Today, I managed to accomplish a few things, but not what I wanted. I felt OK this morning but had an energy dip today later along with some residual stomach stuff that’s been going around. However, I was still proud of myself of being able to work with a low energy equation. But sometimes, you get extra energy just by being. (Other people can also transmit a boost).
I know many post-transplant friends have told me that the experience changes you, but I had no idea how until recently. Not all the changes are painful; all are meaningful…
Yesterday, I was trying to tackle some SSD (Social Security Disability) paperwork. My initial application was complete, but they sent me some additional documents. One was a “Function Report”. It asked me to list to list all this information about daily activities & it was very detailed, so I tackled it first. It basically asks what daily life activities I can perform with or without assistance.
I know I had to be honest, but that honesty was painful because while I always try to remain positive there were a lot of areas where I had made adaptations already & really can’t make any additional ones. Having it all out on paper in it’s perceived “ugliness” hit me a bit harder than I anticipated. It was at first depressing.
But after I completed it, & slept on things, I started to be more mindful of every routine.
I can climb 12 stairs, I can do dishes, load the dishwasher, do my laundry, take out the garbage, drive. Everything comes with assistance these days. The oxygen helps me get it done.
This may not seem like much at first, but this is what I endeavor to do in one energy spurt each morning. The next spurt I do another group of things, like exercise, make small runs to the store, run errands. I also blog, do things like complete this type of paperwork, check on medical claims, & take care of medical tracking or appointments with another spurt.
I can also read, connect with others, try to plan fundraisers, watch a movie or TV show, socialize a little if I get another burst. Each day is different, even if it takes more work or feels like it takes more energy than it used to. I appreciate any or all of the accomplishments in a day.
Without the distractions of a “9-5”, I find I’m learning more & connecting with so many people from so many aspects of my life. I participate in great tweetchats on Twitter a time or two a week; talk with several other chronic illness, rare disease, & transplant community members through there & Facebook groups while I’m researching a bit if I don’t have a blog topic in mind. I also come on Facebook daily & get many messages of support & caring from not only friends & family back where I grew up; but people I haven’t seen in years but have fond memories of going to school with or going to college. Or even back to my swing music DJ dance days in New York or college radio days.
I get notes of appreciation & support from past volunteers & community members of my rare diseases, improv, comedy, & arts groups. In addition to well-wishes from past colleagues & mentors who are also friends.
All of this, I think I am noticing more now because I actually have freedom to engage. I enjoyed my work but there were aspects where I was so engrossed & “Type A”, or too busy commuting back & forth that I didn’t have as much time to dedicate to keeping in contact with people as much as I would have liked or should have been.
The last time just before I was extremely ill, I had an active second career as a volunteer which I enjoyed but found painful to give up even though I know I had to. Even though now a lot of my volunteering may be limited to some online participation, I still feel my voice & contributions are valuable to many & still has its place.
I am part of several new communities within the past few months & have made some interesting new friends through this blog but also through using social media as whole. This is great because while I always had support, I have even more now from people who can mentor me in not just preparing for transplant but also personal interests & I can still keep pace on professional interests & learning even though I am not out in the work force.
I also have at least more energy to sit home with my friends & watch a movie or a few shows & go out from time-to-time which is also important. So while I’ve slowed down, I appreciate people more (which I always have), but really now on a new level. It’s incredibly inspiring & humbling just to see how many lives I’ve touched just by the simple things I’ve tried to do & despite my imperfections. It makes me so emotive now, but in a good way.
I know this is all very touchy-feely, but it’s been an important lesson for me to re-learn & to notice. It’s such a clear example of how important a strong sense of connection, community, & friendship really are in hard times as well as good. Also that there can still be good in hard times. It also shows people that remember if someone reached out to them in the most simple & kind ways. It also proves how important it is to have people that you can be both your best & worst with & they will meet you where you are & care for you regardless.
Maybe I never really noticed this as much just because my family was raised to be kind as an intrinsic value even if they didn’t always outwardly express emotions openly with words.
If a neighbor needed a smile, one of my grandfathers would always bring them a box of chocolates or do a random act of kindness. If they were in trouble, both of my grandparents taught me the importance of being a good neighbor, rolling up their sleeves, & helping out in whatever way they could.
This is something I’ve always appreciated about my upbringing but has been passed down through generations of family members & down to me. But I only saw it’s true power manifest when I myself had to admit I needed a bit of help, cheerleading, & a leg up.
Maybe that’s why I gravitate towards some of the hobbies I do: improv, crafts, writing, volunteering, advocacy. All involve expressions of kindness, agreement, a way of reaching people or showing people you care very simply & earnestly. Then my other pastimes compliment that in various different ways – teaching, learning, observing, feeling ranges of emotion.
Who knows if this makes any sense. One thing I do know that in some diseases when it comes to the end-stage like I am in now, people may not only lose their independence with everyday tasks but also lose their ability to connect or do things that were once meaningful & important to them. I can’t imagine how painful that second loss must be. So while I may have days that are not-so-great, I still have meaningful connections & friendships to get me through it.
I know a lot of people rip on TedTalks, but this one by Starla Fitch was probably the one that triggered me to think about a few of these things & why they are important. It also helped me appreciate what was still here regardless of where I am – physically, geographically, or occupationally (amongst other things). I still have plenty of fulfillment & meaning in my life – even though on paper right now it says that time could be limited.