A Letter to my MP

I have a problem… not medical this time, but financial…

I began receiving Disability Living Allowance [DLA] when I was first diagnosed three years ago. The initial period for the welfare benefit was for three years, after which time I could reapply… I have recently reapplied.

DLA forms The Department for Work and Pensions [DWP], who manage these benefits, sent me a renewal application form to complete a few months ago, but I struggled to deal with it for a number of reasons.

When I finally did manage to complete it, with help from Chris, the Benefits Advisor at Maggie’s Centre, I misunderstood the date by which it needed to be sent in and it arrived after the date the initial claim ran out.

When I called to find out what was happening with the claim, I was advised that because it had arrived late, the original claim was now closed and the new claim had been passed to a new benefits section called Personal Independence Payment [PIP].

When I called the PIP section, I was advised that my claim was not yet on their system and that once it was, it could take anything up to six months! to be processed. During this time, I would not receive either DLA or PIP.

OLYMPUS DIGITAL CAMERAThis has a knock-on effect, as I have a car leased through Motability, a UK charity that uses the mobility portion of DLA to pay for the car lease at a reduced cost. It also includes car tax, insurance, servicing and if necessary, adaptations to the vehicle for people with various disabilities. Without the DLA payments, I will lose the car, which will have a hugely detrimental effect on my day-to-day life.

blue badgeAdditionally, being in receipt of DLA at the higher rate for mobility gives automatic entitlement to a Blue Badge for Disabled Parking. Without the DLA, I can apply for the badge, but the decision is conditional, so I will have to go to a lot of extra effort, getting letters from my GP and Transplant Co-ordinator to send in with the form.

The woman I spoke to at the Benefits Centre was calm and surprisingly supportive, but obviously has no power over the legislation, nor the staffing of the PIP processing section to shorten the time for my claim to be dealt with.

I had a moan to some friends and a number of them suggested I write to my MP, so this is my letter to Anna Soubry MP. Of course, I will report back on the outcome.

Dear Anna

I would like your support with a problem about a claim for DLA/PIP. Due to a delay in returning my DLA application form, it was referred to PIP. I have been told that the PIP claim may take up to six months to be processed. This is unacceptable and very distressing.

I am unable to work and have been in receipt of ESA (Support Group) payments and DLA (High-rate mobility/Mid-rate care) for three years. I recently received confirmation that a claim renewal application for ESA was granted. I am pleased to say that this matter was dealt with very promptly and efficiently.

I received the DLA claim renewal application in September 2013. The delay in returning it was my own responsibility, caused by a number of factors:
– fatigue and the difficulty I have concentrating and focusing on administrative tasks.
– thinking that my claim ran out at the end of February, when in fact it ran out on 16 Feb (an issue with retaining information due to cognitive difficulties)
– I did not complete the form sooner due to the changing nature of my disability over the past months
– dealing with new treatment has occupied my time, energy and cognitive abilities.

I am dealing with:
– multiple myeloma and its treatment (diagnosed in Feb 2011)
– a donor stem cell transplant [SCT] in May 2012
– Graft versus Host Disease [GvHD], an expected effect of a SCT, but impossible to gauge how, when or to what degree a patient will be affected.

The effects of the above issues cause:
– physical limitations – breathlessness and limb stiffness/inflexibility, both of which affect my mobility
– fatigue
– cognitive impairment, which affects my memory, concentration and ability to think clearly, read, retain information and carry out basic administrative tasks
– a compromised immune system, meaning a higher than average risk of infection and a harder task to treat any infection that occurs
– anxiety and depression, due to facing the prospect of an early death, dealing with a chronic life-shortening disease, fear of relapse and infection and adjusting to a compromised life.

I currently lease a Motability car, paid for by DLA mobility payments, which I will lose if I do not receive DLA/PIP. The DLA payments have also allowed me to pay for a cleaner, without whom I would struggle to maintain a clean home, as the bending and stretching required to use a hoover or change bed linen, for example, is very difficult and painful for me. Even washing dishes and food preparation has to be done in short bursts, before I am in pain or too tired.

