By Mindy B. Alpert & Andrea S. Kantor
We both live with multiple sclerosis and this is our story. Mindy was diagnosed with MS in 1998, and she has cognitive challenges, as well as other invisible symptoms. As Mindy’s partner since 1999, Andrea lives with MS in a different way, because the disease affects their life together.
Managing as a Team
In 2001, Mindy left a successful career in the financial industry as a result of severe fatigue and her cognitive challenges. She doesn’t always understand what people are saying, and sometimes has to ask them to slow down and repeat it, especially when they are giving instructions. This is especially true when there’s background noise or when she’s with people she doesn’t know well.
Mindy also has trouble with word retrieval and sometimes with expressing herself clearly. It can be very frustrating when people get impatient, and the pressure makes it even harder. Sometimes she can’t remember what someone has said if she doesn’t write it down. It takes a lot of energy for Mindy to focus and get important things done, and she is generally more capable early in the day. She also has difficulty multitasking, organizing, and prioritizing. To help with this, she uses a week-at-a-glance calendar as a to-do list to stay organized, and she uses a highlighter to emphasize priority items. Her BlackBerry is also a great tool because she can send herself reminders.
Andrea has cut back on certain types of socializing, including parties and get-togethers that begin later in the evening. She could go alone, but she would rather be with Mindy. When they first got together, Andrea noticed that Mindy had trouble focusing on and following conversations at gatherings, and that she would disengage from the conversation. When Mindy is struggling to find a word, Andrea often jumps in and says it for her, and then Mindy can go on with whatever she was saying. Sometimes Andrea repeats any questions to give Mindy more time to phrase a response. This interaction happens very naturally, and most people don’t even notice what is really going on between us.
A United Life
Mindy sometimes tells people about her cognitive issues so that they can hopefully understand when she’s struggling. At times people don’t believe that Mindy has challenges and limitations because she looks fine. Having cognitive issues is tough and, like many people living with symptoms of MS, Mindy grapples with them every single day.
However, Mindy has developed effective ways of functioning and compensating for the challenges, so that much of the time, the challenges are not obvious to most people. When an issue does come up, some people may think they’re being supportive when they say that everyone develops memory problems as we get older. But this is very invalidating because Mindy has had serious cognitive challenges since her 30s that are not due to aging, and she had to leave her career decades before she would have chosen to do so. It is not supportive to tell someone they don’t really have a problem.
We try to help people understand that the best way to show their support is by being patient, accommodating us when we suggest an early dinner, and asking us how we’re doing from time to time. Over time, we each have developed new perspectives on living with Mindy’s cognitive challenges, and we do it the way we face everything else in our lives, united as a supportive couple.
Mindy B. Alpert is an active board member for the National MS Society’s Long Island Chapter, which honored her service in 2007 by endowing the Mindy B. Alpert Scholarship Fund. In 2010, she was elected to the Society’s National Board of Directors, where she chairs the investment committee.
Andrea S. Kantor is a manager in the financial industry providing banking products and services to the nonprofit sector. She is also a certified executive coach who has run her own consulting business.
By Gail Isaacson
I have had multiple sclerosis for 36 years. I was diagnosed in 1976 when I was 26 years old. That means I have officially had MS longer than I have not had MS. Whew.
If you asked me who I was before the world came to an end, I’d probably say active, talented, theatrical — the same words I’d use to describe myself now. You see, the world did not come to an end for me. Even though no one could assure me it wouldn’t.
The title “drama queen” was invented for me. My plan was to spend my life singing and dancing on a stage. I was so stagestruck almost any stage would do. I was working toward this goal when, one summer day in 1976, I had trouble balancing on my toes and I couldn’t make my fingers sign my name. Oh yes, and my head had a spacy feeling, as though air had been pumped into it. Had I morphed into an immense beach ball?
The following day I was back to normal. A few weeks later, I was an airhead again, but now I was a beach ball with a limp. Was I crazy? I consulted a shrink to try to make sense of the melee my life had become. But he thought my symptoms were real and sent me to the man to whom I owe my ability to have lived a relatively normal life with MS — my neurologist, Dr. Neil Allen. After a spinal tap (there were no MRIs back then), Dr. Allen diagnosed me with multiple sclerosis, words that, after 35 years as a professional writer, I still cannot spell. In 1976 there were no MS support groups to welcome me to the club, no injectable wonder drugs, no categories like relapsing-remitting or secondary-progressive.
Dr. Allen treated me with prednisone*. I loved it because it beat back the madman. I hated it because it made my face look like Humpty Dumpty. And make no mistake: I have always been exceedingly vain. I came by this trait honestly from my beautiful mother, who had made it her life’s work to see her only child betrothed to a Jewish doctor or lawyer.
Now that MS was in the first line of my bio, what was my life like? I had bad days, when I resembled an extra from Monty Python’s “Ministry of Silly Walks.” Other days, I was so dizzy I did a sloppy tango with walls and refrigerator doors. But then I had good days, days so good that it seemed like I didn’t have MS at all.
The best advice, and what has kept me going for 36 years, was given to me by Dr. Allen. “Get on with your life. Don’t let MS define who you are. MS is unpredictable and affects everyone differently, so you must learn to know your MS and be your own doctor.” This last statement was incredibly ahead of its time, and remains so today.
I took his advice and carried on. I hung up my tap shoes for good and focused on another talent, writing. I procured a job at an advertising agency and moved downtown so I could walk, or sometimes limp, to work.
From my vantage point of 60 years, my life has not been very different from anyone else’s. I have continually tried to challenge myself, physically as well as mentally. It hasn’t always been easy, but MS has not ruined my life. I inject a disease-modifying drug three times a week, which has taken away many of the surprises. I still experience fatigue and a handful of other manageable demons, but through a strict dietary regime and endeavoring to write and exercise most days, mine is a fine life.
Oh, and did I mention my wonderful husband of 17 years? Heart disease is part of his life, just as MS plays a role in mine. We hold hands on life’s roller coaster, take long walks with our baby, a yellow Labrador Retriever, and hold on to the wonder of it all, trying not to fall down. What more can anyone ask for?
Gail Isaacson can be heard reading her essays on Chicago Public Radio, Iowa Public Radio, and Radio Harbor Country in southwest Michigan. Her essays have been featured in the Chicago Tribune and many literary magazines. Visit her website at www.gailisaacson.com.
* Editor’s Note: prednisone is often used to treat relapses in MS today.