"Facing New Health/Life Realities"

Let me begin by assuring everyone that my intent in blogging is not to be an obnoxious nuisance. It is not my intent to bore you with health reports, reworked sermons, social commentary, or life stories. I really do understand that not everyone is going to enjoy/appreciate/care about all the different topics with which I choose to deal. I know some find it too depressing to read about how ALS is impacting my life or are tired of hearing about it. I know some of you find reading sermons almost as boring as having to listen to one! I understand that some don't share my political and social views and thus choose not to read those posts which might reveal how much we differ. Really, I understand and want to assure you it's OK not to go to my blog. I don't know if you do or don't anyway! Those of you receiving the email reminders that I've posted something new, feel free to ask me to drop you from the list. My feelings will not be hurt. Now, you learning about new posts on Facebook, I hope you don't unfriend me but instead choose to "Hide" "Giving Wings to Thoughts" posts.

I blog because:

I need something to do - to feel that my continuing to live serves a purpose.
It's therapeutic for me to try to put what I'm thinking into words on paper.
Others claim some of the things I am pondering help them with their own musings.
Friends and family encourage me to share.

Well, before I'm accused of stalling - which I'm afraid, quite honestly, I'll have to confess some of the above is - I suppose I should get to the point of the title of this post: "Facing New Health/Life Realities." So, warning: this one deals with some recent physical happenings and the resultant changes in the way we live!

Over the last few months I've become more and more nervous/concerned about my standing on my legs and holding onto my wheelchair and toilet bars and shower bars and then locking my legs against something while I pulled down my pants to do whatever I needed to do (sorry for the blunt details!). More than once I caught myself and was able to steady myself enough to keep from falling. Thus, I was becoming more and more reluctant to go places where I would have to deal with unknown spaces and situations. That was not the me before ALS. I loved the new, the adventurous, the challenging. That all changed last week while on a recent mini-vacation.

Dorothy found a motel in St. Joseph, Michigan and we invited the kids and grandkids to join us. Our daughter, Megan, and son, Evan, were unable to get away, but son, Jeremy and his wife, Meladie, and children, Corinne & William, fortunately were planning on some time away from Tiffin that same week. The plan was for Dorothy and I to leave on a Sunday morning and arrive in St. Joseph on Monday afternoon with Jeremy's family meeting us there on Monday evening. We enjoyed a leisurely drive on Sunday through northwestern Ohio stopping for lunch with some of my sister Phyllis' family at McDonalds, a stop at Putnam Heritage to visit mom and aunt Dorothy, and a garage-visit with some of Dorothy's sister Susie's family in Defiance. (We were forced into the garage by a thunderstorm that was accompanied with some of the loudest thunder I've ever hear! It was actually somewhat frightening!)

We finally arrived at the Holiday Inn Express near the outlet mall outside Angola, Indiana where we had reservations for a handicapped-accessible room with a roll-in shower. Everything appeared to be as we had hoped and needed it to be. When we got up the next morning we decided I would shower in case the motel accommodations in St. Joseph weren't as accessible as what we currently perceived. (One of the things we've learned on this handicapped journey is how unbelievably different are the motel, restaurant, and restroom attempts at providing handicapped helps and how overwhelmingly impossible it is to provide appropriate helps for all handicapped realities - not intended as a political statement!)

Well, as soon as I sat down on the shower bench I knew it was too low and it was going to present a challenge for me to get back on my feet and into my power wheelchair. After Dorothy finished bathing me, washing my hair, and drying me off, we began the grueling ordeal of trying to get my feet enough under me for my arms to be able to lift my dead-weight high enough for me to lock my legs in place and then transfer to the power wheelchair. After a few unsuccessful attempts I admitted that I was going to need additional help getting to my feet and into my chair. Dorothy first put the bi-pap on me to keep me calm and enable me to breath easier despite the anxiety-producing situation  and then called 911.

