Grief and Loss

This is the hardest thing I have written. It was inspired by the death of a cherished family member, our cat, Tiki. She was like a dog and followed us from room to room, slept under my husband’s chin, and traveled with us in our motor home to the Grand Canyon. She was a very special member of our household, she healed heart wounds, refused to allow arguments to take place, comforted us in sorrow, and always understood what we needed. I know many people think that she was just a cat, but those who have had an extra special relationship with an animal know that they are loved as a family member. The death of Tiki was totally unexpected. We went to bed one Friday night and when I got up Saturday morning, she was lying on the floor near her water, catatonic. We took her to the vet on Monday and learned she had a vertebra that had worked loose and pinched off her spinal cord. She was in pain and her eyes just stared fixated on nothing. Our hearts were broken.

Yesterday, we lost our female Akita. We had a bonded pair of siblings (both spayed and neutered) who had never been separated. Beta had a blood clot in her brain that caused extreme vertigo and an inability to walk. We used a towel to support her so she could use the bathroom. Our vet came out to my van and put her to sleep there, with us holding her. Now her brother is all alone. He is blind and just wanders around trying to find her. He keeps going to the gate waiting for her to return. His grief is every bit as palpable as ours. Both are missed more than I can express

I do not mean to trivialize the death of human loved ones and I am fully aware of the difference, but the grief I feel for our dog and cat is just as deep as the grief I felt for my father, my husband’s father, my mother, my aunt, and three of our best friends in the past 5 years. And we have two other friends undergoing cancer treatment. It is different, but it still leaves an aching empty place inside my heart. I realize that the suffering endured by those who lose a spouse or parent experience a deeper pang of grief, but grief is grief, regardless of the source.

Grief is awful. We all take our own paths and I tend to push mine down and distract myself in order not to feel the pain. Some people can recover in only a few days and some may take a few years. Some, like me, bury it down inside to avoid the pain and then have it turn up later as depression. That is dealing with it without dealing with it. I wish I could cry it out but something always holds me back, even though I know that crying is a very good way to recover. Grieving and crying does not last forever. At some point, the tears will dry up except for special moments, holidays, etc. Odors/aromas can also trigger other bouts of grief. There is an old saying that time heals all wounds but that is only partially true, at least in my experience. Some wounds are so deep that they scab over but under certain circumstances the wound can reopen and grief for that very, very special loved-one can once again overwhelm me. I experience grief as a very profound sadness and I have a difficult time expressing that sadness in tears. The sorrow I feel is always in my mind no matter what I am doing. I admire those who can grieve openly and let it out as much as possible.

One thing that makes grieving easier for me to bury deep inside myself is my sense of spirituality. I do believe our spiritual essence, our soul, if you will, does continue to exist and therefore the loved one is not gone forever. The body is gone, but the spirit lives on within our hearts. Yet, still I experience the sadness, even knowing the loved one lives on inside me. I miss the warmth, the hugs, the comforting words that are shared on a day-to-day basis.

Another type of grieving is anticipatory grief. This is what people feel when their loved one has MSA or other fatal diseases similar to this. The grieving starts while the loved one is still alive and it hurts to watch the beloved slowly die. I believe this situation makes the grieving process much more difficult than in a less protracted illness.

During the month of October, the Shy-Drager online support group suffered through an inordinate number of deaths of loved ones. The grief shared by so many for so many was heart-felt and the love, empathy, and compassion shown by people who have never met each other was truly inspiring. What a wonderful group of people who give their time and energy providing support and comfort for others in need, even as they are also in need. Immediately following the announcement of a death, messages pour in for support to the caregiver and family. This kind of support is, I feel, rare. Most of us have never met and probably never will meet, yet we know each other better than many life-long friends. We pour out our hearts at this site; we ask for help and advice; we ask for information from the caregivers who have been there to assist others long after their loved ones have passed on. In one request for help, a desperate plea, within 10 minutes over 12 individuals responded with their support. I am so glad my neurologist suggested this group as a source of information and support. MSA is a horrible disease, but life can still be lived with modifications given physical limitations. My deep-felt thanks go to each and every member for the comfort they each provide.

Fear

Fear makes up a normal response to every persons life. From the fear of the saber toothed tiger to the fear of the unknown. Fears like fear of cancer, fear of unemployment, fear of poverty and homelessness, fear of heart attacks and strokes, fear of diabetes, fear of war. So many real things to be afraid of.

