Solitude - Is it required or a reality of disability

[icnmgrjill]

I was watching a TV show last night on HBO about teenagers who had been in car accidents and had received brain trauma. In all cases, the kids had either been drinking or had chosen to drive with someone who had been drinking. It was so sad to see such young lives forever changed. Each of the kids had major head injury that left them with poor short term memories, anger problems and, most surprisingly, almost total isolation. Friends who had once been a regular part of their lives had disappeared. These teens lived very lonely, isolated lives.

And this morning, at the grocery store, a man my age in a wheelchair accidentally bumped into this grumpy little old lady in the checkstand who proceeded to yell at him. It wasn't his fault... the teller had laid something in his lap which hit the controls for the wheelchair. Totally paralyzed, all he could do was softly whisper an apology which, of course, she couldn't hear. Both the teller and the bag girl defended him and said that it was their fault. It left me speechless about her insensitivity. At that moment, it also made realize just how isolated and "apart" he must feel too. There's God, once again, teaching me perspective.

It's something that has always bothered me about my life. Once I became ill, I've definitely been more solitary. In part, it's because I was embarassed about having a bladder problem. I didn't want to let my friends down, so I stopped doing things with them. There was even a time when I refused to do things with my family... because, in my heart, I didn't think that I deserved it. My self esteem had shrunk to the size of ant... one that had been thoroughly smashed on the side walk.

You know... some of it was the result of how people treated me. I can still remember those well meaning "friends" at work who trivialized my struggles or who laughed at me. My own boss said that I came from "weak stock." Others assumed that I was contagious. I have to admit that I was utterly devastated by that constant undermining.

But, I also realize that I'm very good at a self imposed isolation as well. Yes, I like my moments of solitude with a book and a cat in my lap. But, I don't like feeling lonely... and I do feel lonely frequently. I don't have as many friends as I used to. I don't do some of the things that I used to do.... like play tennis every weekend. When my IC was bad... it was just a logical choice. But now that my IC is good, it grates at me. I want more of a social life. Arrghhh!!

I and, I think many of you, share something similar with almost everyone who has struggled with a serious medical condition. We are often isolated and it makes me wonder about the many men and women who are single and struggling with a medical condition... We want to be in relationships but it's hard. I often say that the perfect for me is a man with IC or a prostate problem. It would be something that we both understand... no explanations needed.

So... maybe... just maybe... we need a friendship service... or a dating service for people who have medical conditions... who do feel isolated... and who want to meet others. What do you think???

[dancemomof2]

I agree, solitude is the hardest part of my disease. Not being able to explain the exact misery i have in my life. Those who you explain it to as a bad bladder infection, you get a look like well those go away.

I was fortunate enough to not have any sever IC problems or diagnosied until after i met someone and was able to marry and take a bigger step in my life. I can't imagine trying to explain myself to a new man in my life.

[SharonA]

Jill...

Yes, a friendship service would be a wonderful addition to the ICN. I don't know if it is real possibility since we live in so many different areas in the world. But, just knowing that everyone on this site is out there willing to help and be friends is a great comfort.

One of the best things that has happened for me is to make friends with someone who has IC and be able to have an occasional lunch or dinner with her and NOT have to explain why I take pills before and sometimes during the meal. It is so wonderful NOT to have to explain why I may have to excuse myself to go to the ladies room during a meal. It is so wonderful knowing that she understands why I am so particular about how my food is prepared and what the ingredients are in the food before I order it.

Thank you, my friend... :) And thank you to everyone who spends time on these boards. You provide a great service to everyone who comes here for understanding and comfort.

And a huge THANK YOU to Jill for providing this outlet. :kissing:

No one is alone in the disease, we all have each other. :)

[Sarojini]

Jill -- I think it's a good idea but know that it may be difficult to do logistically, as Sharon has said, as we are all over the world. However, perhaps it could have different sections for different areas of the country or something?

I know the ICN in its current form has been a God-send to me since before and after diagnosis with IC. It was and still is a place I can turn to for comfort, or if I have a question. Here, everyone understands!

