Reeve Foundation Paralysis Community

 

Dear Trish and bright blue skies and others,

your stories break my heart and open it up.  I have been in your position where I am suffering and those who care about me feel helpless so they say stupid things.  And I felt angry when that happened.  But behind that anger it just reinforced my feeling/fear of being alone in the world never been understood by anyone ever again.  And I know this happens with you when all of these fellow humans tried desperately to change the truth of your life by giving you ideas.

As one who cares about you, the truth of your life causes me pain.  And maybe that's a good thing.  Maybe if a thousand people could feel a tiny little bit of what you go through, it wouldn't change your life, but you wouldn't feel so alone.

And I want for you all of the things you want.  And it's painful to read and listen to because your wants really are simple things that almost all humans take for granted (except maybe the mad, passionate sex).

I want the world to read your posting and with your permission, I'd like to share it with my world.

I wish you continued love and the continued care and companionship you find on these pages.  But most of all, I wish you peace, even if it occurs moments at a time.

Dan

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Dan Gottlieb Ph.D.
www.DrDanGottlieb.com

Dan,

 

You always have my permission to share my thoughts with your world.  I guess that is the whole idea.  I wish I could better articulate this dilemma.  Just so nobody gets the wrong idea, it doesn’t escape me that people suffering with these injuries and diseases aren’t getting what they want either.  I’m sure my husband has a huge list of things he wants and some may be the same as mine.  I guess the difference is that he has no choice in the matter.  He can’t undo what has been done; he didn’t make the choice.  The choice was made for him.  The wellspouse has made the conscious decision to give up their wants for someone else’s needs.  I see that as a difference.

 

On Friday I had to take our boys to the dentist.  So I’m sitting in this pediatric dentist’s office reading a book called 90 Minutes in Heaven.  In walks an elderly lady with her grown disabled daughter.  The mother had to have been in her 70s.  The daughter might have been 40.  The daughter had obvious physical and mental disabilities.  She was blind and was walking behind the mother, holding on to her waist, with her head leaned up against her mother’s back.  The mom signed her in, sat her down, took off her jacket, brushed her hair, and quieted her a couple of times when she started speaking rather loudly.  I couldn’t help but wonder what this mom’s life had been like.  I wondered how many of her wants/desires/dreams were given up long ago.  I wondered if she ever found respite care.  I know she must love her daughter very much, but I just wondered if over the many years she had felt frustrated, tired, and all the things I feel. 

 

He daughter was finally taken back and the mom picked up a magazine.  I really wanted to go over there and sit next to her and talk to her but didn’t.  Just like me, maybe waiting in the dentist’s office with a magazine was her little bit of peace for the day.  It also struck me that had I walked in 15 minutes after I did, I would have thought this lady was the grandmother to some rowdy kid.  Her situation was invisible.  I hope things like this make me more compassionate to others.  It is impossible to just look at someone and read their heart and soul.   

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Trish-

Yes, I do work in the paralysis field but I also have family members affected by it.  One immediate (but not as extensive as yours) and one extended family member.  Both from disease that has ravished their bodies over time --not injury. 

bless you trish your husband is fourtunate to have you i agree nobody seams to understand the effect a sci has on a person or a whole family i have c3 c4 fused with donor bone metel plate and screws the made it possible for me to sort of move ive been this way since 02/08 i have nobody in my family my parents are gone my 3 sisters have their own lives and problems {yes i asked} i have a daughter that lives 2000 miles away is newley married and a mom {a boy} she lives with her mom that has been a x for 9 yrs i had a step family of 5 years my money stoped so did they {go figure} i get rides through the state to dr i get clean every day im greatfull for that im not much of a people person im alive got god and my littlle dog i respect you for what you do for your husband and all others that care for persons like him and i i can hold you touch you love you respect you in my heart through god all i can do is hope this will help relieve just a smigon of your daily stress god blessyou hang in there you are a piller to mankind i will pray for you to have some relief to come your way it may not be alot but every little bitty bit adds up Ronald Grover Riggs 56 years old

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QUADRASPASTIC

Hi Ronald,

 

Thanks for your kind and caring words.  I really appreciate them.  I wish you had more family support but please continue to post here and hopefully you will find support in this community. 

 

I’m not a saint, not an example, really not an anything…I’m just a wife and mom trying to survive a circumstance that I wish I wasn’t in.  Now if I was telling you how fulfilled I was caring for my husband, how grateful I was that God have given me this opportunity, and serving my husband’s needs has brought meaning to my life and I wouldn’t trade it for the world; well then, yes, maybe that is approaching the level of sainthood.  Unfortunately that is not the place where I am and really that is part of the problem. 

 

As a caregiver, I often hold myself to that sainthood standard.  I want to be all things to everyone in the family.  When I can’t achieve that standard, I totally beat myself up about it.  I want to be that saintly caregiver, but I am not.  Yes, I do all the physical things for my husband and kids.  Their physical needs are always met, but many days I am just going through the motions especially with my husband. 

