Hi Mel,

My mother was a world class cynic! She had great difficulty seeing the positive in anything. So being a psychologist since childhood, I was always trying to show her the brighter side of life. One day when I was in my 30s, we were having lunch together and our waitress was one of these constantly happy women. You know, the type that is just joyous about everything – especially service to others. So I said to my mother "mom, did you notice how happy that woman is?" My mother paused for a minute and said: "yeah, what did she know!"
Of course the implication is that if she was smarter, she would know enough to be miserable! (Of course this might give you some insight into why I am a mental health professional in the first place)

Mel, so part of my message is that people are saying "this happened to me and I went through a period of great suffering. If you did not, then either there is something wrong with me or something wrong with you. So there must be something wrong with you."
You see the real reason people make harsh comments is because of what you trigger in them. And please don't think you have any control at all about what you trigger in people.

But to me the most important issue is the one you raised at the end of your letter – that you feel distressed when others make these comments. Of course everyone feels distressed when they are being judged and not understood for who they are, so in that regard you are no different from anyone else.

But there might be additional reasons for your distress. This is going to sound strange, but you sound distressed about the fact that you get distressed. It's as though you think you should behave in a certain way or that you should react in a certain way. And nothing causes more stress than critical self judgment. So I have no idea if that's a pattern for you. But whether it is or not, you will react to your disability the way you react and you will react to harsh judgment with distress. And over time all of those things might change back and forth and back and forth.

Love to hear your thoughts about this

wheeliebird,
Set your mind free from those who just don't get it.  There are thousands of people who live with chronic pain and illness who "look too well" to others to be so sick.  We have to ignore their assement.  When you have an injury or illness you individually learn to adapt to your circumstance so you can live your life the way you want.  With your doctor, your family, your attitude, you decide how you will approach your treatment and your life.  

The people who make fun of you, who talk behind your back, who discount your pain and situation do not know exactly what is wrong or the level of your pain or disability caused by your medical situation.  They are insensitive and have no empathy.  They are rude.  When you hear of their comments you should ask yourself "Does their statement about me have any validity?  Does their assement come from a reliable source or sound information?"  If not, then their opinion is worthless and you need to totally ignore it as garbage.  If it does have some truth to it, then you can consider what that means and decide how you want to change or respond.

Now here's the bigger point.  The people who mock you, who don't get it, who are so crass and ignorant, those people need you.  Yep, they need you to educate them.  If they don't understand what is wrong with you, teach them, so when they need to have disc surgery they don't go to the same surgeon who botched your first surgery.  Teach them about pain management and about the medications that work for you and ones that didn't; about the alternative therapies that you use so you don't have to use drugs for pain.  Tell them about how your positive attitude helps you cope better with pain, and makes your life and your family happier.  AND, even more important, be open for them, because I just bet that one day some of these people will come to you and ask for your help, your understanding and your support when they find themselves in a similar situation.

It's happened to me several times.  I don't have a spinal injury, but I have several chronic medical problems that cause daily pain, seriously limit the things I can do and has altered my life.  Most don't "see" anything wrong with me, only those closest to me "see" or "get it", and there are lots of days they miss understanding how difficult it is for me to function because of pain or the medications I have to take to control pain or manage the conditions.  But over the years friends have called after being diagnoised with the same diseases to say, "I didn't know how much pain you were in; How do you get by?;  I didn't know how tired you were all the time."  Then we talk, I share my vast wealth of coping skills (hey, don't hold back, they need to know how to parallel park on the couch wth the curtains drawn, a laptop, cell phone and the remote for those days with bad flares; what medications work for me and which didn't; the doctors who helped me; support groups and websites that give responsible information; and offer pity party sessions that start with "Tell me how awful your day is so I don't feel so sorry for myself today.") and I make sure they know that they are encouraged and supported.

Pay no attention to the naysayers, they know not of what they speak, Miss Wheeliebird.  Fly, fly free of their murmurings and soar on the winds of truth and enlightenment.
Deborah

Hi Dr Dan

As soon as I read your response, I understood.  The word 'should' stood out to me and I was flooding with many emotions. Fear, hurt, sadness, loss.

I feel its because I am uncertain about the way I 'should' feel, the way I behave has resulted in me not getting the diagnosis I needed, as I  didnt  look like an 'in pain' person does. 

I understand you are very right, this sci is personal to me, instead of searching how I 'should' behave by seeking others acceptence. Who I am, is right for me.  If this brings out rejection from others, then thats ok, I just know if I 'acted' how I 'should' act, they wouldnt like the 'real' me, they would just like  'my mask'. I would feel more lonely in such a crowd than if I was alone.

