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Thread: need some help...

  1. #1

    need some help...

    before I begin let me apologize if this is in the wrong section being new here I figured this was the appropriate place for this topic...and please excuse me as I will probably all be over the place with this rant

    ok here's my background: I'm 25 years old a c5-6 complete quad. my accident was 5 years ago and my attitude has always been shit happens move on.


    I consider myself extremely grateful for the network of family and friends I'm surrounded by as they have been so supportive through every phase of my injury. I've been around many others who do not receive the positivity an help that I have received and I make it a point to never to take any of it for granted and thank everybody that helps me even for the smallest of things that I need done to get through the day.

    because I was 20 years old when I had my accident I had to move back into my parents house which of course needed to be renovated to meet my needs which in turn I felt terrible for. this first step was a good start and I felt confident to get work done and get out of there as soon as I could. being that none of us had ever dealt with this type of catastrophe both my parents and I were fielding suggestions on what to do, how to do it, and where to do it. I have always been a people pleaser so if a suggestion was made by anybody I made sure I would do it at pretty much any cost. So within 9 months I was back in school taking four classes, therapy 3 times a week, and my part time job workin 20 hours a week. needless to say I was a little overwhelmed but I didn't want to show weakness to my parents or anybody else around me so I kept it moving.

    close to 2 years I finally snapped, pretty much having a nervous breakdown right in front of my parents and dropped out of school. it was only a few months earlier that my outpatient rehab center had told me that I had "reached a point in my therapy that I would not make any more progress but that I should check back with them I needed any more help." (I came to find out later that budget cuts would not allow 2 therapists to work with me for the hour that I was there.) I continued working part time, going to the gym 3 times a day as well as doing my own exercises at home.

    at the end of my time at school I came across the stem cell surgery in Portugal. it was an intriguing to both me and my parents so they convinced me to see if I qualified. well I did and as much as it scared me they were ecstatic about it. so I decided to go with it what was the worst that could happen?

    so I had the surgery and did the follow up in detroit and it was fantastic. now because I'm not going into details about my results and such regarding the surgery I don't want to be thought of as a miserable ungreatful bum. it just doesn't have to do with this thread. (I'm always willing to answer questions I feel the more knowledge the better)

    now I'm back to my parents house and the pressure to do more is building up again. I'm already back to work still going to the gym still doing my own exercises and in January I will be going back to school.

    my question for everybody is: how do I get out on my own?


    as much as I love my parents I'm about to snap if I hear any more smart remarks about how my younger brothers have already graduated school and how watching sports doesn't count as playin sports. I'm tired of being a 25 yr. old shut-in because I'm so riddled with guilt because my parents have to stay up in order to put me to bed. I'm tired of having to lie to my friends about the real reason I can't go to the bars with them.

    I would love to live in a city so I don't have to rely on somebody driving me everywhere. the problem is section 8 isn't an option. but since I'm with my parents I'm only allowed 50 something hours a week of pca's at $11/hr not to mention I live in the middle of nowhere anybody that would work for that little would burn off in gas money. when discussing this with my caseworker he thought I could live on campus while going to school which wouldn't be bad but I'm back to square one during the summer. then I don't think he took me seriously when I told him just to throw me in a nursing home.


    please let me reiterate...I'm not a "debbie downer" by any stretch of the imagination I just need some help and hopefully somebody know somebody who's gone through this and how to help

    please an thank you

  2. #2
    Many c5-6's live alone, and would really envy you that 50 hours of weekly care. I think my friends that level have 2 hours PCA in the a.m. and 2 in the p.m.

    Considering the fight you've already put up, I firmly believe you can do this. It will be a lot easier if your parents want to help. I'd probably start out near family, somebody you can call if you do a face plant or get stuck in the driveway.

    You need a good, easy-to-access and -operate cell phone. That's your lifeline. You need a good reliable power chair. An accessible abode. Transportation. Reliable PCAs WITH BACKUP. A microwave, a fridge you can get into, I have one friend your injury level that lives on frozen pizza, pre-made sandwiches, and manna from Mom and the church ladies. He does fine, too.

    I'm sure there's more and I'm not saying it's easy. I bet you can do it though!

    P.S. There's always summer school...