I have also met a lunch/dinner buddy on the site and find that it's a great help. My lunch buddy even reminds/tells me if there is an ingredient I cannot have in something at a restaurant I've never been to, but that she's eaten at before -- and that is great because then I can order it without and avoid a huge flare! ;)

Since I have been home this past year, it has been very isolating, but my lunch buddy and ALL of my ICN buddies have curbed my loneliness and isolation. :) Thank you.

I lost all touch with all of my former acquaintances at my previous job, and I think a lot of it is they didn't want to hang out with someone "sick" or that they thought it was contagious. Some of it, too, was probably my fault, as in the beginning I did not have my disease under control and I was in great pain, and I would refuse to do things because I couldn't stay away from the bathroom, or because I could hardly walk from the pain.

My husband understands, but there is only so much he can do -- he doesn't know what bladder pain is really like, and neither do many of the friends I am still in touch with -- EXCEPT for my best college buddy, who deals with lupus and fibromyalgia. However, she's far away, in New Jersey, and she is, despite her limitations, becoming a great violist and composer!

Just wanted to thank everyone :)

[icnmgrjill]

This kind of says it all

A farmer had some puppies he needed to sell. He painted a sign advertising the 4 pups. And set about nailing it to a post on the edge of his yard. As he was driving the last nail into the post, he felt a tug on his overalls. He looked down into the eyes of a little boy.

"Mister," he said, "I want to buy one of your puppies."

"Well," said the farmer, as he rubbed the sweat of the back off his neck, "These puppies come from fine parents and cost a good deal of money."

The boy dropped his head for a moment. Then reaching deep into his pocket, he pulled out a handful of change and held it up to the farmer. "I've got thirty-nine cents. Is that enough to take a look?"

"Sure," said the farmer And with that he let out a whistle. "Here, Dolly!" he called.

Out from the doghouse and down the ramp ran Dolly followed by four little balls of fur. The little boy pressed his face against the chain link fence. His eyes danced with delight. As the dogs made their way to the fence, the little boy noticed something else stirring inside the doghouse. Slowly another little ball appeared, this one noticably smaller. Then in a somewhat awkward manner, the little pup began hobbling toward the others, doing its best to catch up....

"I want that one," the little boy said, pointing to the runt.

The farmer knelt down at the boy's side and said, "Son, you don't want that puppy. He will never be able to run and play with you like these other dogs would."

With that the little boy stepped back from the fence, reached down, and began rolling up one leg of his trousers. In doing so he revealed a steel brace running down both sides of his leg attaching itself to a specially made shoe.

Looking back up at the farmer, he said, "You see sir, I don't run too well myself, and he will need someone who understands."

With tears in his eyes, the farmer reached down and picked up the little pup. Holding it carefully he handed it to the little boy.

"How much?" asked the little boy.

"No charge," answered the farmer, "There's no charge for love."

The world is full of people who need someone who understands.

It's National Friendship Week.

Show your friends how much you care.

Send this to everyone you consider a FRIEND.

If it comes back to you, then you'll know you have a circle of friends.

[Sarojini]

This was so cute it brought tears to my eyes. Thank you for sharing :)

[ICAmy]

Such a sweet story! I had tears in my eyes reading it.
Amy

[yvette]

Hmmm interesting question, and depending what stage we're at....being alone can really be necessary. I think everyone of us have gone to the extreme of "why doesn't anyone listen to me, read what I print out, why doens't everyone put IC upfront like I do?" And by extreme, I'm talking to the point where you're angry, and you take things to personally....for me it was almost like I wanted the world to just see my point of view..ALL THE TIME. I couldn't think of anything else other than my IC and how it was affecting me moment by moment, day by day.

Being isolated gave me the time to figure out how to get COPING SKILLS....if you don't get those...well, you're going to be lost.....It took me a LOOOOOONG time to get mine. Being alone let me figure I what I wanted, what i needed and what was realistic.

I know I have heard (and others too) "Well others have disabilities and they go on to live full, happy lives" and yeah, well my disability has a few snags that make it unique....<sigh>

Ok I guess what I am trying to say is: Being solitary is sometimes part of the deal...you can't pretend to keep up when you really can't. And if you can keep up part of the time....I found it takes MUCH more work than a fully healthy person. What I eat that day or even the nite before affects my schedule.

