The 10 Blessings of MS
Recently, I felt like a rock star!
During the 13+ years that I've had multiple sclerosis, life certainly has not been a bed of roses. There have been - and still are, though far less often today - some very dark days. I wouldn't be human if I didn't boo-hoo occasionally about this sucky disease.
But I am here to say that despite the scary name and despite the fact that I do not know how my MS will progress, a corner has been turned. Today, I realize that MS is a blessing in the disguise of a disease. here's why:
1) I am not going to die from MS.
We live a normal lifespan. People die of complications from MS, not the disease itself. This gives me all the incentive I need to take care of myself. Eat right, exercise, reduce stress. When I was in the hospital getting diagnosed and freaking out, I remember thinking, "I guess I really do need to get hit in the head" to start taking better care of myself. Mission accomplished.
In 2000, I was able to reassure my children, who were aged 2 and 9 at the time, that though I didn't know what kind of shape I would be in, I was not going to die. Which is all children care about. They just want you to be there. So what's for dinner, Mom?
2) I lost 13 pounds.
After struggling with my weight for all of my teenage and adult life, the whole issue changed from my looks to my health. I was one of those perennially "on a diet" women, making an annual New Year's Eve resolution to lose 10 or 15 pounds that lasted about 3 days. After my diagnosis, I spent the first year on the "Swank" Diet. Dr. Roy Swank has been treating MS patients since 1977 with an extremely low fat (15 grams saturated fat per day) diet. I thought giving up cheese was going to kill me, but I restricted myself to just one piece of pizza per week. For an Italian, this may be the ultimate sacrifice! I told people I was on the MS diet. I don't recommend it, but it works!
3) My priorities are straight.
I used to be a fairly high stress, competitive perfectionist. Today, I am so much more relaxed. I talk about the tyranny of perfectionism. I teach my children when faced with a situation that makes them tense, to ask, "What's the worst thing that can happen?" Usually something that feels like a crisis in the moment has little if any impact in 6 months. I've learned that slow is fast enough!
As a mother, worry is part of my job description and I've certainly done my share! But my children, who today are 16 and 23, are old enough now to take a lot of responsibility for themselves. Teenagers and young adults are not interested in the "wisdom" of age. Telling them anything without being asked is a waste of breath! My daughter is a junior in high school and it is killing me not to hound her about looking for colleges. But she is a smart, talented, beautiful young woman and any school she chooses will be happy to have her. If it is not, it's just not the right fit.
Actions have consequences. We don't do our children any favors by constantly "fixing" things. A parent's job is to guide and to cushion the fall, not to prevent it. If we are smart, we learn from our mistakes.
4) I've learned to be grateful.
Gratitude is the key to a happy life, no matter what one's circumstances. Let's face it, there is no shortage of things in our troubled world about which to be anxious and worried. I have made a different choice. Instead of focusing on my disease and seeing myself as a victim, I choose to be grateful for all the wonderful things in my life: my children, my parents, my siblings, my lifelong friends, my loving dog. An alarming 87% of marriages where one partner has a disability end in divorce and mine was no exception. It was pretty scary on match.com for a while, but today I have a terrific boyfriend who walks my dog, takes me on great vacations, and has read Men Are from Mars, Women Are from Venus - twice!
5) Early Retirement
OK, so it's not the way I planned, and I do miss the daily gossip with co-workers who are obsessed with the same stuff that gets me going. But an excellent corporate disability policy will make sure I don't starve. I received invaluable advice when I began my second broadcasting job at a tiny radio station in Owego, New York. The business manager explained to my 22 year old ears that everyone thinks about Life Insurance, but as a young, single person w/ no dependents, it's not the most important insurance to have. Your chances of dying are very small and anyway life insurance is for your heirs. When you are single you don't have any. On the other hand, the chance of suffering a disability from an accident (or an unexpected malady) is much more likely. Disability insurance takes care of you.
30 years ago, disability insurance was cheap. Today, not so much, but no matter the cost, you must have it. At every job where it was available, I signed up as soon as I could, on the wise advice of that business manager back in Owego. After I was diagnosed, I became the biggest unpaid salesperson for my companies disability insurance. You just never know, and you need to protect yourself.
