Hello,
I had a total laryngectomy 2 years ago next month. I can only communicate through use of written word, usually my iPad.
I am finding it becoming increasingly difficult in getting my thoughts, ideas, and words across to people. I write exactly verbatim what I mean, but people interpret and assume things differently just as they do with spoken communication. I don't know what else to do and have been finding myself becoming quite frustrated to the point my close friends and family tell me I am becoming short tempered. I am feeling they are putting it all on me but there is no way else for me to say anything. I am not in their shoes trying to understand me and they certainly cannot put themselves in mine to understand the trapped feelings. Does anyone else ever experience this issue? What do you do? Is there any type of specialist to speak to?

Thank you!
Silent Cindy

Cindy, I feel your frustration. There will be others who have had a laryngectomy but I just want to express solidarity. I meet a few people at a support group who have had the surgery. Some speak well with the speech device in their necks, some are hard to understand and one writes on a mini-whiteboard and has his wife speak for him. You can sense the frustration in people who were once very dynamic, articulate and talkative. You sound like that so I hope you get plenty of advice here on how to improve communication.

I feel for you also. I only have my teeth issues, trismus, and people ask what did I say, even worse, is asking a co-worker next to them, what did he say? Makes me mad. I have nothing else to offer with this, except when I go to the hospital I see quote a few people who have communication issues, and use sign language. Apparently quite a few, more than I thought who are not communicative challenged, take up this skill. I only say this with sincerity if it can help. I wish to pick up the skill myself to communicate with or for others in need.

Hi Cindy, oh I think I know where you are coming from.
Kris had both a laryngectomy and a total Glossectomy 32 months ago. He does have a TEP prosthesis but without a tongue it is difficult to understand him. Especially when his mouth is wet - as he has no tongue to sweep up the secretions to swallow. I understand most of what he says, but others have no clue. Lately he too has become short tempered and cross with me when I fail to understand immediately what he is trying to say. When he writes I can see/hear and feel the anger and frustration in his pen and on the paper!
Is there a reason why you do not have a TEP? As you do have a tongue this should work well for you. I envy other Laryngectomees and their quite clear speech.
I have just read your post to Kris. This is what he has written: " I can sympathise. Very hard trying to make a point, especially in a dispute when writing slows everything- and people can just ignore it anyway. Just adopt a teenagers attitude - no one understands me - they're all ......"
Honestly, it is very frustrating for me as his wife too. I do my very best to understand and feel quite hurt when he gets cross with me for not understanding. We just have to take a step back, keep calm and try again, slowly.
Kris was a journalist and had a great way with words. This is extremely frustrating for him. I just tell myself and him that this is so much better than the alternative of what would have happened if he had not had this surgery - and that was certain death within a short time period.
Not really much advice I know Cindy. But, you are not alone. Kris definitely gets you and how you are feeling.
Have you considered some counselling at all? Just an idea. This really is about accepting how you are now.
Oh , Kris uses Speakit on the IPad , pen and paper too when I fail to get it .
Tammy

Cindy,

It must be very frustrating for you. My experience is my son is hard of hearing and when he does not wear his hearing aids it is so maddening to have to repeat and repeat so I get it.

There is SO much advancement in technology every day, if I was you, I would be scouring around to find where the latest medical devices are being developed to improve synthetic speech. There must be numerous efforts out there doing this. See if you can get involved with one of their programs. Good luck.