In 2010, I was going into work every day and Lynn stayed home alone. At that time he was still walking though he would lose his balance frequently and fall. However, being the stubborn man he was, he chose not to use his rollator unless absolutely necessary (i.e. he was too tired or had too far to walk) and would instead hold on to furniture to get around. On this day in March, I left early to head to Williamsburg to attend a conference for the day. It was approximately an hour drive to where I needed to go. I got everything set up for Lynn for the day and off I went. I had made it to the conference center and was checking in as my pager went off. I dropped by things on a chair and went out to find out who needed me. When I saw my home number, I got nervous but figured he was just checking to make sure I had arrived safely. (He gets very concerned whenever I have travel.)
I called and said, “I’m here safe and sound…no worries.” Then I heard his voice and realized that maybe I had a worry after all. He started out with something like, “I need you.” One second, I’m annoyed thinking, “what can I do from here?” and the next I’m scared and I’m thinking again, “what can I do from here?” He explained that he had fallen when he tried to get out of bed and had been trying for an hour to get up. He was exhausted and panicked and obviously scared. I did my usual nursing telephone assessment (are you bleeding, can you breath okay, anything hurting, did you hit anything on the way down…) I asked him about calling an ambulance but we didn’t have a key hidden outside and there would be no way for them to get in and no one else was at home for me to call to run over there. So I told him to hold on and I’d be there as soon as I could. I grabbed my things and took off.
By the time I arrived home, Lynn had been lying on the floor near a heating vent for about three hours. He was exhausted from struggling to get away from the vent; dehydrated from the heat; emotionally distraught from fear and frustration. He was overheated and started vomiting shortly after I got him off the floor (which was very difficult by this point). He was in bed for the next two days and was never the same after that. To this day, he’s now afraid for me to leave him alone for any significant period of time and panics at the though of me being far away.
That day marked the day our lives truly changed due to MS–more so than being diagnosed; more than his losing his job; more than anything that has happened since. That was the day he became DISABLED. That’s when he faced his mortality and he realized that life as he knew it had changed and he was no longer in control.
That’s also the day we became “disconnected” from others After that I started staying home full-time to work and only went into the office for meetings and then only if I had someone to stay with him. We became more isolated. Afraid to be around anyone who might make him sick, we stopped going to church. Limited to a wheelchair (because now he was afraid to walk on his own) we could not visit friends because there was no wheelchair access. I could not go visit my parents who live five hours away because their home is not wheelchair accessible. I could not leave him along to go shopping so I shopped via the internet. I couldn’t visit anyone so they had to come to us (and since we live in a rural area, that was not very convenient.) I realized that if we kept going that way, depression would set in for both of us and his condition would deteriorate even more.
So we had to find ways to get connected! I started asking for help from church. We have a wonderful church member who has created a ministry of sending email messages to members to keep anyone who wants to know up to date on prayer requests and praises or requests for assistance. I sent email requests for help and before long I had the help I needed and the process of connecting again began. Our families and friends now come to us more often because we have reached out and asked for help…and they give it abundantly. Even our stent(s) in the hospital last year served to connect us to others. Through that visit I came up with the idea of this blog by talking to the wife of another MS patient.
And through this blog, I have connected even more. I connect to people who have MS, people who know people who have MS, people who care for people with MS. Some live close by and some live very far away. Some know very little about MS and others have lived with it for 20-30 years. We are all different but we all have a common connection–MS or caregiving. That bond makes us family and friends instantly–a connection that brings us together even though I would not know most of these people if I was sitting across from them. But through this bond of our desire to care for each other and relate to each other,we are connected on an intimate basis.
The National MS Society is starting a similar connection on March 12. It’s called MS Connection and will be located at http://ntl.ms/MSconnection. It looks interesting and looks like a way to help us all make more connections so none of us have to deal with this condition alone. Check it out when you get a chance. I think you’ll find it has lots of potential.