Because of MSA I have learned that I am no longer afraid of some of these things. People say not to reuse plastic bottles as I could get cancer. So? Many people are afraid of so many things that are no longer of importance to me. No more worry about breast cancer or other cancers, no more worry about cholesterol, no more fear of many unknown diseases. Yes, I am concerned about H1N1 but I take reasonable precautions and use hand antibacterial lotion whenever I go anywhere. I also wash my hands repeatedly. I am not saying I have a death wish just because I am no longer going to worry about so many aspects of everyday life. I just know that, from what more than one doctor has said, it is better to die of anything else than letting this disease run the full course.

I have written a very detailed and specific Advanced Care Directive to avoid unnecessary medical intervention. I wear a DNR bracelet with the name of my primary care and my neurologist on it. However, I have been told by several doctors that they do not follow such guidelines and will do everything in their power to keep me alive. I find this strange as I have always thought the doctors have to follow your own directives.

The most common fear is that of death. As I mentioned in an earlier post, death is a friend to be welcomed when life takes a turn for the worst. I believe we have a soul that lives on and that we will be reunited with our loved ones after death. In discussions with my therapist, I have started to believe that even those people who treated us badly and were abusive, will be healed and whole after death and their true loving spirit will be available to us.

Many famous individuals have made statements about death. I am including a few.
One of the most meaningful to many people who suffer from fatal illnesses is by Gilda Radner written shortly before she died, I wanted a perfect ending. Now I have learned, the hard way, that some poems do not rhyme, and some stories do not have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next. Delicious Ambiguity.
Anais Nin wrote, People living deeply have no fear of death.

Amelia Burr writes similarly, Because I have loved life, I shall have no sorrow to die.

Charlotte Perkins Gilman writes, Death? Why this fuss about death. Use your imagination, try to visualize a world without death! ... Death is the essential condition of life, not an evil.

John Muir, the famous naturalist, wrote, Let children walk with Nature, let them see the beautiful blendings and communions of death and life, their joyous inseparable unity, as taught in woods and meadows, plains and mountains and streams of our blessed star, and they will learn that death is stingless indeed, and as beautiful as life.
And, finally, a quote by a famous Buddhist, Songyal Rinpoche, ...when we finally know we are dying, and all other sentient beings are dying with us, we start to have a burning, almost heartbreaking sense of the fragility and preciousness of each moment and each being, and from this can grow a deep, clear, limitless compassion for all beings.

All of these people, and many thousands of others, have written of a life well lived holds no place for fear of death. Death is a natural occurrence of life. We start dying at the moment of conception.

Think how boring immortality would be. To live forever may be some people?s wish, but I think life holds more excitement, more time for spiritual growth, when we are aware that our span of years in this body is limited. These are a few of the reasons I do not fear death. I fear suffering, but not death. I believe this fear of suffering is common to all people around the globe. So, be not afraid. for fear is the enemy, not death.

Time reconsidered

I have been thinking about what I said yesterday that I would go back 20 years to when my body was healthy and whole. Now, I don?t think so. Back then I did not have the serenity and the wisdom I have now. I had not discovered that peace was a possibility for me. Despite this disease I believe I would choose to be who I am today instead of what I was 20 years ago.

Back in my early forties, everything had to be done right now. It had to be done rapidly at warp speed. I could not slow down and smell the roses (I was one who did not see the roses back then). I had never been diving and had not discovered the oneness with the sea. I had not learned to accept myself for who I was instead of what I was. So, all in all, I will stay in my sixties with my MSA and see what the future holds.

TIME

If I could put time in a bottle. Those words from a famous song are especially haunting for those of us with MSA. For us, time is of critical importance. Not only concerning how much time is left, but also, if we could go back in time before this horrible disease trapped our brains. Could we possibly do something differently so it would not occur?

If I could go back in time, it would be twenty years ago when I was able to walk two large dogs at 4:30 in the morning and still get to work around 6 AM to start my busy day in my library. I could lift heavy boxes of books all day, run to the back of the 20,000 square foot building to grab a book for someone, pick up a stack of books 16? high and carry them in one arm to the front of the building, unload 3 three foot deep carts containing books being delivered to our library from other libraries. I was a true type A individual, only happy when I was going full steam ahead. In between these activities, I completed all my administrative tasks: preparing and keeping track of the budget, writing reports for the Library Board and the City Manager and reading reviews to order new books. The City Manager finally had to tell me I would have to retire and take disability as he was afraid he was going to find me dead on the floor someday and he was afraid for my life. By then, I could not walk more than five feet without gasping for breath, my legs wooden as I tried to hold on for only a little bit more.

Now, I feel lucky if I can walk 30 feet or if I can pick up the cat, or tuck in the sheet on my side of the bed. One book is about all I can hold (unless they are paperbacks), and I use the motorized carts in the grocery (thank God they have them!). I used to breeze through the grocery in a flash, loading the cart and getting in and out with a full cart. I could take the cart out, unload it into my van, and return the cart to the store. Now, I have someone accompany me to load my van and return the scooter. I don?t remember the grocery even having scooters before I lost my ability to really function.

