Tag Archive | CAPD

Being the “Healthy” One…

Is it a privilege or something of a minor burden? I know that question sounds VERY selfish… and it probably is, but I find that as the person who is considered healthy it crosses the mind. In the grand scheme of things I am VERY thankful that I am blessed with a healthy and balanced mind (and for the most part body and soul). I have never experienced the lows of true clinical depression or the roller coaster of bipolar. I admit to anxiety here and there, but I think that is honestly a part of the human condition. We get anxious, we fight through it. Sometimes we win and find coping strategies, sometimes it overtakes us and we need assistance. Like I mentioned in my therapy blog post previously, there is absolutely NO shame in that!

But… at the same time… you are the outsider looking in, the cheerleader with no power to change the process, the speed, the outcome. There is a feeling of absolute dependence from time to time, I find. I am dependent on Ken to follow through on his process, to embrace his changes in order to attain his healthy lifestyle. I am relegated to the sidelines often when he comes home with a new strategy that only he can accomplish.

Yet, at the same time I am instrumental to his process. I am there to remind him, to support him, to pick up the pieces when something doesn’t work or he finds the burden of daily responsibilities too heavy in tandem with these new skills he so desperately needs and wants.

There is a weird experience of being silenced and yet heard at the same time. I can speak and it is a toss up as to whether or not my words will reach him at times, not by choice but a combination of his own existing issues (like the hearing disorder) and a lack of skills to process my ideas and my speed (and yes, I am well aware that I am a max level multi tasker with a high level of self motivation and perfectionism…). Sometimes it is my suggestion that is the solution, sometimes it is my confusion that exposes an issue… But at the same time, my methods, my “ways” aren’t heard or can’t be assimilated.

I know I have had my moments where I have wondered, is it so horrible, having the support… therapists, psychiatrist, doctor, people asking how you are (and sometimes even sitting long enough for it to be more than simple courtesy). Having a team and a network of people to all want you to be better, worried about you, working with you?

And then… I blink… and I remember the fear we had when Ken admitted those horrible thoughts were back. That he had plans in his head with manageable steps that would lead to me no longer having my family intact. That those ideas and such will never quite fade away. Where I have momentary doubt and frustrations he has the inability to truly walk away from it. Medication and vitamins and therapy, a lifetime of having to consciously change patterns that are easy (or easier) to ones that are safe or healthy… and all of a sudden I am reminded that maybe I should just look to my own support group instead.

And that is what I think is crucial for the one who is “healthy”. You may not have a team of medical professionals but you CAN have the ear of a friend. It is not wrong or bad or even embarrassing to admit to a good friend that the responsibilities you face weigh heavily. Or admit even to the person who is struggling through mental illness that you have fears and concerns. Or maybe visit a therapist to unload (We have gone a few sessions as a couple. It is amazing) It is hard to celebrate the victories and progression if you do not face the uncertainty and the concern.

So the benefits, when you are not sleep deprived, worried about your family and feeling guilty about not seeing how ill he really was sooner (yup still dealing with that one, even though Ken AND his therapist say that is not on me. I just love him so much and it feels like I let him down by not noticing sooner… and then he reminds me that his like max skills as deceiving even himself subconsciously when in the throes of depression), are amazing when you are the healthy one… YOU get to be there as they get better and better and reap the benefits of that. YOU are their main support and that means so much to you both. YOU are (apparently) an inspiration to him and (sometimes) others… or at least so you are told. And most of all, YOU are not chained to a disorder that could haunt you for the rest of your life. Instead you are instrumental in helping someone else break free as much as they can.

My experiences have led me to realize that those moments of “woe is me” and “why am I having to always be the healthy one” are crucial in that they remind me that I am human. I can have those down times, they are ok, they are not horribly selfish and meaningless. Rather, it is part and parcel of dealing with something so life changing and, hopefully in the end, life improving. I am not guilty of horrible things, rather I am working through my own process of healing, because in the end I was hurting too. Just my hurt is in turn healed as Ken heals himself.

So, once again… for those who are seeking help… we salute you… ok we send out tons of hugs. (I am not much of a saluter)… you are not alone, you have us in your corner… and for those of you who are supporting those brave and somewhat broken souls… well you aren’t alone either. Our shoulders are here, our ears open and hugs are always available! NO ONE needs to suffer alone! We LOVE YOU!IMAG2448

When One Diagnosis Leads to Another…

When we are discussing Ken’s diagnosis of Clinical Depression it is no longer possible to do so as a stand alone issue. This seems to be a common thing I have found when I talk to other people suffering (and healing) from a mental disorder, the combination of multiple diagnosis. Often you hear about depression with anxiety, or a phobia… possibly the underlying diagnosis is the lead in to the depressive tendencies.

