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View Diary: The Five Biggest Regrets of the Dying (258 comments)

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  •  interesting, maybe write more? (3+ / 0-)

    I'd be really interested to hear more about how how you're making the volunteer work and the disability work out ok. What's easier than you expected, what turned out to be more tricky than you expected, are there continuing issues, what kind of disability is it, etc?
    Our household is very interested in learning about these possibilities. Thanks for posting.

    •  oops (2+ / 0-)
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      indubitably, mamamedusa

      sorry, too much of a hurry. meant What kind of practical effects --like do you need a wheelchair -- not what kind of medical cause.

      •  My family doc said (4+ / 0-)

        when I got back from Mayo, "Wow, you have both of the two biggies--heart and brain."

        I'd been feeling a significant cognitive and energy decline during the 7 years of untreated seizures, but was still getting good reports at work and my docs kept telling me that it must be anxiety, know, just another neurotic anxious middle-aged female...

        The tipping point for me was taking a computer class and realizing that I was simply not retaining stuff that would have been easy several years earlier. Along with that I kept asking my family doc, "If everything is okay, why do I feel so ill?" That is when she sent me to Mayo.

        My disability is both cognitive and physical; I've become seriously ADD, my short-term memory is shot, and my energy levels fluctuate hugely. Some days I am articulate; some days I can barely frame a sentence, struggling with word recall like my 98 year old mom.

        So, to answer your question: I am (mostly) ambulatory, although I have issues with myotonia, too, which leave me limping and exercise-intolerant.

        My husband G does the heavy lifting in our joint role (Tanzania reps/admin for our denomination's Relief, Development, and Peacebuilding organization) because I simply cannot do the Admin pieces. I am just too scattered and unable to do good sequencing. That is one of the hardest pieces as it rubs my face in my cognitive losses.

        But, one of the biggest gifts (and surprises) is how much I can still do in worker care; our team was pretty beat up when we came with a couple of people on home leave for major depression, a couple of project assignments that were not working out, etc. I have some counseling background and that has come back.

        I can also do office support (not in our crowded office, however; I mostly work from home), especially picking up the things that G is not good at, like internet research.

        Hospitality is another key function; our house is a hub for our workers and we host guests, meetings, etc. I can cook again and I love hosting.

        Pacing is critical. I plan ahead, do prep work ahead as much as possible, and if it's a bad day, scale down my expectations. It's Africa; people don't expect a 5 course dinner anyway! A few times I've had to cancel things, but that's been unusual, thankfully.

        And, G and I work really well together, thinking through new projects and people issues, writing up the multitude of reports, etc. We are very lucky to have each other as we think quite differently and respect each other's perspectives.

        So, a loooong answer! We've been in this role since July 1st after coming beginning of March for language school. When stressed, G says, "But it's good stress!" I feel that way as well.

        There is no worse enemy of God and Man than zeal armed with power and guided by a feeble intellect... --William James

        by oslyn7 on Thu Dec 27, 2012 at 06:24:33 AM PST

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        •  Thank you for the long answer! (0+ / 0-)

          I have two people in my life with MS, and we always find it interesting (and heartening!) to hear stories from people who are finding ways to have the lives they want while dealing with disability challenges.
          You certainly have a story I'd like to hear more of. Even though it was a long answer, I feel like I just saw the teaser for a movie that now I want to see the rest of. Questions are just bubbling up! Maybe sometime you will feel like you have the time and energy to say more about what Tanzania is like in the part you're in, and which language you're learning, and what form your relief, development, and peacekeeping project is taking, and how you interact with the local politics, and how long you expect to stay, and ...
          Well, I know it does take a lot of energy to write. Thank you so much for what you have written. You and G sound like wonderful (and wonderfully and luckily matched) people.
          If you do sometime find you have the energy and desire to say more, I'm sure I'm not the only one who would be glad to see it.

          •  Wow, thank you, A. Grizzle! (1+ / 0-)
            Recommended by:
            Another Grizzle

            You gave me a boost on this pouring-rain and gloomy day!

            I'm sorry that anyone has to deal with MS. My sister in law has it and she diminishes year by year. It is a terrible disease.

            A few (hopefully short) answers to your questions: We live in the rain shadow of Mt. Meru, a nearly 15,000 ft peak not far from its famous sister, Mt. Kilimanjaro. We find this area beautiful even though it gets very brown in the dry season. Right now, there have been enough rains that it is brilliantly green and the ribs of the skinny cows and goats of the Maasai are looking (almost) sleek.

            We're struggling with KiSwahili, a gorgeously organized and logical language which has a built-in system for including foreign should be the next world language! But, 'struggle' is still the word.

            Our main projects right now include ongoing work with local partners who are addressing health issues (HIV/AIDS, mostly), building sand dams and encouraging conservation agriculture with a local Maasai Cooperative, and an exciting new peacemaking program responding to the dire situation of albinos.

            TZ has more albinos (1 in every 3000) than any other country and about 5 years ago some of the Traditional Healers perpetrated the horrific notion that a piece of albino in one's medicine bag would bring enormous wealth. It the evil people who have been killing and dismembering them; an albino body is now worth a quarter of a million US dollars on the black market. This, in a nation where most rural people live on @1.50 USD a day.

            One of our volunteers has teamed up with an albino woman who has worked with albino issues for years and they were able to orchestrate a meeting between an albino group and the Traditional Healers. Many of the THs are sick about this trade in body parts and are ready to jump in and disown any members of their association involved--and are willing to act as body guards for albinos and to turn in their own members who are implicated in these atrocities. (Children, especially, are targeted to have digits, hands, and sometimes limbs hacked off.)

            The albino community was very hesitant about meeting with the enemy at first, but with the sponsorship of our denomination's national General Secretary and the local Member of Parliament, as well as other safety measures taken, the meeting was a phenomenal success.

            We've begun to organize medical screenings as well; most albinos here are dead by age 30, usually from skin cancer as they have no protecting melanin to guard against this tropical sun. Eye issues are also nearly 100% in this population; kids who can't see the blackboard are marginalized in school and considered stupid so in this already floundering school system, albinos are at the very bottom with only a tiny percentage managing to get the support and resources to finish even elementary school.

            Do you hear my excitement and passion?! I only have this one life to live and I plan to live it as hard and well as I can while I can.

            I think the most powerful metaphor that empowers me is a Biblical one, where the Hebrew patriarch Jacob wrestles at night with the angel. Jake is on his way home to his alienated brother and years after he fled from Esau is still afraid for his life. In this encounter, he is permanently wounded not by his brother, but by this strange Being at the river.

            They fight all night but even though wounded, Jacob will not let go of him, but demands that the angel gives him his own blessing--not the blessing from Dad that Jacob stole from his brother years earlier.

            The angel does finally bless him--and also gives him a new name, Israel.

            Not sure of all the reasons I find this story so powerful, but it gives me an image to hang on to--to fight through my night of illness, to absolutely refuse to give up and let go of what has wounded me until I also find my own blessing, meaning, gift in it.

            A new name may be good, too, as I am certainly not who I used to be!

            Well, not so short this time, either!

            I'd be happy to write even've asked wonderfully leading questions! Want to Kos mail me and take it off this thread?

            There is no worse enemy of God and Man than zeal armed with power and guided by a feeble intellect... --William James

            by oslyn7 on Fri Dec 28, 2012 at 04:10:38 AM PST

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