Blog Series
Series Finale: Part 15: A New Definition of Freedom
Photo: Jenny Blaser / Composition: Erin McPhee
If you’re new to this series, start here. This is the final installment of this series.
“You’re freeee!” In springs Shelly, clearly as excited as I am for what the day will bring.
“I know! Shoshana and Leah are picking me up at 11:30am! T-minus 2 hours!” My enthusiasm is evident. Finally! It is time to go home.
“Shall we get you up and showered? Do you have a special outfit you want to wear for the big day?” Shelly is doing the obligatory morning hunt through my locker, discerning which bags contain laundry and which contain clean clothes. “Ohh! I like this shirt, you should wear this!” Shelly beams, holding up a light, yet bold, green t-shirt with cap sleeves and ruched/bunched up fabric sewn around the left shoulder.
“Sure, I like that one. Can you find my black yoga pants? They are easy to get into but not hospital-looking … and my pink bra and blue underwear? The polka dot ones with the lace around the edge?” I have completely adjusted to having everything be public knowledge, and my self-direction skills are getting stronger by the day.
Shelly locates all the required garments and gently tosses them in my direction. I transfer into my power chair and collect the clothes from the bed into my lap. Shelly is still rooting through my locker looking for my shower bag, and as I turn and head to the bathroom, she is ready to follow.
“So - are you headed to your new place?” Shelly gestures for me lean forward so we can get my pyjama top off.
“No, I am going to my old apartment. I will be there for a week before moving so I have time to pack, sort … you know, that kind of stuff.” I try to help Shelly get the shirt up and over my head, guiding my contracted left arm through the hole. A small glance toward the floor cues me to grab the bar on the wall and pull myself to my feet for a brief moment while Shelly gets my pants and underwear down to my knees. I sit down in my chair once more and she wiggles the pants and underwear off my legs and slides my feet through. For the final time I make the too-quick transfer to the small shower seat. As always, it’s cold and I grab my left leg, crossing it over my right with the help of my hand, in an attempt to keep as little of my bum/thighs on the seat as possible.
“So what are you going to do for the week? Who is going to help you?” Shelly turns on the water and we wait for it to warm up. She is careful not to let any of the cool spray hit my already chilled skin.
“I have friends scheduled for every night. They will come between 6pm and 9pm and help me cook dinner and get into bed. They are going to sleep on my pull-out sofa,too, so I am not alone in case something goes wrong. Community Care Access Centre - I think most people call it CCAC, right? – well, they are coming in the mornings and sending someone for an hour to help me do this stuff … you know, like showering and getting me dressed and ready for the day. At least, that is what the social worker told me yesterday.”
I see Shelly approach me with the shower head, her calm demeanor reassuring me that it won’t be too cold now. She starts to wet down my legs and waits for me to nod before moving slowly up my body to torso and arms.
“That sounds great, Jenny! You have amazing friends. You’re lucky. I hope you know that. We don’t see people with that much support come through here very often. Have you met with CCAC yet or talked to anyone about it?” Shelly passes me the loofa and we get it all soapy. Together we wash my body – me doing the parts I can, Shelly doing the parts I cannot.
“Not really. I haven’t heard much. I think someone said that I would meet with someone here before I leave?” We finish up the last of the washing and pause from our dialogue to focus for a moment as Shelly rinses the soap off my body and then guides my head to tilt back. She wets my short hair. It is nearing a bit longer than inch now and looking quite shaggy after this month here. I have a hair appointment this afternoon to get it “cleaned up” and help me feel pretty again: less sick and more … like me.
“Yes, our hospital CCAC coordinator will come in and chat with you, and I can come in too, if you want.” Shelly waits for me nod and squirts some shampoo into my hand before continuing. “We will explain your needs together and she will put in the request for services. It should be all set up, and someone will come in and do this stuff for you. Remember to be just as forward with them as you are with us! It is your care and you are in charge.” I finish massaging the shampoo into my hair and tilt my head back again for Shelly to rinse it out. With that, my final shower in the hospital is done. We wrap me in a towel and move me back into my wheelchair.
“Oh! Someone is at the door!” Shelly hurries over to open the door, glancing over her shoulder before doing so to make sure I am ready and fully dressed. I pull my shirt down and smile. A woman I’ve not seen before is in the doorway. She is wearing a black pantsuit with a robin’s egg blue button-down dress shirt underneath. Her patent leather dress shoes clearly live in her office and are changed into upon arrival. They are shockingly shiny and call my attention to her feet. Her deep, dyed, auburn hair is groomed in a frizzy, but straight, shoulder length bob with straight puffed up, round brushed bangs. Her full cheeks accommodate her smile and a little bit too much blush.
