Happy New Year. Humph. Not really. I see very little to be happy about simply because the calendar has turned over another number.
I lay in bed most of today, trying to give my body a chance to recover from this stupid cold. I lay there, not quite depressed but certainly unmotivated, uninterested in getting up or doing anything. Even my body's persistent call to the bathroom went unheeded; the jug worked just fine, other things could wait. I slept, I read New Year's messages on my phone. Eventually I got up.
This time of year is always bad for me. It has more to do with the winter, with the darkness, than anything else. I can remember years ago lamenting the fact that I got up in darkness to go to work, spent the whole day indoors working under artificial light, then drove home in the darkness. This is the time of Seasonal Affective Disorder.
Now add to that the impact of ALS. This will not be a happy year for me. This will be a very difficult year, if not my last year, as I deal with the continuing losses in my arms, shoulders, hands, and general upper body. Losing my legs was difficult. Losing my upper body will be awful. That is what this year will bring.
This year will likely be the last year I drive my truck, dress myself unassisted, do my own shopping, prepare my own meals. This year will likely see my last major road trips, my last great adventures. I will, by the end of this year, lost most of my ability to do something as simple as lift a glass of wine or pour a cup of coffee.
I know there are those who will say I should be happy to be alive. I'm not so sure I agree. Living longer does not mean living better. There are those who say there are plenty of things to be happy about in my life, and they are right. That, however, has nothing to do with a new year.
I see nothing in the turning of the day, in the celebration of another 365 days of successful, stable orbit around the sun yet to come. I see a rough, hard, difficult year ahead of me. So tell me again why I should be happy about that?
i think I understand that another year for you means only a downward slope... It's got to be a hard road to travel even for the most optimistic
ReplyDeletePerson... But know you have made an impact on many people with your blog.. I've read every
Entry since your diagnosis . Almost in a weird way, feel I know you. And I thank you for the time and Energy you put in your writing.
I also thank you for your blog so much; I'm on the same road for this year.
ReplyDeleteHi Richard, nice post, not happy that you should go through this, but nicely put.
ReplyDeleteAs a CALS to my wife, i would like to add only one thing. Since this is probably one of the last year you can do all those things: DO THEM.
Do all the road trips you would like to do or you have pending and travel abroad that you want; cook the most fascinanting things each day, enjoy putting your favourite clothes.
You still can do all those things, then do them, and try to do it with a smile albeit the difficulties. Give yourself all the treats you want, many "healthy" people don´t do it. All the best. Lucas