1,000 years of learning

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Last night I spent some quiet time contemplating the state of the world. I came away with a few thoughts. I hope they help anyone taking the time to read this humble blog.

Years before Brendan Bjorn was born, I heard an interview on the radio with a lady who had terrible health issues and many disabilities. She said something in that interview that has stuck with me, as if my soul knew in advance that I would need to remember her words for the journey to come years later with Brendan. The interviewer asked her how she coped daily in light of all of her challenges. She said the following:

I used to ask Why me? But then I realised the question to ask was, Why not me?

Indeed, rephrasing that question changes the entire perspective of the challenges before us, doesn’t it? I think so.

I’m writing a book currently. It covers 1,000 years of history. So, last night as I sat pondering the state of the world with the pandemic, it struck me that history holds a lesson for us today. Humankind has been through pandemics, world wars, viruses that run out of control (** and still do), plagues, and more.

The lesson? Like how the lady in the radio interview so wisely made her point, I’ll phrase it in a question: Why do we now think we are exempt from such trials? As the lady in the radio interview said, Why not me?

So, why not us?

There is no answer. Just as there is no answer to Why not me?

Humankind has been through worse. And we may likely go through worse again in the future. We all need to remember that there was never, nor will there ever be, a guarantee that the way the world lives is to be the way it shall always live. Ways of being, ways of doing business, ways of living and interacting have always evolved over the generations. But we get through it, collectively, and we will again.

There is a release, a relief, in accepting this understanding.

I know first hand how desperately hard it is on a personal level. The isolation. The fear. The worry. The financial impact. I get it, truly. This year has been hell on many levels for me. But it was in these realisations last night that I felt an emotional weight be lifted from me. So, I write this blog piece hoping it may help anyone reading this in the same manner.

We will get through this, in time, and we will come out on the other side of it as a changed, and hopefully better, people.

** As those of you who have followed my journey know, the damage done to Brendan Bjorn’s brain in utero was the result of a virus, cytomegalovirus (CMV), likely contracted by me while I was working as a Child and Family Therapist at a public mental health clinic as the most common way a pregnant woman contracts CMV is through young children. There is no vaccine for CMV. It continues to be a leading cause of birth defects. It is a very common virus. The last 16 years of my life have revolved around the damage done by a virus. Considering this, my absolute hate for viruses is palpable, lest anyone think I’m not considering the impact of the current pandemic. I am.

One carer’s response to the Irish 2020/21 budget

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The Irish government announced the new budget yesterday. This morning, I have had the night to gather my thoughts up off the floor. I will try to make this clear and to the point.

Carer’s Benefit NO CHANGE
Carer’s Allowance NO CHANGE
Disability Allowance NO CHANGE
Carer’s annual grant, increased by €150. That’s .41 cents per day more.

I think what many people, including the Government, don’t recognise – or accept – is that we carers have been WORKING MORE during the pandemic. We ARE indeed the front line of defense in health care for our disabled loved one.

We DO have extra expenses yet LESS “time off” (if any) and many carers have NO help at all.

So while we may not be working outside the home to keep your local pub going or on the stage to entertain you, we are working diligently behind the scenes to keep our health care system & hospitals afloat, that much less busy, during the pandemic.

We ARE WORKING.

I’m finding that when politicians say they are “helping the most vulnerable” in this budget, they’re completely forgetting those truly so profoundly disabled that they aren’t in school or day services; those at home, the incapacitated, fully dependent on a carer.

Most all other work sectors have received income supports. But not carers. Ask why? And then ask how much it will cost the State when carers like me collapse, no longer able to provide the 24/7 nursing-level care to our incapacitated, profoundly disabled, loved one.

I guarantee you it would cost a hell of a lot more to staff nurses around the clock, but this is what the government is risking in not supporting carers like me.

We ARE WORKING.

16: When a warrior grows weary

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Today, October 1st, 2020, my warrior Brendan Bjorn turns 16 years old. A direct descendant of Brian Boru, Rollo the Viking, Robert the Bruce, Kings and Lairds and Warriors down many centuries…to today, to him: My first born son, my Brendan Bjorn.

And today, he reaches an age I never thought – but had desperately hoped – he would see.

