Posts Tagged ‘grief’

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My friend Eric is caregiver to his wife Teresa, and he is raising their two boys. I think being a true caregiver is not a job description so much as an attitude of the heart. I have learned so much from him, about life and friendship, and about the true heart of a caregiver:

Sometimes I do my best blogging on the HDAC, and then I send it over to my blog, and that is what I am going to do with this one. A couple of weeks ago, I wrote about my good friend Gordon, his daughter Kirsty, and his son Michael. I have more friends that I want to share about too. I want to thank all of you for making this place such a great place to be. You all mean so much to me, but there is one person in particular that I want to thank tonight, for being such a good friend to me when I needed one. Yeah I know, he’s not going to like being in the spotlight, but you know what, I want to anyways…smile. Here is a short article about loneliness, then I will talk:

Reader’s Digest article on loneliness and our health:

“According to recent study by Reader’s Digest, lonely people seem more likely to die of heart disease than do the socially active. The study allowed for medical and life-style risk factors-age, smoking, physical inactivity, and signs of heart disease-and found that the subjects with few social contacts had a 40 percent greater risk of dying from cardovascular disease than the rest did.”Loneliness ” said Newsweek Magazine in reporting a similar study, ” can speed your demise no matter how conscientiously you care for your body.” One study of elderly heart-attack patients found that those with two or more close associates enjoyed twice the one-year survival rate of those who were completely alone. “We go through life surrounded protective convoys of others,” says Robert Kahn, a University of Michigan psychologist who studied the health effects of companionship. “People who mangage to maintain a network of social support do best”.

My old world was gone, and this new world of HD was lonely and frightening:

Huntington’s Disease has turned my world upside down. I was diagnosed three years ago as being in the very early stages, memory,cognitive, and some emotional issues. I had been very active in my church, and had a huge social network of friends, but over the last five years that has disintegrated, as I became more socially withdrawn, having trouble making phonecalls, could no longer drive, could no longer focus on conversations that lasted more than a couple mins, and the list goes on. Suddenly HD was putting me into a whole new world, where none of my old friends were. I was so alone. No phone calls, no friends, and I was in grief. I was losing the old me, I was angry and I was terrified, and I was alone, and I had a lot of questions. Coming to the HDlighthouse and the HDAC has been the best thing that has ever happened to me. Caring people, a wealth of information, and knowing that you’re not alone in this. But more than that, I’ve met people that I never would have met, in my old world.

Tired and angry, and needing a friend:

But, a year ago, one person in particular, Eric, became a good friend to me. I was terrified, and I was angry, at HD, for taking away my life, my personality, my friends, but more than that, I was tired of being angry. You can only be in grief and angry for so long, before you even get tired of that. Anger is tiring, and draining. So I wanted to know if there were any good things, any benefits to having HD, so I could let go of this anger. So I started an HD pros and cons thread, and asked people to give me the pros and cons of HD. Well, everyone gave very true and emotional answers, and they gave pros and cons. But the best answer for me, came from Eric. This is what he said:

This is Eric’s story, from May/06, the heart of a caregiver:

“People succumb to HD. Given that downside I have more than a few positive things that have happened through the course of dealing with HD. HD has allowed me to know true compassion. I saw my wife exercise it with her mother. I was able to learn it from her and and eventually show it to her when she needed it. My children have learned it also. I have watched as Teresa has exercised grace in her illness. We as a family have become closer, not the ships passing in the night like so many families become, and that we might have become also. I feel God has bestowed upon us a true purpose in our lives. Teresa has become the tool for three better people. The boys and I have a purpose in caring for someone in her greatest need. I have learned humility as have the boys. We have seen people from doctors and nurses, to teachers, to the people of our town and people in our church offer what they could when they could. We learned what matters in life and what doesn’t. Small moments in time have become larger and more enjoyable. We have all learned to ask for help when we need it. We learned to accept it from those who benefit from giving it. I also have seen a true humanitarian effort on the part of this community. I have seen so many people give beyond what any normal person would give. We have all seen thoughtful well wishes..true compassion..a sharing of ideas, thoughts, feelings, and experiences, all for the benefit of someone else who needs it. I think picking out what sucks is pretty easy. Bad things have happened for sure. But for me at least, bad things happening hasn’t meant a bad life. I get to hear “I love you”, from the boys and my wife more than I ever would have. I get to say it back and mean it more too. Barb…in your tally you may not want to count all that stuff. I skewed it. But you have to count this on the pro side…I can count you as a friend thanks to HD.”


