Well Hello

I haven’t written again for a bit, too much going on, my mind overwhelmed with life stuff. Today I just finished my appointment with the speech pathologist, my ongoing issues with my voice disappearing, vocal abilities, so was surprised that it was an hour long appointment, but I have been waiting 2 years. So ongoing appointments and work with him to try to help keep my voice going for as long as possible. I am thankful that my doctor persists until he gets me what I need. I am very grateful, given the state of our health care system at present.

I spent Thanksgiving with my brother and my late sisters family, the first Thanksgiving without her, it was hard, but everyone managed, and with about a half an hour or so left of cooking time, we lost power, but once that was all sorted we were able to pull off dinner, may not have been as it has been in years gone by, but we were together and that mattered.

It was lovely going for a fall drive, these are some of the photos, I kind of felt like it might be the last trip Pheobe is able to make, so I tried to make it fun for her. the picture of the mountain is the mountain where my sister lived.

The other thing is advocacy, recently and as so often we talk about why we keep advocating when little seems to change, but I believe we are making changes, however small and even if just one person at a time, any difference we make, any influence we have, is worth it.

There is another side to it as well, it is the connections we make, the people we meet. How it provides us purposeful and meaningful things to do. It gives us a reason to keep going, it stops me from just giving in and letting it take me. Maybe nothing will change in my time, but if we have made a difference to one person or to each other, because we have gotten to know each other then that is reason enough for me to keep advocating. I can’t look at the what has and hasn’t happened too much or if it has happened in the way I hope it would. I have to focus on the positive pieces it brings to my life. I have met people from around the world, I cherish each person and the relationship that became because of advocating. I have the utmost respect for the advocates who came years earlier, some who are still advocating, I understand and can at ti es feel frustrated that things aren’t happening fast enough, the clock is running for us, we know it, time is of the essence, sometimes we wonder if anyone else out there wonders about the pressure we feel to try to bring about change, before the disease takes away our ability to continue using our voices, whether literally or by other ways of the disease progressing. We all want change in real time, in our time, I try to remind myself that if at the end of the day I can have a small part in making sure change happens for the many others who are yet to be diagnosed, then my time since my diagnosis has been well spent.

I am exhausted all the time it seems, life is taking its toll, everyday things are harder for me, I hide it well for the most part. But I know, I can feel the differences the changes. I am ok with it all, life is life, we get what we get. I have tired to navigate it with as much grace as I can, I try to keep my hard hard days hidden away so no one has to see them. It is not always possible but I try. I am making incremental changes as I go along, trying to ensure that I continue to make adjusts that make my day to day life easier and simpler, less to look after, less clothes, less belongings, less of everything, so that what energy I have in a day, and it disappears quicker all the time, that energy can go to the things I enjoy, finding joy in simple things, finding in joy in the connections I have made, finding the joy in my advocacy. I hope one day we can all have the resources we need, that we can have people be willing to learn and understand, but I think as more and more young people get diagnosed those things will change. They will have too.