Sometimes being solitary is self-imposed....and we don't realize until its done....

omg...have I made any sense at all? LOL :loco:

[icnmgrjill]

LOL Yvette! Yes, you did... :)

[creatingkarma]

I just have to comment on your story of the old man in the wheelchair. I witnessed the same exact scenerio a few weeks ago in my grocery store & could not believe how rude the woman in front of him was. I felt so bad for the man in the wheelchair & so angry at the woman who belittled him. I told God that if that if I could find that man in the parking lot after I got checked out that I would say something to him to help brighten his grocery store adventure. Well, as soon as I walked out the door, there he was sitting all alone. I told him that I was sorry for how rude that woman was & gave him a big hug. He told me that I made his day & it felt soo good to hear that. We talked for about 15 minutes & not only did I bless him, but he blessed me as well.

Now about solitude. I think it can be good for your soul. Whether you have an illness or not, we all need a little time alone to relax & think over things. But like anything else, too much can be devastating. I go through periods where I want to be alone, but I know that I can't keep it up for very long or I will sink into depression.

I think a friendship service is a good idea, but like everyone else, I wonder how it could be with all of us living so far apart. I have often thought that it would be wonderful to meet my IC friends face to face. How about an IC weekend convention?

[tigger_gal]

Your post hit home over here.... being "victim" of a husband involved in a drunk driving accident.. I am indirectly involved and live life daily with the pain he suffers for what he had done... there was no one injured thank god but there were 8 hit cars and 3 of them totaled.. that dosen't count my truck that was totaled out.. He hit his head on the windshield and was knocked out cold thats how the others were totaled out, he not offered medical attention because he was at fault... My point Is do not choose to drink and drive.. IT can be costly.. this has had a grand total of over 35 thousand dollars.. I have no remorse for what he did... I feel guilty for what he did because it was my truck, and I should have been awake when he came home on a bicicyle and took my truck...
not a month later on the same street my daughters friend Shane was in a car hit by a man that was drunk and high on pot.. Shane layed in a coma with severe brain damage for 10 days before they took him off life support and died.. This too affected our family to great extent...
Did you know if your out and are drunk.. you call the local police department and tell them you need a ride.. they will pick you up and take you home.. too bad people don't use this method of transportation...

I found it difficult being disabled and home alone.. no one to talk to and all my friends dumped me...Alos not wanting to go placesand do things with my family.. I felt so alone and singled out.. thats when fell sorry for me and anger sets in.. Now its just a way of life.. I am 10 to 14 hours a day all alone.. I do have to admit tho, I have made several great friends thru the ICN and one I talk to daily, I would never be able to get thru the days with out her great friendship....

The other day, I was at the corner store and I ran into an old friend.. He has ms.. and the right side of his body dosen't work well any more.. He brought in bottles for a gallon of milk for his 4 children.. (he washes windows, for the last 20 years for income) he didn't have enough money... and the guy at the counter was ridiculing him and making fun of him especially the way he talks, he was actually talking to him like my old friend talked, very slowly, studdering. It hurt me, and I was furious that a store clerk would do such a thing.. I went to the store for milk myself... I had 10 bucks left for the week and it was sunday... I gave my friend all my change from the ten.. he went back and got bread and bologna.... I went to my car and waited for him to leave... I went back into the store I have gone to the last 15 years and let the store clerk have it... I have vowed not to do business with such low lifes, I'd rather drive a mile then go 2 blocks to that store again.....

Brat

[Dusty]

