In disclosing, you’re also exposing.
You’ve got a secret. It’s not necessarily scandalous, but it is life-changing.
If you have multiple sclerosis, you know it’s a full-time, predictably unpredictable occupation; Without a paycheck, but with plenty of bills.
As a public educator, I already owned a wealth of stress. I loved my job and miss it terribly. My mind had several productive years reserved when my diagnosis made the ultimate decision to take early retirement and seek a disability check to compensate for reduced financial income. The decision to retire after only 33 years of service wasn’t easy and when it finally happened, I cried every morning for the first two years.
My two biggest MonSter issues were and remain to be are foot drop and incontinence.
Even with a girl’s restroom next door to my classroom, I slowly, over the years between diagnosis and retirement, began having serious potty problems.
Laughter and excited chatter bounced around the spacious hallways of Miller Junior High School. Spirit Week offered the perfect opportunity to be silly and laugh at one another while celebrating our football team’s impending championship game in a few hours.
I loved this school, the second of my career. The grade level, the administration, the advanced expectations, the staff, the old building, the location, the cafeteria… It was the best a teacher could get.
Standing near the wall to avoid the change of class rush, I chit-chatted with the school guidance counselor until the student rush dissipated. That’s when the tingling began, its threat more urgent than normal. There was no hope of me reaching the faculty lounge mere feet away.
Even crossing my legs and performing an intense Kagal didn’t deter the sudden and constant stream of urine
Thank goodness the halls were clear, leaving me with a private moment of humiliation.
I waded my yellow river to the lounge and retrieved a mop, all the while calculating how quickly I could clean up my mess, drive the ten minutes home, change clothes, and return to school before my next class.
I did it. Of course, I did. My new reality had landed.
When MJHS closed its doors two years later, I gratefully accepted an invitation to teach in my hometown, where I enjoyed a few more years of employment until the MonSter forced its hand with greater authority.
The first year at a new school proved more stressful than expected, which exasperated my MS. The students were sill my beloved eighth graders but different from my former clients in social, educational, and maturity levels. These kids were not the young teens of privilege that inhabited the city school. This should not have been an issue. These were the kids of the kids I had grown up with. They were my contemporaries, but that didn’t make the change any easier. I might have privately disgraced myself in the main hallway of MJHS, but this frank, more caustic atmosphere of my new assignment. I might have had fewer students and smaller class sizes, but the population was far more challenging. (Don’t get me started on the educational philosophy of 7-8 junior high schools versus 5–8 middle schools. It’s a lot like multiple sclerosis. You don’t get it unless you get it.) My symptoms really kicked in at this point. It matters not whether I blame it on the MonSter’s age or the accumulated stress. The challenge was REAL.
The day I had to choose to sit on the trash can or piss myself in front of a class, I knew I was in trouble. That girl's restroom a few feet away was more than a few too many feet away. When I expressed this issue to a fellow teacher friend, she immediately urged me to call her when I needed this immediate relief. How could I explain that by the time I reached the classroom phone, it was too late? MS incontinence is sudden. It’s immediate and beyond urgent. And it’s not a trickle. A Depends or adult diaper is NOT the solution.
And we’re just talking about pee. I will not further gross you out.
When I welcomed a very helpful AFO into my life (after retirement), the cleanup became even more time-consuming because incontinence with a AFO requires not only removing the sodden undergarments and trousers but also demands new shoes, and socks, underwear, and a disinfected AFO.
No, I didn’t entertain a medication for incontinence before retirement. I was a teacher, probably one of the most important jobs on the planet. I had no money for more disease meds. My personal pharm was BIG pharm-ed out.
This school teacher had a lesson to learn. I had to leave my beloved job, apply for disability, and keep my retirement fund fingers crossed.
Not only could I trust my plumbing, but foot drop also made any quick/unexpected, possibly life-saving movements impossible and even dangerous. My days of fire drills and school dances were over. How could I do an acceptable job of doing my job if I constantly worried about falls and “accidents”?
