Flynn Murray's Journal
Written Mar 19, 2011 12:25pmToday marks two years since Flynn and Casey's accident. With respect to posting updates not much has changed since I last posted in May. Flynn still isn't thrilled about me writing about her and I still cannot seem to quit. The good thing is Flynn doesn't check this site. With any luck nobody will rat me out.
I read spinal cord injury (SCI) websites frequently and have found that accident anniversaries have a powerful impact on most people with SCI's. Our family is no different. The date looms out there getting closer and closer until it finally arrives. As parents we cannot help but recall the phone call from Angie, the trip to Bozeman and the post accident aftermath that has made up the past two years. As tough as it is for us it must be even harder for Flynn and Casey.
This year Flynn decided to celebrate the date. Sue and I spent the last week in Bozeman with Flynn and Casey. Last Saturday they had an accident party to recognize all of the support they have received from their friends. It was a fun event and it took some of the pressure off today.
I should back up a little and write about what Flynn is doing. In August she moved back to Bozeman to return to school. She lives by herself in an accessible apartment. Her unit is on the third floor. It faces North and provides a great view of the Bridger mountains. School is going better than ever for her. She attributes her post injury academic success to a reduction in distractions.
It is hard to believe how independent Flynn has gotten since moving to Bozeman. She has been geting by on 14 hours of assistance per week. The time is all she gets for help with activities of daily living (a phrase that means exactly what you need to stay alive and no more). The limited time has forced Flynn to learn to do things on her own. While we were visiting Flynn was accepted into a new program that will allow her additional time for support beyond the category of activities for daily living.
As a guest in her house one cannot help but be surprised by how organized she keeps things. I am not referring to dusting and cleaning (she is still Flynn and has a high tolerance for a mess) but to more important things like positioning furniture so she can open windows, organizing her kitchen so the things she needs to survive are within reach and leaving her jackets partially zipped so she can pull them over her head. We soon found out that it is best ask before touching anything. For example, Flynn's apartment has crank out windows and it is a reflex to flip the latch to lock the window after closing. This is a problem because Flynn's fingers don't function enough to release the lock. What seems like a nice thing to do causes her a problem. She said she also has trouble when we tighten food lids to tight. Once we leave she cannot open the containers.
One resource that has been especially important to Flynn is the Eagle Mount. Eagle Mount is a an organization dedicated to helping people living with disabilities stay active. Eagle Mount has helped Flynn learn to cross country and downhill ski. I told one of the Eagle Mount volunteers how much we appreciate the adaptive ski program. Without missing a beat he said "all skiing is adaptive, nobody was born with skis on, we just provide different adaptations". The comment was important to me because it sums up the challenge for people with SCI's. The whole world is adapted to people who walk. People who cannot walk just need different adaptations.
Flynn aspires to ski on a mono ski. She works at it very hard each morning she skis. It is incredibly challenging given her level of function. In the afternoon she skis on a bi ski. The bi ski looks much easier. I made a comment to the Eagle Mount volunteer quoted above about how much easier the bi ski looked compared to the mono ski. In response to my comment the volunteer said the bi ski is not rated for use by someone with Flynn's level of function. Again I was surprised because Flynn made the bi ski look like fun. I expect by the next time I ski with her she will be able to use it with complete independence.
I think a long time ago I wrote about two popular SCI philosophies. The first is based on the thought that the situation is not acceptable and the impacted person will not rest until they have pursued all possible options for a cure. The second is based on not wasting one minute of life waiting for a cure. I think Flynn's philosophy pulls from both. She is focused on maintaining a high level of fitness such that if a cure is identified her body will be in a condition to take advantage of it. On the other hand she refuses to let her level of function inhibit her from engaging with people, staying fit and developing her mind. She simply cannot waste a day. While visiting her we found ourselves exhausted everyday. She wakes up with a plan and doesn't quit until it is complete. About the time I was ready to call it a day she would make another appointment or set up a social activity. We were never at risk of over sleeping.
Today Flynn and Casey are skiing. It is dirt bag day at Big Sky. They plan to watch the powder 8 competition and ski in the parade. Tonight they are going to have dinner with friends.
As good as things have gotten it is really hard not to slide down the slippery slope and focus on what used to be. I noticed this when I rode the triple chair that runs adjacent to the Bowl at Big Sky and looked over at the South Wall. It was one of Flynn's favorite runs. In my minds eye I saw her effortlessly skiing the steep terrain and recalled how she made it look like a beginner hill. I noticed it again when I got to ski with Casey. We were about half way down and stopped to talk. He told me he hated the run and never skis it. I asked him why and he said it was the last run he and Flynn skied before the accident. The next day we watched a mom help her young child into a sit ski and we realized how fortunate Flynn was to have had the opportunities she had before she was hurt.
