Numerous petty disputes with one of the head nurses about weather I can or cannot have the door to my room left open. I have claustrophobia and hate to feel trapped. She claims that I must keep it closed. It’s difficult for me to argue with her since I feel nauseous all the time and now very weak. I can only eat fruit and yoghourt. I have been nauseous since I arrived back in London which is a month now. I am feeling increasingly despairing and doctors have failed to solve it, I think it’s the mixtures of meds I’m on. I feel odd in my body since my temperature control appears to have broken. I try to force myself to eat but it’s difficult and the food tastes like cardboard. The only relief is the visits of my friends and family. Otherwise I feel like a prisoner here in a totally alien environment. There is a discharge from my wound where I had my catheter operation and there may be an infection. I am waiting to find out. No good news this time except that I may be moving on in the next few days where there is a better neurological facility.
Sachin, my son, says I should note that interesting people have come to visit me and have had conversations amongst themselves about politics, food, sexuality, hospitals and various other subjects that are worth listening to. But I struggle to engage. However, I love to hear the voices and their enjoyment as they bring little pieces of the outside world into this room. Sachin thinks I will look back on this as an interesting time but at the moment it doesn’t feel like that at all. He says that perhaps it’s only when one looks back on their suffering do they find some meaning in it.
Your loving writer Hanif
xx
Hi Hanif, I’ve been following your chronicles passively but felt the need to write now. My father was hospitalised for 10 months, and I attended his bedside a few times a week. He also had nausea — for a ridiculous length of time — until the pain management team reviewed his meds. Turns out he didn’t respond well to codeine and opiate derivatives. Please press your ward to ask for a review, especially if your eating isn’t approving. We nearly lost my father twice to sepsis / malnutrition so I hope your nutrition (and water) balance fall into line. My dad has been out for 7 years and is now still full of the usual rage, acclimatising to his wheelchair and driving my mother mad but we’re glad it’s all in the past (as your son says).
I’m telling you all this because things may seem awful right now but all this (horrible hospitalisation) too this shall pass :) x
How you look back on it will doubtless be based on where you're at when you're doing the looking.
I've now lived almost half my life, in a numb, clumsy, alien body - even though that body is considered a 'miracle' because it recovered '95%' from total quadriplegia. 95% is definitely in the eye of the beholder. I'm 63. I was paralyzed at 32. I have myelomalacia, a degradation of the spinal cord from the original injury. It may progress so slowly that it doesn't affect me much (it is affecting me some), or it may turn me into someone with something quite like ALS, wherein I eventually can't even swallow, talk, breathe. There's no way of knowing.
What is pretty much guaranteed for anyone with a spinal injury, barring new medicines and therapies, is that we will have a harder time as we age. Even for the uninjured, by the time you're 85-90, only 25% of your spinal cord is still working. Considering that mine is damaged, and, through the miracle of neuroplasticity, already using redundant circuits, the possibilities for having trouble walking, controlling my bowels, etc. as I age are large.
And yet... here, at 63, with palpable issues and debilities stemming from my original injuries (brain as well as spinal) still remaining, and scary new signals coming from the myelomalacia, I still look at my accident, and my recovery from it, as 'an incredible gift in horrendous wrapping paper', or, as the first piece of music I wrote after being paralyzed (on piano, because it took me 9 years to be able to play guitar again, and many months before I could laboriously plink out single notes on a piano), was called, a "Beautiful Disaster".
My accident made me a better person. A grateful person. A deeper and more empathetic person. It also made me a deeply traumatized, sometimes very afraid person, one who micro-observes every slight change in sensation, coordination, spasticity, tonus, clonus, second by second. It's a double-edged sword, but I'm not sure I would undo it if I could.
Here's a poem about it, and about that nagging feeling that I somehow willed my misfortune into existence, in order to foment change, to kick me out of the orbit I was in (though, admittedly, this poem is more about the loss than the gain):
Orienteering
Somehow I found a quiet place
In the midst of the Home Show
Pearl Jam slamming out one more song
To the exhausted elated faithful
The throng sang in unison
Thousands of voices lifted in
Post-modern hymn
Around the laser-lit campfire
Where had it all gone
My fervor for the power
Of the glory of slamming out chords
and blood on my guitar
I still miss that primal feeling
A stew of fear and desire
those long sweaty nights at CB's
nauseated with stage fright
Then lifted to the peak
My lungs shaken by my own strumming
My heart powering my rhythm
in arcane subdivisions of its own steady beating
Now the beats wander
all over my heart
starting and stopping in disunison
Lost in their maze of self construction
I still play
But I've lost the ground
Instead my hands forget
bereft in their new-found simplicity
Twenty six years ago
I lost the feel
and maps and compasses
replaced body-knowing
Twenty six years of orienteering
a foreign terrain
in a foreign vehicle
an alien home slowly becoming innate
No longer jumping on the bed
with my tiny kids
to Evenflow's
Sullen sacrament
Sitting instead
Old and tired and post-crippled
Beside my beautiful boy
Thirty years strong
At thirty I'd already lost my brother
And my father
Two years later
I'd lose myself
Become the progenitor
Of the numb carrier of
Mental and physical maps
That I am now
At thirty-two
I lost it all
died and reborn
as a better sadder person
One all too familiar with
The immense power of pain
And the dark gulf of the past
Lost in pulped memory centers
Watching the boys
Slam out another Golden Oldie
I was struck once again
By my rage at my loss
Rage that my youth
Was ripped away
Stolen so damn young
Taken away by accident
Or was it a decision
Did I allow it to happen
Will it to happen
Or was it always thus