A blog about my life: having multiple sclerosis, having a disability, my faith journey, and the interplay of these and other things. Statement: These are my personal viewpoints and are not to reflect anything other than my personal opinions.
Sunday, August 31, 2008
Groups
In my world, I've always been on the outskirts of several different groups. Now, I'd say my biggest focus is in the disability arena, so that could be a group of people who have MS, or people who have disabilities. Now, if I want to go out and broaden that group, or to reach out and make it a part of mainstream society, we are just not there yet. So many people who do not have disabilities simply don't "get it." Often times, I feel like we are MIA, so if we are to join with mainstream society, that won't work--we're forgotten. Then I feel like I must fight for understanding and inclusiveness--where are we in advertising? Where are we in mainstream media? We are invisible, so how can we take our small, unrecognizable group, and merge it with something bigger.
First, we need our group more recognized. So when I go skiing and handcycling, instead of people staring or gawking, we need to feel part of "the crowd." While some may not view this as being recognized, it is, in its own sense. Then we have wonderful people who are volunteers who often make our lives as athletes possible, and they perhaps bring us closer to being included in mainstream society. And then, beyond the volunteers, then we need to be seen as included in mainstream society. Until then, I think our group is important, and needs to remain as its own entity.
Another part of this is understanding. No one "gets" what it is like to be in another's shoes. But within disability, there is more understanding. Someone else who uses a wheelchair certainly can relate to me using a wheelchair. Someone who uses a wheelchair will probably best be able to coach me. And so I guess I don't want everyone else involved, especially when they they don't really get it. So can our group expand to be more mainstream? Yes, hopefully. When? Who knows. That is a good question. If anyone saw the Home Depot commercial during the Olympics, you saw inclusiveness. That, I suppose, would be the aim.
God, please help us all to "get it," when it comes to other cultures.
Monday, August 25, 2008
Then and Now
18 years ago, in a town not so far away ("Ft. Fun") lived a high school girl named Beth. She loved being with her group/culture--the runners. In the summer, one morning each week, "Coach" would pick her up, then Kirsten, and head to the foothills to run up the switchbacks. Along with being with the small group of friends they met there, what made the early trip worth it was getting to the top of the switchbacks, pausing (rest break!), and seeing the beautiful Horsetooth Reservoire, still in the early morning hours.
Many years (18+) later, the same girl, Beth, couldn't run, but she was still and athlete who was willing to get up at 4:3oam to drive (had to do it herself now) to the mountains to be with some of her favorite people who shared her passion for being together and handcycling. This weekend, the last weekend of group handcycling, a van then drove the group closer to Glenwood Springs. Handcycles were then unloaded and the group cranked 15 miles into Glenwood. They rested in a park, Quentin and Beth "flinging" themselves off their bikes and onto the grass--you can't do this without a handcycle, but you wanna try? The van driver eventually found the park, and the handcyclists relaxing on the grass. They were so relaxed that he asked them if they wanted their wheelchairs, and as he left to get them, an anonymous (though not Beth!) handcyclist added the hilarious and sarcastic comment "hey able bodied person, do you want your feet?" Beth laughed so hard the tears almost came.
In both "stories" Beth returned home feeling fulfilled, loving that life, though she was really tired after the handcycling and confirming temps were in the 90s that day. So, there's a tiny bit of Beth's world lately. Returning home, there's some stress--she's giving her kitty fluids under the skin daily to fight renal failure, and is going to have an MRI of her hip soon because steroids over the years may have caused some damage--ouch. But all this is do-able and fine when she has fulfilling experiences like this weekend's, with something telling her to go, go, go...
Tuesday, August 12, 2008
I believe I can fly
I believe I can touch the sky
I think about it every night and day
Spread my wings and fly away
I believe I can soar
I see me running through that open door
I believe I can fly
I believe I can fly
I believe I can fly
Such interesting lyrics, especially in light of starting Kindergarten, for everyone involved. Everything is so new, different, and somewhat chaotic. But yet, I suppose it all will even out. And maybe someday, I'll run through an open door again.
Sunday, August 3, 2008
Abundance
Recently I moved positions at work and into a new building, the building where all the big-wigs are. But in that building I met Willy, the one who has been there each day as the custodian. Always, he smiles. To see him, I smile. The exchange of smiles brought us a friendship, where I learned of his family, he of my family, and I also learned he carries a deep faith with him. So many times he would point at me and say, "Something special is going to happen to you, Miss Beth." And then he stopped specifically by my cube one day recently to say goodbye. Someone with more seniority is taking his job and he will have to work nights in a different building. He is a gift to the world and I am saddened that my friendship with him was so short-lived (yes, I cried). His parting words, of course, were how something special is going to happen to me. He told me he used a wheelchair for 3 years (other reasons). I wish things could get better for me and though he sees the something special as me completely ditching the wheelchair, perhaps that something special was his friendship. And of course, it wasn't with one of the big wigs. That just wouldn't be me. His friendship was God's abundance.
And then there is the person from a different dept with whom I have to deal at work. She is older, thinks she owns Kaiser, and thinks she is teaching me how to do my job despite the fact that no one likes her, and she really is just making me feel like growling. She does want to walk all over me as the new and relatively young one. I struggle with wanting to lash back. I don't really want to do that--that goes against what I believe I should do. And yet, I cannot have this walking on taking place. It's a delicate balance. I think I've figured it out, but I really wonder what God's answer would be. Is there a gift somewhere in there?
And for final thoughts, my daughter started Kindergarten which is an adjustment--she gets tired and tries my patience at the end of the day. While trying my patience, the heat is trying my patience--she's melting down emotionally while getting into the car, and I'm melting down putting the wheelchair in the car. I am melted emotionally by a cat in renal failure, who seems relatively ok, but I'm giving her "cat dialysis" (fluids under the skin) regularly. It all seems like so much right now, but it did seem like too much so things are down one notch. Those of us with MS continue to mosey along, cognizant that whatever gifts of mobility we do have may not be with us forever.
Thanks be to God for the abundances he has given me. Now I'd better go see what my husband and daughter are doing--I hear noises from the trampoline!