 

I put him to bed nearly every night by myself and many nights I can do the whole routine without saying a word to him.  It’s not that I’m mad at him.  It’s just that this is a task to be completed; another “to do” before I can finish my day.  It’s sort of like cleaning the bathroom.  You do it because it has to be done.  You’re not angry about it, but you just get down to business so you can check it off your list and move on to the next task.   That is a little how it is.  Some days I can be more engaged than others, but there are certainly days I am too burnt out to utter a word.  I’m glad for the engaged days and know that the silent day will pass, and tomorrow I’ll have the chance to do it all over again.  Who knows what kind of day that will be?  I’ve stropped trying to figure it out or mold the day into anything.  It just comes, and I do the best I can. 

 

A few days I go to bed feeling like it was good day, and I made the world a little better.  Many days I go to bed feeling it was just a day, and everyone got what they needed and we all survived.  Some days I go to bed knowing the day just totally sucked, and I contributed to making the day crappy.  100 goods days don’t make up for that one crappy day.  Unfortunately it is that day that lingers in my mind and makes me feel like such an inadequate caregiver, wife, and mom.     

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Trish your welcome im not going to say much today im at the end of my day and my typing finger and arm are wore out thanks again blessyou im new to all this i wont always be able to do this dayley i'll do my best Ronald

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QUADRASPASTIC

I felt so tremendously guilty when I read your post Ronald ... I wish that you had a better situation.  But then I looked at the title of the thread again ... SCI steals and robs from all ... ALL of us, however we are affected.  Take care.

For the past 15 years or so I've been meditating every morning.  Sometimes I close my eyes and start to monitor my breath and my body/mind starts to scream that I don't have time to do nothing I've got to get out of there.  And then a few minutes later it's not screaming but it's coming out with some creative ideas but still not focusing on my breath.  And then I will meditate on love or life or death and everything inside will be open and I'll feel peace.  And then my mind will start raising again and it will feel awful and can't wait till the session ends.  So what's the difference between formal meditation practice in real life?  Just noticing without judgment.
My life is difficult and I am so grateful I have one I can barely speak.  What I wish for Trish and all the other caregivers is that when you rest your head at the end of the day you know that you have helped sustain life.

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Dan Gottlieb Ph.D.
www.DrDanGottlieb.com

Just wanted to let you all know that I’m listening and trying to implement all of your de-stressing suggestions.

 

Here is my story from yesterday.  In typical harried fashion, I am rushing home from work because the nurse is leaving at 4:00 p.m.  However, one of the kids has signed up at school to bring in some sort of food from Nepal that we have to make.  The catch here is that he has just informed me that he has this list of classroom food allergies that has to be accommodated.  One allergy is dairy which is key to our Sel Roti (Rice Bread).  My plan is to stop by the store on my way home and pick up this list of odd ingredients which includes rice flour, non-dairy butter, soy milk, and cardamom (some sort of spice I have never heard of.).  I have exactly 7 minutes to accomplish this task.

 

I park, rush into the store and begin my search of these items.  How long can it take?  3 minutes at the most.  I don’t even bother to follow the proper store flow.  I just cut through an unused check out and speed to the flour section.  I am just about to start my search when BAM the electricity goes out.  Of course there are a few screams and groans but none as loud as the one I hear in my head.  Ah geeze, I’m working on a tight timeline.  I can’t let this stop me.  I’m about to scream “can somebody get me an effen flashlight so I can find my rice flour” but luckily I sensor myself.  I locate my flour in the dark and head directly to the spice area.  On the way I pick up this can or butter flavor Crisco (that’s non-dairy butter…right?).  I can’t see crap in the spice section, so I take out my cell phone and shine a little light on the subject.  I find the mystery spice.  I’m almost home free.  I just have to get the soy milk.  That should be easy.  I grab it and head up to the front of the store.  I’m still on schedule to make my timeline.

 

But wait, hummm…everyone else is blindly making their way up to the front.  The power is still out and there is no way for them to check out anyone.  Gotta love those barcodes and scanning machines that all require electricity.  In fact they are still trying to pry the automatic doors open so people can actually get out.  I’m beginning to feel annoyed and panicked because I’m pretty sure I’m not going to make my schedule now.  I have my 4 little critical items in my cart but no way to get out with them.  I feel an internal meltdown is just around the corner.    

 

But wait, the words of Dr. Dan come to mind… meditate, slow down your breathing, find respite in your mind.  So guess what, I just stand there like everyone else.  I try to relax, chit-chat with the other inconvenienced shoppers and just be…because there is nothing else to be done.  I finally just relax about the whole situation.  I actually waited 30 minutes there, just doing nothing.  Ultimately the power never came back on as it was out in the entire area.  Like most of the other shoppers I ended up quietly leaving my cart full of my precious items there for the store employees to restock.  But I left a little amused, more relaxed, and the house didn’t fall apart because I was late. 

 

I’m getting better…right?   

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

From everything I have read from your posts, I feel that was a big step for you.  I just wanted to say I admire you for taking that step and I am happy for you. 

Dear Trish,

I am so happy that you were able to turn a nightmare into a good time. If you could only observe your mind rather than living inside of it, I think you would be delighted. Most of us who read your posts I am sure find your mind delightful. Passionate, funny, clear and creative. So why couldn't you just do take out at the local Napalese delicatessen?

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Dan Gottlieb Ph.D.
www.DrDanGottlieb.com

Glad to hear it's working and you're working at it.