Look out from the Inside, a Stroke Survivor’s Story Part II – Fishing for Compassion

All of the blogs are taken from a manuscript that I wrote over 2 years ago. Unfortunately my cognitive abilities has declined somewhat since writing the manuscript, but my emotions have greatly improved, so references to depression, although still applicable, no apply to ME.

Fishing for Compassion.

These are the well meaning words that can cause the deepest wounds, depending on who they come from. Obviously, if they come from complete strangers, mostly I can ignore it, but the closer you are to me, the more that some things will hurt.

Certainly I don’t want to script you, but I would like offer some ideas on areas that I am especially verbally raw to.

Mostly, I don’t like to complain, or get caught up into long explanations of how I feel, and sometimes I feel goaded into that conversation.  It’s easier for me to say I’m Ok than to tell you the truth and give an information, which always turns out to be too much information.

It does not feel good when you do not acknowledge the shared knowledge of what I am going through. It would be as though walking up to a man in a wheelchair and saying “you look like you could run a mile today”. If I am confused or have difficulty speaking, I actually feel ridiculed inside, at your very well-intentioned comment that I am speaking quite well. When I struggling with a cane or walker, I know my dependency, and would rather not have that dependency, and hearing how well am walking is just a weird comment..

I do crave recognition, but what I would like is recognition for overcoming. If I am talking well at that moment, it is not without effort, and maybe not without pain, help from medication, side effects, etc. Whatever it is, I am winning a battle. It is for the battle that I am winning and action that I am doing that I would like acknowledgement for. When I am “racing” down the sidewalk with my cane, I know it’s not “true” walking, nor is it running, yet it is overcoming.  I’m handling the cane and managing the pain quite well if I am moving like that!

It is nearly impossible to provide examples that would work for any two people, as everyone needs to hear recognition in a different way. Personally, I do not like to be compared to others, the abilities of others, or the misfortunes of others, for good or for bad. Nor do I like to be compared to myself, or my past. I am fighting in the present with constant attention on the next moment of the battle.

Recognize the emotional state of where I am at. The fight that I am putting up. If I am losing the battle, and you can see it in my eyes, actions, posture, lack of mobility, thought, etc., show gentle compassion and encouragement in your words that’s it’s ok to take a break from the battle, and then to get back to battle, because you know that I am a fighter.

If we are winning the battle, don’t congratulate me for winning the war, I haven’t and I know that I  probably wont.

I have been provided with some good do’s and don’ts from my conversations with others going through similar situations and I think they can be quite helpful.

Don’t hover over me.
Do spend quality time in quantity / give me more attention than the dog or TV.
Don’t tell me “you can’t do that”.
Do let me try.
Don’t let NOT fail.
Do frequently reassure me with hugs or other physical forms of reassurance.
Don’t me constantly afraid that I’ll get hurt.

 

Part I: Looking at: A personal Introduction

Who am I?

 

Before 2008 I was a highly active and energetic individual. At work, I was a well paid IT professional. I was also a lay pastor, and a lay counselor. With several other families I helped build a currently thriving church in central New Jersey. I loved to write, and I loved public speaking. As a hobby, I loved to ballroom dance. Then suddenly, one week before my 54th birthday, I fell to the floor with what was later diagnosed as lateral medulary infarct, or quite simply “a stroke”. Although there were initial signs that I was improving during the first 2 years, these improvements quickly regressed as I had to give up driving, working and much of my independence. During this time we moved to another state.

Although I personally have retained my intelligence, I know that I do not have the emotional stability or stamina in order to be seen as someone who can be utilized in leadership such as I used to enjoy.

Because of my love of writing, in spite of the touch sensitivity pain as I type on the computer or the vision problems of using a computer monitor, I have been determined to complete this manuscript, regardless of the amount of time it would take, because I believe it will be useful to many people.

Not expectations and entitlement.

A common struggle that occurs post-stroke or post brain injury that I and many like me struggle with, is the question of seeking to find who and what we are now. This (our event, brain injury, onset and continuing of neurological deficits) is a thoroughly humbling experience. I know many who feel that even more crippling than any physical changes that they have felt are emotional challenges of dealing with those changes.

None of my blogs are intended to place demands upon caregivers, providers, or medical community, for I  have learned to be rather grateful and not demanding, and am often in awe of the persistent level of care. Rather, these chapters were written because you do care, and I want to improve my dialog with you.

What is a person?
Because the first question I asked myself, and that almost everyone asks after such an event is “what is value now?”.  I want to present my humble opinion on what I believe a person needs to feel valued as a person.  A person needs their pride in their accomplishments (not to be confused with vanity) to continuously find and accept new challenges, new goals, and new risks. A person needs their dignity to stabilize their interactions in a variety of social and interpersonal settings. A person needs their self respect to provide a support for others to lean on, for others to count on, to feel needed by others. My stroke, my brain injury has been a very humbling life event, as I was unable to reconnect my existing definitions of pride, dignity and self respect, and it has been many years to begin to find new ones.

This initial loss of identity as a person, created an isolation that has driven me to ask you, our caregiver, provider, and medical community to partner with those who experience strokes and brain injuries to assist them in what I believe to be a previously unexplored area of help and care..

We (the survivors/individuals) have a brain injury or other deficit, we are not mentally ill, we are very intelligent, and we understand that there exists no inalienable right, or sense of entitlement to your care. For example, In this manuscript, many of the pages will be directed at challenges that we face that could be disruptive to a marriage, and therefore the changes that I am suggesting are those that I believe could improve marriages. But although you, as our spouse, are there for us, it is not our personal entitlement to demand that you are to do things that I have written, for what if we were unmarried, divorced or widowed?

Elsewhere in the manuscript, pages will be directed at ideas that improve family or friendship relationships for us, but this is assuming that these individuals desire these close relationships. Certainly, we do not have the right to expect it, nor are we entitled to it. Friends and family members have families and responsibilities of their own.

Personally, my own emotions are often at odds with my intellect, I may, at times, be given to melancholy, (and in past, deep depression) even when events around me are rather cheery. So, for me also, it has been a humbling experience to keep writing this manuscript, keep discussing it with others and to keep improving it.

 

Words or Wounds.

My personal background includes 5 years as a lay pastor and lay counselor, in which time I worked with grieving people at funerals, at deathbeds, hospitals and hospices. I had some training on the right words to be used within the religious environment, and for the most part, I could see that these words were quite effective for the purpose they were designed for.

I am very grateful for well educated counselors and well meaning friends, but having talked to friends who are experiencing the same long term constant pain that I am experiencing, there is a sense of medical, counselor, spiritual and friendship cliche that our pain hears so often, and our intellect cannot override. We want to know that there is something more than cliche behind your words, but physical pain, or the side effects of medications overrides my ability to see it.

Therefore even the kindest, most well intentioned, words can sound at best like platitudes, or at worst, sting like salt in a wound to those who are hurting. It is important not to be or feel scripted in what you say, just be genuine, or if you have nothing to say, then say nothing, it is OK.