I haven't been home for Christmas for 2 years now. This is practically unheard of--I hadn't missed a Christmas with my family in 30 years--my entire life--up until that point. I was thinking about why I don't go home anymore today, and realized that I had nearly forgotten the real reason I stopped going home for Christmas. Aside from the cost ($3K), and time commitment (at least two weeks of precious NZ summertime and time off from work), the real reason I swore never to come home for Xmas again was this incident.
I'm so happy that I have almost forgotten that experience, and what it means that I forgot. It really was one of the worst of my life, to have someone I love so much think that I was so threatening or dangerous to her that she needed protection from me. And I'm sure it was a low point for her, as well. The fact that I've almost forgotten also means that my sister has been doing well for quite some time now, and I haven't had to write any sad posts about her for a long time. This period of sanity is the longest she's had since she got sick at 20 years old in 2001. Before, she would be OK for about 6 to 8 months, and then BAM, hospitalized again, for at least 3 months and at the longest, 8 months. Her bipolar episodes used to reoccur every April (there is a trigger event then in her past), but it at least skipped last year.
I'm also happy to report that emotionally, she is doing well. She still lets people take advantage of her kindness, and is working on that. She's taking her meds and has been through the program that she was accepted to last year. She is still on disability, and is living in the 'independent apartment' section of the program that she is in--the top level that you can get to--and has a (crazy) roommate (welcome to the club, eh?). She also has a small part time job helping out around their facilities, getting new people settled into and comfortable in the program. She's also taking one college class at a time at a local community college, paid for by a federal Pell Grant, and wants to further her associate's degree with a bachelor's degree in sociology, probably. She's still kind of all over the place with what she wants her major to be, and she still needs help with her classes--she has a note-taker to help her, because she has ADD and some other learning disabilities. She also has a long-term boyfriend, one who is also in the program and lives next door, and he seems very kind to her. She has a $45 hospital bill she is slowly paying down, as well as a credit card bill >$1K that my mom paid and she is repaying my mom for. She also, very cutely, has a 'NZ Fund' that she puts $5 into every once in a while. I think that is up to ~$100 now.
I'm so grateful for all of that. It seems that, while slowly, she is getting her life headed in the direction she wants it to go. It's nice that she finally has some control over that!
She still has some struggles, though. She lamented that she doesn't have any friends there anymore just last night. I think this is because she is doing so much better than most of those other people, emotionally, but still the outside world, the 'normally ill' (vs mentally ill) people, as she calls them, don't accept her because she's not quite there yet and because of the HUGE stigma on mentally ill people--all of her friends from her past (which were also my friends, in most cases) have abandoned her because of the things she said and did when she was ill. They take it so far, in fact, that they won't even friend me on facebook because they just don't want to be associated with her. So she's in a weird limbo position between sane and 'never-been-in-a-mental-hospital' and those that frequently go.
Also, she weighs 300+ pounds and has recently been diagnosed with diabetes. This scares the bejesus out of me. It has been 6 months since the diagnosis, and she has not lost ANY weight, despite claims that she's trying or that she really is scared of losing her eyesight and/or limbs. This is my biggest concern for her right now. I keep telling her that all I want for Christmas and my birthday is for her to be healthier and be able to keep up with me and my mom next Christmas when they come to NZ. She just is eating badly, not working out, and it shows. Her idea of 'trying' is to ride the stationary bike for 5 minutes and then 'reward' herself with a donut. Grrr. I don't want to nag her but this is really important.
As for me, well, there are many times when I ashamedly get jealous when I see siblings together, acting like she and I used to act, before she got sick. Or when a friend or acquaintance talks about their brother or sister who is doing something awesome, like traveling the world or having a great job and how they are going to take a vacation together, and brag about how great they get along. I AM VERY proud of my sister and her progress and her willingness just to get up and try over and over again in the face of huge odds, but 'staying out of the mental hospital' isn't something that most people brag about or want to hear when you are making casual, get-to-know-you chitchat. That part is awkward, and I HATE hearing the question, "What does your sister do?" because it puts me in a really awkward position. Either I do what I want to do--gently tell the truth--and make them feel awkward and kill the conversation (there is NO way to couch mental illness--believe me, I've tried--and it inevitably ends with changing the subject quickly or them leaving), or I lie or gloss over the truth to make them feel comfortable, which makes me uncomfortable because I usually make her sound like she's a fly-by-night F-up because she doesn't have her degree and doesn't have a normal job that I can talk about and still lives back home close to my parents. I hang out with mostly academic people, so those are the first things they ask about--what degree does your sister have, what job does she have and where does she live? Most of their siblings are PhD's living in the Congo studying bonobos or whatnot. It's difficult for me, but in comparison with her struggles, I know that sounds petty and I feel guilty even complaining about it most of the time, so I don't--well, just on this blog. I've voluntarily told one person in NZ about her, and I've had to tell one of my bosses about my family situation because she was asking about my future plans for my career.
All in all, I'm so, so grateful that she is doing well this Christmas! I'm so proud of her and so incredibly blessed that she is in my life. I've learned so much from her about perseverance and attitude and happiness. I hope it continues and that we have a fantastic time next Christmas when she comes to visit me in NZ!!
Merry Christmas Eve, all!
3 comments:
I'm so sorry. It sounds like she's doing very well and I'm glad!
I hope she can improve her health. I don't really have much experience with mental health and yeah, I would probably not know what to say in a conversation like that. I know i have one or two cousins with down's syndrome, and I remember when I was younger being told not to talk about it (sigh). Honestly, the Chinese and their weird stigma/pride issues.
ee, thanks for that! I'm just glad she is a little bit in control of her life. It's up to her now to make it the way she wants it to be.
the stigma is horrible--you're right, people really just don't know what to say or do because of that. Being told to 'not talk about it' like with your Chinese relatives with Down's Syndrome, is probably the worst thing to do, as it makes it even scarier when confronted with it in a conversation or in your own life. people run away, thinking it is contagious or imagining scenes from all those scary movies.
What I will tell you is the best thing that anyone ever said to me, as a person who loves someone with a mental disorder, was, "That sounds like it is hard for her, but I'd also bet that it is difficult for you." No one before that had ever put me in the equation before. It sort of validated my feeling that I had lost something, too. I'd imagine that that response could apply to a lot of situations.
Just recognizing the fact that it gets hard for everyone involved means a lot. the more supportive that others are of you, the more supportive you can be to the one who is ill, who is dealing with much more than you could ever imagine.
I'm glad she's doing better, but sorry to hear about the diabetes. Unfortunately, there is nothing you can do to make her be healthier, she's got to want it on her own.
As far as telling people about her, my brother is a screw-up... when people ask about my siblings, I state he's going through a "soul-searching" point in his life and change the subject to them and their family... people love to talk about themselves. Try that :-) Its really none of anyone's business.
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