Friends turn minutes into moments to be cherished.
I have lived more than half a century. In that time I have felt joy, sadness, anger, anxiety and a myriad of other emotions. Each one of them has left its mark on me in some way. I have suffered cuts and bruises, breaks and sprains. My journey is painted on my soul, on my heart and on my face. It is a badge of honour I wear with pride.
There are scars on my body and laugh lines around my eyes. I have immersed myself in my life and it was one hell of a ride! The truth of the matter is I am not done yet! There are places to go, people to see and actions to take. I’m having the time of my life in the moment I am experiencing right now. When I was a child I always looked forward to what I was hoping would happen. Now from the luxury of distance I look back on my childhood fondly. I grew up in an era when I was allowed to be a child. I played without fear of pedophiles and nuclear bombs. I grew up in blissful ignorance. I didn’t grow up until I had to. I look at children today and I’m so sorry that they seem to be missing the idyllic freedoms I had.
I live with a degenerating disease. Okay that is a fact. I find joy in my life almost every day. That too is a fact. (Yes there are some days when I am really, really not happy.) I think my eyes are too close together, my nose is too big, my hips are . . . . you get the picture. What is more important than all of that is the fact that I like myself. I happen to think that I am a very nice person. Yes I do have a somewhat twisted sense of humour but that is just fine with my friends. I am loyal to those I care about and I care deeply about those that matter. Joy is a word that describes a feeling. Delight, happiness and pleasure also describe feelings that I experience. I take great joy in my friends, my cat, my family, the world in general, with several notable exceptions of course. I will not use the words which would describe about how I feel towards some individuals, it would completely change your impression of me!
The point is I like most of the circumstances of my life. Not all of them. I’ll bet you don’t like everything about your life. I concentrate on the matters that give me pleasure, that give me a sense of fulfillment and I file the rest under pending.
The time has come to stop this ditty
the writing is so silly
but yet again I’ll show I’m witty
and pen another dilly
Then everyone would know
the genius that I am
not for me the case of woe
I mean to leave this jam
I’d wing aloft to places far
for famous I would be
never fear I’d be a star
and all the world would see
But here perhaps I think I’ll stay
a silly scribe at heart
the world of wealth I’d keep at bay
and fear a real good start
Not the last this ditty is
I’m sure I’ll pose another
sure to hope my mind won’t fizz
I’ll still be here for tother!
There are days when I feel so very alone. There is no one dealing with my problems, no one can understand what I am going through. I am alone. Yup I am. I am alone because I haven’t learned to reach out to another. I am alone because I am too proud to tell people just how alone I am. That WAS me. It has taken me a very, very long time to admit I needed help but finally accepting that I am not invincible has kept me from being so very alone. Yes there are days when I really do not want to be around people, I want to be alone. Fortunately those days are few and far between. When I was working I was around a great many people and I do feel the loss but I am able to reach out to others daily if I want to.
There is a different kind of alone that only someone with a disease can understand fully. I may look as if there is nothing wrong with me (ignore the wheelchair) but looks are deceiving. When I was walking I appeared to be healthy but I was constantly aware of my situation. I had to be. I had to be careful not to get over tired, too hot, too cold, too much stress . . . .Life was difficult. It was more difficult because people were unable to understand my needs. Often my fatigue was believed to be simply an excuse to ‘get out of’ something. Appearances mean so much and they are so misleading.
Another person with MS might understand what I am going through but even there it is difficult because this disease is so different in each of us. What they can understand is how easy it is to be misunderstood. I am sure each of us has a story or two to tell. There is sadness and there is humour. This disease is a part of my life but it is not my life. And I am not alone.