My Own Mind Alienated Me

Change is the only constant in life.” ~ Heraclitus

Change.  It happens every day to each and every one of us.  People we know change, situations change, life changes.  But what happens when, without warning, you are the one who changes?

In the fall of 2008, I was diagnosed with a chronic medical condition called Meniere’s Disease.  I could no longer perform at the job I loved, drive a vehicle, or make plans without planning to cancel them.  The diagnosis not only changed my life, it changed who I was.  It took a long time before I could accept the changes I needed to make in my life.  But it took longer to accept the changes that were happening inside of me.

My memory was something I had always prided myself in.  I could remember dates, phone numbers, names, places.  Imagine my horror in returning to work after several months, walking into the office and struggling to place a co-worker’s name.  It was humiliating.  I could no longer concentrate for longer than a few minutes and became easily distracted.  Where I once felt able to handle any conversation, I now struggled to keep it flowing.  I missed important appointments I’d noted by memory only to have it fail time and time again.  For the first time in my life, I had to use a scheduler.  I also needed to use reminder alarms to check the scheduler on a daily basis.

I looked in the mirror and recognised the face, but no longer knew that person.  The person who had been there was gone.  It felt like I had been shut out from my own self.  Why was this happening?  Why was my own mind alienating me?  The feelings of intense frustration, anger and helplessness were overwhelming.  It was difficult enough to live with other people looking at me differently, but to have my own consciousness do this to me?  It was the worst form of betrayal I had ever felt.

It wasn’t easy to get to know the new me.  In fact, I didn’t like her at all.  Mentally, I felt dumb and slow.  Emotionally, I was angry and bitter.  The new me was a very unhappy person.  I was miserable much of the time despite the brave face I put on.  I was also in denial that this was even happening.  I spent a good deal of time angry with myself.  Why couldn’t I remember like I used to?  Why did I need someone to explain things to me?  I asked myself again and again why I was making myself feel different.

It took me several years to realize the answer.  I was making myself feel different because I was different.  I had to accept that.  For my own sanity, I needed to accept that.  I was no longer the person I was before my illness.  It wasn’t my fault.  Why was I blaming myself for something I’d had no control over?

I needed to learn to love myself again, and I began to do just that.  Taking it moment by moment, I became mindful of my thoughts.  I ensured that my thoughts remained on a positive track and I would no longer do any mental or emotional self-harm.

I can now say I am in love with myself again.  There are still tough moments.   But it is, and always will be, a process.

I invite you to read more of my struggle with Meniere’s Disease in the post How Living With A Chronic Illness Improved My Life.

Carrie~Anne

84 thoughts on “My Own Mind Alienated Me

  1. It is a hard process to learn to accept that you will never be the person that you were. I have Fibromyalgia and the process of the disease leaves me unable to think clearly and I become forgetful. I can no longer physically or mentally do the job I once did and I have come to realize I will never be that person again. It is a long journey to learn how to be this new person and the parameters that you must live your life now. A great post and I congratulate you on finding a way to love yourself again.

      • I listen to music, I try to remember that I can make a difference in this life. I just have to keep going. I am not going to quit. All of that sounds great doesn’t it, but it takes a real desire to get up and deal. And there are days that I allow myself to just sleep, that is the hardest thing for me to do without feeling guilty, but if I keep going when I feel that exhausted it just takes me longer to recover.

      • I love the way you deal with your illness. I think it is so important to accept it. That doesn’t mean we have to give up, it just means we move forward.

        I’m glad that you have reached this place. It isn’t easy, and some people never get to the stage of acceptance. But once we reach it, it is a relief of sorts.

    • I can remember when Fibromyalgia was considered a “toss it in file 13” mental illness. When doctors did not know what was happening, they labeled it Fibromyalgia and refused to try to treat the symptoms. What a blessing you have a hearing these days.

