I guess my history/background has had so much medical adversity, that I can see things from many different perspectives. I have come to the conclusion that people in general do not do well when it comes to illness. Even things like cancer, although we know a lot more about it, after a person is ill for any length of time, the help & interest in that person seems to wane.
When I was just 27 I gave birth to my 3rd child, a boy with spina bifida. Although he was full-term & healthy (and also the most beautiful baby I had ever seen), I did not get the cards or baby clothes that I got with my daughter & first son. Instead I got more like Thinking of You type cards. I’m not saying it was easy raising him, but I was always proud of all of his accomplishments. All was great socially until junior high when I guess it was just too much trouble to invite someone with crutches & braces out with the gang. After college, he accepted a job in sports journalism, which he has done for 4 years. He still has really no social life; I guess young people are afraid of wheelchairs.
When I first got sick over 5 years ago now, I had over 12 bouquets of flowers in my hospital room. Initially people at work signed up to cook meals, donations were made at our old church for food take-out, ect. But the longer I was ill, the less we heard from people. I was hurt for quite awhile, but now realize that maybe I would not have acted all that differently than they did. After all, no one wants to get involved in a committment that might last for years. But I was lucky in one respect, I had a wonderful husband who took care of me through 2 1/2 years of almost total paralysis, as well as the support & care of my 3 children.
They do “get it”, they remember when mom had too much energy & never knew when to quit. Now when I say I am tired, they believe me, no questions asked. I do really feel for those out there whose children are too young to remember their parents at 100%. I also really feel for anyone who has to face these illnesses without a significant other, or one who does not try to understand. As for my brother & sister, they don’t get it, & still treat me like my old self. It is up to me to just say no, that I am too tired.
My husband has been through 3 surgeries in the past 1 1/2 years, two painful & serious back surgeries, & is now in the position of recovering from apendicitus, where the appendix had ruptured & many of his organs were paralyzed temporarily. He will have a 6 week recovery. His numerous relatives called me constantly during the 9 days that he was in the hospital, even though I tried to tell them to talk to each other, or how tired I was from being at the hospital all day. He got home on Monday, & strangely the calls have stopped. I hate to say it, but I think a lot of the calls are actually what I called “morbid curiousity”, & now that he is better, he is old news. The only get well cards he got were from his own children.
I am glad that I have been well enough (just barely) to take care of him during these surgeries. Our children have been there for us & a few of my close friends, but I have learned that each family has their own issues & that my husband & I can only count on each other, & our children. Trying to educate someone’s siblings is impossible, unless one has been seriously ill themselves. I wish I didn’t feel this way, & believe me I am a happy person & not bitter. I just believe that this is the reality of being seriously ill.
As for support groups for the patients, I believe that those are great. I hope to make the one in MN in May & see Dr. Parry again, as he is my neuro. How wonderful it would be to meet people who have actually experienced what we have gone through, but also feel the way we do on a daily basis. That is why we have this active forum, because so much of the time the people here really do “get it”, when others just possible cannot.