Today I joined World MS Day as well as E-MS Advocacy Day, North Carolina (on Facebook). By joining these groups I have committed to raise awareness for Multiple Sclerosis through my blog, Facebook, & Twitter (you can follow me at #joahaskell). I have also committed to sending emails to NC officials to raise awareness and to share with them the concerns that people with MS have about employment. When you have MS there are plenty of things to consider.
Over 2,000,000 people in the world are currently living with Multiple Sclerosis, 400,000 Americans live with MS and 10,000 North Carolinians live with MS. According to a recent survey of NC activists, 71.6% of people say that MS has mainly impacted their employment. According to British Journal of Occupational Therapy 71.3% of patients with progressive MS and 65.8% of patients with relapsing remitting MS are unemployed. (I have relapsing remitting MS). They also found that physical barriers are the reason for giving up work for 44.2% of people living with MS and that Fatigue is the most common factor associated with giving up work for people living with MS.
Ok so those are the statistics...here is my reality. I am currently employed by the Haskell family. I am on call 24/7. I am a teacher, nurse (injections and all), chef and short order cook, community organizer (there are 5 of us in this active community along with canine who also has a schedule to keep), maid, seamstress, painter, chauffeur and gardener. In my "spare time" I volunteer in both my older daughters classrooms with centers and character education lessons. I also volunteer as the current VP of Hospitality for the HSES PTA. All of this happens within a 1-2 mile radius of my home. My youngest daughter will be entering kindergarten in July. I am thinking of taking the summer to get things in order and then I may start looking for a career outside the home.
Unlike 3 years ago when I was working from home 20 hours a week as a research consultant for an executive recruiting firm or 10 years ago when I was the director of the professional search division of a staffing firm or even 15 years ago when I was managing an office as a recruiter for professional services, I now have MS. Since I was diagnosed in Dec/Jan I have had at least 3 separate relapses where for at least a week and up to 3 weeks I have been down and out. Physically fatigued and aching with pain...not a dull pain (that is every day) I am talking about serious debilitating pain.
How does one go about finding a job, never mind a career when they have a disease that is completely unpredictable with chronic pain? You can't really go into an interview and divulge your complete medical history, nor can you really "hide" the fact that you have this disease. Ms is tricky. It can hide and lay dormant in some. In others it rears it's ugly head daily. For most people we are just waiting for that other shoe to drop.
For me, I feel like this disease has the ability to take away so much from me...if I let it. I was talking with my friend Diane this morning. After telling her I was on day three if feeling like I was out of the dark tunnel I told her that I am afraid to feel good. I am afraid to get my hopes up because I could turn around and in an hour need to be in bed. She encouraged me by telling me that I could not live that way. I had to hold onto the good days and not let the thought of a bad day creep in. (Diane's husband has a rare form of cancer and has just been given the thumbs up from his last follow up. She reminds me that his cancer could come back at anytime, but if she lives with that thought constantly in the back of her mind she loses what she has today). My friend Holly lost her dad to cancer (it will be 2 years is August). Through out the entire ordeal she reminded herself and all of us supporting her to not let what could happen tomorrow ruin today. And of course I cannot forget my brother's quote to me right after being diagnosed "worrying is preparing to fail".
All of this encouragement and support along with my faith that God is in control helps me to not worry or dwell. Life is too short to worry about what might be, instead of knowing what today brings. So if I get a "job" or start up my career after Jackie goes to school full time great. If not, I know that there are great things ahead of me regardless. We only get one life...with or without MS we need to make the best of it.
One of my favorite quotes is by Henry David Thoreau " Go confidently in the direction of your dreams. LIVE the life you have imagined."