For my daughter's 19th birthday in December, we bought her tickets to go and see Linkin Park, as they were playing in our city in the UK. We didn't really have the money but we knew how much this band meant to her, and she'd seen them years earlier with her Dad. The night before she was like a kid at Christmas, all pink cheeked, shiny eyed and giddy with aniticipation. Every so often she got up and came to sit with us, because she couldn't sleep. On the night of the concert it was good to see her so happy and excited, as she and her boyfriend set off. Needless to say when they returned after midnight , with t-shirts, a programme and lots of video and pictures of the band, listening to her gushing about how fantastic they had been, we knew that the money had been well spent. This will ... Read Full Story >>
I met my husband (my 2nd) back in 1997 at a colleague's wedding. We immediately hit it off and saw each other regularly. I told him all about my having IIH, and what it involved as well as the worst case scenario, which is blindness. I was also at the time a single parent to an 8 year old daughter. Although in some ways we were total opposites, we shared the same humour, values and ideas, and within a year we were married. It was the most fantastic day, and I don't know who cried more, myself or my husband. He became a fantastic husband, and father to my daughter (the only one she's ever known), and life was good to us. Two years on, due to my IH I lost my peripheral vision and depth perception. After having an Lp shunt to prevent total blindness, my mobility was severely affected, as the ... Read Full Story >>
When I was a young girl, I spent a lot of time with my grandparents, who lived in a community especially for the elderly and near to an old people's home. I remember when my sister and I played our instruments for them, which was something my grandparents had encouraged. They used to tell me that if someone elderly engages you in conversation, to make time for them, as you might be the only person they got to talk to that day. I've never forgotten this and still spare time to chat with an elderly person if they do engage me in conversation. So, when I saw the "make a suggestion for how your community would benefit from a $100" idea on this website, I immediately thought of the elderly! As one of the lucky people to win the $100 dollar kindness contest for my community (it converted to £56 in the UK), I then contacted my local community centre, and ... Read Full Story >>
A simple act of kindness can change a person's whole day. What was once dark, dismal, and gray, you can make gay. It doesn't take much effort to impart something magnificent. I must tell you that a kind word has much force, far from insignificant. A simple act of kindness can be the difference between roads traveled, for instance, to a troubled person needing a lift out of sinking gravel. If you could save a life or a soul by giving a heartfelt greeting, I know you would. Or, stop to say: "Are you okay?" to a soul that was needing. A simple act of kindness can put color back into a grimacing face; Move someone from self-destruction and self-hate, So they can find redemption in God's loving grace. It need not be your life's work, but it can give worth to someone else's life: Turn away from strife to ... Read Full Story >>
For 20 years I have been a sufferer of IIH (Idiopathic Intracranial Hypertension), and for the better part of it had never known anyone with this illness. It wasn't until I lost my peripheral vision and some mobility in 2001 that I turned to the internet.
Eventually I managed to connect with other sufferers of this dibilitating illness, and when it became so bad that I had to be early retired, the groups I had found became a comfort. One such group I am now a moderator in, and I'm able to share my experience of IIH with the many members in it, and especially with the newly diagnosed. I try to help motivate and inspire them, and where possible to help them smile. Most of all I try to give them optimism and to show them that despite this illness, they are still capable and worthwhile people.
I keep in touch with them through the group, and email, and several in the UK by phone. Knowing that I am helping these people from my own experiences with IIH, however big or small. It's the least I can do!
Sometimes the best kindness we can offer is to simply listen. They say talk is cheap, but in a world of technology, it seems that simply listening to someone else's voice, is secondary to the tv or game consuls.
While the internet is fantastic in the way it brings people together, and introduces people all over the world to each other, sometimes to be still, and listen to another voice who needs you to hear them, is the one thing that all these modern day devices can't replace.
There are times when a friend, child or relative, needs to share with you tales of their day, or they simply have a need to voice fears, hopes and dreams.
Listening is a big part of who we are, not just the talking and doing. It is something special that we take for granted every day without really thinking about it.
One of the greatest gifts we can bestow, is to be still and just listen!
I wanted to share with you a poem my husband wrote for me about living with IIH from his perspective. I must admit it moved me to tears.
How I cope with "our" illness,
I really just can't say.
Don't make too many plans,
Try and live just day by day.
Some days there'll be ups,
And some days there'll be downs.
Some days there'll be hospitals,
Drips,tubes and gowns.
I've always been quite mellow,
A chilled out kind of guy.
But it broke my heart in two,
When I thought that she might die.
There's one thing I am sure of,
It's "our" illness not our life.
The other thing I am sure of,
Is Heidi, my friend,my lover,my wife.
It's not like we've got cancer,
And pretty soon we'll die.
Just keep getting up each morning,
Never give up and always try.
Serving as a Moderator for an online IH (intracranial hypertension) support group has allowed me to share my knowledge and experience of living with IH with others. The group is predominantly American, and I have to say, the most caring and friendly people I've ever spoken to and one day hope to meet.
Recently some British members have joined the group, many of whom have recently been diagnosed and are finding it hard to get to grips with their IH. I've been lucky enough to get to know these members and have empathised entirely with their situations and feelings. So much so that I gave them both my home number and mobile number, in case they should ever need a shoulder, or just a friend to listen.
We often text now too and I would like to think I've taken some of their feeling of being isolated away from them -- they now know that I'm merely a phone call away. How fantastic are these technologies, when they give you the opportunity to be able to connect with people, and know that you are not only helping them in some way, but you are also helping yourself too by becoming a better person.