WAGSofSCI-072 brooke and evan website

Hi WAGS! It's Brooke here 🙂

I know its been a long time since we have posted anything on this blog, and that's going to change. Elena and I are going to start posting more frequently on here and sharing our thoughts with you all because it's important during this time of turmoil in the world. Any form of connection and light is what is really needed right now, as we were sort of all forced into this new way of living overnight it seems. Also, we now have TIME to do this, and that in itself has caused me to re-examine my life as I knew it.. let's call it "P.I." or "Pre Isolation." A lot of us were prepared for what is happening right now, but a lot of us, were not ready for what was to come..

I have been reading opinions and hearing perspectives over social media lot lately from other WAGS of SCI.  I have found that our community as a whole are having very different responses to isolation, and what that truly means for the mind, body and soul.

There are women out there who have already been living an isolated life for years with their partners and this sudden lifestyle change hasn't presented any surprises to them as of yet. They feel comforted knowing that other women and couples like them are going to experience this way of living for themselves, and it makes them feel more understood and related to.

There are some women out there who are full time caregivers, and who have gone through hell and back to find that semi-balanced existence that only comes with years of trial and error. This period of time is presenting them with other challenges besides the care...

There are also some of us who are not used to providing care for their partners, or staying home. They are going through phases of overwhelm, struggle and frustration as they may or may not have been providing care for their partners themselves. I myself have gotten a lot of messages from women looking for advice on how to handle overwhelm, and feeling exhausted at this sudden change in their lives. I can relate to what they're feeling as I have felt this way many times.. like my mom always says "your cup is overflowing." You have too much on your plate that you aren't used to and it feels like you're treading water to keep from drowning. You've had something added to your "cup" of life, and its caused it to overflow in many unexpected ways. This doesn't just need to be physical. Cups overflow when you're experiencing more stress and anxiety from something life has presented you with that you're not ready to deal with. Yup.. I can definitely relate to that as that is how I felt before isolation in a way, but from different factors other than providing care.

As a woman who works from home, and cares for my C4 husband full time myself,  I must say that this isolation has not really changed that much about our relationship as it is. By this I mean the two of us being together 24/7.. this is what we are used to already. We have found a separate togetherness when we need it, all while staying close in case one of us needs the other. We have worked out the personality kinks, and gone though emotional ups and downs learning how to coexist relatively peacefully. We have our routine down to a science, and have designed our lives around what works for my husband and his needs, as well as my own. Of course we cant' go out to restaurants like we used to, or break up the day with appointments, but I have to say that this has presented me with more relaxation than I am normally used to. And I am liking it. I needed this.

Yesterday I was talking to my husband about how I actually have time to sit down and "chill" for once. It was weird at first..We actually have periods of our day now that aren't jam packed with scheduled rehab appointments, medical visits, equipment sessions.. and I can breathe now. My body needed this. My mind needed this. It hasn't had this sort of a break for 6 years since my husband was injured...

A lot of people would look at this statement and say, "break"? How can caring for a C4 Quadriplegic without any independence and high medical needs be a break? Because I've already gone though the overwhelm.. I've already gone through the frustration, and tears trying to find a smooth routine that works for us. I've gotten used to the care, and it took me about 2 years to train my mind and body to be ok with everything that goes along with it. I had to clear some things out, in order to allow the new parts of my life in.

I am not going to lie.. before this I was struggling to have some "space" in my day that wasn't taken up with "something" and it was very frustrating to me. I would finish the week and be so shocked as to how fast it had passed, and wished that I could slow it down by being less busy all the time. I had not wanted to live such a "linear" timed life, with a schedule and plans and obligations. I had wanted to live differently on purpose, but things weren't falling into place as easily as I had wanted in my mind.

In 2018 we went to Italy for 3 months in order to find that slower paced life, and live it well in order to take a drastic break from our "scheduled" life as we knew it back home. We noticed that without a real schedule, and without a packed day, life and time slowed down. We could actually smell the roses (and the wine and Taleggio) without having to rush off somewhere else. The days slowed down, the week ends didn't come as soon, and It was amazing. When we came back home, we both vowed to keep our life at a slower pace so we could really enjoy it more. Did that happen? No.

Appointments crept up on us, friends needs crept up on us, we had sh*t to do every single day again. "Western" life of constantly 'doing" came back into our existence as much as we tried to resist it. I would take some afternoons off for "me" time, but it was never long enough for an actual reset and change in programming. We had people to see, therapists to visit, insurance people to please AND fight tooth and nail with, wheelchairs to fix. It went on and on... and there was no end in sight. There was always a reason to keep running through life.

When the isolation period started, I wasn't used to just stopping. I wanted to keep going like the energizer bunny, because my body was still trained in this way from years of conditioning and treading water. I stopped myself and said to myself "wait a minute, we have been over this!!! You are not wanting to live like this anymore!!" But I couldn't stop cleaning, worrying about my partner and Covid-19, stressing, and really feeling the emotional energy of the world. I noticed this and literally had to tell my mind and body to calm down. I was playing into my old self, and buying into fear and anxiety as the norm again, when I had worked so hard to separate from that. It just goes to show you how habitual your mind and body is, and how stuck it is in what it has been trained to do.

Was it easy recognizing this and paying attention to each time I felt these feelings? No. Did I have side effects? Yes. Was it easy to just not do a thing except stare at my garden and not feel guilty? No! Its been just over a month and Im just starting to be able to be calm without having that "pull" of what I have been trained in: constantly going going going. Now is when the real work can start.

So what has this isolation period brought me besides more time? It's brought me a level of reflection into my own mind, and strong, scary realizations about "living" that has to change for me.  It's shown me that I still have a LOT of work to do with my thoughts...thoughts I was absolutely certain I had mastered before. It has shown me a new perspective about the world that I had wanted to see before, but couldn't as I was too caught up in running in the hamster wheel of life.

It's taught me a lot about the world in general, and our community of women as a whole. It has helped broaden my perspective, but also reinforced the fact that really feeling emotions that are unpleasant ARE necessary to growth and progress.

Change is not always fun, especially the REAL meaningful personal change, and as society in general we are used to unpleasantries that may come into our minds as just that - unpleasant. We strive not to feel "bad" or "unsettled"; We take pills for anxiety; we shame ourselves for having bad days and bad thoughts; We think that just because we struggle, it shouldn't be this hard; We are always trying to get ourselves OUT of a bad feeling.

But I ask you this: what if we were to re-examine those "bad" feelings as just "feelings" instead of associating negative connotations on them? What if those anxieties, fears, pits in our stomachs, tears and wild disturbances were there to show us what we have been avoiding all along? What if they're coming up now in order to show you that NOW is the time to take them on, observe them, and move through them? A feeling that comes to us is always unique to US.. based on our experiences, thoughts, and perspectives on the world. No one else can feel them like you, and no one else can learn from your own feelings more than you. So what are you being shown at this moment?

I have been given an opportunity lately to expand my perspectives on the world, with the intense realization that they are just that- my own perspectives. They're not the same as everyone else's, and no one can change them but me. I have been uncomfortable, yet comfortable, and have a new found hope for not just my own life, but for humanity. It's not always pretty, but then again, what is?

What are you learning about yourself and others during this time in the world? And how do you plan on expanding on that, while treating yourself with respect and love?

Thank you for reading.