I am very small. I am snuggled in the large Victorian bed of my grandparents, who we call Mama and Papa. It feels safe and warm lying between them.
Papa is recounting one of my most favorite stories. It is a real tear-jerker called “Papa’s Letter,” or maybe it is the scary one about “The Deep, Deep Cave.” Today, in my grown-up mind, I can still see that cave; I can imagine it nearly as black and real and terrifying today as it was back then.
When I can no longer entice Papa to tell more stories, it is time for my grandmother to rise and dress, which entails Papa getting out of our warm bed and beginning the process of helping her into her corset. I watch with interest.
Then a year has passed and Papa is no longer well enough to take me out into the garden to show me how his pumpkins are growing. Fortunately, even though he is now completely blind, he is still well enough to sit me on his lap and tickle me until I can hardly catch my breath.
Despite my young age, I am beginning to read for myself. There is a beautiful picture on the wall of the room Papa now spends his days in. It is of a fair-skinned figure I have learned to recognize as Christ. He is standing at a doorway, and the words around Him read: “I shall pass this way but once; any good that I can do or any kindness I can show to any human being; let me do it now. Let me not defer nor neglect it, for I shall not pass this way again.”
I haven’t realized that Papa is dying—that he will never pass this way again—but even though I am still too young for school, I can read those words and they touch my heart, settling right there next to my enduring memories of those days.
They begin to merge with other words like those of my mother: “Never put off to tomorrow what you can do today” and “If a thing’s worth doing, it’s worth doing well.” These two imperatives work together in my mind with the early words to ‘neither defer nor neglect any good thing”. They set in place a drive to achieve that at first I easily manage to ignore where it applies to school work or anything that clashes with “Going to the movies’ and ‘Hanging out with my friends”.
However, in my twenties I meet Suzi and my values undergo a much-needed paradigm shift. She is the first Baha’i I have ever met. She balances my driven inner messages with her Irish advice of ‘Near enough’s good enough’ and in the process, shares the beautiful Baha’i teachings with me.
Greedily I absorb her information and my life consequently changes forever. In a matter of three days I am transformed from a dreary material being to an illumined spiritual one. Suddenly the list of things I see as worth doing expands from “Being a feminist” to an all-encompassing “Being an Active Baha’i”.
I am finding my true self, which is turning out to be a much nicer person than I had imagined. I revel in the opportunity to extend my life from familiar fields like the advancement of women, peace issues and education, into more profound areas that I now recognize as playing a role in the unification of the planet.
Then I begin to develop an illness which, after years of growing concern, is diagnosed as Multiple Sclerosis. I am trying to work as a sole-charge teacher in a Baha’i-inspired school, but now have double-vision and can’t see to read, nor do I have the coordination to write. Suddenly I am becoming so ill that I can’t move about the classroom without holding on to desks. I develop ongoing severe nausea and my weight drops dramatically. Soon even breathing becomes difficult. All I can do is lie in bed and try to endure the pain that tortures me day after day until I long for death.
One of the benefits of these long days is that, thanks to the prayers of many concerned family and friends, and in the treasured moments when pain and nausea lift, I have increasing time to read the Baha’i writings, to pray and meditate with greater devotion than ever. As the process of recovery gains impetus, I surprise myself by being able to write and publish my first book, Baha’i Families. After several years that follow, a new exacerbation gives me the opportunity to write another book. It draws upon my experience with overcoming hardship and is called Change Your Life, One Thought at a Time.
My MS story began over 30 years ago. Recently, when both my neurologist and cardiologist independently gave me pamphlets about ‘End of Life Preparation’ without the other one knowing, I thought I should probably take their advice fairly seriously.
I’ve been all set for the ‘End’ part for quite a while now. My family too. In fact, it’s almost reached the point where my physical continuance is a bit of a let-down, for me at any rate. I’ve prepared Last Words letters to my children several times now. The first were appropriate when they were children and teens, but totally inadequate once they’ve grown to be parents and had children of their own. I haven’t written letters to my two grandchildren yet, because when you’re living on limited energy you have to draw the line somewhere. Still I find there is always something I want to finish, some words I need to write, some ideas I need to express.
In the meantime, we’ve bought the plot, chosen the coffin, and updated the funeral program several times, because births and marriages mean we keep having new family members to accommodate. Now, I imagine those who are still on the program are totally over the whole thing and fully expect me to live forever.
I sure hope not. There is only so much pain, disability and fatigue a person can live with—but the small book of The Hidden Words in the Baha’i writings carries this wonderful assurance:
O Son of the Supreme! I have made death a messenger of joy to thee. Wherefore dost thou grieve? I made the light to shed on thee its splendor. Why dost thou veil thyself therefrom? – Baha’u’llah, The Hidden Words, p. 11.
Through it all, I’ve learned this: when you live with your imminent demise, all your priorities change. The things I may have formerly valued are pointless. I would gladly exchange the materialistic values of good looks or wealth or fame for the hope of turning up at the symbolic Holy Gates with a more loving nature, for a more forgiving and long-suffering character. After all, what profit will any of those material things offer me then? Ultimately we must all, whether high or low, whether willingly or with despair, face the same value shift:
What armour hath not been pierced by the arrow of destruction, and what regal brow not divested by the hand of Fate? What fortress hath withstood the approach of the Messenger of Death? What throne hath not been shattered to pieces, what palace not reduced to rubble? – Baha’u’llah, The Summons of the Lord of Hosts, p. 134.
But I gladly face all this with the assurance that:
To hold that the spirit is annihilated upon the death of the body is to imagine that a bird imprisoned in a cage would perish if the cage were to be broken, though the bird has nothing to fear from the breaking of the cage. This body is even as the cage and the spirit is like the bird: We observe that this bird, unencumbered by its cage, soars freely in the world of sleep. Therefore, should the cage be broken, the bird would not only continue to exist but its senses would be heightened, its perception would be expanded, and its joy would grow more intense. In reality, it would be leaving a place of torment for a delightsome paradise; for there is no greater paradise for the grateful birds than to be freed from their cage. – Abdu’l-Baha, Some Answered Questions, newly revised edition, p. 262.
Knowledge of this has left me with a paradox: for the sake of my family I want to live as long as possible. However, I have such a strong attraction to the world of the spirit, a world I have joyfully anticipated for so long, with the complete assurance that:
Every day of my life I am so grateful for my long experience with MS. It has inspired—well, insisted, really—that I strive to develop greater degrees of conviction, courage, perseverance and many more spiritual qualities than I can name.
Nonetheless, for millions the cure for MS cannot come soon enough!