Should We Take A Moment To Mourn Together?

Mourner. Could be Isis mourning Osiris

Mourner. Could be Isis mourning Osiris (Photo credit: Wikipedia)

Dear Invisible Illness Sufferers:

I’m conflicted. I want to say that we have lost a part of ourselves, a physical and emotional part, do you think it is a good idea to get together in real or computer time to say good-bye to the people we once were? Have we done it ourselves? Or do we just accept and let it go? There is the before Fibromyalgia or Diabetes or CFS, Virus, Autoimmune OR fill in the blank disease________ and after. Think about it, it would be an acknowledgment of our former selves, our loss and our lives now. We mourn people we loved; I am not the same person I was before my father died, I view my life “before he died” and “after.” Maybe we should have a ceremony together for the people we became after our loss, as simple as being silent for a minute at a designated time?

I guess this begs the question: do we ever really accept it 100 percent? We make do, we understand but it’s a way of life that we have lost, forever. I don’t believe that it will ever get better in my lifetime or that there will be a cure. That’s just my opinion. A wonderful approach is given in a book by  Toni Bernhard called “How To Be Sick” which is a Buddhist inspired way of living with your illness. It will teach you things, no other book will teach you.

It has taken me years to truly accept Fibromyalgia, chronic pain and an autoimmune disease called Hashimoto’s Thyroiditis, my activities are now severely limited. Part of my energy used to be used defending myself to people who thought I was out of my mind or a pill popping junkie. Sigh. I can reassure you I am neither of those. Realistically, who would WANT to be like us? Does it sound glamorous to have no energy and to be in pain constantly? It’s not like we take magic pills to make us feel great, there are no pills that take away the pain. In fact, we don’t even remember what pain-free feels like. Of course there’s Fibro Fog but that’s a whole other blog post.

After the imaginary designated time where we mourn our former selves, we give our thanks,  grateful for the life we DO have, for the cyber friends that are in the same situation that UNDERSTAND and for the body that still exists and for the many blessings we hold in our hearts.

Tell me what you think, I’d love to hear from you.

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The Word Love

Now that I am old  and very alone I bought one  place setting of  five different sets of china. I  use them as my everyday dishes because there is nothing to wait for at my age of ninety-three. We never had good china when I was younger and so I bought it for myself. To live another day and wake up in the morning is an occassion. I have no rules now, I  sleep all day if I want to, in my  comfortable old bed that has shaped around my body like clay. I have an old, worn blanket that used to be pink but now it is a little pink and a little gray from age.

I stopped looking at clocks because time does not matter now. If I am hungry, I eat. Sometimes I don’t remember if I ate lunch or breakfast. The phone rings and I try to pick it up but the buttons and numbers confuse me. I don’t always like to answer the phone but I do most times. If I don’t answer  it will ring again and again with loud noises that do not stop.

If it is sunny I will sit on my front porch that is painted white. The porch swing barely moves anymore but I like that. Sometimes I sit outside and watch the people on the street. I drink my apple juice there and when the sun hits the glass I can see rainbows sometimes, I always liked rainbows.

The days don’t feel very long at all now. There are days that melt into each other like chocolate pudding. My daughter always liked chocolate the best as did my late husband but I like vanilla. Vanilla is smooth and light and sweet; my son likes vanilla better too. When I was young I used to call myself “The Vanilla Girl.”

I would not say I am a happy person but I am not sad; I am still.  I am like a painting that hangs on the wall.  Life without my husband is not a life that I can get used to. I speak to him all the time and I answer for him too. Many things I say, I say out loud.  Nobody is here to tell me not to.

Today I got dressed and I wore a blouse the color of a rose; it has a few stains on it but I don’t mind. My knarled, old feet are always barefoot and I remember walking on the beach with my family many years ago and how my toes loved the sand. I wear only clothes that are big on me because I never liked things that were tight. Sometimes I wear a nightgown all day long that my great grand-daughter sent me. It is my favorite thing to wear because it has yellow and blue flowers all over it and because it is from her. Who could have imagined me alive long enough that I would be a great grandmother. It isn’t the same since Grandpa passed on.

Nobody seems to understand. When my children visit  they say I should be “happy” and I  try. They don’t know how it feels when they leave. I love the visits from my family once in awhile but I feel the pain of missing Grandpa worse. There is a sharper pain and it takes a long time for it to go away; it is different from the pains and aches that I have all the time.  I get sad and then later on I feel better because I am alone and I don’t have to smile if I don’t want to.

Later I will watch television from my bed. I never turn the television off. I like to have some noise in the background to keep me company. At first the kids didn’t  want me to live here alone but this is my home and so I will die here too;  surrounded by all my photographs.

I will eat something when I want  like cheese and the inside of the bread that I used to call “cotton” when I was a young girl. I will spread that with butter that is not cold or warm but  comes in a tub; I don’t need to have four sticks of hard butter. I haven’t baked banana bread for many years now.

I am not a mean woman but I am not a kind one either. I am really nothing but I was somebody once. I was a wife to my beloved husband and a mother to our two children; we first had a boy and then we had a girl. Everyone used to say “it was the best of both worlds” and yes, that is really what it was. When I go to sleep I will try to remember a memory but they come and go and then I forget what I was thinking about. That is alright, because that is what happens.

When I wake up in the morning, I will say hello to my dogs and they will kiss my face, and I will drink Ovaltine in a my very favorite mug that has hearts and the word LOVE written on it. I will go on with the day again, and I will sit outside with my dogs and just be.