My friends would actually come visit me, or even email me. Ten of them would send me $20 a month so that I could pay my electric and wifi, and buy pet food, which are the only financial needs I have. My friends would take some time to educate themselves on my condition, by opening, reading and commenting on the multiple links I share on facebook. Someone would bring their tractor around to mow my already foot-tall grass. It would be nice for someone to offer to mop my kitchen floor, and clean the bathroom.
Those are my most crippling needs right now, and I have always kept a meticulous house, so it’s frustrating to look around and see it the way it is. On a positive note, I did manage to get the dishes done today. But that’s all I had the energy to do.
I would love to have a friend offer to help me clean the house, drive me to my weekly appointments for treatment, to offer a hand with my two disabled sons, helping them to organize their rooms, apply for services, etc., help with organizing paper work. (There is plenty with 2 sons with a progressive disease)! I would love it, if friends were just present in the moments of life.
Calling me at the end of the month and asking if I have any appointments or important events the next month. Then offering to pick me up and drive me there to my appointment or take me grocery shopping etc. I find that when I have to drive myself everywhere I get extra frustrated and tired before I even pay my copay. I had to go to the ER the other night and spent 2 hours in the ER and then 2 hrs driving/waiting to get the prescription filled because my normal pharmacy was not open after hours. I was so tired when I got home that I had to take work off the next day.
Asking me what tasks I’m feeling overwhelmed by and stopping by to do them regularly (e.g.: cleaning gutters, mowing grass, helping me plant my vegetable garden, house cleaning, washing my car… the list goes on and on!)
Offering to pick up groceries or other items when they are going to the store. (My precious neighbor does this almost every week!)
Gifts of money/pay a bill(s)/gift cards. Tell me (text, email, snail mail, in person) they remember me and/or pray for me.
The essence of all of it is: DON’T FORGET ABOUT ME.
Come over to my house to visit me about once a month, send me nice stickers on Facebook, send me snail mail and postcards, and go do outdoor activities with me like safe hiking and walking. Sit with me in the IV room while I get my IVs done. Stand up for me if I’m getting mistreated in public.
I would like if someone just spent time with me. Hanging in my pretty boring life with me. Tell me all the great things going on for them and just be normal for a while. No talk of sickness, just fun.
I’ve seen support in numerous ways. Sometimes it’s a friend picking up groceries, or making a meal. For friends that are already super busy with their own lives even a “how are you?” text message is nice.
This friend would be supportive in the following ways:
1. He/she would just simply listen. Listen to all that I need to cry about, feel angry about, or even listening about those areas of physical and mental health that are slowly improving. Just please listen.
2. Listen w/o judgements, “you should do xyz”.
3. If he/she has judgements, find an empathetic way to express concerns. And try to be discerning when to bring it up to me.
4. Know that I easily get emotional and even though I try to think of the others’ feelings, I may not always find the right words. I may speak from a place of anger or frustration.
5. Know that if #4 happens, once my nervous system is settled down, know it is my responsibility to take repairative action. Your feelings are as valid as mine.
6. Trust me. See me. Love me.
After a day of bucking against the confines of my body and the medical system alike, I pulled the edges of my mind together and smoothed them anew. Pulling out my abandoned riding boots, I imagined the smooth canter of hooves, the lazy swish of a tail, the rhythmic marriage of gentle giant and rider. Most of all, I remembered a girl I used to know; brimming with vitality. I think, or maybe I’m just hoping, I will know her again someday soon.
Among a burgeoning handful of nuggets about chronic illness I wish to impress upon the healthy, perhaps the most pressing is that it is all true. When she tells you she is clawing at the fiber of life; that she is broiling in a noxious stew of calamity; that the mundane details have transformed into haunting beings knocking her down again and again, believe her.
This is not a case for crying wolf. Chronic anything implies that it sustains over time. Please do not doubt that an intolerable cacophony of pain, pain, pain can and does suffocate without pause. When she tells you she’s shattering under the weight of it all, believe her. With your words, with your presence, with your every atom, believe in her imprisonment. Such a validation can only bolster some kind of emancipation.