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Gethsemane Church of Christ

Going Out Isn't Easy

For most people, deciding to go somewhere is simply a matter of making the decision to go and then going.  For people who are mobilized through the power of a wheelchair, that process is a little more complex.
Lynn and I have not been to church since he was hospitalized almost two years ago.  He is now stronger and he is starting to adapt a bit better to the Rebif shots so we are considering trying to make a trip to church.  However, for us, that takes a lot of planning and foresight.
1.  What will he wear?  Lynn currently dresses for comfort and convenience.  Comfort related to the movement of limbs that need to be positioned, careful selection of where seams occur (since sitting on one for long periods when you cannot shift yourself is very uncomfortable), and something that is not binding, scratchy or constricting.  Usually he wears a long sleeve T-shirt and compression shorts with knee-high toe socks.  Not the most fashionable outfit but very comfortable and functional.  The other consideration is the ease for intermittent catheterization or if he’s using an indwelling foley, location of tubing and bag. Since he wears his same outfit to doctor’s appointments as he wears at home, he has not had on a pair of dress paints since PH (pre-hospitalization).  Does he have a pair that fits and could be comfortable for at least three hours?  Would they easily accommodate catheter needs?  That is yet to be determined.
2.  Bladder needs.  If we are making a trip to the store or doctor’s office, I take catheter supplies and cath him discreetly in the van or public restroom (if the location has a unisex and private restroom available.)  If we go to church, that’s an issue. He can’t leave in the middle of a service to be cathed; that would be disruptive.  However, he hates wearing an indwelling catheter in public with a tube leading to a bag of urine.  It’s embarrassing for him and it grosses some people out to see it–plus it makes him appear sick.  He isn’t sick; he’s mobility challenged, so to speak, but otherwise not ill. He doesn’t want those sympathetic, pity-type looks.  He wants to be viewed as whole and functional.  He doesn’t want to be written off as not being able to contribute or considered a subject of pity.  The urine bag represents that for him so it’s a struggle to make the decision to go somewhere like church with an indwelling catheter in place… though practically speaking, it’s the best option.
3.  Accessibility.  Can we get into the building and once inside navigate to where we need to go?  Before going anywhere, I usually like to do a dry run to look to see where the handicap parking is located, do they have ramps, elevators or stairs, etc. You would be surprised at the locations that you cannot access.  For example, we went to a lawyer’s office that had the required slope to the sidewalk so he could get to the front door; however, the slope was at the end of a sidewalk.  The sidewalk ran in from of parked cars.  On one side were cars and bumpers that extended over the sidewalk; on the other side was loose rocks used in landscaping and a significant dip off the sidewalk into the rock.  As he attempted to negotiate the sidewalk and move around the cars extending over the sidewalk into his path, his wheelchair wheels went over the edge and his chair very nearly toppled over into the rock.  I had to go inside and get the lawyer to help me lift him and his chair back onto the sidewalk.  Then we proceeded to the front door which was a good three inches above the sidewalk.  His chair can’t make it inside so we met in our van.  You would think a lawyer’s office would be better equipped. However, we are often surprised at who is not equipped.
Case in point–when we went to the Social Security Disability hearing in downtown Richmond.  I was amazed that there was no disabled parking available except down a step hill.  There was no curb slopping directly in front of the building.  I had to unload him and his wheelchair (that was before we got the wheelchair van and was using a manual chair) into mid-day traffic!  The entrance doors were not automatic and neither were the bathroom doors in the SS office!  Again, you would think a place that caters to the disabled would be better equipped!
Now back to my plan to go to church.  Our church is an old building.  It has an elevator but it’s small.  To get to the sanctuary, you enter the wheelchair into the elevator through a side door, then it goes up one floor, but the exit is at a 90 degree angle to the entrance door.  It’s nearly impossible to maneuver a manual wheelchair with a large man in it into the elevator and out the door one floor up.  There’s no way to get his powerchair in there with him in it due to the leg supports and foot pedals extending too far out.  So if we go to church, we will have to use a transport wheelchair.  The transport wheelchair is not designed to adjust in the ways he needs to remain comfortable sitting for an extended time.  I’ve considered putting him in the manual chair and trying to send the powerchair up without him in it but even with all limb supports tucked in close to the chair, I’m not sure we could maneuver the chair out of the elevator. If he’s uncomfortable, he will not be able to focus on the sermon or enjoy the fellowship so we have to take that into consideration.
4.  Finally, germs.  He’s very susceptible to infection.  He has an autoimmune condition, after all, so his immune system doesn’t function properly.  If he gets a cold, or heaven forbid, the flu or a GI virus, it could put him in the hospital and all he has gained since his last hospitalization could be lost again.  Therefore, once the cold weather sits in and people start spreading those nasty germs again due to being enclosed in crowded places, we will have to avoid public areas. I’ve jokingly told him I would put a plastic suit on him so he could shake hands and hug people but that might not be the most comfortable solution either.
So, we are not decided about going to church tomorrow.  If we can find clothes today, figure out the catheter question and get the backup plan in place for a wheelchair access, we might get there.  It would be nice to hear the choir and fellowship with the congregation.  We miss seeing them and being a part of worship but we are fortunate that if we can’t work out the process, we have the sermons online to fall back on.  Keep your fingers crossed that we will make it in!

