WE CHANGE FRIENDS CHANGE

[suzzie25]

HI AGAIN,
MY EXPERIENCE WITH MY FRIENDS IS THAT WHILE MY LIFE CHANGED MY FRIENDS CHANGED...I CAN RELATE BETTER TO PEOPLE WHO HAVE HARDER REALITIES AND MORE STRUGGLES THAN BEFORE MY SCT. SO I FIND IT HARD TO STAY CLOSE TO MY OLD FRIENDS AND WHEN I DO TALK TO THEM I ALWAYS SAY YEAH WE GOTTA GET TOGETHER BUT THE FACT IS THAT WE DONT EVER DO IT...AND IN ONE WAY ITS SAD BUT ON THE OTHER HAND ITS SO DIFFICULT TO DO THE EASY THINGS THAT I USED TO DO AND ALSO THEIR PROBLEMS SEEM SO SMALL COMPARED TO MINE. I FEEL LIKE I HAVE TRIED TO EXPRESS HOW I FEEL NOW BUT I DONT THINK THEY GET IT..AND ONE FRIEND COMPLAINED THAT SHE DOESNT SEE ME ENOUGH..MAY BE I NEED BETTER WORDS TO EXPLAIN..CAN ANY ONE HELP WITH THIS...THANKS SUZZIE

[paul55]

I think sometimes the way you are explaining it is generally the way it is with a lot of people. It is difficult for a perfectly healthy individual to know and understand how folks like us or anyone with a major medical problem for that matter may feel and how difficult it is to get by. You and I can relate due to our issues and even maybe empathise easier , we are actually feeling the physical pain. Even at that, we don't actually know what it would be like to be worse off than we actually are. We also can only imagine. Having used a walker for a short period and living with one for the rest of my life is very difficult to understand. And I'm maybe not that far from it someday. I can understand why the healthy individuals with no issues like us can't understand.

Maybe your friend needs more time with you to better understand what you are going thru. Some people should come to understand your lack of abilities to do certain things. Over time, they should physically see this, which should help them to understand better, but they will never fully understand the actual pain you feel. They will have to accept what they see and hopefully accept you as you are. These are your real friends!

Paul

[suzzie25]

THANK YOU SO MUCH PAUL...YOU MADE MY DAY ..SUZZIE

[8338]

Suzzie,
My friends have been pretty good by standing by me. We either get together for an occasional dinner, or lunch. They even took me to an event where they had to push me in my wheelchair and almost dumped me, ha,ha. On black Friday I go shopping and have to be pushed through the mall.
I try to go to anything that they ask me to go to-if I think that I can physicially handle it. WINTER IS ANOTHER SUBJECT!!!
But on the other hand, I feel that they are going to a lot of things without asking me or going shopping without asking me because it would be more work to lug me around.
At the present time, I am down because my son is getting married next year and I feel that my future daughter-in-law is going to wedding shows and not asking me. It's just a lot easier for her and her mom to take off and go. THIS HAS REALLY BEEN MAKING ME DOWN LATELY-I hope she doesn't forget to invite me to the wedding:-( (My son is out of town and I can't shaire with him)

**My friend is going away with her weight watchers support group next week and I'm jealous because I can't get together with my support group***- You all live so far away :-(
Barb

[suzzie25]

HI BARB,
THANKS FOR YOU REPLY. WOW THAT MUST BE HARD NOT BEING ABLE TO BE AS INVOLVED AS YOU WANT TO BE AND YES I WISH OUR SUPPORT GROUP WAS CLOSE ENOUGH TO MEET TOO. OH AND YES WINTER IS A WHOLE OTHER SUBJECT!! I CAN RELATE TO THAT. I WANT TO MAKE MORE FRIENDS THAT I HAVE MORE IN COMMON WITH BECAUSE I THINK IT MAKES US FEEL BETTER WHEN SOMEONE ELSE UNDERSTANDS. SUZZIE

[peilynne]

Hi Suzzie,
It is very disappointing and it hurts when our friends just kind of abandon us. I have only seen two of my best friends once since I returned home in Feb. I'm not quite sure why. I have a beautiful deck and we sat out and had coffee and laughed. My other two best friends are great, I see them alot and they treat me just the same. Some people just can't handle sickness or disability at all. You could try and be the initiator, invite everyone over to your house on a specific date. Ask everyone to bring something to eat so its not too much on you, a potluck. All u can do is try. My "good" friends said maybe people don't come around because they might think you need your sleep, or are having a bad day and they don't want to bother you. So, if that's the case, you might need to be the initiator.
Otherwise, be friendly and open to making new friends. I've made many very good friends since this all happened. You just made one, I'll be your friend.