His body grows tired, as it does with any true warrior, with the passing of time. He’s fought so many battles. He continues to do so. But he is here today, his birthday, to celebrate 16 years of life. It’s a life which has brought to me indescribable love and lessons which could not have been taught if this journey was anything other than what it is. My son also gave to me the gift of becoming a mother. As I’ve always said, he has given me far more than I could ever give him, and it is true.

I started out on this journey with Brendan Bjorn wanting to give him the gift of healing. I prayed daily for a miracle for years on end. It wasn’t to be. That wasn’t his journey. It isn’t why he’s here. He is here to teach, to give, to love, and oh, how he has done just that. Beautifully.

16 years.
It’s been some journey.

This year has been like no other for all of us. 2020 has brought the world to spin upside-down in many ways. I won’t think on that today. Instead, I’ll relish in the gift that is my son and in his own special place in the history of this world. For he does have his place, just as all of those warriors from whom he has descended.

Happy 16th birthday, my heart, my son, my warrior, Brendan Bjorn.

I love you more than life itself.

What hasn’t changed with COVID19

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As if it’s a distant memory faded over time, I think back to when the COVID19 pandemic began and the hopes…yes, hopes…I had for society. As country after country went into lock down, I had a notion that maybe now society would finally understand what it’s like for families with a profoundly disabled loved one and a life which leaves them isolated and usually home-bound.

It’s been 5 months since lock down happened in March and not much has changed. Not for me and my family and, unfortunately, not for society in terms of the understanding I had hoped would be gained.

No, nothing much has changed.

Lock down has lifted, yet we still don’t get out but on the seldom occasion if we can find a remote place to go where we don’t have to contend with people coming too close and not wearing masks. Even without COVID19 in the equation, there’s still the restriction of no more than 3 hours a day for Brendan Bjorn to be in his wheelchair, how he feels, if his pressure sore areas are acting up, if the weather is fine and if my back feels up to the lifting.

Nope, nothing much has changed.

We’re still isolated. Groceries are delivered, as is anything else we need as a household. I’m the handyman, the accountant, the maid, the nurse, the teacher, the mother and father, the gardener, the cook, and everything else in between. I still go weeks without talking to anyone on the phone except business matters usually related to Brendan Bjorn. There are still weeks I never pass my front gate.

That desperation society felt by being in lock down has been forgotten.

Carers and families such as mine, again…still…also go forgotten.

The empathy I hoped would be gained by society never evolved. While there was a glimmer of recognition for carers at the beginning of lock down, it quickly dissipated as freedom’s shining light burned off the fog that is being restricted to one’s home for weeks on end. Society ran toward the light forgetting those still left in the fog: Carers and their disabled loved ones.

School is reopening and the media is abuzz with stories of normality and hope and smiling children and all of those warm, fuzzy feelings that existed before COVID19.

Yet, the virus hasn’t gone away, no matter how much we want to deny it’s looming existence. For some of us, we just can’t embrace those warm, fuzzy feelings of normality because we know too well that if we do, we’re likely gambling with the life we’ve been working so hard to save for so many years.

No, nothing much has changed.

My son, Brendan Bjorn, is in his medical bed next to me here in our sitting room as I write this latest blog piece. He’s out here because of what appears to be a long standing water leak resulting in black mould in his room which I only discovered a few days ago. Until I can afford to get it all repaired, this is our new normal. It’s ok, actually, as it’s a comfort to have him close while he’s going through a rough patch in his health lately.

My son, Declan, is another story. I’ve struggled with the decision on whether or not to embrace the rest of society’s normality of the return to school for him. He’s starting secondary school this year. A huge step. A right of passage. A journey to becoming a young man. Yet, I hesitate because of COVID19 and what it would mean if he was to bring it home to his older brother. Alas, I can’t embrace the normality. Not yet. Not until we, as a society, see what happens once schools are back in full for a few weeks.

If only the government had put into place a plan for remote learning for students such as Declan who have a Very High Risk family member in the home. But no, forgotten once again, families like ours, by a government and society that didn’t gain the empathy, nor the understanding of the fragility of life, which lock down could have, and should have, brought.

Nope, nothing much has changed.

Dear Virologists, Epidemiologists & Infectious Disease doctors of Ireland

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Let me tell you all a brief story.

