What I Need

So often we don’t know how to offer support to someone who has a disability or an illness.  Do we reach out to them, or do we wait for them to reach out to us?   In fact, in the past couple weeks, I’ve had two friends to whom I asked that very question.  One of my friends said she needed me to call her, and so I said I’d check in every few days.  If she feels well enough to talk, she answers.  If not, I’ve been assured she will call when she’s ready.  This works for us, and I know I’m still valued by her as a friend because that’s been made clear.  My other friend made a comment about wishing she had more support.  I wondered  what that meant for a couple weeks, until I finally asked.  Texts and messages are good for her.  While my disability makes it hard to text, I can certainly send her short messages. We have to be willing to set aside our pondering about what to do so we can arrive at a place where we discover and act on the support that is needed.  It’s hard to know what role to play in a support system, but it’s really up to us to ask.

For me, I like it both ways.  I will reach out to people when I need help, but I would also love it if others reached out to me.  And here’s the thing.  I always need help.

There are a couple of friends I can always rely on when we go out together.  “What time should I swing by and pick you up?”  I genuinely appreciate that because it relieves me of an enormous amount of stress regarding my transportation.  Driving anywhere is very painful, and it’s really nice to know I have that small handful of people who don’t think twice about offering to pick me up and bring me home.

But I do still need help, and I can’t rely on my parents to do everything for me.  They live an hour away and are always offering to help when they’re here.  However, I’d rather not have to wait until my parents drive up, whenever that might be, in order to take the garbage out or have dog food and cat litter bags brought in from the car.  I’ve heard that there’s some sort of app set up so that you can make a list of things you need help with, you share it with your friends and family, and then they check off what they will help you do.  I should probably figure that out because I do need help with the basics.  I’m slightly embarrassed to say that until my friend and her friend came over at the beginning of September to do a seriously thorough cleaning of my main floor and basement, my floors hadn’t been mopped and my house hadn’t been dusted for at least a year.  Having checked with my health insurance about home care services that offer assistance in this area, that was the ONLY home care service they don’t cover.  Just my luck!  So I have to find it elsewhere.

Here are the things I would write on that list to share with family and friends, the daily tasks that I can’t do myself:

*taking out the garbage once every 2 weeks (which is heavier than normal due to the used cat litter)

*carrying 20-30 pound bags of dog and cat supplies down to my basement…timing varies

*walking my two precious dogs 1-2 times a week

*basic cleaning:  dusting, cleaning the sinks and the tub, mopping the floor, vacuuming…once every 3-4 weeks

*help with organizing: putting items away, bringing out winter gear and putting away summer, gathering items I don’t use for donations, cleaning the floor of my one small closet 1 time a month

*cooking:  having even 1 vegan and gluten free meal a week prepared by someone else would be amazing.  It is so incredibly painful to stand in the kitchen, and the recovery time from cooking is lengthy.

*miscellaneous gardening opportunities:  especially cleaning out the hostas and bagging the dead branches in the fall or spring, fixing the bricks around the side of my house that are barely keeping the rocks from flowing onto my grass, digging holes for planting in the spring (2 of these items are ready to be done if there are any takers out there)

*random things around the house:  changing the sheets on the bed, changing the sheets on the couches, shaking out the rugs…1 time a month

*rides to my physical therapist in Excelsior:  1-2 times a month based on how she thinks I’m doing

*visits:  While each of these things do involve visiting, it’s also nice sometimes to just have someone stop over for an hour to sit together, sip a warm cup of tea and spend time with each other.

It would be so great to have a team of people to help with these things most people take for granted.  Before my diagnosis, I wouldn’t think twice about doing these chores, but now it’s physically painful and usually impossible to do any of them.  It’s a full-time job and then some, living with Cervical Dystonia.  I’ve written about that before and don’t need to re-visit the topic here.  It certainly takes a village, and I’m grateful for the villagers I have in my life so far.  But I don’t want to have to rely on my parents for everything, not only because they live an hour away, but also because I want them to be able to visit just for the sake of visiting.   I’ve reached out to my church to see if there are any volunteers and now all of you know what I need;  it would be a wonderful blessing to have my village expanded.

My Hopes:  For me, I hope to ask others in pain exactly how I can support them.  Although I’m limited in what I can do because of my health, that doesn’t mean I can’t be there for them.  My hope for you is the same, that you will ask the people suffering in your life what they need in order to feel supported.  And then follow through on at least one of those things.  Or talk to multiple family members and mutual friends to see how you can set up a circle of support for that person in your life who really does need help, because they physically can’t do normal daily tasks for themselves.  That’s one of the many difficult things about being single.  I yearn for the day when I have a significant other whom I can count on to be here for me and with me, in addition to those in my circle of support.  For those who have been a part of this circle and for those who have yet to join, I am eternally grateful.


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