Duchenne reality denies me the luxury of living in terms of years, months, weeks, or days. Heck, with the shape I'm in, even hours and minutes are questionable. I'm dealing solely with moments now, and my goal is to maintain my relentless desire to seize every single one of them!Living in the moment, and feeling fortunate to be alive is what helped him to cope with DMD. He wrote in his blog on his forty-fifth birthday:
...moments accumulate and grow into futures, and futures comprise lifetimes. By focusing on moments, I can relish in looking back on them from a future that was never promised. I remember being a mere teenager and dreaming of a future....I nearly lost my life quite a few times since then, but I have survived through it all to get here. This is where I wasn't supposed to be, but somehow I made it! This is the future, and I am fortunate enough to be sitting here--far beyond my life-expectancy projected by the so-called experts--and recalling 45 years worth of moments.Scott also found love. He met Rebekkah over the internet, and they fell in love. Rebekkah is one of the rare cases of a woman with Duchenne muscular dystrophy. She lived across the Atlantic in Liverpool, England, but this didn't prevent the relationship from blooming. Though their relationship started on-line it was real. They got engaged over video chat. But, it didn't end there. Rebekkah was flown to Florida so that they could be together. During the brief visit they became husband and wife. She returned to England, hoping to come back. They never got another chance to be with each other. But, a short time with someone who loves you is better than never having the chance. He left us with a smile in his heart.
That night when my dad transferred me from my wheelchair to my bed for the night--a routine occurrence-I ran into a problem. When my dad connected me to my bedside ventilator I couldn't breathe. A tube on my ventilator circuit was disconnected, and for some reason my dad panicked and couldn't reconnect it, or forgot where it went. The frustrating part was that I knew what the problem was and the solution, but I couldn't talk. It would have taken a second to reconnect the tube, and I would have been breathing. So, he turned me around with my head at the foot of my bed so I would be closer to the ventilator on my wheelchair, but it was too far away and the tube wouldn't reach. He didn't think of free wheeling my chair closer, or taking the ventilator off the chair and bringing it closer. When he was moving my head to the foot of the bed, he forgot to disconnect my bedside ventilator's tubing from my trach. The tubing pulled tight and the trach was yanked out. I found out later that my trach was pulled out all the way out and was resting on my shirt! I thought it was just partially pulled out. It was worse than I thought. With the trach out, there was no way to connect the vent tubing to my trach. My dad called my mom and she came in, grabbed the ambu bag, but she had no way to connect it to the trach. Instead she covered the stoma and put the air piece in my mouth and started to pump air into my lungs. At the same time she managed to call 911. I heard the sirens within a minute coming down my street. Then I must have blacked out, because next I saw the paramedics leaning over me, then I blacked out again and came to in the E.R. I have no memory of being put on the gurney or the trip in the ambulance. When the paramedics arrived I was turning blue. They added a face mask to the ambu bag and continued to bag me. I didn't get sufficient air the way my mom was doing it. My mom was pumping the air through my mouth, but air was leaking through my nose. She should have connected the face mask to the ambu bag. It is great that I have two fire stations within a mile or so of me, so they were there within minutes. Any longer, and I probably wouldn't have made it.
At the E.R. they continued to bag me, while they tried to find out what trach I needed. In the meantime, my dad put my wheelchair with my vent in the van and delivered it to the hospital. They managed to get me to talk long enough that I could tell them, my extra trach was in my bag on my wheelchair. When my nurse and friend, Ernie, arrived, he connected me to my ventilator. The E.R. nurses' arms must have been very tired. Then he showed the E.R. doctor how to put in the trach. I guess the doctor had never done it before. Once I was with a new trach and connected to my ventilator, and was breathing fine they allowed me to go home. I drove my wheelchair out of the hospital and rode home in my van. It felt great to be back in my own home and alive.
This is yet another reminder of how fragile life is, especially for ventilator users. It is also a reminder to my caregivers not to panic when something goes wrong, for this prevents clear thinking. The solution was as simple as plugging the tube back in. But, panic caused my dad not to see the solution. Panic can happen to anyone. Once it starts it is hard to stop it. The frustrating part was that I could see the problem and solution, but was unable to talk to tell my dad. Everything seemed to be moving in slow motion. I felt like this was the end. I couldn't do a thing about it and was becoming resigned to this outcome. I was also angry that my life would end in such a stupid manner. It brought to mind my good friend Joe Malone, who died in a similar way. It was a sense of relief when I woke up in the E.R. I had used up another of my nine lives. At first I was upset with my dad, and when I could speak, I said,"what an idiot!". But, once I got that out of my system, I couldn't stay angry. What would have been the point of being angry? It was an accident. I had made it, so that was what was most important. It was a learning experience for everyone involved. I doubt it will happen again.