6) Dr. Brian Apatoff
I am very lucky to have been Dr. Apatoff's patient almost from the very beginning. I spent 9 frightening days in the hospital while doctors performed every test imaginable to confirm the MS diagnosis. On day 8 or 9, the neurologist who I had seen initially came to my bedside and said, "I'd be happy to be your neurologist, but if you want to see someone who really sees a lot of MS patients, you should see Dr. Apatoff." First of all, I am eternally grateful that the original neurologist recognized his limitations. How many people, especially Harvard trained doctors, are humble enough to do that?
Many MS patients go through a series of doctors, either because their neurologist isn't an MS specialist and gives bad advice or because they simply don't like what the physician tells them about this wacky disease.
Today, I am the president of the Dr. Apatoff fan club! This man has seen me through months of rehab to regain the use of my dominant right hand. When I was crying in his office about my family woes, this Harvard-trained PhD, routinely considered one of the Best Doctors in New York, shared his personal story about being the youngest of 3 brothers and being seen as the failure in his family. When I complained about a loss of interest in sex, he spoke seriously and professionally about the use of a vibrator and wrote me a prescription for Viagra! Turned out the problem was the ex-husband, not my MS, but the point is Dr. Apatoff is a good listener, a brilliant clinician and a supportive human being. I am so grateful to have him at the head of my personal Team MS!
There are so many ways that Dr. Apatoff has helped me to cope w/MS, but this may be my favorite:
Last year, my friend Sharon was directing an off-off Broadway production of My Fair Lady. My then 15 year old daughter auditioned, was offered a part in the chorus but decided not to take it. So Sharon asked if I would like to be in the chorus. Honestly, had it been anything but My Fair Lady I might have turned her down, but this show is so seductive I just couldn't.
Old habits die hard, and office visits w/ Dr. Apatoff are like work meetings. I go with 2 copies of my computer generated list of symptoms, questions & drugs. Dr. Apatoff says he wishes all of his patients were so organized. Then I gave him the flyer for My Fair Lady, as a way of demonstrating that I am staying active and doing things I enjoy, which is important for those of us w/ MS.
A few weeks later, Brian Apatoff, his wife(also a doctor), his daughter and his daughter's friend all came to see me in the show! Turns out "On the Street Where you Live" was the song Brian and his wife danced to at their wedding!
7) Real Family, Real Friends
You learn very quickly who is there for you and who is not, and this can be painful initially. We need to learn how to ask for help. The people who love you want to help, but often don't know how. For a long time, I was filled with pride and foolishly assumed people would know what I needed. I was wrong. Ask someone to accompany you to the doctor, to pick up your kids from school, to get your computer fixed, etc.etc. It's time to give up the SuperWoman fantasy and to let your peeps in!
8) Disability Privileges & Discounts
The MTA doesn't want to give it to you, but after a visit to my state assemblyman's office I got a half-price MetroCard. The DOT doesn't want to give it to you, but after a physical at Bellevue hospital I got a NYC Disability Parking Permit. Amtrak gives a disability discount on all tickets. National parks, NYS parks and many places that give Senior discounts will also extend them to the disabled, but you have to ask. I fought my coop for 4 years to get it, but now I have a washer dryer in my apartment. Disneyland will move you to the front in line!
Multiple Sclerosis is one of the very frustrating neurological diseases whose symptoms are not always visible. Fatigue and incontinence come immediately to mind. I have a good friend you would never suspect is blind in one eye and deaf in one ear. If you want to take advantage of the privileges & discounts, you may have to prove that you have a disability. Try to do it with a smile. Remember what your mother told you about catching more flies...
9) Cookie
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Canine Assistants is a wonderful organization started by a woman w/ MS. Jennifer Arnold knows dogs can be trained to detect impending seizures, retrieve medicine for patients, pick things up, open doors, etc. If you have MS, or you do not, I urge you to adopt a dog. As my car magnet says, "Who rescued who?"
10) This blog
For years, I fantasized about starting a blog. I didn't know if I knew how, as I'm not the most tech-savvy person. I know I had lots to say about saving money, among other things, but when you've been out of the traditional workforce for a while, you start to feel irrelevant and insecure. It was a lengthy process, but I hope you appreciate AlmostFreeNY almost as much as I enjoy writing it! Please forward this post to a friend and sign up to receive the blog.
Next time I'll return to my focus on thrift. I've got lots of useful gift-giving ideas.
I want to wish everyone a gratitude filled Happy Thanksgiving and for my Jewish friends a Happy Hanukkah!
Keep calm & carry on....Lori Bores
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