I frequently wonder what is going to fail on me next. I started having difficulty swallowing food last month and I have to take a swallowing test on Tuesday. I dread it. Food gets ?stuck? between my windpipe and my esophagus and I can neither swallow nor breathe until I can force it away from my windpipe with leftover breath in my lungs. Today, I started coughing and choking and gasping for breath while just sitting still. Fortunately, I was with my therapist the first time and he got me some water to soothe my throat. I have had four episodes of that just today.

I started with the night terrors last April and they are truly terrible and terrifying. I start screaming and thrashing and my husband rushes in and holds me and reassures me that it was all a bad dream.

I lost my sense of balance in 2005 when I fell out of chairs, fell while walking, fell while standing, fell while kneeling; you get the picture. I would fall as often as 20 times per day.

None of these things are new to those with MSA. In fact, I am lucky. I can, with the help of medications, walk that 30 feet (sometimes) and, if I am careful, I can swallow (sometimes) without choking. Many of us with MSA cannot do these simple things. Many have feeding tubes in order to absorb nutrition to keep their bodies going. Not to ever be able to savor the taste of food again is a very frightening thought.

People talk about time standing still or time going by so fast. For someone with MSA, unless we are asleep, time creeps by as we wonder if the pain will ease up or what may go wrong with us next. Many times we are left alone with our thoughts and time seems to drag, then a friend comes to visit and time speeds back up. Time has its behavior and we have no control over it. It moves at its own pace, regardless of how we perceive it.

I think of time and of the control it holds over me. And I also think of the control my body has taken away from me. I cannot control time any more than I can control this disease. This disease just is and time just is. And they are what they are. All I can do is observe and try to adjust my focal point away from fear and toward a more positive attitude. I told my therapist I felt like I was on a runaway train that I had no control over and it was heading for a crash. He quietly reassured me it was not going to crash; it was going to gradually slow down until it finally came to a slow stop. Time, for this body, will be over.

I Had a Dream

Last night I had a strange and wondrous dream. I dreamed of my mother, as I had never seen or experienced her. She was in her twenties and radiantly beautiful, with loving and compassionate eyes. I had never looked her in the eyes before, I had never explored her face with my eyes.

What, you may ask, makes this dream strange? Well, my mother had schizophrenia from the time I was an infant. Even my newborn self knew she could not be trusted and I would not nurse (she told me in my thirties) and would struggle to get away from her. I did not learn she had schizophrenia until I was in my forties and I drove over to see her just before she went into colon surgery. The emotional trauma I experienced in my childhood haunted me until I was in my late fifties. I was always afraid of her and never trusted her. When I spent the night in her apartment, I would lie awake, afraid she would stab me in the night.

In 2004, she was Baker Acted again and that was when I sought therapy. Shortly after she was released, she went into the hospital for tests as her hormone level for ovarian cancer was off the charts. She chose to have surgery, hoping it would cure her, despite my advise to not have the surgery. When they opened her open she entirely eaten up by cancer and all they could do was sew her back up.

The doctors did not tell her what they had found. She asked if they had gotten it all and they did not answer. I had driven over to be with her and when she asked me, I could not lie. I told her the truth and she shoved me away. I understood why and did not hold it against her.

I spent the next two days with her, letting her sip water from a straw, feeding her a teaspoon of ice cream, and just Being with her. I think that was when I discovered I loved her for the first time. I tended her for those two days, and when I left on the second day, I knew she would die and, instead of telling her I would see her ?tomorrow? I simply said, ?goodbye, I love you.?

The building she was living in for my dream was a beautiful condo on the beach with crashing waves and an inlet of calm water. The entire wall facing the ocean was windows so she could see it from her living room and bedroom. She had always loved the ocean and every time I would drive over to see her, I would take her to an inlet dividing the island and she would sit and watch the waves and the boats going out to fish or the big ships coming into the harbor. This was where she found her peace and her solace. So, seeing her beautiful face for the first time in the surroundings she found so meaningful to her meant even more to me. I can look back in my mind?s eye and see her beautiful eyes, filled with love, looking back at me. She was whole in my dream, not tortured by her mental illness, and she gave of herself fully to me, as I to her. It was a very wondrous dream. I know she is waiting for me when my time comes; waiting for me in the lustrous white light and her kind eyes.

When the therapist is away?

The last couple of weeks have been very interesting (euphemism) while my therapist was out of the country presenting a program in China. It seems that everything that could go wrong, did.

