The Story of Wheels
Wheels is the nickname of my 25 year old cousin, aptly so because he is in a wheelchair. He suffers from a condition known as Charcot-Marie-Tooth Disease or CMT, named after the three doctors who discovered it in 1886. It is a hereditary disease in which the nerves do not function normally meaning that there is little or no stimulation to the muscles. Cases differ from individual to individual, with some having few limitations and others much more serious ones. Wheels' brother leads a perfectly normal life with only a slight hunch in his shoulder whereas Wheels is wheelchair bound and is unable to do simple things like straighten his fingers or tie his shoelaces. It is not a fatal disease and it does not affect the brain. Unfortunately at present there is no cure, however with the use of braces and physical therapy sufferers can prolong the deterioration of their condition and increase their mobility.
The treatment of disabled people infuriates me intensely. I have been trying for a while now to convince Wheels to come to Australia. There is hardly any support for disabled people in South Africa and I have recently found out that the information he has received from his doctors there is very antiquated, which is only going to see him get worse. (I am no Doctor and do not profess to be one, however with the new research findings from the CMT organization in America it has been shown that the advice which he is being given is now obsolete.)
Finally I have made headway as to why he has put off coming over here - the reason? The fact that he will be a burden! The fact that people have so many problems in their lives that they do not need the added pressure of having a disabled person live with them!
When I spoke to some close people about bringing him over here I was stunned by the negativity in everyones responses. "You realise how this will impact YOUR life?" or 'You know this means he will become your responsibility for the rest of your life?" and "Just let him come over on holiday, don`t get his hopes up about staying, he won`t get accepted into the country." and my personal favourite, "You don`t owe him anything you know!"
My response? What if I were disabled? What if I bore a disabled child? And what about HIS life? Does he not have the right to lead as normal a life as possible even if you have to put yourself out a little in order for him to do so? I know what it is like to be ostracized by family. I know what it feels like to be rejected and belittled because I was not what they had in mind, I did not fit the mould. I also know that I have the ability to pick myself up and remove myself from that situation because I can look after myself and be independent. I can only imagine what it must be like to be dependent on others. And I will NEVER know how anyone can turn their back on someone in that situation.
So now that i have finally managed to convince Wheels that he can only add flavour to my life and that I really need him here to help me with my MAJOR DILEMMA that I discussed a few posts ago, we can start to build a bridge to move forward from this and begin to get rid of all those negative thoughts that haunt him everyday, put there by narrow-minded people. Although I will not be taking the offer up that came my way, the two of us will be embarking on something which will eventually lead to the same outcome - except it will be ours from the start.
It is going to be a hard slog, I have to look after the both of us (which will be interesting as I have trouble looking after myself
) and find a way for him to be able to stay here. I will not even get on my soap box about Immigration Laws right now and the problems there, that is for an entirely different SERIES of posts. So there is a lot of work to do, a lot of research beginning and a lot of brain storming on how we will manage through it all - but we have made quite a lot of headway already with some pretty good ideas up our sleeves that now require some hard work, lots of prayers and perhaps some minor miracles to make it all happen.
So thanks to everyone for their supportive responses to my MAJOR DILEMMA post. It helped a lot with the making of this decision and gave me the boost that I needed. There are some who very kindly offered help - thank you and I shall be picking your brains as the journey continues.
I just wanted to leave you with the following story.... and perhaps a small request. When you see someone who does not 'fit the mould' just give them a break. You do not realise what goes on in their lives and they do not need the added pressure of having to feel even more helpless than they already do. Just because someone is disabled does not mean they are stupid and most certainly does not mean that they do not deserve a 'fair go' at enjoying their life.
A few days before a soldier was due to arrive home from his tour to Vietnam he phoned home and spoke of his best friend who had lost both legs during battle. This man had saved his life and he was forever grateful, now he wanted to bring his friend home and look after him as he had nowhere else to go. "No son," was his parents reply. "Think of the life you have to live, think of the burden he will be to you." The young soldier never returned home for that night he took his own life. When his parents went to identify his body they found their son lying on the table. Both of his legs were gone.
