It’s a thin line…

I saw a cartoon many years ago of some character saying, “I love hate, and I hate everything else.” While I lean towards the inverse of that sentiment, it is a thin line between love and hate. There are things surrounding my experience of multiple sclerosis that I hate, but all of them carry with them the opportunity to be grateful, thankful and appreciative.

  • I hate my wheelchairs – an electric one for around the house, and a manual one for out-and-about. I hate them both. Every single time I sit in either of them, I feel a sense of defeat, of giving up. When I use the out-and-about chair, due to my lack of strength/endurance, I need to have someone along with me to push.
  • BUT: I am endlessly appreciative to have not just one but two wheelchairs. I am endlessly fortunate to have such things, and thankful that they were so easily acquired. I am endlessly appreciative of the people who load and unload my travel chair and push me around in it, none of whom give any hint that they object to having to do it.
  • Similarly, I hate my walkers. Like the wheelchairs, I have two – upstairs and downstairs. Like the wheelchairs, I feel old and feeble when I use them.
  • BUT: like the wheelchairs, I am very fortunate to have them, and I can appreciate them as tools and assistive devices.
  • I hate taking all these meds every day. Pills to control high blood pressure, pills to control muscle cramps, pills to help with my…lower digestive functions, pills to (hopefully) keep the progression of MS down to a slow crawl, pills to control pains and headaches, pills to help me sleep.
  • BUT: I am deeply appreciative that I have access to essentially any medications I might need. And I am very thankful to have easy access to doctors, physical therapists, nurses and the facilities in which they work.
  • I hate my stair lift. Like the wheelchairs, every time I ride up or down the stairs, I feel defeated and like I am taking the easy way out. I find it very embarrassing if anyone sees me riding the stupid thing. I feel old and feeble.
  • BUT: I am deeply appreciative to have such a thing in my house. I can walk up and down the stairs on my own, but doing so is dangerous and exhausting. Having the stairlift makes my life a little bit safer and easier. I am endlessly thankful to my parents who paid for it, and to John who installed it.
  • I hate having to ask for help. I hate having to be accommodated. I hate that I cannot go out anywhere on my own, but have to rely on others to get me there and back again. I hate that I can only go places that are wheelchair accessible.
  • BUT: I am endlessly thankful that the majority of places I go are accessible, and that there always seems to be someone to hold a door or help me over a curb or move tables and chairs in a restaurant. I am deeply appreciative of the people who drive me places and push my wheelchair: my wife Alison, my kids Benzo and Robin, Kathleen (and Diane before her) and for countless airline employees who have assisted me through airports, onto and off of airplanes.
  • I hate the fact there are so many little things – cooking, house cleaning, doing laundry, etc. – that I either cannot do or that are increasingly difficult. I have always valued independence very highly, and I hate watching my independence fade away.
  • BUT: I am endlessly thankful that there are so many people willing and able to help me: again, major props to my wife Alison, and to my kids, and any others who step up and step in when they see me attempting or struggling with something.
  • My house is surrounded by a few acres of forest. Wandering around in, and caring for, my little patch of the planet was one of my greatest joys. I hate the fact that I have not been out into the woods in years, and probably never will again. It kills me.
  • BUT: I am endlessly appreciative of the fact that I live out in the middle of the woods. It is a bit isolating, but it is beautiful. And I am equally appreciative to live in such a beautiful house – warm and dry and comfortable.
  • Finally, I hate multiple sclerosis. I hate everything about it. Disability might have given me more opportunity for humility and thankfulness. But I would gladly trade that to be able to walk, or drive a car. The expression “you don’t miss your water ’til your well runs dry,” is absolutely true.

I am well aware that most people in the world do not have access, like I do, to the medications, doctors, assistive equipment and people to help me get through my day. I know that many people do not have anything close to the resources I have. I am an astonishingly lucky person. When ever I fall into the “poor me” pity party, I stop and remind myself of just how astonishingly lucky I am.

(A special shout out to those who responded to my pathetic cry for validation, and left comments for me. Thanks!)


Author: stephen

stephen harris is a writer, painter and a photographer who lives with his family in maine.

2 thoughts on “It’s a thin line…”

  1. Well, I tried to leave a comment once already and it got nuked by WordPress.

    Anyway – I hear ya Steve. I don’t have any where near the number of issues to deal with having crohn’s disease as you do with MS…but I too feel like every time I am forced to give in to the disease on something, it is defeating me, and i am old and feeble.

    But like you – it has taught me that I have family and friends who care enormously about me, and I know I am damn lucky to have access to the things I need to deal with the disease.

    And hell, even the pity parties have something to teach us sometimes.

    Hang in there Steve.

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