Perspective is the ultimate way to be able to put the things that happen in life into proper focus. How we view things has everything to do with how big a deal we make of some things. There are always three choices in any given situation: Give up, give in or give it all you've got. Time is going extremely fast and in just two days from now, tomorrow will already be yesterday.
I had been a Home Support worker for years before I was diagnosed with HD. This would prove to be a huge benefit to me and helped me to put my HD in perspective.
I was diagnosed 15 long years ago and I was quick to realize that even with having been given a death sentence with an incurable brain disease that I was still a thousand times better off than a lot of people I had worked with through my job.
I had clients, friends and relatives with cancer and painful arthritis. I had seen a lot of physical pain that others suffered that I never would, there is no physical pain and suffering with HD. I had a client who was blind as well, and no matter what, HD was never going to make me blind. I also had another client who had MD and she could not turn over in bed by herself or get herself a drink...once again things I would still be able to do with HD. Once I compared myself with these others around me all I felt so fortunate to only have Huntington's. There are many people out there who live with intense physical pain every single day who have it so much worse than me.
Perspective is a powerful thing. And because of all the years I spent looking after people who could sometimes be difficult I believe that will make me a better patient when the time comes. The last two years with my oldest sister has taught me a lot too. I am aware of so much more then I would have been if I had not shared all the craziness of the last few years with her.
My eyes are completely open to just how many possible blind spots there are out there HD wise. That knowledge will help me prepare my friends and family for it in the future. There comes a point in your relationship with an end stage HD family member where trust becomes everything. I have seen this and used it to try to reach inside her head on different days. Sometimes I have to remind her that I have never once lied to her and that her HD brain is either twisting something or making something up, I will then ask her to trust me. I never blame her for not seeing it I just try to make it click for her, but only when it is truly important.
It is so hard to believe I have been fighting this HD dragon for a whole 15 years. While my chorea has gotten worse there are other things that are not as strong as they were so I guess it is a trade off. It seems a fair trade as I would rather my body went sideways than my mind. I think I can safely say I have another good ten years.
My goal when I turned 40 was to make it to 50 and I am half way there now.
I have been wondering for a few years about something - and again with my sisters bad reaction to medication - about medicating people with HD. There have been different caregivers I have talked to in the last 15 years who had mates or family members with HD that took certain medications for the first time and had extremely adverse reactions too it and even caused additional brain damage in some cases, like my HD sister who is now in care. When I went to Camp Squamish in BC for the 5 day HD camp their nurse told all of us back in 2000 to be careful when we drank alcohol because she said that one alcoholic drink equaled three alcoholic drinks in effect to our bodies. So knowing that fact does it not make sense that whatever is in our body chemistry that boosts the effect of alcohol by three that it would do the same thing to most prescription medications? Would that explain the people who try some pill and have negative and sometimes irreversible effects? Would starting HD people at one third of the dose they would give to an average person prove prudent?
I got the title for this written piece off a cartoon I received. It had two pictures on it the first frame has an obviously ship wrecked man on a tiny island who see a man in a tiny boat almost to his island and he shouts "BOAT" the other man who is alone in the tiny boat shouts "LAND" and the title of it is....you guessed it....perspective. lol
To my friends and family member I am not someone with a disability, I am still just me, but with a few limitations. I can still do most things at this point though, I just avoid doing some of the things that I find more difficult to do these days. Heat still sucks a lot of energy out of me. The sun is both my friend and my nemesis in the summer time. My energy can be limited at times too. All I can do is my best and some days I have more to give than others; that is true of all of us though. A good friend once told me that life is 10% of what occurs and 90% of how you decide to deal with it. So true. The greatest challenge in living with HD is to be able to strike the right balance between accepting, adapting and fighting.
I am very proud of all the caring people who are in my life. They add so much to my confidence and sense of belonging. Some I have known as long as 30 years. I have a lot of people that I trust completely and I know from first hand experience with my HD sister how important that may be one day if it is them having to show me my own blind spots or if my mind is remembering something incorrectly. I count on them for tough love up the road too. Thanks to each and every one of you for the friendships you have shared with me and for being you. God determines who walks into your life...it's up to you to decide who you let walk away, who you let stay, and who you refuse to let go.
Todays new friend is tomorrow's family.
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From Marsha ...
Kelly and I have been friends for fifteen years ever since her diagnosis led her to pop in to the Massachusetts General Hospital HD chat room and met others dealing with Huntington’s Disease. We hit it off immediately and stayed in touch. I also met her mother, Annie, in the chatroom. Later Annie would lead a chat for caregivers at the HD Lighthouse and Kelly would begin writing for the Huntington’s Disease Advocacy Center. Some things have changed. Today, Annie has (sadly) passed on, the HD Lighthouse and HDAC sites have been combined, and the MGH chatroom has been closed but the friendship is still going strong.
Kelly and I have never met in person. We live far away from each other and I am a homebody who doesn’t travel much. I wish we lived closer but we email and talk on the phone. My initial impression of Kelly was that she was a caring person. She was always very supportive to others in the MGH and Lighthouse chatrooms. Her original career was as in home health care and she loved her work. That initial impression has been confirmed many times over the years in many ways.
As time has passed, I have seen other talents emerge. Her writing and her music are two examples. I also admire the way she works on her relationships. She lets people know that they matter to her and she is careful to allow open communication. I also admire her perspective about Huntington’s Disease. She doesn’t dismiss it or pretend It does not affect her, but she works around it to have the best quality of life she can and she does enjoy her life.
I know from Kelly’s writings that she has symptoms that she has to deal with but because I am not with her in person I have never seen them. When under stress, it may be difficult for her to communicate but when we get a chance to sit down for a nice chat, there IS no stress. We have a great time. It may be that writing her essays takes a little longer, but when I receive them, they are always wonderful.
Kelly has expanded my perspective on Huntington’s Disease. I know now that it is possible to have HD and still grow as a person. And because I see no change in Kelly – except personal growth – even though she does struggle with symptoms that I cannot see and hear, I am not distracted or misled by them. I now know that even Huntington’s Disease cannot change the essential person within.
With her permission, Kelly’s writings have been translated into other languages and appear in articles, pamphlets, and websites around the world. I am so proud that my friend continues to want to educate others through others. That’s who she is.