Tue, Jan 11, 2011:
Why on earth am I doing this?
I know, it sounds crazy! I'm 39 and have spent the better part of the last 13 years doing whatever the kids want to do, leaving very little time for personal fitness or a hobby of any kind. So why on earth AM I doing this?
I've wanted to ride the MS 150 ever since I first heard about it. I thought, "If anyone should do this, *I* should." I've admired and supported lots of friends who have participated in the past. I was happy to be part of their support team, but I've always wanted to ride this ride myself. But WHY do I want to do this?
It's really about my mom. She was diagnosed when she was younger than I am now. She was always fit and active before that. I know that if she didn't have MS, she would probably have done the MS 150 herself. I want to honor the mental strength my mom has shown, especially in the last 20 years, as MS has slowly chipped away at her abilities and her independence.
When I was in college, my mom tried so hard to keep working. I had scholarships to pay for my tuition and dorms, but we still had to pay for books, supplies, and living expenses. There came a time when her supervisors at work began to doubt her abilities, then changed her job duties several times in short succession, and then dismissed her from her job as a medical assistant. It was such an insult! She was so capable and had always done an excellent job. But she came to see that it might be best for her health, so she began the process of filing for Social Security Disability. If you've never gone through the process, it's lengthy and only the persistent are successful. I think it took over a year before the first SSI check came.
When my husband and I got married in 1993, my mom could still walk (not very well, but she did her best.) We would joke, "She doesn't drink, she just walks that way." It was a weak effort to try to give a little levity to the truth. When our first child was born in 1998, my mom could get around in her house with a walker. I remember a couple of times when she fell at my house - it always scared me to death because there was no way I could pick her up and I was afraid she would be hurt.
By the time our second child was born in 1999, mom was using a manual wheelchair most of the time. She would have loved to be the grandma that could come get the kids and take them all kinds of places, but that just wasn't possible. By 2000, she was convinced that she should not be driving anymore. More independence lost.
Our third child was born in 2001 and mom was still struggling around their house. My dad had the entire house tiled to make it easier for her to get the wheelchair around. But their house was not wheelchair accessible. In 2002, we moved to the west side of Houston, leaving my parents in the Clear Lake area south of Houston. That was very hard for my mom because she didn't get to see the kids as much. We tried to make our new house more wheelchair friendly, with a ramp to the front porch. But the only bathroom downstairs is still rather inadequate.
Our fourth (and last!) child was born in 2003. That year we decided to take my parents to Disney World. This crazy notion prompted my dad to finally get my mom a power wheelchair. That made a big difference for her in the house, but she couldn't take it anywhere! So they had to buy a van that had room for a lift. It was a cheap lift, but the best they could afford at the time. It did a great job of physically lifting the chair off the ground, but you still had to manually maneuver it into and out of the van. If it was parked on a grade of any kind, the chair either slammed into the back bumper as soon as it was off the ground, or swung back to meet you and then had to be wrangled into the van. We did find Disney to be rather wheelchair friendly, but when you introduce a wheelchair, everything takes a lot more time. Unless she had it on top speed on flat ground, and then you'd better jog to keep up!
In 2005, after much pestering, we got my parents to move to the west side of town, less than 2 miles from our house. My dad and I went on several house-hunting trips to find the most accessible plan, and then I contracted to have any additional changes made. This included ramps to the garage and back porch, changing some doors, and adding a flip-down seat and grab bars to their shower. This has worked fairly well so far, but no house is perfect.
In the last year, my parents were able to replace their old van with a newer model. They got a better lift and a seat that swivels and comes down out of the van. Mom is able to make a sideways transfer from her chair into the seat, then it scoops her up and into the van. If the door opening was just a bit wider, her long legs would fit into the van more easily! But this is a HUGE improvement over the previous van! A month ago, her first chair finally died. It had a very long life and my dad made plenty of repairs to it, but it was time. The new chair is fantastic and is just a bit narrower, giving my mom access to the front bedroom in their home for the first time. Can you imagine living in a house for 5 years, never able to enter 2 or 3 of the rooms?
I really wanted everyone to understand the depth of my motivation to ride the MS 150. 150 miles over 2 days doesn't even hold a candle to my mom's daily struggle to do basic things that the rest of us take for granted. Even after 150 miles on a bike, I will be able to walk better than she can (perhaps not MUCH better, but at least under my own power!) Just thinking about seeing her at the finish line brings tears to my eyes and a lump in my throat. I'll have to think of other things at that point so I don't cause a pile up at the finish.
I hope this opens some eyes to what life is like with MS. You haven't even heard my mom's side of the story. But MS doesn't affect just 1 person. Or 400,000 people in the US. It affects the parents, spouses, siblings, children and grandchildren of the people it affects. Living with MS is not a fun ride, so the MS 150 is the very least I can do to raise awareness and research money, in hopes of finding a cure, or at least some better treatments for people in the later stages of MS. Many hands make light work. Many dollars make thousands to fund vital research. There is no gift too small to gain my gratitude! I hope you'll help, and get your friends to help. Remember, you can donate as often as you like!
http://main.nationalmssociety.org/site/TR/Bike/TXHBikeEvents?px=6533020&pg=personal&fr_id=15941
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