Without a car, I would be too tired by the simplest of journeys to accomplish anything once I reached my destination, let alone the increased risk of infection from regularly travelling on public transport. I would also become further isolated as I would not be able to easily access places where I can meet people and get support. I just would not be able to go to certain places as the energy, time, planning and motivation to do so would be too much.

For example, if I go to Maggie’s Cancer Support Centre, based at City Hospital, where I receive a lot of relevant support and companionship, I would need to walk about 20 minutes (or longer if my legs are bad), getting out of breath in the process, to catch a bus to QMC, then take the MediLink to City hospital. The whole journey would take about one and a half hours, in normal traffic.

At present I attend hospital twice one week for treatment and once the next week for clinic and line flush. While I can claim for bus travel or car parking to get to the hospital, they will not cover the cost of a taxi, so getting to hospital appointments would not be possible by taxi.

For a 10:00am appointment by bus, I would need to leave the house around 8-8:30, which means my journey would take longer due to rush hour traffic. It takes me a long time to get out of bed, washed and dressed, due to the stiffness in my arms and legs, which is worse after sleeping or resting. If I had to leave the house that early, I would have to start getting up around 6-6:30am.

Even if I cannot receive the PIP/DLA payments for six months, I would hope they would be backdated once the claim was agreed, in which case I would be able to manage with help from my family in the interim, but if I lose the car, it will have a hugely detrimental effect on my day-to-day life.

I can give more details if you need them. And while I still have the car, I can get to a surgery at any location in Broxtowe if you agree to meet with me.

I look forward to hearing from you and hopefully receiving your support with this matter.

Regards

I am pleased to report that very shortly after I sent this, I received the following in reply:

Thank you for your email, though I am sorry to hear of your concerns regarding your PIP claim. I am happy to make further enquiries with the DWP regarding your claim (and in particular whether any claim could be backdated). I will however require your national insurance number and date of birth.

I have copied [my assistant] into this email and if we require any further information, I am sure that she will be in touch with you.

With best wishes

Anna

I have no idea whether to feel hopeful or not, but a prompt reply is a good beginning.

The grand finale – Part I

If you thought this post is about my own finale, you’d be right. Those of you who hoped it was a teasing headline about something else may be disappointed, but hopefully not saddened. It’s not a gloomy post, I promise, but I’ll warn you now, it is rather long.

In part, I’m revisiting an earlier post on my other blog, Living with Questions, where I asked what plans, wishes, music, poems, etc. you want for your final farewell… or if you just want to leave it to others to choose?

As I said in that post, “I know this is upsetting for some of you to read, but for me it’s a reality, that although I can’t quite fully comprehend or feel, I can at least talk about plainly.”

Item no. 16 on my List for Living is to “Plan my burial ceremony, find the perfect burial place, choose the tree I want planted”. So this post is the ceremony part of that. I’ve not yet chosen the tree or the location.

One thing I want to say at this point is that I don’t think so much about dying these days. Being 17 months post-transplant and in pretty good health (for someone with myeloma!), I’m much more focused on life. Nonetheless, it’s still likely that the myeloma will make a reappearance at some point and that my life will be shortened as a result. And even if I do live into my 90′s and simply die of old age, at least I’ll have everything in place.

I may have to leave the order to someone else, but here are the songs I would like:

Is That All There Is?, by  Jerry Leiber & Mike Stoller, sung by Peggy Lee

I remember when I was a very little girl, our house caught on fire.
I’ll never forget the look on my father’s face as he gathered me up
in his arms and raced through the burning building out to the pavement.
I stood there shivering in my pajamas and watched the whole world go up in flames.
And when it was all over I said to myself, “Is that all there is to a fire?”

Is that all there is, is that all there is?
If that’s all there is my friends, then let’s keep dancing
Let’s break out the booze and have a ball
If that’s all there is

And when I was 12 years old, my father took me to the circus, the greatest show on earth.
There were clowns and elephants and dancing bears
And a beautiful lady in pink tights flew high above our heads.
And as I sat there watching the marvelous spectacle
I had the feeling that something was missing.
I don’t know what, but when it was over,
I said to myself, “Is that all there is to a circus?”

