Thursday, November 17, 2011

Hazel's Wish

Wish Upon a Hero is a site that was recommended to me by one of my friends who also has the neuro-immune illness that I and my daughter are contending with. A couple of years ago I contacted Make-A-Wish on behalf of my daughter Hazel, but they never responded. I don't know if my appeal to them just got lost in the pile, or if they made a decision that ME was not sufficiently life-threatening to entitle my child to some comforts and distractions. I do know that people with ME die of complications (much as AIDS patients do) aged 20 years younger than average. Besides those two robbed decades of life, there's the loss of quality of life, meanwhile. Hazel turned 18 without having celebrated one birthday since her 13th well and healthy. Hazel officially became an adult without having enjoyed the normal activities and pursuits of adolescence. Hazel deserves to have a wish granted, so I've turned to Wish Upon a Hero in hopes that kind heroes will see and grant Hazel's wish.

You can take a look at her Wish Upon a Hero appeal here:  There's not room enough there to include all the details so I'm adding some information here that I linked to the WUAH appeal. So welcome, anyone coming to my blog for the first time from the WUAH link!

ME is Myalgic Encephalomyelitis, a chronic neuro-immune disease causing damage to our central nervous, circulatory and immune systems, with resulting intense pain and exhaustion and mobility impairment. My whole family of three - myself and two daughters - were all stricken by it in the Spring of 2007, when Hazel was 13. My younger daughter mostly recovered after a couple of years of illness. Hazel and I continued to worsen. No cure is known at this time.

Unable to work, we are on a severely-limited Disability income, below poverty level. We lost our home and half of our belongings. We moved several times in search of a sustainable living situation but everywhere there was either too high a rent to pay or too rural an area with limited access to vital medical and support services. We have finally returned to the county where we had our home prior to becoming ill, and are in a transitional housing program now which will help us find an affordable home within two years.

We still have hopes of becoming well someday as a small percentage of ME patients do, but when we had been ill for over two years, our chances of that diminished. So it has become increasingly important for us to create a sustainable life. We are in the process of applying for power wheel chairs to increase our mobility, we will need to look for and finance a van to transport those chairs, we're pursuing treatments that might at least reduce pain and slow the damage done by the disease, and if I can increase my health a little I might be able to do some work from home again.

Hazel meanwhile plans to complete her high school education and attend college if only at home and online. Beyond Homeschooling, this Bedschooling will require a powerful computer and, since Hazel's areas of talent and interest include music composition and computing, her wish is for components to build a computer that will allow her to compose, record and mix music with her keyboard and synthesizer. (Formerly a violin player, Hazel had to switch to keyboards because of pain.)

Building and maintaining her computer, and creating and sharing music, will not only give Hazel a creative outlet and an educational pursuit, but will also provide her with increased social contacts via the internet with people who share those interests.

The life of a mostly-bedridden 18-year-old can be depressingly isolated and dull. Hazel has so far born the isolation, pain, exhaustion, poverty and uprootedness with heroic acceptance and hopefulness but she really needs something more to go on. She'll be very grateful and make the most of the opportunities opened up by the equipment she's wishing for.

Here's the full wish list with links for internet purchase. If you would seriously like to assist Hazel, thank you very, very much from her grateful mom! And please visit the Wish Upon a Hero link for a way to contribute.

Thankfully yours.

Hazel's Wish List:

In an only vaguely sensible order:
ANTI-STATIC WRISTBAND (useful when you don't want to fry your computer)
Model: Belkin Anti-Static  Wristband
Price: $7.34
PROCESSOR (braaaaaains)
Model: AMD Phenom II X6 1100T
Price: $189.99
MOTHERBOARD (apparently a single parent)
Model: ASUS Sabertooth 990FX
Price: $189.99
GRAPHICS CARD (for graphics)
Model: SAPPHIRE AMD Radeon HD 6950
Price: $264.99
MEMORY (I keep forgetting things)
Model: G.SKILL F3-12800CL9Q-16GBRL
Price: $89.99
HARD DISK DRIVE (a useful pot to keep things in*)
Model: HITACHI Deskstar 7K1000.D HDS721010DLE630 (0F13180)
Price: $149.99
OPTICAL DISC DRIVE (apparently whoever invented them didn't know how to
spell disk)
Model: SONY BWU-500s
Price: $129.99
CASE (it's a mystery!)
Model: Silverstone RAVEN RV03
Price: $144.00
POWER SUPPLY (for supplying power)
Model: CORSAIR HX850
Price: $169.99
MONITOR (blackboard monitor Vimes**)
Model:  Viewsonic VX2450WM-LED
Price: $179.99
KEYBOARD (it says silent, but it's really just less loud)
Model: Das Keyboard Ultimate Silent
Price: $135.00
OPERATING SYSTEM (for being ridiculously overpriced, but necessary)
Model: Windows 7 Home Premium
Price: $177.03
MICROPHONE (for calling very small people)
Model: Shure SM57
Price: $99.00
WINDSCREEN (for screening wind, or possibly winding screens)
Model: Shure A2WS Windscreen
Price: $14.99
MICROPHONE CLIP (for the microphone to sit in)
Model: On Stage MY250 Shure Type Microphone Clip
Price: $4.35
MICROPHONE STAND (for the microphone to stand on)
Model: On Stage DS7200B Adjustable Desk Microphone Stand
Price: $12.99
DAW SOFTWARE (for making beautiful music)
Model: Propellerhead Reason
Price: $395.00
I think that's everything.  Total price: $2374.62 (more than I expected, sorry). 
It might also end up needing a few additional cables.   
Everything should come with everything it needs, but included cables are sometimes 
too short.  Won't know for sure until everything arrives.
Hazel (for making pointless parenthetical remarks).
*Winnie the Pooh reference
** Discworld Reference
(Copied verbatim from the list Hazel gave me, complete with silliness, 
because it shows what a sweet humorous spirit she is able to maintain!) 
Note: Apologies to those for whom the Wish Upon a Hero link won't work. The information there
is actually less thorough than what's here, but it provides a thermometer to watch our progress
towards funding Hazel's wish. If you would like to contribute, you can do so without going to 
Wish Upon a Hero, by sending your contribution via paypal to: 
Thank you! 

