Before I went into hospital in August 2019 I had some ideas about Intensive Care Units (ICUs) and of people in wheelchairs. Now that I’ve spend close to 6 months in hospital, I’ve found that my ideas about both of them have radically changed. Having experienced both of these, I now can speak from personal experience.
I entered hospital on August 9th 2019 in Dauphin Manitoba. The Dauphin Hospital is typical of small city hospitals in that they deal with all kinds of patients but they specialize in none. Approximately two weeks later I was transferred to the Health Sciences Centre(HSC) in Winnipeg Manitoba. HSC is a huge complex that specializes in all sorts of illness and injuries and therefore is the ideal place for me to be for treatment and recovery.
Now for those of you who don’t know, I was diagnosed with Guillain Barré Syndrome (GBS) which is an autoimmune illness that affects the outer coating of the nerves. In doing so it causes the nerves to “short circuit” and some form of paralysis occurs. I was eventually paralyzed from the neck down. You can read more here: GBS & Me
About two weeks after arriving at HSC I was told that I was being transferred to the ICU and that I would be intubated. This scared the life out of me, and I whispered into my doctor’s ear, “Am I dying” and his response was “Not today!” [Note: I whispered because that was all the strength I could get from my voice.] In all my knowledge, people who went into the ICU didn’t come out! So I may not die “today “ but it was on the horizon, at least in my mind.
So here I was in my way down to ICU to be intubated and I was terrified. Even though the doctor had assured me this was for the best, my mind told me otherwise. People who go into ICU never come out. So while my doctor had told me that I wasn’t dying today, it didn’t mean I wasn’t going to die soon! They gave me anesthetic and I fell asleep, and the next thing I remember was being woke up by a nurse and I felt this tube stuck in my throat. I found out I was one of the luckier patients and also one of the easier to wake up patients, because by the time I was intubated, I was already paralyzed from the neck down so I couldn’t grab the tube and pull it out. Many patients actually do attempt it and have to be tied down to prevent it from happening.
So I made it through the procedure, but I had a long way to go. My doctor told my wife that if I’d been a little bit longer getting to ICU, I may not have survived! Which kind of contradicts what he told me, but so be it. After the procedure I lost the ability to communicate. I had a large tube in my mouth which made it really difficult to even mouth words, and I couldn’t move my hands so I couldn’t point or gesture. It was frustrating for me, my wife and the nurses and aides. I knew what I was trying to say but no one else did!
Slowly, however things got easier. I got a tracheotomy so the large tube was removed from my mouth. I still couldn’t speak, but I could mouth words with some limited success. I was making progress, I could feel some movement coming back into my fingers, then my hands, and then my arms. Instead of mouthing words I could type into my iPhone! Communication was possible and so was surviving the ICU. There was talk of transferring me to the rehab unit! And that eventually happened. I had made it out of the ICU, but I needed a wheelchair to move around, and that brings me to part two.
I was in a wheelchair just prior to my being transferred to the rehab facility but the chair was considered as a transport chair and not a self wheeling chair. The wheels were set too far behind the seat to allow for comfortable rolling. My advantage though is that I have long arms, so while it was certainly difficult to wheel my chair around, I could do so for short distances. My problem in getting a self wheeling chair is my height and leg length. I’m 6’5” tall and a lot of my height is in my legs. Regular wheelchairs were just too uncomfortable for me, but eventually Occupational Therapy was able to customize a chair for me and I was able to really begin to exercise my arms and do some exploring.
So my thinking on wheelchairs was similar to my thinking on the ICU, that once a person is put into a wheelchair they’re in it for life. But I very quickly saw the err of my thinking. On my unit there are about 40 patients in various stages of rehab. Most start out using a wheelchair, in fact some are even in self propelled chairs because they lack arm strength to push a regular chair.
Over my time in this unit I’ve personally witnessed a number of these patients graduate from a self propelled chair to a regular chair to a walker to a cane and to walking without aides. It’s miraculous to see their progression. Some go through the cycle quicker than others, and many times it depends on why they’re in rehab to begin with. My progression has been slow because the nerves in my legs have taken much longer to heal.
But I’m slowly moving up and out of my chair. I can stand and walk with assistance now and hopefully before too long I’ll be off on my own with only a cane or walker to support me in my travels. I feel the strength returning to my legs each and every day. I made a promise to my wife at the start of my journey that I’d walk out of the hospital, and I will!
As I moved throughout the hospital as my condition first worsened and then gradually began to get better, my ideas about things changed. One valuable lesson I’ve realized is that our world is not designed for people in wheelchairs. Over Christmas my wife and I spent some time in a hotel room that was handicapped accessible, and the first thing I noticed was how difficult it was to open the room door. If I’d been alone, I wouldn’t have been able to open the door. Tables in restaurants are not designed for wheelchairs, neither are hallways with soft carpets. These things need to be addressed if we are going to have a fully accessible society.
I have gained more respect for people that are in wheelchairs for life, or long term. I’ve had a taste of how difficult it is and how things need to change. Hopefully we’ll see those changes occur.