Page 3 of 9 FirstFirst 123456789 LastLast
Results 21 to 30 of 82

Thread: Social Isolation

  1. #21
    Last Saturday I was invited to a neighbor's house for a potluck to welcome some new neighbors. The woman hosting the party called me and said that her husband and this other neighbor would be happy to carry me up the stairs. I didn't want to go, because I didn't want to be carried up the stairs, but I also didn't want to NOT go. So I went, and I was carried up the stairs. Note: A portable ramp would not have worked because there were too many stairs. Almost all the houses in this neighborhood have at least 5 steps to get to the porch.

    Once I was inside, I felt isolated. It was so crowded that there was no way for me to mingle. I literally sat just inside the front door the entire time. People came to talk to me of course, but that's not the same. My daughter went and got a plate of food for me. I didn't even ask her to do it for me. She just knew that I wouldn't be able to get to the food table.

    And then there is the issue of speaking to a standing adult eye to eye.

    And Medicare says the iBOT is a "luxury".

    BTW, I do have an iBOT. Before I got the iBOT, I was so excited for it's stair climbing function. Turns out climbing stairs in it is too scary. (I totally love the Balance and 4-Wheel Drive functions though.)

    So anyway... there is no way my neighbors are not going to spend thousands of dollars to make their homes wheelchair accessible. There are only two real solutions to this problem. 1) A cure for SCI, or 2) Better wheelchairs.

  2. #22
    Senior Member zillazangel's Avatar
    Join Date
    May 2004
    Location
    North Carolina, USA
    Posts
    3,399
    Fiesty, I don't mean to disagree with you, but I have to say that it really really is different in a manual chair. And the things you mentioned just doing - all take money (of which we have none at the moment). And there are 5 ways of hanging around that don't involve going to their house ... I kinda wrote them out. But you are right, there are certainly ways around it, and things to do that are free, I guess I'm just moaning in a way (not meant sarcastically) - I wanna be like everybody else sometimes. You know? Just be able to say sure! let's hang out at your place tomorrow.

    I actually wrote this post originally in another setting, and it was aimed at AB folks, to raise awareness of why its hard for us. Are there ways around it? Sure, but they are not always good, easy, CHEAP (or free) and let me tell you - putting in work to socialize sometimes makes it not worth it. And please remember that I am coming from a position where my husband is totally paralyzed, he can only shoulder shrug and turn his head. So our obstacles are significantly bigger than the usual.

    But to everyone, and many of you see it, my main point really is that we're not like other people. We can't be spontaneous and meet up Bob's place tomorrow. Its harder for us - thats all I'm trying to say.

    ETA: Shannon, I really really understand what you said! I'm really glad you understand my point too - I wish chad could have an ibot (or everyone in a power chair actually!)

  3. #23
    Senior Member
    Join Date
    Aug 2007
    Location
    last house on the left
    Posts
    9,791
    I feel like the only times I can avoid the expense of a restaurant meeting or the cleaning AND expense of having someone to my place is during the summertime, when picnics work very well. Yesterday it was -2F here, so picnics are a long time off, and I also miss the spontaneity of just running into someone else's home. I have friends I have known for 30 plus years, and have no clue what the inside of their houses look like beyond an occasional peek at a photo they have taken of an event there that I could not attend.

  4. #24
    Here's another example of feeling isolated.

    Last week I was invited to the symphony. I was invited by this guy who has a friend who works for the symphony. His friend told him that the seats she got for us were "excellent".

    The building it was located in was a beautiful old building downtown. Our "excellent" seats were in the balcony. There was a elevator. So we get to the 2nd floor and we ask the usher to show us to our seats. Our "seats" were not even seats. They stuck us in this little cut out area on the side that lead to a door for the janitor's closet or something. We were totally isolated. My date had to sit in a portable metal chair. It was bad. This was the 2nd date I had with this guy. Nice, huh? I had a 3rd date with this guy later in the week and we had a long conversation about accessibility issues. He brought up the subject so obviously it was something that bothered him.

    Between that and the potluck at the neighbor's house on Saturday, I couldn't get thoughts of just never leaving the house again out of my head. Then today I get the email inviting me to a meeting at a friend's inaccessible home. IT'S SO FRUSTRATING!!!

  5. #25
    Senior Member feisty's Avatar
    Join Date
    Jun 2005
    Location
    Midtown, Sacramento, CA
    Posts
    2,744
    Quote Originally Posted by zillazangel View Post
    Fiesty, I don't mean to disagree with you, but I have to say that it really really is different in a manual chair. And the things you mentioned just doing - all take money (of which we have none at the moment). And there are 5 ways of hanging around that don't involve going to their house ... I kinda wrote them out. But you are right, there are certainly ways around it, and things to do that are free, I guess I'm just moaning in a way (not meant sarcastically) - I wanna be like everybody else sometimes. You know? Just be able to say sure! let's hang out at your place tomorrow.