For Ken we have also had to learn how to deal with a rather interesting hearing disability known as – Central Auditory Processing Disorder, or CAPD. I know, not a commonly known thing. In fact, I am still learning about it and I do believe so is Ken. BUT it has answered some questions as to behaviour and issues in conversation and public settings Ken has had. Let me share the noticeable symptoms in adults as is found in the Wikipedia article Ken found me (if you wish to take a look at this highly technical article from the start go for it); adults with this disability/disorder tend to:

  • talk louder than necessary
  • have trouble remembering a list or sequence
  • often needs words or sentences repeated
  • have poor ability to memorize information learned by listening
  • interprets words too literally
  • need assistance hearing clearly in noisy environments
  • rely on accommodation and modification strategies
  • find or request a quiet work space away from others
  • request written material when attending oral presentations
  • asks for directions to be given one step at a time

Now for anyone who knows Ken well as you read this list light bulbs should be blinking on all over the place. Especially if you have ever rattled off a number for him to input in a computer or phone… yah not happening. That really is the sign of a spot on diagnosis… do one or two of the items on this list apply to you… NO pretty much ALL of them do.

I think before I discuss a few of the symptoms Ken has and how they affect everyone I will try and explain what CAPD is… Ken found me a couple websites (beyond Wikipedia) that do good job of talking you through it. First off a bit of an explanation as to how this disorder works with the ear and hearing explicitly:

When a person has central auditory processing disorder (CAPD), the part of the brain that translates what the ear delivers does not function properly. The person with CAPD can hear sounds, but how the brain translates those sound is disrupted, and the end result is a garbled message. (EXCERPT FROM)

So basically your actual hearing is not impaired, there is no hearing loss per say. Sounds are normal volume and clarity in that respect, the problem is in the processing and the brain. So when you hold a discussion with someone with CAPD they are hearing your words, but once they go to sort out the conversation and their response to it, that is where the problems occur. This is distinctly different from the more easily diagnosed deafness or hearing impairment that we are all more familiar with. Another way to think of it is like a short circuit (NOT MY ANALOGY). The information comes in but is not making it to the correct destination in the right order or as a complete and clear message.

Ken has always been unable to spend a lengthy time in crowds. People always joke that if there is a comfy couch you will find him, halfway through the night, asleep on it. Well, this explains that a little. What most interpret as anti social introvert (now don’t get me wrong, he is that as well to a degree) was really a survival mechanism for when he simply could not handle the constant hard work that participating in conversations in crowded and loud room requires of him. The average adult is quite adept at filling in blanks in noisy situations, carrying on conversations with distractions and generally filtering out nonsense and unneeded stimulus. What CAPD is (at least for Ken) is where the brain simply cannot handle all of that stimuli in an organized manner. Often multiple conversations in a room (even if you are only a part of one) hold too much distraction to keep sentences organized and recognized as coming from a specific conversationalist. That is just an obvious example of course.

I have actually discussed the interpretation of people’s words issue. Ken will often lean heavily on semantics. This makes more sense (and honestly sometimes it is just to tick me off…) when you think about how as he is listening to say a procedure or some sort of directive he is not processing 100% of it. To make up for this he needs total clarity on what does make it through. Like a radio cutting out, you try your hardest to figure out what is coming through and extrapolate to create a complete series of steps. Ken is constantly dealing with his brain recreating the cutting out radio. Of course, to deal with this necessity he often jokingly brings up semantics and plays around with being a stickler for over detail. I personally feel this is often an attempt to soften, for the rest of us, the way Ken has to deal with conversations. It is not like he is completely unaware as to how complicated and frustrating it can be to be asked for greater and greater detail when all you want to do is say – JUST GO DO IT ALREADY.

Now the trick of this disorder is that it is hard to diagnose, people who have it tend to compensate for it, some better than others. Ken’s depression really put a damper on that. With anti social behaviour enhanced and as he phrases it his “Give a F” (you can fill in the word there I am sure) very low… well the depression lessened the need or wish of his brain to create a bridge across these difficulties. When you are not in a good mind set introspectively it often quickly and drastically increases and additional effort you need to make to sort out the externals. This is rather apparent when you speak to Ken on many topics. All this is bundled in with a genius IQ (I kid you not, tested and everything… this is one girl who will NEVER take an IQ test… no need for that humiliation) and creates and external personality that seems ill equipped for many of the situations that we “normal” (I hate that word… maybe average?) people find so simple – crowds, rattled off telephone numbers, verbally given steps or stages for tasks… these all become mountains instead of mole hills.

The whole family has learned (even before we knew we needed to) to adapt to how Ken hears us. Now don’t get me wrong, it can be utterly FRUSTRATING to tell him something on the fly only to have him look at you blankly and say he got nothing of that, could you please repeat it. At which point you inevitably cannot remember A WORD YOU SAID! BUT it has slowed our speech down at times, words are better enunciated. Patience is a virtue that is slowly being improved upon.

Our family has become a family of lists and notes. When one person cannot remember offhand a list of anything we all have tended to finding a paper and pencil. The twins take great joy in leaving requests on the chalkboard, a piece of paper, the boogie board (wouldn’t I love a few more of those!!)… often meant just to be humorous it is a visual reminder, an opportunity for the kids to practice spelling and writing skills AND a bit of respite for Ken who then does not have to attempt to remember yet another spoken item.

There is something to be said for compromise and adaptation. And really with any disability that so acutely affects any of your 5 senses it is inevitable. I am proud of our adaptation and our work to be a home of openness and all encompassing compassion and love. So I will end this blog entry as I have all the ones regarding our journey and say YOU, you that are reading this are ALSO welcome in our home and in our hearts… You are NOT alone, we love you and we are celebrating your successes as you take your journey to become a healthy individual!IMAG0580