When I became disabled at such a young age I was still at the point of life where I measured my value by my salary, my career position, my good impact and service to the community, and even my housekeeping skills in trying to balance being a working wife. I’m not sure if that would have ever changed if I hadn’t become disabled, but I’ve struggled a lot with self worth, because I didn’t change my criteria for value even when my life and abilities changed so dramatically. I’ve carried so much guilt for so long over things that are completely out of my control, all the way down to being unable to do housework or even change my clothes sometimes.
Instead of viewing my bath and body products as a creative outlet that also meant that I could help others, I measured it as a ruler for success. If I couldn’t have my career, then I should make a success out of a home-based business, especially one that allowed me to be creative. However, it has never been successful enough to even turn a profit (partially because I was always experimenting with new ingredients that were thought to be helpful for various ailments, or buying new scents to see if they might fit in, or whatever else caught my eye, so my supply purchasing kept me well in the red *laugh*), and I judged myself a failure.
I failed at keeping my health, at being the wife I expected to be, at becoming a mother, keeping house, cooking, and even making my own business at least break even. More health issues have been draining me, I’ve been on bedrest a lot lately, and we’ve changed up my treatment plan to see if the new plan will help improve things (3-4 months before we know…seriously. You tell someone who has no idea what tomorrow will be like that it’ll be 3-4 months before we know if this works; that’s an eternity! Silver lining time – I get to hope that things will improve around Christmas!). With everything I became extremely angry. I became mad that my illness has taken so much from me, that the adoption didn’t work out, that our basement flooded when we had a big storm and lost power for an extended time so our pump couldn’t get the water out, that I felt I couldn’t make any extended plans (even flexible ones) because I have that stupid mortality clock ticking in my head, and super angry that I felt like a waste of tax payer money that was just waiting to die. That’s the brutal truth.
Thankfully I saw my amazing disability therapist a couple of weeks ago and not only did she have my blog posts to be able to gauge my emotional state, but she really got to the heart of my angers. Fear. That mortality clock is ticking because I’m afraid of what awaits me when my condition worsens, but she pointed out that healthy people die every single day, so my clock isn’t any louder than even hers is. And I, and those close to me, have learned how to make accommodations for how my illness has changed my abilities, so we’ll just change a bit more for anything that comes my way. My greatest fear though, it turns out, is my lack of being able to contribute and be of service; having absolutely no value anymore. It’s going to be a long work-in-progress to change my definition of what makes me valuable, but being of service has always been my top priority, and she said something so unexpected and profound that I’m still reeling, honestly. She wanted to know what I’ve been doing for a creative outlet since I haven’t been able to make products, because being creative is a huge part of my therapy and massively beneficial for my mental health, and I had trouble explaining my twist on digital photography (my photography on Second Life), so I showed her my Flickr photostream.
I had just posted a series playing on the movie theme of Gidget©, plus pictures of my little SL family, a scene recreated from the latest version of A Star is Born©, and my random ones with learning how to experiment with a special lighting program and editing. She looked through them with this beautiful look of awe, as if she was in a museum, and asked me if I realized just how much I contributed with my photography. She said they were like paintings that were hung up for tons of people to see (since it’s a digital forum) and I get to evoke feelings in the viewers, just like regular artists do, such as nostalgia, joy, and amusement. I literally got teary eyed over the concept, since I could equate that to how it was when I competed with my poetry and had people thank me for what I wrote about.
She went on then about looking at the value of what I give to the others in my life and even in my blog; how I work to help or enrich lives, no matter what my illness is currently playing. She said I also need to work at seeing myself through the eyes of others and seeing the value that they place on me (yet another one that’ll take me awhile *grin*). I have felt a huge shift in my internal attitude and a big, nasty, pile of guilt has fallen off of my shoulders. I may not be able to contribute in the ways that I want to, or deemed that I should, but I’m developing a creative talent that has the ability to provide joy and comfort to others. I was so angry at what was taken away that I didn’t see this blessing that God had given me to replace the vacuum. I didn’t see that even with my old criteria for value, I have value. I may not volunteer or do big acts of service, but I can still contribute and be of service to God by helping others. It’s a huge honor to me to think that my fun little Gidget© photo shoot on SL is just as meaningful a work of art in a gallery or museum. It’s quite an honor to be disabled with a chronic invisible illness and find at least some of my value again.
I so totally get you! With my last bout of Charcot, right after getting my pacemaker put in, and dealing with ongoing heart issues, my world changed. I couldn’t drive or even stand without excruciating pain. For a while I thought it would be permanent and I had to change my idea of normal and find ways to make myself feel worthy. I found ways to do things, just less things. Also I learned that small things make big differences. It doesn’t take much to give someone a smile, to send an encouraging word or even pray for others. Even if you can’t go out, you can learn to appreciate those in your life more, because face it, there’s a lot of toxic people out there and if you have good folks in your life you need to appreciate them. I wasted a lot of the time I was unable to move in depression and anxiety and panic attacks came on when I tried to go back to work, but I am coming through it. Even children die unexpectedly, but being over 50 and having major heart issues you understand that you are closer to the grave than the cradle. Coming face to face with your own mortality is challenging, but by finding ways to blossom in the new normal rather than fighting it, kind of brings a sense of peace. If I die tonight I will have lived a good life. If I die in 10 years I will have lived a better life, because I’m working more to make the days count.
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Beautifully said/written! I wish you hadn’t had to learn it this way, but it is truly the small things that make big differences when you adapt to your “new life”. I am so printing out the last three sentences to read every day, too. That’s exactly how I’m trying to change my perspective to! Thank you for the inspiring and sympathetic comment, and so many blessings wished for you. *hugs*