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Opinion

The support that keeps me going: How my chosen family saved my life

Content note: This story discusses sickness and suicidality.

My little chosen family of partners, exes, and best friends has seen me through more than enough physical and mental health crises, but none so life-changing as in the last two years.

Readers who have known me for some time may have wondered where I was for a period.

I spent nine months hospitalised and almost died several times. I’m certain that without the support of my family, I would have.

Induced coma

I’ve had a bad stomach for a long time. Doctors had investigated but could never find anything specifically wrong.

Once in a while I would have to visit the emergency room, where they would typically treat me with morphine, let me sleep off the pain, and send me home.

I’ve lived with several chronic illnesses for years, so this just became an occasional part of my life that I accepted.

One day, two winters ago, it went differently.

The doctor sent me home with a couple of pills, but instead of the pain clearing up overnight as usual, it worsened. I woke in agony, unable to stand up, and called an ambulance to take me back.

My memory of that second trip to the emergency room is hazy. They couldn’t give me enough morphine to relieve the pain.

I’m told that I was then admitted, and the doctors did some tests that didn’t find anything.

My partner said he came to visit and heard screaming from the ward, finally realising it was me.

I have no memory of those few days. The next thing I remember was waking up from an induced coma after surgery.

I had a ventilator tube in my throat and bandages on my stomach. I had no idea where I was and couldn’t remember why I might have had an operation.

I don’t think I was in much pain from my stomach at that point, but my throat felt shredded.

A nurse told me the date; a week had passed.

Removing the ventilator seemed an eternity of absolute torture. The second it was finally out, I snatched the tube from the nurse in case they wanted to put it back.

Intensive care

Someone brought me Vaseline for my lips (bliss after a week) and a phone to call my partner, who had been waiting the whole time at the hospital for me to wake up.

I was disoriented and physically could hardly speak, and I tried to give him directions to the (wrong) hospital I thought I was in.

I was still terribly confused, and having him by my bedside in intensive care was an enormous comfort.

I had panicked because after being unconscious for so long, I couldn’t remember where I worked, and of course none of the nurses knew.

The small reassurance of my partner reminding me what my job was helped me feel less afraid.

I didn’t really understand what was going on. The doctors were taking blood from me very regularly and they were extremely unhappy with the results.

At one point I asked if I would be going home that day, and the doctor’s voice was filled with pity when he told me no.

Eventually, I understood that I’d had surgery to remove a good deal of my small intestine, which had somehow become twisted and died.

My blood pressure had been dangerously low, among other things, and the staff had feared I wouldn’t survive.

My partner stayed by my side, soon joined by his partner (also my ex) and my ex-spouse (also my ex’s ex… I won’t get into the further complexities of the relationship diagram).

They listened to my drug-addled observations about the intensive care unit, sent emails to my bosses for me, and sat with me all day and night.

We didn’t know how long I would be in the hospital. Initially, I thought perhaps it would be a week or two.

As my condition worsened, it became a perpetual case of “probably another couple of months”.

After a point, I came to feel that I would be there forever.

Worse than jail

Photo: Some months of being unable to move to shave.

The hospital psychiatrist visited with me and remarked that he thought it was worse than jail – at least in jail, you can go outside sometimes. (I still sometimes make the Freudian slip of saying jail instead of hospital.)

He prescribed a constellation of pills to try and keep me sane while I was helpless in bed.

I spent nine months attached to tubes and bags and monitors. I had more surgeries that eventually removed almost all of my intestine.

I had just about every complication imaginable: infection in my catheters, internal bleeding, a couple of rounds of pneumonia.

I had countless blood transfusions and was constantly coding, going in and out of intensive care.

I was often in too much pain to even turn myself over, and my body slowly weakened and atrophied, so that I was unable to walk once I could get out of bed.

I lost all sense of dignity as I had to wear diapers and be washed by the nurses.

For months at a time, I couldn’t eat and was fed through a line in my arm. I made lists of foods and drinks that I missed, fantasising about sandwiches.

