Tuesday, June 16, 2015

I Volunteer!

I have had a chronic illness since I was 21, and it has completely shaped my life. I wasn’t able to have a full-time career, I always have to negotiate what I want to do with how much energy I have, how much pain I’m in, and whether I’ll have the stamina to finish whatever it is. This is not an easy way to live but I’ve made my peace with it – for the most part.
The one place where I’ve had the most trouble, and I write about this in my new book, is the feeling that I’m not living up to my full potential. I have a lot of mental energy and focus, but I don’t have the physical vessel through which to channel it. I have had a lot of part-time jobs, or customer service jobs that don’t require an excessive amount of time or energy. The one profession I have had, I had to give up, even though I loved it and was good at it – therapeutic massage. I have struggled with my self-esteem and with wondering what I could do to make my mark, or use my mental abilities.

Taking on Dad’s care was definitely a time and energy commitment, but I was fortunate in that he could afford to pay me and other aides to care for him. I was able to quit the job I had at the time, and take him and his business affairs on as a full-time job, without the full time hours. I thank the Universe every day for this opportunity because I don’t know what would have become of us if he hadn’t been able to pay me. I doubt I would have been able to do as much to help him – and we may have had to ask the government to step in.

Once I had placed Dad in a loving Adult Family Home, I had a little more time and energy to once again feel the pull of doing something, being something. I also wanted to serve in some way since I’d been so fortunate in my financial freedom. I decided to volunteer and it has been the smartest thing I’ve ever done. It has given me a purpose, a vocation, and sometimes a reason to get up in the mornings, stretch my sore joints and get going.

Now I know, more than almost anyone, what it is like not to have the energy or the time to do what we need to do, let alone what we want to do. If you are a full time, full-on caregiver, I know you don’t have the time to spend time with yourself, let alone volunteering. But, if you are doing it part time, or your loved one has been placed in a facility, or has died – you might want to consider volunteering. Whether it’s with an organization that represents the illness your loved one has/had, or another cause you feel strongly about, or your local food bank or other charity organizations.

I started out with hospice work, then switched to bereavement counseling, then to the Lewy Body Dementia Association as a call counselor. (And the best thing about that last one was that I could make calls from home, so I didn’t have to wear myself out going somewhere!) I really love being able to be of service to others, and I hope I’ve made a difference in some lives. If you have the time, or are facing the next stage of your life, I hope you consider volunteering – there are so many organizations and foundations that would be overjoyed to have your time.


  1. I'm so glad you found a way to fill your life with meaning again. I don't suffer from a chronic illness, so I can't relate there, but I was in a slump immediately after graduating from college. When nothing felt fulfilling, volunteer work became my top priority. I still think that's a large part of what shaped my career choices. I need to care for others to feel successful. Congratulations on your choices and good luck. http://cranesviewlodge.com

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  3. Hi Joy..My name is Josephine and I'm currently taking care of my mom who has Lewybody and would love to speak with you. If you'd contact me, I'd really appreciate it 917 912 3520

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