Sometimes you question whether all the advocating you are doing is helping? Are you actually making a difference? Are we somehow making our illness look easy? This is something many of us have been accused of. Is that why many, even those who know us question our diaganosis and at times actually state that they don’t believe we have it? Is that because we work so hard and fight so hard for every good day? Would it be more benificial if we all gave in and said ok, we will stop then, let the illness ravage us so that the disbelievers, can than stop because they will see us wallowing and sinking into the black hole that so many struggle to find their way out of. It’s something I’ve wrestled with.
But then something happens and makes me remember and realize why fighting and standing up using our voices, even though it takes such a toll on us, something happens and we know without a doubt we are doing exactly what we are meant to be doing.
Explaining this is difficult so first I have to go back a bit, many releationships not just of my own, but for most of us living with dementia have changed or disappeared. Some will tell you why, some will say they can’t bear to see you disappear before them and they want to remember you as you have always been. You see in marriages we stick by our partners through the rough and difficult times, or usually, many with Dementia find they are left to cope on their own.But in other relationships withing family units and within friendships those same rules don’t apply. Sad really when you get down to it. Sometimes I left to feel like maybe having to be on my own has somehow been a blessing in disquise because it has made me have to fight hard to stay standing because know ones coming to rescue me, knows there on a day to day basis to rely on, where otheres expect to rely on those in their immediate circle. Doesn’t mean I like or want to do this walk alone, just makes me fight harder/ Maybe? Or maybe those with others close by fight harder becasue they have a reason to not sure, I feel greatly mixed about that.
Others want you to believe the relationship has not changed when in fact, most of us living with dementia can go back to the time it did change, we may not remember all the pertinet events that lead to the change but remember the feeling and the knowing the moment it did. And others may think we don’t know but we do.
We are then left with the undaunting chore of trying to process the loss, while living with an illness that creates enough loss without adding those losses to it, but invetiably it is in fact what happens.
So we must decide to either crumble or we decide to let that decison be the person making it be theirs alone. Its called accepting and not having an expectation, when in fact if you were living with any other type of terminal illness you would be expected to have expectations of others. So we try our best to focus on what I call “the Wins”, focus on doing what we can to help others and have a positive impact on those living with the illness.
Sometimes you worry that people think you are arrogant or full of yourself because of the work you do so this of course causes us to sometimes question it all, and yet all you have ever really wanted is to make a difference for others so people don’t have to feel the way you felt when you were diagnosed. And then that thing happens that thing that says, to those who want to disbelief its ok, to those who need to walk away or have a reduced relationship its ok, we make it ok for others instead of them making it ok for us, but then that thing happens yup time to tell you what that is.
Then you are talking with someone who reminds you of whats really important so I am going to quote from my conversation last night when discussing how it feels at times ” Those who feel you are arrogant are not seeing clearly. You are anything but Arrogant so don’t listen because I would suggest those individuals are feeling some jealousy verses loads of joy for you. give your energy only to the positive people and the negative ones will step aside.”
I so appreciated and needed those words, which then carried me into today to meet with a lady who herself has been diagnosed, we sat at the park, she told me reading my book and meeting me saved her life and changed everything for her. We talked for hours I gave her literature on DAI, so she could get more support, it was uplifting for me and again that reminder why I must continue to fight to stay well living with my dementia, regardless of what others think, or somehow believe I should be. I have definetly changed, I am no longer who I was, I struggle for more than most see, but thats because they only see the parts that make it look easy they don’t see the hours and days, it takes and the exhaustion after, holding yourself upright for hours to manage part of a day. Coming back home I messaged this lady to let her know I enjoyed our visit today. The response I got again verifies to all who question if they should keep doing the advocating and speaking out for others, how truly important it is. ” Thank you so much, I’m so excited to know there are things I can do—People I can talk to__ you have opened up a whole new world to me and I am so grateful. Plus you are kind of a cool lady!
These are those things that happen, somehow when we need it most.. to be reminded, that we should be proud of the work we do and we should ‘nt let the nay sayers stop us from reaching out and helping others and making a difference in the way we can. We may not be able to do alot of things we once did, we may not do things the way we once did, but we do and should continue in ways that are meaningful to us and contributes to us having meaning and purpose in our lives again, and we should never ever apologize for it.