Thursday, June 12, 2008

Saying goodbye to your job ... Finding a new sense of purpose

One of the most difficult times in my life with digestive motility disease was when I had to accept and come to terms with the fact that I could no longer work. This came as a big blow to me as I absolutely loved the work that I was trained to do.

Many people with motility diseases may come to this crossroads in their lives. The emotions that transpire can be overwhelming. Accepting that the illness is real ... it is not going away ... that you will be giving up a major part of who you are and what you do ... that you will no longer be able to contribute financially or physically to many of the things that you once could ... and you must say goodbye not only to a job, but to a life that you once had while entering a new phase of your life riddled with uncertainties, illness, and all that goes with it.

I was a teacher and musician. When the illness invaded my life, I struggled to attend my classes and hide how I was really feeling and how my body was betraying me. I concertized, but it was becoming more and more difficult. Soon, the symptoms overtook the battle and I was forced to resign from all my positions. At one school system where I taught, they refused my resignation. I was told that they would put the position on hold and that I was always welcome back when I got better. This gave me hope. I was brightened by the prospect. But the light eventually dimmed and as I spent more hours in the bathroom, more hours in pain, more hours in despair, reality gave way to hope and I accepted the fact that I was no longer going back.

Life changed. Now, I contributed to the growing debt of our household because of all the medical bills. Now, I not only was battling illness, but battling feelings of guilt because of the debt and the impact that my illness was having on my husband and family.

These were difficult times both physically and mentally. Through the years, however, wisdom has replaced all the old feelings. I understand that all that I once did actually prepared me for what I do now. I still teach ... but I teach a different subject ... I perform, but to a different audience.

I can recall years ago a voice crying on the other end of the phone. Her name was Carol, she was a nurse and she also had chronic intestinal pseudo-obstruction like me. She was sobbing because she had to leave the job she loved ... nursing ... helping others ... all because of her illness. She worried that her sense of purpose would be lost. After years of learning, living and experiencing illness, I remember telling her that I understood how difficult it would be for her. However, she would still be using the same skills ... just in a different way. She would now be helping others with digestive motility diseases and disorders. Her tears stopped, and she suddenly felt a sense of peace. That was such a monumental moment in both our lives.

Leaving a job that you love because of digestive motility disease is not easy. You may experience anger, sadness, emptiness, loneliness and even depression. But let me reassure you that your sense of purpose becomes even more important. I truly believe that all of us who suffer from digestive motility diseases and disorders have a purpose of educating others and helping those in need. I can't think of anything more rewarding.

Think of it as a job change. A change in life ... a chance to share your voice with others who are new to the world of illness or even to veterans like myself who have been traveling similar journeys along the way.


mphotographer said...

Hello my friend-
What an eloquent, beautiful blog post you wrote...thank you so much for sharing what has happened in your life. What instrument did you play?

You have sure warmed my heart and given me hope for the future...whatever that future may be. The unknown can be so unsettling. However, taking it one day at a time (one moment at a time as you know) is the only way we can do it and get through it. I am so glad you have found a new purpose in life-you have helped a great many people with providing this site and that has made a huge impact in the world with people that have motility disorders or loved ones that do. We love you and thank you from the bottom of our hearts!! Mariann, yer forever pal

Millie said...

Mary-Angela and Mariann,
I am so upset because I am having increasing trouble with constipation,no urge to go. 2 years ago, a gastro in Philadelphia threatened me with an ileostomy. What is pseudo obstruction? How bad can it get, and what are the treatments?
I need to contact you. I am barely able to eat or drink. Barely able to pass much of anything, and losing weight.
Even with taking miralax,etc., not much results.
I am so afraid.
Have you ever had an obstruction or known of anyone with ostomy due to motility issues?

Digestive Motility said...

Hello my wonderful friend Mariann,

I am so humbled by your kind words and also by the stories of so many others suffering from digestive motility disease such as yourself. It's people like you who are my inspiration. In deed it is truly an honor to be able to help others through the Association of Gastrointestinal Motility Disorders, Inc. (AGMD).

It was great talking with you last week! You are so remarkable. I love your spirit of hope and survival.

Thank you again for bringing sunshine to my heart Mariann!

Digestive Motility said...

Dear Millie,

I am so sorry to learn about the difficulties that you are going through. My heart goes out to you.

Please do contact me. I can be reached via e-mail at or by phone at 781-275-1300.

I can certainly understand much of what you are experiencing. It's important to know that you are not alone and I am here to help!

mphotographer said...

Good Morning mi amiga Mary-Angela!
Thank you for your warm comments. It always makes my day when we can talk "live" :-)). I so hope that you are feeling better than you did and that you are having more "good moments". I think of you daily and send you healing thoughts my friend...I so wish I was there to give you hugs in person and keep you laughing! You have such a warm, wonderful laugh-it's contagious :-)). Maybe we'll get to meet at the next Symposium next year. That is my dream if I can afford to go and feel up to it.

Thanks for all you do. I am here by your side always-Love, Mariann

Tim S. said...

I can't begin to tell you what a relief it was in finding your blog and your support site. My name is Tim Shockley and I really appeciate you responding to my first email.I have CIP and dumping syndrome along with some of the other symtoms. I had my second stomach surgery in 1979 which left me with the dumping. For many years I just "lived" with it, never knowing if when I ate I would get sick or not. Over the past 6 years The dumping became more violent and I would have to lay on the bathroom floor because my hads and feet would go into cramps. I would lower myself off the toilet onto the floor waiting for the next "wave", then pull myself back onto the toilet. It got to where I couldn't eat or get out of bed the next day because my gut was on fire with pain and my calf muscles wouldn't allow me to walk except from one room to another because they were so week from te cramping. Over the past 3 years I have developed what sounds like CIP.Weight loss, constant pain, even more when I eat as the food makes its way through my GI track. I will go for several days of my pancreas over reacting and having everything flush straight through my system. Then I will go for several days where nothing moves all the way through, which causes more pain. I think I have a good GI Doctor now. He calls my GI stuff "Generalized Motilty Disorder". He has tried (as have other Doctors over the years) numerous meds, diets changes, etc., but nothing helps. He has sent me to a pain management Doctor that didn't work out because I have an extremely high tolerance to pain meds. He tried a 50mg fentanyl patch that didn't even phase the pain. He then said he couldn't help me. So I am going to go to a new PM Doctor that I hope will realize that it is going to take a higher dose or something else. My GI doctor has said that about all we can do is try and make me a little more comfortable(pain meds).He would like me to try to go to Dallas to see a Dr. Larry Schilar(Ithink that is howit is spelled) at the Baylor College of Medicine. Evidently this doctor has done a lot of research on Motility disorders.
Just seeing my symtoms on your support website gave me hope and relieved the feeling that I was crazy. I look forward to talking to you someday. THANK YOU so much for sharing your story and for doing the work you are doing.
Tim Shockley