    • I, too, love how you have come to navigate the challenges your body puts up, P. Fibro was one diagnosis I got over a dozen years back but I spurned it. Holistic management and treatments like acupuncture keep me above water. Our bodies are each unique. We have to listen to what ours is telling us. Music is powerful. You bring up the guilt I’ve considered writing about. I think women struggle with this more than men. Me – guilt about a lot of things. Like time to write, with my boy at home. Thanks so much for sharing of your struggles. I admire your resolve not to stay down.

      Xxx
      Diana

  2. Similar feelings occur to those of us who have led an active live and contributed at the high levels of organization. We look back with wonder at what was accomplished and compare it with our limitations at this age. But when we accept the fact that changes have occurred and there is no going back we can have happiness and fulfilment still. Your insightful contributions on your blog site should give you a feeling of fulfilment too.

  3. To lose who we were, through age or malady, is to experience a small death. There is grieving. It amazes me when I think of all the people who have risen again and gone forward with nobility. I imagine, in my mind, that this is when God looks down and says, “Now, that’s what I’m talking about!” I salute you, Carrie-Anne, for getting a step closer to Perfection.

    • Ginene, aye, there you go with your magic words. I’ve been thinking of you, btw. You spoke for me. =) I was going to say to Carrie-Anne how difficult it was to (first of all) recognize and accept the new her, her new normal, because the former was gone – and what is gone, but had died? But guess what, Carrie-Anne? We can’t have resurrection without death.

      • Oh, Diana, that is beautifully stated! I have never quite looked at it that way, but it is true! I am grateful for the changes that my illness has made in my life. Oh sure, there are so many things I miss doing, but for the first time in my life, I am able to sit back and enjoy the small things.

      • I was just thinking about how “fast” we move in our society. It seems that anyone who takes time to really enjoy living life is looked upon as “lazy” or unmotivated. It is sad that illness is often what it takes for us to realize how precious this life is and gives some of us the ability to slow down and really appreciate what we have, the time we have and the beauty that surrounds us.

      • Guilty as unwittingly charged. Years ago after crashing (all systems just kaput) from poor nutrition, stress, and the model Type A lifestyle, I noticed one day in the sunny west coast where I’d come for a change of scene the FLOWERS. Oh, the beauty of flowers I had never appreciated or had time for. My life had been full of more important things. Plans, demands, goals. The vibrant colors took my breath away. Took me years to understand why. Beauty is healing.

        I still struggle with my Type A self. My husband works hard and the rational part of me knows his naps are his uncomplicated way of listening to his body and clicking into the cycle of work and rest/break. But I struggle not to see it as laziness. It’s my issue bc he more than pulls his weight in and out of the house.

      • It’s a glorious resurrection and freedom from the death (as painful as it is) of the things we use for props to build our identity with. Capability, smarts, strength, etc. What happens when they go? We dig farther in the search for that sense of worth and value.

      • Oh you ladies are so on par!

        Yes, such a fast paced society we have in the Western Hemisphere. I am guilty of this as well. Not so much now, of course. But prior to MD (Meniere’s Disease), I was always go go go.

        Mindfulness is something that we should all practice daily. Take an extra moment to savour the flavour of that food you just placed in your mouth. Breathe a little deeper than normal. Allow your fingers to linger over an object for longer than needed.

        Feel the moment, and most especially, BE in the moment.

    • Ginene,

      Are you from Norway? Your name suggests so. ❤ However, most in Norway would spell it Janine.
      Your comment: To lose who we were, through age or malady, is to experience a small death. There is grieving. It amazes me when I think of all the people who have risen again and gone forward with nobility. I imagine, in my mind, that this is when God looks down and says, “Now, that’s what I’m talking about!” I salute you, Carrie-Anne, for getting a step closer to Perfection.

