Managing with grace

Today, my mom gave me one of the best compliments, something that was the realization of everything I’ve spent the last year working toward.

She said that I am handling my illness with grace, especially considering how serious it is. She told me that the change in my attitude is “night and day different” from what it used to be and that my positivity is admirable.

The funny thing is that I wouldn’t necessarily say I’m overall a positive person yet. I still deal with depression and anxiety, much of which is caused by my illness (both in terms of physical, organic causes and my frustration over the ways it has limited me.)

But all along, this was the goal I wanted to achieve. I wanted people to be able to say about me that I was so sick but I didn’t let it stop me. I am dead serious that I don’t want to be defined by my illness. I don’t want attention for being sick. I don’t want pity.

I want to be seen as an overcomer. And hearing my mom say that she sees me that way felt like such a victory.

Having my serious relapse last year changed my life in many ways. It forced me to stop living in denial that I had advanced MS, for one thing.

After being back home, in my hometown with less healthy options available, and with my parents, who are great people but not as concerned with nutrition, has made me realize just how much I have changed my own diet. I tend to be critical of myself for what I still have to change, but I need to give myself more credit for how much I have already improved.

I also realize that a lot of the work I’ve been doing on myself, in terms of controlling my emotions and being more accepting of other people as they are, has really paid off.

I’m listening more to other people and talking less. I’m complaining much less. On the one hand, I’m incredibly embarrassed by how I used to be. On the other hand, I see how much the changes have improved all my family relationships.

My sister and I are actually mending fences after years of not being very close. I originally planned to only see her twice during the week I was here. By the time I leave, I will actually have spent time with her four times. She has initiated spending that extra time with me. And I know a lot of that is because of how I’ve changed.

The first time I saw her was to watch her kids (my little nephews) play soccer the day after I got here. It was extremely cold and wet and windy that day and that kind of weather hurts me to the bone. It causes me a lot of pain and limits my mobility and I felt pretty bad the rest of the day. To make matters worse, I didn’t even have really appropriate clothing for that kind of weather anymore.

But I didn’t complain or even mention that I hurt. I told my sister how cool it was to see her kids play (especially being there to see her 7-year-old’s first time playing goalie). And it really was cool for me.

I found out today that my mom actually told her after the fact about how much pain the weather caused me. I wasn’t going to mention it. And I think the fact that I didn’t do so made a huge difference. I’ve realized that complaining is just pointless, especially since you never know what other people are dealing with that may be as bad or worse.

I was so worried that my sister would criticize me for not managing my MS the mainstream way, based on things she’s said before. And to be honest, the subject hasn’t even come up. I don’t talk about myself much to her; I talk about her and her kids instead.

Overall, it has been a very nice visit in general. I’ve seen my 94-year-old grandfather twice and he’s my last living grandparent. He’s so happy to see me and that does my heart good. Apparently, he was asking my dad nearly every day for weeks “is she here yet?” about me, just like a little kid would. And when my dad and I went to see him yesterday at the assisted-living senior home where he lives, he gave me a tour of the whole facility. Everyone knew him, he seemed genuinely happy, and he proudly told everyone who would listen that I was his granddaughter visiting from Texas.

I think I had to work through a lot of stuff before I could come back to visit my hometown. I had to let go of my knee-jerk hatred of the town, as well as my Texas superiority complex. I had to come to terms with the fact that the people who hurt me over the years were all doing the best they knew how – even if sometimes their best was actually pretty shitty.

If I want grace for the mistakes and immaturity and occasional rudeness I exhibited for so long, I have to grant the same to others.

Yes, this trip was meant to be both a nostalgia tour and a way to finally put my painful feelings from the past to rest. There are sad things I’ve seen (like the home I grew up in, now burned and unoccupied and in need of being demolished.) A lot of the good memories of the past are still just that — they have to stay in the past because sometimes they’re not as good as you remembered.

But I came back, finally a grownup. Even if it took me 44 years to get to this point, it’s better than not getting here at all.

My mom thinks that the reason I’m still relatively mobile and doing comparatively well for an MS patient in spite of how bad my brain looks on MRI is because of my attitude. She thinks that if I can keep this mindset, I may not get significantly worse. Given the fact that all of my neurologists have said my MRI is so bad I should be in a wheelchair already, and that it’s unlikely any of the MS meds will help me, it is remarkable that I’m doing this well.

I really can’t be negative. I really can’t surround myself with people who are feeling sorry for themselves for their own suffering because it’s too contagious. I do become like that myself too when I’m around it.

I guess I’m showing that it really makes a significant difference to fight my illness every day, to make positive changes and to push myself not to give up. Life isn’t just about me, no matter how I’m suffering. I still have to make more progress in not letting my suffering show and in being in more service to others.

But it’s so gratifying to see that other people close to me recognize that the work I’m doing on myself is making me a better person. It’s making me a more valuable person they want to have around.

It was so vindicating to see that the work I’m doing is paying off. May it continue.

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