People keep doing this thing when they see me. They tilt their heads to the side and put on their ‘very concerned’ expressions, and they say, slowly and very purposefully, “How *are* you?”
I appreciate the concern. A lot more people care what is happening to me than I would have believed possible. My community has really surrounded me during this up and down time, and it has been absolutely amazing to see how gracious and kind and helpful nearly evk,lnmmmeryone has been. From posting memes on my Facebook timeline to cheer me up (Patty, you are seriously killing it here) to taking me out to get groceries when I can’t handle the world, to covering child care, talking me down when I’m convinced I’m going to die, organizing fundraisers, and leaving Rocky Horror Show tickets on my doorstep - and all the stuff in between - people have rallied to take care of me. I am so thankful and so lucky to have the people I have.
I would make a really bad joke and say that the moral of the story is that you should always build community so that if you ever get cancer, someone will buy you Rocky Horror Show tickets, but that’s clearly inappropriate. Then again, I already warned you when this whole thing started that I would be using a lot of inappropriate humor. So I guess it stands. Build community. Or else you won’t get to see Frankenfurter when you have cancer. And really, it doesn't get much worse than *that*.
Anyway. How am I?
Physically, I don’t feel much different than I did before my diagnosis. There’s a very long story here, but the short version is that I already had some health stuff going on, in large part due to an autoimmune disorder and thyroid stuff, and, it appears, potentially from some of the hormones this tumor emits that we just didn’t know about until now.
For awhile now, I’ve struggled with random bouts of fatigue, joint pain, and nerve pain (those latter two improve drastically when I cut gluten, for reasons I don’t entirely understand), as well as some difficulty in regulating my body temperature and weight.
So how do I feel? I mean, not like the picture of health, but not any worse than I did before. I’m gluten free now and the joint and nerve pain is usually gone, but it pops up here and there. Fatigue comes and goes, just like it has for the past few years. I still get these hot flash type things, which actually might be caused by the tumor. I’m the same size I was last month.
So overall, I still feel about the same as I did before. I’m more stressed and more tired, but that’s about it, as far as my body goes.
Emotionally, I’m struggling. Understandably. I feel, very much, that my life is on hold, and that it will be for a long time. Hitting that pause button has been a big loss for me in a number of areas. From the outside, some of them probably seem small or petty, especially considering that cancer is big and not even a little petty, but to me they are real. I’m having to grieve some things that I feel like I’m losing right now, and that’s hard.
I miss my gym a lot. That’s one of the things I don’t say out loud because I realize that it sounds small and vain, but to me it is not even a little bit small nor even a little bit about vanity. It’s hard for me to know how to describe how important it is for me to normal people with normal body image, but I can try. Some of my earliest memories of my dad are him food and body shaming me. I was body shamed all growing up and as an adult, and it only stopped when I finally just stopped talking to him unless I absolutely have to. I’ve been the fat kid, I’ve struggled through anorexia, I’ve had three term pregnancies and their associated weight gains, and right now my thyroid doesn’t work properly because my immune system is trying to kill it and I’ve been 25lbs heavier than I can accept for the last 3 years. At this point my relationships with food and with my body would best be described as “It’s complicated”. Or maybe “Holy hell, what a f*cking mess this is”. Either way.
But I can walk into that gym and I can deadlift more than my husband weighs, and I can do handstand pushups, and I finally climbed that f*cking rope all the way to the top of the warehouse style ceiling they have there, and I know I’ve put in the time and the work to have earned those victories.
That gym is the difference for me between loving and hating my body. It’s the way I reclaim 30 years of criticism about the way my body looks and turn it around into loving what my body can do and how those accomplishments feel.
In another 3 to 6 months, I’ll start over again. I don’t know how much work it will take to be able to do those things again after being away for so long, and with recovery from a decently serious surgery. I miss being there, and I have feelings I don’t really even fully understand about the loss of skill and strength I’m going to experience.
So yea, I’m having a hard time with that right now.