      You use the term "getting a step closer to perfection," a concept I have been criticized for holding. Race car drivers strive for the perfect win. Jockeys search for the perfect horse. Even football players want to perfect their plays, but most philosophers refuse to allow for perfection of character. Why is that? When one speaks of striving for perfection, slurs are hurled–slurs like "painted nails, flawless makeup and just the right speech."
      Those self-imposed judges miss the concept entirely. They actually describe a haughty snob, not someone like you are describing.
      I laud your insight. Thanks for being brave enough to suggest such a goal.

      • Hi Beth,
        Thank you for your interesting comment. No, I’m not from Norway, I’m in the U.S.A. The spelling of my name is really quite old-fashioned. My mother is French Canadian and her name is Ginette.
        When I used the term “getting a step closer to Perfection,” I actually meant getting a step closer to God. But, I agree with you, shouldn’t we all strive for perfection? We might reach and hold it just for a minute or perhaps we are perfect just the way we are. Anyone whom has criticized you for holding the concept of perfection is probably envious. And, that is really sad, isn’t it? Hold tight to your ideals! Think of all the beautiful works of art, fabulous music, amazing horse races etc. that would never have happened if the person creating them let some self-imposed judge tell them they shouldn’t try to reach their goal.

  4. Excellent post Carrie-Anne. It is so, so hard to have attained a level of understanding or physical ability only to lose it. A sort of Flowers for Algernon effect. I have had a number of life-threatenting illnesses that have left me barely able to walk. I used to do physical work (at times) for a living and was very attached if not proud. I took me years to just start to come to terms with it. At one point my ex-boss said to me, brutally honestly, “Do you really think you will ever go back to that job?” I always held out hope and from that point I realized the answer was No. I finally gave up my commercial driver’s liscence this year when I knew I would not pass the physical. I thought about trying to renew and realized I was only fooling myself. I might have been able to get by but to what purpose? I didn’t even trust my own reflexes anymore and would never forgive myself if I had an accident and hurt someone because of my stubborness and refusal to acknowledge my limitations.

    Your illness must be particulary difficult to adjust to. It would affect your life across all planes. You are very brave and wise to have the awareness to accept it and devise ways to cope with your current abilities. Powerful stuff. And I agree that trying to maintain a positive outlook is hard and yet the only way to proceed. So many people remain bitter for the rest of their lives and destroy the enjoyment they could be having.

    I had an odd experience at work when I had been demoted to administrative work while I dealt with my re-evaluation of life. There was fellow employee in his early 30’s (call him John – not his real name) with whom I had grown a strong friendship. We used to tease each other and I respected his attitude and abilities. I felt he also respected me. He was very professional and took a great deal of pride in his physical abilities. Then when I got ill, he became very negative towards me and would snipe with comments whenever he got a chance. I asked him numerous times, what I had done and what was causing this breakdown in the friendship,but he wouldn’t answer and just turned away. After I was forced to leave that job, I ran into another ex-coworker who worked in the same office, and we were having a beer and chatting. I asked him why John had become so negative towards me – as if nothing I did was good enough. He was surprised that I didn’t know. He explained that John was upset because I was ill. John had never had a physical ailment in his life and could not accept that my health had deteriorated due to no fault of my own. John blamed me for my problems because he was unable to accept that it could happen to him as well.

    It is difficult enough to deal with the problems themselves, let alone losing friemds because they can’t handle my issues. Have you had any problems like that Carrie-Anne? And if so, could you explain how you dealt with them?

    Thank you for sharing your expeiences Carrie-Anne – it has been very thought-provoking for me. And special thanks to Holistic Wayfarer for encouraging these discussions on her website.

    • I normally wait to allow the guest to respond first. But I had to pipe in what I saw in John before you went on to share the explanation for his behavior. Yes, fear. It’s a bell ringer anytime we exact any strong response from anyone (even positive ones, but that’s its own post). It most certainly wasn’t anything you’d done (in fact, it was what you couldn’t do, right?). It was projection. Of the things he clung to for dear life, the thing(s) he depended on (felt he needed) for his identity. You shook it up, and he couldn’t handle it.
      And you are so thoughtful to credit me for the round tables we get going here, Paul. Good questions you have asked. Thank you.

