I’m kinda struggling to keep it together and have not kept up well with responding to people in a timely manner. I am however getting some freelance work done again. Even if it’s only a little bit and my husband is still carrying the bulk of the load himself, I at least feel better for contributing.
I’m finally getting enough sleep, so I feel like my brain is starting to heal. (Although my relapse symptoms have not completely disappeared yet, they are diminishing a bit thanks to some cooler weather.)
I have some ideas of things I want to work on and almost all of them relate to writing what I really want to say. Being a resource for people, starting first and foremost with my immediate family. And trying to rebuild some kind of spiritual faith, which will almost definitely be of the Catholic variety.
I’m also slowly learning to make peace with myself and my illness and my place in the world. I had a long phone call with my mom yesterday, which lasted nearly two hours. I hadn’t had any contact with her in months and honestly I was really dreading telling her I had to quit my job and that I had applied for disability.
Yet she was so kind about it. She said she didn’t understand why I was so afraid to tell her and why I thought she’d be disappointed in me. If anything, she seemed more surprised that I had tried to work full-time, but said the fact that I had done so would likely help my case (since I had applied for disability once 2 years ago and canceled it because I thought I was well enough.)
My dad picked up the other line and cut in unexpectedly and briefly, just to tell me hello and that he loved me.
Something that was kind of an eye-opener and an affirmation was that I always envied my sister because she has so much more money than we do and is able to afford to do everything “right” for her kids’ success, like putting them in a ton of sports and introducing them to the concept of networking, which will surely help them get a job someday.
Yet my mom pointed out that my sister’s life is harder than it looks and the money is really the only good part. She also confirmed that my sister is prone to lashing out at people unprovoked, even her, so I’m not the only one on the receiving end.
And then the most important part of all that came from that conversation: my mom said that my husband and I are a lot like she and my dad are and were. Didn’t always have a lot of money and therefore had some struggles, but never went without any of the important stuff, and that there was a lot of love there.
I admit that for a lot of years I didn’t feel that love. Either I was too stubborn to recognize it or they had too many issues expressing it in a way I could understand– or maybe both.
I can see things from a different perspective now. I know that they tried their best, even if at times I didn’t feel like their best was enough. I see how my kids may have some of the same resentments toward me. But I’ve always done my best, even if they didn’t think it was enough. I’ve tried to keep getting better as a person and as a parent.
I see that a lot of my good traits come from them, like being anti-racist and thinking there are more important things than money and career success, and that a good marriage has to be at the center of it all.
They are sad that I’m so far away and haven’t been able to afford to visit since I moved, but they absolutely believe this is where I should be. And even if they can’t help me much financially or fix my MS, just knowing that they’re on my side is really pretty huge.
I can say that I also feel that my illness has robbed me of so much. It has robbed me of “so-called” friends, my ability to work full-time and the ability to live without pain. I find MS is just a frustrating illness with a mind of it’s own and sometimes as much as we try to control it, it is one of those uncontrollable things in life. Holly, you are very courageous and incredibly inspiring!