Within a few minutes, four burly paramedics arrived and professionally, compassionately, and competently went out about their ministry of providing physical help and authentic kindness. I've provided plenty of pastoral care over the years and I cannot say enough about the wonderful way those guys did their job physically and pastorally to both Dorothy and myself! (Episode # 1)

After a few hours we proceeded to St. Joseph. (I have to mention the brief stop at Chocolate Garden along I-94 on our way. If in the area, take the time to stop! Yum!)  Since we arrived so early in St. Joseph and our room wasn't quite ready, we had an enjoyable afternoon acclimating ourselves to this wonderfully family-friendly lakefront community. Mid-afternoon we checked in and again found the accommodations at Silver Beach Motel to be as advertised, and what wasn't quite as we needed it to be the staff went out of their way to correct it. They were spectacular!

Around dinner time I decided to go the bathroom before going out to eat. While I'm not sure exactly what happened I'm going to assume that my legs gave way and down I went while transferring from my power wheelchair to the toilet. (I had learned my lesson back in December, 2012, when I had a near fall at an OSU basketball game in a restroom. It's better to fall than to over-exert myself by attempting to catch myself and holding myself up.) Still, I was heart-broken. For the first time, I was on the floor because my once strong legs couldn't do it. For the first time, I immediately knew there was no way I could get back on my feet on my own and didn't waste energy trying. Dorothy again quickly got the bi-pap on me and called 911.
Again, within a few minutes one very strong, compassionate paramedic arrived and "professionally, compassionately, and competently went about his ministry of providing physical help and authentic kindness." Folks, the men and women who provide this service in our communities as paramedics deserve all the support we can offer them. (Yes, that is a political comment!) (Episode # 2)

The next few days included watching the grandchildren play in the fountain water park, ride the carrousel, and enjoy the Children's Discovery Museum. It included wonderful meals, ice cream, walks along the bluff, sunsets, and a visit from a college friend and teammate of Jeremy's, Rob Lydick and his wife, Patti, but no more falls or 911 calls. This was primarily because my son was present offering extra physical strength whenever I had to transfer out of or into my power wheelchair.

We returned to our home in Columbus/Powell on Thursday afternoon. I was able to successfully attempt my normal way of getting around and falsely rationalized that what I had experienced earlier in the week was a fluke and probably the result of the stress of  being away and the unknown. The next morning cracked open the door to our new reality.

Friday morning, July 12, after Dorothy again helped me with my shower and dried me, I struggled more than normal to get to my feet from the shower chair. Again, I'm not sure whether my legs gave way or I slipped off the chair or I slipped on the shower floor but down I went. And for the third time in one week, Dorothy calmly put my bi-pap on me and called 911. And for the third time in one week, the paramedics arrived - four of them "professionally, compassionately, and competently went about their ministry of providing physical help and authentic kindness." To be sure, I was more upset, emotional this time. To a person they offered encouraging words, reassuring me of their availability and  informing us of a unique program for people with special needs. They were great! Kudos to the Liberty Township Paramedics! (Episode # 3)

I spent the next hour in my wheelchair with my bi-pap on to try and lessen the work of my breathing muscles and to regain some energy for the rest of the day. Then came the life-changer. I had to go to the bathroom and for some reason assumed I was back to normal - got off my wheelchair, onto the toilet, did what I needed to do, got up and down I went again. Bi-pap on, 911 called for second time in 1 1/2 hours, paramedics arrived and did their thing with grace and understanding and I shed a few more tears as the reality was setting in big time now - no more transferring by depending on my legs! (Episode # 4)

And so, over the weekend we learned to transfer with a sliding board from wheelchair to shower chair and from wheelchair to bed. I reluctantly agreed that Dorothy would have to wipe me. I accepted additional help from Dorothy to get dressed and undressed - still much to learn here we both agree! Not as comfortable making plans to go places with unknown restroom facilities. Using my bi-pap more, hopefully because of the heat and increased anxiety about changing health and life realities. Reluctantly accepting not having to take a shower every day - frankly, it has been more helpful than I thought it would be, less energy expended.

So, there it is - more than you ever wanted to know! I used a lot more words than I planned. Sorry.

Peace and God's blessings on you all!

(Appendix: (FYI if you didn't know and probably more than you want to know!) Dorothy has been drying me after my showers for at least two years. I finally agreed to let her help me with showering about a month ago. It was just too exhausting. I have been using a urinal for about a month which is much safer than transferring and helps conserve energy. This is but a tip of the iceberg that is ALS. PALS I follow and know are dealing with much more lack of muscle use than I am, but we know it's in our future as well. Thanks for your continued prayers and support!)