Weekend Conversation No.2 (new group)

How do I explain and deal with people who don't understand our challenges.

Good conversation starter Marcus. And my response is one from reflection. I, at the time of feeling unheard , withdrew until I felt stronger. I didn't want people to understand me, because I knew they had their own lives and battles. I wanted people to respond with compassion and enough sensitivity that would allow me to feel safe to communicate, however that may look.

For me the knowledge of knowing each of us were our own selves prior to our strokes and our strokes unique to us, helped with the confusion of recovery. 

What was it like to know I'd had a stroke at such a young age . For me I felt ashamed that I needed such high level of care, that I needed someone else to wipe my bum as an adult, I felt such drive to recover and live my life , I felt confused about where I belonged , I felt a constant anxiety that I came across as dumb when I knew I was not.

I didn't want to explain to people , I wanted them to make up there own mind and learn.

I was a very private person before my stroke the intense shame and loneliness I felt was one I had to work through as that private person.

I seek out people who are accepting and non judgemental , I thrive on joy.

I would not wish what I have lived through on anyone.

It's a long road.

Sue

Hi Sue and everyone,

Thank you again for sharing your thoughts and fears you had when you were much younger dealing with your stroke and lost of Chelsea. I understand and had those same feeling that I wanted to stay at home and not deal with the outside world, and just start on my rehab.

That is what I wanted to do and that is wanted I did. But, I suddenly realized that I needed people around me who understand the challenges that are facing me. Of course, I have family and close friends who are aware of these tests, yet I needed and still need to 'show' the problems I have. Maybe I am asking too much?

Yet, I don’t know how to impart my doubts and concerns to colleagues and acquaintances without causing relationship problems. I don’t want to hide nor do I want to expose and reveal the total level of my cognitive deficits. I would like to find a way to get people to accept my deficits and work together.

I have put a link to Jeff Seball latest blog, “Facing & Winning the Daily Brain Injury Struggle," with talks about ‘attitude’ and how important it is. Maybe, I would change my ‘attitude’ rather than trying to get anyone to understand my problems.

http://www.tbisurvivor.com/2017/06/20/the-pain-of-our-daily-struggle/#comment-6620

Attitude - that is a personal trait hey.  We all had our own attitudes to life prior, I was told alot during recovery I had a positive attitude.  How would I have responded to that if I could have let people know at the time -I would have said "Yes - well I have just come back from looking into the tunnel death and I chose to stay.  So yes I feel pretty happy to still be here even though I am faced with all that is in front of me to sort through."

What is your attitude to how far you have come Marcus? Are you proud of yourself?

Do you feel a sense of worth and purpose within yourself?

My reason a lot for not discussing my past was:

A: I didn't want to cry when I told someone.

B: I knew that everyone responded differently to me when I told them, I didn't know how to manage peoples reactions mostly.

C: I didn't know how to put up boundaries if questions became to personal after sharing - example of this was when someone asked if the stroke had affected mine and my husbands sex life. 

D: I knew that I needed to learn how to talk about my past safely and in my own words. And all this would come "In My Own Time".  

Best Wishes and stay warm - it was a chilly minus six here this morning in Bathurst. Brrrrrrr.

Sue

Marcus and Sue I replied last night when halfway through posting I lost the lot, nowhere to be found. Shall post again. You both gave me a lot to think about. How do I explain my deficits. I open up to my husband, family and close friends. They want to know and ask with empathy. As emotional lability had been a big problem I avoid bringing tears on again. Apart from a stick,walker people are not aware I am a stroke survivor. Often they will ask 'do you have a knee or hip problem. I proudly answer'I am a stroke survivor. I don't encourage the conversation any further. At the moment deficits are too big to explain. Speech,swallowing chewing etc.  I am proud of my recovery as I was totally paralized down left side. Learning to walk again would be the hardest thing I have ever done in my life. Freezing here in Launceston.tasmania.    Jenny

Hi Jenny

Thank you for joining in the conversation from chilly Tasmania!

And how great you are able to express that you are a proud stroke survivor, and yes the effort and work to recover is just that 'work'.

Do you have a Stroke Support Group near you? Or how have you found connection to others who have experienced a Stroke?

Knowing that there are people around who you can trust will respond to you with love and care and who you trust - that is good to hear.  As times passes I still uncover truths about what I have survived even 24 years later.  And it is better for me  and my family that it is uncovered safely rather than bottled up.

Stay warm

Sue

Hi Jenny, Sue and everyone else,

A lot of things to think of our second Weekend Conversation! Well, done and I hope, little by little, bring in others to our group. A good start.

I might start with Jenny just to say that I am originally from Hobart before I went to Japan to live. Now, 30 years later, I am finding it a challenge to rebuild my languages skills, first in English and recently in Japanese. Losing the ability to communicate with my wife and sons, was a nightmare. Dealing with aphasia in my native language is difficult, more than that, a horror, but, to lose both and the skills of talking, writing, reading and comprehending, put me to survivor mode — that ever it takes to survive and avoid my fate.

So, all of us, we should be proud of our recoveries and give a hug or pat on the back!

Attitude is needed to survive and, for me, to try to limit my emotional lability. Sadly, but luckily, my uni understood my problems and gave me 9 months off from work. This allowed me to accept and figure out how to rebuild my emotional state. I am still working on this one. A lot of meditation, mindfulness, exercise, trees, talks, short naps, and long sleeps.

Sue, your ask to three questions. The first one I have answered. I am proud of what I have done. Damn, before my stroke, would never write poetry, use a diary, open my soul to people I don’t know. So, yes, I am proud and no one can take it from me.

The second and third questions: a sense of worth and purpose.

That is more difficult for me to answer. If l lived in Tasmania, I would probably deal with aphasia considering my deficits are mild after a long hard rehab. I would have a sense of worth and purpose because I know I could find a new job albeit part-time or a less stressful job.

However, I live in Japan. There are not many jobs for non-Japanese, aphasia affected worker, with a very dodgy heart and brain. The only one is the job I have now - English lecture. Ironically, my deficits are my job — talking, writing, listening, communicating and teaching international studies.

Answer: it is hard to have a sense of worth and purpose when I live in a world that has become strange and demanding.

I send a video on the forum called ‘Unplayable piano’ - I am going to use my unplayable piano at work and define my sense of worth and purpose. I have a lot of teaching left in my damaged brain, but I will only use those parts that are ok, and the others — my deficits - I will try to put them to the side.

A very long post this morning. I was going for a ride but it will be very hot and humid for me (again, the stroke took my ability of deal with the heat), however, all this writing will improve my writing skills and mental state.

Look forward to your posts and comments.

Marcus

An interesting article to read this cold day in Bathurst and Lonnie .. 

Title: "Normal Has Left the Building"

http://www.jeffhuxford.com/theblog/building

Sue to answer your question about support group. We do have one that is merely people having a coffee together. I went to one meeting, nothing about stroke was mentioned, a pointless exercise for me. I spoke to strokeline lady in Hobart re the problem as I see it. Apparently a person would need to be trained to take on such a group. I had formed a nice friendship with a lady during rehab time. Sadly she died 3 years ago after another massive stroke. Since then Diana and Simone at Strokeline have been my support  and then I joined Enableme. So much great support from people "who get it"

 Marcus what an amazing recovery you have made. You have enlightened me about aphasia. Thankyou. My big challenge is Dysphasia which has gone backwards. My neurologist is working hard to find out exactly what is happening. A nerve induction test week after next should provide the answer. 

A recent M.R.I revealed nothing new so of course I am both happy and relieved with that result. These 

conversations  are really worthwhile. Thankyou. Jenny