Have you hugged a disabled person today?

Maybe I complain alot but the reality is I don't always feel good or right. I would be so grateful to go back to living a normal life without lymphedema - a life without feet, legs and a body that are way too swollen and misshapen. One where I don't have to be in constant pain, or worry about falling down or urinating myself or having help just to get bathed and dressed each day.

When you walk through life  basically healthy, I think some things are taken for granted; the luxury of walking, visiting, going out and doing the things that bring you joy and peace. Imagine not being able to do them, imagine wanting to go make money but not being able to because you body won't let you go for that long.



Yet I am grateful, grateful for all I do have. A nice place to live where it is peaceful and safe, a devoted husband, electricity, water, a decent vehicle, warm showers, food, and people to talk to when I feel up to it. There are people around me who have worse problems and some not so bad and some different. We all want the same thing; to be loved and cared about. and to care about and love others.

A person gets to feel deserted when they become disabled. Those who are not disabled mostly just ignore us or don't understand what we are going through or develop an attitude that we are faking or just complaining. But we are not doing any of those things. Some people can handle the pain better than others. It is almost like our body's are working against us.

The friends we once had we find out we no longer have because they don't have time, they don't understand, they are afraid of us, they don't know how to deal with a disabled person, they no longer have compassion or the capacity to care. And then we find our friends who are able to love us through thick and thin...who are always there and do keep us around even though we are not the same as them anymore.

Lymphedema changes us. The medication, garments, and mobility aids change us too; we would stop but if we do we would not be able to function at all, and not everyone gets it. If you don't have a disability you go on with your lives, with your worries and cares, and don't really give us who can't a second thought. The phone calls stop. I can count on one hand the people from my old life who have come to see me since becoming disabled. I wonder where my friends are, where my family is, and it makes me just want to cry sometimes.

When I do feel up to going out I know that I am going to be "down" for two days afterwards. I can only muster up so much energy at one time. Plus I worry that people will stare at me because I look like a freak in my garments or using my walker or wheelchair. Sometimes its just not even worth the effort.

I would give anything to go back to how it was; most disabled people would. Instead we keep moving through life hoping that some miracle will happen and a cure will come for what ails us. We hope that we will be able to walk again, we will be able to dance, or go to the places that make us happy. Some days it is just more painful emotionally than others. I sure could use that hug now.