Charla McMillian, 49. Alameda, California
GG: What sort of job did you have before getting sick?
CM: I was (and still am) a Certified Strength and Conditioning Specialist. My chosen, full-time occupation is as a fitness instructor.
GG: What is your disease/disability and how does it specifically stop you from working a full-time job outside of home?
CM: I was recently diagnosed with Multiple Sclerosis. Lesions on my brain and neurological interference of this disease have made me vision impaired and, at times, interferes with proper operation of my left leg, leaving me no longer able to run more than about a half to a full mile before my left leg simply stops operating properly. It appears instead to be palsied and does not allow me to competently cover distance.
GG: What changes did you make in your daily life to help you to continue working?
CM: Although I am now vision-impaired, I am blessed to now have a computer with Zoom Text software and a large print keyboard that goes with it, along with an Enhanced Vision redisplay device for reading regular type.
GG: Do you still encounter any challenges with your profession because of your illness? How did you work around it?
CM: My biggest challenges have to do with simply performing to my known ability physically anymore. It is very difficult facing athletic challenges that have been easy for me and now having them suddenly unattainable.
GG: Do you work alone or with other people? How did you explain your situation to them, or did you have to say anything at all?
CM: At home I work alone. In the fitness boot camp program that I run, I, of course, work with other people, continuing to train them to vastly improved physical conditioning. I have operated this program since 1997 (first in Boston and now in the San Francisco Bay area). Since I have trained most of my clients over the past 17 years, most of them have known me and have seen what I am capable of consistently delivering for a very long time. They are well-trained and very well “indoctrinated” to team focus. I have told my clients of my diagnosis and specific manifestations. They support me and consistently stand by to ensure I remain safe during all activities, to provide my wife and me any needed support through the days should we need it (rides to class as I cannot drive, guidance on the training field in case I miss an obstacle, etc.)
GG: How do you handle necessary benefits like insurance that comes with normal 9-5 jobs? Did you use a spouse’s insurance, a parent’s, or did you use government funding?
CM: I am extremely thankful for my Veterans’ Affairs benefits through which I now receive health care. I am also thankful to be in the San Francisco Bay area. Research and work on MS is state of the art in the Bay area. My neurologist (as well as my ophthalmologist) are actually affiliated with UCSF and volunteer with the VA. Although I am impressed with Obamacare and now believe I might be able to obtain coverage even without military service, I did serve and sincerely thank this country for my benefits, especially healthcare coverage.
GG: What is an average day like for you at your new job?
CM: My days, though still as productive as I have always expected of myself, often contain a few “downers,” moments of recalling what I know I am physically capable of but now lack the perception, balance or neurological cooperation to execute. It requires constant revisiting and re-focus on the support and positive reinforcement with which I am surrounded.
GG: What advice do you have for other patients looking to start a new kind of job that fits around their illness?
CM: Stop and think what your desired tasks actually require and how you can get those tasks done most efficiently. Explain, but do not whine about, your situation. Do not be afraid to ask for a hand, and remain ready to give one. You’re not dead yet. You can still help someone else, and you will look and feel more capable every time you do. Be thankful for what you still have and are capable of. When you wake, or perhaps at a set time in the afternoon, give thanks for those things.