    • Diana is absolutely right. Fear. Fear of being in the same situation. Fear of not being able to handle it with the same dignity. Fear of the unknown.

      I’ve had many times when people in my life have blown off my symptoms. They tell me that I am exaggerating them. That it really isn’t as bad as I make it out to be. It hurts. These people who are suppose to care about you, suddenly turn on you.

      It took me a long time to realize that this wasn’t about me. It was about them. I had to learn to let go of several relationships because they were causing me more stress than I felt the relationship was worth.

      I can well imagine the struggles you’ve had, Paul. They sound quite similar to mine. It sounds to me as though you have come to terms with how your life is now. Learning to let go of parts of your life that you can no longer do is no easy task. I applaud you for being able to do so, and handle it with such grace and integrity.

      • Paul, I noticed that I got angry seeing my mother age. I realized it was hard to take. That emotion lent me the illusory feeling of strength and power – over against the helplessness I felt. Compassion and the gentle power of love meant I would have to enter her journey, her losses, changes. I hope this sheds some light on John’s response to you.

      • I have to admit that this is so true of my own journey with my mother’s mental illness and then physical illness. It terrified me that I would end up like her and I could not let go of the fear that she would “overwhelm” me as a person. I would lose myself in her illness. I now realize that it was just as much my own fear that I will end up like her. I wish I could have been more compassionate.

  5. Carrie–Anne,

    I was (am) ignorant of the syndrome you speak of, so I searched a medical dictionary.
    Did you mean
    http://medical-dictionary.thefreedictionary.com/Menieres+disease

    or possibly
    http://medical-dictionary.thefreedictionary.com/Meniere's+disease

    I can easily see how either of these could change a person forever.

    This might be one illustration about how or why people change. Sometimes after a spouse has died, a person may want to reconnect with a childhood friend with the hopes of marrying again. Sometimes that has proved disastrous because of changes each have made.

    It is good you can talk about this and know what is happening.

    • I see that you commented on my blog, Beth, but I will also reply here.

      Both descriptions fit, although the first one involves more detail.

      I tend to describe Meniere’s Disease as a disorder of the balance system. Each time a vertigo attack happens, it damages the balance system in the respective ear. For some, the damage caused by the vertigo can completely destroy the balance system in the ear. I have bilateral Meniere’s, meaning I have it in both ears.

      My right ear has had the most damage done. It has reached the ‘burn out’ stage, where the balance system is completely gone. So I have no balance function in my right ear. The benefit of this is I have no vertigo attacks from that ear. The downside is that I will never regain the balance function.

      My left ear has damage as well, but the balance function is still partially intact. I still do get vertigo attacks, but they aren’t to the extreme as they once were. In time, the vertigo attacks will increase in frequency and strength, and my left ear will reach the burn out stage as well.

      Currently, my biggest symptoms are tinnitus, hearing loss, and motion sickness. For when the tinnitus is very bad, I use a white noise machine to mask the ringing in my ears (the ringing is 24/7, but fluctuates depending on various factors). My hearing loss is not to the point where I need hearing aids, however, I should have them. I’ve learned to read lips, and manage okay with that. The motion sickness is constant. Worse when I leave the house as outside noises/movements are very distracting. I also have issues with depth perception, especially at night, and sometimes use a cane to get around.

      I tend to make light of my illness when talking to other people. I use humour as a way to manage some of the worst parts. When I have a fall I say, ‘The ground attacked me.’, or if I bump into a stationary object, ‘That _____ came out of no where!’ Humour helps 🙂

  6. Thank you for sharing your story. A quick peek at your blog and well, really, just looking at your blog title, reveals what an amazing person you are. Hugs from Thailand.

  7. Reblogged this on Carrie~Anne Foster and commented:

    I was recently invited to guest post on A Holistic Journey, a beautiful blog that covers topics ranging from parenting to humanity. An immense honour, as it is one of my favourite blogs.

