Today, I did something that I haven’t done in years. I googled myself. Up popped links to my accounts on Linked In, Facebook, Twitter, & Tumblr. There were multiple pages of Amazon and Barnes & Noble links to The Tao of Rae. I figured, “Hey, why not give it a glance through at this stage of my life and see if I still feel good about it.”
I read the introduction and was mortified at what I’d put out in the world for people to read and judge me by. If anyone who was considering me for a job chose to preview the first several pages, they would know, before ever meeting me, that I have spent time in mental hospitals for suicidal thoughts. Who wants to interview someone who admits to the world that they’ve been fucked in the head a few times, right from the get go?
But let’s say that they don’t see the Tao of Rae out there, since I now have removed it from the “shelves” of Amazon and Barnes & Noble. They would still have a link to this blog. They could see all about my time travel seizures, about my time in mental hospitals and the abuse that I lived through as a child. They would see that I got a bug up my ass after the divorce and learned how to be a dominatrix. They would see that I can’t stick to a diet to save my life, and that I failed the bar exam, twice. Oh, and they’d see that I’m an avid advocate for medical marijuana. That’s exactly what you want in an employee, amirite?
Over the years, I’ve put a lot of deeply sensitive, personal information up on the web for the world to see. When I write, I don’t hold back. I’m just unapologetically, emphatically me… and now, I’m wondering whether or not it’s a good idea to share myself this way. At what point did I forget that it’s entirely acceptable to keep a private diary? Did I really think that writing about how MS affects me would help other people? I’ve gotten a handful of comments in the last 5 years. I’m not helping anyone here.
I started thinking about the kids that I hope to have someday. How would reading these things make them feel? Would they be happy to know about all of the struggle and insanity that I lived through before they were born? Would it embarrass them? It’s one thing for me to put my self out there, but it’s another if it has the possibility of affecting other people in a potentially negative way.
Don’t worry — I’m not remotely considering the idea of not blogging or writing anymore. I just think that I’ve been doing it all wrong. I sit on Facebook at least 3 hours a day, reading and commenting on friends’ posts. I post all kinds of interesting things and re-share links as well – but none of that sees its way here, so to the casual observer, it might look like I have stopped writing or interacting. That’s not the case at all.
I also have been thinking about the fact that this blog is called “In It For The Parking” because of 2 things: first, it’s my plucky way of having a good attitude towards having MS, and secondly, starting January 1st, in Chicago, having a handicapped placard no longer affords you the luxury of free parking. So, even though I have a placard that will occasionally be helpful in parking lots, I can’t really be “in it for the parking” anymore. I’ve lost my “good reason” to have MS.
More than all this, however, it just feels like time to start something new. Time to let all the pain and craziness that are contained in so many of these entries just disappear. Time to leave no residual proof of the difficulties I’ve been through, so that I can be known as the person who I am today… so that Past Rachael’s admissions don’t stop Future Rachael from having the opportunities that she deserves.
It’s time for me to stop letting my maladies define me. I am better than them.
Not sure how long I’m going to leave this post up before I take the blog down… but I don’t think it will be too long. Part of me feels like I should read from the beginning and just make certain entries private. I don’t like that idea much because I’ve found that reading old blog entries is often an unnecessarily painful experience. That, and I’ve produced well over 500 posts, so it would take forever.
I got rid of my LiveJournal in the blink of an eye. Didn’t even care that there was nearly 10 years of my life chronicled. Didn’t bother rereading any of it – just moved forward. And that’s what I think might need to happen here.
In It For The Parking 
I think introspection and reflection is a key piece of healing. I think that you need to read what “old Rae” wrote, because that was you. And you should respect the effort and the time it took to produce that stuff.
if you move, and decide to continue to blog about you life with ms I would love to get a link to your new blog. I too sometimes write things that make me wonder if it was the right decision, although I don’t have to worry about future children reading, because my 15,13 and 11 yr olds are all perfectly capable already:) I have appreciated you willingness to put it out there, although totally understand this decision as well.