In 2004, after 4 miscarriages, I gave birth to a healthy son. Within 4 weeks, my world came crashing down with a diagnosis of congenital Cytomegalovirus (CMV). After I picked myself up off the floor, I researched CMV. I rang my OB/GYN and asked why he hadn’t warned me about CMV, especially considering he knew I worked with very young children (the primary infectors of CMV, as you know) as a Child and Family Therapist in a public mental health clinic. His reply will never, ever, leave my mind. He said:

“But you would have had to live in a bubble for 9 months, Tracy, to avoid that virus.”

My reply?

“It is my choice whether or not to live in a bubble, but by not telling me the information you had, you robbed me of that choice, of the ability to protect my son.” 

3 years later, in 2009, I stood before an auditorium of experts, just as you are, and gave a presentation on opening day at an international CMV conference at the CDC in Atlanta. Afterwards, a number of them approached me – some even with tears in their eyes – apologising for my doctor having not warned me about CMV and for him telling me I would have had to live in a bubble. One of the Virologists even went on to reference what I said in his address to his fellow colleagues. What I said had a genuine impact on them.

I tell you this because I hope those words will impact you all, too.

Here we are in 2020 and I’m saying the same thing now with this virus. I’m not asking you to make my decisions for me. I’m an intelligent woman who can make my own, but I want to make informed, educated decisions. To do that, I – and other families in this situation – need to be given specific information. We don’t know what we don’t know, if that makes sense. Surely, you all know more than we do about this virus.

Think of me as your sister; my sons as your nephews.
What would you tell me then?

You undoubtedly wouldn’t tell your sister what to do, but you would answer her questions, providing her with the latest information you have on SARS-CoV-2, so that she could make the best, most informed and educated decision possible when it came to protecting herself and your nephew who is at very high risk of serious consequences if he contracted COVID19.

Would you tell her you see no problem with your younger, healthy nephew spending all day in secondary school, with no masks, and only 1 metre social distancing, and then coming home to her (with an auto-immune disease) and your other nephew who is profoundly disabled with very complex medical needs and vulnerabilities? Or would you tell her otherwise?

Would you tell her you see no problem with her sending that nephew to secondary school on a bus with no social distancing considering the vulnerable family members he’ll come home to? Or would you tell her otherwise?

What would you say to her, knowing what you know?

This is where I…we…need you to step in and say what you would tell your own family member in our situation. Please. 

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When I say I can’t breathe

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When I say I can’t breathe

In the midst of a panic attack
stress and worry having taken hold
chest tightening
lungs not filling
is when I say I can’t breathe

During those moments
which seem ever increasing
when decisions on safety and life
just can’t seem to be made
is when I say I can’t breathe

Watching or reading
the decision makers ignore
the plight of so many
vulnerable and voiceless
is when I say I can’t breathe

While my son has a seizure
and my heart skips a beat
My body lacking sleep
There’s no other choice
is when I say I can’t breathe

If I allow myself to wander
through photos of old
free to be me
free to explore
is when I say I can’t breathe

When it hits me, again
3 hours a day is all my son has
in a wheelchair, not a bed
if I lift his fragile body
is when I say I can’t breathe

Staring at a silent phone,
Seeing photos of protests
I can only dream to attend,
Videos of beautiful destinations
not to be reached,
is when I say I can’t breathe

As I’m sobbing
tears uncontrolled
soul in mourning
over so much lost
is when I say I can’t breathe

When a walk can’t be simply had
When the body aches in pain
When the empty bed reminds
When an alarm wakes the weary
When silence is too fleeting
When the silence is too long
When the dreams are let go
When the work is never done
When the former self dissolves
and only a shell remains

This is when I say…I can’t breathe.

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Worth less, worth more and self-worth

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I’m a Master’s level professional mental health counselor. Or, should I say, I once was. In recent years, I’ve had to leave my career behind me – where it sits in the back corner of some forgotten shelf gathering untold layers of dust. In recent years, I’ve become an unemployed carer to my profoundly disabled, medically complex teenage son. I am now relegated to welfare and living below the poverty line. I hate it.

And much of the time, I feel worth less because of it.

I worked damned hard for my degrees, working full time to earn a living while attending University full time. For many years, I used every ounce of self-direction and perseverance I had within me. I was proud to have done it all on my own. I’m still proud of what I accomplished. But make no mistake, after years of hearing you are worth less than what you think you are, it takes its toll. It seeps into your self-worth reservoir, draining its reserves a bit more each time you fight for an extra crumb at the table of those who would see you remain working around the clock while treading the surface of the tumultuous waters of caring…the waters which could see you drowned in an instant.