God's Blessings

Often my journal entries discuss the challenges of being a caregiver but today I want to share a blessing–my church family.
Before Lynn was diagnosed with MS, he and I were very involved in our church.  We both were in choir; I helped produce drama enactments to support the sermon;  Lynn played drums for the praise band; we both played  hand bells; and we both were in dinner theater productions.  Three years ago, Lynn had to drop out of most of the activities he did due to fatigue and loss of coordination and strength.  Two years ago, I had to drop out due to my need to be home to care for him.  Since December 2010, neither of us have been able to attend church but are blessed to be able to attend through listening to the sermons on the church’s internet site.
Though we were well-known when we attended, there were many people who did not know us when we attended and I am sure that there are many more who have never met us or had any contact with our family since we had to stop attending church.  I share that fact to emphasize that the blessings we receive from our church are not due to a family connection or special relationship.  No, the blessings we receive from our church are due to the outflowing of God’s love for us through them. I think you will agree when you read what they have done for us.
First off, we are on the prayer list regularly and we get uplifting cards for all occasions and sporadically throughout the year telling us that we are being thought of, prayed for and remembered.  That is such a comfort when we live our lives in somewhat of an isolated fashion.

  • When Lynn started having difficulty walking, a group of men put in a ramp on the back of our deck so he could come in and out using the wheelchair instead.  Without that ramp, he would not have been able to leave the house for medical appointments much less any other trip.  The labor and supplies were provided by church members.
  • We asked who in our church could advise up on getting a handicap shower installed.  Within days, a shower had been ordered and two men from church installed it.  Not only was the labor free but the shower was provided by donations from the church members.
  • When Lynn was in the hospital two years ago and I was depressed because I could not decorate for Christmas, a group came over and decorated our home.  Not only did they decorate, but discovered that our refrigerator was on its last ice-cube and they got us a nice second-hand one that works wonderfully (without multiple containers to catch the leaks it produces like my last one.)  Last year several people came over once again to help with putting up decorations AND taking them down.
  • Groups have come over to rake leaves, mow grass, clean up debris after storms, and do all types of yard work.  One group came and tore down an old play house and a fence that was falling down.
  • One of the angels from our church cooks for us each month.  She fixes all of Lynn’s special diet meals and freezes them in individual containers so all I have to do is thaw out a meal when it’s time to feed him.  You can’t image (or maybe you can) how much I appreciate not having to take the time to prepare those meals three times a day.  Several members contribute to the cost of the food she prepares so that most of what he eats, doesn’t cost us a thing.  There is another Sunday school class that brings us bottled water every two weeks.
  • One of the members comes each Thursday to help Lynn with his writing (typing).  She helps him write his blogs or chapters in his book or whatever other correspondence he needs to get out so I can concentrate on my work.

If the church finds out we have a special need, they take care of it or at least help us find a way to meet the need. Every once in a while we even receive donations to help us with some of our expenses (which you know are a lot if you’re caring for someone with special needs.) I know there is much more they have done than I have listed here.
In fact, what lead me to write this was what happened while we were on vacation.  We came home to a house that had a new coat of paint, a newly stained deck, and fresh landscaping for my azalea beds!  A group got together to spend their time off this past week painting our house while we were on vacation!  What a blessing they have given us!
Our church, Gethsemane Church of Christ in Mechanicsville, Virginia, (http://www.gethsemanechristians.org/welcome/) is a God centered place of worship.  Their mission to follow Christ faithfully through word and deed and to demonstrate Christ’s love through action.  The blessings they have provided our family are not unique to us.  They have done the same for many other members.  If a member has a need, they try to help.  They are not a wealthy church or a large church; they are a rural community church made up of average people who love their Lord and each other.  We are truly blessed by their generosity and faith and by the Lord that they (and we) serve. 
I wanted to publicly thank them for their love and support over the years.  As a caregiver, I can’t do it alone.  As a person with MS, Lynn has much he cannot do.  But through the love of Christ demonstrated through these saints of the Lord, we are truly blessed each and every day. 
I hope you are fortunate enough to have such a church family as well.  Their actions are not about religion or a particular faith-based group but are instead a commitment to the Lord Jesus Christ, our savor, and our healer, who never forsakes us and who will be there for anyone who chooses to be his follower.  Thank you, Lord Jesus, for being there for us.