Such is the nature of the post accident life. This is one wound that time doesn't heal, but as time passes the lows are less frequent and future looks increasingly bright.
Flynn told me a funny story about her dog while we were visiting. She said she went to bed one night tired after sking. During the night Layla woke her whining. Flynn concluded that Layla needed to go out. She got herself dressed, transferred from her bed to her chair and got her coat on. My guess is the process probably took at least a half hour. When she was ready to go outside Layla jumped back on the bed and went to sleep. Some days being a quadriplegic isn't as easy as it looks.
Thanks again to all who have helped us get through the past two years. We have a great picture of Flynn and Casey skiing that I will put on this site as soon as I get an electronic copy.
Written May 23, 2010 10:15amI had decided not to write anymore updates because I thought Flynn should share what she wants to share and keep personal what she want to keep personal. The problem with this plan is Flynn doesn't seem real concerned about sharing anything. I suppose it is because she doesn't think her achievements are noteworthy. Without a doubt I think yesterday's activity was noteworthy so I will throw my conviction out the door and tell the story.
Since she bought her hand cycle she has ridden it consistently. When the snow was soft and she couldn't move outside she rode the hand cycle inside on a trainer. When the snow was hard, usually because the temperature plummeted, she would put on a lot of clothes and ride outside.
At some point Flynn decided she wanted to ride her hand cycle in the Fargo Marathon. As she worked to get stronger she decided the half marathon was a better choice for this year.
Yesterday was the day of the event. She was pretty excited to compete. I think the last competition she was in was a running and rock climbing event in Bozeman (this does not take into account the wheelchair time trials to the elevator at the Craig Hospital).
The Fargo Moorhead area is about as flat as water but there are a few hills on the course. They are not hills as one would find in most areas but they are a challenge for someone that only has about 15% of their function. Having ridden the course a couple of times for practice Flynn was aware of the trouble points. As a final security measure I ran the half marathon however the wheelers start five minutes before the runners so I did not really expect to see her.
After about four miles I was still in a pretty congested group of runners. I looked to my right and saw Flynn. She was not peddeling with her usual vengeance. Once I was able to get over to her she told me she had a flat tire. She said she was going across the bridge between Fargo and Moorhead and she stuck her front wheel in an expansion joint stopping her dead in her tracks and knocking her out of position on her bike. Some runners were kind enough to lift her out and get her on her way. Shortly after that her mom, who was bicyling from point to point on the course, came to her aid and repositioned her on her bike. Once repositioned Flynn took off but she soon realized she didn't have any air in her front tire. She had gotten a pinch flat when she dropped her wheel in in the expansion joint. Flynn was really distraught. She had overcome a lot of worries to get herself to the starting line and once there she wanted to finish the course.
Now that I am thinking of the worries I cannot move on without sharing some of them. First, quadriplegics have big issues regulating their temperature. The part of the body below the level of injury regulate maintaining and dissipating heat. As a result quadriplegics have to think in advance and develop ways to do what their bodies don't automatically do. On our initial practice ride on the course Flynn had experienced problems with heat and nutrition and almost had to stop. Once she developed strategies to stay in front of heat and nutrition needs she was able to put these worries to rest.
Another worry was that there would not be any other hand cycles or wheelchair riders in the half marathon. We had never paid attention in the past and had no idea what to expect. As it turned out there was another hand cycle and a wheelchair participant at the starting line. Closely related to this worry was a concern that the others would be paraplegics. With their additional function they would outperform Flynn and she would look like a slacker. Realizing she would do her best with the function she has Flynn put this worry to rest. The point is there was a lot of anxiety associated with preparing for and facing race day.
Returning to the story about the race.
We were sitting on the side of the course having completed about four of the thirteen total miles, in the rain, with the nearest of our support group about a mile away. Flynn asked if she could ride on the flat tire. Of course I told her no, it would be impossible to complete the race on a flat tire. She asked if she could ride to the next hill where we could send someone to get the van. We didn't have much choice so off we went.
Flynn did a pretty good getting to the next hill and even made it up the hill without assistance. At this point there was no telling her she couldn't complete the course with a flat tire so on we went for about four flat miles. We then came to an underpass with a steep assent. This hill turned out to be too much for the flat tire and I had to give Flynn three pushes (of course I waited for permission to before pushing).
On this hill my friend Todd (the one who organized Flynn's benefit) came buy and helped cheer Flynn on. Todd ended up running with Flynn and me for the remainder of the race. We didn't go as fast as any of us intended but Flynn completed the entire course and the only needing help at that one point.
The finish line is inside the Fargo Dome (a large multipurpose facility). It is pretty surprising how many people are in the dome. I cannot hear very well so I missed it but people told me they announced Flynn's name as she rode in.
Flynn got a lot of support during the race. I felt like I was running with a celebrity. She also got great support before the race from the Great Northern Bicycle Company (our LBS). They did a lot of work on Flynn's bike. By race day it worked better than it did when she got it. Now we will see what they can do to salvage the front wheel.
