Reinventing Myself with Myasthenia Gravis
Ah, being alive and having the energy to do the things that you want to do! Or at least that's what we see portrayed on TV. But then again, TV shows never truly show the reality of health conditions people live with day-to-day.
In real life, we see people busily going from place to place. Seemingly effortless on their part. Just a couple of years ago I was one of those people.
Each flare worse than the last
Little did I know - the remission I was in was going to end. Although I had not yet been diagnosed with myasthenia gravis, I had had symptoms for years. Just not the normal ones people usually start with.
I had flares (some bad), then remission, with many wrong diagnoses along the way. Each flare seemed to take a little more of my ability away.
Every new flare made the last one look like a cakewalk, leaving me to reinvent myself and find new abilities that I didn't know I had so I could maintain a job.
I used to do a lot of cooking in a hotel restaurant. I planned and prepared meals for 500 people on a lunch buffet while at the same time, cooking orders off the menu.
I also baked bread and fried donuts in a bakery. These ended when I could no longer maintain pace, pick up pans, and had trouble walking.
Then I worked in a factory where all I had to do was stand, push a button, take the parts out, and put them on a shelf. I had to quit that job due to breathing problems when my diaphragm didn't want to work properly again.
At this point I was also unable to see, walk, talk, chew, and swallow due to a flare that lasted for 5 years.
Using the ticket to work program
I went to massage school for a year and took the test to become a licensed massage therapist. I began massage school while still in the flare. I was on disability at the time for an unknown neurological condition. So, I used the ticket to work program to learn a new trade while on disability.
After massage school and while still on disability, I took the job at the local crisis center. There, I worked my way off of disability and continued working there for the next 10 years.
During this time I kept my massage license and stayed active at both jobs to keep my credentials ... until this new flare hit.
Take time to grieve
The most important thing I have learned over the years of reinventing myself and my career is after each flare you have to mourn. It is like mourning a death.
We have our hopes and dreams wrapped up in who we become. When that ends suddenly, just like any other death, we are left wondering where to go and what to do.
You are more than your job
Another thing I've learned: Don't take life so seriously! When you have a chronic illness that flares up when it decides, you realize how very little control you have over life itself. The only control we really have ... is how we choose to react to what's going on.
During a flare, it’s a good time to pamper yourself! Learn something new about yourself or for yourself. Find out who you really are not outside of just the job you do!
Have you made any MG-friendly adaptations to your home?