The treatment of disabled people infuriates me intensely. I have been trying for a while now to convince Wheels to come to Australia. There is hardly any support for disabled people in South Africa and I have recently found out that the information he has received from his doctors there is very antiquated, which is only going to see him get worse. (I am no Doctor and do not profess to be one, however with the new research findings from the CMT organization in America it has been shown that the advice which he is being given is now obsolete.)
Finally I have made headway as to why he has put off coming over here - the reason? The fact that he will be a burden! The fact that people have so many problems in their lives that they do not need the added pressure of having a disabled person live with them!
When I spoke to some close people about bringing him over here I was stunned by the negativity in everyones responses. "You realise how this will impact YOUR life?" or 'You know this means he will become your responsibility for the rest of your life?" and "Just let him come over on holiday, don`t get his hopes up about staying, he won`t get accepted into the country." and my personal favourite, "You don`t owe him anything you know!"
My response? What if I were disabled? What if I bore a disabled child? And what about HIS life? Does he not have the right to lead as normal a life as possible even if you have to put yourself out a little in order for him to do so? I know what it is like to be ostracized by family. I know what it feels like to be rejected and belittled because I was not what they had in mind, I did not fit the mould. I also know that I have the ability to pick myself up and remove myself from that situation because I can look after myself and be independent. I can only imagine what it must be like to be dependent on others. And I will NEVER know how anyone can turn their back on someone in that situation.
So now that i have finally managed to convince Wheels that he can only add flavour to my life and that I really need him here to help me with my MAJOR DILEMMA that I discussed a few posts ago, we can start to build a bridge to move forward from this and begin to get rid of all those negative thoughts that haunt him everyday, put there by narrow-minded people. Although I will not be taking the offer up that came my way, the two of us will be embarking on something which will eventually lead to the same outcome - except it will be ours from the start.
It is going to be a hard slog, I have to look after the both of us (which will be interesting as I have trouble looking after myself
) and find a way for him to be able to stay here. I will not even get on my soap box about Immigration Laws right now and the problems there, that is for an entirely different SERIES of posts. So there is a lot of work to do, a lot of research beginning and a lot of brain storming on how we will manage through it all - but we have made quite a lot of headway already with some pretty good ideas up our sleeves that now require some hard work, lots of prayers and perhaps some minor miracles to make it all happen. So thanks to everyone for their supportive responses to my MAJOR DILEMMA post. It helped a lot with the making of this decision and gave me the boost that I needed. There are some who very kindly offered help - thank you and I shall be picking your brains as the journey continues.
I just wanted to leave you with the following story.... and perhaps a small request. When you see someone who does not 'fit the mould' just give them a break. You do not realise what goes on in their lives and they do not need the added pressure of having to feel even more helpless than they already do. Just because someone is disabled does not mean they are stupid and most certainly does not mean that they do not deserve a 'fair go' at enjoying their life.
A few days before a soldier was due to arrive home from his tour to Vietnam he phoned home and spoke of his best friend who had lost both legs during battle. This man had saved his life and he was forever grateful, now he wanted to bring his friend home and look after him as he had nowhere else to go. "No son," was his parents reply. "Think of the life you have to live, think of the burden he will be to you." The young soldier never returned home for that night he took his own life. When his parents went to identify his body they found their son lying on the table. Both of his legs were gone.
Kalikapsychosis
Magnificent story. Youve written raw but so well and expressed things I try to voice everyday.
I cant wait to hear more, and the continuation of the story!
I understand the burdens of a disabled person as well as I understand what it is to feel like one. I got into a fierce debate once because I said I would abort a disabled baby. Only because, in MY philosphy, I can give that kid another go with a BETTER body, and I dont want them to have to deal with the struggles it would cause for THEM.
She ended in damning me and saying terrible things about me, and asking what I would do if my child were disabled and nothing COULD be done?
