Sorry, I guess I haven’t talked enough about change.
I’m still thinking a lot about coping with change – particularly how Mary Elizabeth’s post-stroke capabilities have been hard for me to accept, but somehow seem to be easier for everybody else to adjust to.
I’ve talked about the feelings of loss and mourning that I experience when I encounter vestiges of the “old” Mary Elizabeth. I maybe disrespectfully depicted a group of women at a support group who denied any experience with that feeling of grief, and stood steadfastly by their post-stroke husbands’ identities.
I perhaps arrogantly assumed that I was more in touch with my feelings (being so darned introspective) than the group and that just because I had figured out a way to articulate why I felt so sad, that they somehow hadn’t gotten there yet.
But the reality is of course that we’re all on different roads and at different stages in our journeys and I know that looking for comparisons can be a big mistake.
I don’t think that anybody would argue that a person is way more than the sum of his or her disabilities. But as a caregiver, I worry that sometimes all I see are Mary Elizabeth’s disabilities – and that I’m not looking beyond all that to find her core – her soul – which bound me to her in the first place, and which kept me going through the long months of her hospitalization and challenging recovery since then.
I confess to sometimes feeling a little bewildered when people comment on Mary Elizabeth’s progress and how she is. Their comments are always positive, identifying areas where she’s progressed (and there are plenty) and expressing great hope for future improvement. To me (the bad, dark me) it feels a little like the emperor’s new clothes. Does nobody see how hard it is for her to walk? Can nobody hear how impaired her speech is? Is her twisted hand and misaligned vision invisible to everybody?
Of course not, but people what are people going to say? “Oh Scott, how sad it is that Mary Elizabeth has been so stricken? That she will probably never work again? That she’ll be dependent on others for the rest of her life?” Never! And honestly if anybody said any of those things to me, I’d probably start to cry.
I think that people are looking beyond the disabilities and trying to be positive, glass-half-full types and just being nice.
But it leaves me feeling a little like I’m the glass-half-empty guy, focusing instead on the negative and how wrong everything is. And perhaps I am that person – at least sometimes.
But I guess what I really am is a man on a journey, trying to balance the needs of a recovering spouse, 3 school-age children, full-time job and busy home life. It’s hard enough to do just one of those things and as chief bottle-washer, I’ve got my hands full with all of them, while trying to avoid the pitfalls of self-pity and negativity.
So, I take a deep breath and try to keep moving forward – feeling so, so thankful for all of you positive thinkers out there who keep making supportive, hopeful and beautiful observations. I know you recognize the challenges just as much as I do, but you look beyond them, and I appreciate it from the bottom of my heart.
Moved in Sundry Places 
Oh Scott, not bad or dark! Just human, like all of us. Humanly wanting what was; humanly getting worn out with caretaking; humanly getting caught up in limitations as well as celebrating improvements. I am so glad you voice this sort of thing here.
It’s natural to have bad days along with the good ones. Give yourself permission to grieve, to lament what was lost, to acknowledge what’s really there and what’s really not and how hard it all is. The cross was really heavy, scratchy, humiliating, and painful. It was also the way Jesus decided to show his love for his people.
A little after Matthew 16:24, “Whoever wants to be my disciple must deny himself, take up his cross and follow me,” it says “…the Son of Man will reward each person according to what they have done.” You are daily picking up your cross (as is, by the way, Mary Elizabeth), and you will certainly have your reward, good and faithful servant!
Persevere!
~Maria Elliott
Scott, I don’t know if this will help, but a long time ago I got some coaching from a counselor who – while studying to be a Buddhist monk – had spent a number of years in the desert by himself, meditating and trying to come to an understanding of what it meant to be human. He eventually came out having realized that being a monk was not the life that he wanted. But, he taught me an invaluable lesson about coping with loss, sadness and tragedy that – when I chose to remember and practice it, has been invaluable. He taught me that when something “bad” happens, or negative feelings about life begin to rise up in me, instead of fighting the feelings, to simply “be” with whatever I’m feeling; to breathe deeply and allow the feelings to be there. Again, don’t fight the feelings; don’t try to suppress the feelings; and certainly don’t try to intellectualize them away, just turn off the “thinking” brain and turn on the “physical” brain – notice what’s going on with my body, keep breathing deeply and allow the feelings to wash through me. I find practicing this very helpful to me, especially when I allow my thoughts about the difficulties I have in life to race away with my mind; I find that the more I try to fight or suppress the feelings, the more incapacitated by them I become. Instead, I consciously remind myself to “breathe, allow and notice.” I hope this advice is helpful.
Scot, anything I could say would be semantics. The feelings you have are yours and yours alone, regardless of how many other people are in a similar position. They are not YOU. One thing, however, that caught my eye was that at that moment you were talking about yourself as a caregiver. If ever you get a moment where you do not see yourself as such, you might see Mary Elizabeth differently for that moment. My prayers are with you all