Meg
bbhwithms.com
Please don’t go! By all means do what you have to for you, but know that you have positively influenced at least one person, me! I was diagnosed with MS(officially) about 6 weeks ago and it’s still sinking in although the nightly injections help make it real. Reading your thoughts on your blog was such a huge relief for me, thank you for sharing! This post made me reevaluate my own thoughts on ‘putting it out there’ – 2 years ago I spent 2 weeks in an inpatient PTSD clinic, I also use MMJ to manage symptoms. Oh, and I have MS. All of which, for the reasons you mentioned, don’t look great to potential employers, and is why I’ve laid low on social media about all of those subjects. But now you’ve got me thinking I had it wrong. These are all facts about me. They are certainly not the whole picture but they are important things to know if you’re to hire me. And I’m no use to an employer that doesn’t ‘get’ these circumstances; my attendance IS affected by these things, along with the rest of my life, and if I’m not upfront with this disease(and history of PTSD, etc) then I’m not only doing the potential employer a disservice(he or she will just think I’m a shitbird), but I’m also doing myself a disservice by trying to pretend for 40 hours a week that my facade is more important than my health. Perhaps I’m still dreaming but I’d like to think that when I’m ready to return to employment that there’s an employer out there that will appreciate all of the positives I bring to the table and be understanding of the challenges I face daily. Like your one post illustrated, just because I’m not climbing Everest(or able to work some days) doesn’t mean I’m not trying like hell. People don’t see the injection site welts and bruises or know the effort it takes to be on the Swank diet or the hours daily dedicated to trying to not feel like shit. But I don’t know that I could work for someone that judged me on that.
Anyways I really just wanted to say thanks for the blog and for sharing your personal info about MS, it really helped my day. Also you are a good writer and have a nice way of articulating all of this stuff – I’d hire you in a minute! 🙂
Wow. Your reply absolutely floored me.
First, let me wholeheartedly thank you for helping me to realize that my decision to go into the proverbial closet about my health is a very bad idea. For years, I’ve embraced radical honesty with regard to health. It’s made my life easier and happier. It has only been recently that I’ve been worried about the possible consequences because I’ve been trying so hard to find a way to return to the workforce. As I’m doing this, however, I’m experiencing more stress and thus more symptoms. Sometimes, you’ve just got to listen to your body. And right now, I’m thinking that embracing the life I have – complications and all – is a better idea than trying to create a fresh start as a closet-MSer.
Secondly, I want you to know that I wish I could give you a big hug. Having MS is one thing. Juggling MS with PTSD is another. I’m very glad to meet another compatriot in the war against having a shitty existence.
Based on what you wrote, I’m guessing you’re on Copaxone right now. I’m glad you aren’t dealing with injection site reactions. I took it for 6 years, and it was helpful, but I got all kinds of lovely bruises and fat-craters. Right now, Gilenya is doing well for me. I hope that your DMD of choice works well for you.
There was one other important thing that I wanted to let you know: The Swank Diet doesn’t work, so there’s no need to add that pressure to your life. My second neurologist (Dr. Barbara Giesser – coauthor of MS for Dummies) told me to stop doing the Swank diet when we started working together. Despite the proliferation of diets out there that claim to positively affect MS (many of which were designed by doctors), none of them have been proven as effective for everyone with RRMS. The data in their studies have not been repeatable by others. I’ve tried Swank, Paleo, Wahl’s Way… and the only one that was at all effective for me was the paleo diet – and it didn’t affect my MS as much as it helped me identify some foods that I have sensitivities to. (Removing those foods decreased inflammation and thus, I had fewer pseudoexacerbations.)
I really appreciate that you reached out to me. It means a lot more to me than I feel like I’m expressing here. Just know that you’ve made a big difference. I don’t think I’ll be taking this site down. I might just go back and get rid of some of the stuff on here that I would prefer people learn about me after we’ve met.
I hope you’re having a really great day, and I look forward to interacting again in the future. 🙂
I’m usually behind on my blog reading and just saw this, but I will be sorry to see you go.
Todd has convinced me to keep writing. Thank you for your message. I really appreciate it. 🙂