Do you remember“The Monster at the End of this Book”,where the loveable Grover was afraid to turn each page of the book? If so, you’ll recall that he was afraid of the monster that was supposed to be behind each and every page. It turned out that his fear was irrational because he was the monster at the end of the book. It’s been a favorite book of mine since childhood and well into adulthood and it’s only fitting that I now work for a PBS station. In fact, my teenaged/young-adult-aged step children still love to listen to their dad read the story. Of course, Grover and most of the other Muppets live in my hubby’s body, so he’s able to tell the story with great authenticity.
We, with M.S., already have identified our personal M on S ters. I’m no longer afraid to turn some of the pages of my life, worried about what’s around each corner. I’ve been diagnosed, there’s a name and an explanation to my disease, and like Grover, my irrational fears have been erased. Sure, the unknowns and unpredictability of the disease are still frightening, but my monster has a name. Well, at least this particular M on S ter. I still have a few others living in my closet and under my bed.
What’s making me nervous about turning the pages these days is my financial future. And, this nervousness directly relates back to having M.S. I had a plan in place, for 2008, to start – really start – preparing for the future, so that I’d actually be able to retire someday. (My financial guru cousin is surely rolling his eyes as he reads this article). Sure, I have a small 401(k), and some decent assets, but they’re nothing compared to our debt. I wanted to start paying down bills and saving for a fun, vacation-filled future, free of work and worries (some 20 or so years from now). Then, the page turned and my own, personal Grover arrived. And, the plan changed. If you’ve read about mybaby steps towards reinvention, you’ll realize this wasn’t an easy thing for me. I had a plan, it was ready to go, and I had no control over the change that took place.
I now realize that I need to step up the bill paying, step up the savings plan, stop spending, and redefine my financial fitness for a future with Multiple Sclerosis, instead of planning for lavish trips to Italy. I’m not prepared – not in any way, shape, or form. But, they say that admitting your problem is the first step in making a change. So, today, I’m launching Phase II of Reinvention – Financial Fitness in the Face of an M.S. Future. (Great alliteration there for a person with sparkles on her brain, don’t you think)?
Why is financial fitness so important with M.S.? I’m healthy –physically and mentally – enough right now to continue with my busy professional life. I work two jobs and I’m still handling both just fine. I anticipate being able to do so for many more years. But, what happens years from now if my disability worsens? What if I can’t work at the level to which I’ve become accustomed? Sure there’sSSDI(Social Security Disability Insurance), but it’s difficult to obtain and only pays you 60% of your salary. So many M.S. patients can’t even get approved for SSDI because they aren’t “completely” disabled, but they also can’t continue working full-time positions. So, what do they do? They are forced to leave full time work (often leaving medical benefits behind) and they take part time positions. And, then, when they are finally able to be awarded SSDI, the 60% is calculated based on their part-time wages, not the healthier, full-time salary that they may have carried for decades. That’s a pretty scary monster. What’s even worse is that even once an M.S. patient is approved for SSDI, they must wait two, long years to receive any medical or prescription coverage through Medicare. That means a) they go without medical and prescription benefits for two years or b) they buy private medical insurance utilizing that severely diminished income. Now, won’t you agree that’s a scary page to turn?
One way I deal with my fears is to try to do something about them. In this case, I need a plan. I need to modify the save-for-fun-retirement plan into a Financial Fitness for a Future with M.S. plan. I’ve been reading a great publication from NMSS called:“Adapting: Financial Planning for a Life with Multiple Sclerosis.” I’ve made a written plan. Now, I just need to fully put it into action.
Since I’ve alreadycome of the closet publiclyabout my struggles with my religious beliefs, as well as my opinions on a very controversial political and moral issue, I’m prepared to do the same regarding my personal addiction. Today marks day 22 of me being clean and sober. No, not from drugs or alcohol, but rather from credit cards. Twenty-two, long, hard days without my buddies Visa and Mastercard. A slew of these and other debts are already paid-in-full and several more will be done by the end of the year. It hasn’t been easy. I love to shop. I love to buy useless things. I love to order take-out. I must have ten pairs of black pants that all look relatively the same. I’ve been ridiculous and irresponsible and it stops today. Well, it stopped 22 days ago.
I don’t want to be afraid of turning any of the pages in my life. A little financial security may help that dream become a reality. If you haven’t enjoyed a good read of Grover’s story recently, do revisit the book. Then think about why you’re afraid to turn the pages of your life. Of course you know what I’m going to say next. Do something about it. Reinvent yourself.
Note to readers: On Tuesday, Diane (one of my readers) commented that referring to M.S. as the “ M on S ter” was scary to her. Diane’s right. Since we’ve put a fun and positive spin to all things on Sunshine and Moonlight, I’ve decided to do the same in this instance. M on S ter is out and Grover is in. Grover can be representative of the “monster”, but in a furry and loveable way. People who don’t already think I’m nuts with Sunshine, Moonlight, spots, sparkles, andLiebestropfchen, will certainly vote me into therapy for this one. Diane: thanks for the gentle reminder that even with our simple words – I.A.R.