I think I’m worth more. At least, I want to believe that I am. 

I want to believe the work I do 24/7 saving my son’s life on a daily basis by providing him nursing-level care is worth more.

I want to believe I was right to ignore the too-often said words of advice to put my son into a care home so I could “get on with life.”

I want to believe that I’m still relevant to society, still have something to offer, which is worthy of respect and equality…and I wish I didn’t ever feel like what I am doing now isn’t.

I want to believe that some year, when my caring days are done, there will be something remaining of the person I used to be, and not just the current feeling of being a mere shadow of my former self.

I want to believe I can make it to the end of those caring days in one piece, not in a million pieces shattered from years of mentally and physically exhaustive struggles.

I started off this piece talking about my professional career as a mental health counselor. I mention it because I understand how self-worth is rooted in one’s own psyche and the influence self-thought can have on self-worth. Having said that, I also understand how factors outside of one’s self can absolutely contribute to the demise of one’s self-worth, especially over time. It is the latter point I address here because how carers are treated, thought of or not thought of, paid or not paid, included or excluded, does indeed influence their self-thought and self-worth. 

I think the work I do for Brendan Bjorn is worth more, not worth less, than being relegated to welfare. And I certainly don’t think the work is worthless, because if it was, that would mean my son’s life is worthless. I can assure you, it is priceless.

It is time that society and government acknowledge that we,
and those we care for, are worth more
and begin treating us as such.

 

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My former self

Would it help if we whispered? 

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A new government. An old fight. This morning I’m contemplating how to best bring this old fight for rights of family carers and their profoundly disabled loved ones to the shiny, new table of just appointed Government Ministers. We’ve lobbied. We’ve met in person. We’ve emailed. We’ve shouted on Twitter. We’ve spoken on the phone. We’ve even WhatsApp’d. Still, the same long-standing struggles remain.

Would it help if we whispered? 

Parents know the old trick of whispering to get your child’s attention. The child looks up…”uh oh, this is serious. She’s whispering her upset to me now.” Is that what we need to do? Let this piece be that whisper. Frankly, it’s about all I have energy for at the moment anyway. Shouting sounds exhausting, because after months home bound caring 24/7 with no break and no relief in sight thanks to COVID19, we (carers) are exhausted. And dare I add that we lone parent carers are beyond exhausted.

Hear our whisper.

Last week, a thought came to me: I’m going to stop saying I care. I’m going to now say I work for Brendan Bjorn. Why? Because I do. How so? Because if he was anyone other than my own son, it would indeed be called work; I would be employed with a living wage, pension, time off, and the rights of any other worker.

The way I see it, there are four different options
to lay on those shiny new Ministerial tables. 

1. Reclassify the Carer’s role from social welfare into a Carer’s employment contract resulting in an income at fair market rate with a salaried wage commensurate to duties performed and the hours worked, complete with payment into PRSI and pension.

OR

2. Establish the voluntary Colorado-model of training and certifying Family Carers as Health Care Assistants where they are employed by healthcare agencies as the HCA for their disabled family member, complete with salary, pension, and all related benefits.

OR

3. Hire a full time nurse to come into the home (or provide nursing level day centres) to take care of our profoundly disabled family members so we, the carers, can go out and work full time, be an active part of the economy, resume our careers, and have a life outside of caring.

OR

4. Pay all Family Carers the full Carer’s Allowance without the restriction of a means test.

Personally, I prefer options 1, 2 or 3 for a number of reasons, the most important of which are because:

  • Family Carers are absolutely working (often very skilled work, to be noted – and as such are deserving of the same rights and privileges of any other class of worker)
  • As employed individuals, we would have the ability to obtain much needed lines of credit for the many extraordinary expenses we face.
  • Many of us are genuinely sacrificing our own physical health by the work we are doing day in and day out. We will not be able to survive on a pension which hasn’t reflected our years of dedicated, hard work. If we don’t have that fair pension at retirement age, we will only become more financially dependent upon the State for support, not less.

But alas, this is a topic with many finer details to be discussed and debated. For now, during this continued lockdown for Family Carers and their medically vulnerable loved ones, the immediate – URGENT – issue is providing relief in whatever manner best suits each family individually. For some it will be the reopening of day centre services. For others it will be in home nursing respite (note: it must be without the Loco Parentis restriction which keeps the parent carer from leaving their home during respite!). And for others, it may look entirely different.

