Sunday, March 29, 2009

Summary of Previous Four Years

1. I began to teach myself to draw and paint.
2. I took a mixed media workshop in the Berkshires two summers in a row with great success.
3. I traveled to China with a group of teens.
4. I traveled to Japan on a grant from school to visit math classrooms.
5. I began knitting again and started a knitting circle in my home.
6. I went skiing with three girlfriends for a long weekend.
7. I had a best friend who dropped by so often my husband nicknamed her Kramer.
8. I had a stroke which an MRI revealed was from a tumor.
9. I had a craniotomy.
10. I walked every day for 15 minutes building up to a full hour.
11. I entered an invention contest and a postcard contest.
12. I lost both contests but was very proud of my accomplishments.
13. I returned to my job and discovered I had cognitive deficits.
14. My communication skills caused many misunderstandings.
15. My boss died alone on Christmas day.
16. I designed, organized, and helped make a memorial afghan for her.
17. I printed raffle tickets for the afghan and sold them earning over $3000 for a scholarship fund in her name.
18. I was diagnosed with a traumatic brain injury, with disabilities in executive functions, working memory, language, timing, and planning.
19. I was demoted at work and asked to move to a smaller room away from all of my colleagues.
20. I was granted the use of an assistant enabling me to continue teaching.
20. My daughter graduated from college and moved back home.
21. My father, Edgardo Vega-Yunque´ died.
22. I rented a studio to handle my father's enormous collection of books and writing.
23. I went to court to handle the estate.
24. I arranged for a memorial funeral for my father.
25. I donated all of his belongings to El Centro for Puerto Rican Studies.
26. Through therapy and rehabilitation, I learned new methods of communication.
27. Friends from work stopped socializing with me.
27. I have renewed some old friendships from college.
28. I spent part of my spring break in the hospital.
29. My art studio was finally completed so I could begin to make art.
30. My landlady told me she cannot tolerate my presence in the studio.


Anonymous said...

I've posted comments to you before and you've always sent me such lovely replies. I thank you.

I may have asked you before, so ignore the question if I have. Do you post on the forum of the Angioma Alliance? You are so eloquent and express yourself so well, I think your posts would help a lot of people.

I have been a supporter of the Angioma Alliance for over two years now, since my partner, Mark, suffered a devestating brain injury from his brain stem hemorrhage in Nov. 2006. His angioma is unoperable.

Mark is a writer and is very brilliant. Unfortunately, he isn't able to express hismself the way you can.

Also, I have just joined the board of the Angioma Alliance as secretary and I'm very proud of my position. I hope to help them with their fundraising.

I just forwarded your latest post to all his family and friends. Why is it they called so often and seemed so concerned when we all thought he was going to die, but they never visit now?

Yes, he's different now and isn't the same person they loved. Too damn f#)*&# bad, he's still Mark and he still wants and needs be their friend.

I hope reading your lasted post will shed some light on how his life is now, something that he isn't able to do.

Thank you. I think you're fabulous.

"If we only knew the real value of the day."

Hang in there. Any friends that choose not to stay are the real losers.


Aly V said...

Thank you for your kind words. I have not posted there but for no specific reason. I joined the Angioma Alliance when I was first diagnosed and reading everything I could but I never confirmed the email so I was not really a member. I recently went back and joined again. I guess I never posted there since I write here. I would be happy to do what I can to help the Alliance so if there is anything specific, please let me know.

Shayne said...

Aly, I don't know how much you know of my illness from 6 years ago, but besides a heart transplant, I suffered a minor stroke. Although my recovery from the stroke was secondary to the transplant, the long term implications from the stroke has been worse.

I also suffer disabilities related to executive function and I don't think I will ever be hired for an important position again.

Also, I found out who my friends really were and the few who stayed with me will stay with me forever.

It's never easy to become something you never were. It's horribly frustrating (and lonely). It is infinitely worse when you lose just enough to be bad, but not so much that you don't remember who you were.

Yet, everyday I live is another day I beat the odds. Live never was easy before and it has it's new challenges each day. Ironically, I always loved to teach (as a training manager, I taught adults). Yet since I lost certain cognitive functions, I find it way too taxing. I envy your strength. I really do.

Aly V said...


I have read your blog as well and I always appreciate your supportive words. I have come very close to giving up. I think there are so few people who understand. Your words sum it up quite eloquently: "It is infinitely worse when you lose just enough to be bad, but not so much that you don't remember who you were." I don't know what to do. I'm not finding the medical help I need or it's too expensive. I don't know if I am disabled enough to be "disabled." I am exhausted from fighting for myself.

Shayne said...

Aly, I would love to have a real conversation with you so we can talk about this some more. As you know, Allison and I are great friends, so it wouldn't be like talking to a stranger.

If you would like to talk, either send me your number, or ask Allison for it. Or you can just tell her to give her my number.

I'm here for you, if you want.

Allison Guerriero said...


Shayne is referring to me. He andI are friends. If you do want to get in touch with him let me know. He's very patient, and very kind. I think it would be helpful for both of you to meet (or tel-meet) b/c you have such similar experiences.

Aly, what I read on your blog makes me sad because I LOVE YOU SO MUCH!!! Shanye is a wonderful friend to offer to be there. And he'll be discreet if that's a concern.


Shayne said...

Hey Aly, Just wanted to check in and see how you were doing. I hope all is well.

Aly V said...

I like the anonymity of my blog. I can say anything without the guilt of burdening anyone who might be worried when they read my words. I know I have loved ones who read it and I feel your support. I am far from okay and that is okay.