    The following post is the first in a series of guest posts from writers who have struggled with the feeling of belonging.

    I hope you enjoy my contribution to The Holistic Journey.

    Much Love,

    C~A

  8. This was such a beautiful read and thanks for sharing, Carrie-Anne. It must be tough living with your illness but glad to see you’re getting on top of it. The minute we stop judging ourselves – our character, actions, emotions, thoughts – we become stronger. With positive thinking comes hope, and that means anything is possible.

    • I’m glad you enjoyed my story, Mabel. It is tough, but there are worse things to have to live with. I’m just grateful that I am still around to travel the path that has been laid before me.

      I love how you put this, “The minute we stop judging ourselves….we become stronger.” So well stated!

  9. Very powerful post. It spoke to me on a different level, and yet I could relate to the singular thread of transformation. And that is what I took away from this wonderful piece. I agree with what Paul and Diana said about fear – fear is the inner mechanism for so many of our actions. Anger is the chief activation / manifestation of fear. So I can only imagine having your life slowly ripped away like that and to sit with a new way of life (fear). What will happen to me? Why is this happening to me? How could my mind betray me? I know that those would be my questions, and pinning them all would be the fear of the unknown.

    I recall reading a book, where the author lost his job after a prestigious career. He raged against the world and specifically those at his former place of employment. He confided in a mentor that he would have a hard time finding a new job, or have to get a new career or all those things. Her reply was “and you couldn’t handle that, Jeff?” It was mind blowing. See, in his mind the problem was the situation which he couldn’t change. It was done. But it was in his response where he could find clarity and peace. The idea that we can’t handle it is frightening, and yet, we are very resilient, aren’t we? And I imagine it is in that vortex of acceptance on your part that has brought you a great measure of peace.

    Thank you for sharing this. I am a better person for reading it.

    Blessings,
    Paul

  10. I can totally related with what you are going through. I had to give my career because of Auto-immune diseases, hemiplegic migraines and severe degenerative disc disease. I still struggle with the loss of my work and everything associated with it. It is a very difficult journey, one that I would not wish on anyone. Change is hard, especially when it is not chosen, but forced upon us.

  11. It is so unfair when life stops us in our tracks and we realise that things will never be the same for us again. Once acceptance of that comes though, we can learn to live again and find ways to enjoy life within the constraints put upon us. It is so wonderful that now you can invest your energy into this acceptance and the peace this brings, no longer expending it on feeling hurt and angry. Maybe you needed to go through the anger first, it is, after all, a form of grief isn’t it? Grief for what you lost and for what you felt you would never have again. Part of the emotional healing process. Thank you for sharing your touching story here and for inspiring others who might be struggling with the same or similar challenges. Blessings to you Carrie-Anne. Sherri.

  12. It is like any devastating thing that happens to us; at first we cry then we have the choice to wallow or pull up our socks and strength and find a way to deal. I have suffered and still do, a chronic health issue, so I know exactly what you are saying. Thanks for sharing with us all. 🙂

    • D., I completely agree. We have little control over what happens, but we can control how we decide to handle it.

      I think it is important to wallow for a little while. Forcing oneself to get up and push through isn’t always the best option. Often times, it backfires and can cause more damage. This is often known as the denial stage of grief.

      D, do you find yourself moving back and forth between accepting your illness, and fighting it?

  13. I was diagnosed with “likely” Meniere’s Disease earlier this year. I say “likely” as the specialist told me that the only way to truly know if a person has (had) Meniere’s is via autopsy. So I am not eager to know definitively if I have it!
    It was curious as I had told my mother of the dizzy spells and she said her father had Meniere’s and it seemed like I had the same thing. I did not mention it to the specialist or the student registrar and let them draw their own conclusion. The vertigo and “dropping”, where I cannot stay upright, is difficult to deal with. During one bad episode last year, it took me three hours to get the two blocks back home. Every time I tried to stand I came crashing down again. I get dizzy from going from a squatted position to standing up. My head spins and I lose balance.
    For me, it’s just another condition I need to incorporate into my daily life.
    I was also fitted with a hearing aid this year as there is severe deafness in my left side. As it is only the one side, it is not thought to be environmental which would affect both ears.
    And I think this may help a little with the vertigo and Meniere’s.
    Great that you have learned to love yourself again.