I guess I’ve never really questioned why me, like why was I chosen, what did I do to deserve this, maybe. For me, my question has been why anyone, why this disease. I guess maybe a good question might also be, why not me. I think in life things just happen, and we don’t really know why. I know for me, I don’t really feel like God did this to me and others…I know it’s very valid for some to wonder that….I also don’t think some great enemy out there did this personally to me. I think sometimes in life, things just happen….I was feeling angry, and the only person I knew how to be angry at was God, and God allowed me to do that, because He knew I needed to be angry, for a time. But I was tired of the anger now, and wanted some hope. Eric’s post really touched my heart, and gave me that hope. He did not speak of tragedy, he spoke of HD as being the opportunity in their lives to show compassion. I was so jealous, I was so jealous that he could feel that way, and I wanted that too. I wanted it so bad that I decided to accept that HD had been brought into my life, to not be angry any more, and to trust God again. Eric helped give me back my hope, and that is something that thank you does not even cover.

Taking away my fear:

Eric continues to be a true friend to me, and to so many others here on the forum as well. Recently, when Gordon’s son Michael passed away, it was a very very tragic time for many of us. Eric did what Eric always does. Checking up on people, making sure everyone was OK, just doing what he knows how to do, just being a friend, to anyone that needs one. And when Norma and Scott both passed the following week, it was too much for me, and I’m sure many others. But Eric continued doing what Eric does, being a friend. And when it was all suddenly too much for me, and I broke down crying, and told Eric I was terrified, because Scott was in a lot of torment his last few months, and I was terrified, not of dying from HD someday,
but that I might be trapped in torment, Eric did what Eric does best. Convinced me that that won’t happen to me, and convinced me I was living in a tomorrow that is not going to happen to me, that I need to live in today. How did he convince me of that? I dont’t know. I guess because he is Eric, and he is my friend.

Being a friend:

I once asked Eric, how do you do so much for so many people? I said, aren’t you scared of burning out? He said, well first, I dont do much. People are lonely and scared, and they just want someone to talk to. He said I’m awake 18 hours a day, there is a lot you can do for others in 18 hours, and he said, it doesn’t take much, a simple email, let them know someone cares. I don’t do anything special, it is easy. And he says, I will not burn out, because I only do in a day what I can do. Nothing more and nothing less. It’s easy to be a friend he says. He says I am only paying back friendship that was given to me when I needed a friend. Thank you for being my friend Eric, and for teaching me how to be a friend too. You’re the best Eric!


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Jan 19/07 Sad

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I’m so very sad this week. So many people passing this week, and all at once, and it’s just hard.

It’s so many, all at once, all at the same time, and it’s just very very shocking, and i’m just being honest that this is so very hard to take in all at once, and it’s frightening. It hits very close to home, and i’m sure i’m prob not the only person feeling this way. So good to have all of you for my friends. I guess hd is terminal, i guess, guess we’re being hit with it hard this week, i guess, does someone up there think we need a reality check on all this? I dont think so, but sure seems like it, i dont know. I guess stuff just happens, nothing can do about it, but would be nice if there was a cure. It’s ok to feel sad, it’s a part of life, and it’s ok.

I will remember three special people…….they are free now, and that is good, and I will remember them with a smile.

“Every good gift and every perfect gift is from above”

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