I just discovered how heavy I am. I have a relationship with gravity that has completely defied my muscles. Without the use of legs, it took me 25 minutes to move from one side of the room to the other – a distance of only five meters. I wanted to stay upright and maintain my dignity… it didn’t work. A couple of my friends have MS and they have learned to drag themselves along the floor at home. Now I understand. When one’s legs cease to operate from the waist down, they are such a dead weight that there is really no way to support yourself on your arms…. So I learned.
It’s time for me to come out of the MS Closet. I can’t hide it any longer, and even though the toughest symptoms come and go, its obvious that life is changing forever. Over the last 10 years I have had a series of ‘stroke-like’ events that have been quite debilitating. During this time I met my wife, Gayle, who has been with me as these ‘exacerbations’ come and go. Always much stronger than me, she has been my champion, covering for when I can’t leave the house and putting out all the fires and dealing with the daily issues that I cannot longer manage.
I met Gayle during a time when I was attempting to complete my bucket list before this happened. I should have realized… meeting Gayle was my bucket list…. the last important change in a life full of change.
I have steadfastly refused medication or medical intervention on the pretext that I wanted to live every second, not sit in a doctor’s waiting room and spend the rest of my life being probed and prodded. A glass of scotch or an aspirin to get over the pain and onward and upward to another day.
Today was not like that. My Valentine was hovering around me, trying to help while I did that stupid macho thing and tried to solve the unsolvable – how to move without a brain that can talk to legs.
The biggest issue to deal with is loss. It has taken a while for my head to come to accept my own mortality. I can understand the people that have bailed out of my life when they found out I had MS – they are only human and to be saddled with a heavy old man that would weigh on their time and positive attitude is obviously too much. My MS friends have also had their families and friends disappear – we are way too hard. You are forgiven. My Valentine sits with me, scratching her head.
My legs will come back, but always a little weaker and a shorter time until the next failure.
If you have been diagnosed with MS, I have a single recommendation: Do it now!
Whatever it is, don’t delay. Far more important than all the immuno-suppressants and time wasting technology is the ability to do whatever it is that you want to – now. That will be taken from you. I have visited 40 countries, eaten foods that I can’t pronounce and seen Niagara Falls, the Grand Canyon and visited the ancient city of Arles. I have met people that have touched my soul and now I’m broke. But I did it and shared the experiences with my Valentine.
As a photographer that can’t get around so much, I now spend much of my time editing and of course writing.
Less self serving than this blog in most circumstances, my blogs are generally aimed at getting people to embrace technological change, build a better environment for their children and make use of what we have in a more productive way.
But for now, I just have to figure out how to make it to the bathroom before I explode…..