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As a spoonie, I’ve come to expect and accept change.
I freely admit that I hate change. I’ve always hated it.
It stresses me out. Stress makes my sickness worse. I hate everything that makes my illnesses worse.
But somehow, I’ve turned my freakout timeline from months down to days. I need to vent and cuss to cope. It drives my friends nuts I bet.
But I cope. As an example…
Here’s just my most major life changing events of the last 5 years.
2012. Had severe bacterial pneumonia. Was supposed to die. Epic fail at dying cuz hi. Still here.
2013. Had to sell the last family house.
Still 2014. My sister & her two sets of twins under ten moved into the townhouse my brother & I lived in.
2015. My sister, her twins, my Mom & I all moved into a single family home. One that I didn’t care for.
Still 2015. I thought my spoonie illnesses were escalating because I was always exhausted. Couldn’t handle my workload & had to outsource. Turns out I had cancer.
January 2016. Formally diagnosed with CLL, technically a type of Leukemia, but treated as a Lymphoma.
March 2016. Diagnosed with Rheumatoid Arthritis during months of pre-cancer screening, poking & prodding.
Added to it the list of my ailments:
- asthma,
- anemia,
- spinal degenerative disorder,
- nerve damage/neuralgia,
- chronic cancer,
- chronic migraines.
April 2016. Started six months of chemotherapy and related infusions.
May 2016. Finalized the sale of one of my businesses to try and pay for extra cancer expenses.
August 2016. Back and forth about whether I have a secondary cancer or lung disease. (Still not fully resolved.)
Fall 2016. Mom abruptly moves to Texas. Since she’s my secondary caretaker and a nurse it’s slightly a problem since the normal recovery period for this type of cancer is such months.
February 2017. I realize I may not be able to go back to work full time next year. Or at all.
March 2017. Doctors start to get concerned that my health isn’t levelling. In some areas I’m actually worse than before the cancer, not just feeling worse because I’m post-treatment and it takes me longer to recover than people with normal bodies.
April 2017. I find out in a conversation in passing that the rest of the household is definitely moving to Texas in June. Not maybe in August/September. Guess I am too.
So yeah. If I didn’t adjust to constant major life changes I’d be dead, literally, from stress. Not figuratively. Stress can kill you, especially if it makes your illness go from an ongoing chronic but management stage into a crisis mode.
But I realized it’s not the change that is taxing my system.
Three of the top major life stressors is happening to me at any given time.
Moving, another major stressful life change has happened to me three times in the last three years.
And let’s not forget our good friend cancer, which I’ve know I’ve had actively for three years, and possibly had dormant since the 90s?
Despite these changes themselves being so taxing, the killer was not feeling trapped by the changes. It was feeling like I had to come up with this extra money out of nowhere.
It was working part time through all of it and having twice as many bills with 75% less money.
It was being so sick that moving made me want to throw up, but still having to promote a fundraiser.
(An unbelievably helpful fundraiser that my friends were so gracious and generous to out together in my behalf. I’ll be forever indebted to them and all who contributed.)
It was amazing help that I couldn’t live without but also exhausting in a time when not being exhausted probably would have helped me get better faster.
It’s so hard that when another group of friends hinted at starting another one, I told them it sounded great but that I didn’t have the energy to be involved yet.
So yeah, the change was hard but I could manage the change.
Feeling like I had to put myself financially last was the real problem.
The solution for me was to drop back from 15 – 30 hours a week to 8 – 10, and rely on my caretakers as they’ve been asking me to do.
Since I’m a recovering workaholic whose lighter weeks are 60 hours, this was scary to say the least.
At the center of my identity is also a caretaking fixer personality. So it really broke something inside me to have the idea that, for the first time since college?
I was only going to pay my own bills. I was not going to be the person people come to for help any time soon.
If I’m not that person, who am I?
If my worth doesn’t come from providing, then where?
I’m still learning. But if you have a chronic illness or cancer and have had to ponder this, I can offer this much.
You’re not any less important if you’re not the breadwinner. Proof? None of the people you won bread for are less important..
Your worth as a human is not tied to what success you have or enable for other people. Proof? We never think those less successful than us were somehow disposable because they weren’t as accomplished.
Your worth and value in the world is tied to something much more intangible. I don’t have all the answers yet.
But the clue to me was in the love people have been giving me. Most of the people who have reached out to me are continuing a cycle of love that one of us began.
And we often discovered each other because one of us was bringing something new and special to the world, and the other was appreciating it.
So if you’re looking for your self worth, start with your contributions.
However small and insignificant you think they are, they might mean the world to someone else.
If you want to see your value?
Look to those you love in action, and to those who go beyond words to express love to you.