When does life suck?
I have been dealt a bad hand, this disease is getting worse.
I don’t walk much, we are modifying our home to make it easier to move around the house using the power wheelchair.
We have spent a lot of money on the copay for the power chair, the elevator and many other modifications.
If someone were to look in our virtual window or open our virtual door they might think my life sucks.
It could be that my life could suck if my attitude also sucked. But, for something to suck it would have to be so bad that there is nothing that can be done.
Even though I have a lot of difficulty doing things I used to do and, in fact, cannot do many things (ever try and open a bag of chips with fingers too weak to grasp the bag) I have a lot of happiness in my life.
For my life to suck I would have to believe it sucked.
I don’t believe it. I believed my life is wonderful.
When you look through my virtual window see my happiness, I do.
A new chapter
I have received approval for a power wheel chair. It lifts me 12 inches, tilts, reclines and is going to be fit to my body.
The feelings I am experiencing are mixed. I am happy to be approved but sad I need this. I fell two weeks ago and bruised myself and split my lip. It could have been much worse.
So, I know I need this but I am sad I need this.
Traveling will be better, visiting other people’s homes (if I can get in)will be more comfortable, and shopping will be easier as will eating out at restaurants.
So, the benefits outweigh the feelings and I will get used to this new phase as I have other phases of this disease.
It is what it is.
I have sIBM and it makes life interesting.
The disease is not necessarily life threatening but it changes your life. I don’t drive because I can’t get my foot on the brake pedal and I can’t walk very far or on hills and uneven ground. I can’t go up or down stairs and I have trouble lifting things very well. I even have difficulty getting off lower seats like regular chairs, toilets, couches and out of cars that are too low.
But, I can do things because of technology.
I have a mobility scooter, a scooter carrier for our RAV4, a lifting recliner for the house, an elevator for the steps to the garage, a deck that is level with the back of the house, an office chair that fits and lowers me for working at my desk or sitting at our kitchen bar or dining room table. I also have a bed that raises me to a sitting position and helps me get to my walker.
I also have a loving woman who helps me get through the daily challenges.
So, life in the slow lane means taking my scooter to the Starbucks down the hill, to the True Value gardening center, or even a little more than a mile away for a beer and chicken strips at my new favorite restaurant — The Filling Station — because they have a bar with a footrest where I can park my scooter and rotate the seat to sit, have my beer, visit with the staff and watch old shows during happy hour from 2-5 pm.
Life in the slow lane also means playing the Eagles “Life in the fast lane” and getting between bike riders going up a hill as they were competing in the Lake Padden triathlon.
Life in the slow lane means taking it easy (another Eagles reference) because “it is what it is” and I cannot change the fact I have the disease but I can control my attitude.
Success just by asking
On our recent trip to Alaska we experienced some very difficult ramps — one of which was in Kodiak which actually had steps at the end of the ramp.
I asked on board ship who was responsible for the ramp, which had been that way for many years, and was told the Port of Kodiak was responsible.
Some of you may not know I was a lobbyist who worked on many issues, even being registered in Washington State during the 80’s.
I called the Port of Kodiak and was told the cruise line worked with another company so I called that company. They called the Port of Kodiak who called me back.
We talked about the ramp and after several emails I learned they were going to work together to make the ramp be fully accessible.
Today I told an email telling me that the new ramp would be in service this week.
Here’s a couple of pictures of the ramp. The moral of this message is: Ask for what you think is needed, sometimes great things will happen. My request will help thousands.
Mark's Thoughts 