A lot can be learned from loss, that’s what Bert told his soccer team this weekend after coming in third place at their tournament. Bert thought the tournament was a success; he viewed our losses as a way to become stronger, he said it’s all how you view loss, can you learn something about yourself, can you learn something about your team? Ask yourself what you can do differently and how can you better yourself and your team? Overcoming adversity and bouncing back says a lot about individuals and teams. This is a little peek into my husband’s determination, his commitment to being at his best no matter the adversity. He coaches those 9 and 10 year old boys the same way he lives life, always learning and growing from experiences even when the experience is loss. These days one could say Bert has endured a lot of loss with ALS entering into our lives, but he doesn’t think like that, he doesn’t view the loss as a negative, he actually becomes stronger from it, learns from it and decides how he can better himself; this enables our family to learn and ask ourselves how can we be better and how can our team be better?
This week we returned to UMass for the first follow up appointment after beginning drugs in the trial. It was a hectic trip, we were not able to leave for Massachusetts till late on Monday which got us to the hotel around 10pm, and our appointment was for 8am on Tuesday morning. Bert wanted the early appointment because we had a soccer game that evening that he needed to coach. Most people would probably have just skipped the game, but not Bert; when he does something he is committed and especially committed to those boys. The appointment was for measurements, blood, and urine. With the bag of drugs in hand we entered the clinical trial suite, nervous for this appointment because of the fear of progression as always and also because we were on a time schedule with a six hour drive home ahead of us. Bert took the breathing test first; I hate that test because in the grand scheme of this disease I really want his breathing to remain good for as long as possible. I hate everything that ALS does but most of all I hate that it takes your ability to breathe. I had to run back to the car because I forgot some of the meds, as I left the room Bert was getting ready to take the breathing test, I tried to act casual as I sprinted to the car and back so I wouldn’t miss the reading. As I was running to the car I thought for a minute maybe I should just take my time so I don’t even have to witness him blowing into that tube and seeing his face red and praying that the reading is good, but as much as I wanted to avoid, I wanted to be there for encouragement and support. I got back to the room just as he was putting his lips around the tube to breathe…he took a deep breath and breathed, excellent the little computer read…thank you God breathing is good at least for a little longer. I know what is to come, but I am always so grateful for that moment when the breathing is still good; with ALS time is measured in moments, and for that moment I was thrilled. Next, labs…there were about seven tubes of blood that needed collected. On that last tube of blood, I noticed Bert looked kind of pale and before I could speak he was slumped forward starting to pass out. The nurse and I maneuvered his head between his legs, placed a damp cloth on his neck and head and kept talking to him, in walked the neurologist wondering what we were doing on the floor in front of Bert, in a few minutes he came around and we laid him back in the chair. He was a little grey but back to his old self, smiling and joking. The rest of the appointment went well, we were a little behind schedule but despite passing out we were on our way to drive the six hours to soccer.
Bert drove the whole six hours, worried that if I was behind the wheel I would not navigate the traffic as well as he would and we might be late. We flew by the house to grab Alex and Sophia and the ball bag, and paperwork and made it to the game just in time. One would think that a person with ALS who is taking medications for a drug trial and just had a doctor’s appointment six hours away from home at which he fainted at would want to relax and maybe lay down and rest…yeah not my husband. Bert just gets so focused and he pushes forward. I was tired, but I was not about to get in the way of this mission. I actually felt happy to be rushed because we are still able to be rushed. I put the soccer back pack on, grabbed the ball bag, the bench and assisted my husband who has a lot of difficulty walking to the field so he could coach those boys. Bert may have weak hands and spasticity so bad that he moves like the tin man, he can’t always speak the clearest, but that does not stop him from living, he is not ashamed to accept help and he takes his time to explain the soccer game and teach the boys. I believe as this disease progresses he will continue to live and not be afraid to adapt and do the things he loves to do even when that may be in a different capacity, I think I better take my vitamins and stay in good shape to keep up with his enthusiasm for life.
We lost that soccer game on Tuesday evening 7-0; the boys were down, upset feeling that they did not play their best. I thought Bert would be upset, that we raced six hours back from Massachusetts only to lose the game. Bert always sends out emails to the parents after the games, explaining the game and what the boys did well, what they could improve on; it usually has a kind of moral or message that the parents can share with their children. I receive the emails, as I am Alex’s parent, so Tuesday’s email arrived and I realized Bert was not upset, he wrote:
Team,
Difficult game last night for all, so what happened? I am going to share my thoughts on this.
I did not tell the team because I did not want them to worry about the game but the team we played was in the Premier Division in the fall, they decided to move to division 2 for spring. The team is an accomplished team, strong and we do not need to be ashamed that we lost.
There were a few problems yesterday. First the other teams playing style was significantly different (they are advance for U10) than every team we have played since August. Second, we did get a slow start, the effort was light and our team was confused on how to adapt to this style of play. Once the coaches had a chance to speak to the boys at half time on some strategy changes and to put more effort in, the second half was a much better game than the first. I think all would agree. Lastly, coming off a tiring weekend at the tournament could have also played into taking a while to get going.
Again, this season is not over and we have 2 more games to play. We have the opportunity to win these games.
Bert
I read these emails as a parent of a little boy who plays soccer and wants to do well, who is 10 years old and has a difficult time understanding that he can learn from disappointment and become better. I felt like I could talk with Alex and explain how he could take that disappointment of the loss and turn it into a win. Of course I didn't have to because that coach happens to be my son’s dad:) I think Bert and the two assistant coaches on my son’s soccer team do a great job at teaching the boys how to celebrate with good sportsmanship when they win and how to learn from loss and turn disappointment into a win.