Is that all there is, is that all there is?
If that’s all there is my friends, then let’s keep dancing
Let’s break out the booze and have a ball
If that’s all there is

Then I fell in love, with the most wonderful boy in the world.
We would take long walks by the river or just sit for hours gazing into each other’s eyes.
We were so very much in love.
Then one day, he went away. And I thought I’d die – but I didn’t. 
And when I didn’t I said to myself, “Is that all there is to love?”

Is that all there is, is that all there is?
If that’s all there is my friends, then let’s keep dancing

I know what you must be saying to yourselves.
If that’s the way she feels about it why doesn’t she just end it all?
Oh, no. Not me. I’m in no hurry for that final disappointment.
For I know just as well as I’m standing here talking to you,
when that final moment comes and I’m breathing my last breath, I’ll be saying to myself,

Is that all there is, is that all there is?
If that’s all there is my friends, then let’s keep dancing
Let’s break out the booze and have a ball
If that’s all there is

This song was the first song I knew had to be on my list. It’s probably my all time ever favourite song. It’s this song that, if I was on Desert Island discs, would be the one I would have to save from the waves. I love how it so perfectly swings between absolute depressive despair and the high of living life to the full because that’s all there is. This song above all others keeps me sane and able to laugh at life. I hope it will have an equally uplifting effect on those who come to mourn my death and celebrate my life.

The next one continues in a similar vein and has always had a profound effect on me. I was very fortunate to grow up listening to a wide range of music from all over the world, long before World Music became such a familiar genre. This particular version is beautifully sung by two of the most amazing, powerful singers: Mercedes Sosa and Joan Baez. It’s written by Violetta Parra, who was an inspiring Chilean woman, poet, singer and artist, who reinvented Chilean folk music.

Gracias a La Vida, by Violetta Parra, sung by Joan Baez & Mercedes Sosa

Gracias a la vida que me ha dado tanto
Me dio dos luceros, que cuando los abro,
Perfecto distingo lo negro del blanco
Y en el alto cielo su fondo estrellado
Y en las multitudes el hombre que yo amo

Gracias a la vida que me ha dado tanto
Me ha dado el oído que en todo su ancho
Graba noche y día, grillos y canarios,
Martillos, turbinas, ladridos, chubascos,
Y la voz tan tierna de mi bien amado

Gracias a la vida que me ha dado tanto
Me ha dado el sonido y el abecedario;
Con el las palabras que pienso y declaro:
Madre, amigo, hermano, y luz alumbrando
La ruta del alma del que estoy amando

Gracias a la vida que me ha dado tanto
Me ha dado la marcha de mis pies cansados;
Con ellos anduve ciudades y charcos,
Playas y desiertos, montañas y llanos,
Y la casa tuya, tu calle y tu patio

Gracias a la vida que me ha dado tanto
Me dio el corazón que agita su marco
Cuando miro el fruto del cerebro humano,
Cuando miro al bueno tan lejos del malo,
Cuando miro al fondo de tus ojos claros

Gracias a la vida que me ha dado tanto
Me ha dado la risa y me ha dado el llanto
Así yo distingo dicha de quebranto,
Los dos materiales que forman mi canto,
Y el canto de ustedes que es mi mismo canto,
Y el canto de todos que es mi propio canto
Gracias a la vida que me ha dado tanto

Translation:

Thanks to life that has given me so much
It gave me two eyes, that when I open them,
Perfectly distinguish black from white
And in the sky above, its starry depths
And amongst the multitudes, the man I love

Thanks to life that has given me so much
It has given me an ear that in all its scope
Records night and day, crickets and canaries,
Hammers, turbines, bricks and storms,
And the tender voice of my beloved

Thanks to life that has given me so much
It has given me sound and the alphabet;
Along with the words that I think and express:
Mother, friend, brother, and light illuminating
The path of the soul that I love.

