This might be the most difficult post I will ever write. This month has been brutal, to say the least. And I honestly hated being away from Adventures of a Bibliophile for so long. This has been my life for four years, and to not be able to read or write for the last few weeks was basically torture. Right now, I am writing this with a very attractive piece of medical tape covering part of my glasses lens, because that’s the only way I can see clearly (go figure). I know I don’t owe you this post. I know I can choose to not share this part of myself and just go on as best I can. But I want to share it with you, because I know there will be some changes coming both in my life and this blog. And I don’t want to hide.
I have multiple sclerosis.
And yes, it sucks. A lot. Right now, I am having trouble seeing things clearly. I can’t read much or drive. I’m wobbly when I walk. This morning, I fell over trying to slip on a pair of shoes while not sitting down. I was exhausted after spending twenty minutes in Target. I can’t sleep on my back without getting super dizzy. My arm hurts if I hold a pen for too long. My handwriting is sloppy and the number of typos I’ve made in the past couple of days is making me crazy. When I smile, the right side of my face scrunches up so much I look like like a lopsided Joker. And when I laugh, it’s even worse. My spine aches randomly. My bones feel weird. I’m now that person who looks mostly okay, but still has to take the elevator to the second floor because I can’t do stairs right now. I got out of breath trying to find my boots in the back of my closet. Sometimes it feels like there are bugs on me or I’m suddenly really itchy for no reason. And I can feel that, once in a while, my brain is just not working as well as I feel like it should.
Just this past week, I’ve dealt with (not) fun things like an emergency MRI, three ophthalmologist appointments, many consultations with neurologists, brain lesions, a botched injection in my arm, and the possibility of spending Thanksgiving in a hospital bed being injected with enough steroids to put me out of commission for weeks. I’ve had to come to terms with the fact that I’m now considered disabled. I am perfectly healthy (as proven by the many tests I’ve undergone in the last week), except for the fact that my immune system is attacking my nerves.
It’s been difficult to come to terms with. Because, if I had a choice, I would give up any part of my body that is not my eyes or my brain, without hesitation. I would rather not be able to walk. Or not be able to hear. All I want to do is be able to read comfortably and use the mind that I have taken pride in improving for so many years. It is hard to accept that my vision might not be completely okay. Or that I’ll have times when I can’t think as clearly as I used to or remember the right word (or how to spell it). Being intelligent and being a reader are such huge parts of my identity that I can’t comprehend ever having to sacrifice any part of that. But it’s something I may have to deal with. And that hurts even more than the physical pain. But I won’t let it define me or defeat me.
You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it. – Maya Angelou
Honestly, I’m mostly okay. This could have been so much worse. Yes, I have brain lesions. But I don’t have cancer. I have something that is going to make my life more difficult, but it is not going to take my life. And I am really lucky. Because I have a lot of doctors who are going out of their way to help me. By some crazy coincidence, I actually work in the one of the top neurology departments in the state of California. Every day at work, I see some of the best doctors who specialize in this condition. And the second they found out, they dropped everything to get me the best treatment as soon as possible without me even having to ask. I have a doctor who called me at 9:30 on Friday night to let me know the results of my MRI so I didn’t have to wait until Monday to find out. I have doctors who have called in favors, made special time to see me, and consulted with as many other doctors as they thought could help. And my dad convinced me to change to the best health insurance plan my company offers this year, so I’m glad that ended up working out.
To be honest, it’s kind of a lot. There are just a lot of doctors involved, and it’s kind of crazy. It’s weird sitting at work knowing that, downstairs, there are doctors looking at scans of your brain. It’s going to be a challenge to have everyone constantly asking about my condition when I really just want to work as normally as I am able. But I know how fortunate I am to have so much. I know I could be waiting months to see a doctor or not be able to get the treatment I need. I just don’t want to be the person with all the doctors appointments and the medication. But this might be my reality now.
I am not writing this post so that you feel sorry for me. In fact, the one thing I am dreading most is all of the sympathy. This is not something I did to myself. It is not something I caused or could have prevented. It just happened. Yes, it’s hard. But I want to get on with my life as best I can without having everyone constantly ask if I’m okay or tell me how sorry they am that I’m in pain. There are times I feel broken. And I have to adjust. But I refuse to give up.
If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward. – Martin Luther King, Jr.
I am writing this post so that you’ll understand if I have to stop posting for a bit. Or why this blog might not be as active as I want it to be. I’m writing this post to give you a glimpse into what I’m going through. Because I feel like bloggers sometimes go through a lot behind the scenes, and I don’t want to hide something that’s going to be a part of my life from now on. I’m going to have to take breaks and work harder to run this blog, but it is not something I am willing to forfeit. Stepping back for two weeks just proved how hard it would be to stop. So I’ll be here, just maybe not quite as much.
And I also just wanted to share what it’s like to have MS. I know I’m in the beginning of this, and there is a lot I still don’t know. I don’t know how my case will progress. I don’t know what my body will feel like a year from now. I don’t know when my eyesight will fully return or when I’ll feel comfortable reading again. I don’t know when this particular attack will end. But I’ll get there. And if you have any questions, or if you have MS, too, and have advice to share, I am more than happy to discuss as much as I can.
Really, thank you all for your support for all of these years. This blog and all of you mean so much to me. Thank you for continuing to support me even when I’m not always here. And thank you for your understanding as I move forward and figure out to live and read and blog with MS.
Fairy tales are more than true: not because they tell us that dragons exist, but because they tell us that dragons can be beaten. – Neil Gaiman