So I did it. I made a decision to make life a bit simpler this Christmas. I don't know what happened, but last night, I was sitting on the couch, not feeling quite up to snuff and had this wave of overwhelmed crash in to me. Not over. In. I looked around at the Christmas decorations and felt..nothing. Not warm, not inspired...not in the mood at all. Again. As a former Miss Christmas...this was not a good sign.
Perhaps it wasn't the best time to make decisions like this, but this morning, I feel pretty good about it.
Bottom line, no matter how much I try to fake it, I still am not 100%. I am fine to do a realistic amount of activity plus normal day to day stuff, but add on extras and the telltale signs that I am pushing start to appear. Honestly, I am not looking for 100% and am fully aware that, for me, that may never happen again. In terms of Old Rachel. New Rachel (NR) has an adjusted 100% (which, my husband tells me, can still kick a "healthy" person's ass!). In fact, NR has yet to reach 100%. I was close, but got knocked back a bit. Even as I sit here today, I am far better off than I was just 8 months ago. I am learning the limits. The hardest part is knowing that there are some who don't understand, or I feel, judge me on those limits.
My Gram is 83 and healthy. Physically. Not even a cane. However, she has dementia. Badly. My mom recently asked me if I would rather grow old and be confined to a wheelchair or be, for the most part, blissfully (we assume) unaware, but have a healthy body.
It is terribly painful for me to sit with my Gram, my rock, my first experience with unconditional love, and watch her slowly slip away from us. I often sit and watch her to see how and if she is engaging and wonder what is really going through her mind. I know that she is aware, at times that she is, as she puts it, "pazzo" (Italian, for "crazy"). I don't think she is. But she certainly feels it. How could she not. I can only imagine the confusion from moment to moment. All I can hope for is that wherever her mind takes her, it is a happy time and place for her. Sometimes, I wish she could stay in whatever world that is, because it is hard to see the reality wash over her face each time she returns to today's moment. And she says, "Oh Rach! I am pazzo!" And I tell her, "You sure are. But I promise not to tell anyone. Because they already know." And then she laughs. I love the sound of her laugh.
But, is that pain really only pain to those of us watching the Gram, Mom, Pauline we all knew slip away? I know that every holiday meal, I think of her. And how she would buzz around and seem to have it all put together...without a drop of sweat or an ounce of frustration or panic. Every project I do, I think of her and who she used to be. Yes, we would all love for Gram to be with us the way we each individually remember her. But what would she want? Is she even aware? Is she happy? Or is she plagued with many moments of being lost? Does she remember those moments long? I would hug every single moment like that away. If only.
So. The wheelchair option. That one is not too hard for me to imagine. For one, I have been there before. It's not easy. Before RA, I worried about being a burden on my husband in our later years. I had three knee surgeries and was told I was looking at a replacement by the time I was 40. Meaning that when I was really old, I would really struggle to get around. The thought of someones life being altered and burdened because of me is a solid fear I have. I want to make other's lives easy. I want to help where I can. I don't want to be a burden. I hate that there are things I can't do on my own. And believe me, I am a fairly determined person. I could always get it done. And as much as on my own as I could. Now, the steps required to vacuum a room are frustrating to me. Fixing things are more difficult because I have to have someone there to run and get the materials and tools needed to do the job. I HATE that. And though I am thankful for each day that I am allowed to open my eyes and live that day, there is no telling how I will be able to move through that day. These days, I have adjusted to this, unknown. In the past, notsomuch!
