A RANDOM LIFE: I have always believed that... - Cure Parkinson's

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A RANDOM LIFE

jupiterjane profile image
14 Replies

I have always believed that life had a purpose. We, as individuals, could learn

and grow through all the life lessons that make up our spiritual realm. With

each person we interact with, in even the smallest, briefest way, they leave

behind with us, a lesson, or an energy that we can then incorporate into our

life. I have lived confidently in the knowledge that I was growing as a

spiritual being every second of every day. My life has not always been good, but

even through the hard, lonely, and desperate times, I was taking in the energy

of others and growing stronger. In the last 5 years everything I have believed

in, lived my life by, and trusted began to fall apart. My life was about to be

altered, changed, destroyed and thrown into the

"just another random life" pile!

I was diagnosed with Parkinson's Disease at the age of 47. It hit me

pretty hard but I knew I could deal with it, accept it and yes even learn

something from it. A month later I was diagnosed with a rare neuromuscular

disease called Cramp Fasciculation Syndrome. Well it sounded like a "crock of

shit" to me! A rare disease, on top of another major life adjusting disease, I

mean, "what the hell is going on"! I lost my job, lost friends, lost money, even

lost a big chunk of my life to the side effect of a drug. I could no longer feel

my own light, my aura, my life line. Oh!, things got better when I met "My

Robert", he has been a bright light in my life, a swirling ball of energy that

warms my soul.

Both my parents died when they were around 60 years old. My

father of heart disease and Mom bone cancer. 2, years ago, the oldest

sibling,first born of seven, died of lung cancer at the age of 60. A year and a half ago

my brother, 4th born, had a life saving heart/kidney transplant. He is 56 and

doing extremely well. A year ago my sister, 3rd born, was found unresponsive on

the bathroom floor. She had suffered 2 severe brain bleeds. She was in a coma, on

a ventilator and basically, "not home" anymore. She was 58.I watched her light become

very dim, and then disappear!

I feel like I am in the movie, "Final Destination" and that my number

may soon be up! I know it sounds crazy but it is just the way I feel. Is it

death that is random, or life? My head is full of self defeating thoughts, and

my light. my soul, feels washed out and watered down!

I'm still looking for the light, the energy, the warmth of my conviction in a learning , growing

experience. It has just become harder to find.

Is my life now, just "A Random Life"?

I'm tired.

I don't want to paint.

I don't want to write.

I don't want to think.

I need a shower.

Jupiterjane

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jupiterjane profile image
jupiterjane
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14 Replies

No life is a random life but I admit I am a little lost at the moment. I do not think that I have self defeating thoughts but my thoughts do wander and I can't find a clear path to follow.

I am still working but for how long?

I am still driving but for how long?

The fight has not gone out of me but I'm fighting shadows and following an unlit path, dangerous stuff.

I do however write and write and write .... It gives me pain, it makes me frustrated but it reaches far into my soul and gives me small victories. I am on my own now but I can conjure up the past the present and the future with my words, sometimes it is private sometimes I shout it to the world. No girl we are not a random life, we just have to shout to be heard.

jupiterjane profile image
jupiterjane in reply toanthonyjohnrobinson

OMG Anthony have you read my blogs? I am constantly shouting! I am just a little miffed today because this morning "My Robert" took me out to by an electric wheelchair, a Hover-round. It has become increasingly harder for me to walk any distance, short or long, with my cane. I have to stop many time and eventually just have to give it up for the day. Robert and I have always enjoyed Flea Markets, and Yard Sales, Church Bazaars and Museums and Art and Craft Shows. I can't go anymore and I, we, both miss it. The wheelchair will certainly help, but the thought of sitting in that chair for any length of time just scare the hell out of me.

This is not what I thought my life would be like, and I feel lost.

Jupiterjane

Joealt profile image
Joealt in reply tojupiterjane

Every day I look out of my front window and see a dozen or so people with canes and wheelchairs and I think to myself "is it the water or what?". OMG there goes one now!!

I can't argue with lost and certainly my hopes and dreams didn't include this scenario. I get myself excited over something then realize it's just not going to happen and certainly not with the girl I moved a thousand miles to be with.