She never found out - Shakir, Teshans first foal has been brain damaged from birth. He was trapped in the birth canal for too long. I would never sell him, or let anyone else even look after him, as even though he manages a full life he has certain considerations that need to be monitored. With careful and attentive raising I have allowed him the fullest life he could have - most people never notice anything different about him.
I so
applaudSTANDING OVATION what you are doing. I think you guys are going to have a great time looking after each other and its going to be great for both of you.*HUGS*
Mum's Word
Fantastic story and good on you. With all three of my pregnancies when it came to test for Down's Syndrome I didn't do it because even if the test was positive, I would not have aborted.
A burden on your life? You are bound to learn things about yourself that you otherwise would never have learnt. How is that a bad thing? How is challenging yourself, short changing yourself?
Bugger the nay-sayers Ash.
Love & stuff
Mrs M
Photography Tips
MS Paint Art
These things are never easy, you make your point so well.
And those very very beautiful eyes.
katyzzz
From The Home Front
Enviro Warrior
Dream Herald
Esoteric Bookshop
You know that this one is VERY close to home for me, with my eldest in and out of her chair, yet all I can think about is you bringing Wheels down on Saturday mornings to wheelchair dancing, just so you can watch his life go from downcast, to absolutely skyrocketing fireworks of enthusiasm - even public performances if he chooses (so helpful in breaking down the stigma still rampant in society) ... and we're not even talking about the support you'll get out of it!
I applaud your decision and can't wait till the next play marathon! *chuckle*
To the guts here : We have no contact anymore with my husbands family, becuase she is disabled. They cannot accept the loss in prestigue in their Gold Coast (mansion) lifestyles... having a disabled kid sitting around just seemed to 'Litter the Lobby.'
There is sooo much water under the bridge, but at one stage - in their pathetic denial - they were even trying to convince us that there was no disability, we were causing it all and making it up! Not easy going with the doctors telling us she'd never walk, either...
The only family left now, is my dying father and stepmother... the rest are all DEAD (in all ways, already)... you'll find spiritual family, instead to replace every single one of them ...
Power to you girlfriend, we look forward to meeting him.
Lilla ...
PS Mrs M is spot on, you'll learn things you never knew, you never knew...
Rugby World Cup 2007
**********
Imagine if Mrs Hawking decided not to go to full term...
Yes Stephen Hawking has not always been wheelchair bound but he was born with the 'disease' that has rendered him physically handicapped.
Unless of course he's in space!
Earlier this year he went on a zero gravity flight to prepare for Virgin Galactic's(?) 2009 space flight.
Mentally?...sharp...genius... brilliantly witty...
Unfortunately Ash...I too applaud your choice.
I say unfortunately because this should not be something out of the norm. Something that needs to be applauded. This is the world we live in though and idealists are forced to be realists.
This may sound naive but I am not naive and neither are you. Yes it is going to be a hard slog...so what?
I would like to believe that when faced with choices, I would make the humane choice. Whatver that is... is what feels right to and for me, at that time.
A part of me believes Life is what matters.
A part of me believes it's the living of Life that matters more.
...all of me believes it's the individual's choice to mak the choice.
I do feel a bit naive in regards to the general thought consensus. Both what you and Lilla have said shocks me. People really think like this?
God help us. Truly.
Ash...you have the spirit of humanity within you. What more could anyone ask of themselves?
much warmth
Dusk
ps. your banner...those eyes...who?
Australian Traveller
Flashes of memories
You are right - I did write raw. This has been a very raw few days for me and anger has bubbled out like it hasn`t done for a while. I already have so much else going on without having to deal with people`s negativity and insensitive remarks in such an instance as this.
I have thought alot about what would happen if I were to find out my unborn child would be disabled. I have very strong views on abortion in that I don`t agree with it. Full stop. I have my reasons with this one and cannot be swayed but they are my own and I respect your beliefs toward the subject too.
Part of my reason is I believe that every person has a reason for being here and that we all come in different packages with different reasons for our existence.
