Friday, June 01, 2012

An Ever Changing Life

By Denise Coleman Monday, August 24, 2009

Imagine overcoming many challenges in life to obtain your college degree and begin and build your career to a level of success, only to have to give it all up at an early age because your body won’t work.  Many of you reading this have done just this, as have I.  And the changes in my life that followed have been difficult and at times depressing, but as with everything, we find a way to keep on going and when possible continue to persevere.  I am still working on the persevere part and am trying to contribute to society in whatever small, but productive, way I can.  Here’s a little of how this all happened.

 I didn’t go to college until I was 23, divorced, on welfare and the mother of a two-year old little girl.  I had already had two back surgeries and lived with chronic pain, so even doing this much was a lot.  In my last semester I was hospitalized for several weeks with myocarditis, a virus in the lining of the heart, so I had to take incompletes in many of my classes and finish over the summer of 1977.

 I began my career in the university’s administration and did my graduate work at night, obtaining my Master’s Degree in 1982. I worked hard and continued to move up in administrative jobs in NY area based colleges and universities, although I had another back surgery in 1980 and continued to live with pain in my back and legs.  After this surgery, the surgeon told me there was no myelin around the nerves coming from my spine and that I probably had Multiple Sclerosis (MS).  There were no MRIs at the time and I remember the orthopedic surgeon telling me with a laugh that the only way to give me a definite diagnosis would be to look at my brain and the only way he knew how to do this was to do an autopsy.  We agreed to hold off on that procedure and leave it with probable MS. 

 In1991, I was appointed vice president of a large university.  My daughter had just started college and I felt I had finally made it; I was making a good salary and had a position that allowed me to use my skills and have the autonomy to run my division.  Unfortunately, 3 years later I was diagnosed with spinal instability and in order to keep my spine together I had an anterior/posterior fusion and I now have rods and screws holding a few vertebra together.

But I continued to move forward and knowing that I needed to cut back on my driving and heavy schedule I moved to a vice presidential position in a smaller, professional college a few months after the surgery; in fact I was still encased in a large brace and had to use forearm crutches to walk.

In 1996, however, I was having trouble with my eyesight, numbness in my arms and extreme fatigue.  Even though my schedule was not quite as demanding as it had been in the large university, I still had to be at meetings in different parts of the city and work many evenings and weekends, which began to get more and more difficult for me to do.  I went back to the neurologist who had diagnosed the spinal instability and told him what I was experiencing.  For the first time a doctor asked if anyone had ever looked at my brain.  I told him what the orthopedic surgeon said back in 1980 and he immediately sent me for a brain MRI, which showed several demyelinating lesions in my brain.  Of course there will always be the question of how much is from demyelinating and how much from my spine, but I was given the formal diagnosis of MS.

8/24/09 4:31pm

Denise,

 

You wrote a very powerful, heart-felt article.  I can invision you as an advocate.  I was just appointed an advocate for the National Patient Advocate Foundation.  I have not decided as of yet, how far I will go as an advocate.  Besides being a person with chronic intractable pain, I am also the lone caregiver for a gentleman with Parkinson's.  My days are full.  However, I know I can help at some level.

 

I would like to talk to you privately, if you feel comfortable with that, about being an advocate.

 

Huggles,

Annie

8/27/09 2:38pm

Thank you for commenting on my Post and for sharing your interest in advocacy.  I wrote a Post a few months ago about my volunteer work, including advocacy, with the Power Over Pain Action Network (POPAN) and I suggest that you read that if you haven't already to learn a little more about my work. Also go to the American Pain Foundation website, www.painfoundation.org and take the Advocacy Survey and review some of the information on that site.  On the left hand side of the site you will see an icon to click for POPAN, which is the Foundation's grassroots advocacy network that I am a member of and it is an excellent source of information.  

I would be happy to communicate with you about advocacy and I guess the best way to do that is for you to write me a private message, which I believe you can do by going to my home page and click on Message.  Advocacy is very important, especially now when the federal and state governments and agencies such as the FDA are proposing policies that could limit or even ban some of the more effective medications for treating pain.  There are many ways a person can advocate, however one thing to remember is that you need to take care of yourself so you have to pace yourself.

I look forward to hearing from you.  Best wishes, Denise

8/24/09 4:57pm

I wrote this wrong the first time and it wasn't saved. Let me try again.

I am amazed by your determination and strength. The saying about life giving us lemons doesn't express it well enough for you. You've been given a lemon grove. But you can't keep a good woman down. You've been through such hell yet there's this indominatible spirit that, like the phoenix, keeps you rising. Whether you make the lemonade or it just rains its sticky self on you, it's there. Something flattens you. And you get back up...on your scooter. You could be rolling down the streets of NY screaming obscenities at people in bitterness. But you're not. There's too much light and hope in you no matter how dark it feels. When I feel pinned in this, uh, blessed bed, for all but a few hours a day, I think of you. Your story helps me put one foot in front of the other and lead as meaningful of a life as I can. You know all about how pain can be a force for change and good. You've been doing that with your life. Even when you're a voice in the wilderness talking, with courage, of how damn hard it is. Even then, the light shows. Your story is your most powerful gift in an arsenal of powerful gifts. Use it. Tell it. We're out here and we need it.

8/27/09 2:57pm

I don't know what to say, I am in tears from reading your comment to my Post.  Thank you for all the wonderful things you say, although I don't deserve all the praise you bestow upon me or my writing. I have met so many strong people who live with pain and illness and I hope that through my writing I can demonstrate my support and appreciation for all they live with; I believe that those of us who share the experience of chronic pain are who can fully understand what it takes to get through a day. 

 

Having said that I do appreciate that you enjoy my writing and that perhaps I can bring something positive into your life through my writing.  I recognize my Blessings in life; especially that my MS and pain haven't disabled me faster and that I am still able to live independently. I decided to begin writing about my experiences because I was sure I wasn't meant to spend all these years just being in pain. Somewhere inside me I knew that I might be able to bring something positive to even a few people through my writing and your comments make me believe that perhaps I am right. I cannot tell you how happy I am to hear that you enjoy my Posts and feel that I should continue to write.  I hope that I continue to live up to your expectations. I am working on a book right now and hope that one day it will be published. Thanks again. Denise

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By Denise Coleman— Last Modified: 09/03/10, First Published: 08/24/09