Thanks to life that has given me so much
It has given me the march of my tired feet;
With them I have walked through cities and puddles
Across beaches and deserts, mountains and plains,
And to your house, your street and your garden.

Thanks to life that has given me so much
It gave me a heart that beats against its cage
When I look at the fruit of the human brain
When I see the good, so far from the bad,
When I look into the depths of your clear eyes

Thanks to life that has given me so much
It has given me laughter and it has given me tears
So I can distinguish between joy and pain,
The two materials that form my song,
And the song of you all that is the same as mine,
And the song of everyone that is my own song
Thanks to life that has given me so much

And another song of thanks for those who have loved and cared for me throughout my life, who have picked me up when I’ve been down, who have cared for me when I’ve been ill and heard me when I’ve shouted or just whispered:

Thank You for Your Love, by Antony & the Johnsons

Oh thank you for your love
Thank you for your love
When all is falling in the seizure of pain
Oh thank you for your love

Thank you for your love
Thank you for your love
When I was lost in the dark blackness
Oh thank you for your love

I want to thank you, oh
I want to thank you, oh
I want to thank you, oh

I want to thank you, oh
Thank you

Thank you for your love
Thank you for your love
When my mind was broken into a thousand pieces
Oh thank you for your love

I want to thank you, oh
I want to thank you, oh
I want to thank you, oh
I want to thank you, oh

Thank you
I thank you

At this point, I feel torn… I want one of two Leonard Cohen songs, but I can’t quite decide which. The choice is between Lullaby and Come Healing. I get pretty sure about one and then I hear the other and change my mind. I think it will probably be Come Healing, but it does sound a little bit like a hymn, which bothers me a tad. But hey, it’s a beautiful song – so poignant and I love the line “O, longing of the arteries to purify the blood” – so apt for a myeloma patient! Maybe at some point, if there’s time, Lullaby could be played too for good measure? Here’s the link, in case you want to have a listen: http://youtu.be/lgjwDL9_XXI.

Come Healing, by Leonard Cohen

O, gather up the brokenness
Bring it to me now
The fragrance of those promises
You never dared to vow

The splinters that you carried
The cross you left behind
Come healing of the body
Come healing of the mind

And let the heavens hear it
The penitential hymn
Come healing of the spirit
Come healing of the limb

Behold the gates of mercy
In arbitrary space
And none of us deserving
Of cruelty or the grace

O, solitude of longing
Where love has been confined
Come healing of the body
Come healing of the mind

O, see the darkness yielding
That tore the light apart
Come healing of the reason
Come healing of the heart

O, troubledness concealing
An undivided love
The heart beneath is teaching
To the broken heart above

And let the heavens falter
Let the earth proclaim
Come healing of the altar
Come healing of the name

O, longing of the branches
To lift the little bud
O, longing of the arteries
To purify the blood

And let the heavens hear it
The penitential hymn
Come healing of the spirit
Come healing of the limb

O let the heavens hear it
The penitential hymn
Come healing of the spirit
Come healing of the limb.

And finally, because I adore Nina Simone’s young voice here – so beautifully sensual and tender, it’s my favourite version of this Beatles song:

Here Comes the Sun, by George Harrison, sung by Nina Simone

 

Here comes the sun, here comes the sun, and I say it’s all right

Little darling, its been a long cold lonely winter
Little darling, it feels like years since you’ve been here
Here comes the sun, here comes the sun and I say it’s all right

Little darling, the smiles returning to the faces
Little darling, it seems like years since you’ve been here
Little darling, its been a long cold lonely winter
Little darling, it seems like years since you’ve been here

Here comes the sun, here comes the sun and I say it’s all right

Little darling, I feel that ice is slowly melting
Little darling, it seems like years since you’ve been clear

Here comes the sun, here comes the sun
And I say it’s all right, i
t’s all right

If you can feel the sun on your face, then you know that it really is and will be all right. I do hope it’s a sunny day, but controlling the weather on the day of my burial, is a little OTT even for me.