CMT is a sly bugger because it can come on at any stage of life. These boys were only about 5 when their symptoms were picked up and they went through absolute hell with bloody doctors who were using them as guinea pigs.
That is excellent that you have taken such good care of Shakir. So many would have chosen to get rid of such a 'problem' animal. Sadly there are people out there who do the same to their own children too. It is a very bad omen in some cultures for a disabled child to be in the family.
I hope everything is working out a little better for you at work.
Hugs
Ash
Movies and Life
I also read your post last night and have been thinking of you a lot through the day. I honestly can't believe how people could say such things. Burden? How can anyone describe another human like that? I despair when I hear of things like that. But I know it happens and the thing to hang onto is that not everyone thinks or acts like that.
Lilla, I was really sad to hear what you said, that is an awful way to treat someone.
This may be blunt but some people just do not think....4 months after my sister died, I was crying (in my own place) and my husband was talking to his brother on the phone. His brother was amazed that I was still upset and said ‘how long does it last for?’ I.e., the grief....well, I have news for him, 4 months does not do it!!! What a naive nit-wit.
Do what you feel you want to do, Ash, he is your family and you love him. I could feel that through your words. I hope you have some support too and look after yourslef.
Thinking of you, Ash,
Trace xxxx
PS I’m sorry I couldn’t say more but I was finding it hard to express what I was feeling...
Australian Traveller
Flashes of memories
I feel the same way. So many things can happen in life that can render one unable to look after themselves - there is no picking and choosing and there is no ways you feel it a burden to help someone... at any time or any place.
I think because my independence is so valuable to me it makes me feel even more strongly about this because I can only imagine what it would be like to have that taken away.
I am already learning things about myself just from having conversations with Wheels about living with him - you are so right there. He has taught me a lot over time - how important it is not to take things for granted. I look forward to everything else that he will teach me too. He is a very intelligent young man and his heart is a heart of gold. I get excited every time I think of him being here - I just wish it was sooner rather than later now!
Thanks for your support Mrs M, it means a lot!
Hugs
Ash
Australian Traveller
Flashes of memories
Much appreciated. I do have God on my side... one must have spiritual strength to get through life I feel.
I am trialling photography of body parts.... post to follow on my other blog at some stage! I just LOVE this photo!
Hugs
Ash
Movies and Life
Australian Traveller
Flashes of memories
I thought you would have something to say here ~chuckle~ your daughter is certainly a trooper and has such a great sense of humour. She must be a Scorpio
I love it! LOVE IT! I get so excited for him. This is so what he needs and I just know that he will enjoy every moment of it. We went dancing one night when I was in South Africa many years ago... I`m not much of a dancer with my two left feet... and you should have seen the look on his face. I got him up there on the dancefloor in the middle of the club and we had a great time! Neither of us gave a damn. This one girl even grabbed his hands and started dancing with him too! You could tell for that tiny moment he felt like he was 'normal' .
It really brings a lump to my throat how people treat others - especially children. I won`t get into my tale of rejection but I know what you mean about these stupid people who think you will spoil their little picture of their perfect family. I am truly sorry that your daughter had to endure that - it is a blessing that she has her family around her... where would she be without you.... it just doesn`t bear thinking does it? I can`t believe they tried to convince you that your daughter had no disability.... DOH ~slaps forehead~
I sometimes wonder about Doctors. In fact I often wonder about Doctors... which is whY I steer clear of them myself. How happy am I to hear that none of you listened to them! The more that I am learning about his condition the more that I am seeing how bad his current situation is for him. Since his mom passed away I think everything has just gone down hill for him.
Now I just have to get around these bloody immigration laws! I am having trouble with my own at the moment - you know how much that is exciting me - so I`m donning the boxing gloves for the fight it`s going to take to get his done. YIKES!
I`m so looking forward to this, I get really excited about it because there is so much to look forward to - I just don`t get how everyone else cannot tap into this positive energy! I look forward to introducing him!
