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Get Busy Living

By David Chapple

his was a very busy and fun summer for me because I was on the road with Mike for about three weeks straight.  We volunteered at an AAC camp in Colorado in the middle of July then and we were home for just three days before we were off to Pittsburgh for the Pittsburgh Employment Conference for Augmented Communicators or PEC.  After Pittsburgh we were equally drained both emotionally and physically, because of events that happened on our trips to change us.  Then seeing Mike almost die right in front of me changed my prospective on a lot of things. 

Volunteering at camp was a very rewarding experience for us!   However, we had seventeen hour days so it was exhausting also.  At the end of the week I was glad it was over so I could actually rest, but I was heartbroken having to say good-bye to the campers.  Weird how you can get attached to people, especially kids, in just a week.  I will never forget what a camper said to me with his communication device before he left, “I am glad to have you in my life.”  At that point I knew I made a difference!   I needed to make changes in my life to be a more active person socially and professionally to keep this momentum flowing. 

I was going back and forth in my mind about attending PEC this year, because it was right after camp.  I was thinking it would be the same old thing.  Well, the conference itself was very worthwhile, but what happened outside the conference changed my life.  Ironically it was at the 1996 PEC when I first met Kate May, and we both knew we were very attracted to each other. Unfortunately, she was engaged at the time so we didn’t pursue our feelings.  This went on for the next fifteen years.  Finally, at this year’s PEC both of us were single and we let our feelings out.   It was wonderful! 

After Mike and I got home from PEC, I think we both knew a lot of things were going to change.   We were at a crossroads.  Although Mike has been my roommate for twenty years, I felt empty and alone.   Outside of those three weeks on the road, I sit on my couch alone every night watching television.  My feelings of loneliness got even worse when Kate and I became a couple.   I desired to be with her.  In the month after Pittsburgh I had became very angry especially towards Mike, because I wanted to do more and I was tired of being alone.  I do realize now it was my problem that I needed to solve myself.   At the time I was blaming Mike for my loneliness and that was wrong of me.  However, after long and heated talks, Mike and I were doing more together.  I thought things were getting better. 

On September 13^th Mike was late coming home, because he had dinner at his mother’s - something he does once a month.  When he got home he did the usual things like putting me on the couch and giving me a drink.  At about 12:30 am I called Mike over to put me to bed, but when he came he was disoriented and having trouble breathing.  Luckily my cousin, Beth Ann, moved in with us in February.   Mike had her to call 911 right before he totally lost conscience in front of me in my recliner.  Things are just a blur to me once the paramedics arrived, because things happened so quickly.  I don’t know what would have happened if Beth Ann wasn’t here.  Who would have called 911?  Would help have gotten here too late for Mike?  Mike couldn’t take care of me anymore, who will?  I knew right then I had to be focused on my physical needs, and my emotional needs would be taken care of over time.  Also, I had to be there for Mike and his family in every way I could. 

After the paramedics left I couldn’t go to bed until I knew Mike what was happening and he was okay.  Beth Ann called Mike’s mother right after the paramedics left so somebody would be at the hospital with him.  Well, as it turned out he didn’t go to our local hospital.  He was lifeflighted straight to the nearest big city trauma center which freaked me out even more.  At about 4:00 in the morning his mother called saying Mike was finally stable and they put him on a ventilator.  He remained on a ventilator for the next ten days. 

It was very hard for me concentrate on anything after the events of that early morning, but I knew I needed to get an emergency care plan together very rapidly.  As I have written in past columns, my parents physically can’t help me anymore.  My siblings work so they can’t just drop everything when I call.  I have been managing my own attendant care for twenty years so I know the right people to call first to get things rolling quickly.  My Medicaid Waiver caseworker got approval for extra hours to help cover the void of Mike not being here to put me to bed.  Also, my daytime attendant knew somebody who would work privately for me in the evenings to put me to bed after my emergency hours were depleted.  However, my emergency schedule didn’t fall into place for about a week.  Kate and her attendant came up from Texas to help Beth Ann with my personal needs.  I have to say having Kate here when Mike was at his worst really helped me emotionally, because she literally held my hand to get me through this. I never had somebody coming all that way to just to be with me. 

With the help of medical science and the grace and God, Mike finally got off the ventilator and made it home.  However, during the time Mike was away I did a lot of soul searching.  I mentioned at the beginning before Mike got sick that I didn’t like how my life was going.  For example, being alone and not having much of a social life.  I didn’t realize I could do things myself to change thing proactively instead of reactively like hiring an evening attendant to take me places.  What happened to Mike was horrible and there was a time I thought I wasn’t going to get to tell my best friend I was wrong.  I don’t know where the crossroads will take me, but I am glad to have Mike around for the journey. 

 

Next month’s column is a sequel to this November.   I had health problems and had multiple hospital stays over this time.  Hospitalization can be stressful for anybody, but when you use an AAC device it can be even more stressful.  So tune in next month for my recent hospital stories. 

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