First, my hair started falling out in clumps as if I had had chemotherapy so I now have several nickel-sized bald places on top of my head. I emailed my therapist a wild note that my hair-dresser had suggested a wig and that ?I do not WANT a wig, I want my HAIR?.

Next came an acceleration of MSA symptoms. My muscle weakness grew worse, balance grew worse, vision problems increased, back pain became radically worse, and hips and knees started hurting more intensely. I started using a wedge pillow to raise my head and instead of snoring loudly all night, I would suddenly and very LOUDLY roar out a snore that freaked out the cat and awakened my husband, and stridor became so loud that I woke myself up.

Then, part of a filling came out and I had to go to the dentist to get it drilled out and refilled. Always my favorite past-time!

To top it all off, I woke up one night to the sound of huck, huck, huck and jumped (well, inched) out of bed to try to catch the cat before she left the hairball on the carpet. Alas, I was too late, and, since I did not have my glasses on and the room was dark, I stepped in it. Huck, huck, huck, YUCK!

I did meet with my psychiatrist each week while my therapist was gone. He is a psychoanalyst, mostly, and provided me with 2 really good sessions. This gave me plenty of fodder for my first visit back with my therapist today.

Despite all of this, I met with the finance committee for the Friends of the Library Group and provided valuable information. I had my Lunch Bunch outing and had a great time. I read several good books and started reading up on the topic of quantum mechanics, fluid dynamics, consciousness and the nature of reality. I met with an old friend I had known as a library customer for many years and discussed the theory of consciousness and quantum theory at Panera Breads. So, I was a busy little beaver while my therapist was away.

Random Thoughts & Stray Quotations

These are some personal musings and quotations/truisms gathered over a decade of reading and thinking, not to mention those items sent to me over the Internet.

Is the glass half full or half empty? I say it depends upon whether you are looking down on the glass or up at it. If you are looking down, it is half empty, if you are looking up from the bottom, it is half full.

The universe is blowing don not get in the way.

Nothing needs to change in your life situation or the world in order for you to have peace of mind.

THE SENILITY PRAYER:
Grant me the senility to forget the people I never liked anyway,
The good fortune to run into the ones I do,
and The eyesight to tell the difference.

Always Remember: You don't stop laughing because you grow old,
You grow old because you stop laughing!!!
When you have come to the edge of all the light you know and are about to step out into the darkness of the unknown, faith is knowing that one of two things will happen: There will be something to stand on, or you will be taught to fly.
Inch by inch, life's a cinch; yard by yard life is hard
I did not have to let the terms of a disease define me. I could redefine the terms. (Michel J. Fox)

Life is uncertain. Eat dessert first. (Ernestine Ulmer)

You never know when a moment and a few sincere words can have an impact on a life. (Zig Ziglar)

Life is all about the moments shared with family and the people you loved that can never be taken away.

A man is but the product of his thoughts. What he thinks, he becomes.
~Mahatma Gandhi

Fear is just a feeling. Fear can never hurt you.

I?ve learned that one of my best traits is that I am resilient. And I have learned that fear is a normal reaction to danger. And I know for certain that panic is the enemy. So I sit where I am and try to keep it together.
(Janet Evanovich)




I had had drilled into me an unflinching attitude toward illness or weakness: Fight it. You can fight it, and you can win. To be weak is to fail; to let down your guard is to surrender; and to give up is to dismiss the power of your own will. (author unknown)

The fundamental flaw in all of this, though, is that it neglects something intrinsic to the complex real world and to complex real human beings. In fact, it is not necessarily true that everything can be conquered with will power. There are forces of nature and circumstance that are beyond our control, let alone our understanding, and to insist on victory in the face of this, to accept nothing less, is just asking for a soul-pummeling. The simple truth is, not every fight can be won. (From The Last Lecture by Pausch)

Computer user error: (from the Internet)

A young lady was having trouble with her computer. So she called the office geek over to her desk. He clicked a couple buttons and solver her problem.

As he was walking away, she asked him, So, what was wrong?

He replied, it was an ID ten T error. A puzzled expression ran over her face. What is that in case I need to fix it again?

He grinned and said, Haven?t you ever heard of an ID ten T error before?

No, she replied. Write it down, he told her, and I think youll figure it out.

She wrote: ID1OT

HEART CENTER MANTRA

I AM THE OPENNESS OF THE HEART...I AM THE FOCUS OF THE MIND...

I AM THE CONNECTION TO THE SOURCE...I AM ONE WITH THE DIVINE...

I AM THE GIVER....AND THE RECEIVER...

I AM ONE WITH ALL THAT IS...AS SO IT IS.