Friday, November 4, 2011

The Spins and 2 Helps for Centering

Forgive me if this isn't my most coherent post. I may try to re-write it later. I just want to get this down quick while it's fresh in my mind and before either the extreme illness of the past couple of weeks, or other demands of life, crowd it out. Though I write to breathe, I have not been able to write much lately, both because I am much more ill and because I have far too many obligations pressing me. On the rare occasions when I have energy it gets soaked up by paperwork and house keeping and doctor visits, so I don't get to write. But I want to jot this down quick now so I won't lose a couple of helpful ideas and also so I can maybe share them and see if they help some ME friends.

Okay, so, the story in brief is that though I have a ton of techniques for pain management at my fingertips, there are times when they just don't suffice. Lots of times. Tonight for instance, I got the spins very bad. Not surprising. A heavy-ish meal to digest, a ton of cramping pain and headache pain, blood loss from monthly flow, reaction to pain with endorphins in the brain while meanwhile my already low circulating blood flowed from my brain to my stomach for digestion---it all added up to a bad case of the spins on top of some hefty ongoing pain.

Very fortunately, my caregiver and friend Blair was over helping out. He has been coming two or three times a week and saving my life. He'd just done my grocery shopping and cooked for me and the kids and was washing up the dishes, and I was able to ask him for help, and he did some wonderful things for me; in particular he gave me rice and a memory.

First, he helped me lower my head and prop my feet up with pillows and a blanket supporting them, and made sure I was hydrated, and then when I told him I needed conversation or a story to help me keep time flow linear, he sat and talked with me and our conversation brought up these couple of different but very helpful things I want to share.

Blair's day job involves work with autistic children in schools. This meshes interestingly with work as an ME caregiver, because the two neurological diseases share many features. Blair will get me some terms later on; the point for now is that he recognized some things I was saying about what I was feeling with dizziness and from his bag of tricks as a classroom professional working with autistic children, he pulled something that was really helpful, and it was just a bag of uncooked rice.

If you ever have the spins, or just the feeling of craving weight on you; if you like your blankets heavy; if the lead apron at the dentist feels good to you; if gravity seems often to sit too lightly upon you and you can't ground or you feel the spinning sensation or light-headedness; if you wish you had a little pressure on your temples for that eye pain or that headache; grab a bag of uncooked rice or beans or whatever feels nice and throw that puppy onto your head, or forehead and eyes, or chest, or belly. Or hold it in your hand and squeeze it. I've had my rice bag in all those spots tonight. Right now it's on my head and without it I would not be able to type out these thoughts. What an amazing tool: a little bag of rice.

The other amazing help was Blair's memory of me, from back before I was ill. As we talked about the correspondences and differences between ME and autism I explained I had taken an online test that placed me firmly on the spectrum, though I know that if it had asked certain questions about pain and post-exertional malaise it would have differentiated me from an autistic person and pin-pointed this other category of neurological illness which I actually inhabit. But you see, I can sympathize greatly with the autistic these days because we share certain experiences of the world and its too-loud noises, too-busy rooms and too-bright lights.

I have a fair number of friends with whom I am still in touch (though I rarely see anyone) who remember me from other days, when I seemed a different person, but Blair happens to be the one who said it at a moment when I really needed to hear it, so I want to write it down and hang onto it for myself, plus I want to share it with you because maybe someone can give you one of your own: a memory of your self, back.

Blair said he knew I wasn't on the autism spectrum really, that it was the disease, because this me he sees now is not the woman whom he met, who went to film school and played elf-chess and was a member of a leper colony at the Renaissance Faire and in later years took her tiny kids to a big outdoor folk fest each year where all had a blast with family and friends. That woman was never a partier in the sense of drinking and carousing, but she wouldn't say no to the ballet or a Neville Brothers show. She had creative and academic energy and accomplishments, she danced hard in Senegalese dance class and came out glowing and ready to fund raise at the public radio station all night, she had social energy for family and friends and so many beloved activities.

What a great gift. I don't know which is best, my bag of rice or my memory through the eyes of someone who saw and admired me in those days. I am clinging to both right now, after he has left for the night, and I want every one of you who is suffering from ME to have your own bag of rice and your own friend's memory. Please ask someone articulate, someone you trust, someone who Knew You When, to tell you who you were. Just to remind you. Because we do lose touch with that person and while we are forced to let go of the activities, we maybe need to hang on to the lost self: the dancer, musician, athlete, community activist, worker, parent, teacher, student, the embracer of life we once were. May we each be blessed with at least one person who can share with us who we were.

I've just jammed this all out in free flow with no editing so I hope you see what I mean. This memory given to me from another's perspective is every bit as grounding and calming as the bag of rice on my head. That woman was real, and her abilities still live inside me if only as memories. I can neither dance nor socialize now, but the heart that did these things is still beating in here. Thank you, Blair, for remembering me and giving me back to myself. Thanks for this great bag of rice on my head, too. Thank you for spinning me back to center, where I can ground, and smile.

Got to go head down and feet up again now. That's all there is. I'm glad I jammed it out and hope when I read it again it will be saying what I meant!