This is my whisper to the new Government. I hope you all hear it. Let’s talk.

 

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The longest day of the year

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Today is the Summer Solstice. It is the longest day of the year. It is the longest day of the year in a year which has seemed to be the longest in my life. I’m having a very hard time handling 2020 so far…and I don’t see it getting much better, to be very blunt.

All across Ireland, restrictions are being lifted. The majority of people are out shopping (sans masks, by the way), anxiously awaiting for the hair salons and pubs to reopen, planning their first trip outside of their own county, and acting as if COVID19 is all in the past. And frankly, to listen to the government of the day, you wouldn’t blame people for thinking it’s in the past.

COVID19 is not in the past. 

I’m having a real struggle emotionally the last couple of weeks as I see the world around me – well, the world outside of my house, that is – return to normal. Within my house, nothing has changed. The same 24/7 nursing care is provided to my fragile son by me, except now without even the few hours break that school had given me a few days a week.

I am exhausted.
I am burnt out.
I am worried.
I am lonely.
And I don’t want it to be this way anymore.

It’s the Summer Solstice. The days will now start to draw in, more darkness each night. I actually find that easier to deal with when housebound. Seeing the lovely sunny days which we can’t go out and enjoy beyond our own gates is like a dangling carrot never to be eaten. So, that’s me, welcoming the darkening of the days to come.

It’s the darkening in my spirit that I am not happy about.

And please, don’t tell me to try mindfulness or yoga or have more gratitude. I’m a counselor by trade. I know all about those things. I’m a full time, lone parent carer in reality. You likely don’t know about those things if you’re suggesting mindfulness.

I’m to the point now where I’ve actually debated breaking the invisible safety seal across our front gate, forgetting the advice that it’s safest to remain at home. It would be reprehensible of me to gamble with Brendan Bjorn’s life that way, but what of my own life? For myself, I often don’t care anymore. What I do care about is if I was to get seriously ill and my boys became orphans. God only knows what would happen to them, especially Brendan Bjorn.

So, the invisible safety seal remains…for now…for as long as I can tolerate it.

I will wait and watch to decide about school in September for both of the boys. My decision to send one or both of them back to school depends on how the rates of infection in the community are at that time and what safety precautions both of their schools will be implementing. Right now, I’m desperately hoping school can happen safely for both of them. A few more months of this total isolation.

A few more months. I hope that’s all it will be…

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Carer’s Week 2020

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Are you interested in Workers Rights? How about Human Rights? Good! Read on.

There is a cohort of workers who are forced to work without pay, often around the clock, often with no assistance. These workers aren’t even building up a pension for retirement…if they even live to see retirement years, that is.

These workers do have an option to leave this job, but it would literally require they give up one of their children or their spouse to be free to live a life apart from this unpaid, constant work. Can you imagine that being the only choice?

These workers must perform their duties full time if they are to get any financial assistance from the government, and even if they do that work, they may not receive that (very meager) assistance if they have a working spouse or a decent savings to fall back upon.

These workers go days, weeks, sometimes even months without seeing their peers, without having interaction apart from the job they do often 24/7. Their own physical and emotional health slowly eroding as the years of work continue.

Are you still with me?

These workers are family carers.

In Ireland, we save the state approximately €10b annually by providing this care v. if we decided not to provide it and instead put our loved one in residential care (that is, IF it is even available). For many of us, for many reasons, the latter isn’t an option.

This is Carer’s Week. Or as many of us carers call it, Real Carer’s Week.

When you advocate for a better society, please remember those workers who are hidden away behind their doors, often silent, always exhausted, and usually ignored by government.

We don’t need platitudes, and we definitely don’t need platitudes for one week a year.

What we need are reforms.

More services to support our work, both in home and out of the home. Respite services. Day services. A fair living wage that gives us the ability to have credit, the ability to apply for home and vehicle loans, all while we have a pension accruing. We need more disability suitable housing, both social and private. Timely access to required equipment and care.

We need mental health services made available to all family carers, including home based services as many carers are unable to avail of these services outside of the home because of their full time caring work. We need wraparound palliative care for the entire family.

This is just for starters. We need many things, for what we give 24/7 is so much more.

We aren’t unbreakable. We aren’t superheroes. We are human beings who are being exploited because we LOVE and CARE. It’s time for it to change.

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