Having given it some thought and listening to the tracks again as I’ve been uploading the videos, I think ‘Gracias a la Vida’ has to be the final song as I want something celebratory to finish on.

There are two poems I would like read out…

This one is just because I loved it when I first encountered it and even now still find it confusing and thought-provoking. It’s the only poem I’ve ever known by heart, because I learned it once for a personal development workshop, so it also reminds me of my own journey in confidence and self belief.

No One So Much As You, by Edward Thomas

No one so much as you 
Loves this my clay, 
Or would lament as you 
Its dying day. 

You know me through and through 
Though I have not told, 
And though with what you know 
You are not bold. 

None ever was so fair 
As I thought you: 
Not a word can I bear 
Spoken against you. 

All that I ever did 
For you seemed coarse 
Compared with what I hid 
Nor put in force. 

My eyes scarce dare meet you 
Lest they should prove 
I but respond to you 
And do not love. 

We look and understand, 
We cannot speak 
Except in trifles and 
Words the most weak. 

For I at most accept 
Your love, regretting 
That is all: I have kept 
Only a fretting 

That I could not return 
All that you gave 
And could not ever burn 
With the love you have, 

Till sometimes it did seem 
Better it were 
Never to see you more 
Than linger here 

With only gratitude 
Instead of love – 
A pine in solitude 
Cradling a dove.

And this one by Mary Oliver, because it’s perfect. It encompasses and acknowledges many feelings that I have had in my life, that are part of being alive: being scared, being in despair, being lonely, in pain or regretting things you’ve done. It acknowledges that we each have our own unique qualities and creativity. Just knowing that when we take a step back and see the bigger picture, it’s all ok and we’re a tiny yet precious part of something much bigger and the world will keep on turning.

Wild Geese, by Mary Oliver

You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes, 
over the prairies and the deep trees, 
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air, 
are heading home again.
Whoever you are, no matter how lonely, 
the world offers itself to your imagination, 
calls to you like the wild geese, harsh and exciting-
over and over announcing your place
In the family of things.

Then for something a little different (and no, before you ask, it’s not a CPAP machine!)…

At the core training for Playback Theatre that I attended recently, a Japanese woman, Akemi, who has been a Playback practitioner for some years told us that she has asked to have Playback at her funeral. I love this idea and I would also like Playback for mine.

Playback Theatre is a form of improvised community theatre, which relies on the audience sharing their personal stories for the actors to play them back. So an ‘audience’ of family and friends who share their stories about me, funny things I did or said, annoying things I did or said, special moments, relationships, etc. can then see them played back, as a way of honouring their experience of knowing me and drawing close to the other people there.

There would need to be an experienced and sensitive conductor (the person who invites people to share their stories) to manage the performance. I wonder if one of my lovely Playback teachers, Veronica or Anna would be free and willing to do it? You’ll see if you’re there, what a moving way it is for sharing the stories of someone with whom you will each have different relationships, different memories of and a range of feelings about. I do hope there is some laughter amongst the tears… and not too many embarrassing secrets get exposed.

Very recently, I came across this poem, which I just love for the comic element. Sadly, I’ve not been able to find the author’s name. My friend, Helen has offered to read it out, so that’s one bit sorted…

When I die,
my atoms will come undone;
I’ll be space dust, once again.

The wind will carry me;
scatter me everywhere;
like dandelions in springtime.

I’ll visit worlds and alien moons;
it will be so damn poetic –
until I land on your sandwich.

And lastly, to honour my Jewish culture and because any time I hear the first few words: יִתְגַּדַּל וְיִתְקַדַּשׁ שְׁמֵהּ רַבָּא (Yisgadal veyiskadash sh’mei rabah), it makes the hair on my arms and the back of my neck stand up, it makes me cry and feel comforted at the same time, the traditional Mourners’ Kaddish.