I like your idea Jill and think it can be done...I believe that.
Being disabled and facing so many things in life myself, I run into obstacles all the time. It does get to where you won't go out and so on. When I first was told I had to use a cane. I did not want to go out and rarely will as I try to adjust to this. Then told to use a wheel chair for distance walking..I really do not want to go out. My dearest friend that was a friend of my late husband and me..is in a wheel chair forever and on oxygen forever. We have gone places together often with him and wife, and their grand daughter they are raising. I often see the looks he gets and so on..and the rudeness of those around him. It hurts him many times..but he goes on anyway. One day they were in a restaurant and he couldn't park in handicap parking due to someone had parked there that was not. Their lovely little grand daughter got up and went to two police officers sitting there having dinner also. She said to them, "My grandfather is in a wheelchair for life. We could not park in the handicap parking spot to make it easier for my grandfather because someone is there that is not handicapped. So it made it much harder for us to unload his wheelchair and get him into the restaurant to eat." The officers were very impressed with Audriana and went to the vehicle parked there. The man inside was then talked to about doing what he did. Before they could even issue the ticket he said to the officers he was sorry and he would be willing to pay whatever the fine was and he did. He also moved his car and then went and apologized to Audi and family. I called her on the phone and told her how proud I was she stood up for what is right. I run into it all the time now that I too have handicap parking privlages. People look at me like I am nuts. I don't use the wheelchair as yet, but will use the cane..if I don't have the cane they look at me like I have no business in that parking.
However they do not know the pain I live in or how hard it is for me to walk and for me to walk distances. I look normal. So does my other friend in a wheelchair. We look normal therefore people don't understand. We say we would be better off missing a body limp or something and then people would not give us such a bad time..but because we look normal people automatically assume we have nothing wrong with us. This I run into all the time so I often find it is easier to just stay home and yes I too dropped off doing with people. I cath with my IC and run into things with that all the time in public restrooms..I am looked at like I am contagious when I wash my cath out..if I don't wash it however properly I can't use it again till I do and maybe I am not going back home yet. I miss my hubby on the basis of our love but also because we understood what the others call not normal..we were normal as far as we are concerned. When his face on one side paralized due to his cancer. He did not want to go in public. I said to him, "If people stare at you and so on..that is their problem, as they are the ones with the shallow minds and thinkiing." He would go in public after that. His heart was good, how he treated people was great and so on. So I felt it was the publics problem not his.
I think this service would be great as being with someone that had illness I can say it helps, as you know together.
Good idea Jill,
Thanks,
Dusty

[ScottR]

I think many people react negatively to people with health problems especially the ones that are visually apparent (man in the wheelchair) from their own subconscious fear of becoming sick or dissabled themselves.

[Babs RN]

Jill,
Solitude is not required--at least not in my life. If there is one thing the IC has taught me, it is that I am alot stronger than I ever gave myself credit for. I choose to interact with my friends, and while I am the only one with a chronic illness, interacting with those who don't suffer daily is a great place to teach. Chris being gone and fighting this illness with Lindsey at home with me initially left me with the fear that I would wind up isolated, that my friends wouldn't care or would grow tired of my inability to do things most Moms of preschoolers do. I could easily hang out in my house only leaving to take Lindsey to school. I don't and I have some of the greatest friends in the world who help out in more ways than I can ever repay. Here's a snipet of a recent experience that showed me solitude and focusing on my illness alone just shouldn't happen. I had a friend ask Lindsey and I to go to Chuckie Cheese and Target for the afternoon. She knows the driving kills me and told me she was driving immediately. We got to Chuckie Cheese and she ordered pizza for herself and our 2 girls and then ordered a "naked" one for me because she knows I can't eat the sauce. Never even had to ask. Never questioned when I had to take pain meds and then when I felt like I couldn't tolerate Target said we'll come back later. No frustration, just concern. It is wonderful to be surrounded by love and that is why I am able to not live in solitude. I know I am lucky. Lucky that IC is there everyday, but love and true friendship are what I remember as the day concludes. I hope this makes sense--just my thoughts.

Barb

[melanie626]

Solitude can be both a curse and a blessing...I like the idea of a friendship circle, maybe more visitors would sign up too. I am lucky, I am single but met a great man...he is a type 1 diabetic and at first I was wondering about his illness and I quickly came to terms with that and now he has had to deal with mine in recent months. I am lucky-
Melanie

[veeneck]

I am a new member here, and glad to see that there are others who have the same problems that I do. I am in a bad situation regarding relationships, I have been struggling with IC for about a year now, and I don't feel like I can date--mostly because sex hurts, and because of the embarassment of wearing adult diapers everywhere I go. I can't imagine myself, in my current state, being with a new partner, but at the same time, I would like to have one....I am hoping that someday I will find a way to manage this disease so that I can have at least a semi-normal life. Right now, it is just getting progressively worse, and nothing helps that much.

Best wishes to all,

Victoria