[msweeney]

Suzzie,

I was touched by your reaching out for help on this issue. It is a really tough one and one that shows that we heal in two ways, physically and emotionally. It is hard to become a member of a misunderstood minority. It is also a temptation to forgo the world at large that doesn't understand our struggles. But in the long run I think that is a mistake and can prevent us from fully healing the emotional damage that occurs with these tumors and their treatment.

One morning about a year out from surgery, I had arranged to have coffee with two good friends. We all agreed to meet at a coffee house @ 7:30 am to catch up on each others' lives. Unbeknownst to me they had decided to meet at 5:45 am to take a bike ride before hand. For the first few minutes they shared details of the bike ride. I had always been an avid bike rider before my surgery. It was very bitter/sweet. On the one hand I was glad that they felt comfortable to share their experience. On the other hand it pains me deeply when not being able to do the things I loved so much and these reminders definitely refreshed that pain. I would have loved to have been a part of that bike ride, sharing a good cardio in the coolness of an early, Seattle, sunny, summer morning. I also would have relished leaving these two guys struggling just to draft in my tailwind.

These two friends are very good and kind people. One of the two in particular has a deep love of biking that I fully shared. When I saw him or listened to his planning for a bike trip in Spain, it hurt so bad I wanted to cry. He did this because he knew how much I loved biking and he wanted to include me in his adventure. He is such a good friend, I didn't want to tell him that it pained me to think of things I could not do. And frankly I was embarrassed by my jealousy. So I kept listening and pushing through my discomfort. I think sometimes that is what it takes. When he e-mailed me photos of his bike trip, I could feel my heart soften and I was so excited for him and his grand adventure. I realized the closest I would ever come to having that sort of adventure again was by living it vicariously with him. I do believe that was his purpose in sharing it with me.

I am better able now, three years post surgery at letting go of the things that my disability precludes me from doing. I always hope that people will continue to share with me the things in their lives that bring them joy and not keep them from me in a protective gesture. I also hope that people will continue to include me in things that may be questionable given my disability and I can let them know how best I am comfortable in these situations.

I can really appreciate the sadness and frustration you felt, Suzzie, because it has been very tangible for me. I think so much of that pain comes from the inability to do things rather then from other people's insensitivity. I try not to hold them accountable for this pain as often they are just the reminder and not the cause. I also know that before my surgery I was probably as insensitive or more so about these matters. I think my own insensitivity makes it easier for me to understand. I would guess that if you were a considerate and thoughtful person before your surgery that may be more of a challenge.

Rather than wait for others to come around to your desired behaviors, I have tried to take a more proactive role in promoting the behaviors that I desire. I miss the camaraderie of runs, bike rides, skiing, hikes and climbs and kayak paddles. Especially, I miss the ability to walk with people at a normal pace. So when someone takes time to slow down and walk with me, I make a point of sincerely thanking them for spending the time to walk with me. I let them know how much I miss it and how much I have enjoyed the gift that they have given me.

I hope none of us ever feels bad about the pain that our disability causes, whether physical or emotional. No of us deserved it and often there are not easy remedies. It hurts because it hurts. What I love about this forum is that I can come here and have a sympathetic ear and also have lots of support and concrete suggestions about how to deal with the very real hardships that our disabilities have brought into our lives. So thank you all for that!

Matt

[suzzie25]

HI MATT,
THANKS FOR YOUR REPLY..I USED TO SKI AND WHEN I SOLD MY SKIES I CRIED ..BUT I HAD TO SAY TO MY SELF AT LEAST I GOT A CHANCE TO DO IT AND LOVED IT...AND THIS IS THE SECOND HALF OF MY LIFE AND TIME TO MAKE THE BEST OF IT AND MAYBE GIVE BACK TO SOMEONE ELSE ...SUZZIE

[msweeney]

Suzzie:

You are farther along than I. I have yet to sell my skis as I have not completely ruled out adaptive skiing. I did get rid of my racing bike and have given away my cross country skis. Yes, olden memories are good and sweet and we will always have those!

Matt