I also recently parted ways with the one freelance client I currently had. I write grant proposals, and given that I didn’t know what the timeline would look like for treatment/surgery and recovery (or even the extent of the testing and treatment required), I decided that the best thing to do was to take leave from them, give them all of their files, and make a recommendation for someone to work with through my illness. Grant proposal deadlines simply aren’t malleable, and without knowing when I would or wouldn’t be available or well, I didn’t feel it was appropriate to continue. The last thing I want is for the organization to miss deadlines because of my health, or for my health to suffer because I have to meet deadlines at times when I’m not well enough to really pull it together. To preserve the integrity of both, I stepped back for now.
That’s been hard as well. I didn’t make a ton of money because I didn’t work a ton of hours, but the extra money I did make helped. My client was a YMCA, and that’s also a factor that’s hard - it’s never been any secret that in the long term I hope I to return to a regular job in administration at the YMCA of Greater Fort Wayne, and keeping my foot in the door with an associated client is something that I valued a lot.
I was really looking forward to pursuing more work in the near future as my kids are starting school programs. Instead of moving forward, I’m moving backwards, and that’s frustrating.
BWNI (Babywearers of Northeast Indiana) is the other big identifiable thing that I want to give my time and energy to, but that I’m finding I can’t in the way I want to for awhile. In July, we finally had our first meeting of the Board of Directors and submitted our application for federal 501(c)(3) nonprofit status, which was approved.
This group is my baby. We started with a handful of families, and grew into *the* biggest and most comprehensive babywearing education program in this state, and it’s so important to me to protect that group and bring it to a point of long term sustainability. We are making a huge difference in cutting into the culture of isolation for early parenting and improving outcomes for moms, babies, families, and early maternal mental health. Early parenting was so hard and so isolating for me, and I’m passionate about giving new families resources so that it won’t be for them.
We’re going through an enormous amount of transition right now that really needs a lot of attention from me that I can’t give it. I’m frustrated and worried about it.
So, not to be all Debbie Downer, but those are some things I’m struggling with and grieving right now. They’re all things that have the value to me to be *worth* grieving, and I think that’s something to celebrate - that there are things that matter to me enough to be upset about not being able to do them. So there’s that. I won’t say every cloud has a silver lining because, holy sh*t, some clouds are seriously dark, but I’m thankful that there are some bright points here in what is a difficult time.
So, there’s your rundown on how I’m doing. Now when you see me, you don’t have to feel compelled to look at me very seriously, choose the emphasis on your words carefully, and lean in to make sure you catch every word. I so sincerely appreciate people’s concern, but at the same time I’m getting rather overwhelmed by it, because it’s coming at me constantly. Every time I go out in public. Every time there’s a family event. Every time someone stops at my house. It’s just getting hard for me to keep up with the emotions of everyone else - there are so many days when I’ll be doing better emotionally, and then I’ll be dragged right back down by a well meaning, serious ‘how are you’ that gets me thinking too hard about things and worrying again. It’s hard to keep track of what I’ve told to whom and how comfortable I am with having that discussion right then and there. Just this weekend I had the ‘awkward cancer discussion’ as I so lovingly call it, 3 different times, one of which took place in the middle of a straw maze, and I’m wiped out.
Know that I’m mostly doing ok, but of course have struggles. That’s pretty much the gist of it. I am updating on our What Friends Do page and Facebook as I have more information, and I’ll continue to do that. Of course, if you’re my best friend, you know when you can ask me what and if I’ll be ok with that or not ok. And if we’re having a long discussion, use your judgment. Small talk can stay small talk, though. If you feel like you need to say something, a quick “I’m thinking of you and your family” or “I’m following your updates” is awesome and lets me know you care and you’re there. But for right now I would really prefer not to have big discussions about the specifics of my health, my plans, my care providers, etc. as part of my small talk or greetings. I really appreciate everyone respecting that as a way to protect my mental and emotional health right now. You guys are seriously the best, and I couldn’t possibly ask for a better community support system. 
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