It didn’t help that the new administration was not supportive. He might not have got it, but I did. The writing was on the wall.
Fortunately, my condition was a known fact, and the initial disclosure of my disease was received with compassion and concern. Unfortunately, my exit from public education wasn’t met with as much kindness.
So, how does one announce the condition of chronic disease?
“I continued working with my company for four years after diagnosis and finally had to quit. It’s been an absolute nightmare and two years later, I’m still battling for disability.”
That’s how Anna Stokes described how multiple sclerosis has affected her productivity and ultimately her life in the workplace since she received a diagnosis in 2012.
Multiple Sclerosis and Job Difficulties
Multiple sclerosis can reduce productivity and affect cognitive abilities, forcing people with MS to cut back their…
I was much more fortunate in my quest for a disability assignment. All I heard were nightmarish experiences, which encouraged me to do it right the first time. My application resembled the great American novel by the time I submitted it. Easily forty pages, I often tease that the reviewer got weary of reading and granted the request in lieu of being subjected to further rhetoric. Whether an accurate analogy, it thrilled me to gain a top amount of monthly disability payments.
What to include in a disability application:
- ALL (and I mean ALL) medical documentation of an existing cause of disability
- A THOROUGH list of disabilities, regardless of personal pride. HUMBLE yourself.
- Be graphic if necessary.
- Enlist all forms of professional justifications: physical therapists, neurologists, emotional counselors, general practitioners, support group narrative, colleague documentation, association recommendations, detailed lists of physical impairments, and work-related handicaps. Tell it all!
- Call in favors when owed.
- Be ruthless. No one is a better self-advocate than you.
- Documented studies and research results.
- Before and after images.
- Personal activity/progress/digression logs.
You MUST dust off the creativity and grovel without begging.
Receiving disability is important and well worth the effort, so forget about the thousands of system abusers. This is about YOU. YOU need to remember that.
Upon receiving your disability check, use it for its purpose and when there is extra, don’t you dare neglect your spiritual well-being. Treat yourself to ice cream. Purchase that new sweater. Allow for time to breathe. You can’t do it all, so don’t try.
How to Be Your Own Advocate When You Have Multiple Sclerosis
When you speak up or act on behalf of your rights and well-being, you're self-advocating. If you have multiple…
Points to Ponder:
Right now I’m having amnesia and déjà vu at the same time. I think I’ve forgotten this before. ― Steven Wright
Your memory is a monster; you forget — it doesn’t. It simply files things away. It keeps things for you, or hides things from you — and summons them to your recall with will of its own. You think you have a memory; but it has you! ― John Irving
Forbidden to remember, terrified to forget; it was a hard line to walk. ― Stephenie Meyer
Scars have the strange power to remind us that our past is real. ― Cormac McCarthy
One of the keys to happiness is a bad memory. ― Rita Mae Brown
People have an annoying habit of remembering things they shouldn’t. ― Christopher Paolini
If you wish to forget anything on the spot, make a note that this thing is to be remembered. ― Edgar Allan Poe
When God takes out the trash, don’t go digging back through it. Trust Him. ― Amaka Imani Nkosazana
The trick was forgetting about what she had lost… and learning to go on with what she had left. ― Lisa Kleypas
The only thing faster than the speed of thought is the speed of forgetfulness. Good thing we have other people to help us remember. ― Vera Nazarian
People always talk about how hard it can be to remember things — where they left their keys or the name of an acquaintance — but no one ever talks about how much effort we put into forgetting. I am exhausted from the effort to forget… There are things that have to be forgotten if you want to go on living. ― Stephen Carpenter
A person living with MS may qualify for short-term or long-term disability or SSDI. Stop feeling like a lesser human being for seeking assistance. I understand the stigma. Been there, done that. Guess what? As a former employee, you earned this.
Have a great day,
Lisa, Lady With the Cane