I feel like a little kid graduating from a crib to a big girl bed.
After 12-and-a-half years of sleeping in a hospital bed in our family room, I have moved on. To a regular bed in an actual bedroom.
I am elated and proud. And a tiny bit wary.
The hospital bed has been disassembled and soon will be picked up by trash collectors. Taking its place are a couple of new couches -- replacing the sectional we owned for nearly 30 years.
It’s a big win for the world of home decorating and for me. I’ve been sleeping in the out-in-the-open bed for a long, long time.
When I first got sick in 2005, doctors were unable to diagnose me for months. They suspected I had cancer, but they couldn’t find the specific cells (after numerous scans and blood tests, a splenectomy, grueling bone marrow biopsies and spinal taps). Meanwhile, I got sicker and sicker, lost more and more neurological function. I lost my speech, the sight in one eye and the use of one, then the other leg.
So I was in my home hospital bed months before I was hospitalized. I was too weak to climb the stairs to my bedroom.
The bed has been my home for more than sleeping for years. I am cancer-free (YAY!), but the non-Hodgkins lymphoma (eventually located after a brain biopsy) has left me disabled and weak and in nearly constant pain. Multiple compression fractures in my back make it impossible for me to sit up, walk or stand for long periods of time.
The only thing that makes the pain go away is to lie down flat. I would use my hospital bed many, many times a day for this. And for the occasional nap.
A few years ago, a friend took a fall and broke her ankle. While recovering, she could not go back to her condominium because it required going up stairs. She was looking for a place to stay after spending time in a convalescent facility, but she hesitated about asking friends to use their home. “It’s not like they can put a hospital bed in their living room.”
On one hand, it was embarrassing to have a hospital bed in our family room. Other times, it was a godsend. I learned to get over the embarrassment, as I had to do to with other aspects of my sickness.
When I first got out of the hospital after spending 4-and-half-months in institutions’ hospital beds, it was wonderful to have one at home. My own sheets, my own TV, a button to raise the head or foot of the bed, railings to prevent me from falling out and to help me sit up.
In those early months, my home nurse and my family caregivers used it as leverage to lift me into a wheelchair or a commode, and as a place to bathe and feed me. My physical therapist used it as a beginning site for my exercises, slowly getting my muscles to work again.
It was my anchor for celebrations. My husband, so happy I was home after many months away, threw a neighborhood party for me in June 2006. I was thin, weak, barely hungry and horizontal for most of the evening, but I loved seeing so many people. I was ecstatic I was home.
On my 50th birthday that same year, dear friends and family came to help celebrate my milestone. I managed to open presents, cut the cake (and eat it, too) while in bed.
At smaller get-togethers over the years, I would try to sit up and be sociable, but would have to lie flat after awhile, so I wouldn’t be in pain. As I gradually gained strength, the home nurse and physical therapist quit visiting. More than a year of intense chemotherapy, involving a week in the hospital and three at home, made me appreciate the ease of sleeping and recovering in the bed. Then, when the cancer returned and I underwent a bone marrow transplant, the bed helped as I again slowly regained my strength.
Later, the bed proved invaluable for my two separate carpal tunnel surgeries and months of recovery when I couldn’t use my hand to grip my walker. The button to raise myself up helped lift me to use my walker with a special elbow-steering attachment.
But there were downsides to sleeping in an open room all the time. Every time someone came to the lower level of our home late at night or early in the morning, I was awakened.
And the two cats we had over the years considered me part of the furniture. Day or night first Allie (RIP) and then Albert would jump onto the covers, snuggle up at or on my feet, or sit on my chest and breathe in my face or give me a quick couple of licks to make sure I was awake.
When my bed’s motor finally gave out a few months ago, it was stuck in the nearly-flat position. This was a great angle for my back, but bad for getting up or seeing the TV, particularly with Albert on my chest. Medical equipment companies said they would not repair it but would replace it. At a cost of about $2,000 with insurance, I declined. (When the bed was first sent it to me, it was on a rental basis. After a year or so, it was declared ours. We never paid a cent for it, because our medical bills routinely exceeded the maximum insurance limits.)
We instead decided to buy a sofa set that was easier to get in and out of than our previous one. And I could use a relocated lower bed in the adjoining room to sleep. (I couldn’t get in the previous one due to its height -- and the fact that steroids use during my sickness left me with osteoporosis and 2-and-a-half inches shorter.)
Bunny -- my cancer buddy who was a fixture on the hospital bed -- found a new home in the regular bed in the bedroom.
This new arrangement is working out fine. I’m definitely getting more sleep, uninterrupted. I’m adapting with a bit of difficulty to not having the bars on the side -- which I depended on to get up or turn in bed. And I’ve moved my rolling tray table -- which at times was piled high with medications or supplies -- into the downstairs bedroom so the area looks less like a MASH unit. I lie down on the new love seat when I need some flat time or move to the bedroom for long spells of back relief.
Our family room looks like a family room, for the first time in more than a dozen years. But I’ve learned that a family room isn’t just what’s pictured in furniture ads. It’s the good, bad and the ugly things that happen there. It’s life and how you adapt to it.
Goodbye, hospital bed. I could not have done it without you.