Flynn also got a running outfit from the Beyond Running store. This really put her at ease because the material was high tech and would help her manage her temperature.
All in all Flynn's Fargo Marathon day left me with two thoughts. First, how hard it is to be a quadriplegic. All I had to worry about was my shoes coming untied. Flynn had to worry about equipment failures and body failures. Second, how fortunate we are Flynn's injury was not a little bit higher. If she had any less function the day would not have been possible.
Thanks to all who supported Flynn before and during the race. She conked out for most of the rest of the day but she was really happy.
Written Feb 11, 2010 7:26pmWhat do Cinderella, Albert Einstien and seeing eye dogs have in common?
Lots of time has gone by since the last update to this site. Today I was on the phone with someone who asked if the updates were done. It made me think it was time to provide an update for anyone who still checks the site to find out what Flynn is doing.
At the time of the last update we were anticipating Flynn would start school in Bozeman in mid January. Unfortunately that plan did not work out. The big roadblock was the accessible apartment we were counting on was not available. It was really nobody's fault. It was just one of those things we needed to learn more about. We are confident the apartment will come through at some point.
Flynn was pretty down when she found out the apartment would not be available. She was really looking forward to living independently and getting back to school. A few weeks after she got the bad news she said she was going to continue to focus on gaining strength so she would be better prepared for independent living when everything comes together.
Flynn has been pretty diligent on rehab activity. She goes to PT about three times per week. It varies on how successful her advocates are in negotiating additional PT treatments with our insurance carrier. OT is about the same but it seems a little easier to get approved. I think the difference is that PT visits are based on demonstrating improvement. Flynn is in a position where her PT is focused on both achieving improvement in function and on preserving her body in a condition such that if function returns her parts are ready to work. Flynn feels very fortunate to have the PT and OT providers that are helping her. In addition to keeping her parts heathy they give her hope.
Flynn has a physical trainer that is nice enough to come to our house to work with her during the week. It is the same trainer Flynn had in high school. They get along well and she has a lot of confidence in him.
Flynn rides her FES bike almost everyday. Sometimes she gets all hooked up and then her leg spasms bounce the bike around the room. When this happens she has to stop and try again another day. Flynn also rides her hand cycle indoors using a trainer about three times per week. We are hoping she can find some hand cycle competitions this summer.
Flynn's main non-rehab related activity is tutoring math at Moorhead high school. She reads a lot of books and probably feels like she watches too much TV because we usually have a TV on when we are home. Now Flynn is focused on learning Spanish. She has a Rosetta Stone computer learning system. It will be fun to see how this works out.
Regarding the similarities question; Cinderalla, Einstein and seeing eye dogs are all funny stories Flynn has told me lately. I will go through each starting with what I consider the least significant and ending with the story that I will never forget.
Flynn was at the school one day with her dog Layla. Layla is more or less a service dog but she is the best companion anyone could ask for. Given her service dog training she can wear a service dog vest and accompany Flynn in places that run of the mill dogs cannot go. One such place is the high school. Recently Flynn was at the high school with Layla and one of the students said to another "look a seeing eye dog".
The calendar is rapidly closing in on one year since Flynn's accident. For people with injuries like Flynn's there is a pretty common belief that 90% of function returns within the first year. This is a problem because Flynn has not experienced any profound return of function. There is no doubt she is much stronger and more capable than she was following her injury but her fingers still don't work. With all of the talk about the first year it is easy for me to get down and probably a lot easier for Flynn to get down. At any rate we were discussing this one day and Flynn said I will never give up on walking. In my grandparents lifetime Albert Einstein was still working to convince people his theory of relativity was credible. If the world has changed that much in such a short time I have to believe that in my lifetime a cure will be developed that will allow me to walk with or without natural healing.
Flynn uses a ride service to get to and from PT and OT. The service has a lot of employees that grew up in foreign countries. One day a driver showed up and Flynn asked him where her usual driver was. The new driver looked at her and asked why do you like your regular driver? Flynn said she did like him because he told her stories about where he grew up. The new driver said I bet he has a lot of stories, he grew up in Sudan. The new driver told Flynn when you grow up in Sudan you have to learn to eat out of dumpsters and hide from the killers if you want to survive. He then said you grew up in Moorhead where everything is pretty and everybody is nice - you must feel like Cinderella. When Flynn finished telling me the story she said she had a much better life than anyone could ask for before her accident but even after her accident she has a better life than some people will ever have a chance to experience.
Thats it for this update. Who knows if more will follow. I would sure like to write someday that her fingers are working.
Thanks to everyone for staying in touch with Flynn. She values all of the calls, letters and email. If you ever have trouble getting in contact with her send me an email and I will make sure she gets the message.