    • Glenn, I thought someone who had been diagnosed with Meniere’s would find this post. I am sorry that you have to live with the condition.

      Yes, there is no test for Meniere’s. They diagnose by eliminating other similar diseases, and by having the 4 main symptoms. It can be hereditary, which sounds like it is in your case.

      I can well relate to the dropping. These are known as drop attacks. They hit suddenly, without warning. I have had a number of these and they are extremely scary.

      It is great to read that a hearing aid has helped you! That is very encouraging for me. I’ve not yet gone that route, due to the expense. But I do know that some people find relief from the tinnitus/vertigo/balance issues associated with MD.

      How do you find that you manage with MD? Are you still able to live a fairly normal life as you did pre MD?

      • Hi Carrie-Anne, I’ve been living with it for a while without knowing what it was. How I live with it is a tricky question as I have lived decades with, up until last year, undiagnosed BiPolar so what relates to what is a little blurred. Up until going on meds for BiPolar, the tinnitus, hearing loss and probably Meniere’s all went untreated. The dizzy spells now last mimutes rathet than hours, so that is a great improvement.

        I was fortunate that I got a government subsidy to cover the costs of the hearing aid.

        It makes a big difference – for the better.

        cheers, Glenn

  14. Thank you for this rich description of alienation. Few experience this to the degree that you have, but most of us know something of this, and fear (rightly) that this will be a journey for the great majority at some point in the future. It is good to have guides who know the terrain in our midst.

  15. When I developed epilepsy in my thirties I went through a similar process of grief, ending in acceptance. I’m one of the lucky ones because my fits are controlled by drugs but my memory will never be the same. I always joke that I never had a good memory in the first place but, for someone who loves words and language as much as I do, the problems I had (and have) remembering words, sometimes for even the most basic things was hard to take. Whether it has got better than it was or whether I’ve got better at coping with it I’m not sure. I still struggle with words but I’ve developed techniques to deal with it. Many of these involving writing things down. I guess these things make us stronger.

  16. I know you didn’t have a stroke, but it seems like there are similar symptoms. In my life I’ve always been horrified of having a stroke and losing my “me.” Your essay made me a little less afraid. Thank you.

  17. An awesome realization that does not come easy. Needs a lot of Will power. Inspirational. Just one thing! True that one should not accuse oneself for happenings beyond control but does that mean that all those who suffer setbacks due to their misjudgements or mistakes should continue to berate themselves forever? We learn from our mistakes and also, no one goes through life without —–??? Just some unrelated thoughts

  18. What you went through must have been very frightening. How great, though, that you were able to use mindfulness to get back to loving yourself. I guess that what you felt was a form of grief, and we need to allow ourselves to feel that before we can move on. Your story is a wonderful example of how to do this.

    • Yvonne, I apologize for the delayed response. I seem to be having some notification issues.

      You are spot on when you say what I felt was a form of grief. It was grief. Loss of a job, loss of my life as I knew it…I went through all five stages of grief (more on that in my post that I linked to).

      I’m fortunate enough to have come away a much stronger person. I’m very grateful for that.

      Thank you for your thoughts and again, I apologize for not responding sooner. xoxo

      • I’ve loved sensing you on solid ground, Carrie-Anne. I know, pun intended. And I know it’s still very hard. I also believe the hurdle through many challenges is a process, parts of which we have to revisit. But on the whole, your note of triumph rings sure and strong.

        Love and respect,
        Diana

  19. Pingback: My Own Mind Alienated Me - Carrie-Anne Foster

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