The Loneliness of The Stroke Survivor

There was one subject that kept coming up when ever I spoke to other Stroke Survivors and that was just how lonely I would feel.

To begin with I was dubious

But when you actually think about it of course you would.

The first and most obvious reason for this loneliness is the Stroke itself. A Stroke is a very individual thing, in two ways. Firstly, every Stroke is different. Secondly, every Stroke happens inside your head. Even the deficiencies that a survivor may be left with are as a result of the damage to the brain and in many ways are the ultimate in psychosomatic injuries.

For me the first feelings of being alone were at the time of my last Stroke. The main reason for this was that like many people mine happened during the night and not wanting to disturb my partner I even moved to another room (See Post: Attack).

The next time I felt alone was as I sat in the side room of the Stroke Ward a hours hours after being diagnosed as having had a Stroke. It was not yet confirmed, only the MRI Scan would do that (See Post: MRI Scan) but it was almost certain. It was early in the morning and I was dazedly watching the lights of the city below. My partner had returned home a couple of hours previously and I had not seen a nurse or other member of hospital staff in some time (See Post: Hospital - Admission). In those hours the mind has plenty of time to think and some of the concepts running round my scarred brain were:

Fear

Pain

Frustration

Anger

Confusion

Anxiety

Loneliness

Loneliness was the one that began to take up more and more of my limited cognitive capabilities.

The structure of the hospital, both physical and operationally, appeared designed to increase the loneliness of patients. Being in a side room certainly did not help. The operational procedures in play on the Stroke Ward, with its limited visiting hours and what appeared to be staff shortages, meant that I was on my own for much of the day and night (See Post: Hospital - Inpatient). Even having my MRI Scan dug into visiting time. Where was the flexibility of the hospital staff and procedures?. The overall feeling of loneliness engendered by my stay in hospital, short though it was, were exacerbated by my discharge (See Post: Hospital - Discharge) and the start of my readmission into the wider world.

As with everything around Strokes the journey back into the world is highly individual with some being easier than others. As mine involved arriving home to a dark and empty house to be greeted only by Bruce, the dog, (See Post: Arriving Home) I leave it to you to judge which it falls into.

The loneliness I felt only grew as I started to come to terms with what had happened to me. Slowly, I began to understand that the world I had known prior to my last Stroke was one that I could never return to and that the first part, at least, of the journey to my new one was one I had to undertake myself. It was obvious that my previous lifestyle had had led to my Strokes and I had to workout what that meant. For me it seemed clear that it was necessary for me to question every part of my life.

As I did so the list of things adding to my feelings of loneliness I began to grow.

The Loneliness of the Dark was an early addition. I was finding sleep hard to come by, resulting in many many sleepless hours while the rest of the house slumbered. It did not matter if I stayed in bed or rose, my mind struggled regardless. Almost without exception first thought that went through my mind when I woke was 'Good, I’m still here!'. The night is still a thing to be scared of and the morning continues to come as a surprise.

Next to arrive was the Loneliness of the Light. The searching rays of the sun highlighted the true distance between where I was now and my previous world. It was in the light that I saw the world moving on with increasing pace. A pace that I had the feeling that  I would forever struggle to keep up with. The world I was left watching included those closest to me. Not surprisingly they had to carry on with their lives. I have a friend, who while not having had a Stroke has suffered two life endangering and changing illnesses in recent years, who has a term for this ' … they stop grieving'. To begin with I struggled with this but as time went by and I had the space to think about it I realised that it was exactly what they do and that it was perfectly natural. That realisation only added to The Loneliness!

The next to be added to the roster proved to be perhaps the greatest loneliness. I found myself thinking about this subject quite a lot and realised that it came in many guises: the subject being The Loneliness of Failure.

My failure to grasp what was happening sooner. I struggled to understand what was happening to me. I had no route map and was finding my way through mist with a very uncertain touch.

My failure to understand what it was I needed. This was, of course,  a direct consequence of my not understanding what was happening to me.
My failure to find more effective ways of communicating with those closest to me. The more I struggled the less I seemed able to make my thoughts, worries, needs and yes, the positive points clear.

I was not the only one who failed in one way or another.

The failure of those closest to me to engage with my Strokes. There was a pseudo engagement by a simple recognition of the fact of my Strokes but not the facing up to the wider actuality. This lack of engagement had many faces. Some virtually ignored it as an actuality, except on a very superficial level. Others buried themselves in the technical side of Strokes. Then there where those who “buried their heads in the sand”.

The failure of those closest to me to give me a lot of what I needed, even when I was able to tell them.

The failure of those closest to me to communicate effectively, and in some cases at all, their own feelings.

The failure of the medical services to effectively provide what I needed. There were some honourable exceptions, RP the Stroke Nurse (See Post: Stroke Nurse - First Visit) being a case in point, but those failures stretch back to my diagnosis with Horner’s Syndrome (See Post: Horner’s Syndrome).

Perhaps the greatest failure was mine.

The failure to understand what those closest to me were going through. In the selfishness of my Stroke I forgot that those closest to me were embarking on their own journey and that their destination was just as uncertain as mine. They were dealing with their own demons and were having many of the same thoughts as I:

Fear

Frustration

Anger

Confusion

Anxiety

And yes_ Loneliness

The only thing I put forward in mitigation is that I had had a Stroke or two.

The culmination of all this failure was a drifting apart into even further loneliness, which brings us back to the beginning!