My wife and I were just discussing her desire to visit her sister for a few days. The plan being for her to take a trip without towing her husband along.
       She began to take an inventory of all the tasks she performs for me; helping me first thing and last thing during the day as well as any / all other preparation tasks she performs. Once the list was completed, we began to problem solve ways and alternatives to maintain and meet my needs while she would be out of town. I think that she just does so much for me without really thinking about it that once she saw the fully compiled list, it was a surprise and quite overwhelming [to her]. Oddly, she provides so much care without much thought, but, with great love and a sense of duty [responsibility].
       I was not so surprised. I know each and every task on the list, what we need, the best and most efficient methods. I knew how big a deal it would be to me for her to leave. And, while I was having a panic attack inside, externally, I was going along with the plan. There is no rule that says she has to do any of the tasks on our list. She does it because her heart is as big as the planet, and, she loves me [yep, I am BLESSED].
       Now, because of the complications involved in my care, because of the size of her heart, because of her love for me, she doesn't want to go. I'd be lying if I didn't admit that my first reaction is: Great! No more problems. HOWEVER, I love her too, I don't take her time for granted, I knew the size of the list. It IS overwhelming. However, I know that if anyone should get a break, it is my wife.
     We will continue to hammer it out. She wants to go, but, doesn't want to go. I don't want her go go, but, I want her to go; pushing and pulling / pulling and pushing...

I believe that we are all self conscious. How others see us, how they draw conclusions about the way they think we are; we all care about that, some more than others.

I recall my first 'outing' from the rehab hospital. Five of us patients were herded into the van along with the four support staff. We went to a local restaurant. We were clearly the room's main attraction. Everyone looked and many watched. Some patrons seemed uncomfortable, some had the 'those poor folks' look, some had the 'that's so nice they get out' look, some ate up and left quickly.

I was very uncomfortable. I was learning to use new equipment and still developing methods and control to feed myself.

Since that time, I've learned to be quite adept with the equipment and have a good method of eating. A look at my belly confirms my skill level. I don't think much about how I appear to others anymore. I just focus on the task at hand.

Until I saw the attached picture of me eating my birthday cupcake, I hadn't really thought about my tools and methods for a long time. I have a disability and this is how I do it. Sometimes, you get icing on your nose. I guess my adjustment to disability process has come a long way, too...

        Since I don't drive, I don't really get out of the house very much. Frequently, people seem to feel this is terrible and push to create opportunities to 'help' me. I truly, sincerely appreciate their efforts. However, I don't feel that I am really missing much by getting out except to join others in an outing; sharing a common experience. That is a valid point; sharing / fellowship / comradeship is an important aspect of the human condition. We truly do need each other to share adventures. It is a great method of bonding.
        However, there is the other side to this story. It's the side about bowel and bladder issues. The side about putting other people in a position of caregiver. The side about putting others at risk; requiring them to do things they didn't predict could or would happen. The side about physical pain and struggle. The side that very little of the world is accessible with the kind of deficits specific to me.
        I have been severely disabled for 22 years. I have done the "I'm gonna do this whatever it takes". I have my battle scars. I have my successes and my failures. Rest assured, if it is a priority for me, I'll put a plan together and take the risks. For now, I am very content to enjoy the comfort and safety of home.
        I am grateful to my friends and family who are eager and willing to do whatever it takes to enable me to continue to enjoy  life. That love keeps me going.
        I'm not housebound, I enjoy being at home...

Recently, a friend has been pushing hard with the question, "How are you doing?" Clearly, they are aware that things are not totally 'peachy' and are opening the doors wide to avail themselves to let me spill the beans and let it out. This is  a kindness that is truly wonderful. However, some friends seem to feel that if I don't use this opportunity given me, then, there must be a problem in the friendship. Sorry, sometimes not talking about it; getting away from it; finding a distraction is what I really need. Don't worry, we're still friends!