Just Because It Can Be Done Doesn't Mean It Should Be
With much excitement but a little trepidation, Lynn and I returned to church last Sunday. We had not been able to attend there since he started requiring the use of a wheelchair to get around. When he first came home from the hospital in 2010, he was too weak for almost a year; then as his strength improved he started using Rebif and just felt too bad. Finally, he switched to Tecfidera and was strong enough and felt well enough to return to church but then we measured the old elevator and realized he couldn’t get his wheelchair in it and then be able to make the 90o turn to get back out again. So we resigned ourselves to listening to the previous week’s sermon each Sunday morning as our worship participation. Then our prayers were answered and after several years of planning and fundraising, the church has expanded the building and part of that expansion was a wonderful, large, smooth-running elevator!
Last week was the first week the county had given the church an occupancy permit so the elevator could be used. We got word on Friday that all was good for us to return on Sunday. I have to admit; we were nervous. For one thing, we were not sure about where everything was or how to use it but figured we could work it out when we got there. Second, while Lynn has periodically gone to doctor’s appointments for extended periods, he has not been in a setting where he could not move around, adjust his wheelchair tilt to lie back, or be able to have other comfort measures performed for the period of time he would be in church. We prepared by limiting his liquid intake that morning while increasing his protein and carrying a smoothie for him to drink as soon as service was over. That seemed to work; no unexpected bathroom trips during the sermon.
Another concern was clothing. At home he wears layers due to his difficulty in regulating body temperature. Also, his waistline is impacted by the baclofen pump implant so getting suit pants on was going to be a challenge. Therefore, we had ordered dress pants designed for people who used wheelchairs. The butt is “out” on the pants so that the back is a panel that wraps around and snaps into place. It worked perfectly. They were also light weight but heavy enough for when he felt cool. A pull-over collar shirt completed the outfit. Since our church members usually do not wear suites, he would fit right in.
Not wanting to call attention to the supplies I carry with us everywhere in case he needs to be cathed or needs a snack, I cleaned out a backpack and loaded it up. It looked like something mothers of children might carry around and was very inconspicuous.
We were all set. We arrived and it took us quite a while to maneuver through the crowds of well-wishers coming to welcome us back as we made our way to the designated location in the back for his wheelchair. It was great to see everyone but even better to be a part of the full worship program. Being able to sing the worship songs, participate in communion, to be able to hear and see the sermon as it’s presented; all expanded the worship experience. We felt very blessed to be there and happy to know we could keep coming back week after week.
Then today came….some type of weather front is coming through and he feels weak as a new-born kitten. Not only is he weak but the tilt on his wheelchair is broken so he can’t lean back to help his body hold up his head and shoulders against the gravity pushing them down. I’ve improvised at home by putting a ramp in the bedroom and he drives up onto the ramp to create an incline so that the entire chair is tilted back but we can’t do that in church obviously. Therefore, with disappointment we decided it was not practical to try to go into church today. Not only would he have been in pain and distracted for the entire service but it likely would have set him back for several days of discomfort and extreme fatigue.
The reality is: Just because it’s possible to do something doesn’t mean that it’s a good idea to do it. Lynn has MS. Having MS means sometimes you have energy; sometimes you don’t. Sometimes you feel like breathing takes too much energy; other days you have enough to leave the house. Today unfortunately is one of those days we need to stay home. We’ll give “getting out” another chance next week.
How many specialists did you see before finding "The One"?