“Hi Jenny, I’m Marcie. I am the Community Care Access Center Coordinator for the hospital. So it is my job to meet with you and work out what all you need in terms of support going home. Can we chat now? I think you are leaving in just an hour or two, right?” Her cheery demeanor is so fake and I am not falling for it.
“Yes. I am leaving in an hour and a half. Now is fine.” I look to Shelly briefly. Her face is saying, “I know. Play nice. You gotta do it.”
“All right, perfect.” Marcie shuffles some papers around in her hands. “So I see here that you are being discharged home. I am told that you don’t need nursing support – meaning you don’t need medical support at home, like medication administration or IV care, right?” Marcie’s cheeks expand to accommodate an awkward strained smile and I nod, feeling pressured to agree and release her from what seems to be a painful exercise in checklist repetition and scripted engagement.
“Jenny is good with her own medical management” Shelly jumps in, sensing the tension. “She just needs support with showering, dressing, meals - that kind of stuff!” I smile at her, happy for the advocacy and support she has afforded me for the last month in this hospital.
“All right … no … medical … care.” Marcie records a few notes in what seems to be my new CCAC file. “So then, for personal support work, or PSW for short, you are eligible for a three hours a week for showering and that sort of stuff an—“ I look at Shelly, who cuts Marcie off mid-sentence.
“Jenny can’t shower or dress independently right now. She can’t cook or cut her own food, open bottles… she needs, at bare minimum, one hour in the mornings. She has friend support at night to help her get to bed and with dinner, but she needs one hour in the mornings. It is pretty much the only time she really uses The nurses here!” Shelly is a fierce mama bear at times, and I am so happy she is here. I have some good self-advocacy skills but these situations are still new for me. I am not used to needing care at home, and I don’t know what I can fight for and when to just take what I get.
“Well, if she has friends helping her at night, surely she can arrange the same in the mornings. I mean, 3 hours a week is generous. Most people will get one or two coming from the hospital.” Marcie’s cheeks start to deflate and forced cheer becomes forced neutrality.
“Wait, you mean it’s expected that my friends, like the people I go for coffee with, sit beside in class, and talk to late at night when I’m sad or happy - you want them to bathe me, put on my bra, and help me with my pads when I have my period? Do YOU want YOUR friends seeing your bits?!” I seem to find my voice and join the fight. Shelly is beaming in my direction, proud of my forward and clear attitude.
“Well, sometimes we don’t have a choice. Funding is hard to get and you’re lucky you –” Shelly interrupts her again and is fierce this time.
“Jenny asked if YOU would want your best friend to see YOUR ‘bits’ - would you?” Shelly articulates the ‘ts’ with such passion that you can see spit shoot from between her teeth.
“No, I wouldn’t.” Marcie admits her defeat. “I will put you down for seven hours a week, but I will have to convince your official case worker to do it. It is much higher than the standard discharge allotment.” Marcie continues to scribble notes on her paper and thrusts it towards me to sign.
“It might be more than standard, but I am not standard. I am a young, active, disabled woman who leaves home daily and who needs to be both dressed and clean to do so. To deny me that denies me employment, social opportunity, and an education. If you could only shower and get dressed three times a week, I would like to see you try to present yourself for work in a manner that allows you to keep your job.” I break the searing eye contact I was holding and moving my hand in any way it will with a pen and call it my signature.
“Well, I will put in the request but it isn’t up to me to decide.” Marcie takes the papers back from me and turns to leave. “Oh, your caseworker will be in touch before the first shift – so likely later this evening.”
“Well done, Miss Jenny!” Shelly holds up her hand for a high-five. “I gotta go do morning ‘stuff’ with my other patients, but just call if you need help packing up and I will be in and out to do your discharge. You are almost free, my almost-no-longer-hospital-dwelling friend! WOO!” With that, Shelly turns and skips out of the room. A journey that I will soon make for myself, for the first time in a month.
I cannot help but reflect – “I just need some IV muscle relaxers,” I said, a month ago, to my health care team and friends. I never expected to be here a month, let alone have it be the month it was. Yes – I am going home, but I am doing so without answers and without a clear picture of what is to come next.
