I recently reconnected with a friend of mine from college. She actually accidentally found me while searching for information about glioblastoma, and when she saw my name she contacted me to see if it was me. Very happy and sad moment. Happy to have reconnected with a formerly good friend from college, and sad because of the way she found me. Without knowing the story, it can’t be good. People don’t Google gliobolastoma for kicks.

Over the past week, I have received literally 16 emails from strangers and this friend asking me about what to do. How to deal with what they’re going through. Some are still taking care of their loved ones (wives and parents), and others are already dealing with their death.

As I wrote this answer to her, I realized that it may be helpful to others. I will always personally email anyone who contacts me back (as long as it’s not hundreds of emails a day, which I don’t see happening), but I wanted to reprint what I wrote. So here’s the unedited version. I never edit my posts, and the same goes for this letter to her. (She is married, but you can replace that with significant other, family, friends, etc.)

Dear friend,

I’m so sorry. I wish I had wise words, but I don’t. For me, the only thing that kept me sane was that I had started dancing ballet again, and I would go to the studio all the time. Literally 6 days a week (and I only didn’t go the 7th day because I didn’t have any classes I wanted to attend).

Running the dances and combinations through my mind is what would calm my mind down at night and let me sleep, however much I slept.

I was in a very different place than you are, though. I was alone, you’re married. On the one hand, you have support that I didn’t have. On the other, I was free to disconnect from everyone and do what I wanted. For me, being alone was definitely the right thing, and I don’t regret the fact that The Boy and I only got together after my mom died, but I do wonder what it would be like.

For me, disconnecting from everyone and going to the studio was what worked. I basically told my friends that I’d contact them when I could, and they would call to check up on me, but knew that I would eventually resurface. Everyone respected my request for peace and quiet, and not having to pretend around my friends was a relief. (As well as not fearing a sudden breakdown, which I hated doing in front of people.)

I basically learned to “lose control” at the end. I try not to cry in front of people, but if it happens, it happens. I just can’t control it anymore, and definitely couldn’t then, and it’s not that crying made me feel better, and talking about it didn’t make me feel better, but not holding it in – did. It didn’t make me feel better, but I wasn’t feeling worse for holding it in.

I wish I had a magic sentence that could help. I honestly don’t know how I got through it, but it involved being a lot quieter and a lot more alone than I usually am. I lost myself a bit, and I haven’t found myself completely again, but I don’t think I will. It changed me, there’s nothing I can do about it. And one of the things I’ve had to deal with is the fact that I’m not the person I was before and I won’t be again. I’m not that person who smiles and laughs all the time anymore. She surfaces, of course, but not as much as before.

I don’t really know what your mom’s prognosis is, and I hope she gets better really quickly.

The only thing I can say, and this is going to sound terrible (and it sounded horrible to me when my friend who lost his dad said it), is that everything leading up to her death, the whole time that we were taking care of her and the anticipation of the end, was the worst part. Once it was over and it was pure mourning, it got a lot easier. It’s like losing 100 lbs that you didn’t know you had. I hope to G-d that you aren’t in that place and that you don’t have to experience that, but know that it does end.

The pain doesn’t and the bad memories don’t, but it become easier to deal with.

My best suggestion to you, based on my experience, of course, and not anything else, is to find something that makes you happy, preferably a physical activity. For me it was dance (I danced for 14 years as a kid), for you it can be rowing. But being able to channel my nerves into something that made me happy, even in the weirdest way, helped me avoid spontaneous combustion. I know how you feel; I often thought I wouldn’t be able to wake up the next day, knowing what was ahead of me, but I did. It helped me a lot.

Also, the fact that it was a group activity (there are about 20-25 dancers in each class) helped too because other than a couple of them who became good friends of mine, no one knew what was going on with me. It was (and still is) a place that I could be free, that no one expected anything of me (because they didn’t know the “before” me) and their knowledge and acceptance of me was based solely on the “after” me. It eliminated having to pretend, and it let me be around people (excluding work, of course) without having to be around people I know. So I had the company, and I was out, but I had no obligations to anyone, and that helped.

If your husband is the type of person who you can cry to – do it. If you would rather do it alone – then that’s what you have to do. You can’t let anyone tell you how to deal with what you’re feeling. No one has the right to tell you that you’re doing it wrong. You need to know that. The only person who knows exactly how you feel is you, so you are the only person who can decide what you need and what’s best for you. What you need to do is (excuse my Swahili) say “F*** the world” and do what’s right for you.

So I guess my two suggestions are eliminating external pressures and finding a physical activity that you really enjoy (volleyball, running, rowing, pole dancing). These are the two things that, for me, were most helpful.

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