In life there are many wins and losses, we have learned to celebrate the wins with class and learn from the losses whether they be personal, job related, in sports or illness like ALS. My family has a great role model and we are always asking ourselves what we can do differently and how can we better ourselves and our team? Bert is a great example of how not every victory shows up on the scoreboard.
xoxo Jennifer
This week we returned to UMass for the first follow up appointment after beginning drugs in the trial. It was a hectic trip, we were not able to leave for Massachusetts till late on Monday which got us to the hotel around 10pm, and our appointment was for 8am on Tuesday morning. Bert wanted the early appointment because we had a soccer game that evening that he needed to coach. Most people would probably have just skipped the game, but not Bert; when he does something he is committed and especially committed to those boys. The appointment was for measurements, blood, and urine. With the bag of drugs in hand we entered the clinical trial suite, nervous for this appointment because of the fear of progression as always and also because we were on a time schedule with a six hour drive home ahead of us. Bert took the breathing test first; I hate that test because in the grand scheme of this disease I really want his breathing to remain good for as long as possible. I hate everything that ALS does but most of all I hate that it takes your ability to breathe. I had to run back to the car because I forgot some of the meds, as I left the room Bert was getting ready to take the breathing test, I tried to act casual as I sprinted to the car and back so I wouldn’t miss the reading. As I was running to the car I thought for a minute maybe I should just take my time so I don’t even have to witness him blowing into that tube and seeing his face red and praying that the reading is good, but as much as I wanted to avoid, I wanted to be there for encouragement and support. I got back to the room just as he was putting his lips around the tube to breathe…he took a deep breath and breathed, excellent the little computer read…thank you God breathing is good at least for a little longer. I know what is to come, but I am always so grateful for that moment when the breathing is still good; with ALS time is measured in moments, and for that moment I was thrilled. Next, labs…there were about seven tubes of blood that needed collected. On that last tube of blood, I noticed Bert looked kind of pale and before I could speak he was slumped forward starting to pass out. The nurse and I maneuvered his head between his legs, placed a damp cloth on his neck and head and kept talking to him, in walked the neurologist wondering what we were doing on the floor in front of Bert, in a few minutes he came around and we laid him back in the chair. He was a little grey but back to his old self, smiling and joking. The rest of the appointment went well, we were a little behind schedule but despite passing out we were on our way to drive the six hours to soccer.
Bert drove the whole six hours, worried that if I was behind the wheel I would not navigate the traffic as well as he would and we might be late. We flew by the house to grab Alex and Sophia and the ball bag, and paperwork and made it to the game just in time. One would think that a person with ALS who is taking medications for a drug trial and just had a doctor’s appointment six hours away from home at which he fainted at would want to relax and maybe lay down and rest…yeah not my husband. Bert just gets so focused and he pushes forward. I was tired, but I was not about to get in the way of this mission. I actually felt happy to be rushed because we are still able to be rushed. I put the soccer back pack on, grabbed the ball bag, the bench and assisted my husband who has a lot of difficulty walking to the field so he could coach those boys. Bert may have weak hands and spasticity so bad that he moves like the tin man, he can’t always speak the clearest, but that does not stop him from living, he is not ashamed to accept help and he takes his time to explain the soccer game and teach the boys. I believe as this disease progresses he will continue to live and not be afraid to adapt and do the things he loves to do even when that may be in a different capacity, I think I better take my vitamins and stay in good shape to keep up with his enthusiasm for life.
We lost that soccer game on Tuesday evening 7-0; the boys were down, upset feeling that they did not play their best. I thought Bert would be upset, that we raced six hours back from Massachusetts only to lose the game. Bert always sends out emails to the parents after the games, explaining the game and what the boys did well, what they could improve on; it usually has a kind of moral or message that the parents can share with their children. I receive the emails, as I am Alex’s parent, so Tuesday’s email arrived and I realized Bert was not upset, he wrote:
Team,
Difficult game last night for all, so what happened? I am going to share my thoughts on this.
I did not tell the team because I did not want them to worry about the game but the team we played was in the Premier Division in the fall, they decided to move to division 2 for spring. The team is an accomplished team, strong and we do not need to be ashamed that we lost.
There were a few problems yesterday. First the other teams playing style was significantly different (they are advance for U10) than every team we have played since August. Second, we did get a slow start, the effort was light and our team was confused on how to adapt to this style of play. Once the coaches had a chance to speak to the boys at half time on some strategy changes and to put more effort in, the second half was a much better game than the first. I think all would agree. Lastly, coming off a tiring weekend at the tournament could have also played into taking a while to get going.
Again, this season is not over and we have 2 more games to play. We have the opportunity to win these games.
Bert
I read these emails as a parent of a little boy who plays soccer and wants to do well, who is 10 years old and has a difficult time understanding that he can learn from disappointment and become better. I felt like I could talk with Alex and explain how he could take that disappointment of the loss and turn it into a win. Of course I didn't have to because that coach happens to be my son’s dad:) I think Bert and the two assistant coaches on my son’s soccer team do a great job at teaching the boys how to celebrate with good sportsmanship when they win and how to learn from loss and turn disappointment into a win.
In life there are many wins and losses, we have learned to celebrate the wins with class and learn from the losses whether they be personal, job related, in sports or illness like ALS. My family has a great role model and we are always asking ourselves what we can do differently and how can we better ourselves and our team? Bert is a great example of how not every victory shows up on the scoreboard.
xoxo Jennifer
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