Thank you for sharing your story - it gives me an extra boost which I can pass on... it is really needed!
Hugs
Ash
Australian Traveller
Flashes of memories
Movies and Life
Australian Traveller
Flashes of memories
Stephen Hawking is indeed someone whom my cousin can look up to as a role model.... thanks I never thought of him and shall pass on his name as reference for my cousin to read up on... what you are on the outside does not define who you are on the inside - it`s all just packaging and I really wish people would start to look past that.
Earlier this year he went on a zero gravity flight to prepare for Virgin Galactic's(?) 2009 space flight.
That`s just amazing! Good on him!
I like that you have said UNFORTUNATLEY I should be applauded - I am not doing anything that any other person should be doing. I think the applause should go to Wheels for being brave enough to finally start thinking about himself and what he wants - that`s a huge part of what has made me so happy. He can only enrich my life and I am privileged that he wants to be a part of that I really am.
Ah I just love people Dusk, I really do love people. I love to listen to their stories and watch them come alive. I love to see people being themselves and achieving their goals. For me that is what makes life worth living.
There is so much ugliness in this world, so many people jealous of everyone else, greedy and salivating like wolves to tear each apart that when I see someone like Wheels who struggles just to have some normality my heart breaks. It is not necessary - we`re all in this together or so the song says. We all need to chip in and lend a hand you know? It is why i have such little faith in the human race and tend to stick to a few people who really do care.
Thanks for your comment.
Hugs
Ash
PS. The photo is of my wee Godson. He has the most incredible eyes doesn`t he? I am experimenting with photographing body parts atm.... um.... like limbs and facial expressions! I just LOVE this photo.
incredibly touching story of bravery and dedication...
I'm sure you and your brother will do wonderfully together...
Yes, it'll be a long hard road, but think of the rewards you two will have!
Excellent heartfelt post! I iwish you all the best...
Take care,
Nick
Australian Traveller
Flashes of memories
I had typed out this comment to you and was half way through and we had a power cut! Argh!!!!
So I begin again
I am sorry that you have such an insenstitive brother-in-law. My grandmother passed away 10 years ago and it still hurts as badly now as it did then. I imagine you would feel the same about your sister.
Like I said to Dusk I love people... family or not family. My cousin has a great deal to offer the world and as Mrs M and Lilla have said can teach me so much. He had me in hysterics last night talking about how scared he is of flying here. I know that doesn`t sound funny but the way he put it was hilarious
I just got news from the Australian embassy in South Africa who say they cannot help us. ARGH! And so the battle begins.
Oh by the way I just rememebered - do you recall me saying we had to sing the national anthem in the pOst Office? He was having us ON!!!! hahahaha! I wanted to punch him I was really stressing about that one.
Thanks for your comment Tracy. Much appreciated.
Hugs
Ash
Australian Traveller
Flashes of memories
My cousin is a strong man he will do well. I really lookf orward to having him as part of my life.
Thanks for your support.
Hugs
Ash
Movies and Life
Hi Ash
Aaah, those immigration forms and processes are so frustrating aren’t they?!
That’s so funny that it was a joke about you having to sing in the post office...I really fell for that one and even told friends!!! Your cousin does have a good sense of humour
Thanks for what you said about my brother-in-law, I love him, he’s a great guy but he can definitely be insensitive at times. I can’t fathom how he could ask such a ridiculous question but I just had to shrug it off..there’s no way I could explain it...
Good luck with it all, Ash. Feel free to vent here about the immigration frustrations whenever you need to..
Hugs to you too xxxx
Australian Traveller
Flashes of memories
Oh tell me about it! I laughed when he told me because I have also told a few people - see how rumours get started hey!?!?!?! I am racking my brains at the moment on how to get him back for this one!
You can`t explain grief to anyone unfortunately it`s just one of those things that you can only imagine.... and you never fully understand until it happens to you.