I don’t particularly have contact with my biological family. My partner and the rest of my poly family visited me regularly the whole time I was admitted, even though the hospital was hard for them to get to.

My partner came twice a week without fail, and others visited whenever they could.

They brought books and movies to keep me occupied, snuck me in smoothies when it wasn’t too dangerous for me to drink, and listened when I told them how horrible and hopeless I felt.

They acted as my advocates, talking to the doctors about my illness and fighting for me to be treated in line with my wishes when I was unconscious.

Since I wasn’t working, I had only welfare to pay my bills, and my ex-spouse even helped by making some mortgage payments for me.

Despair

My chosen family came to visit me in intensive care for my birthday.

I’d been looking forward to it, but I was so sick I almost didn’t want to see anyone.

I spent the day vomiting and crying. I cried a lot; after everything, my threshold for misery was very low.

I also developed a total intolerance for pain, and every minor procedure – suture removal, blood drawing – became excruciating.

The nurses were kind enough to let me do a lot of basics like changing dressings and catheters myself. They remarked more than once that I should have an honorary nursing degree.

I started to despair. Remembering my life outside of the hospital became harder and harder, as did imagining recovery.

Photo: After a close friend visited to shave me.

I started to think about how I could kill myself. I thought perhaps if I could sever the big line from the vein in my arm, I might be able to bleed out.

At one point the doctors told me I had a blood infection from that line and that they needed to change it or I would die, and I had to be convinced to let them do it.

Holding onto hope

A key principle of most people’s polyamory is not putting all your relationship requirements – emotional, sexual, or otherwise – on one person.

Even though at this time in my life I have just one romantic partner, I have a beautiful network of lovers and friends I can always rely on.

My family’s support helped me keep a connection to my old life outside the hospital and hold onto hope that I would get back to it someday.

Once I began recovering enough for it, they would push me to the cafeteria in a wheelchair, or come to physiotherapy with me and cheer me on while I slowly learned how to walk again.

Christmas was depressing.

I’d planned to take day leave from the hospital and spend a few hours celebrating with my partner, but I was too unwell.

While I was sleeping, one of the nurses put a Christmas card from the staff where I could see it, and when I woke, I was so touched that I cried.

Several members of my poly family spent New Year’s Eve with me.

We were interrupted by the open wound in my abdomen leaking stomach acid all over the bed, but we watched the city fireworks from my hospital room window, and things felt at least halfway normal.

Recovery

Still more months went by, and instead of getting sicker and sicker, I finally started to improve.

I spent more time with the physiotherapist, getting used to walking a bit.

I even started keeping a little dumbbell next to my bed to do some light weight training.

I was able to eat again, even though I didn’t keep much down.

In April, after some vague talk of being allowed to go home “soon”, the doctors suddenly asked me if I’d like to be discharged the next day.

Of course I wanted to – even though part of me was afraid of how I’d cope after so long.

My partner and an ex packed up all my books and other supplies from my room and drove me home.

I live alone, but a close friend who had visited me every week in the hospital stayed with me for a few days, helping me around the house and making sure I could look after myself.

Photo: At the 2019 Trans Community Awards with Rae White.

Recovery has been very slow.

After coming home from the hospital, I had terrible trouble every day with vomiting and other symptoms that are only now beginning to improve.

I walked with a stick for a while, and leaving the house still causes me a lot of fatigue some days.

I’m told I’ll be prone to malnutrition and related illnesses for the rest of my life. I have spinal cord damage from a severe vitamin deficiency.

Some days I’m still miserable about everything and feel like I don’t want to go on struggling.

But I try to remember that while things will never be the same, I am getting better.

I couldn’t have gotten through my interminable hospital stay without my special poly family, and they continue to be the support that keeps me going.

In many ways, I’m extremely lucky, and I couldn’t ask for better people in my life.

If you need support or someone to talk to, please see our list of community services and resources.

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