trying to find people to compare notes of different stages of recovery

[grace]

i am a newbie to trying to learn how to talk to people with incomplete sci, that can relate to all the different things that go along with recovery.  i was paralyzed from the neck down following what was supposed to be a simple surgery on my neck.  my husband and i are alone trying to deal with the day trial and tribulations, with all of our family being 800 miles away.  i just hit the three year mark since the surgery, and have had 4 more since.  i've come leaps and bounds in my recovery.....they had doubts i would ever walk again.  my husband has been a saint through it all, but it is just so hard to explain to him and others how one day i can do something and the next day can hardly get out of bed.  i would so love to find people to talk to.  our house is out built on a little mountain, so we're very isolated.  the few friends we'd made before this have pretty much all turned out to be fair weather friends.  if this isn't the right place for what i need, maybe you can direct me elsewhere.  i'm in the USA so that may matter also, since i see you're in the UK, but our bodies are still designed the same.  thanks, grace

[Gary Anderson]

Grace - welcome!
No matter you are in USA we can still communicate.
I am an incomplete para as a result of a train crash in 1989 when I was paralysed from the waist due to cauda equina syndrome. This is an injury to the nerves as they leave the spine. So my spinal cord is intact but the messages do not get through the nerves to enable me to walk. Being a doctor, I was very lucky to get the right treatment/rehab and as a result I get around on 2 sticks. I am a stubborn old stick and just refuse to use a wheelchair until I absolutely have to. Then, 3 years ago I was involved in an accident with my family and suffered more injuries - this time a traumatic brain injury which left me with other disabling conditions. Worse of which is the effect it has on my emotional side of the brain.

Research this forum and you will see I have a great friend in Jilly who is based in NZ and we still communicate if not each day then as often as we can. She is my rock and can cheer me up anytime I am down. Just thinking about her makes me smile. So you see, distance is no object to friendship. SHe does not judge me just takes me as I am.

So, if anytime you want to talk you can either send me a personal message or an email and I will do my best to respond and try and cheer you up. It is very hard for families to undestand that we cannot be 100% each and every day. Since my accident I have tended towards pessimism instead of optimism but I cannot help that - it is what makes me me.

Like you I have a great family and a small circle of really good friends. If your freinds are fair weather then I say good riddance to them. Just have as good a life as you can with hubby and as my signature says the darkest hour is only 60 minutes long. You can either sink or swim Grace and I tend to dog paddle my way through life.

Look forward to talking with you. Take care.

[LW]

Hello Grace,

You've definitely come to the right place. While not everyody has exactly the same condition on this site we all have one thing in common.

My SCI was caused through a large and aggressive spinal cord tumour which caused me to temporarily lose the use of my legs. My battle has been going on for just over two years and is still continuing. I have now had my tumour excised and have finally regained the use of my legs,  but have been left with severe nerve damage from the neck down. I feel as though I am almost 'separate' from my physical body and this has caused a huge psychological upheaval. So few people understand this and I have felt quite isolated at times; grieving the old me and the life I once had. I've found sites like this a comfort and have also learnt a lot about my condition (the doctors discharged me as soon as I could get up and told me nothing about the prognosis), which is vital to the 'acceptance' process.

I wish you and your husband all the best and hope you wll keep in touch with the board.

Kind regards.

[Millard]

Hello Grace,

I am south east of where you live...in Plains, Georgia. (Home of Jimmy Carter)  I was injured in 1967 as a result of crashing a Fire Bird, leaving me a C5-C6 Tetraplegic.  If I can help you in any way, let me know.  It gets crazy sometimes adjusting to this life.

Good luck.