Choices faced by a woman with chronic illness and chronic pain lead to dependence.
|The Choices We Make
I recently made a decision that will result in many changes in my life. Like many decisions I have mixed emotions about it, but ultimately I am happy I made it and look forward to implementing it. But first, a little background;
I grew up in a large family on Long Island, New York, a real suburban area with little to no public transportation. On Long Island you drive wherever you want or need to go, and that’s what I did from the time I was 16, in 1967, until 1998, when I could no longer drive because of the vision and mobility problems I had as a result of Multiple Sclerosis.
In 1994 it became clear that my life was going to have to change. I needed to make some difficult decisions. Afterhaving several major seizures while at work I knew that I could no longer fulfill the requirements of my position, which at the time was VP of a large university in New Jersey. It also became obvious that I could no longer drive. I was experiencing vision and mobility losses and I had to make these difficult decisions now rather than have someone make them for me sometime in the future, no more procrastination.
Changing jobs and no longer driving affected my lifestyle and the rest of my life more than I ever could have predicted. I accepted a VP position at a small professional school in Manhattan, where I was able to perform the tasks for 4 more years before once again my body began to wave the flag of defeat. My body began to effectively shut down completely almost every day, and after I was taken to the hospital by ambulance with my arms and legs frozen with spasticity, it became very clear I had to stop working, totally, not go find another college or institution I could work at. I could not push my body any further and still expect it to serve me in any way at all and I was not ready to give up on life completely..
I moved into Manhattan, where I could maintain my independence by using the public transportation system. I sold my house on LI and my co-op in New Jersey and rented a much smaller apartment in New York City. Having never lived in a city I didn’t know what to expect, but I was pleasantly surprised at the warmth and ease with which I was accepted.
I had been living with a spine condition since I was 13 years old, for which I had my 4th surgery in 1994 and from which I still live in terrible pain. I was told I probably had Multiple Sclerosis as far back as 1980, when the surgeon who operated then told me that the nerves coming from my spine had no myelin, the protective wrapping around the nerves which is eaten away when you have MS. It didn’t begin to progress until the early 1990’s, and I was officially diagnosed in 1996.. So here I was, living in a new place, with continually increasing pain and an increasing number of MS symptoms that began to flare up.
I mentioned earlier that I came from a large, suburban family—a family I used to tease that they did not need a Passport to come into Manhattan. When we were growing up it was very rare to come into Manhattan, and for some people still living in Suffolk County, NY, it was still a rare occasion. I could not have made it through my youth and my early adulthood without the love, support, and assistance of my parents, sisters, brother, cousins, aunts and dear friends. You will read more about this later but any story about the changes I made in my life that did not at least recognize how important these people were in my life would be incomplete. I would not have my graduate degree if my father didn't come over and stay with Jennifer one evening a week so I could take a class. My daughter would have never gone camping or skiing if my siblings didn't take her alone with their family on trips my body would not handle well, if at all. I can only laugh if I think of what would happen if I tried to even stand up on skis. Once I took my daughter tent camping, and I could hardly move for the next few days. But I digress, you will learn more about this later. It is just important that you know and remember that I didn't do this alone, and I don't think anyone can.
There were decisions that needed to be made and I made them. I don’t mean to imply that all these decisions were easy, in fact the decision to leave work was one of the most difficult decisions I have ever made. And the consequences were great: my salary is less than half of what it was in 1998, which is reflected in my housing, my wardrobe, and lack of vacations to name a few. My inability to drive made, and still makes, it difficult for me to visit friends and family, especially my mother, who was aging and who lived outside of NYC. It also affected my self-esteem since I lost a good deal of independence and autonomy.
I felt shame and failure, but the worst part was that I let my daughter and myself down because I could no longer work through the pain and continue to achieve my goals. My daughter saw me achieve many things in my career and personal life in spite of my pain, and now I could no longer do that. She insists that she doesn’t recognize any failures in me, however it was my perception that affected me.
That was in 1998, and it is now 2011 (when I first wrote this but it is now 2015—see below) and during the last few weeks I have made another major life changing decision and will again face many consequences. I have decided to move back to Long Island! This is a major change for me and while I am thrilled I will live ten minutes from my daughter and her family and will get to see my two Grandsons much more frequently, I will also have the same transportation problems I moved to Manhattan to solve. I will keep you posted in future articles on how this all works out, but first I have to get the mortgage approved for the condo I am buying.
We all face major decisions as we age, reach retirement age, and realize our once busy nest is empty and we are alone. Those decisions can be difficult enough, but factor in that you are 20 years younger than most retirees, have debilitating pain and major mobility and vision problems and you realize that some of these decisions are taken out of your hands and you are now left to make the most of them. I am anxious to see how this one turns out.
Started in 2011, finished in 2015.