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Friday, July 23, 2010

A Plea for Help

I wish to start this blog in the same way my middle school students liked to start their essays: in this blog I am going to tell you why there is a donation button on my blog. And that, my friends, is why I no longer teach middle school.

Please note also, that before I begin I will try as hard as I can to avoid either ranting or indulging in self-pity, but both efforts may very well prove futile.

My current situation:

• I had pretty major surgery on June 17th. And though the entire point of the surgery was to make my life with M.S. more manageable, at this point the opposite has proven true. Make no mistake, things weren’t going swimmingly prior to the surgery, but – when necessary – I could do things like get in bed, transfer into and out of the shower, and put my socks on independently. Now, those things are only possible with the help of my roommate, Meg.

• Problem: Meg is moving to NYC. She wants to move as soon as possible, but has resigned herself to remaining in Baltimore through December at the latest.

• In addition to being one of my favorite people in life, Meg is also my built-in caretaker. I trust her implicitly. Even when I find myself in impossible predicaments, she is able to rescue me. She never, ever lets me fall, and she problem-solves like no one I’ve ever met. She loves to cook, bake and clean, and she can always, always make me laugh. Meg’s only “flaw” is that she refuses to take a compliment, and seems to think I’m joking when I refer to her as superhuman. I, of course, am dead serious.

• When Meg leaves, and when she visits her boyfriend in New York on the weekends, I am left with a few options: 1. Enlist the help of friends, 2. Move home imminently and give up on my so-called independence, or 3. Hire a caretaker. Each of these options is rife with cons; option # 1 is unrealistic, option # 2 is antithetical to my general Will to Live, and option # 3 is ridiculously expensive. One might wonder why health insurance does not help with the cost of a caretaker, and to this I have no definitive answer. My cynical self, however, posits that if one is forced to go on disability, one is no longer the concern of his or her private insurance company, and things like personal care attendants are thus covered by the state. This saves the insurance company money, and that – obviously – is the name of the game.

• The caretaking options that I have proactively researched cost $20/hour. Sounds reasonable until you do the math. If I hired someone for a minimum of 5 hours on the weekends, it would cost a minimum of $100, an excess of $400 each month. As a teacher, this is not an added expense that my salary can incur.

I am consequently relegated to ask for help. I love my job. Teaching offers me a daily reprieve from thinking/stressing/obsessing about M.S., and though I am fully aware that what I do is not who I am, my job – at least at this point – feels like the best part of who I am. It’s the part that makes me want to get out of bed in the morning, and the part that makes me feel like I still contribute something to this life of mine – even if Meg has to help me get my pants on in the morning. I cannot let this be taken away from me, but it’s going to take a caretaker-extraordinaire to prevent; and that is something, at this current juncture, that I just cannot afford.

18 comments:

Lena said...

And that, my friend, is why we're here to help.

Jenny, the Bloggess said...

I'm not donating to you. I'm *paying* you. I'm paying you for writing the post you wrote called "I (still) remember running" because it gets me out of bed in the morning even when I hurt.

Thank you for that.

Val said...

I don't pity you, because pity is infuriating, but I do feel for you. My dad has MS, and while we've been lucky so far with flare-ups, all I have to do is take one look at my grandmother to know what's down the road.

I'm unemployed, and have been for 2 years. But I'm on the line for a job, and by george, if I get it, I'm donating to you from my first paycheck. Not donating... investing in your mental health :)

Anonymous said...

Hey, I just came across your blog, and as a fellow teacher in a wheelchair, I'm really enjoying reading and getting to know you via blog! :)

I don't have MS, but I do have SMA (a form of MD... how's your acronym fluency? :), so I've been in a wheelchair all my life. I don't have any ability to transfer myself in and out of my power wheelchair, so that gives you some idea what my level of physical need is. But I'm teaching middle school full time, so I assure you, it can be done!

My thoughts are these... Have you thoroughly investigated what sort of assistance is available through your state? I obviously have normal health insurance through my school district, and they don't cover home healthcare. But there are state programs for "employed persons with disabilities," and that covers my caregiving needs.

I don't know about your area, but here in the Portland, Oregon area, $20/hour sounds like you're only looking at agencies right now. Agency caregiving is expensive! Because you're paying the actual caregiver, and the people that run things on the business end, and the overhead expenses... If you just hire an individual, you can pay between $10-15/hour.

There's also the option of inviting somebody to be your roommate and help with care needs, in return for taking some money off their rent.

But for sure, look into what your state has to offer! Contact the Department of Human Services, or Disability Services, or whatever it's called there. Many states have finally realized that they would rather pay for some home healthcare needs, and have you continue working and being a productive citizen, than have you unable to work, so the state ends up paying to support you entirely.

I hope some of this helps at least a little. Let me know if you'd ever like to swap stories/experiences/questions/complaints about teaching in a wheelchair! Blogger won't let me log in right now, but name's Kristine. :)

Rinkesh said...

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Anonymous said...

Where's the "spam" button for Rinkesh? Seriously. >.<
Best of luck, I'm sure the tides will change in your favor. Such a great person doesn't deserve to be in so much trouble.
Your blog is wonderful, and I'll be sharing it with my friends.

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Bodaciousboomer said...

Hi kiddo. I just found your blog through Jenny's. I'm on her hit list just like you! I've sent you a donation. I would've like to have sent more, but just can't right now. I will keep you in my thoughts though. I hope your weekend goes well.

Optimist said...

Hi there - just found you through The Bloggess. Happy to help!

xoxo

Bonnie in Houston

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Cait said...

where exactly do you live? i had a friend who was wheelchair bound, who was living at near a college. a lot of the nursing students volunteered to assist her at various times throughout the day, without pay. i believe the school might have helped her set up the program somehow.
not sure exactly how that could work, but that is certainly an idea, depending on where you live and if you would feel at all comfortable with something like that! i'm an occupational therapist and we have issues with horrible insurance all the time and getting home health care covered... i understand.
i would also look into some of the national MS societies, and things like that, a lot of times they can "help" in some ways. might be something else to think about.
can't wait to read more of your blog and i wish i lived closer so i could help you out!

Amy (from Catonsville) said...

Try the MS Foundation
http://www.msfocus.org/Homecare-Grant-Program.aspx
I care for my father who has MS and the MS Foundation helped me out with some respite care. It's really easy to qualify.
Good Luck!

Oshane said...

Ms. Hooks:
You are by far one of the most caring and loving people I know. It is unfortunate that this is something you have to deal with on a daily basis. I am truly honored to have had you as a tecaher and to even be in the same school that you teach. I will do everything in my power to start a schoolwide donation for you because you are truly an angel and God put you on this earth for a purpose. ~ Oshane, Your Student

Anonymous said...

This was one of the best things i ever read. You are an inspration To everyone Ms.hooks. Yes i called you that, I am indeed One of Your current students. I LOVE YU MS.HOOKS(:

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