I will continue to shout through my words but I still have time for a peaceful silence.

Take care

Tony

Koko profile image
Koko

Your first paragraph is filled with strength and insight and words form a beautiufl soul and heart. You have what it tkaes to get through all of the dirt that has been thrown your way. You just got off the train that's all. Get back on and ride again.

I love Lennon's words, "LIfe is what happens when we are busy making plans."

If we knew every step of the way of our lives I think it could be boring. Good luck!

jillannf6 profile image
jillannf6

hi jane

i ffeel fo ryou i really do- but i do not hav eany strong faith other than it si the oen and onlh life that we have

and we have ot make the bes tfo it!

i dont always findit at all easy ot do as i s\ay tho

lol Jill

:-)

Court profile image
Court

Hi Jane

As I have said before it is my faith and my grandchildren that keep me going. I just take each day as it comes, both the good and the bad, and try never to think ahead. You are not in a good place at the moment, and we all go there from time to time, but your spirit is so strong and you have so many strengths that I am sure that your you will draw strength, that word again,and hopefully soon be in a better place.

Sue

jobby profile image
jobby

Hi Jane, we are all going through this mental and physical hell. They say its all down to eve eating from the tree of knowledge. Thanks God. be nice to know how we fit in to the big picture !!

Hi Jane! Oh my, how my heart hurts for you! You seem to be such an insightful, giving, and caring person! Don't give that up! I believe that the thought of the wheelchair has brought you(and many other things you see happening) are bringing you down. Can you look at this chair as your freedom? Maybe not yet! It's a very hard thing to give up being able to get around yourself. I believe fear and anxiety have taken away your joy. You said you are a spiritual person! But the light has gone out! The saying goes that if the light has moved (never goes out) then guess who moved? That light says, in a promise, that He will never leave, or forsake us! I pray you feel better soon! It happens to all of us Jane, at different extremes (and this is a big one) and you will get through this, just be easy on yourself, and know you are special! I'm going through a bought with anxiety right now myself and seeing a counselor to try to find ways to overcome it and what is causing it! I will pray for you, Jane, if that's OK?

Blessings to you,

Carol

PatV profile image
PatV

I had trouble accepting that I needed a walker to go anywhere so I was making myself a shut in. Not poor enough for Medicaid, I was going broke hiring people to take me places. And getting depressed staying home. I lost my two brothers to alcoholism, a nephew to suicide , and my son to an accidental drug overdose, my lover and best friend to cancer. I try to remember it's a cost of living so long. I took a walking class and now walk all over, having to ask strangers to help me with the door. I'm a little stronger, but PD is worse and I desperately need a GI specialist who understands PD. I suffer from ab pain that keeps me from going places and worry my kids. "Isn't there something you can do?" If I knew what it was I'd do it!

One day at a time! I'm making this one a good one. It might be my last! :D

Annie81963 profile image
Annie81963

Hi Jane,please try and see the light at the end of the tunnel! I too was diagnosed at 47 years young,and felt the same way you do.I kept asking why me?What did I do to get this disease? I did not do anything,its out of my control.I survived cancer and I will survive PD for as long as I can.I have a wonderful husband who helps me through each day,one day at a time.I take the good with the bad,because without the bad,there would not be any good.I hope you are feeling better today.This is a great site for PD patients,we can help one another,one day at a time!

CJ49 profile image
CJ49

Hello Jane, I've read your poems in the past...so I know you are "intelligent", "spiritual", and yes...even "blessed".

You are not in a "good place" right now. This world, unfortunately, has a lot of "darkness" in it, and I know we are all, at some time or another, "overcome" by it.....When I find myself feeling the way you do....and that "Light" seems to be unattainable......I have to try like h_ll to reach up and "grab" that "Light".....

All these messages to you... from your PD friends on this site are a "Line" .....so "REACH OUT" and "grab it"...We all care about you girl!

I pray that you receive "strength" to grab that light.....because life may not be easy....but it is "worth it!" <3

Joealt profile image
Joealt

Parkinson's sucks!!

jupiterjane profile image
jupiterjane in reply toJoealt

Amen! My Friend, Amen!

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