There is a lot of pride to be swallowed when you have any kind of illness, disease, etc. I know that I am not alone in this. For some, it may be easier than others. Not for me. The other day , I saw something that someone had posted. It went something like, "Telling me that I shouldn't be [unhappy, sad, etc] because someone else has it worse is like telling someone they shouldn't be happy because someone else is happier." Wow. My daily mantra for years has been that someone, somewhere has it worse. Be thankful. And I truly believe that. What I understood when I read that was that I haven't been completely fair to myself. Although I don't condone wallowing in self-pity, I think it is unfair to expect anyone to just brush over something that has been life altering in so many ways like it never happened. I have been doing this to myself for years now. I hide when I am feeling bad. I don't always tell when I have been to the ER. When breathing becomes more of a struggle, I struggle with myself and wonder at what point do I call? Then I worry that I may be bothering someone if I do.(The whole time not seeing that there is a reason and history that proves I truly am not bothering anyone) I move through the motions, even when they are agonizing. Sometimes pushing too hard and paying for it later. I sometimes cry at night, because I am so disgusted with what has happened. And then I get mad at myself for crying. I get mad at myself a lot.
Frustration is a word that is probably overused by me. But I don't know a better one. There is frustration in so many areas. With how I feel. What I want to do and can't. What I want to say. But can't. Or won't. With what others say. Or don't. With writing. Or typing. With the lack of understanding. And lack of ability to educate. Ignorance. Expectations. Frustration with trying to keep up. With myself and my head. Pesky head.
Overwhelmed is another overused. I am constantly overwhelmed. In both good and bad ways. I am often overwhelmed with frustrations (see above). And then I am overwhelmed with compassion, love and understanding. Most often from those who have always been there to give it and some who just
show up out of nowhere, offering so much of it. Crazy enough, I squirm with discomfort when I am offered such gifts. I struggle to think that I am at all deserving.
I hate the "would you rather" questions. Truth is, I don't know. I can only imagine that Gram would love to be with us the way we wish she were. And if it meant being in a wheelchair, she may say, "Sign me up, Ra Ra!". Who knows? I sure as heck don't. What I do know is that everything happens for a reason. There is a reason, after nor really being on facebook for some time, I logged on that day to see that quote. This is hard, for me. I have had countless professionals say things to me lately. Small comments, that I brushed off. Things like, "[RA] is a tough disease". She was the cardiologist's nurse who put it together after taking down the list of drugs I was on. It wasn't just what she said, it was how she said it and the way she paused what she was doing to make eye contact with me. I could look anywhere but at her. Because I would cry. I wanted to cry and admit to her, and myself that it was. But I didn't. I have heard that I am way too hard on myself and that it is OK to accept or ask for help. Even in the rheumatologist's office. I JUST learned that when they are squeezing my joints, I am supposed to be telling her that it hurts. In the freaking rheumatologists office!! Last visit she realized because I couldn't talk through the pain. I lost all concentration. Usually, I brace myself and hold my breath and tell her "it's tender". I don't have to be tough there, but I still try. Because, even there, I feel like I am weak if I admit to pain. Even though she can feel it and see it. She wants me to tell her and I can't.
Another truth. I am angry. And terribly disappointed. I have been let down. Despite everything that has or has not been going on in my little corner of the world, I have been where I needed to be. To the best of my ability and sometimes beyond that. What I am angry about is the possibility that because I can no longer offer to the extent I used to, I am not as valuable to some. Or the idea that I may be thought of as weak and not handling this whole chapter in my life well. And I know the answer to that is then they should be of no concern to me then. I know this, but it still hurts. Because I never want to believe the worst. In anyone. I may have to. Just another test in strength, from life, I am sure. A test I will pass with flying colors. Already have. Because I have always remained true to who I am. And will always try my very best to keep on doing so.
So. Would I trade all this to be blissfully unaware? Again. I cannot say. I want to know my family. I want to be with my family. If that means, someday, possibly from a wheelchair. Well. So be it. If it means that I will be there, but...maybe just not as all my loved ones wish me to be...so be that too. For now, I have the blessings to be there where I am truly needed. In both ways. With my family. Creating memories so grand it will never matter whether it is my mind or body that fail me. Gram dances to polkas around the room and whips up the best meals, in my mind...and will forever. Just as my Granddad (who has been passed for years) came home the other day and told Gram he wanted to go to the museum. In her mind.
No cards. No cookies. No parties. No pressure. Back to the basics. Back to what Christmas is all about. Presents! No. Just kidding. :0)