If you’re new to this series, start here.
by Jenny Blaser
“I can’t believe they won’t give me a day pass!” I am laying on my side, with Andrea stretching my left leg. She is my private physiotherapist, but she has been coming to the hospital to do my regular stretching routine.
“Why won’t they give you one?” She shifts my leg to a different position to stretch a different muscle.
“I don’t know - Alice, the nurse, said it is because they think if I am well enough to go out for the day then I must be well enough to go home. Are the doctors clueless, though? I am still here because I can’t go home! I can’t get around in my old apartment. I need a day pass so I can go look at new apartments and find one so I can then, in turn, go home! OW! You are stretching me too far!” I swat at Andrea to really impress the final point.
“That seems a bit ridiculous. Do they just want to keep you here forever?” She shifts my leg once more to appease me and halt the protest.
“Yes. It’s like Guantanamo Bay. Forever and for no reason.” Andrea looks towards the door and I follow her gaze. Alice is standing there.
“Someone else is here for you. They say they are Occupational Therapists? Can I send them in?” Alice looks really confused.
“Yeah, I know. I’m expecting them. It’s all good – Andrea, that’s the people from Shoppers and Brenda, my OT. I think we are out of time for stretching.” I try really hard to seem disappointed that this torture session needs to end. If it didn’t help so much to have her stretch me I would definitely never agree to it. It is really painful sometimes!
“Okay! I can come back on Friday if you want. Just let me know!”
As Andrea walks out, Brenda and Kim come in. I’m comforted by their presence. I used to fear Brenda because she is tough and firm when she needs to be. She tells it like it is and her many years of experience in the field have led to a no-nonsense approach to her work – especially with clients like me who tend to push their limits. Her shoulder length straight brown hair is always well kept and today I am taking note of her warm eyes and simple glasses. Her gentle smile makes me feel safe with her here.
“Hi Jenny! And hello, Penny!” Kim reaches down to pet Penny, her long curly blond hair falling into her face, covering her lips so I can’t see what she is saying anymore. She is a definite animal lover and Penny adores her. I’ve not known Kim as long as Brenda but her presence is equally calming and reassuring.
“Oh … wow.” Brenda looks surprised “You weren’t joking when you said you were having spasms…” It’s clear that she is taking in what is before her. The last time she saw me I was in my manual wheelchair, able to push myself and do everything independently. Last time she saw me we had a conversation about how I needed to slow things down to preserve my joints. Last time she saw me I could dress myself and go to the bathroom alone. Last time she saw me I was living at home and totally independent.
Brenda sits on the bed beside me, grasps my left wrist and tries to straighten my left arm. Since this all began, my left arm has been contracted. My elbow is completely bent and my hand is touching my shoulder. My wrist is bent and my hand sits at a 90 degree angle to my arm, all of my fingers are clenched into a fist with my thumb resting in the middle. I cannot voluntarily straighten out any of it but every day Molly, the hospital physio, comes and opens up my hands and straightens my below so that I don’t do permanent damage to the joints and tendons. Brenda is now doing the same thing.
“Do you have any bracing to hold the hand open?” Brenda is slowly extending each finger and holding each one straight for a few seconds. It is uncomfortable but also feels oddly good – like stretching your legs after a long car ride.
“Not yet. We are working on it.”
“Okay, well, we are here to talk chairs. I think we need to go to full power positioning after seeing you. You need it all now.” Brenda releases my left arm and it recoils back to its contracted position. “How is the rest of your body?”
“I have torso spasms and I can’t really hold myself up right now. I can’t stand anymore and it is very hard to straighten my legs with the spasms. I can’t push my manual chair. I can still transfer independently but they only let me with supervision since I had a few falls.” Kim is taking notes as I speak.
“What’s the plan? Do you know about rehab or anything?” Kim asks and Brenda nods, affirming the question.
“We are still waiting for rehab. I am looking for a new apartment so I can get out of here. You’ve seen my place. There is no way I could function there.” Both Kim and Brenda smirk and I am sure they are trying to imagine me in my old space with this new body.
“So what are they doing? Anything? When you emailed asking us for help transitioning to home I was shocked! Yeah, we are the people who do the wheelchair stuff for you but when you were asking about functioning in your bathroom? No, that is on them! We will, of course, never leave you hanging, but I’m shocked, to be honest.” Brenda’s outspoken side is starting to show a bit.
“No, I agree. I have been on my own for a lot. Don’t get me wrong, the nursing staff is amazing. The occupational therapist and physiotherapist here are great, too, but they don’t have the resources I need. I need to be at an inpatient rehab, but none of them are accepting me. I am not even getting basic health care here. The doctors don’t see me – I need to beg to get medical attention … and I am admitted to internal medicine in a hospital!” As I go through the absurdity of it all once more, I realize how lucky I am to have Andrea, Brenda and Kim to fill in. They don’t need to come to the hospital to help me, but they do.
“That’s just ridiculous. I can’t believe it, to be honest. We need to get you out of here. You are 23 and you need to be in rehab, not in a medical hospital! Can you transfer to your chair?”
“You may not want to look. I kind of throw myself at it and somehow always land in the seat.” Brenda looks away and I leap into my wheelchair. “I agree. I need out of here. I really believe that if I wasn’t already a wheelchair user before all of this that it would have gone very differently so far.” I start to cry and really quickly wipe away the tears. My frustration is abundant.
I know that if it were not for a wonderful group of health care providers in the community, I would not be getting what I need right now. I get physiotherapy from the hospital every day, but it focuses on my left arm and shoulder, nothing else. My legs need to be stretched and moved around or else I risk blood clots and further complications, but the only way I get that is from my community physio and from my friends who have been taught how to do my stretches. My community occupational therapists are helping me find a way to get back home, when transitioning me is really the hospital’s responsibility.
Beyond that, my community social worker comes to see me once or twice a week and I am using every resource I have to help me look for housing. The hospital social worker is helping a bit, but ultimately he doesn’t know how to support people my age. He is used to looking for nursing home placement, not independent living apartments. Medically, it is as though I am non-existent. I email near daily with my family doctor and she is providing me with the medical advice I need. We have arranged an appointment in two days, when I will leave the hospital for an hour and go to her office to get what I need. Sadly, it is the only way I will be able to receive care. There is something very wrong with this picture.
Jenny Blaser is a young, Deaf and Disabled Queer who loves all things pink and butterflies. She is a chronic story teller who uses narrative as an act of resistance and reclamation of identity and experience. To learn more or to reach Jenny, check out http://fiestydeafanddisabled.wordpress.com/