There comes a time for many of us when we have to leave our homes and neighborhoods in order to seek out better medical care as our HD progresses. This is much more common for people like me, who live in small isolated places, to have to move to the bigger towns and cities to get the support and understanding that we need. As well as a need to be around other people with HD who are just like us. When you are the only person with HD in your town, it is a very lonely place to be.
For myself, it started with losing four members of my immediate support network all in a row, I lost about half of my emotional support in 15 months, and there was really no replacing them with anyone else. But it made me see how much I was missing especially in the way of female companionship. So I decided to move back to where I graduated from and to live by all of my 4 best friends again. It has been almost 3 months since I relocated and I have no second thoughts about my decision. I really had no choice in my mind.
There were no people with HD where I lived and there were no HD support groups. I have an overwhelming urge to be around my own kind, like other women and all my HD friends from the various 6 camps I went to. My "own kind" is also my close friends and family, those people who I really do not need to explain things to because they understand me on a level that few people ever will. There is such an incredible comfort zone with old friends.
Another big factor in my relocation was the fact that I did not qualify for any of the drug trials because I lived too far away for them to be able to monitor me. If ever there was a time to be proactive it is now because each step we take towards trying to slow down our own progression will hopefully buy us some time towards them finding the cure. It is a huge opportunity and there are a few different test drugs heading down the pike. We have nothing to lose by trying; we only lose if we do not try at all.
I am very happy where I am and my life is very calm, peaceful and full of things to do. I am staying very busy and it feels good to be needed by friends and family again. My loved ones remind me that I deserve to have the best medical care and unlimited emotional support to help me get through this as this disease unfolds at its own speed. I admit I still felt somewhat guilty for putting myself first and relocating. Then I remind myself that fate picked the cards that make up the hand I am holding, not me. I knew back in 1997 when this whole HD dragon first appeared in my life that up the road I was going to have to move close to a larger city. The hourglass ran out of time, and I made the only logical choice.
This is the first piece that I have written from my new living room; it’s a different computer but same writer. I really like that saying that goes “There are no problems - only solutions.” It is a life skill to be able to not tunnel vision in on the problem, but rather to give your energy and focus into finding solutions. Another saying I like is “How do you eat an elephant? … One bite at a time.” Huge problems can often be solved one bite at a time too. When one door closes another often opens but some people spend so much time staring at the closed door that they do not realize another one has opened.
Another reason for relocating is my best friend Lorna who is in the final stages of Huntington’s. I want to spend as much time with her as possible before she goes into an institution, my fingers are crossed but I am not hopeful. I have about 4 friends from HD camp that went into institutions and they were never heard from again, it is kind of like a black hole. Once you are in an institution the HD seems to really pick up speed. Maybe it is being around all the other people who are also losing their minds that speed up their progression. I don’t think there is any worse fate than a slow death in an institution. As my dear friend Lorna once wrote in her HD journal-“With Huntington’s one does not have a fear of dying, they have a fear of living.” A sobering thought. I am really looking forward to my first HD group meeting in June. I have never been to one before. When I found out I had HD and tried to find the nearest HD meeting place I was amazed to find out I would have to drive 24 hours straight to get there, then 24 hours back. That is why the computer, the HD Lighthouse and the HDAC were all such important things to me because it was more or less my link to the HD world outside of other campers and my own HD family members. And there I also made an HD family made up of people I have known online for about 10 years but never met. But it is the shared life experiences which makes a true family.
Deciding whether or not to relocate and when to relocate is going to be different for each person. I think as your needs become more, you then need more. Small towns definitely have their plus sides too, for example people know your family and people with HD have more acceptance in their day to day lives around townspeople. If your loved one gets lost someone will bring them back. Small towns are much safer in many ways. We all have different reasons for living in the towns and cities that we do. But anything can come at any time to alter our path and suddenly a place that worked for us for years no longer works. It can literally change over night. It is so very important to be around a support network that really understands HD. You can be a constant disappointment to someone who expects way too much of you, or a constant delight to someone who understands HD and expects nothing more than what you are capable of. It is all a matter of perception. But there can be no harder hit to one's self-esteem then to be a constant disappointment to someone.
Sometimes people get stuck in limbo and years can pass before they make a decision to relocate. Many HD people relocate to other family members first, then urban cities next, then facilities, and to institutions last. I have one HD friend who moved to a facility early because he did not want to move twice or have to make friends twice. He is one of my 4 missing friends. He fought the HD dragon for a lot of years but it seemed the moment he moved into a facility he quit fighting and the HD dragon won. His mind just kind of disappeared … and then he was moved to an institution.
Since my first year at camp in 2000 I have already lost two fellow HD campers Dean and Cory, and my friend in the institution will probably make number three. I have a few other HD friends who are also in the late stages who just might beat him to it though. Man I hate this damn disease.
There are a lot of things that I will never understand like why people I love keep dying. I learned a long time ago that some questions will never have answers. And some other questions are better off not asked at all. Some people ask way too many questions and other people don’t ask nearly enough. Like everything else in life it is a balance. One should be certain that they really want to know the answers before they ask the questions. Asking why to anything can be a double edged sword.
So remember to live simple, love generously, care deeply, and speak kindly.