Traditionally in orthodox Judaism, it’s only men who can say Kaddish. If you know anything at all about me, you’ll know I don’t follow tradition, especially if it’s inherently sexist. But while I’d love it to be delivered by a woman, I don’t have a sister or daughter to ask and I’m not sure if my mum would feel comfortable doing it. Nonetheless, I’d still want it to be a family member, so perhaps my brother, Adam would do the honours? Who knows, I may live long enough that my nephew Zeke (currently only three) could contribute…?

The words are not about death at all and neither do they include ashes or dust. They are much more about celebrating life – in fact they are in fervent, expressive praise of a god, in which I do not believe. But life’s funny like that. It’s the sound of the chanted words, the memories and traditions it evokes and the fact that this is what is said/chanted at a Jewish funeral… in my case, no matter how irreligious the Jewish person is.

Writing about the Kaddish prayer has made me think of another song that I just have to have. This one is by a beautiful Yemeni-Israeli Jewish singer called Ofra Haza, who died too young. What I love about her is that by fusing her Yemenite and Israeli cultures in her singing, she succeeded in musically bridging the gap between Israel and the Arab countries. A rare and inspiring ability indeed!

Kaddish, by Ofra Haza

Why do I cry at night?
Oh why do I feel so bad?
Something holds me tight
It’s something in the air.

I have a prayer, a prayer,
A prayer from my heart
Night after night after daylight,
Memories of home…

בְּחַיֵּיכוֹן וּבְיוֹמֵיכוֹן – קַדִּישׁ
עַל יִשְׂרָאֵל תַּלְמִידֵיהוֹן – קַדִּישׁ
עַל נֶחָמָה עַל שֵׁיזָבָא – קַדִּישׁ
עַל רְפוּאָה וּגְאֻלָּה – קַדִּישׁ
עַל סְלִיחָה וְכַפָּרָה – קַדִּישׁ
עַל הַצָּלָה עַל הַצָּלָה – קַדִּישׁ

עַל נֶחָמָה – קַדִּישׁ
עַל רְפוּאָה – קַדִּישׁ
עַל סְלִיחָה – קַדִּישׁ
וְכַפָּרָה עַל הַצָּלָה עַל הַצָּלָה – קַדִּישׁ

אוֹ – קַדִּישׁ דְּרַבָּנָן
אוֹ – קַדִּישׁ דַּאֲמִירָן

בְּעָלְמָא דִּי בְרָא – קַדִּישׁ
הוּא יִתְגַּדַּל וְיִתְקַדַּשׁ – קַדִּישׁ
עַל נֶחָמָה עַל שֵׁיזָבָא – קַדִּישׁ
עַל רְפוּאָה וּגְאֻלָּה – קַדִּישׁ
בְּחַיֵּיכוֹן וּבְיוֹמֵיכוֹן – קַדִּישׁ
עַל יִשְׂרָאֵל תַּלְמִידֵיהוֹן – קַדִּישׁ

עַל שְׁלָמָא – קַדִּישׁ
מִן שְׁמַיָּא – קַדִּישׁ
יְהֵא לָנָא – קַדִּישׁ
וְכַפָּרָה עַל הַצָּלָה עַל הַצָּלָה – קַדִּישׁ

It’s difficult to find any proper translation of the Hebrew words into English, I think because the words are not in Modern Hebrew, but in Yemenite Hebrew (or Temani). However, from what I can make out, the song is in praise of values such as comfort, forgiveness, kindness, rescue, medicine. I see it as a list of appreciations of tangible qualities of goodness, which spiritually means more to me than the concept of god, although I suppose for many people they are one and the same.

Having written this very long and demanding post (thank you for reading this far), I notice two things… One is that it feels very strange and embarrassingly self-centred to be organising what other people will do/say to mourn my death. Talk about being a control freak!

Which reminds me to remind everyone that I will (as previously promised) seriously haunt anyone who speaks about me in terms of battling with cancer and/or losing any such battle. Got it?! Good! :)

The other thing is that this ceremony is going to take quite some time, so I do hope someone will arrange catering. Knowing my family, I’m betting on my aunt Delia! Just please make sure you cater for my vegan and vegetarian family and friends. Thank you! :)