  3. #3
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    I'm not surprised that you had a breakdown with the schedule you were trying to keep. Something very similar happened to me. At the time I was working about 55 hours a week, going to school two nights a week till 10:00 PM, and that resulted in about 20 hours of homework too. I was trying to do personal care at two in the morning, and letting some things go that would have been better if I had been able to stay on top of. Reading these posts I sometimes think that I was almost better off knowing that my parents were not going to be any sort of resource for me at all. OK, I have to admit, I still have a lot of emotional conflict over the fact that my parents were essentially "no-shows" in anything remotely parental, but having someone say watching sports isn't the same as playing is negativity and seems a bit cruel to me. You might be able to qualify for subsidized housing (not section 8) which is based on one third of whatever your income is being your rental costs. I think your drive and determination is very admirable, and that you will make it out on your own. In the meantime take good care of yourself, even if that means setting limits with others, or having to live with the fact that you are not meeting their expectations. Hell, they should try doing this, instead of the easy comments........

  4. #4
    Reading your post really hit a cord with me. I was injured 12 years ago, when I was 22. I was always an overachiever, the eldest of two. At the , my parents were extremely concerned and overprotective. Later on, as years and months passed, it became very difficult for all of us to accept that I was not going to be able to do everything we expected.
    I remember even, studying in the Hospital bed after my second spinal stabilization surgery, for the GRE. I took it on a wheelchair, still with severe post-surgery issues. I told my father that I had got into Georgetown for a Masters, he answered: "yes, but you did not get into Harvard". I was again in the Hospital, for the 3rd surgery when we had this conversation.

    From the age of 24 to 30, I drove myself almost to death trying to work, study and manage my SCI, living by myself with no help. I had a physical break-down 3 years ago. I had to stop my job and interrupt the PhD I am doing. I had pressure ulcers, UTI's, etc..you name it. The worst part was that during all those years I always felt I was disappointing everybody in my family and friends if I did not excel in whatever I was doing. I would like to tell you that that attitude almost KILLED me. Literally.

    I dont think my parents were evil, they just did not know better. They were in TOTAL DENIAL. I was too, to a certain degree. It took a complete breakdown of my body and my emotions for all of us to become more real. This last years I have learned to honor my body, and to also acknowledge that my body has been severely hurt. I need more rest. I am not like my friends, or other people in my school. Most importantly, even if in theory I could do something, it does not mean I should do it.

    It may be a good idea to speak with your parents about the pressure you feel coming from them. They may think that pushing you to do more and more stuff is the way to go.. That is very dangerous. For all of you, your physical and emotional health should be the number 1 priority. They could even help you to find a way to live on your own (good idea by the way). Talking to a counsellor may help too.

    You sound like a really intelligent person, and I am sure you will find a way to live an independent and meaningful life.

    big hug

  5. #5
    I appreciate all the feedback...

    I have an appointment next week with my caseworker next week and I'm going to see if I can get into a independent living center. It's a good start until I can finish school and get a job. Does anybody have any experience with these living centers?

  6. #6
    Senior Member NEWPARA's Avatar
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    Quote Originally Posted by McLovin
    I appreciate all the feedback...

    I have an appointment next week with my caseworker next week and I'm going to see if I can get into a independent living center. It's a good start until I can finish school and get a job. Does anybody have any experience with these living centers?
    Ive had little to no help from ILC ,but in your area it may be totaly different.Its depressing looking for a place to live Im ready to snap any day now.Good luck and tell us what happens

  7. #7
    McLovin,

    I know I am a lower injury then you but your story sounds similar to mine. I'm now 25 and was injured at 22, I recently moved out of my family home into an apartment with my significant other. We both lived with my family until the move since he was really the only one who could help me with care, my mom tried but works too much.

    We found a two bedroom apartment, splitting the rent. We got in tocuh with our IDL and stae aid offices, I qualified for food stamps, and Jacob right now is being paid as my PSCP by the state on Nh which helps us. I've stayed away from work due to the fact that I qualify as a disabled dependent that way on my parents BS/BS and medicaid. So, i'm going to school slowly, workng on getting my body better and trying to keep things straight.

    Moving out was the best thing I could have done--even under the crappy circumstances I had to. My step-dad could never deal with the injury--thought it was a stubbed toe and I'd get better. not the case and he constantly reminded of me of how sucessful I was, how i was so athletic, and how pretty i was but how now I was nothing but that. it killed me and moving out has helped me realize slowly my life will come back independently from them. Yeah maybe I need state aid, help from a PSCP to do some daily things, and sometimes I'm going to hit a rough patch but eventually i'll get there.

    Talk to your ILC and to your parents, maybe if you move out and you can find a studio, one bedroom close to home, they'd help supplement your income if your on SSI or from your job that you could afford your own place. I'm sure if they could they'd facilitate getting your independence back. Keep pushing, take the time you need to find an option that words for you. your lucky to have the time to do it. Take advantage look into your states programs and talk to your parents, maybe friends who might be wanting a roomate too..good Luck

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