It has now taken us 8 years to get to our Citizenship status from the time of applying... for them to not load the right forms on their website. Amazing! There`s a book in that alone I tell ya!
Hugs
Ash
Killer Beats
Ramble On
Hipnotherapy
This post cuts right through me. My nephew is Austistic. Once my sister and nephew were flying to Florida forvacation. Jonathan became upse and began perseverating behaviors of groaning and shaking his hands. One of the passengers said to my sister "you know that children should be seen and not heard. maybe you ought to teach him some manners." My sister says, if you keep on complaining, I am going to sit him next to you!
Mis
Movies and Life
TRacy
Kalikapsychosis
Even though I am pro choice I totally respect your views. I just know how hard growing up was for me - I couldnt put my child through it, or worse, if I felt it could be avoided.
But I use Shakir as an example, because more than 90% of horse people I know would have got rid of him or knackered him, just because he's 'not quite right' and needs that extra attention. Im lucky that he knows to eat and drink on his own, he just gets confused and agressive very easily, like his brain crashes. All things need to be introduced very slowly and with reassurance. I know a horse is not a child to the majority of people, but most of my animals have something 'not quite right', thats why theyre here! Its a sticky issue when disabilities become apparent later in life, and I just cant imagine how most people manage to hold it against them then.....Thats just not fair. Well, no, not even 'not fair' cuts it there. Lillas story is awfully sad - how do families just decide not to love someone for something they cant change? It blows my mind.
Love Speaks
Food Slate
My sister and I nursed our mum from (an almost) invalid state after a major brain operation -- during that time it was very apparent who the friends (and relatives!) were...and who were just there for the good times. So many left us during that time...ashamed 'cos she was not the same vibrant woman she was and slightly disfigured 'cos of a facial paralysis. It hurt (then) and being just young teens then didn't quite understand why they were being so hurtful/unhelpful -- we know/understand it now as mere ignorance...or perhaps arrogance...
Go with what you think is right, Ash -- I really doubt anyone has the *right* to say otherwise...
p/s...sorry I haven't been around much -- just catching-up now...
Lilla -- I felt really sad when I read your story, but am happy that you and your husband (and your great girls!) have remained strong.
xox...
Australian Traveller
Flashes of memories
HAHAHAHAHAHA! Good on your sister! I love it. Should have told her, 'Don`t you know we live in the 2000's not the dark ages you old hag????"
Some people are so insensitive aren`t they? My word!
Thanks for your story!
Hugs
Ash
Australian Traveller
Flashes of memories
Australian Traveller
Flashes of memories
Yeah unfortunatley you never know what will get dished out to you. I have acustomer up here who has a son who had a heart attack... at 15 years old! He went into a coma and they were getting ready to pull the life support off but he kept on choking and fighting.
Now, even though he is in a wheelchair and can hardly talk they have taken him home and readjusted their lives. No longer do they have this active, surfer boy teenager - but they have this young man who has turned their world around and brought so much more meaning to not only them but us as a community.
Sadly family can turn on you like wolves. I am just sorry that Lilla and her family had to endure such awful things.... but I believe they are stronger as a unit now perhaps?
Ash
Australian Traveller
Flashes of memories
At the moment I feel like a great big failure because all I am coming up against are brick walls and my cousin thinks I don`t want him to come over here anymore.... like I`m just making excuses. It is so hard when you cannot have a conversation with someone face to face.
I know when my grandmother was so sick for 18 months it really showed who her friends were. It`s amazing how people think that 1) these 'illnesses' are contagious 2) it will bring down their stature 3) it can make your life hell!
I`m just listehing to someone talk on the phone RIGHT NOW about this and it`s really ticking me off to the point of explosion again! Idon`t know why everyone is so narrow minded about this. AAAARRRRGGGGHHHHHHH IT REALLY GRATES ME!!!!
I am so greatful that you looked after your mum Lara - people who deserve to it should have it. And I`m so sorry that you had to go through that ordeal that no one ever bothered. That`s shocking.
Always good to see you!
Ash