From: Patti
One thing that emerged from the interview that you rarely address in your Ask Nicola blog is how MS affects your life. After reading And Now We Are Going To Have A Party, I thought maybe it was your British upbringing that causes you to downplay it so. So perhaps it’s the ‘right, let’s get on with it’ attitude that keeps you pushing through the good times and bad?
Maybe it is–though sometimes, for a day or two, I don’t push on, I give up. And maybe I sometimes just don’t want to talk about it in public. Here are a few reasons why.
MS takes up a lot of space in my life. Right now I don’t want to give it more by dwelling on it in this forum.
Illness is tedious. I realise that many people (Patti, this is not aimed at you, but at all the people who love to buy those memoirs of degradation and failure and heartbreak) love to wallow in their own squalor and adversity, but I don’t. I don’t drive people to numbness talking about my dreams, either. Or my therapy. (Perhaps that’s because I’ve never had any. I take it out on you poor bastards, ha ha.)
That river in Egypt has its uses. La la la.
Also, it turns out I have talked about it–many times. A cursory search* of my website turns up these posts and of this blog turns up these. And for now I’m done. I’ll let you know if that changes.
* I have search functions on all my blogs and on nicolagriffith.com.
I am manic depressive. I have taken lithium for 15 years. It keeps my highs and lows even enough for me to navigate the Nile. It also made me gain weight and screwed up my tennis, softball and basketball games. One of my greatest pleasures, drinking beer, is now restricted. On the other hand, I’m alive, andthat has made all the difference. I don’t spend much time talking about it. I still have a sense of humor and love telling jokes and stories. Sometimes I really hate the limitations, but they are not my life. Thanks for writing about MS.
Nicola, thank you for writing about MS. I’m not a fan of those self-indulgent memoirs you mentioned either. There are things about myself that I don’t wish to discuss with others; I just push on.I did want to tell you how much I have enjoyed The Blue Place, Stay, and Always, which I have read in the past week. You have a real talent to tell a compelling story and create a character that the reader can really be interested in and care about. Aud is a fantastic character, and I have hope that you’ll be writing about her again.All the best to you and Kelley.
barbara, it sounds as though you’re comfortable with your dosage–but not happy. (I mean, who in their right mind is ever happy to have to manage a chronic illness?) Limitations suck. We all have them. If we’re lucky enough to live a long time, we all become frail. People like you and I will be ahead of curve, that’s all: old hands at the not-perfect, not-immortal game.patti, you’re welcome. I think people who read those gruesome memoirs must be getting something from them (and I’ll be doing a related post tomorrow, so stay tuned). It’s just that I don’t. Writing my own memoir–which isn’t depressing–was hard enough, but, oof, if I’d had to really talk about MS I might not have bothered.As for Aud, the story goes on. I just don’t know when I’ll ever write it down.
I know exactly what you mean. Yesterday was one of those days when giving up was an attractive option. Today, I’ll try typing. I admire you so much!
penelope, ha, sometimes I feel admirable, and pleased with myself, too damn sexy for my shirt. Sometimes I feel pathetic and wimpy and want to snivel and drink tea. Sometimes I feel mean as a snake. Then I hit things. I’ve learnt to make them (mostly) soft, inanimate objects. The sofa in our living room is particularly good. It’s made of an aniline dye leather and makes a very satisfactory smacking sound. Aaah.
I mentioned in a previous comment that my youngest daughter(32) is paraplegic. She was born with Spina Bifida. She would have every reason to be bitter and angry ,and I have seen that so many times in my work, but she is not. Her screen name is “Fearless Female” and oh, does that fit! Last October she went back to Kansas to visit a friend. The friend’s husband is a small plane pilot. They decided to fly from Olathe, Kansas to St. Louis for dinner. Mind you, my daughter cannot stand nor walk. She transferred onto the wing of the plane, scooted up to the cockpit, and somehow got into the passenger’s seat. I have a picture of her with a headset on while she co-piloted the plane for about 10 minutes. All she could talk about was how beautiful the sunset was on the horizon as seen from above the ground.She has lived in her own apartment for the past 13 years. I gets calls at 2AM from jazz/dance clubs or the Hard Rock;she travels all over town on the city transit, and she is going to Las Vegas on the 26th with two of her friends who are also WC users. My best friend is going with them. Bless her saintly being.Does my daughter ever get depressed? Go to counseling? Of course.My oldest daughter(36) has BiPolar Disorder, so Barbara I know of what you speak. The meds are a bummer,especially to someone like my daughter who has always been athletic and active. She is struggling to return to teaching or to work at all.We are all out “there” with our private stories. And we all do what we must to give it a go for another day. I get weary sometimes from trying to answer the ” I don’t know how you do it” question from well meaning folks. My answer is either you “do” or you “don’t”,and with the latter choice, give yourself over to “becoming” the BiPolar Disorder, or the MS, or the whatever it may be.My chestnut hair has given testimony to all this with the cut wire silver growing denser with the years.Sorry, Nicola for the litany. I almost did not post and won’t revisit this part of my life again here. Just my two dinars worth…
POST SCRIPT: I just want to clarify the being “bitter and angry” in my last comment. I don’t think I expressed that well. Anyone has the right to be just that. All I meant was try not live there and make it a permanent address.I have nights where I lie in bed counting the days to retirement and fantasizing of buying a motorcycle, strapping down my little dog,cutting my hair short and spikey, and heading to Sante Fe to spend my end days among a colony of Lesbians!
linda, all stories welcome. And I think I know what you mean about bitter and angry. Only saints (who are weird creepy people) don’t go there.
You are admirable, Nicola. Really. I’m such a wimp, I was ready to give up after a week of constant migraines. I couldn’t keep any food down or sleep. That was it for me. In a flash of despair and mad genius, I managed to numb my whole head with VapoRub, snap out of the vicious cycle and save my soul. I literally hang on to my cup of coffee for dear life, since it keeps the monster at bay.I got that sense of weariness from “Song of Bullfrogs, Cry of Geese.” I strongly identified with the narrator of that one. I’m always telling people that when The End of the World comes, I want first-row tickets because there’s no way I’m hanging on ’til the end. But then, human beings can surprise us. To think there’s people that find the strength and determination to go on in the most trying situations…
I read interesting books by good writers. Adversary as subject is no guarantee of either. Sometimes I think content is the least important part of a book–there is a wide chasm between having a good story and writing it. Everyone’s story is important–that doesn’t make it important to everyone else. I am baffled by by the popularity of addiction memoirs–I know plenty of addicts and generally the stories are pretty damn boring, addiction is almost inherently repetitive.
karina, oof, you have my sympathies on the migraine. I haven’t had the throwing-up kind for years, but I’ve had the go-blind, be aphasic afterwards kind (that was terrifying; I thought I was having a stroke–such a drama queen…). Funnily enough, what works for me, migraine-wise is massage and beer.anna b, I’m so with you on the addiction story thing. People think it’s exciting, dangerous, wild; it’s just tedious and squalid. Boring.
Lillian was just diagnosed diabetic. It’s exhausting figuring out dosages and diets and schedules, but we’re shrugging and getting on with it. Because it’s either that or be bitter, and we just don’t have time for it.But truth to tell, we frequently use you and Kelley as inspiration!
Oh, I’m sorry to hear that. I hope you can control it with diet.