched me on the arm. I was in one of my usual brooding moods and chose to ignore her.
"Mommy, are you going to die?" she quietly asked.
I angrily turned to her and noticed the confused innocence on her face.
"Whatever possessed you to ask me such a thing?" I asked bluntly.
She answered in an unhappy voice. "I heard Daddy talking and he said you were sick. My girlfriend said that when big people get real sick, like her grandmother did, they die."
I ‘m happy to say that was the final day of my self-pity. I scooped her up in my arms and hugged her so hard that even I had reservations about her small ribs. I looked at her and smiled.
“Nope! Mommy’s going to fight as long and hard as I possibly can….I promise.”
I fought back the tears, kissed her on the forehead and wished her good-night-sweet-dreams-don’t-let-the-bedbugs bite as I held her hand out to her Dad. He looked back at me, winked, and left to tuck in our two daughters into their beds.
That was thirteen years ago…I’ve since been a Girl Scout Leader, have served on the Local School Council in positions from Parliamentarian to the President, helped my daughters through school, assisted with the plans for their weddings and became a grandmother. My neurologist and I sometimes laugh that after thirteen years of visits, we are growing old together and our relationship has lasted longer than some marriages. I enjoy joining my family and friends in parties, shopping, vacations and harmless mischief when the opportunity arises. I’ve lost some of the use of my left hand and am noticing subtle twinges in the right, but I still thank the Lord that I am still around to enjoy life and everyone in it. To sum it up…I finally accepted what was not my fault, resolved not to make it a death sentence and, if possible, help anyone out in the way that I have been helped. I have my days, but doesn’t everyone?
Now back to the Internet encounter…we had been aware of one another by our screen names for some time, but never really chatted on any level besides “hello”. He mentioned the MRI and his dismal diagnosis and in between the words of consolation from the other players, I asked him few questions and offered to answer anything he might have regarding MS. He disappeared from the screen shortly but the rest was the beginning of a special kind of friendship. I remember talking to his son afterwards, giving him my private messaging number and requesting his father's. For the first time since I had been diagnosed with MS, I finally shared the secret of my fight with the disease with another person…a person who needed to know. What he didn’t know I told him and vice versa and I finally managed to help someone who might be feeling as depressed as I once did.
It’s been quite awhile since we first started to talk. There is the occasional fight...like being chewed out for not being able to give up the bad habit of smoking. (I did finally give it up for everyone and myself.) I also learned backgammon, the intricacies and care of a computer and how to copy and paste if I needed to. I hope I managed to pass on a few things on to him too. Our families, he and I will be meeting soon to enjoy some sightseeing, backgammon, and a meal or two. With that long-awaited get-together come a couple of added pluses. First, we will be able to have a conversation with one another without typing it or getting disconnected. Second, and the best part, is actually seeing the person who has been sharing the suffering, laughing, arguing, hurting, encouraging and comforting with you for some time in a very special friendship. Is it worth the uncertainty of living with MS? LOL! Not by a long shot. It just makes a lot of the days living with it a little easier.