Thank you, I realise that just because my body has changed and its a new life now, I somewhere along the line, forgot that bringing more parts of my personality along was possible. That I had no right to know how to feel compared to others, as I am new to this. As you kindly shared with us what your mom said, I too felt  'what would I know, I'm not experienced enough as a lady with sci to know what I 'should'  feel'.

Just like you mentioning that people, 'dont want to be wrong, so it must be others', this is like the magic piece of a jigsaw I never got in my whole life. I understand this is exactly the way the doctors possibly  felt when missing my red flag signals too. With you mentioning I am not responsible  for their responses, I do know this, as its not somebody elses 'fault' they have a taste in music I dont like. I guess thats why I'm attracted to certain programmes to watch, to find proof others agree that my taste in music is great, so I dont feel alone. I seek others 'permission' my choices are right.

I guess I just needed to give myself permission and freedom to be, whom  I encourage everyone else to be. An individual person.

Wonderful help :-) Thank you for lending me your time to write and read my reply. I shall enjoy my freedom and shall continue to help others whom ask for my help, to help them help themself. If they dont agree with my way of thinking, that always has been and will always be ok. For the first time, I'm going to apply this to myself, how I feel at one moment may not be right in the future. At that time, I will trust my own feelings.  I've just done that here and it was a lot easier than I feared. 


 

Thanks for your time replying zu zu.

I am one whom believes it does not atter how or what has happened to cause another pain, be it a sore toe after banging it, or cancer. If this is the worst pain someone has felt, then we are of the same level.  I wish quietly to myself that they never have to suffer any more pain levels higher  which would hurt them even more. From your words, I feel you feel very similar feelings too?

Looking at life after reading both of your posts, I feel that I know exactly how not to try to make another feel. There is not much more of a better lesson to learn, than how to treat others like I wish to be treated myself

I shall read your post again in future and be inspired by your forgiving and coping abilities when I feel low.

:-)

 


 

     

I think you've given voice to one of the many problems associated with "being different". We all wonder how do I fit in this new life and this new body?
I remember wondering aloud to my wife: "do quadriplegics take naps? Do they work full-time or part-time? Is it okay to say no to a social engagement just because I am feeling insecure that day or worried about having an accident?"

I knew there were no answers and that they all had to come from me, but I sure would have loved a roadmap!
And then there was the career issues. My psychotherapy practice had changed dramatically-it was much more intimate and intuitive. This scared me because I'd never seen sessions like the ones I was having. Again I asked for a roadmap but never found one.

After spending a long time feeling insecure and second guessing myself, I began to settle in to the truth that this was my path and no one else's. It's sometimes lonely but at this point it is so liberating and I wish it for everyone.

I have said before that when I broke my neck, my soul began to breathe.

Dear Dr Dan

Since reading your second reply, I have made many changes to how I handle this area of my life.

I somehow thought that someone, somewhere must have a road map to follow with sci, although I never thought of it in this way. I now understand exactly how much responsibility it is of mine to take with sci.

When recently said to me 'this is no life for you, wouldnt you like a normal life, 4 walls would drive me mad all day'.

I now reply, within these 4 walls I feel comfortable, safe and warm. The 4 walls I had built around me in my past were uncomfortable, lonely and cold.

Although the environment of my day means being home within walls, I feel my spirit flies freely, visiting the past, present and future with smiles, fondness and excitement to achieve my dreams, remembering them dreams I have lived before.

I read recently we want in life, what we were born to need. Thats why we can never be happy with material wealth. I am happy to say I have these.  Love, care, food, drink, warmth and for me - the best of all - I am mum to my children.  

I like my life, despite living with the sci within my body. Now I give myself full permission too. I still feel lonely, fearful, un-certain, weepy too at times and in my heart know that this is ok too.  

Thanking you kindly :-) 

 

So how do we live without a roadmap? How do we craft a new life?
First, I firmly believe we are born with roadmaps. Not the kind that have specific ideas and directions, but our soul has a calling. And the speed of life, traumas and losses make a great deal of noise in our psyche so that it becomes difficult to hear the quiet voice of our soul. But it's in there.

But in order to get there, we have to stop listening to the noise of our anxiety and expectations, and start listening to the quiet. The only way we can change is to make a heartfelt commitment.

I have a poem in my office called

"Daydreams"

come to the edge he said
no it's too high
come to the edge he said
no we might fall
come to the edge he said
and we came
and he pushed
and we flew

Embracing life as it is, letting go of expectations and our wish to have what we had yesterday, is always a leap of faith