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The Days In Between

This post is by Lena Rivkin, MFA, is an artist and graphologist living in Los Angeles. She has an adult brother named Phillip who has autism. 

I sometimes wonder if my brother and I are single-handedly keeping the printed yearly calendar business alive.  Honestly, I buy 52 calendars every year.  The people at Staples or the 99 Cent store must find me very odd, purchasing 2012 Calendars in October, November and December. The good news is they are much cheaper at that time of year! 

I am lucky enough to have dear friends who send calendars to my brother, because they know how much he loves them. Phillip even carries pocket calendars with him everywhere he goes. Phillip is severely autistic and has OCD. He is also completely nonverbal. Ironically, I will never know how, or even if, Phillip experiences time but I do know what he loves and what he loves to do.

Anyone with an autistic or OCD family member knows how important, almost crucial, rituals are.  Little daily tasks become necessary, if not compulsory. And those of us with autistic or OCD family members know just how painful and disruptive it is for them not to complete their task or job.

Every time I visit Phillip, he immediately looks around for his new calendar.  Once he gets it, he methodically, if not passionately crosses off every day that has already passed. He takes special care to use different colored markers to distinguish each extinguished day from the next.

As a busy person who almost hourly has to remind myself, “Is it Wednesday? Already??” I’m impressed that my brother always knows what day it is. In fact, at New Horizons where he lives in North Hills California, it was his job to cross out every day. He was very serious about his job and never forgot to cross out every day, over and over in ordered layers of color until the day was no longer visible.  Sometimes his verve caused him to tear the calendar page. So be careful what job you give Phillip! You won’t have to pay him, but he will never ever quit. I believe this task inspired his passion for calendars.

Once Phillip is done executing a calendar, they resemble modern art as the many colorful layers of X’s create a pattern of interesting visual rhythms. As an artist, I can’t help but draw a parallel between Phillip’s inadvertent but intentional ‘calendar art’ and the work of the American Abstract Expressionist, Cy Twombly, whose work I have high regard for.  Twombly’s powerful paintings explore the mysterious emotional depths of cryptic words and language. Twombly, a very influential and successful abstractionist had oversized canvases at his disposal and museums all over the world clamoring for his work. On the other hand, Phillip’s ‘canvasses’ are smaller and found in every stationery store, but they are no less meaningful to him, and to me. I am Phillip’s only ‘calendar collector’ and I truly love poring over his expressive and mysterious handiwork.

Interestingly, there is one day that Phillip does not X out. His birthday. September 14. Once Phillip has finished bringing every new calendar to the present day, he finds September, and then the 14th. This three inch square he fills with one word. PHILLIP. He fills that square so completely and colorfully and with such determination that nothing else fits but him.

Most of us have many conflicted feelings around this single day. We are either full of excitement or dread (or both simultaneously) as our birthdays arrive.   For Phillip, I often wonder if he singles out his birthday as another ritual, or if he instinctively feels that this is a special day for him.  

I wish I could read his mind.  Is his birthday linked with his identity? Does his birthday mean that he truly exists, here on earth, with the rest of us? Is he reminding me to never forget to celebrate his birthday? What meaning does his birthday and other holidays hold for him?

I’ve spent a lifetime protecting, worrying about and knowing my brother as best I can.  He is such a gift to me in how he grounds me in the present moment, which is all we ever truly have.  I’ve come to believe that his act of writing his name on September 14th gives him a sense of control and order and consistency he can count on. No matter what each day or month or year brings, he can count on September 14th always being there, as if for him alone.

As the looming holidays breathe on the back of my neck like taxes that need filing or a room that needs clearing out, I fight the pressure of ‘holiday spirit and cheer’ with how my brother treats each day, and ‘his day’ in particular.  Perhaps the lesson is live each day, to the best of your ability, then cross it out completely, because it does not exist anymore and should not be brought into your present and your future. Much easier to say than to do, I know… but especially during the holiday season, it is a life lesson that bears repeating.

I wonder if Phillip has a place in his mind that organizes time around each holiday the way many of us do. I do know he is blissfully unburdened by the pressure to buy gifts or to make the holidays more meaningful than any other day of the year. And frankly, I’m jealous of that! Or are the holidays merely days that need thorough crossing out when they are done?

The holidays and my birthday always seem to launch me on a quest for understanding life and my purpose on this earth. I always endeavor to make gigantic resolutions where I live the rest of my life to the fullest, and refuse to dwell on disappointments, and the past. And yet all these thoughts and goals and determinations do little more than clutter my mind and make me feel less than successful if I do not live up to them. Perhaps I need to cross out the days that are gone and experience each three-inch-box-day as it comes.

As we approach the new year, I always have these questions that are never answered. Perhaps that is the meaning of having a birthday and of celebrating a new year—to simply remain open and strive to learn what we still do not know. 

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.