My husband’s yeshiva is studying “The Rabbi and People with Disabilities” in various different lectures throughout the week. The topic of people with disabilities obviously interests us because I struggle daily with fibromyalgia and all the wonders of living with chronic pain and the ensuing ferocious battle against depression.
To say that I am a different person since fibromyalgia would be an understatement. I don’t think that the healthier me of old would recognize the disabled me of today. My mind and my body have both suffered, grown and changed. It’s hard to explain it to other people. My disability is mostly invisible and so it is very difficult for people to understand the toll it has taken on my life. I think the following poem, written by a mother with a disabled child, really encapsulates how fibromyalgia and depression have changed my life.
WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
I haven’t gotten used to “Holland.” In many ways, I’ve taken inventory and I can see the good things that this change in destinations has brought to my life. There are many beautiful things, deeply touching things, that I would never have experienced had I not become disabled.
And yet, unfortunately, I miss “Italy” deeply. I miss the life I thought I would have had in “Italy,” in a healthier life. I haven’t been able to let go. Instead, I feel like I’m still in shock. Still disbelieving. This can’t be my life. You must have gotten me confused with someone else because this can’t be my life. And I’m not strong enough to be in this much physical pain for the rest of my life. My heart and mind have suffered so much trauma, an entire childhood of abuse, an early adulthood of constant struggle, all in the past twenty seven years. And it feels sometimes like I’m at the edge of a cliff, and either close or beyond my breaking point.
I am in mourning. And as I mourn, I am surrounded by people who talk about “Italy,” who take “Italy” for granted, who can’t imagine what “Holland” is like. As they chatter away about their lives and their plans, I feel like a caged animal trying to reach for something too far from my cafe. I have no plan. Because no one plans for “Holland. ” “Holland” just happens. And so I cry about “Italy,” for the life that should have been and for all the unearthed, long buried pain and the new pain that “Holland” has been etched into my soul.