I'm 51 years old, and five years ago I was diagnosed as being in the early stages of Huntington's Disease. This was not an easy time for me. I was dealing with both the practical loss of not being able to do everything I have always been able to do, but also dealing with emotional grief as well, because I was going through a true grieving experience, grieving the loss of me. It was a scary time as well, feeling that the future was scary. My grief was very real, as it should have been, but I did wonder if I could ever feel happy again. I wondered if this grief would ever end, and it did. There is a place of acceptance and peace at the end of my grief, and I began to discover something.
I began to discover that HD was now beginning to make my perspective on life much bigger than it had ever been. I was meeting the most incredible people on the online HD community, at http://www.hdlf.org , my favourite place on the web and truly, it is not grief now, but truly a honor to be part of people's lives, in a way that I never would have, if it weren't for HD. Seeing the strength and compassion, the anger and tears, and the hope that each of us has for a cure. HD crushed me at first, but now, I can truly say I find great beauty in being part of this.
That is why I can truly say now, I am a rose, and truly each person with HD is a very special and beautiful rose.
I Was A Wreck
When I first came into the HD clinic five years ago, I was a wreck. I was just totally staring into space, and my head was so fuzzy and foggy. I couldn't read from paper any more, because of slow eye movements, but I could read from the large computer screen. I was having a lot of trouble climbing stars, had to hold the railing, and do two feet on each step, and I could no longer sew. I loved quilting, but I could not figure out the thinking process for it, and my hands kept shaking and dropping the pins.
Two years ago, I heard about memantine from my HD forum. I came to Dr G and said I want to try this, and he was like, yes, great idea! Within 3 weeks of starting it, I was able to finish a quilt for my granddaughter, that I had desperately wanted to work on for four years, but was completely unable to do. I gave her her quilt for Christmas that year. I have been sewing since, and I don't know how to say how thankful I am that I can do my one love again, which is my sewing. I can climb stars now with no hands, and I don't drop the sewing pins any more. Yes, I have problems, no I'm not cured, but Dr G said said to me on my last visit, that my improvement has been nothing short of remarkable. And I am just so very very thankful for the memantine, and what it has given me back, and I don't know how long I will have this improvement for, but I do know that for now, I've been given back some time to do some things I want to do.
Doing Something Special
So a year and a half ago, on my 50th birthday, I decided I wanted to use this time that I've been given back, to do something big, something really important to me. The first thing I decided was I wanted to make a special HD quilt wallhanging for the hd clinic. This has meant a lot to me to do this, and it hasn't been easy for me. Yes, I can quilt again, but not as easy as before, but, I can do it. For months and months I planned and tried to think what I could do that would be special, that would mean something, something that would say thank you to the doctors and researchers and staff, but also something that would look cheery and hopeful to others with HD. I wanted to make something that was made by a person with HD, so others can see what is possible with HD, and there is hope.
Part One: The Rose HD Wallhanging Gift
This is my gift to the HD clinic at UBC. You have no idea how thankful I am, and I don't know where i would be without the memantine, and how much i want a cure. I want the quilt to remind the doctors and researchers and staff, what someone with hd can do right now, and it will help remind them thankful I am, and help cheer them on for the cure. It's also to cheer up the waiting room, and just bring happiness to people.
So this is my quilt, that I designed, all by myself. And this is a poem that I made to go with this special quilt:
I am a rose, that has no stem, but I am not alone,
Many leaves surround and care for me, and protect me from life's storms.
I am a rose...and I have Huntington's Disease.
And someday soon, yes very soon, all roses will have stems.
Thank you to the doctors, researchers and staff, here at UBC, for all you do...you are making a difference.
by Barb Marshall 2009
So I'm really happy about this, and so proud, I'm so happy i was able to do this.
My presentation day finally came, on April 1, 2009. Dan and I took the train into Vancouver and I presented my gift to the HD clinic. All of the staff were there, and they made a very special to-do out of it, and that was so very nice. I got to do a little speech, tell them all about the quilt, and then photos were taken too, and then Dr. Blair shook my hand, and said on behalf of the whole team, thank you so very much. I was so very proud.
Part Two: The Rose 2009 HD Raffle Quilt
I decided that I wanted to do something good. Everyone has something good that they can do. I don't have to be a marathon runner for HD, I don't have to do the impossible. I can just do something simple that is meaningful to me, and that I know how to do.
And so I decided that I could make a raffle quilt for research. And I decided that I wanted this fundraiser sales to go directly to the Michael Hayden lab here at UBC. I'm really looking forward to seeing how much my fundraiser will raise, and so I will make a blog page just for my raffle quilt, and Carly at the HD clinic said we can make up some posters too, and put them up at UBC. And this year the world HD convention is coming to Vancouver in September, and Dr. Blair said it would be great to have the raffle finale at the world convention, and pick the winning person, so I'm very excited about this.
I also decided that I can do a raffle quilt each year, and that it will be an annual raffle quilt :) And so, each year I will make a quilt, as long as I am still able to. And when the cure is found, I will make a quilt that has roses that DO have stems.