I know the pain, frustration and grief as this illness carves away more and more of what is important to you. First you give up the things you must, then the things you dont want to, and finally the things you cant possibly give up. But you do. And it IS still living. It is NOT just taking up physical space; or at least, it doesnt have to be. You are still a living being with a heart and a spirit. Your worth is not defined by what you do, but by who you are inside.
First you grieve. Then you begin to move on. And then, maybe, you grow in spirit.
Isnt that what Passover is all about, really? Sure, its a time to be with family and to celebrate. But what are you celebrating? You think those ancient Hebrews didnt feel like they had lost everything when they went from being free people to being slaves? And when they thought it couldnt get any worse, their sons were massacred. And the grace they were given, the great gift, was to leave the only home they had ever known and strike out to start from scratch is a strange land. So whats to celebrate? Because they triumphed, thats what. Because they didnt give up. Because life itself is a gift, even when it doesnt go the way you planned.
What will Passover be like for you next year? I dont know. Maybe you will lie there alone in your bed of pain and call G-d a rat fink for giving you this disease, like Job did. Or maybe you will think that this disease is your bitter herbs, and now its up to you to find the honey. Do you believe that the lands the ancient Hebrews traveled to were literally flowing with milk and honey? Or did life simply seem sweet and abundant to them because they discovered the gifts of the spirit?
I dont mean to lecture you. I say this because I have fought, and continue to fight, these same battles within myself. I realize that when I say they just dont get it, thats wrong. Im the one who doesnt get it. Im judging my holiday celebrations from the point of view I had before I was sick; that is, Im judging them from a healthy persons perspective. And that isnt reality, my reality now, as a sick person. Its like saying if I cant have all that I used to have, then what I have now is worthless. And thats like kicking G-ds greatest gift, life, in the teeth and saying its worthless. No! Its up to me to find the meaning which is there. To find the honey.
Im trying to learn to take happiness in my loved ones joys, even when I cant be there in person to celebrate with them. If they cant understand why I have to say I cant do this, maybe I can be happy that they are so healthy they cant imagine what it is like to be ill. I try to see this as an opportunity to find the meaning in holidays when they are stripped of the rituals and accoutrements. I feel as if the way I can really triumph over this illness is if I dont let it destroy my spirit, if I can find ways to enjoy a life stripped bare. What I want is for my spirit to grow and soar, as my physical life becomes more constricted.
Something always strikes me when the news reporters interview survivors of a natural disaster, people whose homes have been blasted to smithereens by a tornado or an earthquake or something. Some people will stand weeping in the rubble of their lives and say Weve lost everything, everything!, while others will say We are so fortunate, we still have our lives. I want to be the one who can stand in the wreckage of my former life and see that Im lucky to have my life. If my life doesnt have the meaning it used to, I want to find new meaning.
My wish for you is that next year you will tell the family that you arent well enough to host the Seder and that someone else will do it and find a way that you can be included without exhausting yourself. I hope that even though they dont get it about this illness, that that will find ways to show they love you even when you cant take the role in the celebration that youd like to. And I hope your spirit soars so high above this lousy disease that maybe even the disease itself becomes a gift. Or better still, that one day there will be a treatment so youre not faced with these choices. Next year in Jerusalem.