    I actually wrote this post originally in another setting, and it was aimed at AB folks, to raise awareness of why its hard for us. Are there ways around it? Sure, but they are not always good, easy, CHEAP (or free) and let me tell you - putting in work to socialize sometimes makes it not worth it. And please remember that I am coming from a position where my husband is totally paralyzed, he can only shoulder shrug and turn his head. So our obstacles are significantly bigger than the usual.

    But to everyone, and many of you see it, my main point really is that we're not like other people. We can't be spontaneous and meet up Bob's place tomorrow. Its harder for us - thats all I'm trying to say.
    No, I do get your point, and I'm sure that we can all relate, and I've been almost that paralyzed (C5-6-7 incomplete) so I know where you're coming from. I used the power chair as my chair for the first portion of my injury, but I didn't have a van, or a spouse- so I know how EXTREMELY limiting it CAN be... I just know that injuries control so many of your daily functions, I don't want you to think that you can't still be social. Many people isolate for various reasons or whatever, but I guess I'm just clumsily trying to say control it instead of letting it control you... you know?






    p.s. when you ARE ready to get out, usually you can google search 'Free' and the name of your town and/or county to find out what's up in your area for chear- especially now that it's going to be summer.
    An administrator made me remove my signature.

  6. #26
    After my daughter is on her own, I'm getting an apt or condo in a high rise in downtown. That way all of my neighbor's homes will be accessible.

    The date I had last week... he lives in a condo downtown... it was SO nice to be able to get to his place without any help. In fact, I think it was the only time I ever dated someone who lived in a place accessible (other than Cspine!)

    The last guy I dated dropped me when getting me down his front steps.

  7. #27
    Dave in his chair weighed 650 when he left rehab. It is several steps into my mother or sister's house and once in there is not a lot of room. (His mother's house is 150 miles away and 5 steps un into a small rambler.)
    His brother has a large one level house in our town which would be easy to have a semi portable ramp (roll a ramp) but he has been trying to sell it the last couple of years.
    We have been having family things at our home because our set up is perfect for Dave. Usually my family brings most of the food and we share cost.
    Next month his Mom turns 70 and we are having everyone from out of town come here. We got a party room in a restaurant and the family can stay with his brother.
    BUT-there will be about 20 people and I wish BIL would have us all over to his much larger place also.
    I suggested renting a ramp, but with all of the snow piled around I don't think it will work. Plus he was just not very receptive.
    When his brother with 4 small kids were visiting we twice took them to Chuckie ($$$)Cheese and another time made a picnic and went to a park.
    Winter is what is making us feel extra isolated. In the summer we can get quite a few people included in the attached garage or at least sit on the patio.
    Dave had been stuck inside 3 weeks yesterday and we ventured out to a small near by mall for a burger and a beer.
    He used to ice fish which is out of the question now. My sister is remodeling her kitchen and he would have been in the middle of that, but she sends pictures.
    We went to his nieces graduation in Mpls and mainly stayed in the garage because their house is a split. They felt bad, but was not much they could do with their set up.
    He has said he would not mind being carried, but he is just too big.
    Sigh. Just my mindless rambling. This winter isolation is getting to us.
    His toes are taking so long to heal and it has been so bitter cold and icy.

  8. #28
    Senior Member Kris's Avatar
    Join Date
    Apr 2007
    Location
    Ontario, Canada
    Posts
    203
    Does it bother you when a close friend or family member buys a new home with no thought to how accessible the house is?
    For myself I visit with friends that have the most accessible houses.

  9. #29
    Senior Member
    Join Date
    Aug 2007
    Location
    last house on the left
    Posts
    9,791
    Quote Originally Posted by Kris View Post
    Does it bother you when a close friend or family member buys a new home with no thought to how accessible the house is?
    For myself I visit with friends that have the most accessible houses.
    It depends on how good a friend it is. I don't expect anyone to make their bathroom usable by me, nor do I need to access more than the living room, although the kitchen would be nice because then I could help out a bit, but when I have at least two friends whose houses have about four stairs to get in I do wonder why they haven't thought about even a temporary ramp to get me in occasionally.

  10. #30
    We met a nice middle aged couple at the clinic last summer. She had MS, in a power chair and also a trachea. She was having trouble with speaking valve and Dave had some hints.
    We had a lot in common, wanted to compare notes about docs, chair repairs etc and we invited them over to visit.
    Sadly she passed away shortly after of pneumonia.

Similar Threads

  1. Replies: 16
    Last Post: 07-14-2009, 02:00 PM
  2. Coping with Loneliness and Isolation
    By orangejello in forum Life
    Replies: 41
    Last Post: 05-17-2009, 07:05 PM
  3. Replies: 13
    Last Post: 07-07-2006, 08:28 AM
  4. Replies: 1
    Last Post: 09-06-2004, 08:15 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •